The Alzheimer's Art Quilt Initiative (AAQI)
Raising Awareness & Funding Research Through Art
www.AlzQuilts.org
Share Your Comments About Alzheimer's
Please take a few moments to add a comment or read a comment posted by another visitor. Your words give courage, strength, and purpose to all who read them.
To receive the most up-to-date information about the Alzheimer's Art Quilt Initiative, subscribe to the AAQI Newsletter.
The Heart Never Forgets
By Beth Powers
In life you forget a lot of things
Your body gets old
Your mind fades away
But your heart never forgets
In life your body gets ill
Muscles get sore
Organs fail
Fingers cramp
But your heart never forgets
In life your mind disappears
You can’t remember birthdays or dates
You mix people names up
The simple things slip your mind
But your heart never forgets
Your heart never forgets,
The people that stole that place in your heart,
Where the home is
Or why you love them
So when you are old and gray
And your mind is going away
Remember your heart never forgets
And so I say
In life you forget a lot of things
Your body gets old
Your mind fades away
But your heart never forgets
My story is typical of a loved one. My grandma was diagnosed when I was 16 and along with my family, I watched her slip into her memories. As she was reliving her past, we all had the opportunity to meet a different side of my favorite person in the whole world. However, once the memories started to leave her completely, the world felt so empty. I can only imagine what really went on in Grandma's mind for the seven years after she lost the ability to speak. My mother called me during the worst snowstorm in five years to tell me it was time. I made her hold the cell phone up to my grandma's ear to say goodbye. She used to joke she was always waiting for me, but when she waited for me to say goodbye, the joke became a heartfelt reminder of the grandma I loved so much. Jen J.
St Paul, MN
I happened upon your site by accident as I always find things this way. I lost my dad to dementia in 1988. It was very a long and sad road that also took my mother. She died from a broken heart a year before this awful condition took him. A year before my mom died I lost my sister to cancer. It was quite a journey, losing my whole family in three years.
My dad was the most happy and lively man, always a smile and a joke on his lips. Everyone loved him. I saw this wonderful man lose all of his memories and turn into someone I didn't know. He was a people person all through his life. He spent the last three years in a nursing home and never asked to come home. I guess that was a blessing of sorts. When he was dying, they called me immediately. It was very important to me that he not die alone. He died in my arms; he was not alone.
Judy Kessler
Chandler, AZ
Ami,
We buried my mother-in-law, Frances last week. She led me to AAQI through her illness and I am forever grateful. My first art quilt was #287. I had never heard the term "art quilt" before then and was so grateful that mine was accepted. From that first attempt I felt that this was a gift to Frances and to me. Since then I have watched your efforts and the growth they have had and I am so proud to be a part of this effort. I will keep sending quilts as long as you need them. I see that they are getting more and more beautiful. For Frances, I will attempt to make something beautiful enough.
Judy Leathers
My mother-in-law was diagnosed with Alzheimer's about two years ago. At that time she was 80 years old and driving her own car. She was so proud of herself, as we were of her. She was very independent then she began to forget things. That wasn't too unusual at her age, until she started getting lost in her own community, forgetting to turn off her stove, putting things away and not being able to find them. It started there, but it's now to the point where she is in a nursing home, and has to be told to chew her food, and to swallow — when we can get her to eat at all.
This Alzheimer's has taken her away from her family and every one that loves her. It has made an old woman out of a vibrant, full of energy, full of life, wonderful woman. And there is nothing we can do, only watch this terrible disease. It's a thief of what we all hold dear, our memories, our mind. It takes everything and leaves a mindless body of a person we don't know anymore.
Mabel B.
I am a registered nurse in BC Canada. I work primarily with clients (who have some form of dementia) and their families that still live in the community. My work allows me to enter into a special relationship with these families in a most difficult time in their lives. It is a privilege to help them in their decision making along their journey.
As a quilter and care provider I was most pleased to find this initiative. My quilting friends and I will be soon adding to your cache. Thank you for this opportunity to be more involved at a different level.
Cathy B.
My husband was diagnosed at the age of 62, at the present time he is 71. He has resided in a nursing home for the past two years, taking him to the nursing home was a most trying experience. Our only hope for this placement was being close to our home, this made visiting very easy and we go daily. I have a son and daughter, along with their families and they are very helpful in his care and the decision making. I just happened to find your web site this date and am looking forward to visiting the Alzheimer’s Forgetting Piece by Piece exhibit when it comes to Morgantown. My quilting has been my salvation, I began quilting two years ago when we placed my husband in the nursing home. My first hand quilted quilt I donated to the nursing home and it was exhibited at the local county fair, we sold tickets and the money was donated to the Alzheimer’s Association, we raised $650.00. I have already completed my second quilt, which will also be donated to the nursing home for the same purpose this year. I plan to make this a yearly project and hopefully raise lots of money for research.
Sandy B. Fort
Ashby, WV
My 85 year old mother is living with my husband and me. She moved in a little over 13 months ago. We knew at the time that mom was no longer able to live by herself; she needed help with her meds, meals & needed more social interaction. We had no idea how fast mom’s memory and abilities would decline. It is a strain. Mom does little for herself; she complains about her health everyday. It is very difficult to get her to go out of the house any more as she is afraid she will make a verbal faux pas or God forbid, have gas. My husband is retired & I still work full-time so her care falls mostly on his shoulders. He is a wonderful man needless to say. I recently was granted intermittent leave through FLMA. I have four siblings –one lives in the same city and is able to provide care so we can occasionally have a night out. The others visit as much as possible.
I am a quilter and found your website while looking at my favorite quilt shop website.
Marlene Hanft
Waterloo, IA
I recently finished my Nurses Aid in April of 2007. In August of 2008 I secured a full time permanent position at an assisted living centre. I have had no exposure to the elderly until my posting… My point is all of your writers are truly blessed to have met the wonderful people they speak of. I am learning about this Alzheimer's on a daily basis and I too am happy for every day I have with my tenants.
Debbie from Canada
I lost my grandmother, Lois, to Alzheimer's in December 2003. It's such a cruel, vicious disease, reducing a woman of dignity to a mere shell of someone I love. I have three daughters who my grandmother loved very much and I remember taking a day off work to go visit her (she lived two hours away). Normal visits included my husband and children, but this day I decided to go alone. Poor thing.... it was just too upsetting for her to see me out of context. She worried and fretted the entire time I was there because "that man and those little girls" weren't with me. By that time she had lost my name and simply called me "Indiana". And I clearly belonged with "that man and those little girls". I was careful to never go visit her alone again. At least not until much later when she no longer recognized anyone or anything.
My prayers are with every family that has been touched by this dreadful disease.
Lori T.
Greenfield, IN
In our family, it has been my Dad who has Alzheimer's disease. We lived and watched him go for a decade now-he is worn very thin in every sense of the word.
Thank you Ami for the energy and power you have shown in beginning this Quilt Initiative. Our common thread is so strengthened by each other. My Dad has always supported my sewing — when I was seven years old, I received a "toy" sewing machine that didn't really sew. (It did a chain stitch that, of course, ripped out when I pulled on it.) Daddy was so mad that the machine didn't work right that he went out the day after Christmas and found an old treadle machine that still worked and bought it for me. I used it for years and years. Jean W.
Raleigh, NC
My husband Earl and I had a 12-year Journey with Alzheimer's that started in 1993 and ended March 22, 2005. We saw some signs that we knew he was showing early signs of Alzheimer's and went to our family doctor. Our doctor had been through Alzheimer's with his mother just a few years before this and knew we were right.
We chose not to tell our five children, or his family or mine, until we had to. Earl worked until December 1996 without anyone knowing he had Alzheimer's. No one on either side of our family had any idea either.
Earl was always a quiet person and everyone just thought it was usual for him not to talk very much.
We did everything we could for him. He saw four different neurologists as well as one other internist and all agreed it was Alzheimer's disease. He was on one of the Alzheimer's medications all the way through from 1993.
Earl was able to keep raising a garden and taking care of a few calves we raised each year until 2002. He started having daily migraine headaches in 2002 and the neurologist did all test possible and said there was no connection with migraine headaches and Alzheimer's.
I found AlzaheimersCargivers on the computer and read every book I could find on Alzheimer's. I was prepared for what lay ahead of us and was able to help him all I could.
Earl was able to talk to us all the way to the day he died. Earl was in a hospital bed from June 2004 because he was having problems getting out of bed. I have a spinal fusion and wear a back brace so it was hard to lift him myself.
Earl started to shuffle when he walked in 2002 — and it just kept getting worse until he could not walk without help by January of 2004. His feet and leg got to the point where he had to be in a wheelchair. He could stand and move enough with me holding him to get from the bed to the bedside commode or the wheelchair. He could stand and move enough to move from the wheelchair to the recliner.
January of 2005 he really started going down fast. The middle of January he had to have a catheter because he could not make his kidneys act on their own any longer. He had to have an enema to have a bowel movement and would know when he needed to have a bowel movement but could not do it without the Fleet enemas.
He was totally bedridden from the middle of January until his death in March. He had lost the control to sit up and begged us to let him get up. We had to put pillows behind him and have a person on each side of him while he sat on the side of the bed and we had to keep him from sliding off the bed because he could no longer control his body to make it sit up.
He would hold a small piece of bread or cracker and feed himself that much while I fed him the remainder of his meal. He would feed himself slices of apples and chew them up. He also liked to feed himself small strips of cheese.
He and I had always checked our stock each day when the newspaper came. He would still ask me every day when I brought the newspaper in the bedroom what our stocks were doing. In those last months he would tell me to keep a check on the oil and other fluids in my car. He told me to take it to the service station with full service at least once a month and have them check everything for me. He would tell me to check our propane gas and keep a close check on it so I would not run out when it was real cold.
He had asked me over and over if I was keeping a close check on our savings, stock and to be sure I did not get in debt.
He knew our five children and 9 grand children that came in and out all the time and his brother and three sisters and their spouses that lived next door to each other and us.
Our faith was such a comfort to us and he enjoyed the visits from our church members and pastor. He always wanted them to have prayer before they left.
We had always held each other and said our prayers ever night and he asked me when we knew he had Alzheimer's to pray each night that God would call him to heaven before he was a vegetable. God did answer our prayers March 22, 2005 with all our family here with him as he kissed me and smiled when I told him he had done everything he was supposed to here and Jesus was waiting with open arms. He looked at our youngest son who was holding his other hand and at our two granddaughters that were at the foot of the bed. He had a beautiful smile on his face as he left us here and joined Jesus in heaven.
I am so thankful we were able to keep here at home with the help of hospice from April 2004 until March 22, 2005. I still work daily with the Alzheimer's Caregiving group on the computer. I am using all I learned to help the ones that are on the journey now.
Ann F.
Talladega, AL
My Dad had Alzheimer's disease. Towards the end, the family had a dinner. Several members came into town and met at my brother's house. At one point Dad leaned over to my sister and said, "I know you're my daughter, but I don't know which one." She took his hand. Then he added," I know they are all family, but I don't know who anyone is." She leaned over and said "That's ok. All you have to remember is that they all love you." Dad relaxed, and smiled.
I am amazed at my sister's strength, at my brother's kindness for taking Dad into his home. We all loved Dad dearly and miss him.
Patty A.
Thank you Ami for this site and for your dedication. My father was diagnosed with Alzheimer's in 2003 at the age of 63. His mother passed several years earlier with Alzheimer's, as did his father with Dementia. Yes, what a terrible disease and I, like so many others, often wonder what is in my future. I lost my father this past August 16, 2007 at 1:45 am. I, along with my two step brothers and step mother watched him take his last breath. We were called in to the nursing home on Sunday and spent every minute with him until those final moments the following Thursday. He is with his Maker now. From that very moment, I ceased my whining concerning my future and decided to live life to the fullest. No sense in worrying; what God has planned for me, or for all of us for that matter, is his plan. We can't change that plan. However, we can make a difference, just as you are doing here on this site. I will be making some donations in 2008.
Thank you so much.
Sherry C.
Waxhaw, NC
My dear, sweet big sister was diagnosed with Alzheimer's just 4 years ago at the age of 55. She taught me to sew and later shared her love of quilting with me. We looked forward to the days when we could retire and sew all the stuff we so lovingly saved in our stash! We planned trips to Paducah, Houston, and even Holland where our heritage was born. She made beautiful quilts, far surpassing my talents. As she had taught me, I soon was teaching her, helping her and finally she could sew no more. Today she lies in a nursing home; she can no longer walk, feed herself, or talk very much. Hospice has come in and try to keep her comfortable and at peace. As children we used to walk the beach searching for "beach glass", a practice we never gave up. Now I walk alone and bring her the treasures to decorate her room. We always inspected each piece to be sure it was 'done'-no sharp edges or shinny sides. It's said it takes 10 years to make a piece of glass into "beach glass." I make lots of wishes- first it was for a cure, then a better treatment, now I wish for peace....I think its working because she doesn't scream quite so much and her forehead furrows and fearful eyes are fading. This weekend I will again make the trip to sit with my sister, walk the beach, and make wishes of peace. She is still here, but I miss her so much!
Sandee
Atlanta, GA
My mother is now in the final stages of Alzheimer's - and I understand why some refer to it as the "long goodbye". I've being saying goodbye in stages for a few years now since she was diagnosed, watching the woman who gave me life slowly die - and not in the way she'd ever wanted to. I made a memory quilt for her that had pictures of her children and grandchildren incorporated with lighthouses and the ocean - she smiled and said "you know me well." I so hope that a cure can be found — so that people who are diagnosed with this terrible disease do not have to face such an undignified future, and their loved ones do not have to face the long goodbye. Thanks for your Initiative . . . I just know it's helping to make a difference.
Susan P.
Emmett, Idaho
I was thrilled to find this site...and will be starting a new quilt soon to donate to the nursing home who so lovingly took care of my grandmother for the last 1½ years of her life. I just lost her on August 10,2007 to this horrible disease. She never knew that she had Alzheimer's....she always said that she hoped that she never got that, and that would be such a horrible way to die. She never really knew much about the disease. She would have been 83 on the 28th of August, and I miss her so much.
I used to spend every summer with her until late in my teen years. From my grandmother I got my love of fishing, crochet and being outdoors in general...along with a deep respect for my elders and family. Our family will be burying her on Monday August 13, 2007 and deeply miss her already but also know that she has gone on to a better place. She won't be confused any longer and will now be able to see her mother whom she missed dearly. She often asked my mother the date that she married her first husband who was killed in WWIII, Mom always said that she wasn't sure but thought that it was 1940, we always got a chuckle out of that because Mom wasn't born yet.
We are hoping and praying for a cure soon...please have all your friends and families support all Alzheimer's association benefits to their degree of ability. You never know if or when you or your family will be affected. Thank you so much for the opportunity to let me put into words some of my grief.
Sincerely,
R. W., Tipton IA
My husband has Alzheimer's disease. I am his caregiver. He goes to a day care center every Monday. That is when our quilt study group meets. We go out for lunch together, and I can talk with my friends, because at home there is no conversation. It is so sad. I did not expect our retirement to turn out like this. I don't know how much longer I can keep this up. I am 78 and he is 86 years old.
Erna
Beloit, WI
Thank you. I read all the letters and cried and cried. My husband has Alzheimer's and is now in a nursing home. I go to see him six days a week. I keep trying to convince myself that I have done the right thing, but every time I leave him and get back home I just want to go and get him out of there. He is such a lovely man and I am dreading what lies ahead. I am putting on a brave face but I am dying inside. I have to show that I am coping as I can't bear to worry my daughter and son more than I have too. This horrible, horrible disease has taken its toll. He still smiles at me with his beautiful blue eyes. Why Him?
June S.
Essex, England
I loved my grandmother. She was incredibly intelligent, a great knitter and had a wonderful laugh. She could also be very bossy, but that was Grandma Evy. In the last stages of her illness, she lost all recognition of her loved ones and was terribly confused. One time toward the end of her life, my husband and I were in Milwaukee visiting her. We were taking her around her nursing home in a wheel chair and talking to her. She kept asking me why I called her, “Grandma.” I said, “It’s because you’re my grandmother. I’m Ellen.” She just looked at me with a blank stare. I’m guessing she was trying to figure out who I was. My husband took a lovely photograph of us which I sent to her. She’d look at it and said to my aunt, “who’s the pretty girl in the picture?” It was me. Grandma asked my aunt to cut out the “old lady” but leave the pretty girl. I miss my Grandma Evy and I will always treasure the wonderful relationship we had and the things she taught me.
Ellen G.
San Pedro, CA
When my mother-in-law was admitted to a rest home and we were trying to make sense of Alzheimer's and the effect on her, one thing said to us sticks in my mind. A young therapist said to us, "Do you know that panicky feeling when you can't find your car at a parking lot? Well that is how they feel every day when they wake up." Somehow she had given us a way to actually feel what they are feeling. It is so frightening and we have never forgotten it. Every time I see her I really believe that I understand anything she does because I understand her fear so deeply.
Judy Leathers
My husband has Alzheimer's and I think it is the loneliness that I feel mostly. We have been married 59 years and you have no one to share your memories with. I do a lot of quilting to keep busy besides taking care of my husband. He is 78 yrs old and I am 75 years old. We used to take our travel trailer on trips and that was our desire when we retired, but God had different plans for us. I used to play the piano for church and now we can't go to church as my husband can't sit that long so I no longer play. I pray if there is not a cure in my lifetime that it will come in the next generation.
Nila D.
Belton, TX
My grandfather had Alzheimer's and we lost him to this terrible, cruel disease in May of 1997.
Grandpa always loved to eat, he was over 6 foot tall and large framed. Alzheimer's took the ability to eat away from him; he weighed 90 lbs when he died. My father was an only child and I one of six grandchildren who was raised next door to my grandparents. Grandpa had no clue who any of us was for the last couple years of his life. He just knew we were the ones that feed him when he would eat, showered him, shaved him, dressed him, read to him, watched television with him and most importantly loved him.
The lose of a loved one always hurts but to watch that loved one dwindle down to nothing, be unknowing of those around him/her and their surroundings is cruel and still hurts this 10 years later.
Because, I could be in line to get this disease I am doing a memory quilt for myself of my life. I want my children to remember me for who I was not what I became. And if I'm lucky and don't get Alzheimer's or a cure is found the quilt will still be a reminder to them who I was.
Kris B.
Lincoln, NE
My sweet and gentle father was diagnosed with Alzheimer's on February 3, 2003. The day that Dad was diagnosed he handled it like a trouper, he was very brave about it. I told Dad that me and my husband would be with him every step of the way, and we were. A month after Dad's diagnosis I reached out to the Alzheimer's Association. Dad and I attended support groups together with other caregivers and Alzheimer's patients. We all learned a lot from each other and supported each other. These wonderful, caring, loving people are my extended family.
As the disease progressed I was filled with sadness, grief, anger and fear of the unknown. What else would this disease do to Dad? We switched roles, Dad became the child and I became the parent. He was so very sweet and innocent, relying on me for everything and trusting me completely. I am honored and blessed that he put that kind of trust in me. This was the most difficult and most loving thing I've ever done in my life.
One valuable lesson I learned about Alzheimer's disease is to "Enter their World." It really doesn't matter if your loved one with Alzheimer's says the carpet is green when in fact it's red. Just go with the flow. The only time I ever intercepted Dad's delusions or hallucinations was when he was afraid or sad because of them, which fortunately was infrequent. He usually enjoyed the "things that he saw" that others didn't see.
As I watched Alzheimer's take my Dad away slowly but surely it was heart-wrenching. However, I have learned the value of keeping a sense of humor. We shared a lot of love and laughter even in the face of Alzheimer's disease.
Dad eventually moved to a "dementia specific facility" where I went to see him almost daily. One of the last good days that Dad & I spent together we went for a walk, enjoying the birds, flowers and trees. Dad was so childlike and innocent. We came across a little Wren. Dad was always an animal and nature lover, so we ever so carefully knelt down an arms length from the little bird and admired him. Dad loved this. He also shared a story about a "secret room" that he had discovered and was happy and quite smitten with himself. He said that he could look through a crack in the wall and see the room. I was wondering what he could mean, but didn't want to push it and upset him. I told him this was very cool and we laughed together about his discovery. The next day we walked together again and came to a wooden fence. Dad went over to the fence and peeked through it. With a big smile on his face he showed me "the room" that he had discovered. I peaked through the fence then smiled and laughed about how wonderful this was and told him it was our secret.
On February 22, 2007 Dad went home to be with the angels. Our journey together is over. I miss him every day.
The Alzheimer's Association was with us from the first phone call until Dad's final days on earth.
My involvement with the Alzheimer's Association won't be over until a cure for Alzheimer's is found. I continue attending the support groups that Dad & I went to together, now helping others who are living with Alzheimer's. I'm a member of the Alzheimer's Association Memory Walk Committee and will continue to have a Memory Walk team every year in loving memory of Dad.
Lea N.
Port St. Lucie, FL
Six years ago June, my mother was told she had Alzheimer's. I watched a soft spoken, non-cursing and never touched a drop of alcohol in her life person turn into a very grouchy and sometimes mean person. My mother had quilted all her life and made the quilts from clothes we wore and out grew of. It was always fun to recognize the material as a piece of what we wore. I am the youngest of eight children born to my mother (six girls and two boys). I am the only daughter that kept the love of quilting alive. I have three daughters and my youngest (age 12) likes to sew and I hope she will keep her interest and carry on after me. My mother lived three years after she was diagnosed and has been gone three years now. About a year before she passed she was working on a quilt, but didn’t finish it. When it became too difficult she gave the unfinished quilt to me and I knew I would finish it for her. I held onto it with every intension of finishing it but put it away. After mom died It took me all of three years to pick it up without crying, but the month of March seemed appropriate since she loved everything about spring! The pattern is “Drunkards Path”. I smile at her humor when I look back and remember her telling me that she sometimes felt like she was walking like a drunk during the Alzheimer's time. How ironic that she would choose to do that pattern! I miss her smile and remember her every time the birds sing and the flowers bloom.
Tammy C
Springfield, IL
You're all correct. This is a devastating disease. My younger brother was diagnosed when he was 58 yrs of age. Doctors told him his was from his exposure to Agent Orange in Vietnam. He is in a care center in Libby, Montana. His wife is very attentive. He doesn't seem to remember how he was an excellent guitar player or that he knew EVERYTHING about Naval history. We so miss the caring sensitive person he was.
Louise Winchel
Selah, WA
My Dad was diagnosed with AD about 6 years ago. At first, it was little things that he either forgot or misplaced. My niece got married in Texas in 2003, and Dad wanted to go to the wedding. But he wouldn't fly, he didn't know why he didn't want to fly, but he would only go if we drove. At the time he was 78 and he could be very belligerent with Mom, so I decided that my youngest son and I would go with them. It was a long hard trip going both ways, but I thank God everyday for letting us enjoy this "last" trip with both Dad and Mom. Dad really had the time of his life with my brother-in-law and my son. Words can't describe how much this meant to all of us.
A little more than a year later, we had to put Dad into a nursing home, since Mom just couldn't handle his mood swings and violence. (Dad was never like this before. He was the kindest, gentlest man ever!) He gave over 50 years of his life to the local Volunteer Fire Department and Emergency Squad. This was the hardest decision we ever had to make and it seemed like there was no help in this area for us to reach out to. So, I'm sure we made mistakes, but we did the best we could for Dad, not for us. Mom was beside herself, she just didn't know what to do, and after loosing more than 30 pounds, we had no choice. After putting Dad in the home, it was like we had lost him totally. One of us visited him almost daily, and this disease is so painful for the family, because you never know if you're going to find Dad as he almost was, or you're just going to find his sad, vacant eyes; most of the time, we left in tears.
We lost Dad on Mother's Day 2006, just 15 minutes after my Mom and sister visited with him, he was gone. It was like he waited for Mom to say goodbye.
This disease makes you mourn for your loved one not once, but twice. Once when you have to put them in a more secure place and then the final time when they go to meet their maker. At least now Dad, you have your mind back and you're at peace and happy.
Hopefully, I can get a quilt done for the Nursing Home to raffle off to benefit their "Memory Garden", it's the least I can do, so other families can be spared the pain of the ROTTEN disease.
Thank You Ami, for doing all you do to help!
Cindy N.
Westfield, NY
My husband Harold, has Alzheimer's disease, I can't say he suffers from it, he doesn't mind losing memories, abilities, and skills, he's sweet, lovable, thankful and glad to be able to stay in his own home with me. He is still able to take care of himself, enjoys my cooking, thinks I'm nice looking, and likes to hug, but for me this isn't enough. I miss the man he was, able to take care of things, liking to garden and do household chores, and make decisions and answer my questions. Several years ago he started saying "I used to know that" and "I used to like doing that, but not now", and I knew something was wrong when he quit what would have been a simple job of home plumbing and said "I can't do this any more". We can't live in the land of "If Only" and try to live day by day taking care of things, but I miss things as they were.
Constance R.
Galion, OHIO
I lost my Dad in Sept. of 2004 of Alzheimer's disease, this is a mind robbing disease, he had it along time before we knew what it was. He was in a nursing home for the last 5 years of his life. I visited him almost everyday for the 5 years, and the week that we were losing him I was there 24/7. It was one of the worst days of my life to see him slip away, but knowing he was going to Heaven and he would not have to know who he was, everyone would know him, for the strong man that he was before this disease.
In his memory every year for the Alzheimer's Association Memory Walk, I make and raffle off a queen size quilt. Tto date we have made over $2000.00, TO HELP FIND A CURE. This year's quilt is being machine quilted as we speak.
Diane C.
Clayton, NY
I lost my mother to Alzheimer's sometime before she died in 2003. She was kept going by my father, but after his death she went downhill rapidly. The most painful part for me is that they did not live close to us and I was not able to have much that much contact with her. She could not use the phone or receive e-mail — even letters were not well received. She was in a good place — with people who cared, but the family was spread all over. The emotional and physical load, and it was a load, fell on my brother. It was not easy for him.
We did have some good times - some visits, my daughter's wedding which she was able to attend. But it was seeing her lose her creative spark that hurt the most. She painted, quilted, did weavings, knitted - and everything she did was beautifully done. She just forgot over the course of several years that she did all these wonderful things. I aspire to pass some of that love of creating along to my grandchildren - Thank you for this opportunity - I think I will try a quilt piece in her memory. Sharon S.
South Pasadena, CA
My husband was diagnosed in 2003. He was first put on Aricept and later Namenda. I saw a lot of improvement when they added Namenda. I saw very little with the Aricept. I had suspected Alzheimer's in 1998. He doesn't seem to believe it because he has no idea how much he has lost. His occupation was Master Mechanic at Phillips Petroleum. He also became the big boss over the Phillips fleet of vehicles. Now he can't even change the oil in our car. My biggest problem besides the usual is not knowing what to expect next. I would love to have an idea of how long the meds will help him. He can still drive and find his way around. Still dresses himself and showers and shaves. But he has a very hard time with the Tv's remote control. This makes no sense to me. He still knows everyone he sees on a regular basis but not the ones he hasn't seen for six months or longer. Angela C.
Haskell, Oklahoma
My mom has AD. This week she got up to go to the bathroom in the night. She got confused and my dad found her sitting on the floor asking for him. She said she was in a hotel and no one would talk to her until her dad ( died 1965) came and took her home. She was the caregiver for my grandmother who also had AD. She refused to put Grandma in a home when she got to the angry, mean stage. she would bite and spit. Grandma was the kindest and most gentle woman but the disease took over and did this to her. Now Mom is starting to go the way Grandma did. This disease has to be stopped. I will do what I can to make it so.
Good luck to everyone who is threatened with this disease.
Joan N, Erskine, MN
My name is Terri. I found your Alzheimer's Art Quilt Initiative through a link posted on a long-arm quilting email list. I was so happy to see that quilters were joining together to help raise research money for a cure.
My grandmother taught me how to sew and embroider when I was very young. We made Barbie clothes, baby doll clothes, and whenever I went to visit, she had something for me to work on. I have loved needlework and sewing ever since. I am now a quilter with a long-arm business and I remember how thrilled she was when she found out I had chosen quilting as a career. I don’t remember her making any quilts but I know she loved all kinds of arts and crafts, including embroidery, tatting and cross-stitch.
She was diagnosed in 2006 with mixed Alzheimer’s, after many incidents and episodes that were uncharacteristic of her nature and put her in harm’s way. She had previously been tested by her doctor in early 2006 and had passed with flying colors. By late spring, she was tested again and even the doctor was shocked at how fast she had succumbed to AD. By August 2006, she was placed in a nursing home because she lived alone and could no longer take care of herself.
As vice-president of my quilting guild, I hope to encourage our members to join me in creating a collection of “priority” quilts to auction on your website. In March 2007, I will be doing a presentation at our monthly meeting and issuing the challenge to them. I am confident you will be hearing from us soon. Terri P.
Oconto Falls, WI
My mother is in the mid stage of Alzheimer's Disease. She is currently in a nursing home where she is kept active and healthy. She is happy and seems to enjoy where she is and what she can do. But I have learned that this disease is harder on the family and friends of the person afflicted with this horrible illness. She does not know what she does not know. I cry because Alzheimer's has taken my mother from me, and she doesn't even know it. She looks and sounds like my mother, she has my mothers smile, but her eyes look sometimes scared, sometimes confused, sometimes empty, and sometimes full of excitement for a moment, as she sees me. For a moment I am her daughter, she is my Mom, and then the cloud comes back over her eyes. I celebrate those very small moments. She was, she is, and she always will be a very special lady......my Mom.
Judy S
Newark, Ohio
My name is Diana and I work with disabled Americans most whom have some form of dementia. We have a lot of Alzheimer's clients where I work (an adult day care) It really hurts me to see families in so much pain over how to take care of their loved one and not be able to get the help they need in or out of the nursing homes.
We work with families so closely that they have become a part of our family. Families work hard to meet the needs of their loved one that cannot do the things they once did, let alone remember their names of the ones that are caring for them.
We have such a loving and family like atmosphere in our facility. and everyone goes beyond their duties to make things easier for the ones we care for and their caring facilities. We provide support groups and our doors are always open for anyone. At times there are people who need us upon an emergency. So many of the family members become ill their selves and need help with getting the care for their love one that has Alzheimer's.
I hope their is a cure for this disease that at times is not properly diagnoses or diagnosed at all. Hope the quilts are doing well and I would love to see them in Ohio Thank you for such a caring and good job.
Diana F.
Mount Perry, OH
My sister is living with AD and trying hard to just meet each day as it comes. She tells me of she abilities she has lost but then says "I won't give up". I see the struggle via the phone because we live many miles away from each other. She craves to do the hand work she once could like knitting and crocheting, but can't. She no longer can dress herself, but is still able to read and talk with everyone. She is still at home in her husbands care and dealing the best she can on a day to day basis.
She is quite a brave lady and I admire her.
Eve,
Colorado
I found you site through an old high school friend of my wife's with whom we have recently been reunited. I am the sole caregiver for my beautiful wife of forty years and sweetheart since junior high school. In 2002 I began to realize that there was something seriously wrong with her memory. Then, that fall, she told me she was having problems with her math. She could not even add 7+5! My daughter-in-law, a severe and profound special education teacher confirmed my fears at Christmas. For my beautiful wife's 54th birthday on March 1, 2003, she received a diagnosis of Early On-set Alzheimer's. She has been my life since we met when she was fifteen and I was sixteen. It was love at first sight and has only grown stronger over the years. After our 40th anniversary this past August, I finally started the grieving process and as a part of that grieving I started writing what is becoming a book about our life. The following is the end. You are welcome to use any or all of it in any way you see fit, if it will contribute to the understanding of the horrible effects of this terrible disease on the loved ones and caregivers. Sharing your pain,
Eric D. Rhodus
Denham Springs, La.
My sweet, sweet Mother, Jonnie Marie, has Alzheimer's disease and has been in a nursing home for 2 years. This is indeed the hardest thing I have ever done, watching her deteriorate, and dealing with all the legal, medical, financial issues that go with it. My Mother's mother also had AD and died at a young age. They didn't know what it was then and they called it Hardening of the Arteries. She was placed in a Mental Hospital, endured shock therapy, until she died. My Mother had always feared the same thing happening to her.
Many years ago, she told me if she ever got this disease, to please place her in a good facility, come check on her regularly to make sure she is ok, then continue my life WITHOUT GUILT. (yeah, right) It really does help, though, when I think about her saying this to me so many times through the years. I have already started talking to MY daughter about this too. I want her to be ok if this happens to me, and she has to put me in a care facility.
I miss my mother sooo much. She is still here, but she isn't here.....know what I mean? I miss just talking, showing her new things I buy for my house, scheming our little plans. This truely IS a LONG Goodbye. My only comfort is to know that when we get to heaven, Jesus will have given her a new brain, and she will be ok. Then we can sit on a cloud and chat a while. :o)
Kay A.
Tyler, TX
Three generations in my family have been taken by this terrible disease. I remember my mom's lucid moments, when she expressed her horror that she was 'losing her mind'. I pray every day for discovery of a cure, so no family will have to experience the powerless feelings this disease brings. I will try my best to help whenever I can to support this important research.
Melissa Sonnen
Albuquerque, NM
You are all correct. It is a devastating disease. My younger brother was diagnosed when he was 58 yrs old---two years ago. Doctors told him his was probably from agent orange exposure in Vietnam. He is already in a care center in Libby, Montana. His wife is very attentive. She said its like a mother/child relationship now. He doesn't seem to remember that he was an excellent guitar player or that he knew EVERYTHING about naval history. I miss his intellect and love.
Louise Winchel
Selah, WA
My Dad is currently living with Alzheimer's. Dad was diagnosed 3 years ago, he is now 53. We have a rare genetic form of the disease. His brother is in his late 50's and is in stage 5. Ten of my grandmother's siblings, including herself, died with AD.
I say he is living with it because he will not give up hope that there will some day be a cure. He advocates for himself and others with AD by speaking to others about his experiences with the disease, about his family history, and about current research.
This disease should not be a death sentence. There should be no long goodbye. Support the calls for research funding.
Rachel J.
San Luis Obispo county, CA
I was given the gift of running an Alzheimer's care unit for several years in California. It was the toughest, saddest and most rewarding experience I've ever had. The tough part was that I fell in love with each person that came into our care. The saddest part was watching the decline and the sadness and hurt it inflicted on the families of the residents. We made it a point to never forget who these precious people were before the Alzheimer's. We included activities that related to them as much as possible. We "normalized" their life as much as we could by stepping into their time be it the 1940's or 50's.
You would never know who had been a bowling champion, fishing champion, dancer, pharmacist, quilter, etc... unless you were fortunate enough to bring these things out in them. Families sometimes are so focused on their care, they forget to share these parts of their loved one's lives with the caregivers. We found these talents and skills come out by introducing "bowling in the hallway", a BBQ with fishing, music concerts etc... I swear when we had these events, you wouldn't know the folks had Alzheimer's. They slipped into their role of young adult/parent and gabbed with the others like it was 1940 all over again.
Unfortunately, good dementia care homes like that one cost over $4,500 a month minimum. Insurance doesn't pay unless you were lucky enough to take out an "assisted-living" policy years ago. Medicare only pays if you need skilled nursing. I encourage everyone at age 50 to explore investing in an assisted living policy to offset costs should they ever need help with activities of daily living. These policies cover skilled nursing care, home care and hospice. The policy I have is an investment. If I never need to use it, they will refund the money to me or my family members. I don't want my children to be burdened with huge financial worries on top of worries about my health and safety if I need help when I get older. That was one of the greatest lessons I learned from running an assisted living facility.
Alzheimer's is one of the most hateful and prevalent diseases out there and yet the government doesn't help with assisted living for these folks. As we baby-boomers age, there will be many more folks with Alzheimer's disease. I pray daily for a cure for this thief of people's golden years. I truly believe we will find a cure. I pray it's soon! My heart and prayers to those of you who have been diagnosed with it or have a loved one in the family with this disease.
My biggest kudos for Ami's efforts to raise awareness and money to fight this disease. I will make a little quilt soon, I promise!
Charlene M Houston, TX
I was an RN and a Cert nurses Aide in Long term Care for over 20 years and saw Alzheimer's in all stages. I know the heart ache it caused the families. But I also truly LOVED taking care of those with the disease. I am now disabled and only 45 and have taught myself to quilt and can think of no better way to honor or help those who have been robbed of their precious memories then by doing something like this. BRAVO AMI!!! I would love to help!!!
Juanita Millhouse
Ottumwa, IA
My beautiful mother passed away in Dec. 1999 of complications from Alzheimer's. It is still painful for me to write about this horrible disease and how it affected my mother. She was beautiful in so many ways, inside and out. So was my father, unfortunately he was taken away from us the day after his 52nd birthday. His birthday was Christmas Day. Dad was only a few miles from home and was killed in an auto accident. I am so fortunate to have had both of them as parents. They were wonderful. My brother and I miss them everyday.
Let's hope there will be a cure for Alzheimer's soon.
Thank you for this opportunity to write to you.
Sincerely,
HJ
My grandfather was one of the most important people in my life. I lost him last year after battling Alzheimer's for 15 years. I would see him everyday. We would go for walks, watch TV, or listen to the radio. We would also look at old family photos, and talk about old times. As time went on I saw the pictures becoming strange faces to him, the walks becoming more difficult to take, and the conversations becoming less and less. To me not hearing the sound of my grandfather's voice was the hardest for me to cope with. No matter how I was feeling the sound of his voice always made me feel safe. So many times I want to pick up the phone and call him, but I know that is not possible. I miss you so much Pop. I know someday a cure will be found. I pray for it all the time. Stacy T
Enfield, CT
Ami, I am so grateful to you for this chance to help end a devastating disease.
My mother-in-law is an Alzheimer's patient. I just want to give credit to my husband and all the sons who are caregivers. He is the only child and has had to become well-versed in so many new areas due to this. He has learned about Depends®, podiatry, facial hair removal, make-up, bowel movements, manicures, underwear (personal shopping),dental care, hair care, clothes sizes, coordinating closets, cleaning toilets, decorating a small room; as well as plowing through insurance rules and Medicare rules and all the never-ending red tape that he has to battle just to take care of his mother. Just to see her smile is his reward. I just cringe when I hear "Too bad she didn't have daughters". I do what I can, as her daughter-in law, but I am completely in awe of her son and the things he does for his mother. No daughter could try harder to care for a mother.
So, I salute all the sons who are taking care of parents who will never be able to say, "Thank you" and who would never have dreamed what talents these guys had hidden !
Judy Leathers
Pelham, AL
My father in law has Alzheimer's. He couldn't understand why he couldn't drive ( keep his drivers license) when he was getting lost and getting home at 3:00 AM in the morning. We had to sell his home 2 years ago to pay for his care, of which he has no idea. It is so hard to see someone you love, loose their memory.
Martha W.
Roanoke, Va
My heart goes out to every person dealing with or having lost a loved one to the ravages of Alzheimer's. I am fortunate enough to be a volunteer in an Alzheimer's Hospitality Room. We offer the opportunity for a caregiver to leave their loved one in a caring and stimulating environment for 4 hours a week, 3 days a week. This environmental change is stimulating to the Alzheimer's patient. They make new friends and laugh and sing. We do mild exercises that help maintain muscle tone, alertness, and communication. The Best Friend's Approach is practiced. If you are unfamiliar with this approach to caregiving please consult your library. There are books available that explain the approach. It is gentle and loving. If you are trying to give care alone please search for support. I love our people. They are wonderful individuals. Some of them are able to communicate with only limited difficulty and some are almost unable to make any of their wants and needs known. God Bless....
Kay L.
Florence, OR
As a long term care worker, I have experienced this dreadful disease from the other side. I have been there for the families and the loved one. I have listened to their stories and have come away a very enriched human. I have learned to enjoy the moment, and not dwell on what might, could, or should of been. I feel these are God's special children and should be treated as such.
Jo W.
Orwell, OH
My beautiful, talent, intelligent Mother is now in heaven taking charge, I'm sure. She loved her family, and told them so. I miss her terribly as she slipped away last Nov. 2005 to go home to the our Heavenly Father. She loved to sew, craft, embroidery, crochet, garden, host parties, & shop. She loved being with my sister & I as we loved being with her. We kept our sense of humor which helped us all tremendously. We prayed, went to church, went to lunch, and carried on "life as usual". We celebrated every occasion and included her in everything.
She spent the last three years in a wonderful Alzheimer's facility and was loved by all. She felt safe there and it became her home. We decorated her walls until there was not a square inch of paint showing, with pictures, tapestry, shelves of dolls she had crafted, dollies she had crochet, and donned her bed with quilts she had made. Her curtains were embroidered flowers trimmed with beads. We put pictures of Alan Jackson in her room, her favorite country singer. We brought her favorite recliner, white dresser, full length mirror, and so many clothes & shoes. She was proud of her room and often called it her condo. Totally enjoyed doing it, and her room was a "show place" for visitors.
Mom, I love and miss you so much I wouldn't have traded a day we had together. "Happy trails until we meet again."
Your daughter,
Kathy F
Largo, FL USA
My mother passed away 2 years ago. She able to live alone, with help, for 1 year, spent 5 years the houseguest of her 3 daughters and 2 in a nursing home. The one thing I would like to share is that all of us who are left behind and may have this disease in their future should talk to their loved ones now. We never had that conversation with her and we still feel guilty that we placed her in the nursing home. My children have been told to find me a room with a view!
Jessica L
Westminster, Ma USA
My mother-in-law died in February 2006 after a very long battle with Alzheimer's. Except for the disease, she was very healthy, taking the disease to the very end stages. She was a very active person being an avid knitter, also sewing and quilting, even finishing some baby quilts after we knew she was affected with the disease. It was difficult taking her to a nursing home (my father-in-law had taken care of her for years) but, it was a complete relief to know that she was very well taken care of by a wonderful & caring staff. My father-in-law joined her in the nursing home and just recently moved to assisted living. We were very fortunate that he was able to share a room with her and be with her until the end. One thing family members need to remember is taking care of someone does not always mean keeping them at home. You must also keep a sense of humor! Sometimes you just have to laugh, not out of disrespect but, to keep your sanity. My own mother also has Alzheimer's...it just doesn't go away! Keep your faith and remember the good times.
Kay
Hilliard, OH
I am in the beginnings of this mind robbing disease and as a health professional I know what is ahead for me. I have told my loved ones that they are to only look after me as they can and not to feel (ANY) guilt when the time comes that they can not do so. I have worked with too many people to even want to put my loved ones through what is ahead but when it is too much for them...and it will become so...they are to let go and put me where I will be safe even if happiness may not show...I will be knowing they are OK.
Linda D.
Jacksonville, FL
Four years ago I noticed my mom changing before my eyes. Her whole mannerisms changed and I asked her to go to the doctor and let me come with. She hid her problems with her memory so well that I had no idea what was going on. Two years ago she was diagnosed with "depression" and this year she was finally diagnosed with Alzheimer's. I am one of the "sandwich generation" home with my eldest daughter who is mentally and physically handicapped and now I have my mother living with me. I want to tell people to just do what you can, but don't overburden yourself because it will cost you in the end. I plan to keep my mom at home with me as long as it is safe and feasible and then will promise my self not to be hard on my self if I can't keep her with me any longer. That seems to be the hardest part for me so far. Our parents cared for us, so shouldn't we try to keep care of them? I am fearing the future, if she "changes" to become bitter or physically or verbally abusive which I have seen happen. That will be the saddest moment for me I think. But I am staying in the moment and taking it day by day.
Robin
Anacortes, WA
MY MOM HAD ALZHEIMER'S. IT WAS SO HARD TO SEE THIS PETITE, BALL OF ENERGY HAVING THIS DISEASE THAT I COULD'T HELP HER WITH. I HAVE OFTEN SAID THAT IF SHE HADN'T LOST HER SIGHT, WHCIH CAUSED HER NOT TO BE ABLE TO CROCHET,WHICH SHE HAD DONE SINCE AGE 4 OR 5, DO HER CERAMICS, HER NEEDLPOINT SHE WOULD HAVE BEEN SO HAPPY. NOW MY OLDEST DAUGHTER WHO WILL BE 48 ATE THE END OF THIS MONTH SEEMS TO HAVE IT ALSO. MY PLEDGE IS TO MAKE A QUILT IN MY MOM'S MEMORY. SHE DIED THREE DAYS BEFORE HER 93RD BIRTHDAY. SHE HAD HAD THE DISEASE FOR 10 YEARS.
JOANNE L
SACRAMENTO, CA
To All of you who have Survived your loved ones with Alzheimer's....those who may be going through it now.
I give you my courage...
I give you my strength...
I give you a piece of my heart..
I give you a giant hug that will never end...
I give you a never ending prayer, that will keep your mind at peace...and know that your parents, or loved ones, knew that you loved them. Those of you who are working through what must be a horrible time, please accept my prayers..I will pray for all of you.
My mother taught me something growing up ( I am 56 years old) "God only gives us, what he thinks we can endure."
I told God in many a prayer, to dish me out whatever he wanted...just never ever take one of my children or grandchildren. God has challenged me, I've lived through all the things I didn't know I could possibly even know about, never mind living through them.
But, I do without a doubt, believe in God and Him answering my prayers. I don't know about Alzheimer's, not like the people on this site. I don't claim to begin to understand it, but I will tell you this: something brought me to this site, and I don't sew, I never liked sewing (on a machine, however I do like sewing little things by hand.) So, why I ask you, am I here? Love brought me here, through a friend I care dearly about. So it's, exactly what I said, I give you all that I can...
Nancy H
Clovis, CA
When my mother was diagnosed with Alzheimer's, I wrote a collection of poems to help me deal with the situation. I eventually learned to accept her "reality" and to find reasons for laughter. This poem expresses my concept of the disease - one of continued loss.
Loss
Alzheimer's is a cruel disease.
It takes our loved ones from us prematurely.
It is not a death,
But a divorce.
There is grief with both.
Yet we continue to be confronted with a physical presence,
A reminder of what was...
And of the potential,
However unrealistic,
Of what could be,
If only....
we could make them understand.
Eileen J
Louisville, KY
My Mum died on 4th July, 2003 aged 85 years, after a 5 year ordeal with Charles Bonet Syndrome (which causes the person to hallucinate and leads to dementia). She was so frightened by these constant visits from people who in the beginning she knew could not possibly be there. At least when she developed dementia she was no longer frightened because she believed what she saw. My Mum was a fun loving happy woman before these diseases set in but within a short time she became depressed and confused. Some of the letters on this forum speak of happy experiences, but ours was not. I had a terrible time dealing with the change in my mother's personality and with the fact that she forgot who I was. It did not take long after she had passed away for the pleasant memories of her to return. I miss her so much but I missed her more while she was suffering from this insidious disease. I don't know if there is a similar project here in Australia but I wish you all the success in your effort to raise funds to find the answers to defeat these debilitating range of diseases. My brother aged 65 years was diagnosed with Alzheimer's this week, so it appears my family's sadness will continue.
Marjorie T Sydney, NS Australia
I have just discovered this site and the Alzheimer's Art Quilt Initiative and once again, i am amazed at how many people this disease affects! My mom has Alzheimer's and has been diagnosed for about 4 years. She remains "pleasantly confused" and although she thinks i'm her baby sister instead of her daughter, I am so thankful she still knows my name and is happy to see me when I visit. She has lived in an Alzheimer's facility for about 2 and 1/2 years and at first, she and my sister and I had a terrible time adjusting. But, within a few weeks, she did adjust and now is very content and for that again, i am very thankful. My heart and prayers go out to anyone dealing with this devastating disease and the best advice i can share is to contact your local Alzheimer's Association. They are a wonderful, compassionate group and have invaluable information to share. Also, do anything you can to raise money for Alzheimer's research! The Annual Memory Walk is a very easy way to raise money and awareness for this very worthy cause. I am a beginner quilter but hope to participate in some way, whether making a quilt to donate or to participate in the online auction; what a fabulous idea! Also, will be going to the quilt show in Nashville, TN in August and am so excited that i will be able to view the quilts! May God bless all those with Alzheimer's and their caregivers!
Kathyn
Louisville, KY
My brother and I figured out that our Mother had Alzheimer's a long time before we had her officially diagnosed. We took care of her as best we could. She was very proud and never admitted there was anything wrong. She told me she could not have Alzheimer's because she could not spell it. I took meals to her for about a year and went with her to parties. Her friends were wonderful to continue to invite her (and me) while she could still enjoy it. My brother gradually took over her finances and she began to confuse him with our father. That became quite poignant and it was difficult for him, but he played the part when he could. He changed light bulbs and I helped with her plants. She called me one night and said that Mick Jagger was in her bedroom and she couldn't get him to leave. I went right over—the batteries in the remote were dead and she didn't know how to turn off the TV. My brother and I explained to our families that we HAD to keep a sense of humor about it all. After her diagnosis, we got her around-the-clock care. Since she never accepted that there could be anything wrong, this did not work extremely well. We knew she was fed and driven where she wanted to go, but she would not let anyone into her bedroom. After I noticed bruises from falls, we admitted her into a dedicated Alzheimer's facility. She was LIVID for a while, but settled in and thought she worked for the activity director. We went by often to visit and see if she needed anything. As she forgot who I am, she would tell me she couldn't visit, that she was working. As long as she was happy, that was fine. The part of her that was my mother was long gone. Now she is in the final stages. Twice she has been so bad that we thought it was the end. Twice my daughters (in their 30s) showed up and fed her ice cream and she recovered! They joke that she can still rally the troops! She has had a good life and we are so fortunate that she has had such good care. My husband and I recently moved to another town--not without some guilt, mind you--and I see her less frequently. I know I was there when she really needed me. I know we have done what we can to be sure she was both safe and comfortable. To know that she was happy is an added bonus. Each patient is unique. Alzheimer's is an Alternate Universe. You do what you can do. I can quilt. It is my privilege to participate.
Gay O.
San Angelo, TX
What a wonderful idea for a quilt. It's 5 years since my Mum died. She had Alzheimer's for a number of years and unfortunately I was unable to continue caring for her at home. Placing her in a nursing home broke my heart, and I share the guilty feelings expressed by some of the other contributors to this site. But, my Mum wouldn't want me to feel bad and, in spite of the negative experiences there were lots of positives. I think we sometimes tend to focus on the Alzheimer's part of a person's life and to forget all the good things that happened before the illness began. Although the illness caused a lot of sadness there were also some amusing episodes and our love for each other moved onto a different level. I think the beautiful quilt is an opportunity to enjoy (and sometimes cry over) memories but also to incorporate them into something beautiful which, like our memories will last into the future. I wish there was a similar project here in the UK.
Susan
Barnsley, York UK
Seems my mother started Alzheimer's about 6 1/2 years ago. She has been in a nursing home for 5 years now. She doesn't say anything anymore, but still laughs and smiles. She doesn't know us, other than people who come to visit. One of my last good memories before she went in the home, was when I took her shopping early one Sunday morning. When we were done, I suggested lunch. Of course she bickered and complained but we went to Friendly's and we ordered pie and ice cream at 10AM. She was so excited and I was happy to please her. But the looks we got! Still laughing and grinning!
Lori K.
Enfield, CT USA
Thanks for giving us this chance to share our feelings. My mother died on January 1, 2005 after a long battle with Alzheimer's. I don't know when the disease began but looking back, we think maybe 5 years prior to her diagnosis. Mom was a homebody, not very active, so it was hard to see a difference in her behavior until it became really bad. One day she asked me if my two daughters were my children. That is the definitive moment for me, when I had no doubt that she had AD. It was before her diagnosis. She lived with my divorced brother until she became very ill one summer and was in the hospital a number of weeks. It was then we decided to make the transition to a nursing home. I truly wish that we had contacted the Alzheimer's Association for help. We felt so pressured to get her in a NH, I think we made a hasty decision because of pressure from the hospital. Once there, however, she declined rapidly. In many ways, I am grateful that she did not linger with this awful disease for years. She was not one of the happy, placid AD patients. Mom suffered from extreme anxiety. She was fearful most of the time. If left alone for any amount of time, she would begin screaming. She was very manic & sometimes aggressive. She rarely slept, in spite of huge doses of anti-psychotics and anti-depressants. She hallucinated, fanaticized, believed her mother was still living, wondered why long dead relatives would not visit her, begged us to take her home. It was hell for all of us while she was alive and hell after she died, for me. In spite of knowing she was in a better place, out of her misery, I lived with the guilt that so often accompanies such a disease. Did I do enough? What would she have done for me that I didn't do for her? Did she think we had abandoned her? It is just horrible. Even now, I wonder. I miss her and I hate this disease. I pray they find a cure, and every year, participate in the Memory Walk to try and raise a little money to help the victims and families who suffer from this cruel, relentless disease.
Deborah M.
Mableton, GA
My mother just went to heaven on May 12, 2006. She was diagnosed with dementia in October of 1999. I was her 24/7/365 caregiver. She was my five foot two year old. We were blessed by her up to the very end. She would laugh and sing and pray. She loved eating, especially ice cream. She was thrilled when my sister would come home from work. She would raise her arms for a hug and say "There you are!"
Mother was a quilter. She has several quilts with the Illinois Historic Society. She would have loved to contribute her quilting skills to your endeavor. Bless you.
Linda Lake Villa, IL
My grandmother, Bertha, was an amazing lady. She was the sole care-giver for her husband Edwin. He lived at home as long as she could keep him safe. It became very hard for her as he was a farmer and farmed all his life. This continued even through his Alzheimer's —even though it was at the end only in his own little world. His problem wasn't temper but wandering and repeated questions and/or conversations. When someone has to be around another for an extended period time, it can be very wearing on a person mentally to answer the same questions continously. As time went on my grandmother had to place him in a nursing home. I know that this was a source of great guilt and self doubt for her. Her health would become worse as she couldn't sleep for fear that he would get out and become lost or hurt. The other concern for her was that his family (sisters/brothers) were not supportive and they thought that she should have kept him home. I hope that she made peace with this before her death. During his time in the home he eventually developed a bedsore on his coccyx and other problems. I had the opportunity to visit with her and offer her some advise. I am a nurse so she felt she could talk to me I suppose. She was questioning whether or not to put him through different tests. He was at this time far into his disease process. Here is the advice:
WILL WHAT YOU FIND MAKE A DIFFERENCE IN HOW YOU TREAT HIM MEDICALLY? If you find cancer will you treat it? Will it be worth it to put him through all of the medical procedures and will it improve his life? If the answer is no to these then just keep him comfortable and not put him through the stress and changes. I know that she decided to keep him as comfortable as possible and give him dignity. Also, this his health was declining at this time. I think she made peace with it. Her son & daughter helped as much as able and my dad visited often. She was the "mom" who raised us with my dad; she was my friend and my hero.
Carol G.
Lansing, IA
These patients are and always will be special lambs of God. They may in time forget the Lord but they should be told that He will never forget them...
RoseMarie M.
Milton, VT
I was a caregiver for over 10 years for my husband Chuck who passed away 1-17-04. My heart goes out to all that have a loved one with Alzheimer's disease. If I can help in any way email me..... God Bless
Carolyn Haynali spokesperson & founder
www.caregiversarmy.org
Berlin Center, OH
Thank you for this page to reflect on personal experiences with Alzheimer's disease. My Mother, Marjorie Neal Duncan, was a lovely, talented lady who gave much of her life after my father's death in 1974 to visiting the shut-in sick, hospitalized, and those in nursing homes. Her own aunt was ill for many years with Alzheimer's disease and she served as a helper before it was necessary to place her in a nursing home. At that point she visited her a minimum of twice per week until her death. She translated her own loss into service for others who were ill and dying. In her church, she helped develop a group of ladies committed to regular visitation of the sick and their families. This group developed in the mid 1970's remains active today.
While Mother made only one quilt that I know of, a yo-yo quilt, made at age 13 in 1928. Today that quilt is in the textile collection at the University of Alabama Clothing, Textile and Costume Design Museum, located in the Mary Harmon Bryant Building on the campus of U of A. She was a needle worker and seamstress from an early age and received her Bachelor's degree in clothing and textiles at the University of Alabama in Tuscaloosa, AL. After teaching home economics in her hometown, she went to New York to work at the textile company A.M Tenney, Co. It was while working there that she received a scholarship to attend what was then The Philadelphia Textile Institute where she was one of three women in her graduate class. During WWII she returned to NYC and A.M. Tenney to work with developing synthetics for the war effort. All through her life she loved textiles, needlework, and sewing. Although she did not continue with the weaving she learned at the Philadelphia Textile Institute, her design books are helpful to university students today and her love of hand woven textiles continued throughout her life.
In about 1960 she had a severe head injury sustained in an automobile accident. After that injury, she had difficulty with many cognitive tasks. Her mother and husband helped her and disguised this disability from friends and even family. Alzheimer's is quite prevalent in her paternal family, at least 4 consecutive generations that are known. She slipped into Alzheimer's quite slowly and silently and was alone to make important decisions and navigate life. She was vulnerable and she was often taken advantage. She was unable to understand or think through complex situations and later even simple ones. Her refined social skills masked her illness from many and others, especially extended family, were impatient with her and often excluded her in family gatherings and information. As she declined and moved from her home, these family members acted as though she was already dead. They did not realize that Alzheimer's patients often comprehend much and recognize many, especially those known in childhood and young adult years. They could not comprehend that for the only caregiver, her daughter, that a word of comfort or concern would have been a great gift. These words never came. They would have been surprised to discover that although much of her memory was lost, she remembered family members and she never completely lost her grace and social skills, maybe because they were so strongly imprinted in her brain and life. Perhaps family members did not want to face that another generation was marked with Alzheimer's disease, perhaps they were busy and self involved, perhaps they lacked the wisdom to know exactly what to say or do. Alzheimer's disease is the most all consuming disease for the caregiver. The patient is vulnerable at all times and at risk for falls, anorexia, stroke, and neglect or abuse by nursing home staff even in the most modern and expensive facilities. The phone can ring at any moment and the concern is always there. It is like caring for a baby, except that the baby does not grow and develop new skills, she loses some skills each day. Taking my mother to a physician's office or the hospital was a major and traumatic experience. I had to enlist friends to go with me, so that I could drive and someone could watch my mother. As she became progressively worst, a nurse was hired for this task. Routine tasks became major hurdles to jump over. Stress and her needs became a lifestyle for my husband and me. My mother had handled her money poorly and was often the victim of her vulnerablity. The cost of care for an Alzheimer's patient is astronomical and I worried that she would outlive all financial resources. She was blessed to have very good physical health until months before her death. She fell many times as she paced for 18 hours a day looking for family members and friends. However, she was blessed with good bones and only broke one small bone in her foot during her entire illness.
Major declines to a lower plateau were unpredictable. There would be no warning, when it occurred; one had to be ready for immediate changes in care and location of care. Often there were no available openings in these special facilities. Often I was told that they did not take ambulatory and confused patients, only confused patients who were bed-ridden or ambulatory patients who were of sound mind. It was a hard lesson to learn about the lack of resouces available for Alzheimer's patients. Fortunately, finally the Methodist Church's retirement home and nursing home with special facilities for Alzheimer's patients had an opening for Mother. She lived there her last two and a half years and had excellent care. However, during a bout with pneumonia, we brought her home and she died peacefully with Hospice staff, nurses, and her daughter and son-in-law with her. She died in complete peace and I believe that she knew she was home. Several months before she had a major fall and was quite bruised. She told me very clearly, that 'heaven would be better' as she pointed to her bruises. Yes, heaven is better. She died in my home in Alabama 12/7/1999. I am learning that though she has been dead for almost 6 years, the caretaker has great amounts of physical and emotional healing to overcome.
My mother does not have grandchildren, siblings, or neices and nephews. It is my hope that she might be remembered on this very special web page and her lifelong love of textiles, weaving, and needlework will be documented here. Marjorie was a very special person who graced her friends and family with the elegance and love that I hope will be long remembered.
God bless each caregiver and person who has this life altering disease. May God bless you with strength and comfort. I pray that researchers will uncover treatments, cures, and effective prevention for Alzheimer's disease.
Marion R.
Broken Bow, OK
March 11,2006 was the 1st anniversary of my Mothers death from Alzheimer's disease, after 7 years of suffering. Oddly enough, this is the one disease where the family of the afflicted person heartily wishes for that person to get worse. At least, I did. Since the onslaught of this horror on my Mother, 8 years ago, the happiest day of my life was when, one day, I walked into the nursing home to visit her and she actually smiled at me, with genuine pleasure yet!! I knew she had finally gotten to the point where she did NOT know what was happening to her anymore and she was content. Alzheimer's is such a horrible disease because the person who succumbs to it can have it for years and all the while they KNOW what is happening to them. Can you just imagine the absolute horror of knowing, day in and day out, that your brain cells are slowly dying and there is not a darn thing you can do about it??? Except, of course, to get to the point where you are so bad you don't remember anymore. Then you can be content. The last 3 years of her life she was relatively happy. Although our faces were familiar to her (my husbands and mine) she forgot our names. But you know what?? She had always loved music, for humming along with and dancing to and right up to about 2 days before her death, she remembered most of the words to all of her favorite songs. We would take her outside, in a wheelchair, to the nursing homes Ice Cream Parlour and while we sat and ate our ice cream we would sing, loudly. Most of the other patients in there with us would join in, even. Mom knew all the words to "America The Beautiful", "Blue Skirt Waltz" and "Tennesee Waltz" to name a few.
So, for all you people out there who have a loved one with this horrible disease, my advise to you is "Sing to them, sing your hearts out, long and loud!!" You might be surprised, pleasantly I hope, if your loved one just starts singing along with you.
Karen K.
Phoenix, AZ
I'm a nurse and have worked in nursing homes most of my life and worked with people with Alzheimer's. It is a very sad disease and effects people in different ways. I have worked with families that are devoted and some that drop mom or dad and never come back. It is very hard on the families. Each person is different and the nursing staff looks for ways to take care of each person. It is a challenge for the families and the medical staff. Keep up your good work. Maybe some day we will fine a cure for Alzheimer's and cancer.
Lori T.
Fort Benton, MT
My wonderful Aunt Edith was a part of my life growing up. She was a marvelously strange and very humorous person, and I loved her dearly. When she was diagnosed with Alzheimer's both her children abandoned her. So I took over. I took care of her for just over 10 years, with not one single visit from either of her children, one of which was a doctor no less. When my Alzheimer Aunt, as everyone called her, died two years ago, ALL of the estate went to her two children, with me getting nothing. Not a big deal, I had my wonderful Aunt!
Glenda P. Baton Rouge, LA
The guilt was horrible.....couldn't I have done something more. What warning signs did I miss? A complete change in mom's personality convinced me that I had lost her to a different (internal) world. She slapped, pushed and hit me, behaviors I had never known from birth to age 56. Doctors diagnosed Alzheimer's.
About 3 years later, in May 2002, I lost mom again to a better life. She had become a stranger to me as I had become to her. The behaviors she exhibited ceased, but the pain of losing her twice continues. Alzheimer's is a horrible disease.
Sandy E.
Boulder Junction, WI
My mother at age 48 started displaying some Alzheimer-similar symptoms. But it was 1982 and no one was sure. Twelve years later she died, but we're still not sure that was the disease she suffered from. I was 15 when she became ill and 27 when she died.
There were so many changes for both of us in that period, I feel like it has taken the next 12 years since her death for my siblings and me to even begin to comprehend her loss and ours, to understand the incredible stress placed on our late father, and to learn to be a family without her at the hub.
Mom never quilted but loved to sew and was my earliest teacher of all things needle-related. In college, I had stopped all my needlecrafts, thinking my time too precious and sophisticated as I flung myself into preparing for a career. How silly. Two years after her death I took a quilting class and was hooked. And now, when I find a way to steal time to sew, I feel I am the closest to her, doing something I know she would have enjoyed and making something she would have appreciated like only a fellow craftswoman can.
Just this weekend my sister passed back to me a cross-stitch Mom had done for her mother. I'll clean and remake it, making it my newest heirloom. She is missed everyday.
Joni J.
Tallahassee, FL
We lost our mother in law to Alzheimer's about 10 years ago. It was curious to see her disappearing, then the mood swings first she was fine and docile then angry and in attack mode. Then she "forgot" how to hold her fork and eat, our son, at the age of 4-7 "helped" her by holding her fork and taking it up to her mouth then saying, "Grandma, now open your mouth and we'll put the food in."
My father in law sent her to a nursing home for the last three years of her life. It was sad, but a relief when she died. Just two years later, our father in law died. We spread their ashes out together.
Margaret K.
Berkshire, NY
Unfortunately my experience with Alzheimer;s is watching what my mother is going through. She was diagnosed when she was 65 and went into care three years later. My dad just couldn't cope with her wandering and getting lost. There is just my brother and myself and my brother has chosen to ignore the whole situation with mom. So that leaves myself and dad to deal with mom's care. Now mom is in the final stages and that is very hard to see for us. She was once so vibrant and tended her beautiful garden - it breaks my heart. Dad is ever vigilant and goes to the care facility twice a day even though there are days on end where she won't eat a thing. He has given up everything even his home and dog. They just celebrated 50 years of marriage and it was a very hard day for dad. I remember their 25th was such a big party and celebration and here it is 25 years later and all we could give mom was a little corsage that she didn't even know was for her. I cherish every day she is on this Earth but am prepared for the time I visit her to be the last. On that day I will rejoice silently because she will be in the loving arms of God.
Heather K.
Calgary area, AB Canada
My mother has been diagnosed with dementia and it is so hard to watch the woman who raised me and my three sisters become a stranger. Who would have ever dreamed this would happen? What's hard is to understand WHY? She is a good, kind, strong and caring woman who raised all of us to be strong and caring. But to watch her retreat into a whole different world is probably that hardest thing I've ever had to do.
Suzanne M
Hayward, CA
My dad was diagnosed with Alzheimer's 3 years ago in February. Without the support of the Alzheimer's Association I honestly don't know where we (I) would be. Dad has shown me his amazing ability to be brave in the face of this evil disease. When he was first diagnosed he said "this is the hand I've been dealt." I on the other hand was very sad and angry (but put on a smiling face for him.)
Utensils are now very challenging for him and he needs assistance getting dressed. Still he smiles and laughs. If I can do nothing else my mission is to keep him in good spirits. Hardly enough, but all I can do.
With the help of the Alzheimer's Association and other caregivers we have met in our support group things are easier to understand. We all understand each other, support each other and protect our loved ones together. Oddly enough, I have learned more about the kind of person my father is since he was diagnosed. He is an amazing person.
Sadly we lose our loved ones with Alzheimer's slowly, one loss at a time. The tears are there, but so is the laughter. A sense of humor and laughter is a huge help during these times.
Last week dad was having a difficult day and I wanted him to sit and eat. He said OK but wouldn't sit. So I asked him to dance — and we did. We laughed together. He felt better and he sat down and finally ate.
God bless all of you and your loved ones. If you haven't already contacted your local Alzheimer's Association, PLEASE do so. They are there to HELP you and your loved one.
Lea
Port St. Lucie, FL
My husband was diagnosed with Alzheimer's disease one year ago. In 1993 our 23 year son died tragically and my husband and I were each others strength. In 2000 our 35 year old son died in a boating accident - can you possibly bear the loss of two children? My husband and I held each other together, again. Now I see I am losing him in small steps. We are shoving into life as much as we can, while we can. Last week I bought my first video camera so that I can make videos of friends, family, and our life. I think they will be useful. I gather great strength from my love of art and sewing.
Colleen L
Kitty Hawk, NC
My mom, Valora, died a few years ago after having this terrible affront to life and my dad taking such good care of her, even tho she called him "the man who lives here." They'd been married for 60 years.
It's heartbreaking to read your other stories, but no one has mentioned what concerns me the most. For so many other diseases, there are things you can DO to avoid them; stopping smoking, losing weight, exercising. But for this, as far as I can tell, there is nothing we can do but wait to see if it strikes the rest of us in a family.
That's why this quilting project is so important; at least it's something I can do, both for my family and for others.
Thanks so much for this opportunity, Ami.
Annie N. Chicago, IL
My father had Alzheimer's and passed away at 66 years. My Mom cared for him except for the last few weeks of his life. My parents were extremely close and related to each other very well. They had five children and a good life. My parents saved carefully for their retirement but it never came. Dad was too sick before his retirement. He was a very well respected man by his family and co-workers. My Mom asked me repeatedly...Why him?...I had to think about that and concluded that Dad had always looked after us. It was now our challenge to find our own strength and look after him and still have that respect for him that he had earned.
I have learned many things from my Dad even more after his death and continue to make sense of the things he told me as I grow older and wiser.
From the nature of his illness and death, I learned not to take anything for granted and live for today because tomorrow may never come.
Stephanie W
Nordegg, AB Canada
Alzheimer's took my sister after a long 10 or more years. She had been a wonderful artist and was one of the sweetest women I have ever known. I too, have found that my great-grandmother died with the dreaded disease, and worry about myself and my eight grandchildren and their children too. One of the hardest things to deal with in Alzheimer's is the loss of your loved one truly years before they die. Only bits and pieces of the original being remain while the dear one fades more and more while dealing with aggressive or unusual behavior, uneducated people or inadequate help is exhausting and heart breaking. The good news is that research shows there is great help on the way and it's most reassuring to know there could be real medical breakthroughs within the next three years.
In the meantime, respite care and kindness are as important for the caregivers as they are for the victim of Alzheimer's.
Quilters can always help with their quilts and prayers.
Melinda Y.
Seattle, WA
I am a quilt shop owner here in the UK, My husband of 60 was diagnosed with AD 6 1/2 years ago, although we now know he had it for 2 years prior to that. We managed to travel quite a bit in the early onset stage and often look at the photos of one of our lovely trips to New England in fall, he loves those photos because of the lovely tree colours, we did some hiking on the Appallation trail and I made a quilt to commemorate that which I called a WALK IN THE WOODS. To anyone out there who is a carer , just try to keep a sense of humour and take it day by day. He still know us and when my lovely son comes through the door to see his dad Dick my husbands face lights up and is a picture. He is not the person I married 40 years ago but just sometimes a little bit of him shines through.
Sue
Cheltenham, gl UK
There were so many touching emails. I just had to say to all who wrote thank you. My dear mother had Alzheimer's at age 89, like her own father who lived until 92. She had always been an active person, who could out work people half her age. She did many thingslike: sew, quilt, garden, and did all types of needlework. She passed away May 14, 2005. We were very close. My father had passed away in 1978, and I was an only child. It was hard when I had to make a tough decision to put her in a nursing home. On the drive home, I cried most of the way. I had a chance to talk with a few of mom's siblings, who understood, and thought it was for the best, but I still felt bad, just the same.
I would visit her often. She was in the nursing for sever years,in those years, I could see her stages changes. She got to stage where she didn't talk, she would use non-sense words. She never got the flu, or had to take other medicine and the staff couldn't believe how healthy she was. They were so good to her and am glad to have this small nursing home. My mom passed away early morning. The nurse felt bad, because she had just checked on my mom, and then the next time she was gone. Since my mom was a early riser, it was just like her and I knew my mom would go just like that.
For those who have or had loved ones with Alzheimer, remember them for all the good times. Remember the joys and laughter, do as much with them as you can. There was an ad used - which comes to my mind in this matter- A mind is a terrible thing to waste, but that is what happens. Seeing the stages- first they get confused, upset, mad. They still talk, but words get changed, misplace for others.
Next stages- revert to later years of their life- they might not remember grandkids, their children, or spouses. They will remember their own childhood, but then that gets mixed up also.
Later stages- are the hard ones to go into, but very sad.
I guess it was like change from an adult back to infancy.
Hopefully they find help for Alzheimer's.
Colette S.
Forest City, IA
I lost my mom to AD 10 years ago this June. My sister and I visited her at the cemetery today. I live in IL, and Mom is in NJ, so we don't get to go very often. I have recently found out that my mother's mother (my Grandma) and her mother (my Great Grandma) all had AD, so the genetic link is very clear. My daughter is an only child, and I wonder how she will be able to handle all of this, especially since I am a single parent. I hope that Ami's work will help bring awareness of the disease to many, many people, so that Kiersten will be able to find help and support when she needs it. I miss my mom every day. My Dad took care of her until the last year of her life, when she was in a nursing home. Even then he went to see her every day. It was a hard choice, but it was the right one. And we were very fortunate that she never fought the hospitalization, never cried to go home. She was happy as a clam until the day she left us. That was a true blessing. My advice? Pray every day for the strength to get through one day. Take it one day at a time. That's what I do, even now.
Lynn F.
ZION, IL USA
My mother died from Alzheimer's in August, 1990. She had the disease for at least 10 years.....and of course didn't know me or my siblings for such a long time. But one thing I remember and cherish happened at Christmas time a couple of years before she forgot who I was. She had had an anxiety attack on Christmas evening and had become totally disoriented, and insistent that she should be allowed to "go home" (a frequent desire, even when she was home!)
Dad had a hard time that night getting her to settle down and go to sleep. The next day she was much better, and we were sitting together on the couch when she said to me "I suppose your Dad told you about the dumb-dumb thing I did". And when I replied "Which dumb-dumb thing?" She laughed so hard. She kept her sense of humor for a long time into this ordeal. I miss her so much, because I lost her so long before I truly lost her.
Kay M
Beaverton, OR
My father-in-law died in February of 2004 from Alzheimer's at the age of 92. He stayed at home with us, it was both tough and very rewarding. He never fully understood why he was there, was constantly trying to go home. Disappeared on an occasion or two, scared the life out of us. The last 8 years or so, didn't know his own son, thought he was the help. Though he always knew to trust him, right till the very end. There were days we were so frustrated and tired, but looking back, we're so very glad that we got to take such good care of him at home. We honestly think he lived a longer, better quality of life. Even at the very end, he would have an occasional burst of "sanity" and make total sense. I look back on those moments as miracles. They still make me cry. Though there are tons of times I was so very mad, I'm so very glad I was able to help take care of him. My own father died at 48 from a sudden heart attack, no goodbye, at least we had a very long goodbye. I pray that the research zooms ahead and they find cures or at least medicines that hold off the progress of the disease.
Donna W .
Warrenton, VA
Things happen in strange ways. My husband and I were going to sell our home after my step-daughter graduated from high school. We were going to buy a motor home, travel and sell at arts and crafts shows. When we realized we still needed a home base, we remodeled my mothers basement and garage into an apartment for ourselves. I thought it would be a way to see her more often. Bought the motor home and started traveling. We realized that mother was getting very forgetful. I took her to the doctor and he put her on Aricept. After about a year, he added Namenda. She has also had problems with depression and has become extremely negative, even though she has been well taken care of and comfortable her whole life. She is also starting to have panic attacks every few days. She doesn't want to do anything but sit and do crossword puzzles so I don't have to worry about her wandering, but she is segregating herself from her friends. I have an appointment with a social worker that deals with geriatric psychologists to see if we can make her more calm. I read all of your stories and it frightens me about what is to come. At least we are here to help her. If we had started traveling full time, we might not have realized the extent of her memory loss.
Sue S.
Nashville, TN USA
My great-grandmother, my grandmother, a great-aunt and my aunt all suffered for years with Alzheimer's disease. A cousin, whose mother had a fatal heart attack, said to me some time after my mother died from cancer, "I suppose this will sound like a pretty cold thing to say, but I think you'll understand. I think *our* mothers were *the lucky ones*." Not that I would wish cancer on anyone, but I *did* understand. They were the only women in several generations of our family NOT to get Alzheimer's.
I was very close to my aunt, my mother's only sister. It pained me greatly when she, not only didn't know me, but insisted she'd never had a sister. She still had short lucid periods then. The last truly enjoyable time we spent together was at a quilt show. I don't know that she had the foggiest notion of who I was or where we were, really. My aunt was about the finest seamstress I've ever met. Although not a quilter herself, she was interested in quilting (we had family quilts) and loved color and fabrics. She enjoyed paging through the big family photo album I'd brought hoping it would jog her memory (it didn't much), but her eyes just lit up when I brought her in to see all those beautiful quilts! Her attention span even improved considerably as she listened to the stories behind some of the quilts. I'm glad I took pictures.
Janice F.
New York, NY
My husband has Alzheimer's. I keep thinking that I can have conversations with him, but come up short because he really cannot converse any more. It is sad to see him lose his abilities, inhibitions, and self respect. It is hard to have a relative with AD, but when it is your spouse, it robs you of the chance to share the pain with your significant other.
F.
Ausitn, TX
My mother was officially diagnosed with Alzheimer's in spring of 1999. Up until then, the memory and repeating of stories was attributed to her quadruple bypass surgery. She would laugh it off when she realized she had told the story already. In June of 1999, her brother died and when we returned home, she became sick with bladder infection. Doctor put her on medication for that and started her on Aricept. Bad idea!! She had quit going to her senior center, to the beach or to walk in the azalea gardens near her home but would tell me she went everyday. The day she asked my son to drive to Norfolk to pick her for a visit (she loved to drive) told me something was wrong. We placed her in nice assisted living, her own apartment in a medically controlled environment. She is mid stage right now. Since moving her, she has quit painting or quilting. Her quilts are stunning and perfect. She will tell visitors that she has painted the pictures on her wall or the quilts in her room since she has been there, when in truth, they were done prior to illness. At first she had quilt I had pieced on her frame to quilt-half done now. She will never finish it but when I do, it will always be a memory I can cherish.
Cheryk P.
Upper Marlboro, MD
Oh there are so many things I could say about Alzheimer's. I lost my mother and an uncle to it.I have worked in nursing homes for over ten years and I have known many patients in various stages of the disease. I have known their families and their pain. I'm sure that this disease creates so many frightening and insecure feelings to its victims. They are so afraid and change is so disruptive to them. I think it might feel like being lost.
My mother and my uncle suffered many years until they no longer remembered how to eat and swallow. They were gone from their family for years before death finally took them. My mother was my best friend. It was so hard for me to go see her after she forgot who I was. My heart goes out to all of you who live with family members who have this disease. I think that I would like to give you two pieces of advice as a result of my experiences. One is to never feel guilty. You will do what you must do. If putting the loved one in a nursing home is necessary for their care that is alright. If they are angry and argumentative remember it is the disease not you and not your loved one. The other thing I would like to tell all of you especially the husbands and wives. Do not jeopardize your own health to care for the other one. I watched my aunt die of cancer immediately after my uncles death. She cared for him at home as long as she possibly could then she spent her days at the nursing home caring for him. It is admirable and it was her choice but it destroyed her health.
My heart goes out to all of you and I hope and pray that we find a cure for Alzheimer's ver, very soon.
Margaret
Talbott, TN
My father-in-law has Alzheimer's and being cared for by my mother-in-law. He is 85 and she is 76. It has been heart breaking to watch this disease progress taking a very happy man and turning him into a shell of the person he was. There are few people he even recognizes anymore. I thank god that I am one of those people as he is so very special to me.
Tari H.
Queen Creek, AZ
My dear mother went to her heavenly reward five years ago and I still miss her as if it was yesterday!!! She suffered many years - 12 we think - but kept her beautiful smile to the end. Mother was a wanderer and quick as lightening, and "got away" from us many times. She was the first patient in the local Alzheimer's Unit, and taught them many valuable things - such as how to climb the fence that surrounded their garden area, how to unlock the windows and climb out to go to the bowling alley next door, how to repair all the toilets in the Unit, and most especially how to make a proper bed. Seven years in the Unit, and certainly not all happy days. Having been a farm wife, all her life, she was always on the go, from early morning to bedtime, so they had to invent things to keep her busy.
I am giving back by facilitating support groups, and would urge all of you to attend your closest group, as they need you for the experience you have - you need them in case they have more experience than you! This is a cruel disease that robs us of so much, but always remember to hug and touch your patient. This is so important to them, and to us as caregivers. Even though it's difficult to watch them go through this, we can learn so much and pass this on to others. God bless each and everyone of you and yours, and keep on "keeping on" for Alzheimer's research.
Joy J.
Danville, IN
My father suffered Alzheimer's for years, or more a aptly I should say my mother suffered from my father's Alzheimer's! I watched her circle of friends dwindle till she was very isolated as a care giver. She was faithful to the end, even when it meant 2 hours by bus each way to visit dad once he was placed in care by the state. And the battle she had to get custodial guardianship back from the state! She is now suffering stroke induced dementia, so her life also effectively ended with my father's diagnosis of Alzheimer's.
Alzheimer's is the worst disease I can think of, it impacts entire families and goes on for years. There are other horrible things out there but they don't drag on as long!
Courage and humour to all who are coping, or trying to. Keeping a sense of humour is so important! It's the lifeline!
Nancy L.
TopEnd, NT Australia
My mother, Betty Clark Walton, had Alzheimer's disease. She and my dad died resulting from injuries in a car accident. Mom was already wandering, wanting to go "home," eating the whole bag of Halloween candy and all those things you hear about.
I have missed her for 10 years, though she died 6 years ago.
She had moments of lucidity, we were at the freezer getting something out for me to cook, and she looked at me with tears running down her face and hugged me hard and said " What is this thing that's happening. It scares me!" Those are painful words to even write, let alone know they came from your Mother!
God Bless all thos with this horrible disease and all those who care for them. It's a hard job either way.
Barb J.
Tacoma, WA
My father was suspected of having Alzheimer's' approximately eight years ago after moving to an adult foster care home (in the Midwest) where he had more regular medical care. Over time, he had progressive declines in memory retention, was unable to follow-through on commitments, etc.
One summer day in 1999, he ducked out of his adult foster care home while the attendant was helping another resident dress for the day. That was the last he was ever seen until his remains were found within a mile of the facility about 10 months later. (He had an ID bracelet, but took it off and left it behind before leaving the facility.)
I was fortunate not to have to be the direct caretaker for a parent/relative afflicted with Alzheimer's. I know others who have been in this position and know it is extraordinarily difficult.
So, my best wishes travel with you and all those who are supporting your efforts!
Ami's note: Please read more about the Alzheimer's Association's at www.alz.org. Click SERVICES, and then select Safe Return.
To read a short story Cay wrote about her father's death.
Cay M.
San Jose, CA
I think that this is a great organization. My grandfather passed away after a very long battle with Alzheimer's. I'm new to quilting and I didn't even imagine that there was such a group as this out there. Thank you!!!!!!!!!!!
Carla
Cranston, RI
I am an Alzheimer's nurse and have done this work for my entire nursing career. This is by far the worst disease I have come across not only for the patient, but for the family members as well. This disease strips the vitality of the patient but worse yet, it strips the family of heart and soul. After years of working in a nursing home, I now do private duty care only. I enjoy the one on one care immensely and for the Alzheimer patient, repetition is the best thing you can give them. The continuity of care is so very important for them. So I urge all families to look to private duty care if it is at all affordable. It is so much better for your loved one. BUT that is not to say that nursing homes are bad. You have to do what is best for ALL of you. Choose a nursing home well though. Look for things like how long staff has been employed...a big turn over says that something is just not "right." Look for activity programs available...in and out of the facility. Check out the PT/OT programs and if it all possible choose a home that has therapists on staff. Check for cleanliness especially when walking in the front door of a facility. If it smells clean, then that is a very good sign. Watch as you tour a home (and tour many if possible before choosing one) to see the interaction between staff and residents. And most importantly, and I do stress this....DO NOT feel guilty because you have placed your loved one in a home. As the disease progresses, it is imperative that safety be the all important issue.
The man I have been caring for for over two years, passed this week. It was sad, but I also rejoice when they leave this world because I know that their suffering is over and they are at peace. I held his hand for 10 hours talking to him and soothing him at the end until he took his last breath. One more important issue that I would like to stress...please KNOW, that all patients hear you right up til the end. They just can't let you know they hear you. So talk to them, tell them that you love them, and tell them it is okay to go. They need to hear that.
I am sad that I no longer can speak to this man and to be with this family. But I do believe that God will put me exactly where I am needed when I am needed, so for now, I will enjoy my time off and take pleasure in being with my family. If any of the things I have written, has helped any of you, then I am happy. Peace and courage to all of you who are going through this disease.
Lori S.
Webster, NY
My mother was diagnosed with Alzheimer's disease when she was only 64 years of age. She died on August 23, 2001. She not only was my mother, she was my best friend. No one should have to suffer that way. It is a degrading, horrible disease that robs people of their dignity and self respect. I took care of my mom until we had to put her in a nursing home. My mother worked for 10 years in a Mental Hospital and always feared Alzheimer's disease and being put in a nursing home. I couldn't stop either one from happening to her. It was horrible, but as a care giver I did learn alot about the disease and how to take care of my mom, without the anger and hurtfulness she could cause. I wouldn't wish this disease on anyone. I and my sister both fear getting the disease ourselves. You try not to worry about it, but it is always there in the back of your mind.
Connie Campbell
Akron, OH
My mother who is 77 has had Alzheimer's for the last 10 years.. My father, who is 82, has been taking care of her up until two weeks ago, now she is in the hospital very ill. Our hope is that she will recover enough to come back closer to home and be in a nursing home. Would you believe that you would ever wish that a parent could be in a nursing home. Not ready to lose her just yet, but know that the real her has been gone for several years. This has to be the most devastating disease! My mother was a great artist, sewing, painting, cooking, and anything else she set her mind to. I would really like to go shopping with her one more time; we had such great shopping trips...
Connie J
Trophy Club, TX
My dearest friend for the past 38 years was diagnosed with Alzheimer's 5 years ago. She is now 63. I've watched a competent, sometimes opinionated, woman become content to sit and do whatever she is directed to do. She used to create wonderful stained glass pieces. Up until a number of months ago, she would talk about the piece she was working on (started 3 years ago), but now she never mentions it.
We belong to a Red Hat Society group and still go out once a month with them. She can't remember the people in the group but is delighted to be out with us. The other women are wonderful to her and make sure that she is watched after. At least for now we are able to continue going out to lunch and looking around the stores. I hope she will be able to continue this for a long time. I miss the "old" her but dearly love the person she is.
Joan P.
Cleveland, OH
My husband developed early onset Alzheimer's Disease at about age 48. We had a six year old daughter. Not your usual Alzheimer's family! Sometimes I wonder how I got through that time but I was fortunate to find a job in my profession and move on. He passed away in 1998 after 12 years of suffering. The whole experience made me a stronger person and I have a good life. I do see that it has effected our children but they have all overcome as well and he would be proud of them. I am now retired and am enjoying more time for sewing and quilting. I am blessed every day.
Vi L.
Bison, SD
My Mom and her two sisters died of Alzheimer's disease. It is the "long goodbye." Although it's been two years since my mother's death, I still miss her. Even as the disease progressed, she had a childlike quality about her, and I could relate to that. But, on the first Mother's Day that I did not have my daughter at home, my Mother looked at me and for the first time did not know who I was. It was devastating. Each step of the journey was a loss - but also the beginning of a different kind of relationship. I was blessed to be present at her death where she reached out to the appliqued heart with my Dad's name on a photo quilt I had made when she first went into a nursing home. My Dad had died exactly 8 weeks prior - and I felt that they were now together again. It's a journey none of us wants to make, but the memories sustain us.
Mary Jo Gonsiorowski
Princeton Junction, NJ
My mother has Alzheimer's and it is a very devastating disease. I know that God has a plan for her and my family, and I have to trust in Him. I at times would like to have my Mother, MaryAnne, just hold me like she used to when I was a little child. My mother was the social butterfly in our family, an avid sewer, crocheter, knitter, and all around glue that held us all together. My relationship with my father was rocky, and without my Mom, "here" anymore it is difficult to be with my father at times. I want so much to hear her say, "Julie, come here my darling, let me hold you close to my heart, just one more time!" It breaks my heart to look in her eyes, knowing that she is just not "all there anymore". Again I know that God has a plan for our family, I just have to trust in Him, and at times I falter because I am only human.
Julie B.
Des Moines, IA
We lost my grandmother to Alzheimer's. While my relationship was rather rocky with her as I grew up, I was able to make up for some of that helping to care for her as her disease progressed. My parents were wonderful caretakers. Even after she had to be moved to a nursing home either they or myself were there every single day. As her disease took her to the point where she could no longer speak, we knew that she could still recognize us at times by the way her eyes would light up when we entered the room. She especially loved it when my children came with us. She would smile the entire time they were there. We miss her but know that we lost her years before her body actually left us, to this terrible disease.
Nancy S.
Houston, TX
I just recently loss two of my favorite Aunts to Alzheimer's. My Aunt on my mother's side died at the age of 91 and she had Alzheimer's for almost 10 years. My mother would go up to Vancouver B.C. and see her every 3 months. Until the day my mother passed away 4 years ago. Then my brother took over the responsibility of seeing her the Day she died (Aunt) they were going to go up and see her that day she passed away.
I also had a Uncle on my father's side who passed away with Alzheimer about 10 years ago. And now recently my Uncle on my father side wife just passed away last month due to it. So I wish that they would come up with a cure for it.
My father passed away in 82 with Parkinson Disease. SO I have history of both diseases on my side of the family.
I hope and pray someday they will have a cure for both diseases.
Cheryl VQ
Port Orchard, WA
I lost my Mother, my last living immediate family member, on March 2, 2006. She was 85. So it is still very recent and the sadness very close to my heart.
Via little strokes she'd lost her ability to speak so the onslaught of Alzheimer's was particularly difficult as she couldn't express what she wanted or felt. Having witnessed my Great Aunt Eva's descent into that world of confusion, I knew that Mom had thoughts inside that she could not express. My Great Aunt had once said that the words and thoughts were inside but she couldn't get them out. But for Mom, with her speech gone, even in the earlier stages of Alzheimer's, she couldn't express her wants or needs and would become combative in her frustration. She'd witnessed Auntie's descent into that world of confusion and now was there also.
I was fortunate to be with Mom those last few hours of her life. But it wasn't easy. And it wasn't gentle. But she needed to have me there and I needed to be there too. Mom was a lifelong needleworker and after retirement made quilts.
Melissa B.
Bristol, CT
My mother, age 90, has been in an Alzheimer's unit for about 5 years now. For her 90th birthday, I made her a colorwash wall hanging that included mountains, trees, shrubs, a little log cabin and, of course, all the wonderful colorwash floral fabrics. Well, mom really connected with that. A life long sewing enthusiast, she was almost enchanted. She ran her fingers along each seam (and there were TONS of seams, and she talked about it (non-intelligible) but I was able to pick up on some of the intent and respond appropriately. It was so (sew) wonderful. I'm not sure whether she connected more with the textures of the appliques and seam or the colors. But it didn't matter. I cried for days afterward, but am so glad I made the effort. Next project: an Alzheimer's quilt to submit to Ami.
Mary F. Houston, TX
Mom died on March 4, 2005, after many years of suffering with Alzheimer's Disease. She was very frightened when she couldn't remember things and began looking to me to fill in the gaps for her when needed. Mom was fortunate to have been a part of the Stanford Hospital Veterans Hospital Alzheimer Research Project. The last 3 years of her life she required full time support. Our youngest son and his family moved in with Mom until moving 300 miles away, then my husband and I moved in and I quit my job to give her full time care. Mom was also a member of the Scrappers Quilters group meeting regularly each week. Quilting was very helpful in maintaining Mom's memory for shapes and stitching, as well as providing opportunities for friendships. Mom knew she had Alzheimer Disease and was very open about it, sharing with friends and family. She was funny and loving and generous. She was also very much loved. We miss her more than we ever imagined possible.
Judy H
San Jose, CA
Thank you for offering a space for those of us who can share their experience with such a thief of a disease.
In May 1996 I lost my mother to Alzheimer's, although, like others have mentioned, she had faded away mentally many years before. My father, bless his heart, took care of her, alone, until the last two weeks. He will be 89 yrs young this June, and still reminisces of their 53 year union.
Currently I offer my assistance and shoulder to lean on for a co-worker whose father is going through a rapid failing due to Alzheimer's.
I am working on a design to put into cloth my mother's first love - her garden and plants. This will be my contribution to the Alzheimer's Quilt auction.
Ginger W
Oxnard, CA
My lovely mother was born in 1909, she worked so hard as a young married farmer's wife. When her father was diagnosed with hardening of the arteries (really Alzheimer's) in 1960 she cared for him and her mother, even though she was a widow. She slowly drifted away from her family, at age 75, leaving behind a shell of the person she once was and passed on to her reward gently on New Years Day 1992. We remember her laughter, smile, hospitality to friends and family and know she is in a better place. Being human we miss her but realize it was what she really wanted. She had one sister who showed no signs of Alzheimer's.
Martha B.
Shelbyville, IN
My 91 year old uncle has brought his wife back into his home where he makes sure that she receives the best of care. She is also 91, having been diagnosed 10 years ago with Alzheimer's. He tried twice to find care for her in a facility but decided the best care was to be found at their home with the help of others. He says that the doctors tell him that there is nothing left in her but he knows better. He notices that when their son or a grandchild walks into a room, he watches her face and sees a light come on in her expression. He knows she is still in her body and he treats her as he always has, with love and tenderness. After over 65 years of marriage, their love is still alive.
Another relative, one of my elderly mother's favorite cousins told me that she took care of her husband, with Alzheimer's, for many years. When he finally passed on, she ended up in a mental hospital for over three years. She is fine now but the stress of his care took so much out of her. I have only the highest regard for those who care for their loved one during this very difficult time in their life. I am caregiver to my 88 year old mother and am so lucky that she only has dementia occasionally. I feel I am blessed to have her this long and we still can enjoy each others company. The caregivers to those with Alzheimer's deserve great rewards for the job they do.
Susan M
Cedar Park, TX
Our Mother's body passed away in October, 2005. The woman we knew was gone about two years before that. Early in the beginning of Alzheimer's, she knew she was having memory problems. "My memory just isn't any good anymore, you know?" And she'd look at us with such a puzzled look on her face. We saw the fear when she thought someone looked in her windows at night. We saw the anger when she told us we didn't believe anything she said anymore...that we argued with her all the time. We saw the empty eyes when she didn't recall our names anymore. We remember closing her household without her knowledge after she went to the nursing home. We get tears in our eyes when we took her to the nursing home and she had no memory of all the hours we had discussed this with her.
But we also saw the slow smile when she saw photos of our grandbabies even though their names couldn't be recalled. We felt the touch of her soft hand when she just needed to hold on to us. We try to remember that she was so blessed by a long life free of much physical pain...that she was a fighter and remained independent for so many years...that we were wanted and loved...that she and Dad loved each other faithfully...that she did the best she could.
We also try and deal with the realization that the same thing could happen to us and the implications to our own kids.
Marilyn
Russiaville, IN
I lost my dad two years ago to Pick's Disease - a really horrible form of Alzheimer-type dementias, which is highly genetic in nature. I spent a year or so sorting out the what-ifs, considering that worst case, I could have as few as 5 good years left.
The effect of that is actually positive — I now live like today could be my last. I'm more thankful than before, and less likely to have regrets. (OK, I wish the house was cleaner) The time I had to spend focusing on the disease was not conducive to artistic work — in fact, I wanted to keep those thoughts separate from quilting, my beloved stash, the music I love, etc. Even today, it's difficult to separate memories of my father from memories of my father without the use of his frontal and temporal lobes.
I've sorted it out the best I can - now I need to enjoy life without thinking about it. I have one brother - we could be having to think about it soon enough. I sincerely appreciate what you're doing.
Karen S.
Dallas, TX
What a coincidence to stumble across your web site today for the Alzheimer's cause. I have just completed the finishing touches for a quilt to be auctioned at our local Alzheimer Association. annual fund raiser.
I lost my Father to this disease three years ago in August. Unfortunately life and jobs did not keep us close physically and so it was my Mother who assumed the brunt of care for him. Each time I did visit you could see him slipping further a
To receive the most up-to-date information about the Alzheimer's Art Quilt Initiative, subscribe to the AAQI Newsletter.
The Heart Never Forgets
By Beth Powers
In life you forget a lot of things
Your body gets old
Your mind fades away
But your heart never forgets
In life your body gets ill
Muscles get sore
Organs fail
Fingers cramp
But your heart never forgets
In life your mind disappears
You can’t remember birthdays or dates
You mix people names up
The simple things slip your mind
But your heart never forgets
Your heart never forgets,
The people that stole that place in your heart,
Where the home is
Or why you love them
So when you are old and gray
And your mind is going away
Remember your heart never forgets
And so I say
In life you forget a lot of things
Your body gets old
Your mind fades away
But your heart never forgets
My story is typical of a loved one. My grandma was diagnosed when I was 16 and along with my family, I watched her slip into her memories. As she was reliving her past, we all had the opportunity to meet a different side of my favorite person in the whole world. However, once the memories started to leave her completely, the world felt so empty. I can only imagine what really went on in Grandma's mind for the seven years after she lost the ability to speak. My mother called me during the worst snowstorm in five years to tell me it was time. I made her hold the cell phone up to my grandma's ear to say goodbye. She used to joke she was always waiting for me, but when she waited for me to say goodbye, the joke became a heartfelt reminder of the grandma I loved so much. Jen J.
St Paul, MN
I happened upon your site by accident as I always find things this way. I lost my dad to dementia in 1988. It was very a long and sad road that also took my mother. She died from a broken heart a year before this awful condition took him. A year before my mom died I lost my sister to cancer. It was quite a journey, losing my whole family in three years.
My dad was the most happy and lively man, always a smile and a joke on his lips. Everyone loved him. I saw this wonderful man lose all of his memories and turn into someone I didn't know. He was a people person all through his life. He spent the last three years in a nursing home and never asked to come home. I guess that was a blessing of sorts. When he was dying, they called me immediately. It was very important to me that he not die alone. He died in my arms; he was not alone.
Judy Kessler
Chandler, AZ
Ami,
We buried my mother-in-law, Frances last week. She led me to AAQI through her illness and I am forever grateful. My first art quilt was #287. I had never heard the term "art quilt" before then and was so grateful that mine was accepted. From that first attempt I felt that this was a gift to Frances and to me. Since then I have watched your efforts and the growth they have had and I am so proud to be a part of this effort. I will keep sending quilts as long as you need them. I see that they are getting more and more beautiful. For Frances, I will attempt to make something beautiful enough.
Judy Leathers
My mother-in-law was diagnosed with Alzheimer's about two years ago. At that time she was 80 years old and driving her own car. She was so proud of herself, as we were of her. She was very independent then she began to forget things. That wasn't too unusual at her age, until she started getting lost in her own community, forgetting to turn off her stove, putting things away and not being able to find them. It started there, but it's now to the point where she is in a nursing home, and has to be told to chew her food, and to swallow — when we can get her to eat at all.
This Alzheimer's has taken her away from her family and every one that loves her. It has made an old woman out of a vibrant, full of energy, full of life, wonderful woman. And there is nothing we can do, only watch this terrible disease. It's a thief of what we all hold dear, our memories, our mind. It takes everything and leaves a mindless body of a person we don't know anymore.
Mabel B.
I am a registered nurse in BC Canada. I work primarily with clients (who have some form of dementia) and their families that still live in the community. My work allows me to enter into a special relationship with these families in a most difficult time in their lives. It is a privilege to help them in their decision making along their journey.
As a quilter and care provider I was most pleased to find this initiative. My quilting friends and I will be soon adding to your cache. Thank you for this opportunity to be more involved at a different level.
Cathy B.
My husband was diagnosed at the age of 62, at the present time he is 71. He has resided in a nursing home for the past two years, taking him to the nursing home was a most trying experience. Our only hope for this placement was being close to our home, this made visiting very easy and we go daily. I have a son and daughter, along with their families and they are very helpful in his care and the decision making. I just happened to find your web site this date and am looking forward to visiting the Alzheimer’s Forgetting Piece by Piece exhibit when it comes to Morgantown. My quilting has been my salvation, I began quilting two years ago when we placed my husband in the nursing home. My first hand quilted quilt I donated to the nursing home and it was exhibited at the local county fair, we sold tickets and the money was donated to the Alzheimer’s Association, we raised $650.00. I have already completed my second quilt, which will also be donated to the nursing home for the same purpose this year. I plan to make this a yearly project and hopefully raise lots of money for research.
Sandy B. Fort
Ashby, WV
My 85 year old mother is living with my husband and me. She moved in a little over 13 months ago. We knew at the time that mom was no longer able to live by herself; she needed help with her meds, meals & needed more social interaction. We had no idea how fast mom’s memory and abilities would decline. It is a strain. Mom does little for herself; she complains about her health everyday. It is very difficult to get her to go out of the house any more as she is afraid she will make a verbal faux pas or God forbid, have gas. My husband is retired & I still work full-time so her care falls mostly on his shoulders. He is a wonderful man needless to say. I recently was granted intermittent leave through FLMA. I have four siblings –one lives in the same city and is able to provide care so we can occasionally have a night out. The others visit as much as possible.
I am a quilter and found your website while looking at my favorite quilt shop website.
Marlene Hanft
Waterloo, IA
I recently finished my Nurses Aid in April of 2007. In August of 2008 I secured a full time permanent position at an assisted living centre. I have had no exposure to the elderly until my posting… My point is all of your writers are truly blessed to have met the wonderful people they speak of. I am learning about this Alzheimer's on a daily basis and I too am happy for every day I have with my tenants.
Debbie from Canada
I lost my grandmother, Lois, to Alzheimer's in December 2003. It's such a cruel, vicious disease, reducing a woman of dignity to a mere shell of someone I love. I have three daughters who my grandmother loved very much and I remember taking a day off work to go visit her (she lived two hours away). Normal visits included my husband and children, but this day I decided to go alone. Poor thing.... it was just too upsetting for her to see me out of context. She worried and fretted the entire time I was there because "that man and those little girls" weren't with me. By that time she had lost my name and simply called me "Indiana". And I clearly belonged with "that man and those little girls". I was careful to never go visit her alone again. At least not until much later when she no longer recognized anyone or anything.
My prayers are with every family that has been touched by this dreadful disease.
Lori T.
Greenfield, IN
In our family, it has been my Dad who has Alzheimer's disease. We lived and watched him go for a decade now-he is worn very thin in every sense of the word.
Thank you Ami for the energy and power you have shown in beginning this Quilt Initiative. Our common thread is so strengthened by each other. My Dad has always supported my sewing — when I was seven years old, I received a "toy" sewing machine that didn't really sew. (It did a chain stitch that, of course, ripped out when I pulled on it.) Daddy was so mad that the machine didn't work right that he went out the day after Christmas and found an old treadle machine that still worked and bought it for me. I used it for years and years. Jean W.
Raleigh, NC
My husband Earl and I had a 12-year Journey with Alzheimer's that started in 1993 and ended March 22, 2005. We saw some signs that we knew he was showing early signs of Alzheimer's and went to our family doctor. Our doctor had been through Alzheimer's with his mother just a few years before this and knew we were right.
We chose not to tell our five children, or his family or mine, until we had to. Earl worked until December 1996 without anyone knowing he had Alzheimer's. No one on either side of our family had any idea either.
Earl was always a quiet person and everyone just thought it was usual for him not to talk very much.
We did everything we could for him. He saw four different neurologists as well as one other internist and all agreed it was Alzheimer's disease. He was on one of the Alzheimer's medications all the way through from 1993.
Earl was able to keep raising a garden and taking care of a few calves we raised each year until 2002. He started having daily migraine headaches in 2002 and the neurologist did all test possible and said there was no connection with migraine headaches and Alzheimer's.
I found AlzaheimersCargivers on the computer and read every book I could find on Alzheimer's. I was prepared for what lay ahead of us and was able to help him all I could.
Earl was able to talk to us all the way to the day he died. Earl was in a hospital bed from June 2004 because he was having problems getting out of bed. I have a spinal fusion and wear a back brace so it was hard to lift him myself.
Earl started to shuffle when he walked in 2002 — and it just kept getting worse until he could not walk without help by January of 2004. His feet and leg got to the point where he had to be in a wheelchair. He could stand and move enough with me holding him to get from the bed to the bedside commode or the wheelchair. He could stand and move enough to move from the wheelchair to the recliner.
January of 2005 he really started going down fast. The middle of January he had to have a catheter because he could not make his kidneys act on their own any longer. He had to have an enema to have a bowel movement and would know when he needed to have a bowel movement but could not do it without the Fleet enemas.
He was totally bedridden from the middle of January until his death in March. He had lost the control to sit up and begged us to let him get up. We had to put pillows behind him and have a person on each side of him while he sat on the side of the bed and we had to keep him from sliding off the bed because he could no longer control his body to make it sit up.
He would hold a small piece of bread or cracker and feed himself that much while I fed him the remainder of his meal. He would feed himself slices of apples and chew them up. He also liked to feed himself small strips of cheese.
He and I had always checked our stock each day when the newspaper came. He would still ask me every day when I brought the newspaper in the bedroom what our stocks were doing. In those last months he would tell me to keep a check on the oil and other fluids in my car. He told me to take it to the service station with full service at least once a month and have them check everything for me. He would tell me to check our propane gas and keep a close check on it so I would not run out when it was real cold.
He had asked me over and over if I was keeping a close check on our savings, stock and to be sure I did not get in debt.
He knew our five children and 9 grand children that came in and out all the time and his brother and three sisters and their spouses that lived next door to each other and us.
Our faith was such a comfort to us and he enjoyed the visits from our church members and pastor. He always wanted them to have prayer before they left.
We had always held each other and said our prayers ever night and he asked me when we knew he had Alzheimer's to pray each night that God would call him to heaven before he was a vegetable. God did answer our prayers March 22, 2005 with all our family here with him as he kissed me and smiled when I told him he had done everything he was supposed to here and Jesus was waiting with open arms. He looked at our youngest son who was holding his other hand and at our two granddaughters that were at the foot of the bed. He had a beautiful smile on his face as he left us here and joined Jesus in heaven.
I am so thankful we were able to keep here at home with the help of hospice from April 2004 until March 22, 2005. I still work daily with the Alzheimer's Caregiving group on the computer. I am using all I learned to help the ones that are on the journey now.
Ann F.
Talladega, AL
My Dad had Alzheimer's disease. Towards the end, the family had a dinner. Several members came into town and met at my brother's house. At one point Dad leaned over to my sister and said, "I know you're my daughter, but I don't know which one." She took his hand. Then he added," I know they are all family, but I don't know who anyone is." She leaned over and said "That's ok. All you have to remember is that they all love you." Dad relaxed, and smiled.
I am amazed at my sister's strength, at my brother's kindness for taking Dad into his home. We all loved Dad dearly and miss him.
Patty A.
Thank you Ami for this site and for your dedication. My father was diagnosed with Alzheimer's in 2003 at the age of 63. His mother passed several years earlier with Alzheimer's, as did his father with Dementia. Yes, what a terrible disease and I, like so many others, often wonder what is in my future. I lost my father this past August 16, 2007 at 1:45 am. I, along with my two step brothers and step mother watched him take his last breath. We were called in to the nursing home on Sunday and spent every minute with him until those final moments the following Thursday. He is with his Maker now. From that very moment, I ceased my whining concerning my future and decided to live life to the fullest. No sense in worrying; what God has planned for me, or for all of us for that matter, is his plan. We can't change that plan. However, we can make a difference, just as you are doing here on this site. I will be making some donations in 2008.
Thank you so much.
Sherry C.
Waxhaw, NC
My dear, sweet big sister was diagnosed with Alzheimer's just 4 years ago at the age of 55. She taught me to sew and later shared her love of quilting with me. We looked forward to the days when we could retire and sew all the stuff we so lovingly saved in our stash! We planned trips to Paducah, Houston, and even Holland where our heritage was born. She made beautiful quilts, far surpassing my talents. As she had taught me, I soon was teaching her, helping her and finally she could sew no more. Today she lies in a nursing home; she can no longer walk, feed herself, or talk very much. Hospice has come in and try to keep her comfortable and at peace. As children we used to walk the beach searching for "beach glass", a practice we never gave up. Now I walk alone and bring her the treasures to decorate her room. We always inspected each piece to be sure it was 'done'-no sharp edges or shinny sides. It's said it takes 10 years to make a piece of glass into "beach glass." I make lots of wishes- first it was for a cure, then a better treatment, now I wish for peace....I think its working because she doesn't scream quite so much and her forehead furrows and fearful eyes are fading. This weekend I will again make the trip to sit with my sister, walk the beach, and make wishes of peace. She is still here, but I miss her so much!
Sandee
Atlanta, GA
My mother is now in the final stages of Alzheimer's - and I understand why some refer to it as the "long goodbye". I've being saying goodbye in stages for a few years now since she was diagnosed, watching the woman who gave me life slowly die - and not in the way she'd ever wanted to. I made a memory quilt for her that had pictures of her children and grandchildren incorporated with lighthouses and the ocean - she smiled and said "you know me well." I so hope that a cure can be found — so that people who are diagnosed with this terrible disease do not have to face such an undignified future, and their loved ones do not have to face the long goodbye. Thanks for your Initiative . . . I just know it's helping to make a difference.
Susan P.
Emmett, Idaho
I was thrilled to find this site...and will be starting a new quilt soon to donate to the nursing home who so lovingly took care of my grandmother for the last 1½ years of her life. I just lost her on August 10,2007 to this horrible disease. She never knew that she had Alzheimer's....she always said that she hoped that she never got that, and that would be such a horrible way to die. She never really knew much about the disease. She would have been 83 on the 28th of August, and I miss her so much.
I used to spend every summer with her until late in my teen years. From my grandmother I got my love of fishing, crochet and being outdoors in general...along with a deep respect for my elders and family. Our family will be burying her on Monday August 13, 2007 and deeply miss her already but also know that she has gone on to a better place. She won't be confused any longer and will now be able to see her mother whom she missed dearly. She often asked my mother the date that she married her first husband who was killed in WWIII, Mom always said that she wasn't sure but thought that it was 1940, we always got a chuckle out of that because Mom wasn't born yet.
We are hoping and praying for a cure soon...please have all your friends and families support all Alzheimer's association benefits to their degree of ability. You never know if or when you or your family will be affected. Thank you so much for the opportunity to let me put into words some of my grief.
Sincerely,
R. W., Tipton IA
My husband has Alzheimer's disease. I am his caregiver. He goes to a day care center every Monday. That is when our quilt study group meets. We go out for lunch together, and I can talk with my friends, because at home there is no conversation. It is so sad. I did not expect our retirement to turn out like this. I don't know how much longer I can keep this up. I am 78 and he is 86 years old.
Erna
Beloit, WI
Thank you. I read all the letters and cried and cried. My husband has Alzheimer's and is now in a nursing home. I go to see him six days a week. I keep trying to convince myself that I have done the right thing, but every time I leave him and get back home I just want to go and get him out of there. He is such a lovely man and I am dreading what lies ahead. I am putting on a brave face but I am dying inside. I have to show that I am coping as I can't bear to worry my daughter and son more than I have too. This horrible, horrible disease has taken its toll. He still smiles at me with his beautiful blue eyes. Why Him?
June S.
Essex, England
I loved my grandmother. She was incredibly intelligent, a great knitter and had a wonderful laugh. She could also be very bossy, but that was Grandma Evy. In the last stages of her illness, she lost all recognition of her loved ones and was terribly confused. One time toward the end of her life, my husband and I were in Milwaukee visiting her. We were taking her around her nursing home in a wheel chair and talking to her. She kept asking me why I called her, “Grandma.” I said, “It’s because you’re my grandmother. I’m Ellen.” She just looked at me with a blank stare. I’m guessing she was trying to figure out who I was. My husband took a lovely photograph of us which I sent to her. She’d look at it and said to my aunt, “who’s the pretty girl in the picture?” It was me. Grandma asked my aunt to cut out the “old lady” but leave the pretty girl. I miss my Grandma Evy and I will always treasure the wonderful relationship we had and the things she taught me.
Ellen G.
San Pedro, CA
When my mother-in-law was admitted to a rest home and we were trying to make sense of Alzheimer's and the effect on her, one thing said to us sticks in my mind. A young therapist said to us, "Do you know that panicky feeling when you can't find your car at a parking lot? Well that is how they feel every day when they wake up." Somehow she had given us a way to actually feel what they are feeling. It is so frightening and we have never forgotten it. Every time I see her I really believe that I understand anything she does because I understand her fear so deeply.
Judy Leathers
My husband has Alzheimer's and I think it is the loneliness that I feel mostly. We have been married 59 years and you have no one to share your memories with. I do a lot of quilting to keep busy besides taking care of my husband. He is 78 yrs old and I am 75 years old. We used to take our travel trailer on trips and that was our desire when we retired, but God had different plans for us. I used to play the piano for church and now we can't go to church as my husband can't sit that long so I no longer play. I pray if there is not a cure in my lifetime that it will come in the next generation.
Nila D.
Belton, TX
My grandfather had Alzheimer's and we lost him to this terrible, cruel disease in May of 1997.
Grandpa always loved to eat, he was over 6 foot tall and large framed. Alzheimer's took the ability to eat away from him; he weighed 90 lbs when he died. My father was an only child and I one of six grandchildren who was raised next door to my grandparents. Grandpa had no clue who any of us was for the last couple years of his life. He just knew we were the ones that feed him when he would eat, showered him, shaved him, dressed him, read to him, watched television with him and most importantly loved him.
The lose of a loved one always hurts but to watch that loved one dwindle down to nothing, be unknowing of those around him/her and their surroundings is cruel and still hurts this 10 years later.
Because, I could be in line to get this disease I am doing a memory quilt for myself of my life. I want my children to remember me for who I was not what I became. And if I'm lucky and don't get Alzheimer's or a cure is found the quilt will still be a reminder to them who I was.
Kris B.
Lincoln, NE
My sweet and gentle father was diagnosed with Alzheimer's on February 3, 2003. The day that Dad was diagnosed he handled it like a trouper, he was very brave about it. I told Dad that me and my husband would be with him every step of the way, and we were. A month after Dad's diagnosis I reached out to the Alzheimer's Association. Dad and I attended support groups together with other caregivers and Alzheimer's patients. We all learned a lot from each other and supported each other. These wonderful, caring, loving people are my extended family.
As the disease progressed I was filled with sadness, grief, anger and fear of the unknown. What else would this disease do to Dad? We switched roles, Dad became the child and I became the parent. He was so very sweet and innocent, relying on me for everything and trusting me completely. I am honored and blessed that he put that kind of trust in me. This was the most difficult and most loving thing I've ever done in my life.
One valuable lesson I learned about Alzheimer's disease is to "Enter their World." It really doesn't matter if your loved one with Alzheimer's says the carpet is green when in fact it's red. Just go with the flow. The only time I ever intercepted Dad's delusions or hallucinations was when he was afraid or sad because of them, which fortunately was infrequent. He usually enjoyed the "things that he saw" that others didn't see.
As I watched Alzheimer's take my Dad away slowly but surely it was heart-wrenching. However, I have learned the value of keeping a sense of humor. We shared a lot of love and laughter even in the face of Alzheimer's disease.
Dad eventually moved to a "dementia specific facility" where I went to see him almost daily. One of the last good days that Dad & I spent together we went for a walk, enjoying the birds, flowers and trees. Dad was so childlike and innocent. We came across a little Wren. Dad was always an animal and nature lover, so we ever so carefully knelt down an arms length from the little bird and admired him. Dad loved this. He also shared a story about a "secret room" that he had discovered and was happy and quite smitten with himself. He said that he could look through a crack in the wall and see the room. I was wondering what he could mean, but didn't want to push it and upset him. I told him this was very cool and we laughed together about his discovery. The next day we walked together again and came to a wooden fence. Dad went over to the fence and peeked through it. With a big smile on his face he showed me "the room" that he had discovered. I peaked through the fence then smiled and laughed about how wonderful this was and told him it was our secret.
On February 22, 2007 Dad went home to be with the angels. Our journey together is over. I miss him every day.
The Alzheimer's Association was with us from the first phone call until Dad's final days on earth.
My involvement with the Alzheimer's Association won't be over until a cure for Alzheimer's is found. I continue attending the support groups that Dad & I went to together, now helping others who are living with Alzheimer's. I'm a member of the Alzheimer's Association Memory Walk Committee and will continue to have a Memory Walk team every year in loving memory of Dad.
Lea N.
Port St. Lucie, FL
Six years ago June, my mother was told she had Alzheimer's. I watched a soft spoken, non-cursing and never touched a drop of alcohol in her life person turn into a very grouchy and sometimes mean person. My mother had quilted all her life and made the quilts from clothes we wore and out grew of. It was always fun to recognize the material as a piece of what we wore. I am the youngest of eight children born to my mother (six girls and two boys). I am the only daughter that kept the love of quilting alive. I have three daughters and my youngest (age 12) likes to sew and I hope she will keep her interest and carry on after me. My mother lived three years after she was diagnosed and has been gone three years now. About a year before she passed she was working on a quilt, but didn’t finish it. When it became too difficult she gave the unfinished quilt to me and I knew I would finish it for her. I held onto it with every intension of finishing it but put it away. After mom died It took me all of three years to pick it up without crying, but the month of March seemed appropriate since she loved everything about spring! The pattern is “Drunkards Path”. I smile at her humor when I look back and remember her telling me that she sometimes felt like she was walking like a drunk during the Alzheimer's time. How ironic that she would choose to do that pattern! I miss her smile and remember her every time the birds sing and the flowers bloom.
Tammy C
Springfield, IL
You're all correct. This is a devastating disease. My younger brother was diagnosed when he was 58 yrs of age. Doctors told him his was from his exposure to Agent Orange in Vietnam. He is in a care center in Libby, Montana. His wife is very attentive. He doesn't seem to remember how he was an excellent guitar player or that he knew EVERYTHING about Naval history. We so miss the caring sensitive person he was.
Louise Winchel
Selah, WA
My Dad was diagnosed with AD about 6 years ago. At first, it was little things that he either forgot or misplaced. My niece got married in Texas in 2003, and Dad wanted to go to the wedding. But he wouldn't fly, he didn't know why he didn't want to fly, but he would only go if we drove. At the time he was 78 and he could be very belligerent with Mom, so I decided that my youngest son and I would go with them. It was a long hard trip going both ways, but I thank God everyday for letting us enjoy this "last" trip with both Dad and Mom. Dad really had the time of his life with my brother-in-law and my son. Words can't describe how much this meant to all of us.
A little more than a year later, we had to put Dad into a nursing home, since Mom just couldn't handle his mood swings and violence. (Dad was never like this before. He was the kindest, gentlest man ever!) He gave over 50 years of his life to the local Volunteer Fire Department and Emergency Squad. This was the hardest decision we ever had to make and it seemed like there was no help in this area for us to reach out to. So, I'm sure we made mistakes, but we did the best we could for Dad, not for us. Mom was beside herself, she just didn't know what to do, and after loosing more than 30 pounds, we had no choice. After putting Dad in the home, it was like we had lost him totally. One of us visited him almost daily, and this disease is so painful for the family, because you never know if you're going to find Dad as he almost was, or you're just going to find his sad, vacant eyes; most of the time, we left in tears.
We lost Dad on Mother's Day 2006, just 15 minutes after my Mom and sister visited with him, he was gone. It was like he waited for Mom to say goodbye.
This disease makes you mourn for your loved one not once, but twice. Once when you have to put them in a more secure place and then the final time when they go to meet their maker. At least now Dad, you have your mind back and you're at peace and happy.
Hopefully, I can get a quilt done for the Nursing Home to raffle off to benefit their "Memory Garden", it's the least I can do, so other families can be spared the pain of the ROTTEN disease.
Thank You Ami, for doing all you do to help!
Cindy N.
Westfield, NY
My husband Harold, has Alzheimer's disease, I can't say he suffers from it, he doesn't mind losing memories, abilities, and skills, he's sweet, lovable, thankful and glad to be able to stay in his own home with me. He is still able to take care of himself, enjoys my cooking, thinks I'm nice looking, and likes to hug, but for me this isn't enough. I miss the man he was, able to take care of things, liking to garden and do household chores, and make decisions and answer my questions. Several years ago he started saying "I used to know that" and "I used to like doing that, but not now", and I knew something was wrong when he quit what would have been a simple job of home plumbing and said "I can't do this any more". We can't live in the land of "If Only" and try to live day by day taking care of things, but I miss things as they were.
Constance R.
Galion, OHIO
I lost my Dad in Sept. of 2004 of Alzheimer's disease, this is a mind robbing disease, he had it along time before we knew what it was. He was in a nursing home for the last 5 years of his life. I visited him almost everyday for the 5 years, and the week that we were losing him I was there 24/7. It was one of the worst days of my life to see him slip away, but knowing he was going to Heaven and he would not have to know who he was, everyone would know him, for the strong man that he was before this disease.
In his memory every year for the Alzheimer's Association Memory Walk, I make and raffle off a queen size quilt. Tto date we have made over $2000.00, TO HELP FIND A CURE. This year's quilt is being machine quilted as we speak.
Diane C.
Clayton, NY
I lost my mother to Alzheimer's sometime before she died in 2003. She was kept going by my father, but after his death she went downhill rapidly. The most painful part for me is that they did not live close to us and I was not able to have much that much contact with her. She could not use the phone or receive e-mail — even letters were not well received. She was in a good place — with people who cared, but the family was spread all over. The emotional and physical load, and it was a load, fell on my brother. It was not easy for him.
We did have some good times - some visits, my daughter's wedding which she was able to attend. But it was seeing her lose her creative spark that hurt the most. She painted, quilted, did weavings, knitted - and everything she did was beautifully done. She just forgot over the course of several years that she did all these wonderful things. I aspire to pass some of that love of creating along to my grandchildren - Thank you for this opportunity - I think I will try a quilt piece in her memory. Sharon S.
South Pasadena, CA
My husband was diagnosed in 2003. He was first put on Aricept and later Namenda. I saw a lot of improvement when they added Namenda. I saw very little with the Aricept. I had suspected Alzheimer's in 1998. He doesn't seem to believe it because he has no idea how much he has lost. His occupation was Master Mechanic at Phillips Petroleum. He also became the big boss over the Phillips fleet of vehicles. Now he can't even change the oil in our car. My biggest problem besides the usual is not knowing what to expect next. I would love to have an idea of how long the meds will help him. He can still drive and find his way around. Still dresses himself and showers and shaves. But he has a very hard time with the Tv's remote control. This makes no sense to me. He still knows everyone he sees on a regular basis but not the ones he hasn't seen for six months or longer. Angela C.
Haskell, Oklahoma
My mom has AD. This week she got up to go to the bathroom in the night. She got confused and my dad found her sitting on the floor asking for him. She said she was in a hotel and no one would talk to her until her dad ( died 1965) came and took her home. She was the caregiver for my grandmother who also had AD. She refused to put Grandma in a home when she got to the angry, mean stage. she would bite and spit. Grandma was the kindest and most gentle woman but the disease took over and did this to her. Now Mom is starting to go the way Grandma did. This disease has to be stopped. I will do what I can to make it so.
Good luck to everyone who is threatened with this disease.
Joan N, Erskine, MN
My name is Terri. I found your Alzheimer's Art Quilt Initiative through a link posted on a long-arm quilting email list. I was so happy to see that quilters were joining together to help raise research money for a cure.
My grandmother taught me how to sew and embroider when I was very young. We made Barbie clothes, baby doll clothes, and whenever I went to visit, she had something for me to work on. I have loved needlework and sewing ever since. I am now a quilter with a long-arm business and I remember how thrilled she was when she found out I had chosen quilting as a career. I don’t remember her making any quilts but I know she loved all kinds of arts and crafts, including embroidery, tatting and cross-stitch.
She was diagnosed in 2006 with mixed Alzheimer’s, after many incidents and episodes that were uncharacteristic of her nature and put her in harm’s way. She had previously been tested by her doctor in early 2006 and had passed with flying colors. By late spring, she was tested again and even the doctor was shocked at how fast she had succumbed to AD. By August 2006, she was placed in a nursing home because she lived alone and could no longer take care of herself.
As vice-president of my quilting guild, I hope to encourage our members to join me in creating a collection of “priority” quilts to auction on your website. In March 2007, I will be doing a presentation at our monthly meeting and issuing the challenge to them. I am confident you will be hearing from us soon. Terri P.
Oconto Falls, WI
My mother is in the mid stage of Alzheimer's Disease. She is currently in a nursing home where she is kept active and healthy. She is happy and seems to enjoy where she is and what she can do. But I have learned that this disease is harder on the family and friends of the person afflicted with this horrible illness. She does not know what she does not know. I cry because Alzheimer's has taken my mother from me, and she doesn't even know it. She looks and sounds like my mother, she has my mothers smile, but her eyes look sometimes scared, sometimes confused, sometimes empty, and sometimes full of excitement for a moment, as she sees me. For a moment I am her daughter, she is my Mom, and then the cloud comes back over her eyes. I celebrate those very small moments. She was, she is, and she always will be a very special lady......my Mom.
Judy S
Newark, Ohio
My name is Diana and I work with disabled Americans most whom have some form of dementia. We have a lot of Alzheimer's clients where I work (an adult day care) It really hurts me to see families in so much pain over how to take care of their loved one and not be able to get the help they need in or out of the nursing homes.
We work with families so closely that they have become a part of our family. Families work hard to meet the needs of their loved one that cannot do the things they once did, let alone remember their names of the ones that are caring for them.
We have such a loving and family like atmosphere in our facility. and everyone goes beyond their duties to make things easier for the ones we care for and their caring facilities. We provide support groups and our doors are always open for anyone. At times there are people who need us upon an emergency. So many of the family members become ill their selves and need help with getting the care for their love one that has Alzheimer's.
I hope their is a cure for this disease that at times is not properly diagnoses or diagnosed at all. Hope the quilts are doing well and I would love to see them in Ohio Thank you for such a caring and good job.
Diana F.
Mount Perry, OH
My sister is living with AD and trying hard to just meet each day as it comes. She tells me of she abilities she has lost but then says "I won't give up". I see the struggle via the phone because we live many miles away from each other. She craves to do the hand work she once could like knitting and crocheting, but can't. She no longer can dress herself, but is still able to read and talk with everyone. She is still at home in her husbands care and dealing the best she can on a day to day basis.
She is quite a brave lady and I admire her.
Eve,
Colorado
I found you site through an old high school friend of my wife's with whom we have recently been reunited. I am the sole caregiver for my beautiful wife of forty years and sweetheart since junior high school. In 2002 I began to realize that there was something seriously wrong with her memory. Then, that fall, she told me she was having problems with her math. She could not even add 7+5! My daughter-in-law, a severe and profound special education teacher confirmed my fears at Christmas. For my beautiful wife's 54th birthday on March 1, 2003, she received a diagnosis of Early On-set Alzheimer's. She has been my life since we met when she was fifteen and I was sixteen. It was love at first sight and has only grown stronger over the years. After our 40th anniversary this past August, I finally started the grieving process and as a part of that grieving I started writing what is becoming a book about our life. The following is the end. You are welcome to use any or all of it in any way you see fit, if it will contribute to the understanding of the horrible effects of this terrible disease on the loved ones and caregivers. Sharing your pain,
Eric D. Rhodus
Denham Springs, La.
My sweet, sweet Mother, Jonnie Marie, has Alzheimer's disease and has been in a nursing home for 2 years. This is indeed the hardest thing I have ever done, watching her deteriorate, and dealing with all the legal, medical, financial issues that go with it. My Mother's mother also had AD and died at a young age. They didn't know what it was then and they called it Hardening of the Arteries. She was placed in a Mental Hospital, endured shock therapy, until she died. My Mother had always feared the same thing happening to her.
Many years ago, she told me if she ever got this disease, to please place her in a good facility, come check on her regularly to make sure she is ok, then continue my life WITHOUT GUILT. (yeah, right) It really does help, though, when I think about her saying this to me so many times through the years. I have already started talking to MY daughter about this too. I want her to be ok if this happens to me, and she has to put me in a care facility.
I miss my mother sooo much. She is still here, but she isn't here.....know what I mean? I miss just talking, showing her new things I buy for my house, scheming our little plans. This truely IS a LONG Goodbye. My only comfort is to know that when we get to heaven, Jesus will have given her a new brain, and she will be ok. Then we can sit on a cloud and chat a while. :o)
Kay A.
Tyler, TX
Three generations in my family have been taken by this terrible disease. I remember my mom's lucid moments, when she expressed her horror that she was 'losing her mind'. I pray every day for discovery of a cure, so no family will have to experience the powerless feelings this disease brings. I will try my best to help whenever I can to support this important research.
Melissa Sonnen
Albuquerque, NM
You are all correct. It is a devastating disease. My younger brother was diagnosed when he was 58 yrs old---two years ago. Doctors told him his was probably from agent orange exposure in Vietnam. He is already in a care center in Libby, Montana. His wife is very attentive. She said its like a mother/child relationship now. He doesn't seem to remember that he was an excellent guitar player or that he knew EVERYTHING about naval history. I miss his intellect and love.
Louise Winchel
Selah, WA
My Dad is currently living with Alzheimer's. Dad was diagnosed 3 years ago, he is now 53. We have a rare genetic form of the disease. His brother is in his late 50's and is in stage 5. Ten of my grandmother's siblings, including herself, died with AD.
I say he is living with it because he will not give up hope that there will some day be a cure. He advocates for himself and others with AD by speaking to others about his experiences with the disease, about his family history, and about current research.
This disease should not be a death sentence. There should be no long goodbye. Support the calls for research funding.
Rachel J.
San Luis Obispo county, CA
I was given the gift of running an Alzheimer's care unit for several years in California. It was the toughest, saddest and most rewarding experience I've ever had. The tough part was that I fell in love with each person that came into our care. The saddest part was watching the decline and the sadness and hurt it inflicted on the families of the residents. We made it a point to never forget who these precious people were before the Alzheimer's. We included activities that related to them as much as possible. We "normalized" their life as much as we could by stepping into their time be it the 1940's or 50's.
You would never know who had been a bowling champion, fishing champion, dancer, pharmacist, quilter, etc... unless you were fortunate enough to bring these things out in them. Families sometimes are so focused on their care, they forget to share these parts of their loved one's lives with the caregivers. We found these talents and skills come out by introducing "bowling in the hallway", a BBQ with fishing, music concerts etc... I swear when we had these events, you wouldn't know the folks had Alzheimer's. They slipped into their role of young adult/parent and gabbed with the others like it was 1940 all over again.
Unfortunately, good dementia care homes like that one cost over $4,500 a month minimum. Insurance doesn't pay unless you were lucky enough to take out an "assisted-living" policy years ago. Medicare only pays if you need skilled nursing. I encourage everyone at age 50 to explore investing in an assisted living policy to offset costs should they ever need help with activities of daily living. These policies cover skilled nursing care, home care and hospice. The policy I have is an investment. If I never need to use it, they will refund the money to me or my family members. I don't want my children to be burdened with huge financial worries on top of worries about my health and safety if I need help when I get older. That was one of the greatest lessons I learned from running an assisted living facility.
Alzheimer's is one of the most hateful and prevalent diseases out there and yet the government doesn't help with assisted living for these folks. As we baby-boomers age, there will be many more folks with Alzheimer's disease. I pray daily for a cure for this thief of people's golden years. I truly believe we will find a cure. I pray it's soon! My heart and prayers to those of you who have been diagnosed with it or have a loved one in the family with this disease.
My biggest kudos for Ami's efforts to raise awareness and money to fight this disease. I will make a little quilt soon, I promise!
Charlene M Houston, TX
I was an RN and a Cert nurses Aide in Long term Care for over 20 years and saw Alzheimer's in all stages. I know the heart ache it caused the families. But I also truly LOVED taking care of those with the disease. I am now disabled and only 45 and have taught myself to quilt and can think of no better way to honor or help those who have been robbed of their precious memories then by doing something like this. BRAVO AMI!!! I would love to help!!!
Juanita Millhouse
Ottumwa, IA
My beautiful mother passed away in Dec. 1999 of complications from Alzheimer's. It is still painful for me to write about this horrible disease and how it affected my mother. She was beautiful in so many ways, inside and out. So was my father, unfortunately he was taken away from us the day after his 52nd birthday. His birthday was Christmas Day. Dad was only a few miles from home and was killed in an auto accident. I am so fortunate to have had both of them as parents. They were wonderful. My brother and I miss them everyday.
Let's hope there will be a cure for Alzheimer's soon.
Thank you for this opportunity to write to you.
Sincerely,
HJ
My grandfather was one of the most important people in my life. I lost him last year after battling Alzheimer's for 15 years. I would see him everyday. We would go for walks, watch TV, or listen to the radio. We would also look at old family photos, and talk about old times. As time went on I saw the pictures becoming strange faces to him, the walks becoming more difficult to take, and the conversations becoming less and less. To me not hearing the sound of my grandfather's voice was the hardest for me to cope with. No matter how I was feeling the sound of his voice always made me feel safe. So many times I want to pick up the phone and call him, but I know that is not possible. I miss you so much Pop. I know someday a cure will be found. I pray for it all the time. Stacy T
Enfield, CT
Ami, I am so grateful to you for this chance to help end a devastating disease.
My mother-in-law is an Alzheimer's patient. I just want to give credit to my husband and all the sons who are caregivers. He is the only child and has had to become well-versed in so many new areas due to this. He has learned about Depends®, podiatry, facial hair removal, make-up, bowel movements, manicures, underwear (personal shopping),dental care, hair care, clothes sizes, coordinating closets, cleaning toilets, decorating a small room; as well as plowing through insurance rules and Medicare rules and all the never-ending red tape that he has to battle just to take care of his mother. Just to see her smile is his reward. I just cringe when I hear "Too bad she didn't have daughters". I do what I can, as her daughter-in law, but I am completely in awe of her son and the things he does for his mother. No daughter could try harder to care for a mother.
So, I salute all the sons who are taking care of parents who will never be able to say, "Thank you" and who would never have dreamed what talents these guys had hidden !
Judy Leathers
Pelham, AL
My father in law has Alzheimer's. He couldn't understand why he couldn't drive ( keep his drivers license) when he was getting lost and getting home at 3:00 AM in the morning. We had to sell his home 2 years ago to pay for his care, of which he has no idea. It is so hard to see someone you love, loose their memory.
Martha W.
Roanoke, Va
My heart goes out to every person dealing with or having lost a loved one to the ravages of Alzheimer's. I am fortunate enough to be a volunteer in an Alzheimer's Hospitality Room. We offer the opportunity for a caregiver to leave their loved one in a caring and stimulating environment for 4 hours a week, 3 days a week. This environmental change is stimulating to the Alzheimer's patient. They make new friends and laugh and sing. We do mild exercises that help maintain muscle tone, alertness, and communication. The Best Friend's Approach is practiced. If you are unfamiliar with this approach to caregiving please consult your library. There are books available that explain the approach. It is gentle and loving. If you are trying to give care alone please search for support. I love our people. They are wonderful individuals. Some of them are able to communicate with only limited difficulty and some are almost unable to make any of their wants and needs known. God Bless....
Kay L.
Florence, OR
As a long term care worker, I have experienced this dreadful disease from the other side. I have been there for the families and the loved one. I have listened to their stories and have come away a very enriched human. I have learned to enjoy the moment, and not dwell on what might, could, or should of been. I feel these are God's special children and should be treated as such.
Jo W.
Orwell, OH
My beautiful, talent, intelligent Mother is now in heaven taking charge, I'm sure. She loved her family, and told them so. I miss her terribly as she slipped away last Nov. 2005 to go home to the our Heavenly Father. She loved to sew, craft, embroidery, crochet, garden, host parties, & shop. She loved being with my sister & I as we loved being with her. We kept our sense of humor which helped us all tremendously. We prayed, went to church, went to lunch, and carried on "life as usual". We celebrated every occasion and included her in everything.
She spent the last three years in a wonderful Alzheimer's facility and was loved by all. She felt safe there and it became her home. We decorated her walls until there was not a square inch of paint showing, with pictures, tapestry, shelves of dolls she had crafted, dollies she had crochet, and donned her bed with quilts she had made. Her curtains were embroidered flowers trimmed with beads. We put pictures of Alan Jackson in her room, her favorite country singer. We brought her favorite recliner, white dresser, full length mirror, and so many clothes & shoes. She was proud of her room and often called it her condo. Totally enjoyed doing it, and her room was a "show place" for visitors.
Mom, I love and miss you so much I wouldn't have traded a day we had together. "Happy trails until we meet again."
Your daughter,
Kathy F
Largo, FL USA
My mother passed away 2 years ago. She able to live alone, with help, for 1 year, spent 5 years the houseguest of her 3 daughters and 2 in a nursing home. The one thing I would like to share is that all of us who are left behind and may have this disease in their future should talk to their loved ones now. We never had that conversation with her and we still feel guilty that we placed her in the nursing home. My children have been told to find me a room with a view!
Jessica L
Westminster, Ma USA
My mother-in-law died in February 2006 after a very long battle with Alzheimer's. Except for the disease, she was very healthy, taking the disease to the very end stages. She was a very active person being an avid knitter, also sewing and quilting, even finishing some baby quilts after we knew she was affected with the disease. It was difficult taking her to a nursing home (my father-in-law had taken care of her for years) but, it was a complete relief to know that she was very well taken care of by a wonderful & caring staff. My father-in-law joined her in the nursing home and just recently moved to assisted living. We were very fortunate that he was able to share a room with her and be with her until the end. One thing family members need to remember is taking care of someone does not always mean keeping them at home. You must also keep a sense of humor! Sometimes you just have to laugh, not out of disrespect but, to keep your sanity. My own mother also has Alzheimer's...it just doesn't go away! Keep your faith and remember the good times.
Kay
Hilliard, OH
I am in the beginnings of this mind robbing disease and as a health professional I know what is ahead for me. I have told my loved ones that they are to only look after me as they can and not to feel (ANY) guilt when the time comes that they can not do so. I have worked with too many people to even want to put my loved ones through what is ahead but when it is too much for them...and it will become so...they are to let go and put me where I will be safe even if happiness may not show...I will be knowing they are OK.
Linda D.
Jacksonville, FL
Four years ago I noticed my mom changing before my eyes. Her whole mannerisms changed and I asked her to go to the doctor and let me come with. She hid her problems with her memory so well that I had no idea what was going on. Two years ago she was diagnosed with "depression" and this year she was finally diagnosed with Alzheimer's. I am one of the "sandwich generation" home with my eldest daughter who is mentally and physically handicapped and now I have my mother living with me. I want to tell people to just do what you can, but don't overburden yourself because it will cost you in the end. I plan to keep my mom at home with me as long as it is safe and feasible and then will promise my self not to be hard on my self if I can't keep her with me any longer. That seems to be the hardest part for me so far. Our parents cared for us, so shouldn't we try to keep care of them? I am fearing the future, if she "changes" to become bitter or physically or verbally abusive which I have seen happen. That will be the saddest moment for me I think. But I am staying in the moment and taking it day by day.
Robin
Anacortes, WA
MY MOM HAD ALZHEIMER'S. IT WAS SO HARD TO SEE THIS PETITE, BALL OF ENERGY HAVING THIS DISEASE THAT I COULD'T HELP HER WITH. I HAVE OFTEN SAID THAT IF SHE HADN'T LOST HER SIGHT, WHCIH CAUSED HER NOT TO BE ABLE TO CROCHET,WHICH SHE HAD DONE SINCE AGE 4 OR 5, DO HER CERAMICS, HER NEEDLPOINT SHE WOULD HAVE BEEN SO HAPPY. NOW MY OLDEST DAUGHTER WHO WILL BE 48 ATE THE END OF THIS MONTH SEEMS TO HAVE IT ALSO. MY PLEDGE IS TO MAKE A QUILT IN MY MOM'S MEMORY. SHE DIED THREE DAYS BEFORE HER 93RD BIRTHDAY. SHE HAD HAD THE DISEASE FOR 10 YEARS.
JOANNE L
SACRAMENTO, CA
To All of you who have Survived your loved ones with Alzheimer's....those who may be going through it now.
I give you my courage...
I give you my strength...
I give you a piece of my heart..
I give you a giant hug that will never end...
I give you a never ending prayer, that will keep your mind at peace...and know that your parents, or loved ones, knew that you loved them. Those of you who are working through what must be a horrible time, please accept my prayers..I will pray for all of you.
My mother taught me something growing up ( I am 56 years old) "God only gives us, what he thinks we can endure."
I told God in many a prayer, to dish me out whatever he wanted...just never ever take one of my children or grandchildren. God has challenged me, I've lived through all the things I didn't know I could possibly even know about, never mind living through them.
But, I do without a doubt, believe in God and Him answering my prayers. I don't know about Alzheimer's, not like the people on this site. I don't claim to begin to understand it, but I will tell you this: something brought me to this site, and I don't sew, I never liked sewing (on a machine, however I do like sewing little things by hand.) So, why I ask you, am I here? Love brought me here, through a friend I care dearly about. So it's, exactly what I said, I give you all that I can...
Nancy H
Clovis, CA
When my mother was diagnosed with Alzheimer's, I wrote a collection of poems to help me deal with the situation. I eventually learned to accept her "reality" and to find reasons for laughter. This poem expresses my concept of the disease - one of continued loss.
Loss
Alzheimer's is a cruel disease.
It takes our loved ones from us prematurely.
It is not a death,
But a divorce.
There is grief with both.
Yet we continue to be confronted with a physical presence,
A reminder of what was...
And of the potential,
However unrealistic,
Of what could be,
If only....
we could make them understand.
Eileen J
Louisville, KY
My Mum died on 4th July, 2003 aged 85 years, after a 5 year ordeal with Charles Bonet Syndrome (which causes the person to hallucinate and leads to dementia). She was so frightened by these constant visits from people who in the beginning she knew could not possibly be there. At least when she developed dementia she was no longer frightened because she believed what she saw. My Mum was a fun loving happy woman before these diseases set in but within a short time she became depressed and confused. Some of the letters on this forum speak of happy experiences, but ours was not. I had a terrible time dealing with the change in my mother's personality and with the fact that she forgot who I was. It did not take long after she had passed away for the pleasant memories of her to return. I miss her so much but I missed her more while she was suffering from this insidious disease. I don't know if there is a similar project here in Australia but I wish you all the success in your effort to raise funds to find the answers to defeat these debilitating range of diseases. My brother aged 65 years was diagnosed with Alzheimer's this week, so it appears my family's sadness will continue.
Marjorie T Sydney, NS Australia
I have just discovered this site and the Alzheimer's Art Quilt Initiative and once again, i am amazed at how many people this disease affects! My mom has Alzheimer's and has been diagnosed for about 4 years. She remains "pleasantly confused" and although she thinks i'm her baby sister instead of her daughter, I am so thankful she still knows my name and is happy to see me when I visit. She has lived in an Alzheimer's facility for about 2 and 1/2 years and at first, she and my sister and I had a terrible time adjusting. But, within a few weeks, she did adjust and now is very content and for that again, i am very thankful. My heart and prayers go out to anyone dealing with this devastating disease and the best advice i can share is to contact your local Alzheimer's Association. They are a wonderful, compassionate group and have invaluable information to share. Also, do anything you can to raise money for Alzheimer's research! The Annual Memory Walk is a very easy way to raise money and awareness for this very worthy cause. I am a beginner quilter but hope to participate in some way, whether making a quilt to donate or to participate in the online auction; what a fabulous idea! Also, will be going to the quilt show in Nashville, TN in August and am so excited that i will be able to view the quilts! May God bless all those with Alzheimer's and their caregivers!
Kathyn
Louisville, KY
My brother and I figured out that our Mother had Alzheimer's a long time before we had her officially diagnosed. We took care of her as best we could. She was very proud and never admitted there was anything wrong. She told me she could not have Alzheimer's because she could not spell it. I took meals to her for about a year and went with her to parties. Her friends were wonderful to continue to invite her (and me) while she could still enjoy it. My brother gradually took over her finances and she began to confuse him with our father. That became quite poignant and it was difficult for him, but he played the part when he could. He changed light bulbs and I helped with her plants. She called me one night and said that Mick Jagger was in her bedroom and she couldn't get him to leave. I went right over—the batteries in the remote were dead and she didn't know how to turn off the TV. My brother and I explained to our families that we HAD to keep a sense of humor about it all. After her diagnosis, we got her around-the-clock care. Since she never accepted that there could be anything wrong, this did not work extremely well. We knew she was fed and driven where she wanted to go, but she would not let anyone into her bedroom. After I noticed bruises from falls, we admitted her into a dedicated Alzheimer's facility. She was LIVID for a while, but settled in and thought she worked for the activity director. We went by often to visit and see if she needed anything. As she forgot who I am, she would tell me she couldn't visit, that she was working. As long as she was happy, that was fine. The part of her that was my mother was long gone. Now she is in the final stages. Twice she has been so bad that we thought it was the end. Twice my daughters (in their 30s) showed up and fed her ice cream and she recovered! They joke that she can still rally the troops! She has had a good life and we are so fortunate that she has had such good care. My husband and I recently moved to another town--not without some guilt, mind you--and I see her less frequently. I know I was there when she really needed me. I know we have done what we can to be sure she was both safe and comfortable. To know that she was happy is an added bonus. Each patient is unique. Alzheimer's is an Alternate Universe. You do what you can do. I can quilt. It is my privilege to participate.
Gay O.
San Angelo, TX
What a wonderful idea for a quilt. It's 5 years since my Mum died. She had Alzheimer's for a number of years and unfortunately I was unable to continue caring for her at home. Placing her in a nursing home broke my heart, and I share the guilty feelings expressed by some of the other contributors to this site. But, my Mum wouldn't want me to feel bad and, in spite of the negative experiences there were lots of positives. I think we sometimes tend to focus on the Alzheimer's part of a person's life and to forget all the good things that happened before the illness began. Although the illness caused a lot of sadness there were also some amusing episodes and our love for each other moved onto a different level. I think the beautiful quilt is an opportunity to enjoy (and sometimes cry over) memories but also to incorporate them into something beautiful which, like our memories will last into the future. I wish there was a similar project here in the UK.
Susan
Barnsley, York UK
Seems my mother started Alzheimer's about 6 1/2 years ago. She has been in a nursing home for 5 years now. She doesn't say anything anymore, but still laughs and smiles. She doesn't know us, other than people who come to visit. One of my last good memories before she went in the home, was when I took her shopping early one Sunday morning. When we were done, I suggested lunch. Of course she bickered and complained but we went to Friendly's and we ordered pie and ice cream at 10AM. She was so excited and I was happy to please her. But the looks we got! Still laughing and grinning!
Lori K.
Enfield, CT USA
Thanks for giving us this chance to share our feelings. My mother died on January 1, 2005 after a long battle with Alzheimer's. I don't know when the disease began but looking back, we think maybe 5 years prior to her diagnosis. Mom was a homebody, not very active, so it was hard to see a difference in her behavior until it became really bad. One day she asked me if my two daughters were my children. That is the definitive moment for me, when I had no doubt that she had AD. It was before her diagnosis. She lived with my divorced brother until she became very ill one summer and was in the hospital a number of weeks. It was then we decided to make the transition to a nursing home. I truly wish that we had contacted the Alzheimer's Association for help. We felt so pressured to get her in a NH, I think we made a hasty decision because of pressure from the hospital. Once there, however, she declined rapidly. In many ways, I am grateful that she did not linger with this awful disease for years. She was not one of the happy, placid AD patients. Mom suffered from extreme anxiety. She was fearful most of the time. If left alone for any amount of time, she would begin screaming. She was very manic & sometimes aggressive. She rarely slept, in spite of huge doses of anti-psychotics and anti-depressants. She hallucinated, fanaticized, believed her mother was still living, wondered why long dead relatives would not visit her, begged us to take her home. It was hell for all of us while she was alive and hell after she died, for me. In spite of knowing she was in a better place, out of her misery, I lived with the guilt that so often accompanies such a disease. Did I do enough? What would she have done for me that I didn't do for her? Did she think we had abandoned her? It is just horrible. Even now, I wonder. I miss her and I hate this disease. I pray they find a cure, and every year, participate in the Memory Walk to try and raise a little money to help the victims and families who suffer from this cruel, relentless disease.
Deborah M.
Mableton, GA
My mother just went to heaven on May 12, 2006. She was diagnosed with dementia in October of 1999. I was her 24/7/365 caregiver. She was my five foot two year old. We were blessed by her up to the very end. She would laugh and sing and pray. She loved eating, especially ice cream. She was thrilled when my sister would come home from work. She would raise her arms for a hug and say "There you are!"
Mother was a quilter. She has several quilts with the Illinois Historic Society. She would have loved to contribute her quilting skills to your endeavor. Bless you.
Linda Lake Villa, IL
My grandmother, Bertha, was an amazing lady. She was the sole care-giver for her husband Edwin. He lived at home as long as she could keep him safe. It became very hard for her as he was a farmer and farmed all his life. This continued even through his Alzheimer's —even though it was at the end only in his own little world. His problem wasn't temper but wandering and repeated questions and/or conversations. When someone has to be around another for an extended period time, it can be very wearing on a person mentally to answer the same questions continously. As time went on my grandmother had to place him in a nursing home. I know that this was a source of great guilt and self doubt for her. Her health would become worse as she couldn't sleep for fear that he would get out and become lost or hurt. The other concern for her was that his family (sisters/brothers) were not supportive and they thought that she should have kept him home. I hope that she made peace with this before her death. During his time in the home he eventually developed a bedsore on his coccyx and other problems. I had the opportunity to visit with her and offer her some advise. I am a nurse so she felt she could talk to me I suppose. She was questioning whether or not to put him through different tests. He was at this time far into his disease process. Here is the advice:
WILL WHAT YOU FIND MAKE A DIFFERENCE IN HOW YOU TREAT HIM MEDICALLY? If you find cancer will you treat it? Will it be worth it to put him through all of the medical procedures and will it improve his life? If the answer is no to these then just keep him comfortable and not put him through the stress and changes. I know that she decided to keep him as comfortable as possible and give him dignity. Also, this his health was declining at this time. I think she made peace with it. Her son & daughter helped as much as able and my dad visited often. She was the "mom" who raised us with my dad; she was my friend and my hero.
Carol G.
Lansing, IA
These patients are and always will be special lambs of God. They may in time forget the Lord but they should be told that He will never forget them...
RoseMarie M.
Milton, VT
I was a caregiver for over 10 years for my husband Chuck who passed away 1-17-04. My heart goes out to all that have a loved one with Alzheimer's disease. If I can help in any way email me..... God Bless
Carolyn Haynali spokesperson & founder
www.caregiversarmy.org
Berlin Center, OH
Thank you for this page to reflect on personal experiences with Alzheimer's disease. My Mother, Marjorie Neal Duncan, was a lovely, talented lady who gave much of her life after my father's death in 1974 to visiting the shut-in sick, hospitalized, and those in nursing homes. Her own aunt was ill for many years with Alzheimer's disease and she served as a helper before it was necessary to place her in a nursing home. At that point she visited her a minimum of twice per week until her death. She translated her own loss into service for others who were ill and dying. In her church, she helped develop a group of ladies committed to regular visitation of the sick and their families. This group developed in the mid 1970's remains active today.
While Mother made only one quilt that I know of, a yo-yo quilt, made at age 13 in 1928. Today that quilt is in the textile collection at the University of Alabama Clothing, Textile and Costume Design Museum, located in the Mary Harmon Bryant Building on the campus of U of A. She was a needle worker and seamstress from an early age and received her Bachelor's degree in clothing and textiles at the University of Alabama in Tuscaloosa, AL. After teaching home economics in her hometown, she went to New York to work at the textile company A.M Tenney, Co. It was while working there that she received a scholarship to attend what was then The Philadelphia Textile Institute where she was one of three women in her graduate class. During WWII she returned to NYC and A.M. Tenney to work with developing synthetics for the war effort. All through her life she loved textiles, needlework, and sewing. Although she did not continue with the weaving she learned at the Philadelphia Textile Institute, her design books are helpful to university students today and her love of hand woven textiles continued throughout her life.
In about 1960 she had a severe head injury sustained in an automobile accident. After that injury, she had difficulty with many cognitive tasks. Her mother and husband helped her and disguised this disability from friends and even family. Alzheimer's is quite prevalent in her paternal family, at least 4 consecutive generations that are known. She slipped into Alzheimer's quite slowly and silently and was alone to make important decisions and navigate life. She was vulnerable and she was often taken advantage. She was unable to understand or think through complex situations and later even simple ones. Her refined social skills masked her illness from many and others, especially extended family, were impatient with her and often excluded her in family gatherings and information. As she declined and moved from her home, these family members acted as though she was already dead. They did not realize that Alzheimer's patients often comprehend much and recognize many, especially those known in childhood and young adult years. They could not comprehend that for the only caregiver, her daughter, that a word of comfort or concern would have been a great gift. These words never came. They would have been surprised to discover that although much of her memory was lost, she remembered family members and she never completely lost her grace and social skills, maybe because they were so strongly imprinted in her brain and life. Perhaps family members did not want to face that another generation was marked with Alzheimer's disease, perhaps they were busy and self involved, perhaps they lacked the wisdom to know exactly what to say or do. Alzheimer's disease is the most all consuming disease for the caregiver. The patient is vulnerable at all times and at risk for falls, anorexia, stroke, and neglect or abuse by nursing home staff even in the most modern and expensive facilities. The phone can ring at any moment and the concern is always there. It is like caring for a baby, except that the baby does not grow and develop new skills, she loses some skills each day. Taking my mother to a physician's office or the hospital was a major and traumatic experience. I had to enlist friends to go with me, so that I could drive and someone could watch my mother. As she became progressively worst, a nurse was hired for this task. Routine tasks became major hurdles to jump over. Stress and her needs became a lifestyle for my husband and me. My mother had handled her money poorly and was often the victim of her vulnerablity. The cost of care for an Alzheimer's patient is astronomical and I worried that she would outlive all financial resources. She was blessed to have very good physical health until months before her death. She fell many times as she paced for 18 hours a day looking for family members and friends. However, she was blessed with good bones and only broke one small bone in her foot during her entire illness.
Major declines to a lower plateau were unpredictable. There would be no warning, when it occurred; one had to be ready for immediate changes in care and location of care. Often there were no available openings in these special facilities. Often I was told that they did not take ambulatory and confused patients, only confused patients who were bed-ridden or ambulatory patients who were of sound mind. It was a hard lesson to learn about the lack of resouces available for Alzheimer's patients. Fortunately, finally the Methodist Church's retirement home and nursing home with special facilities for Alzheimer's patients had an opening for Mother. She lived there her last two and a half years and had excellent care. However, during a bout with pneumonia, we brought her home and she died peacefully with Hospice staff, nurses, and her daughter and son-in-law with her. She died in complete peace and I believe that she knew she was home. Several months before she had a major fall and was quite bruised. She told me very clearly, that 'heaven would be better' as she pointed to her bruises. Yes, heaven is better. She died in my home in Alabama 12/7/1999. I am learning that though she has been dead for almost 6 years, the caretaker has great amounts of physical and emotional healing to overcome.
My mother does not have grandchildren, siblings, or neices and nephews. It is my hope that she might be remembered on this very special web page and her lifelong love of textiles, weaving, and needlework will be documented here. Marjorie was a very special person who graced her friends and family with the elegance and love that I hope will be long remembered.
God bless each caregiver and person who has this life altering disease. May God bless you with strength and comfort. I pray that researchers will uncover treatments, cures, and effective prevention for Alzheimer's disease.
Marion R.
Broken Bow, OK
March 11,2006 was the 1st anniversary of my Mothers death from Alzheimer's disease, after 7 years of suffering. Oddly enough, this is the one disease where the family of the afflicted person heartily wishes for that person to get worse. At least, I did. Since the onslaught of this horror on my Mother, 8 years ago, the happiest day of my life was when, one day, I walked into the nursing home to visit her and she actually smiled at me, with genuine pleasure yet!! I knew she had finally gotten to the point where she did NOT know what was happening to her anymore and she was content. Alzheimer's is such a horrible disease because the person who succumbs to it can have it for years and all the while they KNOW what is happening to them. Can you just imagine the absolute horror of knowing, day in and day out, that your brain cells are slowly dying and there is not a darn thing you can do about it??? Except, of course, to get to the point where you are so bad you don't remember anymore. Then you can be content. The last 3 years of her life she was relatively happy. Although our faces were familiar to her (my husbands and mine) she forgot our names. But you know what?? She had always loved music, for humming along with and dancing to and right up to about 2 days before her death, she remembered most of the words to all of her favorite songs. We would take her outside, in a wheelchair, to the nursing homes Ice Cream Parlour and while we sat and ate our ice cream we would sing, loudly. Most of the other patients in there with us would join in, even. Mom knew all the words to "America The Beautiful", "Blue Skirt Waltz" and "Tennesee Waltz" to name a few.
So, for all you people out there who have a loved one with this horrible disease, my advise to you is "Sing to them, sing your hearts out, long and loud!!" You might be surprised, pleasantly I hope, if your loved one just starts singing along with you.
Karen K.
Phoenix, AZ
I'm a nurse and have worked in nursing homes most of my life and worked with people with Alzheimer's. It is a very sad disease and effects people in different ways. I have worked with families that are devoted and some that drop mom or dad and never come back. It is very hard on the families. Each person is different and the nursing staff looks for ways to take care of each person. It is a challenge for the families and the medical staff. Keep up your good work. Maybe some day we will fine a cure for Alzheimer's and cancer.
Lori T.
Fort Benton, MT
My wonderful Aunt Edith was a part of my life growing up. She was a marvelously strange and very humorous person, and I loved her dearly. When she was diagnosed with Alzheimer's both her children abandoned her. So I took over. I took care of her for just over 10 years, with not one single visit from either of her children, one of which was a doctor no less. When my Alzheimer Aunt, as everyone called her, died two years ago, ALL of the estate went to her two children, with me getting nothing. Not a big deal, I had my wonderful Aunt!
Glenda P. Baton Rouge, LA
The guilt was horrible.....couldn't I have done something more. What warning signs did I miss? A complete change in mom's personality convinced me that I had lost her to a different (internal) world. She slapped, pushed and hit me, behaviors I had never known from birth to age 56. Doctors diagnosed Alzheimer's.
About 3 years later, in May 2002, I lost mom again to a better life. She had become a stranger to me as I had become to her. The behaviors she exhibited ceased, but the pain of losing her twice continues. Alzheimer's is a horrible disease.
Sandy E.
Boulder Junction, WI
My mother at age 48 started displaying some Alzheimer-similar symptoms. But it was 1982 and no one was sure. Twelve years later she died, but we're still not sure that was the disease she suffered from. I was 15 when she became ill and 27 when she died.
There were so many changes for both of us in that period, I feel like it has taken the next 12 years since her death for my siblings and me to even begin to comprehend her loss and ours, to understand the incredible stress placed on our late father, and to learn to be a family without her at the hub.
Mom never quilted but loved to sew and was my earliest teacher of all things needle-related. In college, I had stopped all my needlecrafts, thinking my time too precious and sophisticated as I flung myself into preparing for a career. How silly. Two years after her death I took a quilting class and was hooked. And now, when I find a way to steal time to sew, I feel I am the closest to her, doing something I know she would have enjoyed and making something she would have appreciated like only a fellow craftswoman can.
Just this weekend my sister passed back to me a cross-stitch Mom had done for her mother. I'll clean and remake it, making it my newest heirloom. She is missed everyday.
Joni J.
Tallahassee, FL
We lost our mother in law to Alzheimer's about 10 years ago. It was curious to see her disappearing, then the mood swings first she was fine and docile then angry and in attack mode. Then she "forgot" how to hold her fork and eat, our son, at the age of 4-7 "helped" her by holding her fork and taking it up to her mouth then saying, "Grandma, now open your mouth and we'll put the food in."
My father in law sent her to a nursing home for the last three years of her life. It was sad, but a relief when she died. Just two years later, our father in law died. We spread their ashes out together.
Margaret K.
Berkshire, NY
Unfortunately my experience with Alzheimer;s is watching what my mother is going through. She was diagnosed when she was 65 and went into care three years later. My dad just couldn't cope with her wandering and getting lost. There is just my brother and myself and my brother has chosen to ignore the whole situation with mom. So that leaves myself and dad to deal with mom's care. Now mom is in the final stages and that is very hard to see for us. She was once so vibrant and tended her beautiful garden - it breaks my heart. Dad is ever vigilant and goes to the care facility twice a day even though there are days on end where she won't eat a thing. He has given up everything even his home and dog. They just celebrated 50 years of marriage and it was a very hard day for dad. I remember their 25th was such a big party and celebration and here it is 25 years later and all we could give mom was a little corsage that she didn't even know was for her. I cherish every day she is on this Earth but am prepared for the time I visit her to be the last. On that day I will rejoice silently because she will be in the loving arms of God.
Heather K.
Calgary area, AB Canada
My mother has been diagnosed with dementia and it is so hard to watch the woman who raised me and my three sisters become a stranger. Who would have ever dreamed this would happen? What's hard is to understand WHY? She is a good, kind, strong and caring woman who raised all of us to be strong and caring. But to watch her retreat into a whole different world is probably that hardest thing I've ever had to do.
Suzanne M
Hayward, CA
My dad was diagnosed with Alzheimer's 3 years ago in February. Without the support of the Alzheimer's Association I honestly don't know where we (I) would be. Dad has shown me his amazing ability to be brave in the face of this evil disease. When he was first diagnosed he said "this is the hand I've been dealt." I on the other hand was very sad and angry (but put on a smiling face for him.)
Utensils are now very challenging for him and he needs assistance getting dressed. Still he smiles and laughs. If I can do nothing else my mission is to keep him in good spirits. Hardly enough, but all I can do.
With the help of the Alzheimer's Association and other caregivers we have met in our support group things are easier to understand. We all understand each other, support each other and protect our loved ones together. Oddly enough, I have learned more about the kind of person my father is since he was diagnosed. He is an amazing person.
Sadly we lose our loved ones with Alzheimer's slowly, one loss at a time. The tears are there, but so is the laughter. A sense of humor and laughter is a huge help during these times.
Last week dad was having a difficult day and I wanted him to sit and eat. He said OK but wouldn't sit. So I asked him to dance — and we did. We laughed together. He felt better and he sat down and finally ate.
God bless all of you and your loved ones. If you haven't already contacted your local Alzheimer's Association, PLEASE do so. They are there to HELP you and your loved one.
Lea
Port St. Lucie, FL
My husband was diagnosed with Alzheimer's disease one year ago. In 1993 our 23 year son died tragically and my husband and I were each others strength. In 2000 our 35 year old son died in a boating accident - can you possibly bear the loss of two children? My husband and I held each other together, again. Now I see I am losing him in small steps. We are shoving into life as much as we can, while we can. Last week I bought my first video camera so that I can make videos of friends, family, and our life. I think they will be useful. I gather great strength from my love of art and sewing.
Colleen L
Kitty Hawk, NC
My mom, Valora, died a few years ago after having this terrible affront to life and my dad taking such good care of her, even tho she called him "the man who lives here." They'd been married for 60 years.
It's heartbreaking to read your other stories, but no one has mentioned what concerns me the most. For so many other diseases, there are things you can DO to avoid them; stopping smoking, losing weight, exercising. But for this, as far as I can tell, there is nothing we can do but wait to see if it strikes the rest of us in a family.
That's why this quilting project is so important; at least it's something I can do, both for my family and for others.
Thanks so much for this opportunity, Ami.
Annie N. Chicago, IL
My father had Alzheimer's and passed away at 66 years. My Mom cared for him except for the last few weeks of his life. My parents were extremely close and related to each other very well. They had five children and a good life. My parents saved carefully for their retirement but it never came. Dad was too sick before his retirement. He was a very well respected man by his family and co-workers. My Mom asked me repeatedly...Why him?...I had to think about that and concluded that Dad had always looked after us. It was now our challenge to find our own strength and look after him and still have that respect for him that he had earned.
I have learned many things from my Dad even more after his death and continue to make sense of the things he told me as I grow older and wiser.
From the nature of his illness and death, I learned not to take anything for granted and live for today because tomorrow may never come.
Stephanie W
Nordegg, AB Canada
Alzheimer's took my sister after a long 10 or more years. She had been a wonderful artist and was one of the sweetest women I have ever known. I too, have found that my great-grandmother died with the dreaded disease, and worry about myself and my eight grandchildren and their children too. One of the hardest things to deal with in Alzheimer's is the loss of your loved one truly years before they die. Only bits and pieces of the original being remain while the dear one fades more and more while dealing with aggressive or unusual behavior, uneducated people or inadequate help is exhausting and heart breaking. The good news is that research shows there is great help on the way and it's most reassuring to know there could be real medical breakthroughs within the next three years.
In the meantime, respite care and kindness are as important for the caregivers as they are for the victim of Alzheimer's.
Quilters can always help with their quilts and prayers.
Melinda Y.
Seattle, WA
I am a quilt shop owner here in the UK, My husband of 60 was diagnosed with AD 6 1/2 years ago, although we now know he had it for 2 years prior to that. We managed to travel quite a bit in the early onset stage and often look at the photos of one of our lovely trips to New England in fall, he loves those photos because of the lovely tree colours, we did some hiking on the Appallation trail and I made a quilt to commemorate that which I called a WALK IN THE WOODS. To anyone out there who is a carer , just try to keep a sense of humour and take it day by day. He still know us and when my lovely son comes through the door to see his dad Dick my husbands face lights up and is a picture. He is not the person I married 40 years ago but just sometimes a little bit of him shines through.
Sue
Cheltenham, gl UK
There were so many touching emails. I just had to say to all who wrote thank you. My dear mother had Alzheimer's at age 89, like her own father who lived until 92. She had always been an active person, who could out work people half her age. She did many thingslike: sew, quilt, garden, and did all types of needlework. She passed away May 14, 2005. We were very close. My father had passed away in 1978, and I was an only child. It was hard when I had to make a tough decision to put her in a nursing home. On the drive home, I cried most of the way. I had a chance to talk with a few of mom's siblings, who understood, and thought it was for the best, but I still felt bad, just the same.
I would visit her often. She was in the nursing for sever years,in those years, I could see her stages changes. She got to stage where she didn't talk, she would use non-sense words. She never got the flu, or had to take other medicine and the staff couldn't believe how healthy she was. They were so good to her and am glad to have this small nursing home. My mom passed away early morning. The nurse felt bad, because she had just checked on my mom, and then the next time she was gone. Since my mom was a early riser, it was just like her and I knew my mom would go just like that.
For those who have or had loved ones with Alzheimer, remember them for all the good times. Remember the joys and laughter, do as much with them as you can. There was an ad used - which comes to my mind in this matter- A mind is a terrible thing to waste, but that is what happens. Seeing the stages- first they get confused, upset, mad. They still talk, but words get changed, misplace for others.
Next stages- revert to later years of their life- they might not remember grandkids, their children, or spouses. They will remember their own childhood, but then that gets mixed up also.
Later stages- are the hard ones to go into, but very sad.
I guess it was like change from an adult back to infancy.
Hopefully they find help for Alzheimer's.
Colette S.
Forest City, IA
I lost my mom to AD 10 years ago this June. My sister and I visited her at the cemetery today. I live in IL, and Mom is in NJ, so we don't get to go very often. I have recently found out that my mother's mother (my Grandma) and her mother (my Great Grandma) all had AD, so the genetic link is very clear. My daughter is an only child, and I wonder how she will be able to handle all of this, especially since I am a single parent. I hope that Ami's work will help bring awareness of the disease to many, many people, so that Kiersten will be able to find help and support when she needs it. I miss my mom every day. My Dad took care of her until the last year of her life, when she was in a nursing home. Even then he went to see her every day. It was a hard choice, but it was the right one. And we were very fortunate that she never fought the hospitalization, never cried to go home. She was happy as a clam until the day she left us. That was a true blessing. My advice? Pray every day for the strength to get through one day. Take it one day at a time. That's what I do, even now.
Lynn F.
ZION, IL USA
My mother died from Alzheimer's in August, 1990. She had the disease for at least 10 years.....and of course didn't know me or my siblings for such a long time. But one thing I remember and cherish happened at Christmas time a couple of years before she forgot who I was. She had had an anxiety attack on Christmas evening and had become totally disoriented, and insistent that she should be allowed to "go home" (a frequent desire, even when she was home!)
Dad had a hard time that night getting her to settle down and go to sleep. The next day she was much better, and we were sitting together on the couch when she said to me "I suppose your Dad told you about the dumb-dumb thing I did". And when I replied "Which dumb-dumb thing?" She laughed so hard. She kept her sense of humor for a long time into this ordeal. I miss her so much, because I lost her so long before I truly lost her.
Kay M
Beaverton, OR
My father-in-law died in February of 2004 from Alzheimer's at the age of 92. He stayed at home with us, it was both tough and very rewarding. He never fully understood why he was there, was constantly trying to go home. Disappeared on an occasion or two, scared the life out of us. The last 8 years or so, didn't know his own son, thought he was the help. Though he always knew to trust him, right till the very end. There were days we were so frustrated and tired, but looking back, we're so very glad that we got to take such good care of him at home. We honestly think he lived a longer, better quality of life. Even at the very end, he would have an occasional burst of "sanity" and make total sense. I look back on those moments as miracles. They still make me cry. Though there are tons of times I was so very mad, I'm so very glad I was able to help take care of him. My own father died at 48 from a sudden heart attack, no goodbye, at least we had a very long goodbye. I pray that the research zooms ahead and they find cures or at least medicines that hold off the progress of the disease.
Donna W .
Warrenton, VA
Things happen in strange ways. My husband and I were going to sell our home after my step-daughter graduated from high school. We were going to buy a motor home, travel and sell at arts and crafts shows. When we realized we still needed a home base, we remodeled my mothers basement and garage into an apartment for ourselves. I thought it would be a way to see her more often. Bought the motor home and started traveling. We realized that mother was getting very forgetful. I took her to the doctor and he put her on Aricept. After about a year, he added Namenda. She has also had problems with depression and has become extremely negative, even though she has been well taken care of and comfortable her whole life. She is also starting to have panic attacks every few days. She doesn't want to do anything but sit and do crossword puzzles so I don't have to worry about her wandering, but she is segregating herself from her friends. I have an appointment with a social worker that deals with geriatric psychologists to see if we can make her more calm. I read all of your stories and it frightens me about what is to come. At least we are here to help her. If we had started traveling full time, we might not have realized the extent of her memory loss.
Sue S.
Nashville, TN USA
My great-grandmother, my grandmother, a great-aunt and my aunt all suffered for years with Alzheimer's disease. A cousin, whose mother had a fatal heart attack, said to me some time after my mother died from cancer, "I suppose this will sound like a pretty cold thing to say, but I think you'll understand. I think *our* mothers were *the lucky ones*." Not that I would wish cancer on anyone, but I *did* understand. They were the only women in several generations of our family NOT to get Alzheimer's.
I was very close to my aunt, my mother's only sister. It pained me greatly when she, not only didn't know me, but insisted she'd never had a sister. She still had short lucid periods then. The last truly enjoyable time we spent together was at a quilt show. I don't know that she had the foggiest notion of who I was or where we were, really. My aunt was about the finest seamstress I've ever met. Although not a quilter herself, she was interested in quilting (we had family quilts) and loved color and fabrics. She enjoyed paging through the big family photo album I'd brought hoping it would jog her memory (it didn't much), but her eyes just lit up when I brought her in to see all those beautiful quilts! Her attention span even improved considerably as she listened to the stories behind some of the quilts. I'm glad I took pictures.
Janice F.
New York, NY
My husband has Alzheimer's. I keep thinking that I can have conversations with him, but come up short because he really cannot converse any more. It is sad to see him lose his abilities, inhibitions, and self respect. It is hard to have a relative with AD, but when it is your spouse, it robs you of the chance to share the pain with your significant other.
F.
Ausitn, TX
My mother was officially diagnosed with Alzheimer's in spring of 1999. Up until then, the memory and repeating of stories was attributed to her quadruple bypass surgery. She would laugh it off when she realized she had told the story already. In June of 1999, her brother died and when we returned home, she became sick with bladder infection. Doctor put her on medication for that and started her on Aricept. Bad idea!! She had quit going to her senior center, to the beach or to walk in the azalea gardens near her home but would tell me she went everyday. The day she asked my son to drive to Norfolk to pick her for a visit (she loved to drive) told me something was wrong. We placed her in nice assisted living, her own apartment in a medically controlled environment. She is mid stage right now. Since moving her, she has quit painting or quilting. Her quilts are stunning and perfect. She will tell visitors that she has painted the pictures on her wall or the quilts in her room since she has been there, when in truth, they were done prior to illness. At first she had quilt I had pieced on her frame to quilt-half done now. She will never finish it but when I do, it will always be a memory I can cherish.
Cheryk P.
Upper Marlboro, MD
Oh there are so many things I could say about Alzheimer's. I lost my mother and an uncle to it.I have worked in nursing homes for over ten years and I have known many patients in various stages of the disease. I have known their families and their pain. I'm sure that this disease creates so many frightening and insecure feelings to its victims. They are so afraid and change is so disruptive to them. I think it might feel like being lost.
My mother and my uncle suffered many years until they no longer remembered how to eat and swallow. They were gone from their family for years before death finally took them. My mother was my best friend. It was so hard for me to go see her after she forgot who I was. My heart goes out to all of you who live with family members who have this disease. I think that I would like to give you two pieces of advice as a result of my experiences. One is to never feel guilty. You will do what you must do. If putting the loved one in a nursing home is necessary for their care that is alright. If they are angry and argumentative remember it is the disease not you and not your loved one. The other thing I would like to tell all of you especially the husbands and wives. Do not jeopardize your own health to care for the other one. I watched my aunt die of cancer immediately after my uncles death. She cared for him at home as long as she possibly could then she spent her days at the nursing home caring for him. It is admirable and it was her choice but it destroyed her health.
My heart goes out to all of you and I hope and pray that we find a cure for Alzheimer's ver, very soon.
Margaret
Talbott, TN
My father-in-law has Alzheimer's and being cared for by my mother-in-law. He is 85 and she is 76. It has been heart breaking to watch this disease progress taking a very happy man and turning him into a shell of the person he was. There are few people he even recognizes anymore. I thank god that I am one of those people as he is so very special to me.
Tari H.
Queen Creek, AZ
My dear mother went to her heavenly reward five years ago and I still miss her as if it was yesterday!!! She suffered many years - 12 we think - but kept her beautiful smile to the end. Mother was a wanderer and quick as lightening, and "got away" from us many times. She was the first patient in the local Alzheimer's Unit, and taught them many valuable things - such as how to climb the fence that surrounded their garden area, how to unlock the windows and climb out to go to the bowling alley next door, how to repair all the toilets in the Unit, and most especially how to make a proper bed. Seven years in the Unit, and certainly not all happy days. Having been a farm wife, all her life, she was always on the go, from early morning to bedtime, so they had to invent things to keep her busy.
I am giving back by facilitating support groups, and would urge all of you to attend your closest group, as they need you for the experience you have - you need them in case they have more experience than you! This is a cruel disease that robs us of so much, but always remember to hug and touch your patient. This is so important to them, and to us as caregivers. Even though it's difficult to watch them go through this, we can learn so much and pass this on to others. God bless each and everyone of you and yours, and keep on "keeping on" for Alzheimer's research.
Joy J.
Danville, IN
My father suffered Alzheimer's for years, or more a aptly I should say my mother suffered from my father's Alzheimer's! I watched her circle of friends dwindle till she was very isolated as a care giver. She was faithful to the end, even when it meant 2 hours by bus each way to visit dad once he was placed in care by the state. And the battle she had to get custodial guardianship back from the state! She is now suffering stroke induced dementia, so her life also effectively ended with my father's diagnosis of Alzheimer's.
Alzheimer's is the worst disease I can think of, it impacts entire families and goes on for years. There are other horrible things out there but they don't drag on as long!
Courage and humour to all who are coping, or trying to. Keeping a sense of humour is so important! It's the lifeline!
Nancy L.
TopEnd, NT Australia
My mother, Betty Clark Walton, had Alzheimer's disease. She and my dad died resulting from injuries in a car accident. Mom was already wandering, wanting to go "home," eating the whole bag of Halloween candy and all those things you hear about.
I have missed her for 10 years, though she died 6 years ago.
She had moments of lucidity, we were at the freezer getting something out for me to cook, and she looked at me with tears running down her face and hugged me hard and said " What is this thing that's happening. It scares me!" Those are painful words to even write, let alone know they came from your Mother!
God Bless all thos with this horrible disease and all those who care for them. It's a hard job either way.
Barb J.
Tacoma, WA
My father was suspected of having Alzheimer's' approximately eight years ago after moving to an adult foster care home (in the Midwest) where he had more regular medical care. Over time, he had progressive declines in memory retention, was unable to follow-through on commitments, etc.
One summer day in 1999, he ducked out of his adult foster care home while the attendant was helping another resident dress for the day. That was the last he was ever seen until his remains were found within a mile of the facility about 10 months later. (He had an ID bracelet, but took it off and left it behind before leaving the facility.)
I was fortunate not to have to be the direct caretaker for a parent/relative afflicted with Alzheimer's. I know others who have been in this position and know it is extraordinarily difficult.
So, my best wishes travel with you and all those who are supporting your efforts!
Ami's note: Please read more about the Alzheimer's Association's at www.alz.org. Click SERVICES, and then select Safe Return.
To read a short story Cay wrote about her father's death.
Cay M.
San Jose, CA
I think that this is a great organization. My grandfather passed away after a very long battle with Alzheimer's. I'm new to quilting and I didn't even imagine that there was such a group as this out there. Thank you!!!!!!!!!!!
Carla
Cranston, RI
I am an Alzheimer's nurse and have done this work for my entire nursing career. This is by far the worst disease I have come across not only for the patient, but for the family members as well. This disease strips the vitality of the patient but worse yet, it strips the family of heart and soul. After years of working in a nursing home, I now do private duty care only. I enjoy the one on one care immensely and for the Alzheimer patient, repetition is the best thing you can give them. The continuity of care is so very important for them. So I urge all families to look to private duty care if it is at all affordable. It is so much better for your loved one. BUT that is not to say that nursing homes are bad. You have to do what is best for ALL of you. Choose a nursing home well though. Look for things like how long staff has been employed...a big turn over says that something is just not "right." Look for activity programs available...in and out of the facility. Check out the PT/OT programs and if it all possible choose a home that has therapists on staff. Check for cleanliness especially when walking in the front door of a facility. If it smells clean, then that is a very good sign. Watch as you tour a home (and tour many if possible before choosing one) to see the interaction between staff and residents. And most importantly, and I do stress this....DO NOT feel guilty because you have placed your loved one in a home. As the disease progresses, it is imperative that safety be the all important issue.
The man I have been caring for for over two years, passed this week. It was sad, but I also rejoice when they leave this world because I know that their suffering is over and they are at peace. I held his hand for 10 hours talking to him and soothing him at the end until he took his last breath. One more important issue that I would like to stress...please KNOW, that all patients hear you right up til the end. They just can't let you know they hear you. So talk to them, tell them that you love them, and tell them it is okay to go. They need to hear that.
I am sad that I no longer can speak to this man and to be with this family. But I do believe that God will put me exactly where I am needed when I am needed, so for now, I will enjoy my time off and take pleasure in being with my family. If any of the things I have written, has helped any of you, then I am happy. Peace and courage to all of you who are going through this disease.
Lori S.
Webster, NY
My mother was diagnosed with Alzheimer's disease when she was only 64 years of age. She died on August 23, 2001. She not only was my mother, she was my best friend. No one should have to suffer that way. It is a degrading, horrible disease that robs people of their dignity and self respect. I took care of my mom until we had to put her in a nursing home. My mother worked for 10 years in a Mental Hospital and always feared Alzheimer's disease and being put in a nursing home. I couldn't stop either one from happening to her. It was horrible, but as a care giver I did learn alot about the disease and how to take care of my mom, without the anger and hurtfulness she could cause. I wouldn't wish this disease on anyone. I and my sister both fear getting the disease ourselves. You try not to worry about it, but it is always there in the back of your mind.
Connie Campbell
Akron, OH
My mother who is 77 has had Alzheimer's for the last 10 years.. My father, who is 82, has been taking care of her up until two weeks ago, now she is in the hospital very ill. Our hope is that she will recover enough to come back closer to home and be in a nursing home. Would you believe that you would ever wish that a parent could be in a nursing home. Not ready to lose her just yet, but know that the real her has been gone for several years. This has to be the most devastating disease! My mother was a great artist, sewing, painting, cooking, and anything else she set her mind to. I would really like to go shopping with her one more time; we had such great shopping trips...
Connie J
Trophy Club, TX
My dearest friend for the past 38 years was diagnosed with Alzheimer's 5 years ago. She is now 63. I've watched a competent, sometimes opinionated, woman become content to sit and do whatever she is directed to do. She used to create wonderful stained glass pieces. Up until a number of months ago, she would talk about the piece she was working on (started 3 years ago), but now she never mentions it.
We belong to a Red Hat Society group and still go out once a month with them. She can't remember the people in the group but is delighted to be out with us. The other women are wonderful to her and make sure that she is watched after. At least for now we are able to continue going out to lunch and looking around the stores. I hope she will be able to continue this for a long time. I miss the "old" her but dearly love the person she is.
Joan P.
Cleveland, OH
My husband developed early onset Alzheimer's Disease at about age 48. We had a six year old daughter. Not your usual Alzheimer's family! Sometimes I wonder how I got through that time but I was fortunate to find a job in my profession and move on. He passed away in 1998 after 12 years of suffering. The whole experience made me a stronger person and I have a good life. I do see that it has effected our children but they have all overcome as well and he would be proud of them. I am now retired and am enjoying more time for sewing and quilting. I am blessed every day.
Vi L.
Bison, SD
My Mom and her two sisters died of Alzheimer's disease. It is the "long goodbye." Although it's been two years since my mother's death, I still miss her. Even as the disease progressed, she had a childlike quality about her, and I could relate to that. But, on the first Mother's Day that I did not have my daughter at home, my Mother looked at me and for the first time did not know who I was. It was devastating. Each step of the journey was a loss - but also the beginning of a different kind of relationship. I was blessed to be present at her death where she reached out to the appliqued heart with my Dad's name on a photo quilt I had made when she first went into a nursing home. My Dad had died exactly 8 weeks prior - and I felt that they were now together again. It's a journey none of us wants to make, but the memories sustain us.
Mary Jo Gonsiorowski
Princeton Junction, NJ
My mother has Alzheimer's and it is a very devastating disease. I know that God has a plan for her and my family, and I have to trust in Him. I at times would like to have my Mother, MaryAnne, just hold me like she used to when I was a little child. My mother was the social butterfly in our family, an avid sewer, crocheter, knitter, and all around glue that held us all together. My relationship with my father was rocky, and without my Mom, "here" anymore it is difficult to be with my father at times. I want so much to hear her say, "Julie, come here my darling, let me hold you close to my heart, just one more time!" It breaks my heart to look in her eyes, knowing that she is just not "all there anymore". Again I know that God has a plan for our family, I just have to trust in Him, and at times I falter because I am only human.
Julie B.
Des Moines, IA
We lost my grandmother to Alzheimer's. While my relationship was rather rocky with her as I grew up, I was able to make up for some of that helping to care for her as her disease progressed. My parents were wonderful caretakers. Even after she had to be moved to a nursing home either they or myself were there every single day. As her disease took her to the point where she could no longer speak, we knew that she could still recognize us at times by the way her eyes would light up when we entered the room. She especially loved it when my children came with us. She would smile the entire time they were there. We miss her but know that we lost her years before her body actually left us, to this terrible disease.
Nancy S.
Houston, TX
I just recently loss two of my favorite Aunts to Alzheimer's. My Aunt on my mother's side died at the age of 91 and she had Alzheimer's for almost 10 years. My mother would go up to Vancouver B.C. and see her every 3 months. Until the day my mother passed away 4 years ago. Then my brother took over the responsibility of seeing her the Day she died (Aunt) they were going to go up and see her that day she passed away.
I also had a Uncle on my father's side who passed away with Alzheimer about 10 years ago. And now recently my Uncle on my father side wife just passed away last month due to it. So I wish that they would come up with a cure for it.
My father passed away in 82 with Parkinson Disease. SO I have history of both diseases on my side of the family.
I hope and pray someday they will have a cure for both diseases.
Cheryl VQ
Port Orchard, WA
I lost my Mother, my last living immediate family member, on March 2, 2006. She was 85. So it is still very recent and the sadness very close to my heart.
Via little strokes she'd lost her ability to speak so the onslaught of Alzheimer's was particularly difficult as she couldn't express what she wanted or felt. Having witnessed my Great Aunt Eva's descent into that world of confusion, I knew that Mom had thoughts inside that she could not express. My Great Aunt had once said that the words and thoughts were inside but she couldn't get them out. But for Mom, with her speech gone, even in the earlier stages of Alzheimer's, she couldn't express her wants or needs and would become combative in her frustration. She'd witnessed Auntie's descent into that world of confusion and now was there also.
I was fortunate to be with Mom those last few hours of her life. But it wasn't easy. And it wasn't gentle. But she needed to have me there and I needed to be there too. Mom was a lifelong needleworker and after retirement made quilts.
Melissa B.
Bristol, CT
My mother, age 90, has been in an Alzheimer's unit for about 5 years now. For her 90th birthday, I made her a colorwash wall hanging that included mountains, trees, shrubs, a little log cabin and, of course, all the wonderful colorwash floral fabrics. Well, mom really connected with that. A life long sewing enthusiast, she was almost enchanted. She ran her fingers along each seam (and there were TONS of seams, and she talked about it (non-intelligible) but I was able to pick up on some of the intent and respond appropriately. It was so (sew) wonderful. I'm not sure whether she connected more with the textures of the appliques and seam or the colors. But it didn't matter. I cried for days afterward, but am so glad I made the effort. Next project: an Alzheimer's quilt to submit to Ami.
Mary F. Houston, TX
Mom died on March 4, 2005, after many years of suffering with Alzheimer's Disease. She was very frightened when she couldn't remember things and began looking to me to fill in the gaps for her when needed. Mom was fortunate to have been a part of the Stanford Hospital Veterans Hospital Alzheimer Research Project. The last 3 years of her life she required full time support. Our youngest son and his family moved in with Mom until moving 300 miles away, then my husband and I moved in and I quit my job to give her full time care. Mom was also a member of the Scrappers Quilters group meeting regularly each week. Quilting was very helpful in maintaining Mom's memory for shapes and stitching, as well as providing opportunities for friendships. Mom knew she had Alzheimer Disease and was very open about it, sharing with friends and family. She was funny and loving and generous. She was also very much loved. We miss her more than we ever imagined possible.
Judy H
San Jose, CA
Thank you for offering a space for those of us who can share their experience with such a thief of a disease.
In May 1996 I lost my mother to Alzheimer's, although, like others have mentioned, she had faded away mentally many years before. My father, bless his heart, took care of her, alone, until the last two weeks. He will be 89 yrs young this June, and still reminisces of their 53 year union.
Currently I offer my assistance and shoulder to lean on for a co-worker whose father is going through a rapid failing due to Alzheimer's.
I am working on a design to put into cloth my mother's first love - her garden and plants. This will be my contribution to the Alzheimer's Quilt auction.
Ginger W
Oxnard, CA
My lovely mother was born in 1909, she worked so hard as a young married farmer's wife. When her father was diagnosed with hardening of the arteries (really Alzheimer's) in 1960 she cared for him and her mother, even though she was a widow. She slowly drifted away from her family, at age 75, leaving behind a shell of the person she once was and passed on to her reward gently on New Years Day 1992. We remember her laughter, smile, hospitality to friends and family and know she is in a better place. Being human we miss her but realize it was what she really wanted. She had one sister who showed no signs of Alzheimer's.
Martha B.
Shelbyville, IN
My 91 year old uncle has brought his wife back into his home where he makes sure that she receives the best of care. She is also 91, having been diagnosed 10 years ago with Alzheimer's. He tried twice to find care for her in a facility but decided the best care was to be found at their home with the help of others. He says that the doctors tell him that there is nothing left in her but he knows better. He notices that when their son or a grandchild walks into a room, he watches her face and sees a light come on in her expression. He knows she is still in her body and he treats her as he always has, with love and tenderness. After over 65 years of marriage, their love is still alive.
Another relative, one of my elderly mother's favorite cousins told me that she took care of her husband, with Alzheimer's, for many years. When he finally passed on, she ended up in a mental hospital for over three years. She is fine now but the stress of his care took so much out of her. I have only the highest regard for those who care for their loved one during this very difficult time in their life. I am caregiver to my 88 year old mother and am so lucky that she only has dementia occasionally. I feel I am blessed to have her this long and we still can enjoy each others company. The caregivers to those with Alzheimer's deserve great rewards for the job they do.
Susan M
Cedar Park, TX
Our Mother's body passed away in October, 2005. The woman we knew was gone about two years before that. Early in the beginning of Alzheimer's, she knew she was having memory problems. "My memory just isn't any good anymore, you know?" And she'd look at us with such a puzzled look on her face. We saw the fear when she thought someone looked in her windows at night. We saw the anger when she told us we didn't believe anything she said anymore...that we argued with her all the time. We saw the empty eyes when she didn't recall our names anymore. We remember closing her household without her knowledge after she went to the nursing home. We get tears in our eyes when we took her to the nursing home and she had no memory of all the hours we had discussed this with her.
But we also saw the slow smile when she saw photos of our grandbabies even though their names couldn't be recalled. We felt the touch of her soft hand when she just needed to hold on to us. We try to remember that she was so blessed by a long life free of much physical pain...that she was a fighter and remained independent for so many years...that we were wanted and loved...that she and Dad loved each other faithfully...that she did the best she could.
We also try and deal with the realization that the same thing could happen to us and the implications to our own kids.
Marilyn
Russiaville, IN
I lost my dad two years ago to Pick's Disease - a really horrible form of Alzheimer-type dementias, which is highly genetic in nature. I spent a year or so sorting out the what-ifs, considering that worst case, I could have as few as 5 good years left.
The effect of that is actually positive — I now live like today could be my last. I'm more thankful than before, and less likely to have regrets. (OK, I wish the house was cleaner) The time I had to spend focusing on the disease was not conducive to artistic work — in fact, I wanted to keep those thoughts separate from quilting, my beloved stash, the music I love, etc. Even today, it's difficult to separate memories of my father from memories of my father without the use of his frontal and temporal lobes.
I've sorted it out the best I can - now I need to enjoy life without thinking about it. I have one brother - we could be having to think about it soon enough. I sincerely appreciate what you're doing.
Karen S.
Dallas, TX
What a coincidence to stumble across your web site today for the Alzheimer's cause. I have just completed the finishing touches for a quilt to be auctioned at our local Alzheimer Association. annual fund raiser.
I lost my Father to this disease three years ago in August. Unfortunately life and jobs did not keep us close physically and so it was my Mother who assumed the brunt of care for him. Each time I did visit you could see him slipping further a