Changing the View of Alzheimer's Disease

13 Comments

I am so impressed with the candor and eloquence of this article. My mom has recently been diagnosed and we have been told to NOT mention the word "Alzheimer's" to my mom by her senior care doc who otherwise has been wonderful in every respect. This confuses me as to which approach would be best for my 90 year old mom. Mom thinks her dementia, AKA short term memory issue, is related the prednisone which she has been taking for 1 1/2 years to combat Giant Cell Ateritis which left her blind in her left eye. My sister and I are trying to make it as easy as possible for she and her 86 yr old husband to continue living in their independent living apartment. I don't know how much longer til step-dad wants to move her to assisted living. How do you know when the best or least traumatizing time is especially since she is in very mild stages and has only very brief moments where she doesn't seem "like herself"??

I so wish I had come across this site when my dad and I were taking care of my mom at home 24/7. It's the hardest yet most rewarding thing I have ever done in my life...I was able to make new memories I otherwise wouldn't have, many great, some too sad to mention. I know I always felt like I had won the lottery whenever I was able to make mom laugh..

Just finished watching Fade To Black. I've always been curious as to what people are feeling as they go through the various stages of this disease. I try to ask my mom what she is thinking, but she just doesn't understand what I'm asking and always tells me, 'Nothing'.

I will definitely be reading the blog mention and hope to connect on FB. Thank you very much.

Very well said...I don't think we need to much sympathy..We need to care on a positive and rewarding life......The good things...............My wife is on the initial.stage...Be happy with your partner.........

Thank you for providing a more positive view of the process of living with Alzheimer's. My husband and I have been living with his slow progression of Alzheimer's for 14 years. While I appreciate the concern and support that friends sometimes express, I am often struck by the "Oh, you poor thing!" view that people have of my role as caregiver. Certainly being a caregiver has its challenges and frustrations, and I am aware that there are much more difficult times ahead, but living with Alzheimer's on a daily basis for us has been just "like life" -- that is, it has its ups and its downs. Yes, there are the bad times, but there are the funny things that happen, and there are still lots of happy times. I know that the relatively slow progression of my husband's disease has allowed us more time to adjust to each new "loss" than many people have and has given me more time to problem-solve or figure out how we will cope with each change. But I also think we see living with Alzheimer's as a challenge rather than a death nell. Rising to that challenge, figuring out new ways of living day to day, can be a positive experience even within the overarching diagnosis of Alzheimer's.

I appreciate this article. The words "written off" resonate. This is why someone who truly and deeply loves the elder with the Alzheimer's is uniquely equipped to care for and love that elder, and yes, even to elicit love back sometimes, even if it is in fleeting ways.

I am a physician. When I treat my patents or talk to them, I don't just talk about their diseases and the treatments they would need. I spend time with them in the hospital-wards, if they need to be hospitalized for treatment.
I listen to their experience, and try to be a part of the journey that a person with a chronic disease, multiple medical problems or a terminally ill-patient, goes through.
I worked at a teaching hospital in Oslo, at one point of my life. I would spend hours sometimes with the sick children in the pediatric ward to share their world. I would draw cartoons, play funny games, just to make them laugh. Caring does not seem to me 'just providing the basic needs and medicines'.
We must all live the present moments too, and enjoy each day as much as we can. A wheel-chair bound patient can be brought to the garden or the balcony to see the blue sky, to feel the warmth of the sun, to smell the fragrance of the flowers, get the gentle breeze and the touch of the warm caring hands of someone, who has love and passion for even small creatures. Nature, I believe, works wonders. Till a person loses consciousness, the healing touch of nature and our earnest love and emotions can help a very sick person even live life with all the shortcomings and the calamity of a deadly disease.
Symptoms of focal cerebral disease may be prominent at an early stage of Alzheimer's Disease, particularly aphasia or the loss of topographical memory. The memory failure and decline in initiative and intellectual effectiveness of advancing dementia take sometime to develop----may take a few more years.The duration of the disease from onset to death is not very short. Once the patient realizes the progressive nature of the disease and that, it is almost incurable, he often emerges out a stronger individual and realizes his dreams---his urge to pen down his painful but extraordinarily brave encounter with a disabling disease.
To come to terms with the diagnosis of Alzheimer's Disease is very painful indeed------ both for the patient and the family. It is a degrading process, and I think, the patient has to live every moment, each day he gets to enjoy the company of friends, relatives, pets---who-so-ever he loves. He should rather consider each moment very precious, and should better do things which he desires utmost.That's what I would have done if I had Alzheimer's disease in the initial stage, till it would bring me to the final helpless state
The stories of all the patients, published here, had a huge impact on me. They all seem truly courageous; they teach us to struggle and live life with incapacitating diseases.
Thanks for posting the article. It would be of great help if you could send us the email of David; then we could possibly read his 'blog' and get to know more about the journey of this brave-heart.
I am deeply concerned about the patients suffering from Alzheimer's Disease.They are humans of varied personality, and now Alzheimer's Disease has changed their lives. Still I think, the disease should not be attached as tags. They are moving on; may not be in the main-stream of the society, and we cannot always go into the insight of their minds. I believe, they need care and love but not sympathy, They are suffering from some sort of ailment, and would now live life of a different kind-----very different from the ones that we live. They are brave persons; some of them have even chosen to share their experience with us. I respect their struggle and learn some good lessons from your heart-warming stories.
Your article "Fade to Blank : Life inside Alzheimer's" touched my heart and impressed me. Thanks for your care and concern!
I send my love and warm wishes to all of them------ the patients and their care-takers.
We would all die, some with failing memories and some with absolute memory-loss (complete dementia). I wish, I could share their present moments!
Rina B

Excellent. I have completed the first four sections and am taking it to heart. My own mother is not like the people in the discussion, but I am looking for insight into how she feels inside her mind. I know she is frightened to watch things slip away from her.

This article says it all..A credit to those who edited this story ,,,sure does put the disease in the right perspective...thank you ...

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I too was a caregiver, for my dear Mom, who passed September 2012. I first noticed a decline in her mental ability shortly after my Dad passed in 2005. Mom 'needed' me more, do her shopping, manage her checkbook, all the things Dad used to do. It then progressed to daily upkeep of the farm. There were days I needed to 'run' down to the farm 4 and 5 times a day because she either would call and desperately need something or she wouldn't answer the phone when I would check in on her. The first real fear for her life came one freezing cold winter day after a night of heavy snow. She was scheduled for a doctor's appointment that morning so I told her I would call to wake her at 5:00 AM. When I did call there wasn't any answer. After repeated calls to her without an answer, I jumped in the car and raced to her house. After reaching her home and fighting a huge snow drift in the drive which engulfed my car, I exited my car leaving half of it in the road and raced to the door of Mom's house. Unfortunately, neither my Dad nor my Mom had a penchant for keeping things alike. Prime example was the doors to the house. There was exactly 3 doors that one would enter to get to the main area of their house, unfortunately, all had a different key to unlock them. I finally reached the last door, only to remember that there was a hook and eye lock on the other side. Fortunately, there was glass above which did yield to my elbow. (If you have any say in your parent's household, make sure all the locked doors have the same key to unlock, it will make your life easier in case of an emergency!) I found Mom lying on the floor, completely out of her mind, babbling incoherently,. After spending a week in the hospital and 6 weeks in rehab, it was up to me to let Mom know she was never going back to the home she knew for the last 60 years of her life. It may have been wrong of me, but, I never told Mom of her 'diagnosis', You'd have to know my Mom, I knew she didn't want to know the truth, especially this one. She fought her battle with cancer twice and did it with such dignity and grace, I was so amazed and proud of this woman.. But Alzheimer's was different. She couldn't handle talking about it, though I knew that deep down inside, she knew. So, for the next two years Mom made our home hers. Reluctantly, I might add. She was never really happy here with my husband and me. I know it would have been easier for Mom if it would have just been her and I. She couldn't stand to share me. I was her whole life even though there were two other siblings. neither my sister, where ever she may be, or my brother never came to see Mom. It was just myself and my husband, who was a saint through all of this. After 2 years of watching Mom get more bitter with us every day, she blamed us for 'taking' her away from her home, and countless fights that Mom would pick with my husband, we had to make the gut wrenching decision to put her in assisted living. She couldn't be left alone nor would she let me leave her for 5 minutes. I tried to make her room as comfortable as her home was filling it with her antiques which she loved so. I would visit her daily, some days we would just sit and talk, other days I d take her shopping and then to lunch which made her so happy. She always hated going back to her 'room'. She loved it when I would bring her new clothes because of all the compliments which she would get wearing them. She was such a beautiful lady. Mom was there in assisted living for around a year before she started to progress to the point where I needed to cart a wheelchair everywhere we went. it took such a physical strain on my body and mind. I felt like the whole world was all on my shoulders. Her every need was up to me. Neither one of my siblings went to see her. My brother saw her maybe 5 times over the course of 4 years. They had no idea what was going on with her. How she was feeling or how scared I was, knowing what was going to happen to Mom. Her life became my life. I thought for her, and spoke for her. When I received the call to hurry in it broke my heart but I also was relived. I was able to spend the last 28 hours of Mom's life with her, alone. I sat on the floor at her bedside, holding her hand. She took her final breath with my husband and me be her side. Oh by the way, my brother did decide to show up for this. I know in my heart that I did all I could humanly do for her. I loved her so. I just don't know why I am so angry with her. I can't stop crying and I don't know if it's for her or for me. Until you have become a caregiver, you have no idea what one goes through. The emotional, mental and physical strain, let alone the monetary toll it takes, after all, who could charge a parent for room and board. Everyday I look around and see something that reminds me of Mom and I start to cry. I really miss her.. I pray that there is a cure for all the poor souls who have it. Alzheimer's is such an insidious disease and I am scared to death I will get it since it tends to be hereditary. I could never handle it with the same grace and dignity that my dear Mom did. I love you, Mom.