Saturday, March 24, 2007

Alzheimer's Disease

When this book was published in 2001, I read it as part of the Book Circulation Group. It is a fascinating book about a study, the Nun Study, undertaken by epidemiologist David Snowden. For fifteen years he researched a group of 678 elderly nuns, 75 to 104 years old, who graciously allowed him to study them for the occurrence of Alzheimer's disease and other diseases of aging. These remarkable women also gave him permission for their brains to be autopsied on their deaths and he made some very interesting discoveries. Some, who exhibited signs of Alzheimer's disease, showed few plaques or tangles on autopsy, while others, who had many plaques and tangles, exhibited no signs of the disease. Now the important thing about this group of women was the uniformity of the life they led and of their level of education, since they all had been teachers. Dr Snowden developed a wonderful relationship with these nuns and their stories are inspirational. I can't recommend this book too highly. It is a delight to read.

But, you say, what is your interest in Alzheimer's disease? Well for the past twenty years I have acted as "next of kin" for a widower friend who has no relatives at all. His wife was one of my best friends and when she died of a brain tumour he said, sadly, to me, "I have no one's name to put in my wallet." I told him that he was to put my name there. So, besides making him part of our family, over the years I've been called several times to the emergency room or to the hospital when he has been there for one reason or another and I have been his "next of kin".

About seven years ago, although he had been concealing it very well, it was obvious that he was having severe memory problems and finally he was diagnosed with Alzheimer's disease. Legal documents were drawn up and I became his "next of kin" or representative, with power over his bank accounts and health and welfare decisions, and with a trust company handling his major finances. I also promised that I would keep him at home as long as possible. As he declined, I hired caregivers part time, then full time and basically, for four years, I was running two households. Finally, after a stint in hospital for a medical condition, it was obvious that he would receive more stimulation and company and be better cared for in a facility. So I found a very exclusive private nursing home, with a wonderful program for the cognitively impaired and he transitioned there easily and lived there quite happily for almost two years. Unfortunately he broke his hip and was taken to the hospital, where, after surgery, he was compelled to use a wheelchair. The private home, an intermediate care facility, could not take him back since he could not weight bear and I transferred him to the extended care facility at the hospital where I worked for so many years.

This has been the saddest journey for me. To see this man, who was a professor of Pharmacy at the university, decline so completely over these past seven years has been tragic. His world is so narrow now: he can't read or watch TV. He no longer has any interest in music, which was his greatest pleasure. He spends his days propelling himself around in his wheelchair, using his feet. He is 83 years of age but, although he has arthritis, all his vital organs function extremely well for his age. Although there is no physical reason why he cannot walk, he has forgotten how and now he has become too weak to do so. How soon is he going to forget how to eat, how to swallow? He has to be fed, for he is no longer able to do this for himself.

I am very fortunate in that I still know people at the hospital from my working days there, so they go the extra mile for him. Although he normally has the sweetest disposition, he is very combative with the aides when they do his personal care and he also swears at them a lot during this process. Fortunately they are very understanding. The other day, when I went to see him, he wheeled right past me, even when I spoke to him. He doesn't know who I am. This was the first time that this had happened. He has long forgotten my name, although we have been friends for 46 years. But he always knew that he knew me and gave me a big smile. Funnily enough, he is still relatively articulate, although what he says makes no sense.

Every time I can't remember something, I worry that maybe I am developing Alzheimer's disease and it makes me afraid. People toss the phrase around jokingly, "I must be getting Alzheimer's." But if you have a close personal relationship with anyone who has it, you do not joke about it. You have seen first hand the devastation that this disease causes and it is no joking matter.

I said to my husband the other day, if I get Alzheimer's I'm not going to be like my friend, with a pleasant disposition on the whole. I'm going to be a cranky, cantankerous, difficult patient. You know, I fear that might be true and that nobody will want to care for me.

Cathy at Cathy's Rants and Ramblin's lost her mother to Alzheimer's five years ago and has posted a round on everything about Alzheimer's disease.

I hope that someday this disease will be conquered for, in truth, it is one that you would not wish on your worst enemy.

18 comments:

ipanema said...

I have the same fear everytime I lost focus or simply can't remember what I'm about to say. It's dangerous if it's a sign of Alzheimers.

Is it true that if one had been through general anaestheia, one can be forgetful? I don't know if this is a misconception or whatever. But I hope this is not tied up to having Alzheimers.

Welshcakes Limoncello said...

A wonderful post, jmb. I will definitely order the book. The nuns, as you say, must have been extraordinary women. Alzheimer's and related illnesses are not something to joke about, I agree, and so many people do not know what it is like to watch someone go through it. It is the cruellest thing and if countries would spend only a fraction of what they spend on defence in searching for a cure they would find one. The saddest and most difficult part, I found, is learning that the sufferer is probably quite happy in their "little world" but you, as the carer they no longer know, are shut out of it. It is a terrible, painful process. You do know, though, that you have done everything you could for your friend and he is very lucky to have you. All good wishes to you both from Sicily, my friend.

jmb said...

Hi ipanema,
Fortunately you are too young to have to worry about Alzheimer's, although early onset Alzheimer's exists.
Also the loss of your husband so recently I'm sure has affected your concentration. Time will eventually heal this although we all suffer from this too. Usually trying to handle too many things at once.
I'm not sure about general anaesthesia and memory loss, but I would suspect that it would only be short term memory loss. Nothing to do with Alzheimer's
Regards
jmb

jmb said...

Hi WCLC,
Thanks. I'm sure they are working to find a cure, but first of all you have to understand what causes this disease. Looking back it is obvious that his mother had the same problem, but she died in the late sixties before Alzheimer's was a general diagnosis.
What you say about being happy in their own little world is quite true for my friend. He used to display general anxiety, even in his own home, which he said was not his at the end. But this seems to have disappeared and now only when he is handled for personal care is he difficult.
The sad part is he is quite wealthy but none of these private homes here want to deal with extended care patients so he had to go into the public system. The care is good but he shares a very large room with two others, although that doesn't bother him at all.
Regards
jmb

Lee said...

It's such a sad, sad thing. I would hope that if this happens to me by some little flicker of sensibility I would euthanize myself. I know this also is a very debatable issue, but I do not want to become a vegetable...that is not a life...it is an existence only. I can see absolutely no purpose in being like that. I'm very firm about this, about myself.

Your friend has been very lucky to have had you in his life. I empathise with you in your pain watching him in this sad state. It's not fair...I, too, hope a cure will come soon.

jmb said...

Hi Lee,
Certainly it is not a life, but merely an existence. Luckily he is looked after fairly well. The people who do this work are saints, as far as I'm concerned.
Regards
jmb

Cathy said...

jmb, I also have this fear every day..This is a beautiful story you have told. I can think of no sadder illness than Alzheimer's disease.

Reading this makes me wonder what in the world, would have happened to your friend, if you hadn't stepped up and took the responsibility.

You took on a hugh responsibility when you did this. There are not many people, who are not family members, who would do what you did. In fact, there are many family members who wouldn't do it. He is very lucky to have you.

Also, I had not heard of this book before and now I want to buy it. It sounds very interesting.

Thanks for the link and I will be using your link to this story as well.

jmb said...

Hi Cathy,
Thanks for the link. I'm looking forward to your post.
The book is great, the nuns are delightful. One factoid I remember from the book was that if you make it to 86 without Alzheimer's, you are unlikely to develop it. Only 15 years to go.
Regards
jmb

Dr Michelle Tempest said...

That is a great post and I'm going to have to get a copy of that book! Michelle

jmb said...

Hi Michelle,
It is a great book. The interaction between the so-called detached epidemiologist and the old nuns is delightful. They gave each other so much.
Regards
jmb

Ellee said...

Hi, Just visiting from Michelle's I think I will order this book too. What a fascinating way of writing about this subject.

jmb said...

Hi Ellee,
I think this book is not only delightful but a very important study.
Regards
jmb

ipanema said...

Thank you jmb. No, it's got nothing to do with my loss. It dates back to 8 years ago. But if there's no connection, I'm relieved.

jmb said...

Ipanema why don't you discuss this with your doctor? I can see that you are concerned about it. I did cruise around the internet before replying that I thought any memory loss from anaesthesia would probably be short term which was what I found. However, there are so many different types of anaesthetic that one shouldn't generalize.
That said, often we don't want to know specific information and so don't ask the person who could best give it to us. This I totally understand.
Take care
jmb

Liz said...

It is a scary thing. And we all get forgetful - particularly with the busy lives we lead - and there is a temptation to say jokingly that it's the first sign. It is no joking matter though for the carer, the person on the outisde who has to look on.

My internet connection is slow at teh moment so I'll say here that I loved the photos of the market stalls - especially the cakes and pastries!

jmb said...

Hi Liz,
We do all get forgetful due to our busy lives and I think the use of that joking remark is like whistling in the dark. If we say it out loud, it won't be true. That's my theory and I'm sticking to it.
Regards
jmb

Moof said...

My mother died of Alzheimers. This May will be the 10th anniversary of her death.

Watching her decline was a nightmare.

Each time I lose a word, or fail to remember an event that others insist I witnessed, I worry that I may be following in her steps.

This was a great post! Thank you.

jmb said...

Hi Moof,
I'm sorry to hear about your mother. I'm sure you do worry about it yourself, with a close relative involved. Even though I'm not related to this man, to have seen what has happened has affected me greatly and so I worry too.
Good luck with your own health issues.
Regards
jmb