Musings of Nobody Important

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.

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.