Thursday, March 13, 2008

A Sad Day

I've written before about my personal experience with Alzheimer's Disease, as I am responsible for the care of an elderly male friend who suffers from this awful disease. I act as his "next of kin" for he has no living relatives and I have a legal representation document with defined powers, including making health decisions on his behalf.

For the past eight years I have been overseeing his total care, firstly hiring caregivers and running his home as well as mine. About three years ago I moved him to a wonderful private care home with a special floor for people with cognitive impairment where he lived quite happily until eighteen months ago when he broke his hip. At that point I was forced to move him to an extended care facility for he could no longer walk and needed to use a wheelchair. Fortunately I was able to place him in the extended care pavilion of the hospital where I worked for eighteen years and I know many of the people who work there still, although I have been retired for years.

Once a year there is a patient care conference where all the health care professionals gather to discuss issues and treatment modifications to the patient's care. Family members are included and yesterday I attended the second one for my friend who is now 84 years old.

There were twelve people at the conference including myself and I knew the physician, pharmacist and social worker very well from my working days. However the physiotherapist occupational therapist, dietitian and some of the others were new. Each person gave a report from their point of view on my friend's current condition which has deteriorated in the past year and I was able ask questions. The biggest issue is swallowing and consequently his nutritional needs and his weight. At 6 foot 2 inches he weighs in at 61 kg. There is little flesh on him, just skin and bone. He could blow away like a feather in the wind.

Because of the swallowing issues which are common in advanced Alzheimer's Disease, he developed a mild case of aspiration pneumonia last Fall when I had to make a decision about treatment. In consultation with his physician, we decided that he would be treated with oral antibiotics only. But it did the trick and he perked right up again.

Being the forthright person that I am, I told them that I am very concerned that he is slowly starving to death although they assure me this is not so. His basic nutritional needs are being met. Well more like his minimal nutritional needs I would say. It seems I will face the day soon when a feeding tube could be considered. In fact I raised the question today and asked whether this is considered extraordinary means. I have been my friend's "next of kin" for more than twenty years, since his wife died. Even in the early stages of AD he was adamant that he did not want extraordinary means used to keep him alive. I was not given an definitive answer to this question, so I guess I'll have to do some research into it and be prepared to deal with it should it arise.

After the conference I went looking for my friend and found him in his wheelchair in the corridor, wheeling himself along with his feet. He is still a good looking old fellow, with a full head of the most wonderful grey hair, now below his ears and curling a little at the ends. When I spoke to him his face lit up, although he has no idea who I am and he really can't speak now, just makes noises. He has the attention span of a flea, so after a moment he wheeled off leaving me standing there. I watched him go, thinking about the university professor of Pharmacy that he once had been and whom I met at the Faculty 46 years ago. Luckily he has never lost his wonderful disposition, as so many do with this terrible disease, and for that I am very grateful because the caregivers all like him and he is relatively easy to take care of.

Yes indeed, a very sad day for me. For today I was forced to face again the reality of this disease and to think about how it has devastated my friend's life. To realize how much he has deteriorated in this past year and how I might be called upon to make some very tough decisions soon. This is a disease you would not wish on your worst enemy and every time I can't remember something simple I wonder if this will be in my future.

If you made it to the end of this post, be assured that normal programming will resume next time.


Janice Thomson said...

Ah Jmb...I cannot imagine how difficult this must be for you. That is truly one of the most horrid diseases - the victims are really the loving family and friends. Let us hope and pray that a cure for this will be found soon. How wonderful he has such a staunch, loyal, compassionate and loving friend like yourself. Sleep well my friend knowing you have done all you can do to make this man's last years as comfortable as possible.

Welshcakes Limoncello said...

Oh, jmb, I am so sorry that you have had such a sad day and I do understand, as you know. It is the cruellest disease because you cannot even discuss it with the person. I don't know if a feeding tube is "extraordinary means" either and I do know what a very hard decision you may have to make in the future. My thoughts are with you both.

Josie said...

JMB, this is so sad. I have never known anyone with Alzheimer's, but I have witnessed people I love being in the advanced stage of a terminal illness. I agree with the laws in Holland, where people can make their own choices and decisions about end of life. Of course, in Canada, that is not a decision we can make, nor can our caregivers. But I have a feeling that whatever decisions you make about your wonderful friend, they will be loving, caring decisions. You should have a clear conscience about that.

Vijay said...

I have no words of comfort to offer. Just wanted to let you know that you and your friend will be in my thoughts.

rlbates said...

Vijay said exactly what I wanted to say. Take care, JMB.

sally in norfolk said...

A horrid thing for you to have to deal with.. :-(

Carver said...

Dear JMB, I am deeply sorry to read this. Alzheimers is such an awful disease. What struck me reading this post is how contrary to the name of your blog, you are someone who is very important. Family members often have trouble dealing with this disease and care decisions. For a friend to take such a huge responsibility as you have done, for so many years, shows me what a remarkable and important person you are. As ever, Carver

Ian Lidster said...

Alzheimer's has to be one of the cruelest of indignities. A very moving testament to your friend and I only pray that it is something I'll be blessed enough to escape.
As Bette Davis said: "Old age isn't for sissies."

Crushed by Ingsoc said...

My father always says one of the worst experiences of his life was seeing his father before he died. He was so pumped full of Morphine, his last words were 'Who the Bloody Hell are you?'.

It must be very dispiriting watching a shell that you recognise, the lights of which are gone.

leslie said...

I feel for you, jmb. My mother had Alzheimers and except for a couple of months in a care facility, my Dad cared for her at home until the end came, peacefully thank God. Then my Dad lived on his own for about 4 years until he was hit with 2 major strokes leaving him with vascular dementia. We had to place him then - and chose Delta View where Mom had been, and which is now even better! They were wonderful, we had quarterly meetings, and after he broke his hip last Sept, he only lived 10 more days. It is a sad part of life to care for someone who had a quick mind in their earlier years and to have to watch their cognitive decline. I feel that you are a very kind and loving person to have taken this on. And I also feel that he knows it's you, if only for a moment, because as you said he lit up for a bit. My heart is with you as you struggle with this issue.

Vic, the Cariboo Ponderer said...

I can't begin to know anything about how difficult this must be for you. I have known two people with this disease but not yet to the extent of your friend. You must feel your responsibility very heavily, but like Carver said this makes you certainly not somebody who is 'Nobody Important'.

jmb said...

Hi Janice,
It's easier physically now than it was when I was trying to keep him at home. But that became too difficult. I guess I'll know what to do when the time comes.

Hi Welshcakes,
I think it becoming clearer to me, talking to others who have been through it with relatives, that I will opt not to do it. The choice may not be offered of course.

Hi Josie,
I hope I can make the right decision. I have done my best, it's true.

Hi Vijay,
Thanks for your thoughts, my friends are a good support when I need to discuss these things.

Hi Ramona,
Thanks, most times I just do it and don't think about it too much. Yesterday was an eye-opener.

Hi Sally,
It has not been easy and I do feel for him. But he doesn't seem to care now so that is good.

Hi Carver,
AD is one of the worst diseases, although apart from the physical issues in a way we are past the worst. Perhaps it is easier for me because I am not a family member. I do it because he has no one else.

Hi Ian,
It is an awful disease and as I said one you would not wish on your worst enemy. Old age is a bummer for sure.

Hi Crushed,
I think it would be worse to watch someone you love die in pain. In hospital pharmacy we dealt all the time with pain situations and supplying IV morphine continuous infusions. Some people suffered for a long time and often I would come to work and hope some poor person had died while I was off shift.

Hi Leslie,
You were lucky to find a great care place for your parents when the time came. I have heard there is a good place in Delta.
It was really awful to watch him in the beginning when he knew but he did not accept it. I was really frustrated trying to get him to accept caregivers and had to do it very gradually, going from a couple of times a week to every day.

Hi Vic Grace,
I do take this responsibility seriously but now he is in very good care and he does not seem to mind anything anymore. He is quite mellow although he does have very bad arthritis. But even that does not seem to bother him as much as it used to.

Thanks to each of you for visiting and commenting.

Lone Grey Squirrel said...

You took on a great responsibility and it should be said that that you have handled it well with love and perseverance. My sister-in-laws mother also suffered from this disease for more than 15 years. She just passed away last weekend after a stroke. Although it was difficult to see her deteriorate, for the most part she enjoyed her daily life and remained cheerful. If you brought her flowers, she would light up with joy every other minute and ask if it was for her.

However, I wonder what life would be like if she had to "awaken" every minute, confused, scared and wondering why there was a tube in her throat. I really don't have a definite answer to your question but this thought comes to mind.

Tai said...

You are both fortunate that you have each other, he sounds like a fine person.
And I'm terribly sorry that the weight of this is so heavy, but as everyone has said so well, you are a compassionate and caring person who will make the best possible decisions to help him.

Ellee Seymour said...

What a tragic story in a civilised society. I know of research companies in Cambridge who are trying to find a cure and produce new medication for this, let's hope they are successful.

jmb said...


I am sorry that this disease has affected your immediate family too. I too think that a feeding tube would be a huge confusion, assuming he could even swallow it and am thinking he would probably pull it out anyway.

Hi Tai,
I am happy to do this for this man because he has no one else. So far I have no regrets about how I have handled the situation.

Hi Ellee,
Let us indeed hope that if not a cure an effective treatment will be found for this terrible disease.

Thanks to everyone for visiting and commenting.

JC said...

I just wish you strength and faith when difficulties arise. God bless you.

Anonymous said...

How very tragic for you and him, both. I don't envy you the decisions. I hope that you have a compassionate support group around to give you strength.

Liz said...

jmb, he is fortunate in that he has you and good care. I pray that God will grant you wisdom when you need to make decisions, and peace to live with them.

Chrysalis Angel said...

It is such a horrible disease. My grandmother passed away from this, but not before it ravaged her mind leaving her in a world only she knew.
This post brought tears to my eyes.

Ruthie said...

JMB, that is heartbreaking... I'm sorry you have such a heavy responsibility to bear, and I'm sorrier still for your friend.