Sunday, October 23, 2011

Does the Pain of Alzheimer's Ever go Away?

It has been over thirty years since my mother was diagnosed with Alzheimer's. It has been 24 years since she died of the disease. I was seventeen when she was diagnosed, my book talks all about that struggle. But something is happening now around me now and it is very strange and very sad. It stirs a myriad of emotions for me. I was a junior in high school when my mother was diagnosed. There was no Internet, no Alzheimer's Association, no blogs, no Aricept, generally no awareness and no hoopla. We had "hardening of the arteries" and old people were "senile". That was about it. For awhile I had to sort of cover up to my friends, my mother acted weird, sort of crazy. It was most embarrassing and humiliating. It made me really enraged. Now some thirty years later I am getting phone calls from many old friend whom are now going through what I went through when I was 17. All the signs and symptoms of dementia. Nursing homes, sibling power plays. Meds, Aricept, Excelon, somehow now I am the expert having lived through all this so many years ago.
They turn to me for advice. Sadly I don't have the answers in the end. I can tell them all about the meds, all about my experience, but in the end for most of the dilemmas, there is no right answer. Should my mother go into a nursing home? She she keep living at home? Is it safe. What is the difference between dementia and Alzheimer's? For some questions I have very clear and informed answers.
With other dilemmas like the nursing home question I advise there is no correct or perfect answer, you have to try to do the best you can, of course you want to stay in the home as long as you can, but when is it not safe, who decides? Basically you do the best you can and no matter what it is going to hurt and it is going to hurt am lot.  
Two old friend from high school and college had parents die this year, once again in a perverse way I am the expert. Having gone through it when I was a kid, all I can do is listen. It was impossible for many friends to conceive how bad it felt for my father to die in high school or my mother to get Alzheimer's disease.
I wish people could have related to me then, they couldn't.
Now so many years later,, I am hit with a wave of sadness and anguish for them, I know it hurts for them at  50 years old as much as it did for me at 17 years old. I am filled with sorrow and a deep compassion for them, I want to fix it but I can't.  I listen and tell them that is how I was feeling back in high school, so long ago, it is a strange and surreal experience.
Do I feel indignant because none of these friends could really understand me back then like I understand them now? Not really, just a real deep sadness for them. They will go on, but it is never the same, loosing a parent to AD is as bad at 15 as it is at 50 or 70, it is always bad.
Then we can talk about the resilience of the human spirit. Makes us feel better. I like to refer to it as a survival instinct and that's about it. I am convinced that had my father not died when I was sixteen or my mother gotten Alzheimer's disease, I would have been a hell of a lot stronger as an adult and would have had a much easier time of it. And no I am not talking about getting through medical school and all the hateful stereotypical prejudices people have against doctors, I am talking about life. So call it resilience or survival instinct,. Nietzsche was wrong when he said "what does not kill  me makes me stronger", that is total BS. It greats on you and tears at your psychological and spiritual core, we are human beings not robots.
Alzheimer's is isolating and it always hurts, regardless of how long you have lived or how strong you think you are. I tell My Friends I know how they fell, I am so sorry, and I know they will get through it. I relate to their every scenario, every painful situation, and regardless of all the hoopla around Alzheimer's in 2011, the pain of what it is like for my old friends to now live with an Alzheimer's parent has not changed at all in thirty years, it is the same stuff, the same pain, I went through as a kid. It hurts them now as it hurt me then.I am sorry I had to go through it and I am so sorry people still have to go through  it., but you will make it..

1 comment:

Joseph Potocny said...

Dear Doc,

I guess the answer is no, but you learn to live with it and let it go bit by bit. Let your hatred of this disease go, I have and I have it.

God Bless & Keep You,
joe

Talking about the book with the Lake Superior wind....... a calm day