April 28, 2011

Let's talk about my biggest fear -- dementia

I'm not overly concerned about living with prostate cancer and Parkinson's. I had the radical prostatectomy in January, 1995.  Post-operation PSA readings showed that some cancer cells remain. The  PSA readings have been growing very slowly over the past 16 years.  I hardly ever even think about the cancer.

My Parkinson's was diagnosed in September 2009, although I now realize I had PD years earlier.  But thus far it too seems to be progressing slowly.  As I've commented many times, the diagnosis has given my life a challenge and a focus that has contributed to making this the best and most rewarding time of my life.

So, as is often the case, the known demons are manageable and don't cause any panic.  But the unknown -- will I come down with dementia? -- is what scares me.

I've seen others who are pretty far down the road of Parkinson's progression and I generally find them inspiring, not frightening, in their efforts to make the best of the cards they have been dealt.

I've seen others who are well into dementia and I want no part of it. I don't want to live robbed of my personality and my ability to interact with others and to function effectively. I don't want to put my family through what Nancy Reagan, for example, had to deal with.  And I would rather my money went to educate my grandchildren and great-grandchildren than to the care and upkeep of my unresponsive body.

For years I've been concerned about some quirks in my memory.  Even in my 40's and 50's, I'd hear others discuss in detail a movie I'd recently seen or a book I'd read and I'd have little recollection of it. I've never been good at remembering names or personal narratives.  As I've aged, of course, the memory problems have worsened.

I'm aware that some of my memory lapses are attention-deficit related. And my internist and other medical authorities assure me that memory defects do not automatically signal impending dementia.  Still I worry.

One way of dealing with this worry is to become better informed about dementia.  So I've done some research on it, which I'll share in upcoming posts.

Meanwhile, what about you?  Do you have similar dementia fears? How do you deal with them?  What are your questions about dementia?


Daniel said...

As a baby-boomer, I've seen several friends struggle with parents' dementia. And I've been awed by the strength and courage my friends have shown during these heartbreaking long good-byes. It's hard for me to imagine dealing with anything more difficult on this earth.

Gloria said...

Amen, John. I'm eager to see the research you'll share.

Dirty Butter said...

Both my husband and I have parents who died of Alzheimer's or Parkinson's Dementia, so YES - you are not alone in these fears. My memory is terrible, both short term and long term. My Neurologist assures me that it's from the meds I take for my Movement Disorder, plus other medical issues I have. But no matter how much assurance I get, I still have the memories of our parents as we took care of them.

Anna said...

I also have fears of dementia. I know that worrying about it can't help and will only make me anxious. I find that if I focus on the day at hand, that's enough. I look for opportunities to bring joy and minister to the needs of others. I know it sounds simplistic but being a giver brings me joy and warms my world. I can't change what tomorrow may bring, but I can seize the day and make it a better place for those who cross my path!

John Schappi said...

Anna, I feel the same and couldn't have said it any better. When we focus on helping others we help ourselves get away from non-productive and anxiety-provoking self-absorption --John.

John Schappi said...

I had the opposite experience and I've often said I'd like to go the way my Dad did. He was in seeming good health and played golf every day when the Ithaca weather permitted. One afternoon my brother dropped by the house to see him and found him lying beside a lawn chair and an open book. Of course, he was 83 at the time and I'll be 82 next month so maybe I could postpone this exit a bit longer. -- John