Friday, March 9, 2012

25 years ago my mother died from Alzheimer's disease.

From my sister Madeline the other day on facebook_

"Today is March 6th. 25 years ago today, my mother left this earth and moved into heaven. She was 69 (5 days short of her 70th birthday) and I was 29. For almost the last 10 years of her life-she did not know who her children were. She lived in a very good nursing home with wonderful care. When she was diagnosed with Alzheimers Disease in 1980-no one had heard of it except my physician brothers and sister in law who was a medical geneticist. You learn how cruel life really can be when your parent asks you who you are. I tried to do everything I could to fight against Alzheimers-(became the youngest board member of the Alzehimer's Association, gave trainings and talks- everything physically possible to annihilate this killer disease. Now those words are a part of the American fabric.
I only found out something so special about her last year. When I was a teenager, I spent a total of two years on the adolescent medical floor at St Vincent Hospital in Erie. (My parents had met there when my father was an intern and my mother worked there and volunteered for decades there.) Last year, while perusing through her scrapbooks-I found that she had been the president of the Hospital Guild when they raised funds to open an adolescent unit. She never once mentioned that to me. Nor was it she that told me that she used to play the organ at the Warner theater in Erie to go along with the films in the 1930’s. So many things I can never ask her about.
Everyone felt her kindness and caring and how loved her life so much-as a wife,mother, daughter,musician, community volunteer and so many other roles. My greatest sadness in life was not to have parents around as an adult-how lucky people are that could have this kind of relationship-truly a gift. My luckiest gift was to have had the parents I did even though it was for a short time. Luckily, my parents named me after my sweet mother-We were the two Madges. God bless Madeline Mary Mentz Sivak-March 11, 1917-March 6, 1987.

Madeline Sivak "It was so heartwrenching painful to try to explain to people what was wrong with my mother-as if dealing with it at 20 wasnt hard enough-the insensitivty of most people was what now I consider amzaing seeing how AD is now-"TRENDY DISEASE". obviously we might have what you call bitter feelings-I just don't think we can ever get rid of them it was such a heartwrenching decade."

How I'm feeling about it all lately.....

"a quarter of a century of broken heartedness now and a piece of yourself and your very fabric, identity and self-worth ripped from you slowly and sadistically unrelenting-thats what AD in a parent does to you as a kid, (despite all the hope and positve spin BS on the disease), and then you cover the wound that never really heals and limp through life- Thats Alzheimers disease, and nobody really cares becouse it is too icky to talk about, until it happens to them. Then they want to know how you got through it, so you say "I tried to tell you, don't you see? This is why I am like I am" I so wish I had something to offer them. I promise Alzheimer's in a family member does not make you stronger- it weakens and chronically wounds you. Sorry"

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