The End Game: Thoughts on Terry Pratchett and Alzheimer's

Every other Thursday, we have Trish Vradenburg as our special guest blogger covering Alzheimer's issues. Trish is a playwright, author, television writer, and Alzheimer's Disease advocate. She and her husband George founded UsAgainstAlzheimer's with the goal of finding a cure or treatment for Alzheimer's by the year 2020. She brings her legendary humor and wit to the devastating realities of Alzheimer's, and we're excited to have her share with us here.

I read this article last week, which relates:

"Beloved science fiction and fantasy writer Terry Pratchett has terminal early-onset Alzheimer's. He's determined to have the option of choosing the time and place of his death, rather than enduring the potentially horrific drawn-out death that Alzheimer's sometimes brings. But Britain bans assisted suicide, and Pratchett is campaigning to have the law changed."

I have seen the ravages of Alzheimer's. Because we have lacked sufficient funds for research, we still appear to be years (hopefully not decades) away from a magic cure or way to avert this hideous killer. And make no mistake, Alzheimer's is hideous. It extinguishes a life and often, the lives of loved ones in a slow, painful, violent assault on your mind and being. So with no hope of help on today's, tomorrow's or next year's horizon, suicide seems like a reasonable way to end a life.

But there is still that slippery slope. If you are depressed - not an irrational reaction to being told you have a fatal disease - who's to say that time and science isn't on your side and that you won't come out of it with medication and be able to live out your life in a fairly decent way, giving yourself and your family the quality of life and closure that you need? But if you're dead, you're dead. No reconsideration, no second chance.  Or...an insurance company can determine it is time...Or...a relative can show that you are no longer capable to live on your own and are so far gone and, after all, there was no DNR order in place so...

These are always possible. But it seems to me that, in a free society, a person should have the right to determine what she does with her life, how she lives it, and when it is intolerable, how she ends it. Abuses can happen, but ban the abuses not the freedom to choose.

Frankly, I don't know how to deal with the "what ifs" in life. I used to think that if I took the time to buckle my seatbelt, it would slow me down by five seconds. But what if in those five seconds I drive a mile, stop at a red light and then am seriously rear-ended by another car? I would have made that light and not been rear-ended had I not used up five seconds to buckle my seat belt? Is this a case for not having to use a seatbelt? I think not. It is more of a case for "life happens."

Near the end of my Mom's Alzheimer's, I moved to Los Angeles from New Jersey. I flew back often. My Dad was healthy and devoted, visiting her at the nursing home most days.  But he was also drained and physically wasting away. Whatever was happening behind the eyes of my Mom, a woman who had been a determined warrior, I didn't know; I hadn't seen a glimmer there for years.

Five months after I left, I received a call from the hospital saying my Mom had been admitted to the ER with a 105-degree temperature. I started to pack when a doctor called and announced proudly, "I have brought your mother back." My mind flooded with the relentless downhill march this disease had forced upon her - the paranoia, the fear, the indignities, the vanishing into nothingness. "Brought her back to what?" I asked. "It's time. Let her go," I implored, as much to myself as to him. Two hours later she was gone. Though, in truth, she had been gone for years.

But did I order her death?  Would it have just happened?  The staff assured me that it would have. I still don't know. My Mom was dead emotionally and mentally for four years. The physical death was no more than letting go of the shell that encased the irrelevant part of whom she was. I know my Mom would have made the same decision for herself.

Yet still, I wonder...

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