October 30, 2012

Alzheimer's: My Fears Tempered by Reality

Anyone who visits this blog knows I have a huge fear of Alzheimer's disease (AD). It may well be an irrational fear, but I know most of my senior friends feel the same way. Some of my closest friends have had the thought I've often expressed: if I knew I had AD, I'd choose "self-deliverance" before putting my family and friends through the agony of the "long goodbye."

Fear of the Unknown Reduced
In spite of the worry, I haven't really known -- personally -- many families dealing with AD. But two different incidents last week brought the issue a little closer to home. Note: I've changed the names here. Note also that this is being written while holed up at home waiting to see what Sandy has in store for us, so I may ramble even more than usual.

  • Running an errand at our local Safeway/CVS shopping center last weekend, I met a former neighbor, Sally, whom I hadn't seen in several months. She told me her mother had died recently after a (typical) ten-year struggle with Alzheimer's. I knew Sally well enough to mention my fears and my thought that I'd opt out early in the game if I knew I had AD. She said she and her siblings had considered discussing this option with their mother in the first years of her AD, but they decided against it. After their mother died, the siblings recalled this early decision and were glad the family had gone "the full route." Each person felt that "the long goodbye" had been a meaningful experience.
  • Last week, I posted a reminiscence of Terry McGovern (daughter of Senator George McGovern) who died a few weeks ago. I knew Terry in the late 1970s when we were both struggling to stay sober. Ten years later, she froze to death in a snowbank outside a bar. After that post, I got an email from Harry, a close friend from those days. We shared two coincidences: the same sobriety date (March, 1978), and the same sponsor in our Alcoholics Anonymous recovery program. Harry reminded me that he and Terry had gone through the same 28-day alcoholism recovery program. Years later, working as an addiction counselor, Harry put Terry's brother on a plane, sending him to a  residential treatment program.
Harry's email mentioned that Fred, our AA sponsor, has been afflicted with Alzheimer's for the last few years. The next morning I called the phone number Harry had provided in the message. He was out, but I had a good long talk with Joan, Harry's wife, who was active in Al-Anon (the support group for family and friends of alcoholics). Joan, Harry and I had been part of an AA/Al-Anon group that met every Friday night for supper at a Chinese restaurant near Washington's Dupont Circle.
Joan reminded me of one of my favorite stunts. One Friday, I stopped at a sex toy shop near the restaurant and bought a package of X-rated fortune cookies. I got our usual waiter to substitute these for the traditional fortune cookies. Part of our supper ritual was to share our fortunes. I can still remember the stunned silence that evening as everyone cracked open their cookies. I finally turned to the guy next to me and innocently asked, "What does your fortune say?" He replied, "I think it says, 'If you don't like this fortune, you can shove it up your [expletive]'."
Sorry, I couldn't resist that digression. In any event, it was great catching up with Joan. She also gave me the phone number for Fred's wife, Alice. Fred and Alice met through AA and were both excellent role models for people coming into the program. Alice became a counselor for addicts in recovery. 
I immediately called Alice, and we also had a good chat. She told me that Fred had been diagnosed with AD about two and a half years ago, and that he was doing OK. More and more, he has trouble coming up with words and conversing at length. He doesn't drive anymore, but they still visit their kids who are scattered all over the country. (Alice had five from her former marriage and Fred had two from his.) Alice said it's not easy watching Fred's slow decline, but she feels she's learning more about what life and love are all about.
Then she called Fred in from the yard, where he'd been raking leaves. I wasn't sure I wanted to  have that conversation, but it was great. He still has his terrific sense of humor, including his wonderful ability to laugh at himself. He occasionally struggled to produce a word, just as I do. We both drew a blank when trying to remember the name of an old friend.  
Fred was very clear in explaining how much more he's learned about life -- and himself -- during these past two years living with AD. I know Fred, and his comments weren't BS. I was hearing an honest account from someone struggling with AD.
Four years ago, I dealt with another fear. Before my Parkinson's diagnosis, and as I was experiencing ailments I was sure signaled "the end" for me, I bought the book The Final Exit. I prepared to sell the house I love and move into a senior residence. Depressed, I was convinced my end was nigh. When I learned I (only) had PD, my life returned to being manageable and enjoyable.

Even after the Parkinson's diagnosis, I still harbored thoughts that I might "opt out" as the disease followed its inevitable downward progress and my quality of life deteriorated. I didn't know much about PD.

But now I know a lot more about the disease and I realize there's a lot I can do to enhance the quality of my life. I enjoy that challenge (most of the time).

And, thanks to my Parkinson's support group, I have friends who are sharing their "experience, strength, and hope" in battling this disease. Many of them are much further along the path of physical and mental decline than I am. Some of them are dealing with handicaps and difficulties that truly hamper the quality of their lives.  Four years ago, I would have said "If I have to deal with that, I'll opt out." But now I see these people dealing with their adversities with a sense of humor and zest for life.

I suspect -- as I learn to deal with realities instead of unknown fears -- that I'll probably will keep on keeping on. But I still want to have that other option available.

I remember a doctor (a friend, not one of my doctors) telling me he had a patient who was severely disabled and plagued by constant pain. Each year, the doctor give him a prescription for "a way out." Each year, the patient asked to have the prescription renewed.  Just knowing he had that option available made life more manageable.

Maybe that's the answer.

I wonder what others think.


Kathy said...

Such a thoughtful post, John. I will be thinking
about this again and again, I'm sure. And next Tuesday I will be voting in
favor of the "Death with Dignity" proposition in Massachusetts

John said...

Thanks, Kathy. I hadn't known about the Mass. proposition. I'll check it out. Your state has a good track record of doing good innovative things like Romneycare!

Vera said...

If someone were to decide to "Opt Out", then I think the most important considerations ( for me, at least) would be my family: the method you would use (no blowing your brains out and letting them find you); leaving all of your affairs in order; letting your family know why you are doing it and how much you loved them and that they are in no way responsible.

John said...

A friend sent me this link to a very good video summary of what the Massachusetts assisted-suicide proposition is all about. http://bit.ly/VCngPA. The point is made that the experience under similar laws in Oregon and Washington suggest that " more people may actually live longer and fight harder when they know they can end their lives but choose not to, rather than feeling that they are trapped and there is no way out. Ironically, by making assisted suicide possible, the law may actually be more empowering and prevent these suicides.