July 1, 2013

A Pause in the Alaska Photo Journal as I Contemplate My Final Exit

My computer problems will soon be fixed, and the Alaska cruise photo journal should resume tomorrow. So bear with me while I report on my Sunday morning "Joy of Quiet" hour.

When I make a bathroom visit around 4am, I stay up for about an hour. I used to call this break my meditation time, but I think of it now as my "Joy of Quiet" hour. I spend most of the time just letting my mind wander, and I do some easy seated exercises for my hands, fingers, back, and legs. It's my favorite time of day.

On these hot, humid DC summertime days, I take this quiet time on my back porch -- enjoying the relative cool and watching the dawn break. I took the picture above around 6am, after I'd spent more than an hour thinking about several faint signs that I might be adding Alzheimer's to my list of afflictions. I wondered whether such a diagnosis might prompt me to "opt out." I was in a very serene, happy mood when I took the photo and went back to bed for a few more hours.

Don't be concerned. I have a tendency to overreact, to make unwarranted conclusions. One of my nearest and dearest frequently refers to me as a "drama queen."

Contemplating Alzheimer's
I'm at ease living with my known incurable maladies: Parkinson's and prostate cancer. My biggest fear is Alzheimer's. Perhaps if I had to deal with Alzheimer's as a real affliction, not just a fear, it might not seem so scary.

Several recent "incidents" sparked my Sunday morning ruminations. My family and friends consider me a very (perhaps obsessively) organized person. Last week, I sent out e-invites for an annual event at my house to watch the neighborhood Fourth of July parade. We always gather at 10:30 in the morning and walk down to MacArthur Boulevard to watch the parade. After, we return to the house for a potluck lunch. My daughter told me I'd shown 8pm on the the e-vite. Then, when I sent out a "correction," I showed the start time as 10:30pm. Invitees didn't know what to think!

I spent time last week finalizing the itinerary and booking hotels for the three-week trip my son, his companion and I will take to Europe later this month. (After that, we'll join rest of the family in Venice on August 10 for a cruise to Barcelona.) While making arrangements, I used the wrong dates several times.

I joked to others that both snafus were signs of senility. But a voice inside whispered "early warnings of Alzheimer's."

I'm 84. In people over 85, about half have Alzheimer's. So, I'm not crazy to think about hearing that diagnosis down the road.

Contemplating Death and Dying
When the "You've got Alzheimer's!" notion surfaced Sunday morning, I was completely at ease thinking about my eventual death. The life expectancy for someone my age is about six years, which would take me to 90. Were it not for the prostate cancer and Parkinson's, I bet I'd exceed the actuarial average, since I've been in good health most of my life.

In any event, my demise is on the near -- not distant -- horizon. One of the things I'd like to do with this blog is encourage others to talk openly and comfortably about death and dying.

I've been reading David Hilfiker's terrific blog "Watching the Lights Go Out." David is a Washington, DC doctor/writer/intellectual who was diagnosed last year with "progressive cognitive decline" (Alzheimer's) and now writes honestly and elegantly about his experience dealing with the disease. So far, he considers his life better and happier than it was before the diagnosis.

I've watched friends die of AIDS, cancer, ALS, and Parkinson's. I've been impressed by the courage, grace, and humor these friends have shown as their illnesses claimed them. But several friends spent months -- even years -- being kept "alive" even though the quality of their lives was near zero.

Dying from Alzheimer's -- in an odd way -- might seem an "easier" way to go; pain is minimal and disability often sets in slowly, and -- in the disease's later stages, anyway -- without the sufferer's awareness. Still, more than any other affliction, it makes me think suicide. Here's the main reason: I don't want to put my family and friends through the final stages of this "long goodbye." And I don't just mean emotionally. My son and daughter, my three grandchildren, and my two great grandchildren (with a third on the way) are dealing with a much tougher job environment. I want them to have the benefit of what my good fortune has brought me in the way of financial success. I don't want those resources squandered by keeping me "alive" in a vegetative state.

1 comment:

John M said...

My mom had Alzheimer's: She lived with the disease for around 5 years, and then died of a heart attack. One of the many things I learned was how to differentiate between Alzheimer's and "garden variety" dementias, most of which are far less severe and debilitating than Alzheimer's and progress far more slowly. This is such a thoughtful, balanced piece, John, and although I'm much in alignment with how you're thinking about all this, I urge you not to jump to conclusions. And even with Alzheimer's: I think the last couple of years of my mom's life, in the throes of the disease, were among her happiest.