Glen Campbell wrote this lyric after his diagnosis with Alzheimer’s:
I’m still here, but yet I’m gone
I don’t play guitar or sing my songs.
They never defined who I am
The man that loves you ’til the end.
You’re the last person I will love
You’re the last face I will recall
And best of all, I’m not gonna miss you.
Not gonna miss you.*
Read between the lines. He knew that dementia, including Alzheimer’s, is never quick. And that needs your attention, for yourself or for your loved one.
In his book, Old Age: A Beginner’s Guide, Michael Kinsley wrote that life is a terminal illness. But life is not a diagnosis. When you’re slammed with words like “Alzheimer’s,” “Parkinson’s,” Lewy Body,” et al., you are in a different ballgame. A long one. Life lasts . . . . how long?
In contrast, the ten types of Alzheimer’s are a sentence to finite years. It’s like a judge saying “Five to eight years, with no time off for good behavior.”
So what did you tell your family about Those Circumstances? Or what did your loved one tell you?
Probably nothing. “Turn off the machine” and “Pull the plug” and similar trite expressions don’t begin to express how you’d want your family to deal with you. Similarly, the direction to “Do everything” is meaningless.
The pap in the old-style living wills – give me water, give me pain relief, etc., — don’t really answer anything about how you should be treated if you’re suffering with dementia.
So you need a different kind of document.
And you need to fill it out while you still can.
Meaning: If you’re reading this, you know you can. But when you’re simply holding this page, not knowing what’s on it, then you can’t. At least you won’t know at that time that you can’t. (Yes, it’s very depressing.)
In addition, what’s your choice of care at what level? A study by Washington University in St. Louis arbitrarily divided phases of Alzheimer’s into three phases: mild dementia, moderate dementia, and deep dementia.
We’d add a fourth, to be at the beginning of the list: when you know the diagnosis but can still act, can still think about consequences, can still sign. (And you’re welcome to a free copy of “The Dementia Directive” we’ve created.)
Think about it. If you are is in “mild dementia,” what would you want the medical care to be if you’ve lost the ability to remember recent events in your life? What if routine tasks like cooking had become difficult? What if you shouldn’t be driving?
So at this stage of dementia, what level of medical care would you want for yourself? Do everything anyway? Do this but not that? As noted above, pulling the plug means nothing.
You’d probably want different medical treatment if you were in deep dementia. Meaning: You don’t recognize loved ones at all. You’re disruptive at night. During the day, you are sometimes totally passive, but at other times, angry, agitated, even violent. You need round-the-clock help with all daily activities (and you know what “all” means, right?).
So what would procedure would you consent to if you suddenly needed an unrelated surgery? How aggressive should your emergency treatment be for a new medical problem?
That’s why you need the new form, and now. While you (or your loved one) can still fill it out.
*From the Album “I’ll Be Me”; Writers: Julian Raymond, Glen Campbell. © 2014 Big Machine Records, LLC.