Today’s column regards a tough topic: Death. Specifically, it has to do, more or less, with “Death with Dignity,” or what many of us might simply refer to as “assisted suicide.”
And it has to do with Alzheimer’s, or anything that might look a lot like it.
There are any number of very good reasons why a reader might not care to be drawn into this kind of discussion, be it religious, philosophical, a matter of being in this kind of situation right now, a matter of having been in this kind of situation very recently and the wounds are just too fresh or maybe because it’s too darn dark.
If any of those ring a bell for you, please respect yourself enough to stop here and go be about your life, with our collective blessing — it’s called “self-care.” For the rest of us, here we go.
Sometime back, I received this e-mail from a reader:
“Hello Mark … I have a question on a tough topic that I think may be in the minds of more people than one would imagine.
“My husband and I both have parents who have been severely affected by Alzheimer’s, both as victims of the disease and as caregivers who worked themselves to exhaustion and hospitalization. We really hope that we’re lucky enough to escape it ourselves, but the odds probably aren’t that great.
“After seeing our parent’s lives torn apart, we have both come to the conclusion that neither of us wants to live a life of endless confusion and growing helplessness as an Alzheimer’s victim, and we wouldn’t want our partner to sacrifice their own life and health to take care of us. If diagnosed with Alzheimer’s I would rather exit the scene in a painless and carefully planned way, rather than prolong the agony, and my husband feels the same way.
“Your recent article on living wills makes it clear that they aren’t designed to address a situation like this, and Washington’s assisted suicide law doesn’t fit the bill either, as the person must have six months or less to live and must be mentally competent, neither of which would probably be the case with an Alzheimer’s diagnosis. It seems that at this point in time, people are really on their own here.
“Are you aware of any discussions on how a person could legally establish their wishes regarding an assisted suicide long before there is actually a reason to do it?
“This a pretty dark topic and fraught with potential for abuse I guess, but I also feel that there are probably many people out there who don’t care to live for many years slowly losing their faculties to Alzheimer’s, and don’t want to put their loved ones in the position of doing something that’s illegal.”
I told you that this was going to be a tough topic.
And now I’m going to tell you that there will be no easy, clear “Mark’s-got-a-swell-idea” type of answer — at least, not from me — because, I don’t know any. But I think that the “question” AND the topic deserves acknowledgement and thought.
If the truth be known, I think many of us — particularly many of us who have walked the “caregiver walk” — have thought this thought, more or less, one way or another. Not all of us, certainly, but many of us.
And there are plenty of us who have just been scared enough by the specter of Alzheimer’s, and what seems to be its increasing prevalence, that we’ve had to wonder (often, very privately) about the prospect of just “pulling the plug.”
If you are currently a caregiver (“caregiver” equals: Somebody who is taking care of somebody who needs to be taken care of, whether they like it or not) of someone with Alzheimer’s — or have been in the past — I’ll bet I know what you’re thinking. I’ll bet I know, because I thought it, too — it’s human, understandable and there’s no sin in the thought. Forgive yourself.
But let’s let this be about us — not somebody else — us. Me. What about me? I know what I’ve seen and I know what I’ve heard and I know what I’ve read and I do NOT want to live like that because it isn’t “life!” At least, not the way I define it — that isn’t “life,” it’s “survival” — and, maybe, “survival” isn’t the most important thing.
And what about love? The reader put it very well: “… we wouldn’t want our partner to sacrifice their own life and health to take care of us.” Is that love?? For many of us, it isn’t.
So, we wonder. We wonder, knowing that we don’t really know. We don’t really know how it is “in there” — in the mind of an Alzheimer’s patient. We only know what we’ve seen, heard and read — and imagined. But what else can we do?
We imagine it to be a sad, scary place, filled with confusion and loneliness and loss and inability and … dependence. Now, certainly, those of us who have spent time with folks who are in that place know that there is gentleness and laughter and sweetness, and I don’t mean that in a patronizing way. There can be a “sweetness” to human interaction that isn’t constantly filtered by the tyranny of our minds — an honesty. A connection on another level that can bring smiles to the faces of both people. We know it when we feel it.
But does that “rationalize” it? Is that enough for many of us to say, “Oh, well, OK, never mind. I guess it’s probably not so bad, after all.”
For many of us, it isn’t; so, we wonder.
And we worry. And we try to figure it out.
And some of us say to ourselves, something like: “I had no say in how I got here, but I will DARN SURE have a say in how (and WHEN) I get out!”
So, we wonder. And we worry.
And we try to figure it out.
Mark Harvey is the director of Information and Assistance for Olympic Area Agency on Aging. He can be reached at firstname.lastname@example.org or 532-0520 in Aberdeen, (360) 942-2177 in Raymond or (360) 642-3634. FACEBOOK: Olympic Area Agency on Aging-Information &Assistance.