Mark Harvey — Where to go to learn about a difficult subject


This is the last of three columns on a reader-suggested topic, which I suppose we could characterize as “death before Alzheimer’s (or anything that looks a lot like it).” It isn’t fun and there are no clear answers, so if you’d prefer not to be a part of this, please don’t make yourself a part of this — go enjoy your day.

So, why am I even delving into this? I just said that there are no clear answers, so why are we bumming ourselves out even talking about it?

Because I think that this line-of-thought deserves to be acknowledged, regardless of our religious, philosophical or societal views — because I hear it from people over and over. And if we accomplish nothing else from this discussion, maybe we can at least acknowledge that “we” (you, me, whomever) are not alone.

And aren’t nuts.

There are plenty of folks who are, or have been, families and/or caregivers of people with Alzheimer’s, who will tell us that there was love and there was joy and there was … life. I know that to be true.

And there are plenty of these same folks who could tell us…the rest of the story, so where do we land? This is a deep, and deeply personal, issue. It comes down to how we understand “life” and the purpose of life and faith — who we are, who we want to be, who we “ought” to be and why we’re even here. Purpose, faith, life and death — big stuff, serious stuff. So, if any yahoo who writes some little column or blog or gets a few minutes on some manner of media purports to have “THE ANSWER,” run screaming from the room, because you are being lied to!

Many of us can say what we believe to be “right” — so be it — but that still leaves a lot of people…groping: What do I do? What can I do? Has somebody else figured it out?

No; now, certainly, there are folks who have figured “it” out for themselves, but … “IT” — with an uppercase “I” — remains a very personal matter, and not everyone can or will immediately follow suit.

There are a couple of things you can do. You can go to http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/DeathwithDignit... and read about the actual “Death with Dignity” law, and the law itself. What you’ll see, among other things, are a lot of references to “competent” and “…making an informed decision.” Well, who can argue with that? If we didn’t have those strongly worded conditions, wouldn’t we just be institutionalizing murder for convenience or greed or…? Probably.

Some would say we already have.

You can go to http://compassionwa.org/alzheimers-diseasedementia-advance-directive/ to learn about an amazing document, the “Alzheimer’s and Dementia Mental Health Directive.” It allows a person and family to look ahead and make some decisions about what will and will NOT be acceptable to the person walking the walk, and to guide the decision-maker as the walk proceeds. It isn’t quick and it isn’t easy and (if you’re serious) it will take you some time, so be prepared.

But this is your life, so taking some time to think about the time you have, might make sense.

In my world, there is a dynamic I call, “THE Promise.” This is where someone who is ill and/or dependent, and very frightened, extracts an oath from a spouse, partner or caregiver that says, “I will NEVER put you in a nursing home!”

Ever!

And, often, that promise is kept — and, too often, the caregiver is the first to go, because she or he killed themselves, keeping their person out of a nursing home, which is where the person now ends up, anyway.

At our house, there is a ritual to which I subject my best friend, on a semi-annual basis, which I refer to as “The ANTI-Promise,” and that’s when she sighs and rolls her eyes, but I don’t care. I do it, anyway, and it goes like this: Should the point come when, as near as you can tell, I don’t know who you are, put me wherever you need me to be that will allow you to get on with your life, because I’m not going to care, ANYWAY!

She hates it when I do that, but I do it twice a year because I hope that she will (eventually) hear it.

Now, do I think that you should do that? No, but I do it because it is very — VERY — important to me. It is important to me because I believe in life. I believe in saving those who can be saved, and I believe in minimizing collateral damage. I believe those things, because I’ve been thinking about them for a long, LONG time.

Do I think that you are required to believe them? No; but I think you are required to think about them — for as long as it takes.

I’m sorry that I couldn’t do better with this subject than I’ve done. I’m sorry that I couldn’t point the way to a humane answer for people who desperately want one, and I’m sorry that we even need to be this afraid. Humanity has never been here before — not at this level and not at this scale. So, we’re in uncharted territory; naturally, we look outside ourselves to try to find the answers, and some of us find them.

Some of us don’t, so we look inside ourselves; if we’re lucky, we’ll find something there that will guide us.

For many, it’s something from here and something from there and a little from somewhere else; but if we’re really lucky it’ll add up to enough: Enough to let us live our lives in peace, with as much joy and laughter as we can wring out of it, because otherwise, the thing we fear the most has already happened:

Life passed us by, and we missed it.

Mark Harvey is the director of Information and Assistance for Olympic Area Agency on Aging. He can be reached at harvemb@dshs.wa.gov or 532-0520 in Aberdeen, (360) 942-2177 in Raymond or (360) 642-3634. FACEBOOK: Olympic Area Agency on Aging-Information &Assistance.

 

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