PEOPLE TALK TO me a lot about death, disease and disability.
Often, but not always, it’s older people (older than they were, I guess).
They talk about these ugly sides of life with patience, compassion and courage, and they remind me again and again: Courage is not the absence of fear.
But nothing — nothing — will bring on unadulterated terror like the mention of the word “Alzheimer’s.”
After all this time, I think I’m beginning to understand why.
It isn’t that Alzheimer’s is a death-sentence — it is, of course, and folks certainly know that, but death isn’t that scary to most elders.
As I’ve observed before, the crowd I hang out with is much more afraid of nursing homes than they are of morgues.
It’s the slow, insidious death of the “me.”
Listen:
I (you, her, him, whomever — so we’ll say “me”) am this unique, wonderful, complicated critter that thinks, plans, remembers, feels, sings, cries, reasons and lives.
I love, move and cause things to occur and make my own way in the world (one way or another) because I “am” — I think.
I think. So I make my own way. “I” equals “Me.”
And what makes me “me” is this mind — this soul, if you will — that I think lives in my head, but must operate in my brain or something like that.
It doesn’t really matter, I guess.
What matters is the “me.”
And by now we all know that Alzheimer’s steals the “me” — kills the “me” — and makes me … somebody else: Maybe somebody I was once, or maybe several “somebodies” that come and go. “Somebodies” that don’t really know who they are, where they are, what to do next or how to do it.
They don’t know. They only know the here and now, and that will change in the blink of an eye, so how could they know?
They can’t, so they don’t.
And the ability to be “me” — to live, to call my own shots, to know what I know, do what I do and feel what I feel — is gone. Stolen. And will never, ever come back.
That is what terrifies us, so death can begin to sound like a pretty good deal.
Does that shock you?
Many would choose death right now over Alzheimer’s later, because a dead man walking is still dead.
And here’s something else we know: If we go out by Alzheimer’s, we might take others with us.
You get it — the ones that will take care of us: Our spouses, children, grandchildren and friends — the ones we love.
The ones who love us.
The ones we won’t even know (except once in a while) or remember (except once in a while) so we might run, scream, attack, accuse, cry or molest … because we don’t know who you are.
Because we don’t know who we are.
Who wouldn’t be afraid of that?
One of the toughest conversations I ever have is with the caregiver of an Alzheimer’s or dementia patient, the one who says, “Doesn’t he know me? Doesn’t he remember me? My sweet dad would never have done that.”
No, my dear, your sweet dad would never have done that — and your sweet dad is gone.
He isn’t coming back. Ever.
You are caring for someone else.
You have to love someone else.
You have to remember, believe and … accept.
So, when I am all powerful, one of my first missions will be to grant all caregivers the power to accept what is. To remember that their person doesn’t mean to hurt or frighten, or even to escape from you.
They are trying to survive in the world in which they have been forced to live — just like you and me.
The only problem is that those worlds aren’t the same, and they never will be again.
And I will grant the ability to remember that this wasn’t their idea — they didn’t mean to do this — and they don’t mean to do that to you.
They’re just doing the best they can with what they have.
And I will grant enough wisdom to know that no caregiver will ever make it alone. Maybe you’ll survive, but you won’t “make it” unless you talk, learn, ask for help and accept it.
There are resources, tricks and “good ideas” all over — none of which will do you any good at all unless you’re willing to accept help.
If the person you are caring for loved you, they wouldn’t ask you to sacrifice your life.
And they wouldn’t ask you to make the promise.
You know: “Please promise me that you’ll never put me in a nursing home.”
That isn’t the love talking, it’s the fear — understandable — and deadly.
The time might come, and if it does, well often by then, they won’t really know anyway because in their world they don’t remember.
But, that’s a choice and to each their own.
I guess I believe in saving those who can be saved, and in my world, those who can be saved are the caregivers. Or what’s left of them.
It will still be the hardest thing you’ve ever done, but not as hard as if you were alone.
Alone is difficult all by itself, but when you’re alone with a person that you used to love and who used to love you, and you’re still alone … that’s devastating.
Long ago, I was invited to sit-in on an Alzheimer’s support group.
A couple came in, Mrs. helping Mr.
Mr. soon announced that he was pretty certain that he was “… getting Alzheimer’s …”, so he wanted to be sure that his wonderful wife had help and knew people who would help her when he no longer could.
Courage is not the absence of fear. Neither is love.
But it’s funny how often they seem to go together.
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Mark Harvey is director of Clallam/Jefferson Senior Information & Assistance, which operates through the Olympic Area Agency on Aging. He is also a member of the Community Advocates for Rural Elders partnership. He can be reached at 360-452-3221 (Port Angeles-Sequim), 360-385-2552 (Jefferson County) or 360-374-9496 (West End), or by emailing harvemb@dshs.wa.gov.
