If your life is touched, in any way, by Alzheimer’s (or any form of dementia, for that matter, but we’ll just say “Alzheimer’s”), here are two things I know to be true:
1. You HATE that disease with a passion that you didn’t know you had in you! And…
2. …you know a lot about it – You don’t think you do, but you do.
So, #1: Some of you are thinking, “…as opposed to all of the diseases what we like…??” No, but Alzheimer’s is slow, deceptive, cruel, unpredictable and robs us of the one thing that we valued the most: The person we love. The person we love slowly slips away and is replaced by…somebody else – Somebody else that we didn’t know, but now have to come to know, with little bursts of that other person who we did know, so sometimes we end up thinking, “Who are you?”
Then, we hate ourselves for thinking that.
#2? Well, the most common scenario for a lot of us is being the caregiver for the person with Alzheimer’s; we could be friends, extended family, professionals, or even the person themselves, but the one we see the most and know the best is the “caregiver” scenario.
Most caregivers for people with Alzheimer’s make it up as they go along. We do that because we don’t know what else to do. Most of us have read books and web sites and talked to pro’s and listened to others and read and read and read and…But, moment-to-moment, we make it up as we go along, because our “moment-to-moment” isn’t in anybody’s book.
Sometimes we screw it up, and we beat ourselves up: “I should have known better!” “I should have seen that coming!” “I should have known that!” “Why didn’t I think of that??”
But, we learn – Usually, the hard way.
We learn what works (today), and we learn what doesn’t. We learn (sometimes) about stuff that’s out there that can help us, and we learn about what we wish was out there, but isn’t.
But, we learn.
So, now, I want you to put yet another thing on your plate that can’t possibly hold another thing: I want you to show up at the Sequim Senior Activity Center (Yes, the “senior center”) at 1:30 next Tuesday (August 6). I want you to do that because the Western and Central Washington State Chapter of the Alzheimer’s Association is going to put on a “town hall meeting.”
The point of said town hall meeting that won’t be at the town hall is to hear from you about what ought to be in the “National Alzheimer’s Plan” (Yes, the Feds may actually be getting around to this) AND the Washington State Plan for same, because if you don’t tell them, then what will happen is that people who don’t know as much about it as you do will just make it up as they go along…
…and most of us know how that goes.
There will be a panel. The panel will get us up to speed about what’s happening on the topic, and provide some expertise to answer some questions, and talk a bit about an initiative in Washington to improve health care for folks who are on both Medicare and Medicaid (“dual-eligibles”), but the main thing is to hear from you.
I’m told that I will be there to “moderate;” interestingly, I’m not at all sure what “moderate” means, unless I’m to forestall us from breaking into spontaneous line-dancing (which might, actually, not be a bad idea), but I don’t really care, because it’s going to give me an opportunity to learn a lot from you.
You don’t have to walk-in with the Great-Solution-for-Alzheimer’s-in-the-Western-Hemisphere (unless you have one); you just need to be able to tell us what would help – What would have helped – Or, what didn’t help. Or what failed. Or what went wrong. Or what worked wonderfully!
Or what would help you to put one foot in front of the other, tomorrow.
I know that you don’t have time for this. And I know that you’re probably thinking that by the time anybody gets around to actually implementing an “Alzheimer’s Plan,” it could well be too late to do you any good – You may be right – I don’t know.
What I do know is that if we don’t share what we’ve learned the “hard way,” then everyone else who becomes forced to walk in our shoes will also be forced to learn it all, all over again – The hard way.
Please don’t do that.
Just sigh, roll your eyes, and mutter under your breath, “Oh, sure, why not? I’ve certainly got nothing better to do…” Then, show up at the Sequim Senior Center at 1:30 on August 6th and learn something.
And SAY something!
And don’t fret, because I don’t know how to “line-dance,” either, so we’ll all just make it up as we go along!
The hard way.
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