HELP LINE: Seek information after dementia diagnosis

THIS IS ANOTHER column about dealing with dementia.

I’m doing this because a lot of you seem to be doing that: dealing with dementia.

And that’s not easy.

Remember, every time we forget some little something, or can’t remember a name, or can’t find the car keys, it isn’t dementia.

And remember, too, that it’s critical to get medical professionals involved as soon as there is a real concern, because what looks like dementia might be something else that can be addressed and improved.

But sometimes, some of us have been through all of that, and the bottom-line is: dementia. Maybe Alzheimer’s, maybe not, but it’s dementia. And all of the alarms go off.

For many of us, one of the first things we realize is that we don’t know much, if anything, about this devastating disease — and, more specifically, we don’t have the foggiest idea of what to do that will actually help us and our person get through this.

So we go in search of information and resources, and boom, we’re buried under an avalanche of websites, pamphlets, books, blogs, email addresses and advertisements.

Wow. Now it’s too much information. That’s almost as bad as not enough.

Where do I even start?

That’s a fair question, but before I go there, I’m going to contribute to the avalanche.

Consider going to http://tinyurl.com/PDN-Dementia-Info and having a look around.

What you’re going to find is an info kit titled “Safety Concerns for People with Dementia.”

What you’re going to find inside is a mother lode of sites, booklets, etc., on various aspects of safety, such as home safety, fall prevention, driving, wandering, etc.

I know a number of the folks in Washington state who were involved in putting this together, and I can vouch for the legitimacy and value of what’s there.

I know: I just made your avalanche bigger.

The very fair question is, “Where do I even start?”

First, a reality check: You will not be required to read, understand and recall all of this stuff.

It isn’t necessary and it isn’t possible, because your primary concern is going to be providing care to your person, not becoming an esteemed academic on the topic of dementia, so try starting here: “What do I need to know right now?”

What’s worrying you right now? Is it wandering? Is it legal paperwork? Is it how to emotionally support your person while she/he tries to take in this diagnosis?

Whatever it is, start there.

Nothing immediately comes to mind?

OK, then just start somewhere, anywhere.

You’ll find, rather quickly, what feels relevant and what helps you … and what doesn’t. (Note: The best info in the world is useless if it doesn’t help you.)

And here’s another thing to remember as you’re being assailed with things to remember: One of the best sources of info and innovation is folks who have been or are now where you are, so don’t be too quick to blow off support groups, chatrooms and help lines, etc.

Most of the time, these are real people talking to real people, and the value of that is well beyond anything I could give you.

I’m going to stop today with a simple reminder for those of us who are caring for a person with dementia.

In fact, it’s so simple that it seems almost annoying — “Well, no kidding.

But the fact is that when we’re in the middle of it hour after hour, day after day, it’s the easiest thing to forget. Ready?

The “don’t mean to.”

She doesn’t mean to, and he doesn’t mean to.

Your person is not out to make you crazy by repeating the same question or not remembering the answer you just provided 11 times or not remembering where you are or what’s for lunch.

They don’t mean to.

They don’t mean to scare you by wandering, turning on the stove, leaving the stove on or thinking that they’re going to drive to the store.

They don’t mean to.

And they don’t mean to tear your heart out when, after days/weeks/months/years of loving them and taking care of them and giving up your life so they can have theirs, they look into your eyes and ask who you are.

They don’t mean to.

Love doesn’t end.

________

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.

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