Did you know that September - for the very first time - is World Alzheimer's Month?
CareGiving Kos is a community diary series posted generally on Sunday morning and Wednesday evening by volunteer diarists. This group & series is for those who are now (or have been) in the role of being a care-giver for a loved one. We want this space to be supportive and free of squabbles. Our only rule is to be kind to yourself and others who are going through a very difficult time. Please respect the concept of this group: No Politics Here.1
1 By "no politics" we don't mean "avoid politics completely" - it's too relevant, at times, to portions of the topics discussed. But keep any references to politics focused and within the context of the caregiving topic. Avoid flames, flaming, flame-wars and dragging the discussion off-topic. Thank you.
Yup. And the chapter/'month' of September in our care-giving memoir Her Final Year is "The crisis." Here's part of the intro:
You'll notice that this is one of the longer chapters in the book. Which is curious, because usually we think of a 'crisis' as a discrete moment or event, which happens suddenly.
But here is a deep truth to the care-giving experience: There comes a point where you enter into what feels like a perpetual crisis. And that period will last a long time -- longer than you think possible.
We don't talk about it much, but our country - the whole world, in fact - is facing a huge care-giving crisis, one which will cost more and last longer than most people realize. And that cost isn't just in terms of money either spent for care, or lost because someone can't do other work because they are caring for a loved one. Nope. There is also a huge cost in what it does to care-givers. Here's an excerpt from my first entry from the 'September' chapter of our book, originally posted on my personal blog in September of 2007:
And as I stood there at the sink, washing the dishes, thinking favorably on the option of having a heart attack, it sunk in that I was done. I mean, I’d been considering that a heart attack might be the best solution to my problems. Yeah, a heart attack. Hell, at 49, I’d probably survive it. It’d come as no surprise to anyone, given the kind of physiological and psychological stress I’m under. No one could blame me for no longer being a care-provider for someone with Alzheimer’s. Hey, it might even get someone to think about noticing my writing, since a tragic character (whether alive or dead) always gets more notice as an artist than does someone who has their life, and their shit, together.
So, that was that. I looked my own failure to continue right in the eye, and told my wife. I can’t continue to do this. I can’t deal with another day like this. Maybe later, but not now.
I thought earlier that I could do this indefinitely. But it has gotten so much harder in recent weeks. I don’t like to fail at something. I don’t like to set aside a job before it is done.
But it beats having a heart attack.
I didn't 'fail', of course. Neither did I go on to have a heart attack. In a postscript to that entry, I posted this:
This is one of the functions that this blog serves for me: being a form of therapy, allowing me to express things in a way that allows me to vent and get some perspective. I get it off my chest, so to speak.
And it serves another, related purpose: to help others understand just how difficult and demanding it is being a care-provider for someone with dementia, to share with other care-providers my stories as a form of support. And here, I am talking about those who choose to be care-providers for friends and loved ones at home. Professionals who do this, God bless 'em, do not have the same perspective: they get to go home at the end of their shift (or even their double shift, in rare circumstances). Doing this at home means you never get to leave.
I am by no means a 'weak' person. Not physically, not intellectually, not emotionally. And yet you can see what effects the constant, unending wearing has on me. There's a good reason why care-providers suffer huge stress-related illness, including, yes, heart attacks.
Helping to educate others about the impact of Alzheimer's is an important first step towards bringing the necessary resources to bear to face the coming crisis, and do what we can to resolve it. That's why there's a World Alzheimer's Month. Spread the word.
Jim Downey
[This has been adapted and expanded from a post on the HFY blog which got a lot of attention. I have removed direct links to our book's website.]