I’m writing for a website called The Flounce. I’ve been hired to write about caregiving, which means that I’ll be shifting all of that over there for the foreseeable future. In a way this is a relief, because the tone around here has been awful serious, more so than I intended, and while my site has always reflected whatever it is I’ve been going through (recovery, cancer scare, divorce scare, caregiving), I’d really like this to be kind of…Alzheimer’s-free. For a little while. This disease has so saturated almost everything I do, personally and creatively, that I’d like one little sanctuary where I can write about stupid shit.

That being said, before I direct anyone interested in my Caregiving Journey over to The Flounce, I do want to share that I’ve reached out for additional help, in the form of what’s called a Geriatric Care Manager (GCM). In the last 8 months or so, we’ve been really feeling cast adrift as virtually all our “free time” (meaning – the hours in which we’re not at work) is being spent shadowing my mother-in-law, because she really and truly cannot be left alone for longer than an hour nowadays. We’re all swamped – me, Kevin, Kevin’s brother and his wife – and phone calls and appointments are not happening as they should be. The GCM will help us be better organized, and help carve out a clear path for us as we look for the right place to put her.

I have to say this again and again, because people who are not living this situation simply don’t get it: you cannot “just put (someone) in a nursing home,” or assisted living facility. You don’t pack her a suitcase and drop her off. Many places, we are learning, won’t even take her because she “doesn’t require” nursing care, according to their standards.  Places that can take her are so expensive that we would blow through her savings in under a year.

We have to accept that we are probably looking at another year of having her here with us, ramping up the assistance in terms of companions and personal care aides, and continuing to turn down most invitations to stuff. I worry that our friends and family are eventually going to stop inviting us places, because we’ve become, in essence, The People Who Can’t Go Anywhere. Like, one day we’ll finally be able to go to someone’s birthday party, and we’ll still be in our living room, watching Star Trek and listening for suspicious noises upstairs, because everyone has become accustomed to precisely that.

It sounds so petty and awful to complain about that. Like, boo-hoo, we can’t go to some 80s band reunion show because my mother-in-law is slowly dying of this horrible fucking disease. She still has these brief moments of clarity, where she understands that her brain is being overtaken. I can’t fathom the nightmarishness of that. Like being held underwater and breaking the surface here and there to breathe, only to go under again. That is way more of a struggle than seeing that Peter Murphy is coming to town and trying to figure out if you can schedule/finance the “down time” to go.

It is a daily lesson in acceptance and perspective and yet I still have trouble absorbing it. Because I’m an alcoholic and an addict and I am hardwired for solipsism. I simply am not naturally selfless. Lately I’ve been re-reading Lives Of The Saints as though I’m searching for takeaways in asceticism.

Because in spite of all this, I can’t call myself an atheist. I have been falling back on what little faith I have to keep me going. And there are some (plenty, really) who’d call me weak-willed and stupid for doing so. And that’s okay. We all have our coping mechanisms. I can’t drink, but I can pray and believe I’m getting an answer. And I can ask that people who don’t agree with me not be, well, dicks about my using the tools I have at my disposal.

Cripes. I said I wasn’t going to do this. Make another post on this site about Alzheimer’s and how I can feel all of the grief and anxiety altering my DNA. It’s all going over to The Flounce, effective today, while over here it’s going to be about zombies. And cupcakes. And Keytar Bear. Hopefully. Because there’s always room for Keytar Bear.

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