Little has changed since my last post. Caregiving continues. The Day Job sputters. But I now rise at 2am—allowing myself three hours to work on my eternal novel project undisturbed. Or, mostly undisturbed. There’s always the cat.
I know it sounds crazy but that part of every day is mine. I plot out my schedule so I can be in bed early and not sabotage the tea and solitude with sleep. Every other hour I am running from task to task trying to keep loved ones fed, medicated, transported and comfortable.
It’s a strange role for me. I’ve never had kids so being responsible for others at this level is terrifying at times. And this path takes only one direction—from heartache to heartache.
But you have to find a place where you can set it all aside and still be you—if only just clinging to one tiny thread. If you can’t or don’t, you’ll diminish to the point of disappearing. And no longer be the fighter that your loved ones depend on.
The day job is slow. The caregiving is not. It’s an all-consuming and isolating phase of life. Your world closes in. You go nowhere. You turn down every social invitation until they no longer ask—and that’s a relief. You scroll past the Facebook posts of the rest of humanity going by amazed that people get on with their lives. And yet it is on Facebook that you also find your current tribe. Groups for caregivers—many of them with much more dire situations—which either make you feel not quite so sorry for yourself, or guilty that you’re even tired when compared to the challenges of others. Here are people who understand you now—better than your closest friends. It’s odd, even surreal that you feel more in common with strangers than with those around you. You’re committed to it—because it’s the right thing to do and you love your loved one who is suffering so much more than you can imagine. But you wonder what you’ll have left when it’s over—when you’ve given your all—poured into the black hole that is dementia—the incurable, one-way street.