My last post started, “not much has changed for me.” Since then, so much has changed.
Dad passed on March 17, 2021, after a long battle with head-injury-triggered dementia.
Mom moved in with us in July 2021. We figured we had seven to ten years with her—a healthy 85-year-old with good genes. In September 2022, we thought she might have some gall stones. On September 15th, we learned she had stage IV pancreatic cancer.
We were advised to think in terms of “six months.”
She was gone in 34 days.
Our heads are still spinning. Those 34 days were surreal. There is so much I’d like to say about it and hope to do so eventually. For the moment, I need to say, I’m still here, and am working through the adjustments.
I know Mom and Dad are on to bigger and better experiences as they begin eternity with their Saviour. I also know they left here hoping only the best for those of us who remain. And so, we seek Wisdom and Providence as we step out into our own new path.
Not much has changed for me. Just the added pressure to keep my Loved One out of the hospital. I’ve been trying for weeks to get our beloved GP to establish a plan to set up an antibiotic IV at home, but I keep being put off. I called last week to impress upon them that the time is NOW. We can’t wait until Loved One is ill again to start talking about it. I have a home health company involved in Loved One’s care and they’ve confirmed they could arrange for the IV but it would require an order from the GP and yet… I get nothing. Nothing from them. Up to now they’ve been great, but it seems like this ask is too big.
And then I do get answers. And it’s No because Loved One would need a pick line and that requires a trip to the hospital and so, what’s the point?
Then another call—I have the doctors brainstorming now—maybe we could give Loved One antibiotic injections once every eight hours—IF I’m willing to learn how. Sigh. Of course I am. But, oy. I’m an arteest! Not a nurse. But nurses are in short supply during The Virus. And Medicare would never pay for a once-every-eight-hours visit anyway. Even if it keeps Love One out of the ER/hospital bed in the middle of a pandemic.
Meanwhile, it’s funny reading the agonies of all those humans suddenly quarantined, their whole busy exterior lives coming to a halt. But there’s a joke among caregivers—Welcome to our world! We go nowhere—but medical appointments—even pre-COVID-19.
So, yeah, nothing has changed. Oh, except my husband is working from home. He hates it. What’s wrong with that man? And I promise we’re leaving him alone, even while this place is teaming with CNAs, PTs, home health nurses. We’re going to install a revolving door. Yesterday one of these folks did a headcount to make sure we were under the current limit of ten people in one place. We had eight. So much for social distancing.
Of course, our main goal IS to protect Loved One so we’ve done some rearranging of CNAs to consolidate their shifts and I’ve canceled or been canceled for other things. So, yeah, we’re staying put—with our without The Virus—it’s all the same.
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.