The Reluctant Caregiver

And I wonder what else, if anything I have to say. It’s been awhile since I’ve been able to look at this.  Two years.  Maybe it’s time to revisit.

I imagined what her hospital room would look like.  Sunny, with a small table with lots of beautiful plants at the window. I’d bring some of her favorite pictures. Family pictures. Or that quail painting And snacks to eat. Make her think she was home. And bring that bird clock she loves so much. And we’d have conversations.

I doubt there’s many who really know what “hospice” means.  I didn’t. Once the hospital starts unplugging heart monitors. And respiratory monitors. And cords. And more monitors. Until there’s no monitors on fingers or chests. And a morphine pump is hooked up. That’s hospice. Or the start of hospice.

The air unit is still rumbling. Phones still ringing at this hour. Nurses chatter. My mom talking out of her head a little. Worried about someone messing up the house. Or dogs running loose. She’s scared. Hospital’s are not that quiet at night. I’ve pulled myself together, somewhat. I almost came completely off the rails today.  My specialty is second-guessing myself. I’m world-class. Always searching for the perfect answer. I’m scared.

Soul crushing decisions have to be made. I guess normal families discuss options and lean into each other – maybe even being at peace with a direction. That’s what I imagine happens.  Maybe some families. Not this one. Just me. Maybe I’ll be able to laugh at my brother’s response someday. Maybe he’s really afraid, too.  I hope that’s it. I’m waiting for the nurse to come in with a little morphine. Then I can quietly run home.  For awhile.

I can almost see the buds opening on the oak outside the window. Just a hint of that spring green, I love. In a day or so it’ll look like the leaves are lit from within. There’s nurses’ chatter in the background. The sound of  the air unit rumbling. I feel human for a few minutes.  I’m sure it will pass.

I was in a cold sweat within minutes of waking up this morning.  The escape of sleep usually lasts a few minutes longer. I woke up convinced I knew what I wanted to do. I just couldn’t get my arms around doing nothing. I wanted to act. Give hope. But then I talked to the orthopedic doctor and he told me the same thing the first time he was here to talk to me. I think I heard him this time. And then I talked to the hospice people. And my questions were answered in the right way.

So I’m going to feel human for just a little longer. Until I second-guess myself or have another momentous decision to make.

There’s a cool breeze coming in through the cracked door from the hallway where I’m sitting.  The lights are low and the heater by the window is running. It feels warm and cozy in this hospital room. I’ve been staring out the window watching the trees bud out. A get-well-soon balloon waves in the air above purple carnations. The crucifix on the wall is strangely comforting.  It’s sleek and simple and sparse. I can tell my mom is fighting sleep.  Like most of the night. It takes over for a little while. And then let’s go, again.

A morning prayer comes in on over the intercom.  I want to hear it but his accent makes it difficult.

A friend at work recently was lamenting his mother’s health issues.  Mostly falls, but also some other health issues – and she is pretty young – in her 70s, I think.  He knows my story and what I’m going through.  I just told him it was a marathon and not a sprint.  That he’d had to pace himself as it could be a long haul.  Not sure if that made him feel better or not.

My mom’s had a particular bad few weeks.  In addition to all the usual ailments, her sleep is now threatened.  It was about two years ago when she was in the hospital for an especially terrible UTI.  Her first night there, she was laying in bed and suddenly was filled with terror – she said that it was as if she was standing at the top of a very tall building looking out into the precipice.  (Coincidently, she is deaf in one ear and has a history of fear of heights.)  They gave her an anti-anxiety and it seemed to help.  It happened a few more times then stopped.  About a year later, it came back.  At home when she was in bed, she was again on that precipice.  And sometimes it is the opposite – she’s in a hole.  Or it is a terrible nightmare that seems absolutely real – usually, she’s lost and can’t get back home.  And it happens over and over, now, creating new terror each time.  The anti-anxiety stopped working early on – or maybe it never really helped and it was something else.  We went to see a specialist awhile back at the university and they said it was a type of hypnogogic hallucination – could also be called night terrors, I suppose. But they didn’t have any solutions for it.  Here’s how it works:  she has a terrible, sleepless night filled with night terrors, calling out for help, crying, moaning.  The next day, the hallucinations, which she occasionally has and takes medication for, are a hundred times worse. She’s exhausted, goes to bed at the end of the day and sleeps good for the next three or four nights.  Then it happens all over again.  I thought one bad night out of four or five was still good odds.  Only now, it not three or four nights, it’s one or two.  I’m not sure how she can take it.  When I was there up all night with her, and after getting three hours of sleep, I felt mentally ill, myself.

A new wrinkle in this journey.  Hopefully, I’ll be able to figure this out.

 

I’m not a natural caregiver.  I never aspired to be a social worker or a nurse – as much as I admire those who chose those vocations. I wasn’t ever really interested in being a parent – although I think I would have made a good one.

I doubt any 20, 30 or 40-year-old ever imagines that they might someday manage their parents health, finances and well-being – that they would have to switch roles completely with them.  I know I’ve remarked on this to many of those folks and I can always see that while they say yes, they get it, they don’t and probably can’t.  Until it happens.

I’ve been helping out my 91-year old mother for years, but the last four or five years have been dramatic in the shift from simply helping to all out caregiving.  I’ve learned a great deal about the aging process and particular needs of a beloved parent – in a very short period of time.  I know others like me are on similar journeys – some a much harder one, and some a little softer.  My goal is simply having a creative outlet – in this case it’s called a blog.  If it can help others – even better.