Alzheimer’s Caregiving, and Writing

So my Mom’s got Alzheimer’s. I’ve probably mentioned this before, but I don’t talk about it much here. She was diagnosed in 2011. At the time she was living at home with my stepfather, who was showing signs of dementia (vascular) at the time, although not nearly so advanced as my mother’s illness.

I’m not her primary caregiver. She and my stepfather moved into assisted living in 2012 and shortly afterward they had a full-time assistant living with them. When my stepfather passed in 2014, my mother moved to a memory care unit. In that respect, I have never been primary. However I am secondary. Is there a secondary caregiver? I’m taking the title though.

As a secondary caregiver I am the Driver. To appointment, which for a dementia patient is more than most because they have a difficult time talking about symptoms or caring for themselves. That means 4 times a year to the dentist, 4 times a year to her regular doc, with the 4 times a year of fasting blood test. Because of the dementia, my mother was also seeing a neurologist to keep up on her mental decline and proscribe drugs for that. That’s a lot of driving.

Then there’s the ER visits. Dementia patients fall. I am happy to say my mother’s never really hurt herself in a fall. However, every fall requires a visit to the ER for tests. The ER she goes to is always super crowded and can’t easily handle a lot of traffic. We’ve spent many hours in the hall. I guess I could let her stay there alone and talk to the docs over the phone, but neither my conscience nor heart can allow that, so there have been 6, 7, 9 hour stints there too.

ER visits often mean hospital stays. Obviously my mother’s safe there, but I’m her daughter. I have to visit. I have to visit her in the memory care unit too. I say “have to” like it’s all obligation and, to be clear, it’s not. I love her and we have had some good days together. Still, I am the only person in the area, so if I don’t visit, she gets no visitors.

It’s a lot of time. If that were all it was, writing and caring for my mother wouldn’t be so bad. But there is this huge emotional suck too. I have tried, many times, to write on days I visit her, but I only manage it about 30% of the time. It’s disturbing, exhausting, debilitating. Still, in the middle of all of this, I’ve published three romances, and wrote and published The Liars. It is possible. It’s just hard.

This summer’s been different though. This summer’s been much harder. My mother’s having a tough time walking, even with a walker, and when I almost dropped her after one appointment, I realized I cannot transport her anymore. That meant changing her doctors for the ones at her facility. Which meant contacting her guardian (which she has due to a family court battle, which I won’t discuss here), getting paperwork going, calls and finagling. That’s not easy for an introvert in the best times. When your heart hurts it’s much worse.

And it does hurt. A lot. I am freer now that it’s done. No more appointments. But it means letting go of caring for her. I’m used to letting go–I had to with two grown children–but this is different. It’s a sad letting go. It’s admitting that she is leaving me, bit by bit and it’s admitting that I have no say in that. It’s heartbreaking, and very difficult to concentrate on writing.

Add to that the fact that my mother’s sister died this year from complications to Alzheimer’s.  It has shown me that, as much as I’d like to ignore it, the clock is ticking. This week has finally seen Mom moving into a wheelchair. She can no longer command her legs to walk. This is a woman who hiked Mount Washington in NH three times. A woman with a master’s degree. A professor and a die-hard physical fitness enthusiast. What Alzheimer’s steals is breathtaking and heartbreaking.

And so it’s been a sad spring, a sad summer and I haven’t done nearly as much writing as I expected. I wish I were the kind of writer who could work through it all, but I just am not. I have no advice for writers going through this. All I can say is I try to make the moments with my mother good and memorable. I try to remember that I have years to write, but the good moments I have with my mother are quickly dwindling. I don’t want to look back and wish I spent more time with her. That’s the best I’ve got.

I believe that the worst of this last stage is over, at least emotionally. I believe I can get back into working pretty steadily. The second draft of Children of Liberty has been done for two months. I’m hoping the third will be finished in the next week.