The world looks different before the sun comes up.
Out here in the woods, we don’t get a lot of light pollution, so the shift from true night to that faint, overall, blue-gray glow that precedes sunrise is gradual, letting you know the time without a clock. I used to see it all the time when The Kid was a baby; she’d wake up, and I’d feed her, and I’d cuddle her for a while until she went back to sleep. She wasn’t a great sleeper, and I’d see that glow emerge over and over again out her bedroom window. Sometimes I met it with despair; it usually meant I’d had no sleep to speak of, and would soon have to get up for real. I’d weep at the sight of it, out of sheer exhaustion.
I get up now if I can’t sleep, to give Spouse a chance to have a few more hours of peace. Which doesn’t happen because of a baby anymore; she’s not a baby at all. She turns 17 this year. A whole year lost to the pandemic, although lost is the wrong word. None of us have lost the last year, any more than we’ve lost any other part of our lives. It’s just been…strange. Suspended. Some things. Sort of.
My parents are moving again, this time to memory care, which is essentially a more structured living environment, and hopefully includes slightly more monitoring for wellness. It’s both overdue, and far too soon. It’s not clear if they both need it; certainly they need it in different ways. But they don’t want to be separated. For all the flaws in their relationship, that’s been clear for a while. Whatever we might think would be best for them, they don’t want to be apart. The environment they’re in now is unsafe for my father, so they both move.
When people have dementia, eventually you have to lie to them.
I hate this. I hate that I can do it, that sometimes I’m even good at it. I’m good at spinning stories. I’m even good, most of the time, at not offering too many details. I’m good at saying “yeah, soon” when I know “soon” means “never.”
I hate lying to them. I can do it, because I can tell my rational mind they have a medical condition, and this is required treatment.
My father wants to go back to Paris. If this somehow happened, I don’t think he’d actually enjoy it; nothing there would make sense to him, just as things here are becoming more and more confusing. There would be familiar sights, and the language, both of which would remind him of different times in his life. That would not be bad. But he wouldn’t be able to walk the streets and be independent, any more than he can here. I can’t give him Paris. Even without a pandemic, I couldn’t give him Paris.
I hate that, too.
My mother is both easier and more difficult. She wants space. She wants her bed (she will probably need a new one; the bed they have is very big), and her cat. She likes to scroll through the news on her phone, when she remembers where she put it. She likes books, even though she can’t really read anymore; or at least I think she does. My brother has pointed out she puts a good face on everything, and might be expressing pleasure over books because that’s what she’s always done. I think she likes the radio, comforting background chatter. Mostly her cat, though.
She needs to stay with my father. Simultaneously, she needs room to stay away from him. She likes her alone time, but often feels abandoned. She won’t seek out activities, but she won’t join if she’s reminded. I can’t change her. I can’t make her happy, either.
It does help, a little, to remind myself it’s a disease. If it were a disease of anything other than the mind, they’d be making their own treatment decisions, but because dementia robs you of objective reality, we’ve got to make those decisions for them. They can’t live where they’ve been living. It’s not safe. So we move them, and they’ll be unhappy about it, but hopefully only for a little while.
I suppose I’m lucky to feel such obligation to my parents. So many people have parents who don’t merit any contact at all, never mind anything like affection. There are broken people in the world, and they sometimes have children, and those children should–and can, and do–cut them off. I used to read Ann Landers now and then about elderly people, and how shameful it was that so many of their children didn’t visit them, but some of them merit that. My dad’s parents, for example.
He didn’t agree, of course. He looked after them. He held his mother’s hand when she died. That awful woman, and he was there when she needed him.
I don’t even think I can give him that. My grandmother didn’t have dementia. She died of cancer, after a lifetime of smoking. She was 86, and in a hospital, and she knew who she was and who he was.
Several months ago I called my father, and for a few minutes he didn’t know who I was. It was interesting, in a way. I gave him my usual “Hi, Dad, it’s Liz,” and he responded to the familiarity in my voice. He was polite and enthusiastic and kept fishing around for clues to my identity. When I realized what was going on, I was more clear; I don’t remember exactly what I said, but the light dawned, and he relaxed. That hasn’t happened since. I think it was confusion; I don’t think he forgot he had a daughter, he just didn’t connect the person on the phone with those memories of me.
It’s harder to tell what my mother remembers. She knows big events (like the election). She remembers unusual things, good and bad. Our phone conversations loop. She knows who I am, and who her granddaughter is. How much she tracks day to day I don’t know; I suspect not very much. On the other hand, the brain scans she had done suggested it was language that she was losing, that perhaps her visual memories were stronger. But she’s losing the ability to express that.
I can’t be there with them for this move. They’ve had one vaccination, and are getting a second one this week. I’m not even on a list until April at the earliest. This is because I’m relatively young and relatively healthy, so I can’t complain, but I’m also stuck here, as distant as if I were on the other side of the planet. Another bubble of rage and frustration that will burst someday.
I want to fix it. I want so much to fix it. I want all of this to be different. I’m so accustomed to being able to do something. I have to learn to see keeping them safe as enough.
It’s not enough. It will never be enough.
It’s brighter outside now. Definitely daylight. Officially, sunrise is in another twelve minutes. It’s Saturday, and my task list is curtailed by business hours and information from other people I likely won’t get until Monday. I have my own work to do, of course. It can be hard, though, being creative when I’m buried in sadness and guilt. On the other hand, that’s how I’ve always survived sadness and guilt.
The sun rises, and the world turns, and the planet doesn’t shift because of my mumbling troubles.
I do so wish it would.