Right around the time our daughter turned twelve and was old enough to be left alone for a little while without a babysitter, my husband’s parents moved in with us.
At that time, three years ago, they were still fairly independent.
George could drive. They went to the casino alone every week. They managed their own money and medications. Carole cooked for them most of the time. They lived in our basement apartment and it was like they had their own place, just connected to ours so that we could help them sometimes.
Fast forward three years and things are different.
We can’t leave Carole and George alone.
If George got it in his mind to leave the house, Carole could not stop him.
If Carole fell or had a seizure, George would not be able to call 911.
We found a new house in Pennsylvania with a basement, but they wound up taking the master bedroom upstairs instead.
George can’t drive anymore. Carole could cook, but doesn’t. If I don’t cook for them, she pours Cheerios or heats up Dinty Moore stew in the microwave.
Left to their own devices they are prone to either forget to take their medication all together, or accidentally take tomorrow’s dose today. Without someone to pay attention to what they eat, they default to whatever sugar they can find. If they eat at all.
Dementia has stolen them from themselves.
I try to remember how terrifying that must be. For Carole, especially, because she’s more aware that it’s happening. George is usually pretty blissed out, like a small child living just exactly in the moment with no memory of the past and no concept of the future.
I try to remember and hold on to a high level of compassion.
It’s not always easy, though.
Carole is always angry. And she focuses her anger on me. She is certain that I want to put her away. Paranoia haunts her and that must be awful. It’s certainly terrible to live on the receiving end of it.
I spend most of my time in my bedroom, working — because the rest of the house is hers these days. When I go downstairs, she stops what she’s doing to come talk to me about how sad she’ll be when my dog dies or what a lovely figure my little girl has.
Something uncomfortable. Always. And when she can tell I’m uncomfortable, she gets upset. I can’t say anything right. I’m just not going to talk anymore.
Only, that’s a lie. It doesn’t last for a minute.
When I let my mind wander to the truth that this could go on for many, many more years — that, if I’m a good person, I should hope it will — I get this claustrophobic sort of clenching in my brain.
The truth is, George and Carole did not prepare for a regular retirement.
They gambled, instead of putting money into a 401K. They took all the equity out of their house and then sold it on a short sale when they moved to be nearer to us after George was forced into retirement.
Mostly they just didn’t think beyond their current moment. When they were choosing not to fund a retirement account or taking the equity out of their house, they weren’t considering that they might need that money to survive in old age.
They have no resources other than social security.
If they didn’t prepare for a regular retirement, they for sure didn’t prepare for the chance that they would both develop dementia in their mid-70s.
And the truth is, they would not have spent their late-40s and 50s caring for their parents. In fact, when they were middle-aged they didn’t speak to their parents or siblings at all.
No one can hold a grudge like they can.
Maybe the reason Carole is so paranoid about being put away is because that’s exactly what she would have let happen to her own mother.
I can’t see a trauma-free path for what comes next.
At some point, Carole and George will not be able to live with us.
At some point they will need more care than we can give them. Their doctor thinks they should already be living in an assisted living apartment.
The thing is, it would be better for them. They’d have the chance to interact with other people. They’d have access to events and daily activities that would keep them active.
They’d be more independent.
It’s hard for me to imagine why Carole doesn’t want that. I’ve asked her why it scares her so much and she never has an answer. When the subject comes up she starts crying.
Fine, she says. Fine, we’ll find a place if we’re a burden on you.
At some point, we’ll have to make the decision for them. They won’t make it for themselves. George can’t and Carole has fixated on the idea that moving away from us is being put away.
Shaunta Grimes is a writer and teacher. She is an out-of-place Nevadan living in Northwestern PA with her husband, three superstar kids, two dementia patients, a good friend, Alfred the cat, and a yellow rescue dog named Maybelline Scout. She’s represented by Elizabeth Bennett at Transatlantic Literary Agency and her most recent book is The Astonishing Maybe. She’s on Twitter @shauntagrimes and is the original Ninja Writer.