Being a Caretaker is Starting to Make Me Feel Like a Bad Person
A dispatch from the dementia frontlines.
I want to be a good person. I really do. And most of the time, I believe that I am. But lately, I feel like my essential goodness is on trial on a daily basis.
Every day my husband’s parents sink deeper into Alzheimer’s Disease. And they still live with us. And every day caring for them gets harder. It’s like walking through a passage that continually gets narrower and narrower.
You already think it’s as narrow and harrowing and difficult as you can stand, and then it tightens up again.
I wonder if I’m a bad person because I sometimes feel like I’m escaping when I spend six days a week working at my office, from before they wake up until I have to come home to make dinner.
Making an income is my part of this deal. I earn money. My husband takes care of his parents during the day. They can’t be left alone. At all. Ever. I love my work and he hated his job, plus I earn a lot more money than he did. And they’re his parents.
The arrangement makes sense. But still, lately, I wonder if I need it too much.
Does it make me a bad person that my mother-in-law asks her son not tattle on her to me?
One of her mind loops involves talking to strange men about our teenage daughter’s body. She has such a beautiful figure. Absolutely gorgeous. Such lovely legs. Does’t she have lovely legs? She got caught in that loop when we had a guest at our house last night. When my husband talked to her about it, her response was but Shaunta wasn’t even home.
Because apparently sexualizing my kid is fine, as long as I don’t hear it.
And then I have to wonder if I’m a bad person because I’m too hard on her. Because she can’t help it. Her brain is atrophying, for God’s sake. It’s tangling. What kind of asshole blames a person with Alzheimer’s Disease for behaving like a person with Alzheimer’s Disease?
Am I a bad person because it irritates me that they would not have cared for their own parents the way their son cares for them? Because they absolutely wouldn’t have.
They didn’t even speak to their own parents when they were old and ill. That caused such a rift between Carole and her sisters that they didn’t speak for two decades. Not until we moved to Pennsylvania last year and put Carole right in their faces and they could see that how far her disease had progressed.
They couldn’t hold on to their long-standing grudge when she couldn’t remember anything at all about why they were angry in the first place.
Or worse, am I a bad person because it bothers me that they have done nothing — nothing at all to prepare for any of this. No insurance. No house to sell. No savings.
Did the fact that they were going to get old some day never occur to them?
My husband can’t work because they can’t be left alone and I’m afraid it makes me a bad person that I have moments of bitterness that they’re stealing his life from him and not leaving him anything in return.
He told me the other day that it wasn’t supposed to be like this. They were supposed to get old and be healthy until they died of old age, and I wondered what gave him that idea? The two packs of cigarettes a day each for fifty years? The atrocious diet full of processed foods and almost no vegetables? The untreated diabetes and high blood pressure? The fact that gambled away all the equity in their house, so that when old age did sneak up on them, they had no choices at all?
The utter lack of planning?
If their old age had been anything other than this, it would have been a miracle. And I feel like an asshole for believing that, even if it’s true.
If they’d encouraged their only son to go to college, instead of actively convincing him that he wasn’t smart enough for it, maybe we’d be in a position to help pay for them to go to a nice nursing home, instead of the kind of place they’d be in if they didn’t live with us.
And there will come a day when they can’t live with us. Alzheimer’s is unrelenting.
I am honestly afraid that my husband might spend all of his middle age caring for his sick parents, who lived their own lives without any concern at all for their old age— and then find himself retirement age by the time they give him back his life.
And, you know, both of his parents have Alzheimer’s disease. Both of his parents were showing signs of their illness by the time they were fifteen years older than he is now. Maybe even ten years older.
Does it make me a bad person that in my darker moments, that terrifies me? And that if the love of my life has fifteen fully healthy years left, I am afraid that I’ll spend my life resenting that they were spent this way.
And I don’t know if it makes me a bad person that sometimes I’m almost overwhelmed by how colossally unfair all of this is. Even though I’m aware that fairness and life aren’t really things that go hand in hand.
Their doctor mentioned a couple of months ago that it was time to start thinking about assisted living. And I wonder if I’m a bad person because I agree. The passage has narrowed to that point.
Carole’s transitioning quickly. The only reason they’ve been able to live with us for so long is because she’s been able to care for George. She won’t be able to much longer.
In the last few weeks, she’s started to forget whether they’ve eaten, whether they’ve showered. She’s starting to forget conversations while she’s still in the middle of them. The one household chore that she’s taken care of since she’s lived with us has been feeding the dog and the cat and lately, she can’t remember if she has.
And her husband’s losing more fundamental skills. Like how to eat. Two nights ago we took them out to dinner. He ate a salad dry and then downed his little cup of French dressing like a shot of tequila. Like how to shave. Left to his own devices, he coats his entire face with shaving cream.
They’re both incontinent, I reminded my husband this afternoon. What will we do when they can’t manage their own adult diapers?
That’s the thing that will kick the nursing home question up into the realm of immediacy, their doctor assures us. Either that, or they’ll start leaving the house.
The first time we have to call the police because we can’t find them, it will change everything.
What then? It seems unconceivable to me that we don’t know. They have no money. No savings, no home to sell, no insurance, no 401K or retirement or resources at all. Just social security. And us.
And they are draining us.
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 on Twitter @shauntagrimes and is the author of Viral Nation and Rebel Nation and the upcoming novel The Astonishing Maybe. She is the original Ninja Writer.