Not For Sissies

I don’t have a nine to five job these days. I’m supposed to be happily retired and enjoying my Golden Years.

The last few years have been anything but Golden.

A few years ago, when my father first began to exhibit signs of dementia, he began to develop an attitude with my mother that went something like this: “You’re my wife, not my mother. You’re not the boss of me. You can’t tell me what to do.”

Oddly enough, when I would visit, he’d obey my every command. It got to the point where he’d tell Mom “No, no. Get Paula. She’ll take care of it.”

Well, I was retired. I came to visit and just didn’t leave. (Except for shorter and shorter trips home to take care of doctor appointments and Colorado home related issues as quickly as possible.)

Mom would say, “Paul, you have to eat something.”

Dad would reply. “I’m not hungry. Don’t tell me what to do.”

I would put food in front of him and say, “Dad, you have to eat now.”

“Okay.” And he’d eat.

He took his shower. He did some exercises. He ate. He drank water.

And my mother, who was starting to be weaker and less able to take care of things herself even then, thanked me every day for being there, because “He won’t mind me!”

Well, he minded me. Until the day he didn’t. He got away from me one morning, and went outside. I wasn't close enough. He turned too quickly, and I couldn't catch him. And then he fell, broke several bones and landed in a nursing home until nearly the end of his life.

I still feel responsible for the fall, although there was nothing at all I could have done to stop it. I followed him out and I ran, but I simply wasn't fast enough. If I had been close enough, we both would have fallen and both of us would have had broken bones.

Caregiving is not a gig for sissies.

Dementia told him he was saving my mother and me, because the tin of muscle ointment he found in the drawer was really a bomb and he had to get rid of it.

Yeah. It was a bomb, all right. Boom! He was gone from the house for weeks.

I will always be grateful that we got him home and got to spend the last days of his life caring for him, singing to him and just spending time with him.

Protocols during this Covid-19 era almost certainly led to his deterioration and ultimately to his death. Not being able to visit in person at the nursing home caused irreparable damage, and not just to him. It has led to my mother’s decline as well. Sixty-two years of marriage with very rare periods of separation...of course it dragged her down.

Since his death, she has steadily gotten weaker. She can no longer perform many of her own personal care tasks, let alone do housework, cooking and laundry.

That’s my job now. I’m on call twenty-four/seven.

My day starts with Mom’s awakening. After toileting, we do a morning bath. Some days it is just a good washing of all parts. The full shower days are…daunting.

My brother did a remodel of the bathtub so there is a low-rise entrance/exit rather than having to step over a high side, but these days, even that can be quite a challenging step. Once in the shower, I wash her hair and clean her thoroughly. We have a shower chair so she only has to stand a short time through the process of wash and rinse.

Getting out can be even more frightening than getting in. By the time she’s washed and rinsed, she’s tired, and lifting her bad leg over the small lip is always a task that leaves us both relieved and wondering if this might be the last time we will manage it.

Falling is not an option.

Lotion; powder. Skin check for irritation and chafing, hemorrhoids, etc. Anything that needs treatment or attention is attended to every day, sometimes multiple times a day.

Outfit of the day.

I put rollers in her hair. She likes to look nice, just like anyone else.

I settle her in her chair and cover her up with a cozy blanket.

When she showers, I get wet—sometimes soaked. At this point, I go shower and dress myself. I hurry.

Mom is on medication for kidney disease. One is a diuretic, and when she has to go, she has to go NOW. This is especially urgent in the first few hours after taking her pill.

She uses a walker, but needs help because her hands have gotten…problematic. So I try to make each trip with her to avoid accidents.

After my shower, I make breakfast. We eat and watch the morning news.

Then I wrap her legs with elastic bandages. This is to prevent swelling in her calves and feet. (Kidney disease is a bitch that just keeps giving and giving.) Some days I alternate with Ted hose compression socks, but the wraps seem to do a slightly better job.

Mom has a nap.

I do dishes and wash her clothes. Laundry happens a lot more often these days. In spite of all our best efforts, accidents do happen. Yes, we have personal care items, but you know what? Nothing is fail-proof, and that’s life. Laundry happens. No big deal.

Somewhere in the middle of it all, I make time to write. Writing keeps me sane. It keeps me from dwelling on negative thoughts.

I am not unhappy to be here. It is a privilege to be able to take care of your parents, and I am honored. I would be devastated if I was unable to be here, because she’d likely need to be in a care facility at this point otherwise.

None of my negative thoughts are about being here and doing the things I do.

No. My negative thoughts are directed at whatever power-that-might-exist who—after years of goodness and hard work and service from my parents—ignores their plight and leaves them to suffer in their final years.

I think, “How DARE you!”

I think, “Why would anyone bother, when this is what you get in the end?”

So I make up worlds and scenarios where happier endings might be possible—but often don’t happen (let's face it, I do write DARK)—so I don’t have to be angry at some entity that may or may not even be there.

Writing keeps me sane.

I do lunch; a bathroom run; clean the floors.

I chase the dog around a bit.

I pay Mom's bills as they come in. I pay my own. I shake my head and wonder why everything can’t just be free. (Wouldn’t that be nice?)

I do dinner. More bathroom runs. I wash more dishes.

We talk. We laugh. We discuss bills and household needs and groceries. We reminisce. Sometimes we have a good cry over things, because life can hit you upside the head with memories, and we miss Dad.

As evening turns to night, I help her out of her clothes and into her nightgown. I give her those last medications and I help her get into her bed. I do not fail—ever—to kiss her goodnight and tell her I love her before putting her walker close to the bed, turning off the light and leaving the room.

I take care of the dog and do last minute chores. I prepare middle-of-the- night Tylenol—she will be up in a few hours for a bathroom run, and she’ll have pain in her back. On the rare nights when she sleeps through, I always wake up, startled. My heart pounds with fear as I slip from my room, (right next to hers) to her doorway, where I watch and listen to make sure she’s breathing. Then I lie awake, sure she’ll be up any minute.

I don’t sleep well.

So...

Do I make a difference in the world? Am I making an impact?

Well…not in the whole wide world, no.

But in my mother’s world, I believe I do make an impact and I do make a difference. She is able to stay in her own home, surrounded by her familiar things, reading her books and watching her westerns. She has a loving daughter to talk to about anything that interests her. She has someone to cook and clean and take care of her.

No, it’s not a nine-to-five gig. I’m not making bank, but I have three hots and a cot, and if I need something, I can get it. It's not like anything I ever did in the working world. But I feel like I now have the most important job I’ve ever had in my life, and I wouldn’t have it any other way.

I love my mother. I guess it's not really a job. It's just my life.