Caregiver Struggles

This is Amy. Nicky is working now and I am taking care of his mom. It’s been while since I’ve made a blog post. It’s been hard to put our life into words. There are times I just can’t. Either my mind has a constant static noise that blocks creative thought or the things I could blog about are just too hard to say in public. Dementia (Alzheimer’s) is a tragic disease. It reduces a person to humbling behaviors. In some ways it’s like taking care of a toddler with all its good and bad associations, but its so much worse. She is not a baby. She is a matriarch. She is also my mother-in-law and we didn’t always have the best relationship. However, if this blog helps someone else understand dementia and caregiver life, if it helps them feel like they are not alone, then I believe it’s valuable and I’ll keep at it.

5-2-2017

Today I realized that her world is filled with either idiots or know-it-alls. Everyone, family, strangers, or TV stars, that she looks at: she is categorizing them. Are they an idiot or a know-it-all? Most are idiots. There are far more of them. The handful of know-it-alls are people whom she knows are smarter than she is and they are trying to rub that fact in her face.

There was a time when she would tell me I was just like her, that we were the same kind of people. I appreciated that. But now, since her mind is lost, I can see that I have slipped into one of the two categories. It changes. Sometimes its one. Sometimes the other.

We watch several of the day-time shows. I have to admit that sometimes I put on some pretty crazy shows just to get her attention. If she is engrossed in a show, she isn’t doing what we call “Jeopardy Speed Round.” That’s when she throws out questions like a machine gun, sometimes faster than you can answer them. And, every third question is the same.

Any show where the people have big hair, high fashion clothes, try on numerous wedding dresses, or jump around in crazy excitement from, say, winning a new car, will get a swift, “She’s an idiot!” Shows about people who weigh over six hundred pounds, live in a hording nightmare, or compete naked in the wild get a, “Would you look at that? How can they let themselves get that way?”

At first I found her reaction shocking. I would offer nervous laughter. Sometimes I would explain that a person could get to six hundred pounds if they have suffered violence or extreme loss. I’m a firm believer that our body is an outward testament of what we live through. Whether we are thin, fastidiously clean and tailored or whether we are hiding in a bubble of fat so no one can see you, both have more to say about our need for therapy than our being lazy or a good person. She would look at me like I was an idiot but she didn’t want me to know she thought that. It was a smile that didn’t make it to her eyes.

Whatever she thinks about me, honestly, I don’t care. One thing I won’t allow is for her to mistreat me. It’s subtle and I’m not entirely sure I’m in the right. Right now, I will admit, I can hardly see the forest for the trees. It’s a simple matter of taking her plate along with mine to the sink when I get up from the table. Up until now, I have had this over-reaching servant heart and done things for her. I make her meals, set it out, eat with her, take away all the dishes and wash them. She doesn’t lift a finger. Mostly, she will come and sit at the table and watch my every move. It’s a little unnerving for an introvert.

When she moved in six months ago, I treated her like a guest. If you had someone come over for lunch, this would be appropriate behavior. Sometime around five months in, the guest status was wearing thin with me. It got to where she would shove her dirty plate and cup toward me when she was finished (even if I wasn’t). If I got up, she would hold them up to me and say, “Do you want this?”

She isn’t a guest. This is her home. Our rule at dinner is everyone takes their plate, cup and silverware to the sink. Either I clear the serving bowls or I ask one of the kids to if I’m tired. Now, I know you are thinking that I trained her to follow this procedure. Possibly, but I think that she knows what she is doing. This is the same woman that rails against you if you try to help her down stairs or suggest she use a wheelchair when we go places. She is capable of taking her plate to the sink. She bolts down the hall when nature calls. She speeds to the fridge to snag a popsicle or raid the cabinet for candy the second she thinks she is alone. She even goes up and down the basement stairs to snoop around when I leave her for a minute to go up to the store. She is not that weak, frail, or wanting to be treated like she is sick.

What I do believe is that she thinks in-laws are idiots and all people should put her above themselves. I think she enjoys me waiting on her like a servant. I have brought it up a time or two about various things and I get an immediate rebuke that she can just go to a nursing home if she is unwanted. Occasionally I get “I’m sorry, but-” My thought is, a sensitive person would apologize for having made me feel that way. She doesn’t go there at all.

5-3-2017

Yesterday I was really down. It gets to me. I haven’t had a crazy dream or even a day dream in months. I loved my bizarre, creative brain. The constant presence sucks the mojo out of me. It’s like a house guest that never ever leaves and you have to play hostess 24/7. Little things like the dish issue seem to turn into monster size obsessions for me.

I read an article in an Alzheimer’s Caregiver email I got last night. It was written in the voice of the woman with dementia. She said to look at her when you talk because she can’t remember words you say. Just listening is a puzzle. She said to smile at her to let her know everything is alright. Smile at her to reassure her that you are alright. Smile because someone who is sick appreciates a smile.

So this morning, despite the cloud that cloaked me as soon as she came down the hall, I tried to smile. Often. Sure, I had the thoughts, There she is. There she sits at the table like a queen waiting for me to serve her breakfast. It would be so nice to start my day my way. She just stares at me. I want to crawl in a cave.

I sat her coffee on the table and smiled. Not actually at her. I just smiled to exercise my face. I made us French toast, served her, and sat down. I looked at her, waited for her to look at me and said, “This looks good,” and smiled. She smiled back. The bitter thoughts kept coming in my mind despite the smiles. I wonder if I’m experiencing some kind of mild depression.

I had to jump up and take care of something. She actually put both our plates in the sink. When I came back in the room, I thanked her for putting the dishes away and smiled. She smiled back.

All day, I have tried to smile while I was talking to her. She has been calm. We both fell asleep in the recliners for about a half hour. The cat woke us up. I turned to her and smiled and said, “Guess we both fell asleep.” She smiled and said, “Yeah.”

It’s been a good day. I’m not as aggravated. She is staring unblinkingly at me right now from her recliner. I smiled at her. Fake it til you make it. I may never actually ‘make it,’ but today was easier.

 

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