Journey into blankness

I penned this post back in March of 2014, just a few months before I moved to Florida.  Momma died just a little more than 2 years later in September of 2016.  Her world had shrunken to something so small it was a relief that her suffering had finally ended.

I do the grocery shopping now, and I cook the main meal. Dad cooks breakfast. We can’t leave momma alone for more than a few minutes anymore. You just never know what she might get into.

She likes cutting the towels and sheets up into smaller pieces to wrap around her dolls for blankets – she thinks they’re alive. She uses safety pins. I had to temporarily take the scissors away from her the other week because she was carrying them around in her pocket. I told her she couldn’t do that. She gave me her sour face. But I smiled and said I was only telling her the same things I would tell my kids when they were growing up.

She likes to try and feed her dolls food. She puts it in their mouths and then takes a butter knife and scrapes it back out, all the while chattering at them. She kisses them and holds them and sleeps with them. She doesn’t like to leave them, and gets agitated if she forgets where she puts one. She sits in her rocking chair and hums softly to them and smiles and laughs.

She’s just like a little girl playing tea party. But the tea party never ends and momma’s not playing.

She usually needs help washing her hair now. She doesn’t remember what conditioner is. She barely remembers what shampoo is.

This past summer I caught her using furniture polish outside on the porch thinking it was bug spray. And another day we found her using toilet bowl cleaner to wash the floor. And another day she was ironing the carpet.

She was soaking her dentures in Listerine mouthwash, and Dad, after repeatedly reminding her not to do that, had to take it away from her and put it in his bathroom.

She found a small bud vase with a large enough opening so she fills it with ice and then places it in the refrigerator. I don’t know why. Neither does she.

At dinner, if she has both a fork and a spoon she gets confused about which one to use. If she starts using the fork, then she can’t use the spoon, and vice versa. She will sit there with her hands in her lap looking at the food on her plate. It’s as if she’s attempting to summon instructions as to what she’s supposed to do next.

She doesn’t understand most conversations anymore. I can say to her – the sun is nice and bright today! – and she’ll respond with something completely off topic. I keep our conversations, such as they are, as simple and direct as possible.

She asks for my permission to do things. To eat something. To wash something in the washing machine. I’ve become her momma.

Some months ago she got really mad at us and tried to hide her medications in her bedroom. I thought she was going to try something (she gets nasty and vindictive when she’s angry), so I was watching her surreptitiously.   I went into her bedroom, located her meds and told her she couldn’t hide them. She grabbed my wrists and tried to force me to release them.

It was a very sad scene. I wouldn’t let go, and finally walked out of her room with her meds. After that, Dad had to move all her medications and put them in his bedroom so she can’t get to them.

She won’t remember what she had for dinner, but she will remember something she did months before.

Dad is three different people in her mind. He’s a woman, for some reason, in the mornings when he makes her breakfast. Then he’s either a good guy or a mean guy depending on what mood she’s in and what color shirt he’s wearing. If she gets mad at him, and he changes his shirt, she’ll sit down next to him and tell him about the ‘mean’ guy. She doesn’t remember who Dad is – that they’ve known each other since they were teenagers and they’ve been married for almost 60 years.

But she remembers that I’m her daughter, at least for now. And she remembers her other three children and some of her grandchildren and great-grandchildren. She can tell us about things that happened years ago with good clarity. And then not be able to put together a name with the face.

It’s like there are missing puzzle pieces in her brain. Arbitrary empty spaces where bits of information is gone. How can you completely forget who a person is, but remember scenes in which they were there?

She looks at pictures of Dad that were taken recently, but when she looks at him in the flesh they don’t look the same to her. I’ve held a photograph of him right up next to his face and she doesn’t think they’re the same person. How does the brain short-circuit like that?

What she sees and what she hears doesn’t get translated correctly somehow.

She wanders from room to room looking for things to do, I guess. She always loved to clean, so I think that’s what she’s doing. Looking for something that needs cleaning. So she’s constantly rearranging furniture and pictures and knick-knacks.

And when she can’t find something, she tries to accuse us of making off with it. Which, of course, isn’t true. So Dad goes hunting around until he locates whatever she’s squirreled away in some strange place that you wouldn’t normally expect to find whatever it is you’re looking for.

It’s actually easier now in some ways than it was a year ago. Then she would get frustrated and become intensely angry when she struggled with remembering how to do something – like cook. Now, she is docile and content most of the time.   It’s as if she is accepting now. We are familiar enough to her and she trusts us – most of the time. So she stays content and compliant like a small child playing, knowing her mommy and daddy are keeping her safe and providing whatever she needs.

I am thankful for each day where her heart is happy and calm, because then I feel that Dad’s heart is safe for a little while longer. Safe from the pain hovering in the shadows. At best I am only sharing his pain. But doesn’t that make it a little easier to bear? I gladly accept the burden if I can be an instrument in allowing him to feel cared for as well.

Dementia is a cruel master stealing more than memories. It’s like a fog that grows thicker and thicker eventually obliterating everything, leaving only blankness and isolation. The ones you loved the most are strangers to you as if your knowledge of them had never been.

All diseases are tragic, but dementia does more than destroy the body. It reduces the family to children crying in anguish because of the betrayal of a parent who should have always loved them. A mother who wasn’t supposed to be able to forget who they are.