The Caregiver’s Dilemma

I’ve been struggling with this for years it seems, when my husband stopped working back in 2005, stopped trying, stopped being motivated.

He couldn’t. He just couldn’t.

This was hard for me to understand. I’ve always been so ambitious, so driven.

The years passed. I kept trying to encourage him. Maybe you could do this. Maybe you could do that.

Then finally, it was, well, at least you could do the chores. I’ll work. You do the housework. That’s fair. And so it went.

Now, since he fell back in July 2015, that’s all changed.

I had never seen anyone fall and lose consciousness before. I was terrified. Then there were 12 hours of vomiting and being in and out of consciousness at the hospital. Then there were the months of not knowing.

What’s wrong with him? Does he have Alzheimer’s? Dementia? Is it progressive?

The answers first were “no.” And, then they were “yes.” No, he doesn’t have Alzheimer’s. Yes, he does have dementia.

After he regains his ability to speak and converse, he begins to tell me. About the concussions. All of the concussions. About the time when he was five and his brothers rolled him down a hill in an inner tube, and the inner tube stopped and he didn’t. About the time when he was eight and his best friend threw a hammer to him and the claw stuck in the back of his head. About the time he fell off a backhoe. Off the skateboard. And off the bike. And there were more. I made note of them somewhere.

More recently he admitted that when he was a kid, he and the other boys would headbutt each other. The game was to lose consciousness. And then there was the military where they also headbutted each other. While drunk.

He keeps saying he’s sorry. At first,that puzzled me. The apology would come out of the blue. He would cry as he said it.

What for? I would say.

It’s not your fault, I kept thinking. But now almost a year into the realization that my life has changed forever, and that things are going to get a whole lot worse…well, now after the headbutting stories, I wonder.

I’m no saint. I’m not a terrible person either, but I’m not a saint. I’m not a martyr. I don’t torture myself in order to feel just. I don’t seek out ways to deny myself so that I can feel righteous. That’s not my deal. If I could take a walk in the woods for the rest of my life, I would be ok. I don’t really need much else.

So when faced with caregiving, I’m not super jazzed about it. I’ve seen my mother and grandmother die. This was caregiver training, I guess. These were short-term assignments in caregiving. And there’s something different about taking care of your parents. So yes, they did change as they aged and died. They turned more inward. They were harder to reach. They were angrier and sadder. But for the most part, they were still recognizable as themselves. We still had that shared history. There were still ways to make it back to who we once were.

In my current situation, I’m dealing with the loss of my husband as he still lives. The optimistic, excited, loving, caring, giving, participating, idea sharing, adventurous man I married has receded into the shadows, and all too soon. I don’t know what my life will be like from one day to another. The yelling. The crying. The aggressiveness. The absence of conversation. The absence of participation. The doctor’s visits. The drugs. The bills. The fatigue. The despair.

The last neurologist said he has CTE. This is the disease of modern American football, popularized in the movie Concussion. This is a form of dementia caused by multiple blows to the head. It typically ends in suicide, but sometimes in murder and suicide.

I’ll admit it. I’ve been wanting to run.

And I know this is wrong. Even thinking it is wrong. And yet, the bad devil on my shoulder has captured the stage. My mind spins with ways to escape.

But this isn’t right. He would be there for me, and probably without as much inner turmoil. The fear I feel has crowded out the mourning. The instinct of self-preservation is strong in me.

One of my friends has advised me to carry my burdens with a light heart. But most of my friends have disappeared. The fastest way to clear a room is to ask someone if they’d like to be your alternate power of attorney.

Gulp. Silence.

I read an article about holding space for people. And I’m touched when I think of the few people who are holding space for me. They aren’t who I thought they would be. The people I thought I could depend on are long gone. The people I never thought would be there are showing up.

So what is love? Marriage? Friendship? What do you deny yourself and what do you keep?

I woke up this morning somewhat relieved. I didn’t have the answer, but I had the question.

The dilemma of caregiving is that if you stay, you’ll hate your life, but if you go, you’ll hate yourself.

 

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