Losing a Mind

Dementia: To lose one’s mind.

As a clinical diagnosis, it means something very specific: Over time, plaque builds up in the brain, diminishing the ability of neurons to fire correctly, diminishing the ability to recall, form, and utilize memory. There are specific diagnoses: Alzheimer’s disease, atherosclerosis of the arteries of the brain, and a few dozen others. Sometimes it progresses quickly, other times slowly. It can be inherited. It’s most often a product of being a human and living a long life.

So what does it mean to lose your mind?

While many of us can picture “insanity” as a loss of connection to the reality around us – and that can absolutely be a consequence of dementia – the plebeian reality of it is a hell of a lot scarier: not being able to trust that what you remember is true.

Imagine this:

“I know we went to HR Block and filed my taxes” on January 20, of that tax year.

“Goddamnit, I went to HR Block.” April 11, the following year.

“Where does this go?” About a plate that goes in the same place it’s gone for the last 20 years.

“When did Dr. So and So move her office?” When the office has been in the same place for 20+ years.

“I thought they moved downtown.” No, that was another doctor you saw for a skin check.

“Don’t let me forget to . . . “ I won’t.

“Can I just go now?” You need to wait an hour – that’s when your appointment is.

“When is Mom coming home [from work]?” She died 8 years ago and stopped teaching 20 years ago.

“My Dad just stopped by, and . . . .” He died in 1958. And I never met him.

Think you’d be pissed off? I would. But I get to be the person who has to say, yes, I know, but . . . .

And then there are the things I don’t say. Thankfully, I don’t really care that the dishes go where they land in the cabinets and cupboards. I get irritated by the fact that he’s constantly looking for something to do, and I really don’t have a list ready to go. Not matching lids to their respective pots and cups just about drives me over the edge. And, dear god, can we stop with the telling me what to do?

But the thing that brings me to the brink of tears is when I have to be the person compensating for the fact his neurons don’t connect properly. When he tells me about talking to his dad. When he tells me about his mom dropping by. When he calls me Lois. When he clearly didn’t file his taxes even though he clearly remembers going to HR Block.

And I’m the person who has to redirect, refocus, or reframe the conversation so he can move forward. He gets mad. And who the hell would blame him? Especially for a man who has built his identity around a particularly agile mind. So he makes mental lists, repeats the details of events to himself endlessly, becomes visibly anxious when he is planning to enter a new situation, becomes angry when he realizes he’s created a memory that clearly didn’t happen. This is his life, and it’s slowly floating away on shreds of memories.

I keep hearing how patient I am. I am not patient, and I have never been patient. But since Mom died, I’ve had a crash course in controlling my emotions, picking my battles, and trying to keep the eye rolls and the stink eye and the nasty, snarky comments to a minimum. Explaining to my munchkin why Grandpa loses his temper – most often in her direction – over seemingly minimal stuff.

And, damn it, I’m angry. Because other than being here, providing structure, there’s not a damned thing I can do about. Unlike Lana, I’m not quite brave enough to imagine a world where Dad couldn’t recognize us. I hold on to the thought that (other than the time I dyed my hair black in college) Gram remembered us to the bitter end. It puts to the front of the conversation the question of what constitutes not only a good quality of life but also a good quality of death.

All of that happens, while you’re trying to manage the day-to-day with someone is no longer a person you’ve known all your life, while you’re trying to provide a secure place a person who has known you all their life to develop into a decent human being. Oh, and have a life, too.

So, if I’m angry. So be it. In our family’s case, we started having some of those discussions around life quality at end of my aunt’s life in the early 1980s, and it’s continued over the years. We have a pretty clear picture of what Dad wants: to live in his own home, to putter around, to be as in control of his destiny as much as he can for as long as he can. He doesn’t want to be in a rest home. He does not want to live on life support. My job is to facilitate that to the extent that I can.

And it’s really fricking tough some days.