A lot of caring for someone with dementia is managing our own expectations. As the disease progresses, we have to constantly remind ourselves that it takes away more than just memories.

It takes away a person’s ability to think and therefore function.

You know this. I know this, and yet we are caught by surprise over and over again.

We finally had the trees cut last week, and within hours, Jim was already talking about repainting them. He worried about paintbrushes and the fact he hadn’t painted in decades. He fixated on getting this task done. We’re talking about full conversations about the tasks and the supplies needed to paint the fence, at least once an hour from dawn til dusk.

But,  I realized a few things that made me pause.

It’s not just his memory and fear he’ll forget to do paint the fence.

He has a a tremendous amount of anxiety tied to painting the fence. He’s afraid that our neighbours (a fantastic family who has lived beside Jim for 30+ years) will be angry at the unpainted fence and ‘do something’ about it. He has no idea what that something could be, but he is truly terrified of repercussions.

Another realization was that Jim has few independent thoughts left in his head.

As we move forward, I find myself frustrated because he keeps the same conversations on repeat. Sadly, many of these are negative spins on events that occurred. Some are negative spins he puts on past events, skewing the facts to make a benign situation into some form of attack on him.

This is two pronged. One, because he’s focused on situations like this in the past, so they’ve become of the only memories left that he can easily access. Sure he can remember other things, but they require prompting.

By inserting himself into these memories, he’s trying to maintain his relevance. To remind himself that he was there and that he was worthy. Of respect? Of courtesy? Or of simply being remembered.

Dementia Jim is a very negative person. Much more than Regular Jim. In many of the books I’ve read, they warn caregivers that the person with dementia will undergo a change in personality. In Jim’s case, it’s not really a change but a regression to the basics of how he thinks of himself.

He’s no longer the badass senior manager at the office. He’s the little black child growing up in the 40s, living in an Italian neighbourhood going to the only non-Catholic school in the area which was flooded by Jews. He was warned when he left the house to be on his best behaviour and not to draw attention to himself. His best would barely be considered good enough, just because of the colour of his skin.

These days, His anxiety is high because he has an overwhelming fear that people will decide he doesn’t deserve what he has and take it away from him. Hence the urgency to paint the fence. He has an unnamed fear that the neighbour will take something away if the fence isn’t perfect.

It’s not about fixating, it’s about the unadulterated fear and anxiety that comes with having only a few thoughts left in his head. Jim knows he’s failing, which just increases his fear of losing his ‘blank’. He can no longer even articulate what he fears he will lose. It’s just once big unnamed fear.

The more his cognitive function declines, the more fear and anxiety fill the empty spaces and the more important those few indepentent thoughts become.