Carefully Built but Easily Disrupted: A House of Cards

For years, I called the system I'd built around Mum my house of cards.

I don't know if you've every played that game - it's a delicate structure held up by balance and friction. One wee tap, or moving one of the cards, and it all collapses!

From the outside, our house probably looked ridiculous. Why is there a camera there? Why is that light there? What's this label for? Why is there tape on the toaster? Why do the keys have to go there?

Well, because every single thing had a purpose. None of it appeared overnight. I built that house of cards through years of trial and error. I'd change something, watch what happened, change it again. Eventually, everything had its place.

The problem was other people. Well-meaning people, sure. But the taps would begin. Someone would turn a plug of because...? Someone else would "move" the cups as they are "easier to find" - their words, not mine.

Someone would come in and see a label they didn't understand and rip it off.

Someone would help Mum open the door and then put the keys down somewhere instead of putting them in the place I'd created specifically for them.

Hours later, we'd be trying to work out where the keys were because now we couldn't lock the door.

Someone moved the kettle.

Someone moved the teabags.

Someone couldn't get their toast quite how they liked it, so they removed the tape I'd put over the toaster setting, turned it up and forgot to put it back.

“Sorry.”

There were a lot of sorries. It was exhausting.

Why did you switch that plug off? Sorry.

Why is this unplugged? Sorry.

Why is the door unlocked? Sorry.

Where are the keys? I don't know. Sorry.

And eventually I wanted to scream: Your sorry doesn't help me. I'm 7,000 miles away. What am I supposed to do now?

That sounds horribly ungrateful. Maybe sometimes I was ungrateful. But it wasn't that hard to just leave everything as is. I think that was what frustrated me most. To them, moving a cup or switching off a plug was one tiny, insignificant thing. To me, it could start a chain reaction that I then had to somehow sort out from the other side of the world.

This is another one of the things nobody tells you about caring for someone with dementia from a distance: help isn't always helpful!

The person helping comes in for an hour. They move something. They change something. They do something in the way that makes perfect sense to them.

Then they go home.

They've done their part.

But they don't see what happens afterwards.

The stress and fear from Mum. Looking at me for answers. Why did you move or do... Trying to calm her down whilst internally I'm seething and trying to scramble to find some way of fixing this.

That was the part people didn't see. They didn't need to. They just had to stick to the routine.

And perhaps that's why I became so protective of my ridiculous little systems.

I was called a perfectionist. I was told my standards were too high. Maybe there were. Maybe I was a perfectionist. But I was trying to keep a loved one with dementia functioning safely in her own home whilst I lived 7,000 miles away!!!

The label mattered. The camera mattered. The light mattered. The tape on the toaster mattered. The bloody keys mattered.

Because with dementia, something that looks completely insignificant to you can be the thing that allows someone else to continue doing something independently.

So eventually I stopped apologising for my standards.

When it came to Mum, I decided my standards couldn't be too high.

If you came into her carefully constructed world, you didn't have to understand why everything was the way it was. You just had to respect it.

Because what looked like obsessive perfectionism from the outside was actually a carefully built solutions to taking care of my mum.

And when you pulled out one card, I was the one who had to rebuild the house.