Talking with Dad about Alzheimer's: Part 1
Molly: Can you explain a little bit about how you were feeling or what led up to you going to the doctors for the first time?
Michael: There were quite a lot of things going back to COVID, including being less aware of my surroundings. I was banging my elbow a lot and couldn't understand what that was, so I put it down to COVID. I probably didn't actually have it at the time, but I was imagining that as a potential cause.
I think this is probably what happens to a lot of people living with Alzheimer's: other people tell them. The moment I knew there was something up was when people I knew said, "Oh, you've already just told me that." I had no awareness of having said it before.
That was when I realised something was going on.
Molly: Has there been something someone has said to you that you found to be helpful?
Michael: Several people have said many things and most of them have been helpful. But I want to particularly mention Dr Kerry, the consultant psychologist at the Maritime Centre, which is where I went to find out what was actually wrong with me.
He was brilliantly straight with me. He wrote out everything that was wrong, following on from the scans I'd had and everything else.
Then I asked him the question: "So what's the prognosis?" He deliberately didn't answer it directly. He said, "Oh, about ten years."
That was wide enough for me to think, well, okay, fine. And small enough for me to think, I should probably do something about this now.
Then this question came into my mind: what do we do now? And he gave me, I think, the best possible answer he could have given. He said, "Do your superpower." Something just settled in me when he said that. I remember thinking, yeah, that's exactly what I should do. In fact, it's what everyone should do.
Molly: What is something that you would like people to know?
Michael: It's not what you think. Before I was diagnosed, I made assumptions, like most people would, about what Alzheimer's actually is. I've been diagnosed for about a year and a bit now, and I'm still working it out.
Take this conversation right now. I'm feeling completely normal. I'm not forgetting things, I'm remembering words, and I'm putting across what I think without any difficulty. But yesterday, I got my head in a real spin because I couldn't work out the 24-hour clock. I knew I had to be somewhere at 6 o'clock and I couldn't translate that into ordinary clock time. I ended up checking and rechecking that I had the right time, and then doubting myself and checking again. That's the kind of loop you can get into.
There are other specific challenges too. One of mine is feeling very shivery. There was a moment when I felt so shivery it was almost like I'd taken off. It was just a random manifestation of the Alzheimer's, and that happens quite a lot. Things crop up that don't seem connected to anything, and honestly, those are probably the things that frustrate me most.
I have my own process for when I've forgotten something. I retrace my steps. I'll deliberately think about something else so that the thing I'm actually trying to remember has space to pop back in at the right moment.
So yes, it is about memory. Of course it is. But there's a whole load of other stuff that comes with it too. There's quite a lot of catastrophising that goes on, and then I just have a chat with it.
If you ever find yourself catastrophising, here's something that genuinely helps. Take the words that the catastrophising has stirred up in your body and turn them into a Muppet song. If no one's around, dance while you're at it. It takes all those anxious voices and makes them silly again, which is all they really are: silly voices that are just quite sneaky at getting your attention. That's the Muppet Show for you.