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Dementia and me

Apart from bees, moths and having to return something in a restaurant, there aren’t many things that scare me. I have a slight affinity for nihilism, so death isn’t really a massive fear for me, but there’s one thing that does send chills down my spine and that’s the idea of dementia, which runs in my family.

My dad doesn’t talk about himself much. Very occasionally, usually when we’re on our own and he’s getting bored of watching the same episode of Ancient Aliens or Pawn Stuff, he’ll open up. It’s only been in the last few years that I’ve learned about his mother and her battle with dementia. She died before I was born, so it’s not something that I’ve had to deal with, but I know it’s something that affected him deeply. She was in and out of All Saints Mental Asylum in Winson Green, Birmingham, up until her death. Judging by the name of the institution I’m guessing mental health wasn’t dealt with in quite the delicate way it should be now.

I think the fear that the same illness might be hanging around, waiting to strike, has always been with him, and it’s only recently that the signs have been popping up. My dad’s almost 70 and has always had a spotty memory. Sometimes he’ll mix up his lefts and rights. Sometimes we’ll mention a film, or a book, that we know he’s seen or read, but he’ll insist he’s never seen it, he’s never read it. Occasionally he’ll have trouble following the plot of a film. Is this dementia, or is my dad just old?

During a recent check up, my old man was asked about his mental health. When talking about his mother’s history of dementia, it was recommended that he take a dementia test. He took it and didn’t do too badly. A few of the questions he slipped up on, like writing down the day’s date. I think he was a bit concerned about this, but I assured him that there was nothing to worry about, as I wasn’t even sure what the day’s date was. Then it hit me, maybe that was something to worry about. Maybe we both had something wrong.

The doctor wasn’t concerned, he had blood tests, he’s in the clear. Still, sometimes he’ll do and say things that seem a little off. His attention will wander slightly, just for a few seconds, and it’s like he’s not quite there, not really aware what’s happening.

Then I stop and remember that he’s 70, retired, and he’s allowed to zone out sometimes. I zoned out for a minute while writing this, trying to remember where I’d put my tea, which is now cold. My parents are both retired and I think the idea that dad could get dementia in what should be the best years of their lives was pretty scary. Perhaps now I’m just biased into thinking every little sign of old age is a portent of dementia. Bec, my fiancee, got a lift home from him recently and said he’d got lost. He’d driven around in circles, not sure where he was. My dad doesn’t get lost. He gets places slowly, taking the worst short cuts in the world, but he doesn’t get lost.

“How’d we end up here?” he asked.

Bec dealt with it well, giving him directions and didn’t dwell on it.

Another sign of old age? I don’t know.

I spoke to someone on Reddit on the /r/mentalhealth subreddit. Her name’s Clare and her father suffers from dementia. He got it when he was in his early 60s, the disease usually affects people age 30-65 (I’m 30).

“It was his behaviour changing that set off alarms. He was usually so loving and caring, but over a few months he just became quite nasty. Sometimes he’d snap, for no real reason, then a few minutes later he’d be my sweet old pops again, acting like nothing happened.”

I asked if he knew what was going on.

“Yes. There’s this idea that if you have dementia you’re going to be on your own in a home, drooling in your chair, but he’s fighting that. He’s still active, he’s been told to read more, which he’s always done, and he does crosswords and junk like that, but he knows something’s going wrong in his head, something he can’t control. He can get quite frustrated when he can’t think of something in particular.”

This reminds me of my dad. Again, I wonder if this is a sign he’s got something wrong, or if he’s just being a grumpy arsehole like me. I feel bad comparing dad to this guy 5,000 miles away.

The idea of slowing losing myself, forgetting my family, my fiancée, becoming someone else, becoming no one, it’s beyond terrifying. For now, there’s no cure in sight for the disease.

The Exelon patch is a subscription medicine used to treat memory problems associated with Alzheimer’s. It can’t cure the condition, but it can slow it down. That’s better than nothing, but the benefits are “small, and non-drug treatments, activities and support are just as important in helping someone to live well with Alzheimer’s disease” according to the Alzheimer’s Society.

Some of the drugs work by preventing an enzyme called acetylcholinesterase from breaking down acetylcholine in the brain. Acetylcholine is a chemical that helps send messages in various nerve cells and people with Alzheimer’s have lower levels of this chemical. It can’t replace it, it can’t provide more, it just slows down the chemical being broken down.

The GP seems satisfied with my father and the only way to get the drug is to be referred to a specialist in dementia care.

“The disease usually affects those aged 30-65.”

I turned 30 this year and friends kept asking me how it felt. It felt, I said, just like 29 and 28 and 27 and most of my twenties. I’ve got a woman who tolerates my night farts, a dog that accepts strokes, and a shiny new PS4. Life’s not too bad. But 30 for dementia? That really messes me up. Now when I hear my dad seeming a bit off, I get sad and angry because it’s reminding me that this could be my future. I ask my fiancee to stop telling me about the signs she’s seeing because it’s just making me feel miserable. I’m worried for him and terrified for me. What if I forget all my life with Bec? What if I have kids and forget them? What if I get the disease before George RR Martin releases The Winds of Winter?

Research and progress is been made all the time. There are several areas scientists are looking into. Some are looking ways to stop tau, a protein that accumulates in the brains of Alzheimer’s patients. It can lead to brain lesions which they’re looking to stop with a drug called Rember, currently under trial. According to Alzheimer Europe, “initial results demonstrated a slowing down of the progression of AD in people with mild AD who took the drug over a 50 week period.”

Yay.

There seems to be a million different drugs and treatments being worked on, all in different stages of development, all with differing levels of success. One drug tackles this protein, another prevents a chemical, another increases it. Is it hopeless? My GP doesn’t seem to think so, not entirely. I went to talk to him after getting a mildly high score on a depression test. He told me that he thinks that progress is being made all the time and that it’ll end up being a combination of drugs that does the trick.

“The disease kills brain cells and there’s nothing to stop that, but as we learn more, we’ll be able to significantly slow the cell death down.”

Apart from forgetting the date now and then, misplacing my glasses, or walking into a kitchen and forgetting which snack I meant to make, I think I’m okay for now. I need to learn to stop worrying about something that may not even strike. I went to a football game recently and a kid was knocked over by a car and killed. I’d walked down the same road minutes earlier. I could’ve been knocked down, but I wasn’t. I don’t think about it, I don’t worry about it.

I try not to worry about losing my mind, but it’s difficult. If it happens, maybe a drug will fix it, maybe not. I’ve told the missus that if it did ever happen, not to waste her time looking after me. Just stick me in a home and leave me. The idea of being a burden is almost as depressing as losing myself. Sod it, then. I’ll read more, start the Guardian crossword and give up a bit later than I usually do. Worrying about it has the same effect as ignoring it, so I will.

Probably.

Maybe.

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