Abandoning Logic
After a comment from a friend on Facebook that there seem to be different types of dementia, I thought I’d talk a little bit about my mum’s experience (don’t worry, I won’t go into the whole 10 years, that would be another book and none of us would like it as much as ‘Words Without Stories’).
Here’s the thing, there are different types of dementia, Alzheimer’s being the most common. You can read all about the different types, from vascular to Lewy body dementia, on the Alzheimer’s Society website, here. They’re quite considerably more qualified to explain it all than I am. Frankly, I find it all a bit confusing (my mum had symptoms in her early 60s, which we didn’t recognise at the time, so although she was diagnosed with Alzheimer’s much later, I would say she had young onset dementia.)
Aaaanyway…I’m not sure it makes that much difference, knowing. Because each person is unique with their diagnosis as they were prior to it, and the disease isn’t going to follow any set trajectory.
This is where it can get very isolating, because you know there are many people going through something very similar to you when either you or a loved one are living with dementia, but it’s not the same. This can set your expectations way off kilter.
What I learned, really quickly, was that my approach to a problem - logic - did not work.
At one point, whilst my mum was still living at home rather than in a care home, my stepdad was unfortunately taken into hospital. This meant my mum was being looked after by carers - a situation I thought she might find unsettling. So I made a massive poster, to let her know what was going to. You know, to be reassuring.
Logic - I knew she could read, it was on a wall, so if she forgot it was right there to catch her eye again. In fact, it was so out of place, she couldn’t miss it.
And maybe she didn’t. Maybe she did read it. I have no idea, because it definitely made no impact on me having to be phoned to offer reassurance on a regular basis throughout the day.
Over time I realised that my logical way of thinking was of, essentially, no use whatsoever, because I was no longer dealing with predictable reactions.
My mum would want to go out, but if she did, she would get lost. (Making sure someone has their address on them is all very well, but if they don’t remember they have their address, you’re waiting for someone else to go through their pockets). Answer - door alarms! To alert my stepdad if she went for a midnight wander. They literally fell off the door, and, actually, disturbing someone’s small chance of sleep every night wouldn’t really be a great solution anyway.
The more things progressed, the more I realised that there were lots of ‘solutions’ around that could well work for some people with dementia, in some specific circumstances, but they weren’t working for my mum. You’re then very quickly in the territory of
1. needing a tracking device that is always on somebody’s person (so that you can find them, when they can’t find you)
2. having to make sure they can’t do anything harmful - from trying to cook a meal, to taking tablets they’re not aware of having already taken. If you think a home is a danger zone when you have a toddler, multiply it by 100 when they’re a fully grown adult who sometimes seems perfectly lucid and can catch you off guard in ways you would never even consider.
Looking after my mum must have been exhausting - it was a 24/7 job and people who are doing that, for their loved ones, on an ongoing basis, I salute you.
I had to stop using logic, or rather, look for all of the flaws. Making a sign/poster? Can easily be ignored, forgotten, not believed, not understood.
Getting ‘chair alarms’ so that you know someone has stood up? What if it happens when whoever’s looking after them is in the bathroom, and they’re out of the front door before you’ve made it down the stairs?
Never have I done so much lateral thinking as when trying to predict the unpredictability of my mum’s behaviour.
So, of course look at all of the advice out there, but when there’s a dementia diagnosis, expect all of the unexpected and don’t rely too much on logic, without considering the illogical too.
Much love,
Anna
xx
