A story about my mother’s dementia? Why, certainly. Life has its ups and downs, lefts and rights, and other wayward directions.
I haven’t explained dementia to anyone in ages. There were times in town when people asked how my mother was, and I just passed off her absence as a mobility problem. Now that her mobility is more of a problem, what I said was true. I just imported the news from the future.
Friends come and go. I wonder, right this second, if any of those lost and distant friends turned up again, how would I explain about this situation? That depends on how a friend turns up. I think of one friend who is out of circulation.
Has been utterly lost for years.
If I meet that friend while I’m out and about, that’s a conversation to get through over the course of a few minutes. But if that friend appears unannounced at the back door, it’s a conversation I must rattle through inside ten seconds.
Before my mother starts shouting at random. Better to hear the news from me…than from her. Especially if she’s happily singing, up until the sudden outburst.
“Shit, fuck, cunt, cunt, CUNT, aye, that FUCKING! CUNT THE BASTARDY BASTARD! Oh, hello, I’ve no’ seen ye in AGES. Come in. Do you take tea or coffee?”
Fuck. How to explain that. No explanation required. One glance around the house shows off all sorts of gadgets that assist with mobility and a few more that could only be dementia-themed.
News. I sat here for a big wee while, waiting to hear from a friend. This friend wanted to meet. But since I befriended this friendly sort, I moved from being an unofficial dementia carer to an official one.
And it’s time for us to meet, with all the differences and changes in place. So I’ve had to consider this subject again. I haven’t explained dementia to anyone in ages. The first challenge is meeting at all.
Dementia care takes priority. Technically, looking after myself takes priority – how can I care for someone if I’m not fighting fit…
Hey, yes, we could meet…but that might not happen, and it might not happen at the last second. This is the case, no matter the elaborate nature of the meeting. If it’s a quick hello in a café or a full-on mountaineering extravaganza, skiing uphill in bright yellow rubber clown suits with flashing red noses…
Well, shit, the basic basicness remains unchanged. The meeting might be cancelled at the last second. For unspecified reasons. So I have to talk to you about those reasons. But this is a bit heavy. How do you feel about unspecified vague heavy life-stuff that veered in out of nowhere like…
Okay, like fog in a John Carpenter movie: specifically, The Fog.
How do you navigate the fog and explain this immovable object, all over again like new, to someone who has to be warned out of fairness? I think of the people I had to tell this to. How I explained things.
And of how I flat-out refused to discuss it with one inquisitive stranger. (Still not entirely sure who the fuck that was or why she thought she had a right to stick her nose in every fucker’s business.) She got nothing from me.
The first time I mentioned dementia, I was asking about details. Did something happen, as described by my mother? Independent confirmation…or lack of same. My detective phase. I was the Batman.
No, not true. Really, I was Alfred the Butler. Clearly Alfred taught the Batman a thing or two about detective work. I wandered the streets of Gotham, looking for clues. And that meant talking to people. Not telling anyone of dementia, but asking about details and decoding reality to reach the conclusion that dementia might be the trouble.
So I wasn’t explaining at first. I was questioning and confirming and explaining by default. Few family members were instantly involved, but I knew that story would spread to wider family without much help from me.
Then I had to do the rounds. Close friends. Never pleasant, explaining why I’d be vanishing from the planet to take care of stuff. And then people all over the place bumped into me as I wandered through town…so out came the mobility story. Her friends and acquaintances hadn’t seen her out and about shopping.
Dizzy. (True.)
Unsteady on her feet. (True.)
Came down with a bit of a bug. (Also true.)
After that round of legitimate explanations, those people would see her travel into town – escorted to a doctorial appointment or a check-up at the dentist. And these acquaintances of hers could spend the full five minutes of that meeting talking and not know she had dementia, in the early stages of this meandering journey.
They might wonder why she was always escorted and never alone, suddenly.
Eventually, you are explaining it all to the dentist. By this time, you don’t imagine that you’ll have to explain it to anyone else. And it’s true…you go for ages without needing to explain. Mostly, you field visits by healthcare professionals. They are already in the know.
Yet here I am, in this situation, with a friend. Damn it. I have to explain this all over again. Keep it fresh, even though the story is so jaded…perhaps I mean the storyteller is so jaded, at this late hour.
I’ve explained it on official forms. Face-to-face. Using e-mail. Talking about it on Skype calls with friends. Text messages. Phone calls. You may just be surprised to hear that I’ve even blogged about it.
Not as myself, though.
And this time, the best way to explain was by letter. So that’s what I did – I wrote around the subject. Built up to it with industrial-strength waffle. And then I just typed enough words to get through the explanation one more time.
Obviously, I tell that story in one form or another when I come here to these monthly blog posts. Thinking hard about it, I know I haven’t explained that I’m a dementia carer to anyone this year…until I wrote that letter.
And last year, one of the busiest years of caring I faced…I spoke to ambulance crews and doctors, but there were no new detailed explanations to friends. (I’d be friends with the crews and doctors who turned up.)
Sometimes I don’t feel like talking about something on this blog until time has utterly steamrollered over it. Then I look back and read the matter over, in big fat squashed letters left behind by the steamroller. Graffiti on the Yellow Brick Road.
Okay, time to throw in genuine research. I revisited L. Frank Baum’s Oz book, and the road is of yellow brick. But Follow the road of yellow brick just isn’t bouncy enough in a song, is it? No, of course not.
Spoiler for you. Those ruby slippers were silver shoes, originally.
When will I explain dementia again?
Here on this blog, in another month, no doubt.
I sit here and think of the people I don’t have to explain anything to. People who found out anyway. The bad news ripples across the town, and to other towns. Every fucking time I have to tell the story again, I don’t know…the ripples grow fewer with the passage of time, yet the strength of those ripples is still powerful.
Yes, I explain less often. But the explanation is still about this disaster-zone of an effect that destroys concentration and makes life so random, shouty, and sweary.
This blog is about a letter I wrote to a friend to explain what had happened, when it started, and how I’m holding up under the circumstances. It’s also about finding myself explaining something away from the blog that I blog about monthly.
When to hold back. I’m holding back all the music I was listening to while building this blog post. By fuck, the music is cheery. The song I’m listening to now could start a party in a fucking graveyard.
Song after song is uplifting. Fresh and new. Well, music from within the past three years as I fill the blog with words.
Being an unofficial carer was rough. And being an official carer wasn’t any fucking easier. In certain ways on certain days, being a carer became a whole lot harder. Whenever possible, my own personal soundtrack has to be fucking uplifting, or I wouldn’t even blog. Never mind writing letters explaining the hard-to-explain…
I’ve listened to a load of great music while writing about dementia. Background music always saw me through, when writing. And in the foreground…a good meal. Flexible plans. Unexpected disasters unexpectedly diverted. The worry of getting through winter without falling victim to that one piece of ice.
Fuck that one piece of ice in particular. It never got me. We’ll call that a win. A winter win. And here I am, wandering through spring, coasting under rain, absorbing the colours in the flowers, and casting another ripple across a pond with the solid stone of a dementia story…
I am allowed to sit here and enjoy wonderful music and the thought of good friends and the memory of that chocolate thing I ate in the afternoon, even as I handle that solid stone. If I turn it into a millstone, I sink with it beneath the water. And that’s no way to go. I’m busy at a party in an imaginary graveyard. The party is real. I just don’t care to start a party in a real cemetery. The police would come. And they’d start dancing, too.
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