A MISPLACED BLOG BY A DISPLACED WRITER TYPING IN A CONFINED SPACE THE SIZE OF A MERE UNIVERSE. IF YOU ARE RUNNING AN AD-BLOCKER, YOU'LL MISS A FEW FEATURES LIKE THE FANTASTIC POLL. JUST SAYIN'.

Sunday, 1 September 2019

DEMENTIA CARE: A SCRAPPY WEEK.

Dementia creates an atmosphere of randomness. Care, for fucking obvious reasons, must be part-routine and part-improvisation. Every day, every night, there’s a random challenge that’s big or small…or both at the same time, when your random challenge spawns a second random challenge.
   That’s when you hope your five steps ahead are four steps ahead and not twenty steps behind. Every random challenge risks spawning another and another until you are out in the street with your house on fire.

I have no clue when I’ll publish this post. It’s likely that I’ll try to post it in the first week of September. That’s the plan.
   Depends on how my week goes. It’s mid-week as I type, and I am having the scrappiest week as a carer. Random bullshit jumps for my throat, cuts me off at the knees, smashes through my meals, and leaves a steaming rhino turd on my path. Where’s the rhino?
   What do I do in response? I improvise. Most of the things that happened this week were small or started small. The big problem with help, a change to routine that’s meant to improve the situation, is this: every item of help you add to the list itself becomes an obstacle on that same list.

Twice this week I sustained an eye-injury. That’s okay. I have two eyes. Unfortunately, the entirely separate injuries went to the left eye on one day and the right eye very early on another morning.
   The first hit could’ve been horrifically worse, but I got lucky. And the second one would’ve been disastrous, but my skull took the brunt of it. The worst thing, though, was a slashing I took to a finger when trying to avoid opening evil plastic packaging.
   It’s the finger thing that really annoys me. I knew the evil plastic packaging was evil. And I took every piece of care. For a second there, it seemed that I’d utterly avoided the evil plastic fangs lurking in front of me.
   Seeming is not reality – seeming is merely daydreaming optimism into existence.
   Slash.

Fucking fucking hell.
   Not just FUCKING HELL.
   No.
   Fucking fucking hell.

Cuts and scrapes and thumps and bangs. Try to avoid those. Paperwork is unavoidable, and I had to deal with pointless messages, nonsensical interruptions, absurd moments, and random bizzarity. Nothing to do with the off-the-wall nature of dementia. Everything to do with the randomness that goes hand-in-hand with dementia.
   I deal with random dementia-related actions. Routine covers some things. Improvisation is part of routine and covers almost everything else. Then the outside world intrudes and you are asked to handle this bit of paperwork that you shouldn’t have to deal with.
   Monday morning rolled in and flattened everything. The system let me down. I switched to Plan B. Plan B just barely cut it, but I called that a win. When the miniature emergency was over…

I switched to ritual. And the ritual is this. I walk back inside, rain or shine, and I have that fucking coffee with that fucking chocolate biscuit. Maybe there’s some fucking swearing. Or I lose myself in the crunch of food and the elixir of life that is caffeine-based and most welcome.

Yes, I’ve been super-cool for the ambulance callouts. No, I’ve been a bag of nerves jangling like a bag of spanners held over a crate of sweating dynamite when dealing with the most trivial thing. There’s no pattern to it. That is the point. It’s a rollercoaster ride with no seatbelts. Can’t have it any other way.

Here I am, moving away from that scrappy week. It grew scrappier and crappier as the days unfolded. You are overwhelmed in this slow death by a thousand paper-cuts. I have no clue what happened after the scrappy week was long over and those cuts healed. But, for unknown reasons, a few fingertips and both tips of my thumbs came down with an attack of something or other.
   I hefted a load of cardboard, but the damaged skin didn’t look as though it’d been attacked by cardboard. The cuts I hate most are the cuts I don’t feel. Later there’s an unexplained bruise or an impossible slash. I’m busy with other things.
   August was scrappy. A long premature Autumn, punctuated by heatwaves of truly variable length. Summer, fighting back as it lost its grip. Now what? August barely into September, and full-on late September rain ushered the month in.
   Every five minutes, sunshine.

I am making more and more changes to help keep the place tidy. The immediate side-effect of this is to clutter the place with all the packaging that organisers came in. Furniture must be wrapped in polystyrene cocoons and cardboard shrouds.
   It’s no good. Boxes and bags and cartons and even more bags and cartons and bags and boxes. The supermarket stopped delivering stuff in bags. I unceremoniously dump the crate onto the kitchen floor, unless I am following the milk rule. Go on. Guess. That’s right. I flip each bottle of milk into the air and launch it at the fridge with a baseball bat. Have not lost a drop yet.
   Small victory. No more plastic bags from the supermarket. Major defeat. Excess amounts of cardboard. I bought a new bin in. Larger. At least it didn’t come wrapped in cardboard. I was surprised at that.

My question for September is this. Where did the fucking year go?
   I review the year. Another mild winter. Can’t last. I know I’ll have to buy supplies in. There are more opportunities for escorting the carer along an icy path, now that daycare visits are such a huge part of routine.
   But I hold off, chancing it, and leave winter and the start of the year behind without heavy snow or ice on that path. The long pre-Autumn jogs my memory, and I order a huge bag of salt and a box to store it in.
   The box is cancelled. Damaged in transit. I still receive a notification that the box, up for a refund, will reach me by post. A perfectly fine replacement storage box turns up. And a few hours later, a delivery driver struggles along the path with more cardboard for me.
   I have no clue what this is. He guesses bird seed. I realise it is the bag of salt, in a box. After he’s gone, I disappear into that cupboard and drop the bag next to the box. If I just heft the whole bag up in that unwieldy way, I’ll spill salt all over the uncarpeted cupboard floor, and salt will live in the cracks between the floorboards for all time.
   Instead, I make use of the scoop that came with the box, and I spend time carefully scooping salt into the large sealable container. Calming moments. Texture of granules. Smell of it all. Spreading the salt into the corners at the bottom of the tub.
   Gradually filling the box and emptying the bag. I reach a reasonable tipping-point, and heft the bag, spilling nothing. Powder acts as fluid, dropping like a waterfall into position. I tidy up the plastic packaging and the cardboard waste, and seal the box.
   My hope is that I won’t need that this winter. At least it is there. Along with the brushes for clearing the path of light snow, and the shovels for dealing with the heavy snowfall that rarely comes. Ice will come to fear the salt. If ice forms.

I prepare for winter as summer turns to Autumn. Well, they are only going to jack the price of salt up when the first frosty mornings threaten. It’s been a little over three months since the carers, who are mostly drivers, spoke of frost forming on sparkly May mornings. They rise early, and see the world in a different way.

August was full of repairs. Replacements. Revisiting things, evaluating, and dealing with bullshit. I had one utterly bollocks official conversation over the telephone. And I dealt with one utterly bollocks official conversation online. I’m glad to have months with no official bullshit to deal with.
   My curse is that I prepare. Luckily, there’s a plan in reserve for dealing with people who don’t prepare. Improvise. And I recommend an air of improvisational preparation to you all, whether you care for people or not.
   Lately I’ve been fixing things and…I managed to clear most of a room. There are steps to make in clearing another room and fixing up the loft. Everything must be tidier. Streamlined. Easy to navigate in an emergency. I’m getting there.
   Damn it, I am late for a coffee. Well, only by a few minutes. Let’s call that improvising a finish to this blog post and ad-libbing the flight-time of that coffee. Unless my computer dies an electronic death, looks as though I’ll be posting this blog effort on the first day of September. We’ll call that a win. And the bonus that goes with the win is a cup containing caffeine.

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