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'.

Tuesday, 2 August 2022

DEMENTIA CARE: TAKING THE BUS.

For over two years I received weekly calls from a woman who phoned around a whole bunch of carers telling them nothing was going on. This was a thankless task. At the start, I was keeping her informed: this is the nature of the grapevine. That’s how things go in the world of the carer. You play more rumours than Stevie Nicks does.
   As for the poor woman who phoned around everyone…she worked for an organisation. The Daycare People. After many stops and starts over the course of a year, we arranged daycare. Two days out each week, with an early rise, and much chaos, to get ready for the bus. Straight to our door. And straight back. Now that’s what I call a system.
   What was it all for? A day out, with exercises, and music, and games of very safe darts. Yes, a breather for me. And just as we were offered three days a week, Covid shut everything down in March 2020. Close to two-and-a-half years later, it is time to get back on the bus.
   There was an assessment.
   Of course there was an assessment. First time around, mobility collapsed just as we were getting ready for the first outing. Luckily, mobility recovered. Going to Daycare provided a bit more exercise. And other opportunities arose from the weekly ritual. I could arrange things. Hell, I even went to the Big City once, on a scouting mission. Trains, and everything.
   Second time around, here we are, ready to dive into the maelstrom, and mobility took a stiff dive into the ocean just before the bus was up and running again. The wheelchair came out of the cupboard. It is parked, ready, and waiting. I bought in spare inner-tubes and tyres when I realised the spares from before were already on the chair.
   Time for a whirlwind of inactivity. Stand still, have a think, and then go into action. I used archaeology to uncover ancient items of use. And I was on my hands and knees out in the street, picking up glass from the recent awkward addition of a broken bottle to the landscape. The days of gradual guidance using a Zimmer frame out to the bus are over.
   Now it’s the wheelchair ramp, and the overlapping ramp that gives a smooth transition to the main ramp. And pruning shears at the wild corner of the path, to provide an unobstructed route to the bus. It’ll be the platform on the back of the bus that lifts the wheelchair to the interior. And away you go.
   New routines, replacing old ones. Luckily, most of that equipment was there from before. The trips to the Memory Clinic were by wheelchair, in the end. Ultimately, Covid killed those off and we get by on the telephone just fine.
   But for Daycare, you really have to be there in person. It’s a whole thing. So out comes the wheelchair once again. Pump up the pressure. At the assessment, we went over all the reasons for an assessment. Some customers, clients, didn’t make it through the break. Old age, other factors, maybe even Covid, took the numbers down.
   And Covid created its own waiting-list of new potential customers. We have priority, being in the system already. So we get to test the return to something approaching normal. One day a week, well into the week. I must return to the old routine…with modifications.
   This is true of the people who work in Daycare. They must learn an old-new routine. Employees retired, or moved to new jobs. There’ll be masks for close-in work. It’s virtually impossible to ask people with dementia to wear masks. Yes, you can always ask.

We hope no one sneezes.


What changes? There’s the old wheelchair routine that’s now adapted from Memory Clinic visits and applied to Daycare trips. I used to hand a bag over, full of handy items. That bag fell to bits. The reserve bag fits into the storage at the back for the wheelchair more easily, so I guess that’s a bonus. We hereby claim victory.
   The start is the same moveable feast. A Carer visit has to go in, right at the beginning of the day. It’s already in the system. I was about to phone them to give an update when they phoned me for an update, so I added that to the list of things under discussion. Good timing saved me a phone call out. Victory!
   Now the end is also a moveable feast at some point in the afternoon. They’ll come in and then I’ll deploy the ramps. I can’t have all that metal sitting there waiting in advance. Not with our rainy weather. I’ve already been out in the grim sunshine and awkward heat, reminding myself what it is like to deploy the ramps.
   That rehearsal taught me that I needed to rush off for the pruning shears. And brush off a cobweb.
   Over the past few weeks, buildings have been deep-cleaned, cleared for insurance, checked for everything checkable and uncheckable, organised, brought out of deep-freeze, and generally shaken up. The people who worked for Daycare shifted to other roles during the long slumber of isolation.
   At least one Daycare worker converted to being a daily visitor on the Carer side of things. So we had familiar faces visiting us. Familiar faces, in masks.
   They’d leave Daycare vans behind and take up other driving jobs. Our daily Carers needed Personal Protection Equipment, and so Daycare employees raced around town in vans, covertly dishing out the goods according to a rendezvous plan based on the signs of the Zodiac.
   Now everyone in the army must return to active service. This is definitely not just about me. What changes? The entire wheelchair routine. Most pills are dished out at a different time. Usually, those are washed down with a frothy milkshake concoction…
   But to avoid throwing up in the van from travel sickness, we’ll skip that part of the process. She’ll take the milk away with her in the cool-bag, and that will see her through the day. There are many other alterations to the old routine that pile up into a mountain of newness. What to send away. How to stash that material in the bag hanging over the wheelchair handles. Keeping an eye out for postal deliveries as I plant the first ramp on the step.
   Then I get time to myself for a few hours. Always with the phone handy, in case there is an emergency. That never changes. This is why the phone is in a small pouch attached to my utility belt. That’s right. I’m the Batman. Without Bruce Wayne’s cash to back me up.
   Luckily, a lot of the expensive equipment was bought in, gradually, and there’s no need to worry on that score. I spent a few weeks budgeting for spare this and spare that. So I do have spares for everything…except myself. It’s a strange return to Daycare, one day a week at first, offering a small break. But I’ll take it.
   Everything is shuffled around. And we’re obviously going to have to invent new routines on the day. My main concern is now shovelling snow off the path early, in winter darkness, knowing there’s a fair chance of cancellation if the going is too rough for the van.
   Yes, I am getting ahead of the game. But in this game, getting ahead of the game IS the game, the whole game, and nothing but the game. Will it all go okay on the day? I guess that’s a story for another blog post. There’s still planning to do. Always.
   It wasn’t enough to explain the situation at the assessment for Daycare. I must explain things all over again to the crew. Old crew? New crew? There are things to sort out with the daily Carer, at speed. We’ll have at least half an hour to do what we have to do. There’s the awkward business of climbing into that wheelchair.
   And the crew? My guess? They’ll come to the wrong door, right on time. That’s better than the other option of coming to the right door at the wrong time. I anticipate the chance of cancellation. This happened once when the brakes on the van wouldn’t work. The only way to go out in those conditions is permanently, through a brick wall, at speed. And I can’t exactly heartily recommend that as a positive thing when it comes to care.
   Right now, it’s all hurry up, wait, plan a bit, forget a thing, remember a thing, plan a bit more. And then plan more than that, just in case. Finally, as ever, be prepared – but make sure part of your preparation is about preparing to be flexible.
   I’m sure there’s a bendy Olympic sport I’d win, based on the amount of flexibility available. The hundred metre wheelchair dash from a burning building in a shit-storm during a monsoon. Along those lines, anyway.

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