DEMENTIA CARE: MOBILITY, AGAINST THE ODDS.

Bits and pieces fill the world of dementia care. Most of those bits and pieces are hazards to the ankles, knees, and face. Everything is a tripping hazard. A collision problem. Top of that list: mobility equipment. Every item that turns up here as an aid to mobility can easily hamper mobility. Mind the sharp corners.
   Mobility hasn’t been all that mobile of late. Covid isolation is to blame for that. Every week, there’s a catch-up telephone call from DAYCARE. Nothing is happening. Non-business as usual. Daycare was a source of exercise. Not much exercise. But every tiny bit of exercise helps.
   Those who work in physiotherapy and occupational therapy will tell you that mobility is a finite resource. It is a perishable skill. With the march of age, you lose the ability to march. In other words, use it or lose it.
   See also: your world shrinks.
   It shrinks to the house, and can shrink further still. Fighting back from loss of mobility is harsh. But it is a vital battle. We’ve been there before, and we’ve won the good fight. That happened just as mobility equipment came into the house. It was important to keep climbing the stairs to the bathroom on a daily basis. Of equal importance: climbing back down from up there without falling the length of the staircase. Haven’t lost a patient yet.
   Making it from the door to the path, down one step, and out into the street to the steps up inside the minibus…yes, also important. Walking from the bus door to the daycare centre was part of a vital exercise regime, too.
   I was invited to the centre to see what was in store there. Walking from the main room to the kitchen and back also provides a bit of exercise. And then daycare itself provides a few basic exercises while you are in there. Dancing. After a fashion.
   All of that went away in 2020. We still had the stairs up to the bathroom, and the stairs back down again. Major toil. A vital lifeline in keeping moving. And that lasted a year. A Covid year. Mobility crashed. It literally folded at the knees.
   There were changes in sleeping. Sleeping curled up into a ball, creating super-cramped legs. And sleeping with knees in the air, otherwise. Same effect. On top of that, sitting in a chair with crossed legs that never uncross – no good.
   The basic consequence was seen in the knees. Walking with knees bent slightly. Not great. Shakier. Unsteady. Not safe. I had to act immediately. So I requested a consultation with the doctor. The doctor arranged an appointment with physiotherapy. But I couldn’t wait for the arrival of a physiotherapist.
   We’d gone a year without daycare exercise. That routine was alien. From a lifetime ago. More than a lifetime. Two days a week, I used to face an ungodly start to the morning full of stress if the daily carer didn’t show up as requested. An offer to go to three days a week. Declined.
   I liked the few hours I had to myself, but three daycare days seemed like pushing it. For both carer and cared-for.
   All gone in a blink, of course, no thanks to Covid.
   The bed is a hospital-style bed. With sides that swing up into position. No rolling over and falling out in the night, when no one is there to help you. If you don’t have a bed like that, buy bed wedges that sit in place to provide a low-key fix to that problem.
   I bought the bed wedges and rolled them up in their own straps and ties, to create an artificial bolster. This still sits in the bed, to stop the cared-for curling up at night. Problem solved within two days, thanks to a speedy postal delivery. (Something else Covid gradually eroded.)
   Next. I bought an over-the-bed table and adjusted the bed height to create less scope for sleeping with knees in the air. Sounds cruel. I bought gardening kneepads to protect the knees anyway. The over-the-bed table was improvised, using an official bedside table. It was light, though, and could be shoved aside – even by arthritic knees.
   In came the full-width bed table. Bolster. Table. Kneepads. Job done. Mobility recovered slightly. Enough to keep going. There was no way to go upstairs and down again. Too risky. So we lost that entirely. Yes, the world shrank.
   But we could still get from one end of the room to the other. Sleeping in the bed. Up and about, heading to the chair for television shows. Back and forth to the toilet. I’d invented solutions and we made a bit of progress.
   The trick was to keep that limited mobility going. Month in, month out, everything worked. A letter from the physiotherapy department promised we’d get a visit when visits were available. This was the best anyone could manage.
   In time we were vaccinated twice over, and the prospect of home visits felt a little safer. All the healthcare people come in with masks, gloves, aprons, and the fear of trailing a disease into your home.
   Another letter arrived. From the daily care department. They were all feeling the strain. Our services wouldn’t be affected. But those new to the system faced a hell of a wait. We plodded on. Shaky knees. Improvising changes to routine.
   The music at the top of the stairs went away. We made do with cookery shows on the television as the daily carers operated downstairs instead. They asked if I wanted them to make the bed for me. I explained that I always did that when they were upstairs, before. Now they were seeing behind-the-scenes, downstairs.
   Arthritis took its toll. Gripping the handrail became a problem. Shakiness in the knees increased. Then, after seven months, all sorts of departments decided to check in at once. Action was offered on all fronts.
   The physiotherapist arrived, and we changed mobility equipment yet again. If you are new to this game, understand that the shrinking world comes with a new mobility item as you cross from one zone to the next.
   Assessment ruled out the need for a hoist. I’d saved the day with my improvisations. Not for the first time, people in that department said I’d been doing their job for them. This, I don’t believe. All I did was stay active in pursuing constant remedies and solutions.
   Turns out, this is quite an achievement. I knew I couldn’t wait for a physio appointment. We were dangling over the precipice. Best to deal with that situation while you can. Trying to regain your footing after you’ve fallen into the yawning chasm is a mite tricky.
   New mobility equipment in. Old mobility equipment out. This is National Health Service property. I ask about recycling the private stuff I’ve bought in. There are places that’ll take that equipment. The physio is sometimes shocked and surprised to see official material on sale in charity shops. It’s all meant to go back to a store-room somewhere.
   We struggle with the new regime. Avoid treading on toes. Try not to bump your head when you lean down to adjust the brakes. The usual. Oh, and rearrange a whole load of furniture to account for the new item.
   That’s the situation we are all in. From one March to the next, mobility held up. And then took a dip. And from March to October, I tweaked the whole system and made tiny fixes here and there.
   Now it is November. When it rains, the rain falls on the window in a solid sheet. And when the weather is unaccountably sunny, daylight blasts through the kitchen – giving life to the unseen pattern of powdery particles swirling in the air as I open a packet of dietary supplement.
   Sheets of rain. Glowering clouds. Swirling dust. Steel beads of rainwater on the web in the top right of the frame as I open that door and stare at an autumn-winter landscape. This is a great time of year. But not to be out and about if you find it hard to walk.
   My salt-spreader, for clearing the path to the minibus, will still prove useful. I’m just altering the purpose. That’s for my safety, now, and not for use on those daycare mornings. Caring is constant, and is about constant change. Routines develop and last for a long time. Then, of a sudden, you must turn the dial, flick the switch, redraw the map, and order new pills. Pills you have to grind into powder, so they’ll blend into the drink you are pouring in fits and starts.
   We are still mobile. The tricky moves are easier to make with the new equipment in place. Well, after I made room for the new equipment. It was close there, nearer the start of the year. As we head to the year’s end, with a touch of reorganisation, there should still barely be room for a very tall tree covered in spangly lights.