DEMENTIA CARE: ENDLESS POSITIVE SUPPORT, FOR FUCK’S SAKE.

You toil at being a carer without considering the work involved. Then outsiders, specialists, turn up on your door and tell you that you are super-organised. You care and care and care. It isn’t enough. Things change.
   There was a loss of mobility just as we headed into the final approach to daycare services. The real trick was coming back from that. And we came back from that, much to my fucking surprise. As the physio will tell you…use it or lose it.
   Also…your world shrinks.
   So I knew where we were headed, eventually. Covid takes part of the blame for what happened next. Cancellation of daycare visits. And there went a small scrap or two of exercise on a weekly basis.
   In advanced age, you aren’t going to run daily marathons. But just getting from one floor to another feels like a sporting event. There. And crucially, back. The daily climb to the bath was managed. Staged. Choreographed. And aided by the exercise that went with daycare visits.
   Daycare is time off for me, if we’re realistic about it. But exercise features in there, somewhere. Just getting out of the house, off the doorstep, along the path, down one big step and then up a short flight of steps into the bus. Followed by the walk into the centre, and over to a chair. With movement around the centre, to eat food.
   Food that wouldn’t be eaten at home, but in a social setting…that became…I’ll have some of what he’s having over there. Then toilet visits. And very light exercise sessions. Get the punters up and dancing to the greatest hits of yesteryear with a few modern ones thrown in. Even if that meant dancing while clinging to a frame for dear life. Still a dance. And certainly exercise.
   Covid came and took that away. And so, we were back to the business of moving around the house – safely. Eventually, we lost the upstairs visit and had to make alternative arrangements. Gradual evaporation of exercise opportunities. Leading to less and less mobility.
   And then other things. It wasn’t so much a goodbye to stability. Frailty kicks in, certainly. Handrails are there. But handrails only work if your hands work, and arthritis – a constant problem – eventually threw a surprise party. And handrails became a problem, along with shaky knees.
   But…other things. Other factors are at play, in the mind. Go for a walk. Okay. Remember to use both legs. Not so okay. Trail a foot behind you, forgetting to concentrate on that. Yes, walking is a skill, and dementia takes a flamethrower to skills.
   You might think walking is effortless and requires no thought, no concentration. Forgetting how to walk properly, mixed with arthritis in the hands and shaky knees…that’s what brought us to this point.
   And this point is…
   All the fucking help and support to improve the situation – at once. Unusually, I didn’t have to wait ages for equipment to arrive. It all came tumbling in. Move furniture in anticipation of equipment arriving. New piece of equipment. Move furniture a bit more. Another piece of equipment turns up. Move furniture again.
   An older piece of equipment can go, now. Move furniture after it is gone. Get rid of furniture to make room for more people. Yes, more support. They come in small teams of two, now. And they need space to get down one side of the bed.
   It’s been busy lately. That’s why I am blogging mid-month with some of the dust settled, rather than at the start of a month. And it is not over yet. There are three assessments still on the agenda. One was cancelled the other day. We’ll get back to that. Another is in the misty future, according to a letter received. And both will cause upheaval in the furniture department. Minor adjustment here, and major adjustment all over the place.
   Then there’s the other assessment that renders one assessment useless as we jump to yet another piece of equipment. Kinda sorta maybe. That is all about moving things in other rooms to work out everything in one room. Later.
   I’ll consider a lot of that. Later.
   So it’s been a time of endless positive support, for fuck’s sake. All at once. And all good. But not gradual in pace, as I’d like. I don’t get a say in what I like. Dementia care is all hurry up and wait. Then, instantly, it’s World War Three and you deal with the chaos.
   After that, there’s time for a microwaved meal and a seat if you are lucky. I have the absolute right to complain about the delay in support. But I also have the absolute right to complain about the dramatic arrival of all the support and then some, and could you just calm the fuck down while I move the furniture one more one more one more time.
   I chose to do this instead of putting someone in a home and visiting occasionally. Covid would have killed her there. This is the rubble-strewn path I am on. A volunteer, moment by moment. And I can grumble as part of the deal to see myself through it.
   Yes, I choose to grumble about all the good things that are happening now. The support was much-needed, and took a while to arrive. When it did, though, it was like…pacing the purchase of parcels from Amazon…only for Amazon to deliver them all at the same time.
   There I am, on the kitchen floor, opening boxes, recycling the paper wrapping, ditching the shrink-wrap, checking all the invoices at once. Making sure everything is there. Cross-checking the orders on computer to see that everything really is all there.
   A parcel every once in a while is a thing you deal with quickly. But all the purchases at once. Suddenly an hour goes by, a huge chunk of time, and all you’ve done is nothing very much. That’s what it is like when all the good support marches to your door in battalion strength.
   It feels that all you do, morning, noon, and night, is shuffle furniture around. In the name of safety. And convenience. It is all positive stuff. And that positive assistance needs adjustment. All of it. I’ve been adjusting routines within routines within routines. One routine that fell off a cliff was blogging at the start of October.
   Here I am past midway, and I’ve remembered to talk about all this good stuff that’s been happening. My absence from the blog for over two weeks has been a positive thing. It’s an itch that needed scratching. Eventually, I applied the ointment of typing to the blank page and here we are.
   But, yes, broadly, I am allowed to complain about positive things being dumped on my doorstep all at once. You toil at being a carer without considering the work involved. Then outsiders, specialists, turn up on your door and tell you that you are super-organised. You care and care and care. It isn’t enough. Things change. And then the burden is removed, right? No. It is removed and added to at the same time.
   Case in point. Every piece of equipment that aids mobility is a tripping hazard. Even the flattest mat can trip you up. Recently I’ve dealt with all sorts of assessments. Many are related directly to mobility. Some are indirectly connected to that loss of mobility.
   Now the mobility is still there. But it is a question of safety. What is safe to go ahead with? And what changes? Energy requirements change once you are far less active. So the nutritionist phoned in with alterations to diet. More of one supplement and less of the other.
   And so on. We are always on the lookout for changes in weight. The memory clinic phoned through and asked about the nutritionist’s involvement after a report of a change in weight. No, it’s an increase in weight from inactivity, and not a loss in weight. Going a bit over is acceptable. In the other direction, only worry waits for all concerned.
   We’re heading for winter. The house will be warm and toasty. Government support is confirmed. Though there are still a few details to work out, on that front. There’s a spare milk supply in reserve…
   If you live on milk then that product has to be there. Strawberry milk is the last taste left, pretty much. I must now blame my mother for stuffing her face with chocolate as a little girl. She spewed it all up and went off chocolate for life.
   So when the supermarket delivery van rocks up to the door with a replacement milk service, it better be a different brand of strawberry milk and not loads of bottles of chocolate milk. No good.
   Yes, sometimes you arrange your own support, lurking in the background. I am awaiting arrival of recharging light bulbs. They charge up when plugged in and aid you in the event of catastrophic loss of electricity.
   We’re on the support register for loss of gas and electricity, so we get some sort of priority reassurance there. We’ll see what happens if the winter slides into true cold and darkness. I’d already bought in extra blankets and duvets. Layers. Those are the key to survival. Layers.
   I could drink the chocolate milk myself, but it is a week’s worth and I have other drinks to get through. I’ve only had this chocpocalypse occur rarely.
   Well, here I am, grumbling about receiving help. This is permitted when you are a carer. I’d have written earlier, but I was too busy receiving all the help I am grumbling about now. Next order of business? The shopping. Text and e-mail both tell me the strawberry milk is on the way. My plan to buy in Christmas treats early covered cans and jars of things. But already there are items out of stock and thoroughly unobtainable. There’s always next week. I should only have one new assessment and piece of equipment to deal with, by then.
   Just as I prepare to publish this blog post, of course, I am interrupted by more help. An obsolete piece of equipment now goes back to the right store-room this afternoon. It’ll no longer be a tripping hazard here. This support never stops, damn it. And that’s a good thing.