DEMENTIA CARE: CARING IN AUTUMN, ALL YEAR.

Autumn brings misty rain and advice on being a carer. From more than one source, there’s advice on this and advice on that and advice on getting advice. An advice bomb goes off in the autumn, and the blast from that bomb is intertwined with leaves that are losing their greenery.
   I can’t prepare for every eventuality. Woe to me on the day that the giant zombie crab invasion reaches our shores. Should have arranged for a spare giant crab can opener and a seafood recipe book, damn it.
   However, I try to prepare for most of the troublesome things that could trouble me. And I do that on a daily basis, as, often, I face challenging changes on a daily basis. Routine is a map leading to buried treasure, complete with clues, devoid of a giant X that marks the spot.
   I hunt my way across a familiar landscape, with my treasured goal always at the end of the journey. Possibly not even then. Little changes pop up, and remind me of earlier phases of dementia care. Those long-scrapped routines lie along the shoreline, and are now rusting hulks that can’t be shifted.
   They are reminders of a long-gone age of steam. I haven’t upgraded from those days. Instead, I am reduced to a small boat with a sail. In those bygone years, I used a lot of machinery to get things done.
   Buses, trains and more buses. There were scans to attend, in far-off buildings. Temples to medicine. Time passed and I availed myself of Patient Transport. This system has many pros and cons. But at least it is there, cons aside. Now I sail in a pond. All the healthcare professionals phone it in or appear in person.
   Changing routine is part of routine. Advice is all over the place at a moment’s notice. Yet it is only in autumn that a leafstorm of advice appears. How to heat your home in winter. Preparing for winter. Getting ready for winter. Winter hazards to prepare against. Are you ready for winter? Winter is coming. You know something, Jon Snow, but you don’t know what that is.
   Dehydrating and overheating in summer is a dreadful problem. Yet I don’t receive advice on that, come spring. Winter is the fiend. The evil one. We must guard against winter. When it comes, it is mild. And when it comes again, it is mild again.
   Not according to newspapers. There’s an icy blast and an arctic devil and a rabid Siberian invasion every few days…in newspapers. And then it’s a wee bit cauld. As fucking usual. Harsh winters are rare beings.
   Even slightly dicey icy weather luckily skips by this place. I feel I’m living in a leafy realm written about by Tolkien in one of his deleted scenes or half-forgotten fragments that never quite make it into his main books, but are known worldwide anyway.
   I prepare for a harsh winter, of course.
   This business of autumn warnings doesn’t reflect reality. It’s a mirrored distortion. I prepare on a daily basis. Sometimes on an hourly one. I’ve run into town to buy equipment I knew I had to set up on the same day. No waiting, not even for next-day delivery.
   It’s good that advice is out there. And it’s a positive thing to have reminders. The autumnal cluster of reminders is a strange thing, though. This isn’t a criticism that demands action. Keep providing advice. New people turn into carers all the time, overnight, and it’s a bewildering task, calling, vocation, I don’t know what to call it.
   People need assistance. Those raw to the experience need more assistance. Peculiarly, old hands to this game also need more assistance, more specialised assistance, as time passes. We all need advice all the time, no matter how long we’ve been at this.
   This is the nature of the beast. Ever-changing, more and more complicated, brimming over with pitfalls of a medical/legal nature. Yes, more advice is always handy. I just find it a bit odd that it bursts into flower just as everything else curls up and shuts down for the winter.
   Covid still has its own icy grip on services. I receive a letter telling me so. I’m in the system, so there’s no queue to wait in. It seems, though, that things are stretched so thin that newcomers to the system face delays in obtaining the basic services we already have.
   The strain is there. I’ve seen winter levels of operation going on in the summer. Daily carers are on four-day stints. In winter, with sickness levels rising from flu, you’d have four different women visiting on those four days.
   But the system is flattened by the need to check out every sniffle as if it is Covid, so daily carers vanish for short periods as they await test-results before they are allowed back in circulation. They are tested routinely anyway.
   This additional strain on the system turns summer into autumn and winter, all the year around. No matter the time of year, the busiest day is Monday. Try not to be ill on the Sunday, requiring prescriptions on Monday. Calling a surgery then is its own chariot-race, descent into hell, and journey through an apocalyptic wasteland.
   Also, don’t grow ill on a Friday night.
   Additionally, try not to be ill. Ever.
   For those new to the business of caring, here’s advice you don’t need to wait until autumn for. Yes, it is autumn as I give this advice. That is by coincidence. Make time for yourself. Leave the room. Grab that slice of chocolate. Stepping away from routine is part of routine.
   I try to write these blog posts at the start of each month. It is the first day of October. I am two-thirds of the way through writing this piece. Routine will carry me away from here, shortly…
   It is part of my morning routine to get up and get ready to do nothing. I arrange a coffee and a large biscuit and I check e-mail. At most, I’ll have half a dozen messages to get through. There’s no backlog of e-mail to battle. Ever. Caring occasionally depends heavily on e-mail, so I am on top of that very small heap of things to do.
   And I wait for the post to arrive, or take in parcels of caring equipment I’ve ordered. I find the time to catch a short video or read an article. My routine is about doing nothing much really, before the real routine starts.
   That real routine is timed to set things up for the day, in advance of a daily carer’s arrival. Sometimes the carer arrives just as I begin. Mostly, I have half an hour to arrange things. Rarely, I am kept waiting longer than that. I find things to do.
   You grab meals when you can.
   So. What advice do I have for new carers, since autumn is the time for leafy clouds of advice to blow in…
   Just the advice I gave. Make time for yourself. When morning routine is done and afternoon is around the corner, I sit down. Yes, I might sit down to type or to check all sorts of computery things. But I sit down.
   These are luxuries. Having a coffee. Sitting down. Having a coffee while sitting down. Sitting down and then standing up to go and make a coffee. Preparing the coffee machine for the next coffee. And many other coffee-based things.
   Checking e-mail isn’t about checking e-mail. Partly, it is about sitting down. But it is definitely about checking the junk folders, just in case an important e-mail about caring goes missing in action.
   The barrage of two to three e-mails arrives around 9.00 in the morning. I struggle under this burden for a good five minutes. Then the struggle ceases. I am free to wander the internet in search of this, that, or the other thing. Or no damned thing at all.
   My autumn advice is to find time for yourself all the year around. As winter comes in, you may find that tough, at first. I kept the traditional Christmas dinner going for as long as possible. But dementia changes diet, sadly.
 I still have the traditional Christmas dinner. Maybe I don’t heave the ingredients on the plate in piles that my mother thought reasonable. They weren’t reasonable. No. They made Christmas dinner a thing of excess. I could just barely manage it. And I mean that in a good way, a food way, okay, a good food way.
   The basic building blocks of Christmas dinner are still the same. Last year I made sure the damned thing didn’t half-kill me. And that is also in a good food way. Christmas can be tough. And birthdays, other things like that.
   I see autumn arrive, and with it…misty rain, slowly curling leaves, early sunset, a chill to the breeze, a silence to the streets…and loads of advice. This may be a bewildering thing, but it is a good thing.
   And now I’ve done my piece for this month, conjured from thin autumnal air, I see I still have time to sit down and do not very much for a wee while, before the daily onslaught begins. Enjoy that coffee. And if you don’t like coffee, find something else to like and enjoy that.