DEMENTIA CARE: REACHING THE KEYBOARD.

I do what I can to blog at the start of the month. This is not always possible. Usually, I hit the keyboard in the first week. Rarely, knowing I’ll be busier than a bee in high summer, I will write up a blog post at the end of the month. Stick it in the freezer. Thaw it out when required, on the day.
   Caring routine is about setting up routines that aren’t routines. Things move around. Just having a heating system go through its annual maintenance. Something relatively simple along those lines. That can mess up so many routines. A letter comes in.
   Please make the premises available. We will call on this day. That’s that. Immediately, I think of the day of the week connected to the maintenance visit. Different days have wildly varied structures to them. Like this bread instead of that bread, or that cheese instead of this cheese, the days of the week have different characters to them.
   Yes, the days all blur into the same day. Dementia care is that way for the carer and the cared-for alike. But you try to stamp something different on each day, to generate variety. I know Monday is Monday based on the basic idea: if I’m testing the fire alarms, it must be Monday. You may see a flaw in this plan. But I’ve never tested the fire alarms on any other day by mistake. Just lucky, I guess.
   Carers are in every single day. This adds to the sense that each day is a day of the week. What day is it today? It’s Strawberry. Routine. Testing fire alarms. Other routine. Carers visit. I don’t test the alarms until the carers have been and gone in the morning.
   If they arrive in the morning. Busy days push them nearer 12.00, and they may arrive in the morning and leave in the afternoon. I go through the jumble of morning routine. Carers come and go. It is Monday. I test the alarms. But when I test them is based on the carers and their ability to leave the building.
   The carers just walk in. And I don’t want the carers to walk in while I am testing fire alarms, as they might think there is a fire. Testing the alarm upstairs sets off all the alarms in the house. So I kick that confusion away. I wait for the carers on a Monday, before testing. Just in case they arrive super-early, well before they should turn up. No scope for confusion. If they hear an alarm when they walk in on a Monday, that means there is a fire. They know I test the alarms on a Monday once they are gone.
   This is the level of planning you develop over time as routines change. Once, there were no carers. I’d test the alarms on a Monday, giving a warning to the cared-for not to panic – this is just a test. Incidentally, if you aren’t testing your fire alarms every week…test them every week.
   And I don’t know what sort of Victorian house you are living in if you don’t have fire alarms and carbon monoxide alarms. But if that’s the case, buy alarms. Test the alarms. Maintain the alarms. If they are battery-powered, keep spare batteries ready.
   That annoying beep tells you the battery is low. Replace the battery. Don’t remove the battery and forget about it. Anyway. Regular routine isn’t even regular. On a Monday, one routine depends on the routines of other people. How many extra visits did Headquarters throw at them?
   You are told, when the service starts, the visit is an estimate. Carers get to you when they get to you. Before they reach you, they might have a catastrophic problem with the van. Or they are delayed at a house, waiting for an ambulance. And so on. It’s an estimate. If they take more than an hour, you might get a phone call to say they are late. That’s if your regular team is on that day.
   You don’t know who is available until they walk through the door. If they are replacements, and they are not familiar with the whole run of houses they must visit, then everything slows down for them on every visit. They need to find out where the towels are. What pills to hand out. Where the special equipment is stored.
   Special equipment in plain sight is always a Mystery Bag of Mischief. Every floor hoist and ceiling hoist and hoist sling is different. They operate differently. Devices recharge one way or another. Place the hoist at the end of the rail to recharge. Or place the hoist anywhere but the end of the rail to recharge.
   So. Monday. Fire alarms. I test them when the coast is clear. But clearing that coast is pure guesswork. That’s a fairly straightforward example of routine that moves around, during the day, on one particular day of the week. There are many other things that happen spontaneously or they are arranged well in advance. Either way, you have to shift routine around.
   And one part of routine, the part that can most easily go by the wayside, is blogging. The first two weeks of this month have been more random than usual. Summer weather kicked in. This meant the sun shone in the sky, consistently, for a few days at a time. Then cloud closed in.
   Hell, it even rained before things heated up again.
   Weather is predictably unpredictable. There are hot weather routines and cold weather routines. And these must be ad-libbed. The fan goes on, to circulate air. This is full-blast if at night, aimed in the general direction of the bed. And in the morning, too.
   But for daytime into early evening, there’s a transfer to the chair. So I move the fan closer, place it on the floor, and reduce the blast. Too much of a good thing leads to chilling elderly skin and a dehydration effect. Anyway, there’s more to do in the heat. So more is done, and that shifts routine around.
   The carers bask in the fan. When they are in, the fan is up high out of the way of the chair that has to go back and forth when transferring from bed to chair or chair to bed. And that fan’s up high so we don’t use the chair to demolish the fan. Up high, out of the way, providing general support, the fan is perfectly placed for the carers. No complaints from them.
   Along with the fan routine, there’s the supply situation. The supermarket decided, two weeks in a row, to stack all the deliveries early. I had super-early text messages directing me to super-early e-mails telling me what wasn’t available at the supermarket as the supermarket opened. Funny, that. When they don’t do this super-early, nearer actual delivery time, I receive the products I ordered in.
   Early notification. They didn’t have the essential lifeline: strawberry milk. Instead of going with their own brand of strawberry milk, they sent chocolate milk. And that’s no good. It had to go back. Yes, I have spares to see me through a crisis like that.
   But…sending the chocolate milk back, there’s still going to be a gap in the supply. I can’t take the risk. What if they do this to me two weeks in a row? Survivable. But you don’t want to face this three weeks in a row. So this glitch sends me back to the internet to order in an extra delivery the next day. And I have to wait around the next day, for that delivery. Sure enough, strawberry milk is back in stock.
   What’s my point? An extra delivery, above and beyond normal, eats into blogging time. Dishing out extra drinks of milk in rising temperatures…is essential. And eats into blogging time. Fill a cup with a cold drink from the fridge, and time yourself drinking it as fast as you can.
   Now imagine drinking that over the course of twenty minutes. That’s how long it can take, when the person drinking has no concentration. Yes, the cup has a lid on it. Spills are annoying, and cleaning a spill would eat into blogging time. Does this matter? No. Blogging can always wait.
   I’m not here to list all the things that shoved this blog a fortnight deeper into the month than usual. But I did wrestle a machine into a fight with a tree. And the top of the tree lost that fight. This ate into the branches and the leaves. And into blogging time.
   If I write one of these blogs, I try my damnedest to write in one solid chunk. If I can’t do that, the blog falls by the wayside that day. Right now, I wrote about half of this material. Then I stopped to make a bed before the arrival of a supermarket delivery.
   Now I am finishing this blog just minutes before I’m in the delivery zone. Soon, I’ll find the time to have a meal. This blog is about all the things that add up to kill off your writing time. Even writing in one solid chunk wasn’t possible today. Two chunks, stitched together, sealed the deal. Better late than never.
   Writing the blog is not a priority. I look after someone who has no concentration. That is the priority. I see by the power of the software that I’ve written enough for now. Now, I must go and see to other things. Then I’ll return at some point, and publish this. But I’m too busy to hit that button, just yet. 

Hours and meals later. Many things took up my time. This ate into blog publication time. I still have to process this text. You used to be able to drop the words into the blog and that was that. Now the blog generates spaces between paragraphs. It is annoying. And eats into my time, as I “correct” something I didn’t do. Everything feels delayed. There’s a tumble dryer rumbling away, long after it should be. That’s an afternoon thing, not an early evening thing. Every piece of routine is moveable. But things must be done, eventually. There. I’ve blogged.

 

TWO CARERS WALK INTO A BAR.

Every day, two carers walk in here in the morning. Two walk in at night. Sometimes, one of those carers is pulling in extra work. That carer comes in twice a day. Rare, but it happens. Carers wish me good morning at night and good night in the morning.
   They work on a four-day cycle, and can almost always tell you which day it is. Day One. But they struggle to know that it is Tuesday. Days blur. Four on and four off. Barring illness, holidays, or nonsensical last-minute redeployment to another part of the system, that is.
   You meet everyone in the system eventually. Regulars are regulars until everything changes. Now and again, someone – who moved away through the different layers of the system – someone comes back. Not in an undead kind of way. Night of the Living Carers.
   Anyway. One familiar ex-regular comes back in. She’s known as the Poster Girl for Overtime. If she’s asked, she’ll do it. And, of course, she’s in the house to cover for someone else. Taking a bit of overtime. I once joked that she’d end up covering her own shift as overtime.
   Oh, how we laughed.
   And then she declared a holiday. Except that she turned up on her day off and covered her own shift. So my joke was a prediction just waiting to be fulfilled. Well, anyway, she turned up and just wanted to know. Someone gave her a book on dementia. She wondered if I’d written it, knowing that the book I’d written was done under another identity. To protect my mother’s privacy, you understand.
   I explained the situation. No. Okay, but could the carer have the details of my book? Just out of curiosity. Certainly. With the warning. Having met me, interacted with me, the carer is barred from reviewing the book. Other than that, we’re okay.
   Well now the news is travelling around the carer circuit. It wasn’t, before. Carers knew I’d written a book on dementia, but no one asked for the details. Some of them went looking for me on Amazon, generally, but I pointed out that bit about protecting the identity of someone who is at the most vulnerable state you can have in life.
   I have responsibilities way beyond ordering pills and grinding them.
   Now the thing about the book…and I had to explain this…is that it isn’t about dementia care. It’s about the last bus journey I take before I must become a carer. After that, I added blog posts to the text. And I’ve kept blogging since. The thing about blogging since is that I’ve discussed changes as they happened.
   The need for more mobility equipment. Changes to carer routines. Having a carer, one at a time, to get us through the day. The gradual shift in items of furniture. Back-up systems. More carers. Two carers at a time, twice a day. And, on occasion, when blogging, I end up talking vaguely about the care team and things we all have to deal with.
   What’s the upshot of that recent visit by the ex-regular? Now the carers are starting to talk about getting this book. Which will lead them to the blog. Some of them will start reading the blog: some won’t. It’s a monthly blog, and I write a brief piece on a topic…
   That book was from 2017. In the days since? Short blog chats. Twelve a year, mostly. And quite easy to wade through. Regular binge readers will know I repeat myself. December brings talk of Christmas trees. I get the flamethrower out for the weeds in the summer. And so on.
   Here and there, I mention the carers. So now I’ll have the carers reading these blog posts and recognising a hell of a lot. The actual Christmas tree, for example. Or the way the garden is laid out. One carer is reading the book. And told me about the fireplace and its annoying remote control. That’s from the start of the book.
   I could see the dusty remote out of the corner of my eye. So I dusted it down and showed it to the carer in a surreal moment. And the carer, eventually reading this blog post, will experience another surreal moment. It’s all very self-referential. Obviously, I had to blog about it.
   But I had to do more than that. I remembered a theme in the book: one of updating hyperlinks to the outside world. Time to go back in and check those hyperlinks again. I do this, from time to bleary time. And so I found a few dead links again. Totally utterly dead links.
   I typed my way around them, and republished the book today. Also, there was a glitch that crept into the blurb. A change in formatting smashed all of the separate paragraphs into one block of text.
   Amazon rarely tramples over those details. Circumstances beyond my control. I reached for the toolbox, and I knocked the rust off. At least fixing the glitch lies within my power.
   So there are blogs about having two fridges. Which the carers can see, when they go into the kitchen. I blog about the door chime that goes off when they walk in. This is the place where they can go to the toilet in comfort. You’d think a heated toilet in winter would be standard, in the world of caring for people.
   Apparently not. I provide a rare service. The carers come in and tell me I should charge admission to the toilet facilities. I’d add a coin slot, but these days we’re so used to the electronic transfer of funds that no one would be able to pay. So the toilet remains, mercifully, free at the point of use. Which is the whole point.
   I worked my way through the book, page by page, checking, double-checking, and treble-checking. I was advised of dozens of potential spelling errors. Amazon told me so. I should say that bit about potential spelling errors another way. Patenshul. For I scatter Scottish words and variant spellings throughout the book.
   When writing a book in that way, I end up adding Broad Scots™ to the internal dictionary. But I have to go round the houses a second time inside the Amazon Kindle system, backstage.
   The hyperlinks that failed? I removed them. And the ones that worked? Surprised me that they worked. Regional words were ticked on a list and I had zero errors by the end of it. Then, after confessing that I never used artificial intelligence – only my own, and that fuelled by coffee – I hit the button to update the publication.
   Long story short…the updated book is officially updated. I shouldn’t have to check it for hyperlinks…oh, for a long time. Here I am, blogging about blogging, writing about writing, giving you an update on updates. It’s all circling around the campfire, trying to find the best place to get a decent heat out of the blast without being fried.
   It’s been a time of checking internal hyperlinks that never give me bother, and scorching a few external hyperlinks that simply cannot be saved. Yes, I gave myself more work to do. And I thought many of those external pathways would fall to dust over time. But that didn’t bother me. It’s healthy to return to the work, periodically, and make sure it is still there. Accessible. Functioning.
   This time around, I had to drive a stake through several vampiric hyperlinks. There. I’m never coming back to them. They are done. Twitter links that were Twitter links when Twitter was still Twitter. It is still Twitter. And it is always going to be Twitter. But it has had the life knifed out of it.
   Some hyperlinks lead to these blog posts, and a few photographic images that might appeal to readers. Give them a visual hint or two, concerning the whole journey. One day the world will end. Maybe the hyperlinks will be out in the depths of space by then, and only robot astronauts will survive to read the blog through the book.
   I was going to write about the government, ripping off carers, or potentially ripping us off, but that can wait a month. Then, in July, I can look back and talk about the first half of the year. And of being ripped off by the government in that first half.
   Oh, we’re better off now. If you ignore the bit about being ripped off. There’s still hope. The government may pay out a compensatory fee in the second half of this caring game. I won’t hold my breath for a month. Something tells me I already know how the next blog post will go. Still, I could be pleasantly surprised.
   I won’t be, though.
   Two carers never walked into a bar. The blog title was misleading. If any carers walk into a bar, it’s off-duty. Doesn’t stop some of them putting in requests for alcoholic drinks while I’m mixing up frothy strawberry milkshakes. Oh, how we laugh.

 

DEMENTIA CARE: DOING MAINTENANCE TO GET MORE MAINTENACE DONE.

 

In the bathroom there’s an extractor fan. It stopped working. I put in a request for maintenance. This fan was fixed once before, over its long life. Never been replaced. These days, a long life for an electrical gadget is anything over ten years in operation.
   Long enough for the fan to become extinct. The electrician explained that they don’t support those fans any longer. There are now better fans available. He’d have to order a whole fan, disconnect the old power arrangement, and hook up new wiring to the power.
   In the loft.
   He’d need loft access.
   Oh.
   Now the loft is a place I store things in. For a time. Items go out of the way until I can arrange for removal. Maybe I’ll bring an item back down from the loft and use it. Or I will transfer storage from the loft to the garden hut. Beyond those options, I can send a thing to charity or to one of several bins.
   In the past few days I’ve put stuff back in action, recycled paper, shredded paper, sent stuff to metal and glass recycling, and put things in the final bin. The one that doesn’t recycle anything. Why? I must arrange loft access for the electrician.
   At one time, there was no great loft access to the place he wanted to go to. A section of the loft just above the bathroom. When the water heating system was upgraded, there was no more need for the ancient plastic water tank perched on a wooden frame inside the loft, just off-centre, past the hatch.
   What did that mean? It meant removal of the water tank. The framework is still partly in place. Pipes that used to work around the water tank were capped off if no longer needed. One pipe snaked up the side of the wooden frame and slithered back down again.
   This is why I’ve preserved the remnants of the wooden frame. If I am working in the loft and trip at that point, the wooden frame stops an accident from turning into a disaster. It shields the snaky pipe. With the water tank a mere memory, that opened up the loft. Until that revamp, you could only access the other side. And the other side was where everything was stored.
   I now have both sides available. Which means…I’ve blocked off easy access to the space over the bathroom by storing things there. So my maintenance task was to clear up the main loft area, pack things more neatly, more efficiently, and then transfer all the other stored items to that side.
   Then, with everything stored in the old area where everything used to be stored anyway, the electrician will have a clear run to the cable that comes up from the bathroom fan he’ll install. He’ll sort out the power flow. That reminds me. I must empty the cupboard downstairs, so he can have access to the fusebox.
   There’s been more to it than that. I’ve always kept this narrow alley available through the last of the wooden frame. But that’s not good enough for the electrician. I decided I’d knock the framework back down to the minimum required to protect the snaky pipe, and I’d make the improvised flooring more secure while I went about this.
   Granted, clearing a path for the electrician is the same as clearing a path for myself. So everyone benefits from the idea. With all the stuff in the loft stored to one side, I’ll move the lights around. I keep lights on hooks, leading back to an extension hub. Replaced the old hub with a newer one, for practical reasons. So making a few temporary changes won’t be a problem.
   I’ve been given the date of execution of the repair. And I am rationing out the work on a daily basis, waiting until early evening so the carers are out of the way and there aren’t any more deliveries, calls from clinics, or visits by other healthcare professionals.
   Clearing or rearranging a loft is best done all at once or in stages. I’d do this all at once…but I am a carer. And you have to break almost everything into manageable pieces. The loft is one of the most dangerous areas in a house. Basically, inside the hatch, you face all the fun of another dangerous place – the top of the stairs – without the stairs.
   Instead there’s a ladder. So any fall is direct.
   I’ve rarely tumbled down stairs. Usually, I fall and slide down a few steps, coming to a halt. Even a full slide down the length of the stairs would be annoying. But the danger of tumbling the length of the stairs is present. Never mind all the times I was fine. It’s the one time that fucks you up that really fucks you up.
   Realistically, I don’t think there’s anything worth grabbing if I slip and fall out of the hatch. I’d bounce off the ladder, using my feet as awkward shock-absorbers. Any attempt to grab the ladder would result, clearly, in shredding my skin on the aluminium. All those awkward angles and ladder fixtures. Just waiting to rip me silly.
   Potentially, the stairs are almost the worst problem. And the loft. I still rate the kitchen the most dangerous part of the house. That’s where the gas cooker is. A recent visit by an engineer took us into talk of the last upgrade to the gas supply, and the real reason for the changes. Modernisation. That wasn’t it. Modernisation was an excuse for quickly fixing a flaw perceived in the old design.
   I remember how it was all arranged, and what the engineer said to me matched up to what was done. He just explained the dangerous part out loud. It was played out as modernisation so as not to scare anyone. They didn’t want to cause a panic.
   That means. What does that mean? It means the gas engineers didn’t want everyone jumping to the head of the queue to have their gas fixed ahead of everyone else jumping to the head of the queue. Instead, it was a case of waiting your turn and hoping your house didn’t blow up in the meantime.
   We were all fine. This new piece of maintenance should be easy for the electrician. I’ll remove a mirror from the bathroom so it doesn’t get in the way of progress. By the time he arrives, the loft will be ready for him. The only dangers are…tripping and falling out of the hatch…tripping and falling through into a room below, and tripping and falling catastrophically, either rupturing a water pipe or piercing a live electrical cable.
   I’ve never fallen from the hatch, crashed into a room, ruptured a pipe or pierced a cable. And I’m not in the mood to do any of those things now, or make things easier for the electrician to do those things now. Little mess and no fuss. No mess, preferably.
   The most important thing is to remember to have the ladder and hatch ready, and switch on the lights up in the loft. I handle that from down here. Being a carer, I’m always looking at that loft and ways to make it safer. There’s one awkward area of the roof with a bathroom sponge fixed to it, so I won’t bump my head if I forget to duck.
   That loft is at its safest, now. Cluttered. This is the nature of using it for temporary storage. Items keep moving around. The improvised floorspace is its own massive loft shelf. If I pack everything away efficiently, I’ll have no trouble on this job. It’ll be harder to remove things.
   I’ll just have to go with the time-tested rule. Oh for a life, for a life, oh.
   LI-FO. That’s LAST IN – FIRST OUT. Going by this saying…yes…sometimes it is better to work in small stages, when up in the loft. There’s a fair bit of rearranging before you move anything down to the floor below. Often, it is best to start out in the garden, at the hut, when planning loft improvements.
   I’ve moved stuff. Hammered nails in. Hauled nails out. Reached for the saw. I keep a saw in the loft, along with other tools, to save traipsing back and forth. For safety, I have one eye on the other eye keeping an eye on things. There’s a phone at my hip if I must call for help. First Aid is nearby.
   And I have a clearer path to the ladder, from downstairs. Another mini-adventure. I resisted putting a bookcase next to the area under the hatch. But I calculated that a slim bookcase wouldn’t stand in the way of the ladder. A tall bookcase. And easy for me to navigate my way by, thanks to familiarity.
   But the electrician isn’t familiar with the set-up. So I performed an obvious calculation. I could swap the tall thin bookcase for a short thin bookcase. After finding space to pile books when I offloaded them, I made the switchover. Much safer for me, in hindsight. Hindsight is what I have to use when climbing down the ladder. It’s just how the space is arranged.