DEMENTIA CARE: DEMENTIA IS WORSE THAN CANCER, UNLESS...

Twice, people came to me and told me dementia was worse than cancer. The friend who said this to me wasn’t aware that my mother had both. So. To clear this up. Dementia is worse than cancer, unless the dementia sufferer also has cancer. As my friend was visiting to tell me his mother now had dementia, I decided not to mention the cancer stuff.
   The second person who told me dementia is worse than cancer was the doctor who visited this week. She, being the doctor, knew about the cancer. Going back to the head of the dementia department, a man who was absent-minded in my presence and had the sense to laugh it off, his observation was the keenest.
   It’s not the dementia, but the underlying health conditions.
   They are multiplied in strength by the dementia itself. When the patient can only tell you they feel ill, that’s not a lot to go on. And when they can’t even vocalise that much, it’s far worse. Illness descended. An unexpected drop in blood pressure that led to unconsciousness.
   This isn’t easy to spot if the patient is snoozing in the chair. That chair is a comfy chair. Designed to greatly reduce your chances of falling out of the chair. I’d dished out a cup of milk two hours before. And I’d checked in just one hour before. At the top of the hour, the carers came in…
   I did the usual wakey-wakey routine. If you nod off in front of the television in a chair that keeps you safe, you are in the best place to nod off. For safety, there’s an airline-style travel pillow to protect the neck. I removed that and my mother’s head flopped.
   Not good. I lifted her arms. She had the strength of wet noodles. A quick attempt to prod her awake. Nothing. This was an ambulance call. You may have experienced the next bit many a time, but for me it was a strange shock. More shocking than dealing with an unresponsive woman who couldn’t signal what was wrong even if awake.
   I was put in a queue for an ambulance.
   Granted, all the emergency service calls I’ve made have been on my mother’s behalf when she’s passed out. Except once, when I was using the advice service just below the level of an emergency…and the woman on the other end of the line ordered an ambulance for us. Every time, I was put through immediately.
   Maybe this has been going on for a long time. And I’ve just never experienced the delay in getting through. A string of coincidences, then. Time of week is a factor. You’d think mid-week, things would calm down. But no. The end result was taking advice from a flustered person on the other end of the line. More bothered about the incident than I was.
   The phone went dead. Not a sound from it. As if switched off. But the phone lurched to life. We had her on the floor, and she started to recover. This is the way of things. Now, you can’t be sure. When she was more mobile, the fainting happened. She grew less mobile, and the chances of this fainting thing happening again went down. You can never be sure that’s all this is. That’s why you call.
   We’d had the advice. No ambulance has been sent. Someone will call you. The carers had to go. They’d come back for a follow-up. I was left waiting. A nurse materialised, telephonically. She’d have an ambulance show up. I should expect to wait two hours. Naturally, if I believed the situation was deteriorating, I should use the emergency services again.
   It was a long wait. The carers returned. No medical opinion yet. On advice from the out-of-hours service, they couldn’t move her from the floor without a medical view. This is sound advice in the event of a fall. I don’t think the carers would have been given that advice during the day, having been the ones who moved her to the floor. The difference between the day office and the night office is like, well, you see where I am going with that.
   Luckily, I had the community alert alarm box available. The plan was to make her as comfortable as possible. She had plenty of padding underneath her. I grabbed a meal. There were several emergency coffees. I stayed with her and made things as easy to deal with as possible. Now is not the time for complex plans.
   The nurse materialised. Still no ambulance? No. Did the carers come back? Yes. Did they lift her to the bed? No. She can’t be on the floor for more than two hours. The nurse switched me to a priority ambulance. This could still take up to two hours. I guess this is a standard measurement in that line of work.
   Never waited that long for an ambulance, either, come to think of it. Clearly, strong signs of a heart attack would generate a more rapid response. The ambulance crew arrived not too long after the nurse called. Every ambulance crew in attendance is fantastic. You don’t want them at your door. But if you need their help, they are as helpful as anyone could be…in the history of EVER.
   As before, she’d recovered enough to show she was okay. I’d said to the nurse, on the second call, that I didn’t mind the wait. There’s always someone somewhere far worse off than you are. She agreed. I don’t see the point in getting angry at a delay.
   This goes for delayed carers, who may be dealing with an ambulance case before they get to me. Being angry isn’t helpful when the ambulance crew reaches you. You must be coherent and organised enough to provide assistance on behalf of a woman who is still struggling with the idea of being conscious.
   All the tests were tested. The ambulance crewmembers were impressed by the level of organisation around me, as I explained this caring gadget or that medical device they’d never seen before. They’d be a while writing up their report. Could they hand that back in? Yes, I’d have another bonus coffee and an emergency biscuit.
   Next day the doctor arrived and marvelled at a few gadgets she’d never seen before. The upshot of this visit? A rather pointless pill didn’t really need to be on the prescription list. It was the hardest pill to administer, so I was glad to see the back of it.
   We reached that point about being unable to explain what was wrong. All I could say was this. The unconscious episode lasted anywhere from a minute to an hour. Hourly checks are good. If there’s greater risk, I go to check every fifteen minutes. Usually that’s while clearing rooms of rubbish, tidying, and cleaning things. It is absolutely amazing the amount of crap you can tidy up in the kitchen if you know you only have fifteen minutes to do it in.
   What was the cause? Possibly the heat. Maybe the milk was off. You ditch the whole bottle anyway, no matter the lack of clues. I’d done almost everything to keep her cool during the warmer weather. The house was the coolest place on the carer run. What else are we looking at? Being old. And being frail. The top advice is always the same…
   Never changes. Ready?
   Don’t get ill.
   Never be old.
   Don’t get ill at the weekend.
   Never be old and ill at the weekend.
   The mid-week blockage in the service was a surprise to me. That ambulance crew told me everyone was at the hospital. Gary Oldman levels of EVERYONE! Just absolutely everyone. Another care shift comes along and they said everyone was at the hospital two nights in a row, as they’d had information.
   Typically, there was another pressure drop with dramatic results. The air pressure dropped, clouds formed, and rain blessed the streets for the first time in a long time. That’s the only drop in pressure we want, to defang the summer. Now it is time to look back on all this as I publish another month’s blog post…
   All is well. Recovery is good. We hit another bump in the road and dealt with it. Sadly, I’m aware of the possibility of a queue forming for ambulances. I know there are elderly people in their own homes, receiving care, who keep the heating on in summer. Your skin grows sensitive as you age, and you feel the cold more easily. I wonder how many people living in sauna conditions were carted off to hospital that night.
   At some point someone, it’s a mystery, don’t know, can’t say, could be anyone, I have a long list of suspects, someone who is capable of changing the battery in the hoist…the same someone who is capable of performing a full factory reset on the hoist…someone who is not insured or trained to operate the hoist…
   That uncertain unknown mysterious someone pressed up, over, and down buttons on the hoist. There were very good reasons, all related to insurance, why various parties could not operate the hoist. I don’t know who that unsung hero was. He just walked into town, shot the bad guys, holstered his six-shooter, and rode into the sunset. Thank you, Mysterious Stranger. Can’t tell you anything about that. But I can tell you this much, for what it is worth. He had a bonus fucking coffee when it was all over.
   And then, a day later, I received yet another summoning letter, asking me to perform jury duty. The letter took four days to arrive, and materialised so late in the afternoon that my e-mail response didn’t slide under the wire at the last second. I had to wait the weekend to find out if I’d been granted excusal.
   They cannot guarantee anyone the excusal. Monday morning. The office opened. I was excused. Then the back door started sticking when opened or closed. I had an inspector out in no time. Good news. Getting a new back door. Bad news. Need a new back door. Good news. The door inspector measured the door a lot. Bad news. The door inspector measured the door a lot.
   Good news. Those doors last forever. Bad news. Those doors last forever. What does this all mean? The door sticks. Wear and tear will break the seal eventually. A year, at the most. The doors last a long time. Meaning…they don’t really make those doors any longer.
   If there’s a door that fits, a new door, in stock, they’ll fit it within three months. And if they have to make one, it’ll be six months. So. The repair could take half a year…but the old door won’t wear out until a year goes by. Result. I’ll take it.
   This will go quicker if people haven’t picked up doors. There’s an appointment. Arranged ahead of time. There are three chances. Then the door isn’t delivered. The inspector told me they visit three times. I am the Door of Christmas Past. But people don’t answer the door to get their new door delivered. And…
   If there’s one of these lost doors at the warehouse, then I’m in luck. New door inside three months. Stuck in the queue. No door available? Stuck in the queue for six months. I’m feverish with excitement at the prospect of a door appointment. Hope it fits when it arrives.
   Until then, I am to use Fairy Liquid or a suitable supermarket off-brand equivalent, to keep the door from juddering. It’s been one of those weeks. Time for a bonus coffee. For someone. A Mysterious Stranger.

 

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.