DEMENTIA CARE: THE RANDOMNESS OF CARING.

Every routine has its own self-destruct button. You apply a level of routine to the randomness of dementia care. That application is a coat of varnish specially designed to evaporate on contact with the world.
   You dive back into randomness when you are forced to hit the self-destruct button. You were doing something, and it was computerised. Very important. But now, at an odd time, the bell chimes to let you know someone walked in through the door.
   There are no odd times for the care team to walk in. Unless one of them got up at 3.00 in the morning, sleepwalked to your house, and triggered the alarm. This has yet to happen.
   Nurse visits are almost always by appointment. The appointment occurs from 9.00 in the morning until 5.00 in the afternoon. Recently, there was an unannounced nursing visit, to take blood samples, at 9.00 in the morning.
   At least I didn’t have to wait in all day for it. This vampire only worked in the mornings. So it was a 9.00 through to 12.00 visit. That’s how the vampires get you. They tell you they work mornings so you believe they are alive.
   “We humans like to get up early in the morning.”
   Always treat that sort of talk with suspicion. This is how the aliens infiltrate. They pretend to be vampires pretending to be humans. No one suspects the real conspiracy hidden inside the other real conspiracy.
   My morning routine involves a bit of start-up caring followed immediately by a coffee. This coffee happens between 8.30 and 9.00 when almost no one can interrupt me. Occasionally, maintenance work will happen from 8.00 onward. But I get word of that, well in advance.
   There I was, coffee over, arranging computer-based caring, when the bell tolled and told me an intruder had just entered the property. The care team rarely reaches me at 9.30. Couldn’t reach me any earlier, without a special request going through.
   Those special requests were in the pre-Covid days. Be ready for Patient Transport to a hospital. Or have everything out of the way for the Daycare mini-bus. Those routines faded. Who would walk in at 9.00 in the morning?
   The blood sampler. This cheery chatty vampire never phones ahead. On a different system. Or marches to the beat of a different drum. Most likely a tuba. Comes from another planet. Fills in for the regulars.
   We engaged in slow arm-wrestling with the cared-for, and failed to get any blood out. I moved around to the other side of the bed and engaged in even more arm-wrestling, while the vampire attacked the problem from a new angle.
   Blood flowed freely. We marched in a roundabout way to the bin, the one that didn’t contain recyclable items, and our parade signalled the end of the matter. Either there’d be results in a week, or the results wouldn’t show any change and there’d be no need to send results.
   Somewhere along the way I received text messages telling me all the doctors are off sick and could I please not be ill today. This day, specifically. Fuck this day, in particular. Luckily, I am not ill. I don’t know how ill the doctors are.
   A lot of physicians, healing themselves that day, I guess. Other unexpected notes arrive, with deliveries of pills. A receipt is attached to the bag. The pharmacy has run out of milkshakes. Again. They owe us milkshakes. And they’ve owed us milkshakes for two months, now.
   I bought a batch of spares off Amazon. Sometimes, when supply issues hit…the company making the milkshakes gets replaced. And suddenly you have all the milkshakes again. Just in a slight variation of the standard flavouring. My problem is wondering how long to wait for non-existent milkshakes.
   Do I wait? Two weeks, and the pharmacy catches up and makes a delivery. Maybe the pharmacy never catches up. So it’s a month without. We made it through without milkshakes for a month. Other milk products are in the bag, and they provide sustenance. The extra calories are available.
   But as soon as a second note came, attached to a new bag of pills, that was it. Time to abandon routine, hit the self-destruct, and buy the identical milkshakes from Amazon. They weren’t short of milkshakes.
   Once in eternity Amazon will cancel an order. The third-party vendor ran away with the fiver and is now on the run for the rest of his life. Amazon carries the can for that. Your money is refunded. Then you are forced to make alternative arrangements.
   Never mind all that. Amazon had identical milkshakes and milkshakes arrived. Soon enough, it’ll be time to order another receipt for missing milkshakes. I mean…soon enough it’ll be time to order more milkshakes from the pharmacy.
   I hope if they don’t have them that they don’t have them in strawberry. See if they don’t have them in chocolate, we’ll all be sorely disappointed.
   I am still waiting for the repair to happen to that door. This involves removing the entire door. Bits are falling off the underside, and I don’t see the winter weather doing it any favours. As long as I keep it maintained, using the temporary fix of detergent, I’ll be okay.
   Not that I distrust the door. I’m sure that one slug made it to the kitchen counter by other means. Used the key, like a normal slug would. Didn’t come through the disintegrating underside of the door. Jangled the keys then avoided the pressure plate for the bell.
   Wildlife randomly alters your routine, pressing the self-destruct on your behalf. It’s been a long time since I had to escort a wasp from the premises, with the warning not to come back or its kneecaps would never play the piano again. No wasp action, this time.
   The tap-tap-tapping of a tiny moth, playing a drum routine on a light, loud enough to rival John Bonham at his most feverish, plays havoc with whatever the fuck you were doing at the time. The cure is the Spider Glass. Yes, I catch spiders in that, and send them to the garden.
   I’ve also caught moths in it. And the other day, I trapped a particularly angry buzzy fly. Slugs go out on a scrap of cardboard. No glass for them. I haven’t had a mass of ants in here since I cordoned the kitchen with vinegar on the floor. Ants learned to look elsewhere for snacks.
   For weeks I knew there was a tiny spider in here somewhere. One of those almost non-existent fuckers. They leave a motorway made of webbing behind them, trailing back three hundred miles. You always work from the middle of the web to the wrong end…the start. You find nothing.
   Well, I was looking for something else entirely and found the wee bastard taking a break from it all. Hiding down low, clinging to the underside of a shelf. The wee fucker moved fast when I sprang the trap, but I moved faster.
   All the beasties went back to the garden and I returned to shattered routines. Discovering a loose cable over where the carers went back and forth, I rescued the hammer from a life of tedium and went to work adding more fixings to the wall. Once I found the box full of those fixings, of course. That was a detour within a side-mission.
   Animal rescue. Household maintenance. The unannounced arrival of a vampire. And the announced lack of arrival of those milkshakes. These things wrecked routines. Luckily, I had routines in place to fix broken moments.
   And I consumed a great deal of coffee. So much coffee that I’ve laid on an extra coffee supply run just for that and some more toilet roll. At least it is all lightweight. August evaporated. The weather finally turned.
   Night suddenly falls hours earlier, doing away with all those fake night skies at midnight. There are hints of the chill to come on the odd wind gust. I have salt supplies in for frost. And I’ll have cans of stew in the kitchen before long.
   Goodbye August. Farewell meteorological summer.
   Here’s September, instantly, after a year that blinked itself away just to reach this point. True, September can turn on the heat. We’ll see. But it is a month known for its charm, and its charm lies in cooling.
   I’m pretty much done trimming the tree for the year. A last burst of leafery before slowing down. The tree, not me. This blog post wasn’t about anything, except arranging a blog post on the first of the month. Mission accomplished.
   Interrupted by text messages. The coffee supply run is on. It is happening. Confirmed. Also confirmed, for mid-October, the new door. At any old time, on the day, from 8.00 in the morning at the earliest. At least it’ll be done before December. And I’ll have coffee laid on for the occasion.
   I walked into the garden to bring the bin in. Gentle autumn rain fell from welcoming grey skies. The searing blue of summer is done.

 

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.