DEMENTIA CARE: MAINTENANCE WORKERS.

All of the maintenance was arranged for October. Even the maintenance conducted in September. The community alert was going to receive its annual maintenance on the same day as the new door went in.
   But that was a clerical error, and the alarm guy turned up in September to explain a mistake was made in the office. October appointments were really September appointments in disguise. Knowing the power would be off in October for some gas and electricity maintenance work, I mentioned this to the alarm guy. He gave me a number to call on the day.
   That way, the alarm guy wouldn’t show up at the door to check out the loss of signal. If I phoned the office and explained why the power was off, it saved him a journey. Reorganisation of the job would also save his making a return maintenance trip in a year. Annual alarm maintenance is now going to be every eighteen months.
   I did a fair spot of maintenance myself over the past week as I anticipated the arrival of various technical bods. Hardly a day went by without my adjustment of a door, a drawer, something under the sink, a thing that pinged off the fridge, or, sometimes, even the tools themselves.
   First to arrive was the gas guy. He’d have the electric guy come in as well. Gas and electricity meters will now be upgraded every decade. We were overdue for an overhaul. Each meter took an hour to remove and replace.
   The machines may be standardised, and many houses are supposedly the same, but every locale is different. I’d made the phone call. When the electricity was switched off, we could all hear the alert telling us the power supply was disrupted. Then restored. And then disrupted again. Finally, restored. No one came out to ask why, so the phone call to the office worked.
   I wandered the upstairs portions of the house with a torch in my hand as I went about various daily duties. Just like a murder mystery in a mansion during a storm. Without the storm. And no mansion, it’s true. Also, no one died.
   The electricity guy decided to be cautious and he switched the electricity off a second time. Better safe than sorry. That was me to him. He agreed wholeheartedly. There were a few glitches based on the standardised house not being as standardised as you’d expect…which is something you should totally expect.
   Then they were done. Two hours of disruption. Good for ten years. I had a new gadget, reading off gas and electricity in the kitchen. It would take a few days to filter through the readings. Now the meters provide even more regular data straight to the alien mothership on the dark side of the moon.
   While casually reading about smart meters I discovered the Smart Meter Conspiracy Enthusiasts. Like Flat Earthers, they don’t trouble my sleep. Aren’t Flat Earthers great? I love a well-rounded conspiracy as much as the next person.
   You have to be careful not to disrespect Flat Earthers, though. They do have a global reach. Flat Earthers come from all around the world to attend the big conventions. Even so, that view of theirs still falls into a niche sphere. Don’t enter into debate with them. You’ll just end up revolving around circular arguments.
   Can’t be bothered with those Flat Mooners. They are the worst.
   With the alert well out of the way and the gas and electricity seen to, al I had to do was discover loads of things in need of fixing around the house. I’d do this very scientifically by opening a door or reaching for a utensil, only to be disappointed with the end results.
   Now I was the maintenance worker. Part of the maintenance was all about the new door. I had to clear the hall. For safety, I took away the pictures hanging there. This was the memory gallery for my mother. She would have a carer escort her through the hall to the kitchen and around to the stairs.
   This longer route up to the bath offered her the chance to talk about places she’d been to. And she did talk. Mobility, loss of strength in the knees, put paid to that taxing trek. But the pictures remained. I moved a few from the kitchen through to the main room, to keep the talking-points going.
   Taking pictures out of the hall reminded me of the difficulty I had in putting them up in the first place. Endless measurements. First, find a poster service that would handle the photos. Easy. Next, match the poster to a clear frame. Focus attention on the pictures. Easy.
   Print them up, frame them up…easy. Hang them up. Fucking hell. Fiddly. I created a themed walk. And it worked. This time around, hanging them didn’t involve measuring the walls up and knocking nails in. But I wasn’t looking forward to the prospect.
   I uncovered webbing. No spiders. They hadn’t lingered. I dismantled the mat alarm and I undid the wiring. Motion-sensor lights had to come out of the way. I switched the radiator off. It wasn’t on. But it had to go fully off at the dial.
   Carpet runners. Ancient. Beyond time. Difficult to remove. Then I folded the carpet up and around the corner. This seemed to take all day and all night. Stop. Check a thing. No damage. Carry on.
   I’d placed a sign on the door, to say where you are going before leaving the house. That was there when there was no door alarm. Immobility brings its own challenges. But it takes away the business of wandering off into the streets when you have no concentration.
   So. I finally removed the sign on the inside of the door. The blue goo holding it there was soft. It just wouldn’t come away clean. I had to use older harder blue goo to attract it. Eventually, I removed all traces of the blue goo from that door. (If not entirely from my fingers.)
   With the carers gone at night, I locked the door for the last time. I’d set the alarm early so I’d have my coffee well before the arrival of the workman. Next morning, I unlocked the door for the last time.
   A van arrived and dropped the new door off. The delivery guy sat it out of the way, over there. There’s a mat on the step. I moved that out of the way, over there. Exactly where the door would end up, of course.
   Then the workman arrived. He checks to see if you are home so that he can start. The door does need to be open for that. We covered a few fine details, and I left him to it. Later, he let the care team in. They weren’t used to coming in to silence. There was no mat to give off the jangled alarm of the bells.
   So they shouted out to me when they were finished. And away they went. After just over three hours, the door was in place. It looked very clean. I was warned not to wash any of the plastic surround. Just let the glue set. Okay.
   I was given a tour of the mechanism. The old door had a proper keyhole. You could see through it to the outside. No more. There wasn’t even a keyhole. Just a thumb latch. You don’t scramble for your keys in a fire. Instead, you just turn the latch to unlock from the inside.
   So I really had locked and unlocked the door from inside the hall, with a key, for the last time. This has changed morning routine. I start caring with pills I carry through from the kitchen. On the way, I jangle the keys out and unlock the door. That’s one thing I need never do again.
   What else changed? There is light. The old door had two tiny windows high up. Monks in their cells had access to greater illumination. Now, from the kitchen, it looks as though the door must be open with all the light streaming through. When you reach the corner, you see the door is shut.
   Takes a bit of getting used to. Did I change anything? Yes. The carpet runners and the carpet are more or less the same. Radiator still radiates. But I took this chance to rearrange the wiring for the mat and the alarm.
   The wire goes from the mat up the wall, over the toilet door, and across the hall ceiling, down the wall, and to the socket there. I tidied up the cabling a bit. This was long and involved. But the door, which is very snug and shiny and new, shouldn’t be replaced for an absolute age. So I won’t be rewiring every few weeks.
   It took a few days for the first cobweb to span the door. And not at the top. Maybe the freshness is keeping the last of the feisty spiders at bay. There is no number on the outside of the door. It is textured. So I won’t be adding stickers to the surface, the way I did with the bins. Delivery drivers are almost always on satellite navigation. Or they have it and make educated guesses. These guys never read the instruction manual.
   I was handed three keys. One is now inside the keysafe on the outside wall. Another is in my pocket. The third is spare. In a drawer for now.
  The front door has a handle that lifts up the way. Now, finally, the back door operates in the same fashion. This places a hook inside the frame, keeping the door secure against severe winds. I’ve just received the door in time for worsening weather. There was a chance I’d have to wait until mid-January for this replacement.
   With the door in place and the workman away, I set to business installing the mat. At the very bottom of the whole assembly, the new door frame reduced the area of step available. I set to work with a measuring tape and a ruler. Cut a bit here. Trim a bit there. We were back in business.
   You wouldn’t care about any of this if you weren’t a carer. Being a carer, though, you plan a lot around the event. You work out which team is going to be in on that day. The door guy is there in the morning or the afternoon.
   The morning squad is told in advance. Leading up to the day itself, I clear the front hall in case the carers knock at the front door. I’d put all the pictures from the back hall into the front hall, and realised that might cause an obstruction. The front door is hardly used, so it didn’t bother me. But it could have bothered the carers coming in.
   Carpets. Doors. Fittings. Fixtures. Tools. Keep them available. Not inside the cupboard that’s going to be blocked off by the raised carpet. It’s all easy stuff. But it comes with that extra layer of…wait, will this interrupt caring routine? Answer. Of course it will. And that’s why I planned ahead. The whole thing went smoothly.
   And the door? Well. It is just a door. What did I expect? I expect…the door to last a long time. It keeps the weather out. And it lets the sunlight in, warming the hall. Taking the chill off autumn. I imagine the hall will be like an oven in summer.

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.