DEMENTIA CARE: NORA AND JOHN.

 I could’ve written JOHN LYDON or JOHNNY ROTTEN. If I do something like that, I am legally obliged to add two words to the title: CLICKBAIT STORY. No. This isn’t a Johnny Rotten story. It’s a story of Nora, who married John.
   Decades go by. They are still married. Nora develops Alzheimer’s. John does what he can. It isn’t over yet, but we know it doesn’t end well. If you are standing there wondering whether or not to be a carer, you must understand that as you flip the coin. Are you full-on in or are you going to walk all the way out?

It never ends well. Though it could end quickly.

I knew that going in. Everything was unreal, in terms of my mother’s behaviour. And everything about my attitude was real, in terms of realising what I’d have to do. When it came to flipping the coin, choosing one path or the other, I left the coin in my pocket and just got the fuck on with caring.

Here I am, six or seven years into being a dementia carer, and it all went as I’d expected.

Obviously, 2020 was such a shitty time that I’m in two minds about qualifying it as an actual year. I’m not the only one. At least two other people I spoke to had to pause and think over that 2020 problem. Do we count that one? Can we cash it in later, and regain the time in dribs and drabs when we need to?
   I’m seven years in, I’ve decided, and I have a carer’s view of being a carer. What a fucking shocker. I watch a news clip of a carer-related story. There’s a view of the bathroom. If you aren’t a carer, you see a bathroom.
   But if you are a carer, you see this brand of liquid soap or that arrangement of multicoloured towels. And you know you are staring at a house with a dementia sufferer in there. The carer’s job is to limit the suffering. And to do all the other things.
   That brand of liquid soap is the one all the daily carers know by name. They recommend it. If you replace towels regularly, how do you know? Make them all bright colours. Different colours. Yes, there were enough white towels to kit out a fleet with sails. But sameness makes it harder to spot the difference as you cycle through laundry.
   At first, that’s for the cared-for, still engaged in laundry-like activity. Later, it’s for yourself. You know what day of the week it is, based on Towel Patrol, or Shopping Hour – there’s an hour time-slot for the supermarket delivery. This tells you the day of the effing week.
   Being a carer is a job I don’t want anyone to have. Again, what a fucking shocker. It isn’t a job. (For many reasons related to carer benefits, it is unpaid work with a minimum number of hours per week attached to it.) But it is a job. And it skews your view of things. That’s unavoidable.
   No matter what it is you are considering, caring skews your view of whatever it is you are considering. You see the brand of soap, or the vivid towels, and other details. I catch a heartfelt plea for aid in an advert aimed at one day finding a cure for dementia. Could you just fucking stop using sad piano music in those funereal fucking adverts?
   Then I turn back to caring again. It makes for a great break from maudlin fucking advertising. Advertising that is miscalculated to get me to pity my self. No time for that. I’d rather tell the advert to fuck off.
   There’s John Lydon in the news. What’s he said this time? No. What’s he done this time? Can you provide a comprehensive list of the twats who misunderstood or wilfully misrepresented what he said? The usual suspects.
   This time, though, it’s about being a carer. In his own words, he’s playing out my greatest fucking hits…

“Forewarned is forearmed, and that’s how it is, and you have to get to grips with it and lay off the self-pity.” 

I bitch and moan for comedy effect, it’s true. That’s awful, and you shouldn’t do it. But we have to laugh. Last week I spent ten minutes with two daily carers, cracking inappropriate jokes at my own expense.
   You can’t say that stuff about dementia. Well, I did. And I said that we have to laugh, as…what’s the alternative? And we all laughed at that. Yes, all four of us. The cared-for, as well as the carers.
   Those daily carers handled the bathing and away they went. I have low moments. Covid took away a year’s worth of respite breaks and a year’s worth of daycare breaks, too. I just fucking got on with it, as usual.
   It’s easy, when you don’t have the option. You build high moments in there. I have a morning coffee and a chunky KitKat for breakfast. That’s a fantastic triumph. I’ve showered and I’m ready to tackle important e-mail messages from African princes using Parisian e-mail addresses.
   Coffee and a biscuit both save me. A break for a drink and chocolate. That short break is the major action scene of the blockbuster movie I’m living in.
   Yes, there are low moments. But you see other people in harsher circumstances. I’d go into that respite centre and bump into characters who were blank. Gone. Characterless. And I’d be thankful that my mother called me all the cunty names of the day in her inexplicable anger at something or at nothing in particular.
   You’d think she was being murdered, getting her hair washed. Cold shampoo. Fixed that. There’s a shower cap product with inbuilt shampoo. Twenty seconds in the microwave to take the chill off, and my next meal will smell of such wonderful perfume. But there’s no more cold shampoo or ranty swearing during murderous maintenance. Now it’s a quite delightful quiet head massage, with comments that it is nice. The reward is peace for all. Later, there's still swearing for other reasons. Thank fuck for that.
   I can’t be arsed wallowing in self-pity. Too busy planning to fucking murder an ice cream later. Today, for example. The carer left. I tried to finish routine so I could fry an egg and slap it into a roll with a generous helping of sauce.
   Usually, I do a quick tidy and it is off to the kitchen I go…inside ten minutes. Not today. Arthritis slays the ability to trim nails effectively. Lack of concentration multiplies the problem. I had a struggle on my (and her) hands as I tried to trim nails and not flesh. Forty sweary minutes on the right hand. A skilful five minutes on the left. What the fuck was that about?
   And still, obstacle after obstacle. I was never going to eat that meal. Well, I did, obviously. And it was gloriously messy and fucking fantastic. Highs and lows. The lows may be ocean-deep and the highs are pebbles on the road…but that means there’s still a huge gulf between the two values and…clearly…a pebble-sized high is as tall as the moon on a fucking stick on certain days.
   What I do is rewarding. It comes at a cost. All rewards easily earned are prize-less and empty. I toil in the trenches for this satisfaction, and that fried egg goes into my hands along with an Oscar™ acceptance speech for it.
   On one of my last respite breaks, the driver asked me what I’d do when I got home. I said I’d ordered myself a chocolate cake, and realised far too late that it was a lot bigger than I’d imagined. So I was going to bloody murder that chocolate cake.
   No routine. Eat what I like when I like and not fucking care about the consequences. That first slice of cake was better than a million in the bank. We’d all like a million in the bank. I didn’t jet off to a tropical island. No. I went to a cupboard and reached for a knife and put on a movie and had no fucking interruptions. Paradise.
   Let’s hear a little more from Mr Johnny… 

“I know it’s going to deteriorate into something really, really terrible, but we’re facing it with a sense of dignity. I mean, it would be easy enough to run away and say, ‘Oh, it’s not my responsibility; things aren’t the same’. Bollocks to that.”

Johnny sings that he could be wrong…he could be right. In this case, he’s right. He’s so on the nose that he could be a pair of spectacles. I didn’t have to be a carer, but I had to be a carer. It would’ve been cheap and nasty to run away. To pack her off into a home. Covid would’ve killed her there, of course.
   I had no choice, and I was glad that I had no choice. Roll the sleeves up. Start dementia-proofing the house. There is no such thing as dementia-proofing the house. But rolling up the sleeves was far better than running off down the road.
   It’s shocking at the start, becoming a carer. But that is just the start. You know it will get worse. How bad, and how fast? Oh, it’ll be bad. Going into this, understand that there is no cure, things will get stranger and far worse, there’s no way back…
   PROGRESSION is the name of the game, and in the foreground of this bleak painting you have DIGNITY, RESPECT, and QUALITY OF LIFE to handle. That’s being forewarned. Accept the following, harsh though it may be: dignity, privacy, and respect all take a back seat to SAFETY.
   If you can’t handle that going in, don’t go in. You wade through the whole process clinging to dignity. And you set that aside in an undignified moment when you give the cared-for the bum’s rush in crossing a room from an area of danger to a place of safety. I hurled the Zimmer frame to fuck as it got in the way. All pieces of mobility equipment are tripping hazards in their own right. Wasn’t dignified. But I played the SAFETY card from the top of the deck just as I threw the DIGNITY deck across the room.

May the road rise with you. Keep the wind at your back.

There’s many a time I’ve been on a lonely Scottish road at night, with winter rain passing me on the horizontal. That long awkward stretch ahead of you. No turning here. You know where the corner is. Someone’s face is in the rain. Yours is numb. Must be someone’s face. Five minutes. You will turn the corner and have the wind at your back and all will be well with you. It’s like stepping indoors, while still outdoors.
   So you turn the corner. What a relief. Just for a wee while. Long enough. Catch your breath again. Pace yourself.
   Safety, safety, safety. First, second, and last. If we collapse, undignified, in a heap on that comfy chair, at least we made it safely to the comfy chair. Yes, caring is all about quality of life. There is dignity to consider. Respect. Privacy becomes a different thing. That privacy is the carer and the cared-for against the world…
   No one else needs to see you both in a low situation. And no one else needs to be told what was said by the cared-for to the carer when no one was there as a witness after midnight. You take that stuff with you when you go. That strange shared privacy that isn’t private and never can be described as that. You take on a lot as a carer, and you share and guard someone’s privacy as part of accepting all these strange duties.
   Anyway. For me, it’s always been about preserving quality of life and dignity, as long as I’m not fucking daft about it. I’ve sacrificed dignity in favour of a safe landing on a bed, or a chair, or even a step, every bloody time.
   Sure, that’s awkward. I’d rather preserve dignity all the time. There’s nothing dignified in throwing a Zimmer frame across the room out of the way during a crisis. It is suddenly an obstacle. Time is short. Remedies are limited. Let us get you to that chair by hand quickly, rather than by Zimmer glacially, just this once.
   No, I don’t like sacrificing dignity when safety is threatened. This is awkward. But at every turn I’m trying to keep my mother out of the hospital. One of the daily carers leaves us to look after a relative who would face hospital otherwise. She has the skills to handle everything, she’s up to the job, so she keeps someone away from the hospital risk.
   If you didn’t know, but had to guess, the hospital risk is that once you go in…you don’t come back out again. This is standard. But the effect is greatly magnified with the risk of Covid. The big topic of recent days was oxygen. Oxygen leaking and oxygen exploding. Hospitals, turned into war-zones. Avoid hospital if you can. Doubly avoid it at the weekends. And quadruply avoid it if you are old.
   If you have to go there, go there. Just be aware of the hospital problem.
   I’ve really veered off, here.
   Well, it’s the start of the month and time to post this. Nora has Alzheimer’s. Johnny does what he can. God save the Carer. He’s a fucking swearer.