In A World Gone Mad: 2 May 2020...2

We had a bad night, wandering, confusion, shouting—and that was just me. It lasted all night.

He hadn’t settled by the early hours, and the household was awake, so Max, Andy and I, got up to play Magic the Gathering, MTG. We settled Arthur on the sofa in the lounge with us—no show without punch—and unlike a Gremlin, we fed him at regular intervals after midnight to keep him quiet.  He nodded off for the first time at 05:43. He was compliant, we got him settled, finished our game and went to bed.

07:24 The front door banged three times. “Bloody hell, What the bloody hell’s going on? What’s happening?”

Arthur never swears, he hates bad language. We have to keep the front door locked because he lets the dog out onto what, under normal pre-Covid circumstances, is a busy road. He’d found the key under the cubby and was standing in the garden.

Andy was the first on the scene, Max and I behind him.  Arthur’s wearing his dressing gown, it’s inside out and open, the belt is somewhere under his bare feet. He has on a t-shirt and is butt-naked from the waist down with his willy bobbing out of the bottom of his shirt. The dog and cat are running in the street.

“Grandad, come in, let’s get you back to your room.”

“Where’ve they all gone; they’re going to be killed.”

We took over and led Arthur into the kitchen. Andy went back to bed and I made tea—of course I did.

He’s always shouting, but this was to a new level, I’ve never heard this decibel or this much insanity in his voice. And the conversation, like every conversation is repetition on repetition, with each three lines repeated until he moves onto the next three and he can flash back to any point, at any time.

“Where’ve they gone? Where’ve they gone?”

“Who Dad?”

“The children. They were here, twenty or forty of them. They’ve all gone. Is it called off now? When’s it happening? Why haven’t I been told?”

“Dad, nothing’s happening today. There are no children here, it’s just us Dad, me and Sarah and Andy.”

“I know there’s no bloody children, they’ve all bloody gone, you fool. They were here, all alone, unsupervised. I expect I’ve got to organise it all. Where are all the staff?”

“What staff, Dad, where do you think you are?”

"Where have the children gone, they were all here, running around and breaking everything. There was twenty or thirty of them and they’re all going to be dead now.”

“Dad look around you, this is our kitchen, you’re at home. There are no children.”

“Has it been called off then? Why doesn’t anybody tell me anything? I have to find the children. It’s on the radio, they’re all burning up in flames. Look, there’s one. He’s going to get killed, grab him. Grab him. It’s not safe. We have to keep them safe. They’re all going to get lost or run over. Has it been called off then? What time are they all coming? I expect they will be here.”

He was up and down, shaking and screaming. He usually dips into one rant, then to another topic and back again—but today he never veered from him being in charge of some event with twenty, thirty or forty children and he’d lost them. This is the first time he’s hallucinated and seen things that aren’t there.

The bombing incident and this are new territory.

Max got up and went to the kettle with his back to his dad. I took over calming, pacifying and getting him to sit down. He stumbled three times during his flailing and had to be caught. He kept looking under the table and running to the locked back door, rattling it, trying to get out and getting enraged when he couldn’t.

Max was crying his eyes out. The new phase has come suddenly, last week it was just the usual: theft, kidnap and poisoning. These are all common paranoia subjects in dementia sufferers: and we had all three.  Max could handle that, but seeing his dad flying at shadows and seeing things terrified him.

Max loves his dad, it’s awful for him seeing Arthur like this. I’ve spent months reassuring him that Arthur is happy in his own, selfish world. He’s always been upbeat and unbearably annoying in his cheerfulness. Max was the only one suffering, but since contracting Covid 19 Arthur has changed. The balance has shifted, before he caught the virus, he was always happy, with the odd bout of confusion and frustration. Now the scales are weighted in the other direction, he is increasingly confused and the only time he’s really happy is when he’s eating—which to be fair he does an awful lot of—and when he’s out walking the dog.

“We’re going to lose him, Sarah, we’re going to lose him. I think he’s on his way out.”

“Shush, he’s going to be okay. This is just the next stage. We just stay calm and help him through it.”

He’s not coming through it.

The rant lasted for over an hour before he blew himself out and allowed himself to be led back to bed. I picked up the shards of another broken mug from beside the front door. There isn’t a mug or a glass in the house that isn’t chipped—except mine that are kept out of his way. We keep buying new ones, he keeps breaking them. In one week, he broke the living room door, the dishwasher, the toilet flusher, three glasses, a mug and a plate.

He is on palliative: End of Life care now. He isn’t going to come out of this and show any improvement—he can only get worse.  It would be heart-breaking for Max, but the kindest thing would be for him to pass away in his sleep, sitting in the garden in the sunshine before he deteriorates any further.

The really sad thing is that his body is healthy, and he could last another ten years.

I took some comfort from the trauma this morning. Since he moved in with us, my compassion for him has been getting less and less. I’ve run a dementia unit in a nursing home. I’ve got thirty years’ experience dealing with people just like Arthur—but it is a million miles away from nursing them for a profession to having them living in your home. It’s opened my eyes; I knew it would be hard, but I thought I’d deal with it far better than I have. If it’s up to one year, it won’t be so bad, but if it’s five or ten, or fifteen, I resent losing those years of my life. This should be our time, mine and Max’s. My children have grown up, his seem to be returning and now I have Arthur to deal with as well.  I resent him—with his absence of please and thank you.

“How was your lunch., Arthur?”

“Yeah, it was alright.”

Your welcome. Don’t mention it.

The good thing to come out of this morning is that I do care about him. I’ve doubted it. When I’ve wished he’d hurry up and die, it hasn’t always been for his benefit—and I call him selfish. Now, when I say it would be the best thing for him, it comes from a place of wanting the best for him—for all of us. I’m so sad for Max watching his dad—of a million colours— diminish in front of him.

He sailed through the virus. He was one of the first in Cumbria to get it. He caught it from an outpatient visit for an eye test in Lancashire, and, because it was in the first weeks, he only received a small viral load. It meant that we suffered a light dose.  He came through it well and was back on his feet in a week.

However, it triggered a terrible response in his dementia.  At some point during his illness he vomited. His mind played with him and told him that it was food and drink making him ill.  Through our own symptoms of the virus, we had to visit twice a day to deliver his meals and medication. He refused to eat and went ten days on a few mouthfuls of food. Three days before we brought him here to die, he stopped drinking. In those three days we only managed to get a few sips of water down him and no food at all. We called an ambulance, but they refused to take him back into hospital. We were told by his doctor, ‘No matter how bad he gets and no matter what his condition, we will NOT, under any circumstances, be taking him into hospital.’ The doctor told us that he was at the end of a telephone if we needed to talk, but by this point the country was in crisis—it was three weeks after the first cases. The hospital is full of Covid 19 sufferers and he wouldn’t be taken in because he wasn’t strong enough—and because they needed the bed for people with a life in front of them—we were on our own and had no choice but to bring him to live with us—his decline since February is massive and he’ll never leave.

I’m proud of what Max and I –and Andy, he does his bit and sometimes he’s very good with Arthur—have achieved. We called Kevin in Wales and told him to make arrangements to come through to say goodbye to his dad. Arthur was so frail that we believe he was a couple of days from death.  The old bugger rallied. He loves his food above anything in the world.  He doesn’t care if nobody else eats, as long as he gets his. Starving himself to death is the last thing we’d have expected from him.  He’s only small at five foot four, but his healthy weight is about ten to ten and a half stone. He’d dropped to under six. Two months later and he weighs nine and a half stone and is back to full health.

It took time, patience, cajoling, pleading, bullying—and luckily for us he loves those awful Fortisips. We still get them on prescription for him—but he doesn’t need them, I get them purely as a treat now because he loves them.

We’re going to have to speak to his doctor on Monday for the third medication review in six weeks.  

On another issue, Ivor, Max’s stepdad, had a sore toe.

He went for an appointment before the world turned on its axis, in the same week Arthur got the virus and for some reason, he was given an MRI scan. Ivor is riddled with cancer, bone marrow, lungs, stomach, brain—everywhere. He only had a bloody bunion. He’s stage four and dying. Joan is dependent on him and will be lost without him. He has not been seen since his diagnosis. He was prescribed some hormone tablets over the phone – and nothing else can be done for him until lockdown is over. The man is dying of cancer, but his immune system is so compromised that he can’t go anywhere near a hospital to get help. It’s nobody’s fault—but again they are on their own.

In months, or weeks, he will be dead, and then we have to support Joan, too. The Inn is full, and we have no idea what’s going to happen.

And still there’s Arthur, and I mean it when I say—God bless him.

12:30 … Here we go—he’s up—reset.