Wednesday

I’d been getting increasingly curmudgeonly in recent years and hadn’t bothered much about any sort of celebration on New Year’s Eve. We usually go to bed well before midnight. That was until we got The Dog.

The Dog seemed to sense there was something amiss when dusk fell and had been reluctant to go out for her second walk of the day. When I say reluctant I mean that she went to the toilet in the front garden and headed straight back to the front door. I had to admire how well she coped for most of the evening but from 11:30pm the noise got too much and she crumpled. Full-on panic attack. I stayed up with her until she calmed down and got to bed at 2am.

Over breakfast, Lesley found the post that had been delivered yesterday. Amongst it was a report from the psychiatrist who’d been to visit her dad at the beginning of December. Lesley only said one word as she read it.

“Alzheimer’s”

That was the first time any medical professional had used the word about him. It’s going to be a game-changer.

There was no early-morning carer for Dad today. Lesley was on duty. Again.

The overnight storm hadn’t quite blown itself out and Lesley was exhausted from weeks of sleepless nights and days of high stress driving. It was my turn to drive.

Given how often we’ve done it, packing for an expedition with The Dog to Lesley’s dad should be a lot more routine than we’d been finding it lately. Something always gets forgotten and we have to turn round to get it. Today, it was my fault. I had put my phone on charge and had left it behind.

The arrival at his house set the tone for the whole visit.

“Hiya!” I said, “How are you doing? Feeling any better?”

“No. Not really.”

“Oh dear.”

“I’ve been to see the doctor twice.”

“I know. At least you’re getting your money’s worth out of the NHS”

He’d successfully, or so he said, taken a sachet of what he’d been prescribed yesterday after his breakfast. Lesley gave him another when we arrived and another just before we took The Dog out.

“His belly was really distended when the doctor examined him yesterday.” Lesley reminded me on the walk, “He’s full up.”

“Yeah, you said. It’ll be volcanic when it goes. Not so much Krakatoa. More like Crapatoa. It’ll be a Poonami.”

At least she laughed. She added

“It seems sad to me that we send our brightest and best to be trained for 9 years so they can spend their day dealing with people who can’t shit.”

We’d let The Dog choose the route. Lesley had grown up in the village and I’d been visiting for more decades than I care to think about. The Dog took us along a bridleway that neither of us knew even existed.

On our return, Lesley made up another sachet.

“How many more of these have I got to take?”

“That’s the last one you’re allowed today.”

“Did you go to the toilet while we were out?” I asked.

“Yes”

“And did you manage anything?”

“No”

We both instantly felt sorry for the carer who would be visiting in the morning and imagined the hellscape he might find.

“It’s got dark!” he said.

“Yep. It does that every day”

He didn’t react. Possibly because it wasn’t the first time I’d used the line.

While Lesley was preparing his tea, her sister phoned Dad.

He seemed to cope pretty well with the conversation until she asked him how he was. I think he always tells her that he’s “fine”. He didn’t today.

Then she asked whether he opened the Christmas present from her yet. He still hadn’t.

“Why haven’t you opened it Dad?”

The answer was odd. Something about balancing meds. The uncertainty and concern in Lesley’s sister’s voice that I thought I’d detected after not being told he was “fine” was now definite. The rest of the call sounded awkward.

We gathered our bits together to get ready to leave him. He’s had the habit of asking you to do something or asking a question when you’re clearly doing something else for years but it’s especially bad now. His chaos is contagious and the frequency of stuff being left behind there is going up sharply. The last loss was Lesley’s house keys and they still haven’t turned up. But the recycling suddenly became an urgent matter and needed attending to immediately.

The final question was

“What time are you getting here tomorrow?”

On the drive home Lesley said

“Did you notice how quickly he’s got the expectation that I’ll be there every day?”

Her first words on getting home were

“Have you seen my keys?”

“What!? Not another set gone!?”

Our friends on the south coast asked if we were up for a video call. We settled down for a group therapy session. They aired their tales of health and officialdom-related woes and we unloaded ours.

When Lesley got to say how hard she was finding looking after Dad and doing everything for him we thought she was going to burst into tears.

“I don’t live here any more. I just camp here. I get nothing done for me. And my dad and my sister just want more.”

It’s not helping that the different branches of the NHS that she has to deal with for him are giving different advice on what help is available and the landscape of what help he needs is changing as the various conditions he has worsen at different rates. It’s probably unkind and unfair of me to think that each of them are thinking that he’s somebody else’s problem. We’re finding it hard enough as it is to make decisions under this level of stress. With unreliable and conflicting information and a moving target we stand no chance.

The plan for him that had been in place for the last few days – that extra carer sessions in his own home would be enough for now – seemed to have been holed below the waterline as far as I was concerned. I couldn’t see how we could cope with Alzheimer’s that way if it was worsening as fast as it looked to be.

I hoped that having a single prominent condition might make the decision-making easier. I’d been leaning towards 24/7 professional care for a while. Since I’d seen how well looked after Mum had been probably. Mum’s comfort and safety had never been a worry for me. Lesley desperately needs that load lifted off her too.

But the next big hurdle was going to be letting Lesley’s sister know about the Alzheimer’s. She’s still able to convince herself that his dementia is quite mild.

Bloody hell.

Author’s Note

My Mum is in a nursing home in a small village in the Thames Valley. The photo is not of the home. I used an AI image generator to give the reader some idea of the home she’s in.

All, some or maybe even none (you’ll never know!) of the names have been changed to protect privacy and hide real identities. If you think you recognise someone then let me know and I’ll edit the post or remove it entirely