Thursday

Ever since Lesley’s sister had announced that she was coming to visit their dad we had been looking forward to handing care duties over to her and taking today off. Without the mind-bendingly tiring work of actually doing the caring, Lesley was able to do a minute-by-minute running commentary on WhatsApp of what a “Day Off” actually looks like. Lesley never has the space to do it like I do for my family. It left her sister’s head spinning with the number of different teams that Lesley has been dealing with and how fast the view of what care Dad needs is changing.

First call of the day was a scheduled update with the lung cancer team at The Hospital. Lesley gave her account of how sudden and severe his decline had been since the last update and of how bad a state he’d been in since Christmas. The doctor was appalled. She described it as “inhumane”. When Lesley described the meds he’d been prescribed she said she thought Lesley had made a mistake. Then she looked back at his records.

“Oh my goodness! That’s all wrong!”

She had a completely different view of Dad’s current symptoms. In her view the compacted bowel, the sudden looseness and lack of control, the sleepiness, the weakness in his legs, the appearance of swollen lymph nodes in his groin, the rash on his legs and how laboured his breathing is when he thinks you aren’t watching him all pointed to a sudden advance of his mesothelioma into his spine.

“We’ll get him in for an MRI and I’ll get on to his GP, the Palliative Care team and the district nurses.”

From what I could hear, she seemed perturbed by how he had apparently been shunted to one side by all of them during this episode and I got the impression that some backsides were being lined up for a kicking.

Since one of the meds that needed adjustment was for Dad’s pain management, I did a quick update in the group chat about him. This was solely for Lesley’s sister’s benefit and everyone in the group except her would be aware of that.

“One thing that would be useful when the painkiller dose gets adjusted is noting when Dad is in pain. He is quite bad at reporting it. We can’t tell if it is stoic denial or the Alzheimer’s preventing recall.

“Reggie reported that he was crying and doubled-up in pain with his guts and he later couldn’t recall or wouldn’t admit it to the GP. He’s told me that it hurt to pee but later denied it. He’s told Lesley variously that he has no pain, that it only hurts when he moves or that it always hurts when he moves.

“I know that assessing pain is hard. It was with Mum. But Juliette and Barbara at The Home could take one look at Mum and just see it. I’d always ask what gave it away so I could learn and, from what I can see, Dad’s in pain a lot more often than he says he is. But noting when he admits to pain would go a long way to help the medics get the painkiller dosing right.“

We got The Dog out for her walk. It was cold, clear and bright. Lesley and The Dog both appreciated a walk that involved all three of us. My headache cleared.

I thought I had done pretty well in avoiding having to answer questions about how we were doing and how our Christmas and New Year had been until today. We met an artist friend of mine who I hadn’t seen since the summer and she unwittingly pressed the button. I stuck to my intention not to sugar coat our festive season.

“It wasn’t great to be honest. I spent Christmas Eve registering my Mum’s death and on New Year’s Eve we got told that my Father-in-Law has Alzheimer’s on top of his Mesothelioma”

Poor woman.

When we got back from our walk, Lesley’s phone went wild. She spent a couple of hours on the phone to all the people whose cages had been rattled by The Hospital. All sorts of visits and re-appraisals were scheduled. Fortunately, they would all be while Lesley’s sister would still be here to witness them. All of them were likely to correct Lesley’s sister’s rose-tinted view of Dad’s condition and his care needs.

“Could you do a run to Tesco while I get on with the housework? I haven’t done any since before your Mum died.”

“OK. I’ll stop off at The Home on the way if that’s alright?”

I signed myself in. In the box where you write the name of the person you’re visiting I wrote

“EVERYBODY!”

The Manager was in her office.

“Would you mind if I get half an hour’s respite here? It’s crazy at home and I need some peace and quiet.”

“Of course! Audrey will be pleased to see you!”

Everybody was pleased to see me.

Eleanor was the first person to react when I walked in the upstairs lounge.

“Oh! It’s you! I hope you’ve brought something to eat with you because I’m starving!”

“Don’t worry, I reckon your tea will be here in a minute.”

Sure enough, it was.

“Hello Audrey! How are you?”

“To tell you the truth, I feel like death warmed up. But I’m so pleased you’ve come to see me!”

We chatted. I made her laugh. She brightened up.

She didn’t feel like anything to eat or drink. I was offered sandwiches, a coffee and some biscuits in the hope that me eating with her would encourage her to too. It didn’t.

The other person who didn’t fancy anything was Annie. She was having a really bad day. She’d recoiled in horror when the food trolley had arrived.

“TAKE IT AWAY!! IT’S ALL POISON!!”

While I was talking to Audrey, Annie was getting more and more distressed. She tried to open a window to get out and threw Eleanor’s walking frame across the room.

When I took my leave of Audrey, Annie stood up and blocked my way out. All four foot nothing of her.

“Sir! Sir! Will you help me escape?”

“Of course I will but I’m going to have to warm the car up first. You take a seat there and I’ll come and get you when I’m ready to leave.”

“No. I don’t trust you. I’m coming with you now.”

She turned to put her cardigan on and I took the chance to get out. But the lift took too long to come up and she caught up with me followed by two carers.

“You can’t come with me dressed like that Annie. It’s really cold out there. Go and get a big coat.”

“Yes Annie. Come and get your big coat.” the carers both said as they attempted to lead her away.

“NO! NO! LEAVE ME ALONE! I DON’T TRUST YOU!!”

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