Sunday

When your visit starts with Juliette saying “Can I talk to you before you leave please Nick?” you know things aren’t great. She was in the middle of a meds round and was wearing a bib that warned that she shouldn’t be interrupted so I didn’t press for more. I didn’t need to. I thought it was fairly obvious what she wanted to say.

Reggie came into Mum’s room while Juliette got on with her round. He asked how Lesley’s dad was getting on and I told him about my visit  on Friday. How he’d started off OK but had got very tired very quickly at the day centre. How I’d given him a cup of tea and two minutes later he’d forgotten I was there. How he’d pretty-much kicked us out because he wanted to go to bed. Reggie gave me his best guess about what was likely to happen next and told me what signs to look for.

Our conversation turned to Mum. He told me that she hadn’t been as unresponsive as she normally is on a Sleepy day. Although he’d had to take her hand and give her a little shake to get her to acknowledge he was there, he was able to get her to open her eyes at least. That’s more than you’d normally get from Mum.

“Juliette says she wants to speak to me. She sounded worried.”

“Does she?”

“I can’t tell you how relieved I was when Juliette transferred here. She’s got the knack of asking Mum precisely the right question and understanding what Mum means when she says what she says. It makes such a difference to Mum. I don’t know how she does it. It’s like witchcraft.”

“Ha! Yeah. I don’t know what that’s about.” he said before changing the subject.

“What do you think of Rosie WhatsHerName’s resignation?” he asked.

“Rosie Duffield? Not much. She’s no loss.”

I suggested he take a look at Phil Moorhouse’s YouTube channel – A Different Bias – to get a better explanation of who she is, why she doesn’t matter and why Labour shouldn’t overreact. Our conversation was halted by the arrival of Mum’s tea: a milkshake, a small pot of yoghurt and two very small sandwiches.

Given my recent lack of success getting Mum to eat anything, I let the carer try first. It was both gratifying and concerning that she had no more success than I ever do. We decided that I would take over and have another try when Mum had had a rest.

I got a little more milkshake and two teaspoons of yoghurt down her before she completely refused them and the sandwiches and shut her eyes. I suspected that Mum was faking sleep as that’s her Go To when she doesn’t want to do something.

Juliette didn’t wait for me to go and see her on my way out. She came round and invited me out into the corridor.

“She’s very frail. Very frail…” she started.

In the end she didn’t tell me very much we didn’t already know. Mum’s very frail and in decline, taking longer to come out of a sleepy phase, holds food or liquids in her mouth a long time before swallowing, won’t eat, won’t drink, losing weight… The thing that had tiggered the fresh concern was that Mum was hallucinating more and more strongly and publicly now. Lots of carers were now reporting that Mum was seeing a little boy at the end of the bed or was asking for a drink to be brought for the little girl in bed with her.

I didn’t think Mum was behaving that much differently. Mum has been seeing Other People for more than year and sees them during the last half of every weekly Sleepy/Active cycle. When the hallucinations started, Mum would stop talking to her Other People the instant a member of staff came in to the room. I remember Juliette being astonished when I first mentioned them because none of her team had seen or said anything. I remember being in the room with Juliette when Mum started talking to a little girl and Juliette told Mum that she couldn’t have Other People in bed with her. Mum was extra careful after that. The first person other than me that Mum got comfortable enough to share the existence of Other People with was Reggie and that had got to have started six or nine months ago at least. If there is a difference then it’s that Mum’s hallucinations start earlier in the cycle than they used to and that Mum’s less careful about who she shares their presence with.

“But hallucinations… It’s not nice…”

Mum’s hallucinations have, with one, maybe two, possible exceptions, never been unpleasant. If they are recognisable and identified to me then they are relatives or children that she played with when she was very young. If Mum doesn’t recognise them then they seem to be benign beings, butterflies or little birds. Mum’s always happy when her Other People are around. I’ve often had visits when Mum found her Other People more interesting and entertaining than me.

For a long time I thought that the exclusivity of Mum’s Other People meant that they were coming in with me. It was rare, perhaps less rare now, to hear her talking to someone only she could see as I approached her room and on a good (or bad) day, the room would be full of them within minutes of me sitting down. I think they leave with me too. There was one occasion I remember hearing her yelling “Here! Where are you lot going!?” as I walked away from her room. There was one occasion when I was being left out of a conversation with a room full of Other People and asked

“Who are this lot then? Have they been here all day?”

“Yeah”

So they may be with her all the time when her hyperactive delirium is bad now. Or maybe they always were and she just hid them from staff she wasn’t comfortable with. We’ll never know and there’s no point in asking her.

“I suppose… Families often say their relative is happy in their own world…” Juliette continued.

Mum certainly is. She’s far happier there than here. When she’s properly lucid she’s utterly miserable. She hasn’t said it for a while but the first day or two of her Sleepy/Active cycle would be the time when she would say to me “If I could die, I would.”

The Home gets a regular weekly visit from the local GP but the regular doctor is on holiday and the practice would be sending someone else. Juliette wants to start investigating. I asked if I could speak to Mum’s regular GP next week when he sees Mum but it’s more likely that if I got anything at all I’d get a phone call.

“OK. I’m sorry.” Juliette said as she went off to attend to someone else. She was clearly upset. I just hoped that I hadn’t looked bad by not being upset at all. After all, I hadn’t heard anything I didn’t already know. Well, except for the fact that Juliette has got to the bottom of Mum faking taking a drink.

“She puts her tongue over the spout on the cup to block it. I take the spout off when I give her a drink now.”

That will work for a while but Mum will work out a way to avoid drinking soon I’m sure.

But the visit was a standard ‘First Day Awake After A Sleepy Phase’ visit. Unhappy, uncommunicative and uncooperative. The only word she said was “No” and she said that a fair bit. As the Sleepy phase hadn’t been as deep as normal she should have been a bit more awake than she actually was. But then, as I said, she was faking sleep to avoid having to eat.

I met Mum’s carer as I headed to the lift. Knowing that everything Mum eats and drinks gets recorded, I fessed up to the empty sandwich plate that she’d find when she cleared up the leftovers.

“Mum didn’t eat the sandwiches. I did. I was starving.”

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