Wednesday

I had got the dreaded “Your Google photo storage is full and your photos aren’t being backed up” message over the weekend. So while I was scanning through downloading and deleting I found a couple of photos of Mum which left me genuinely shocked. I shared them in the family WhatsApp group.

The first one was from a couple of days after she’d been discharged from The Hospital to the first nursing home. She’d just had her hair done. The second was from Christmas Day. Eldest Sister’s reaction summed it up perfectly.

“Wow! I knew she was looking older and thinner but I didn’t realise she had changed this much!”

Old, thin, worn and really, really weary.

On top of that, today’s visit was completely surreal.

I walked into Mum’s room and she said

“Who is it? Who’s there?”

When I said “It’s me Mum. It’s Nick!” she jumped out of her skin.

It didn’t take long to work out she was asking someone else. In fact there were several Someone Elses in the room and she spent a fair proportion of the visit talking to them rather than me.

I always follow cousin Neal’s advice to not fight against a dementia sufferer’s reality as it causes upset for no benefit. Keeping up with it is hard though especially when you can’t make out everything that’s being said. or whether it’s you that’s being spoken to. It became apparent that The Others were all asleep and Mum was concerned that they needed something to eat. She came up with a shopping list that I’ve heard before – onions and tomatoes – but seemed confident that there were potatoes in the cupboard (there were last time we went down this path as well).

“Oh, and get some meat too”

“What sort of thing are you thinking about mum? Lamb or beef?”

“Turkey. Or chicken.”

“I’ll just get whatever they’ve got then shall I?. Whatever looks good.”

“Yeah”

“Just out of interest, how many are we cooking for?”

She started looking round the room and counting. She counted for so long I thought she’d forgotten what the question was and had drifted off. I tried again a bit later and she reckoned on 10.

What was weird, OK, what was ALSO weird was that the staff never saw any of this. Mum slipped up once when Juliette was there with us but otherwise, never. Perhaps they just can’t understand anything of what she’s saying. Anyway, to alleviate my concern that The Others are only around when I’m there I tried to find out how long they’d been with her.

“Have this lot been here all day then Mum?”

“Yeah”

“No wonder you’re so tired then. I’ll leave you to sleep and I’ll be back tomorrow”

“Yeah. See you tomorrow”

Outside Mum’s room I could hear footsteps and then “Lily! Come out of there! That’s not your room!”.

This drew some interesting responses in the family chat. Youngest Sister said

“Nick, the staff may not notice it or think that she is talking to them as they don’t get to spend the time with Mum that you do. Why don’t you record Mum when she is having these episodes to show the nursing staff?”

The suggestion that I record Mum’s delirious spells to show staff was a good one but Mum would snap out of them if I picked up my phone. I do have a small GoPro knock-off that I could take with me. Mum wouldn’t know what it was and I wouldn’t have to fiddle with it while she’s talking. It did mean going ‘tooled up’ on every visit as I never knew when Mum was going to ‘perform’. 

Eldest Sister said…

“Recording Mum will be difficult for all of us when we visit, but through this chat we do have a pretty good record of how she is almost on a daily basis. Would it be helpful if we gave them a record of how she’s been since she arrived – just a bullet point for each time any of us have visited? I’d be happy to do it.

Sometimes when we visit, she seems happy just to listen to us talking – she likes hearing about all the grandkids & what they are up to.”

Brother said…

“It’s a question of time and the nature of the conversations. The time that the staff have to spend in conversation with Mum is either to a specific purpose or when she’s not in her own space, e.g. in the lounge. Either way, she’s focused on the situation and not focusing on what else is going on. It’s a bit like any conversations in a room full of people. You focus on the conversation you’re in but even in small spaces in that conversation you can easily begin to engage with other people or events in the room. Because you are there long enough to have those spaces, you get to witness so much more of Mum’s “landscape”.”

It was right to say that the time factor was key. Juliette has a great relationship with Mum but I didn’t think she had the bandwidth to sit with mum like she did a couple of months ago. She was always frantic now. Terri also used to sit with mum for lengthy periods but she went on an extended ‘holiday’ (she said) recently and she just wasn’t the same person when she came back. All the life has gone out of her. Problems outside of work? Possibly.

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