Saturday

The phone rang early. It was Reggie. He was calling from The Home but he was calling from his own phone.

He told me that Mum had made it through the night but was much worse this morning. He said she was “drifting in and out” but I reminded him that she was on schedule to go into a Sleepy phase today anyway.

“When I saw her last night I thought we might be getting near the end and my impression was days rather than hours…”

He didn’t disagree. But then he’s not supposed to give any indication or set expectations and I immediately felt bad for saying anything.

“Lesley’s just left to go to her dad’s. I’ll come over when she gets back”

“OK”

I went out with The Dog. It was a glorious morning. Sunny and bright. I didn’t have it in me to fight her and just let her choose the route. Quite how she did it I have no idea but she chose a route we’ve never done before and ended up at the home that Mum got transferred from in the summer. It was three hours, 11km and 16k steps before we got back and she behaved impeccably the whole way.

When she got back from her dad, Lesley unloaded the stress of another visit.

She found him so dehydrated that he was unable to speak. When she made him his lunch he was too weak to cut it.

Ever since The Pandemic, Lesley has kept a reserve dosset box in case she wasn’t able to get over to him for any reason. He’d found the reserve and had four days worth of meds from it on top of what he’d been given in the morning.

Lesley looked beaten up. Hadn’t sat down or had a drink the entire time she was there.

The phone rang again. Reggie again.

“Nick, Iris is deteriorating fast. We’re on the phone to the out of hours GP. I think we’ll be looking for the meds we give at end of life…”

“I’ll be there in 20 minutes.”

I was ushered straight into the senior nurse’s office. She was already half way through a conversation with the doctor and I was handed the phone.

Did I want her to be admitted or treated in The Home?

Hmm… She reacted really badly to the transfer in the summer. She hadn’t been out of bed voluntarily for 18 months. Do I want to subject her to a ride in an ambulance only to lay on a trolley in A&E for hours? No, I didn’t think so. It’ll be busy there on a Saturday night. Best keep her in a room that’s familiar with familiar people round her. That seemed the better option.

We decided that the policy that was agreed when Mum was first discharged from hospital would stay in place. No extreme or invasive interventions that would buy little time and just cause discomfort. Above all, keep her comfortable. A couple of sets of observations were delivered. All really bad and getting worse.

There was more conversation. All I could really remember was that the doctor was obviously at home because I could hear kids playing in the background but a medic was dispatched to examine Mum before they decided what to do next.

I went upstairs to see Mum.

She was struggling. I mean really struggling. Literally struggling.

I’d seen the observations – pulse racing, breathing rapid and shallow, blood oxygen dangerously low – and I knew she was seriously ill but I wasn’t prepared for the sheer physicality of the struggle.

Reggie came in. He told me Mum had picked up a bit in the morning. Sean had been able to get her to drink a whole milkshake and a cup of squash before lunch. He’d tried a little later and she was completely unable to swallow anything. She just choked.

“Yeah, I’ve been thinking she was losing confidence in her swallow reflex for a while now. I’ve had to remind her to swallow what’s in her mouth on and off since she got here and that’s got very bad lately. But she’s obviously gasping for a drink. I just tried the tiniest sip of squash and it just made her choke. It’s gone now hasn’t it.”

“Let me ask the nurse for permission to try something. I’ll be back in a minute.”

Most of the time Mum was just delirious and I would simply sit there holding her hand even when she was trying to fight me off. Every so often she would calm down, open her eyes and look at me.

“It’s alright Mum. The doctor is on his way. He’ll be here very soon. You can just relax and they’ll sort you out.”

Then she would try to say something. I wouldn’t be able to understand a word of it. The look of fear and confusion in her eyes would be replaced by frustration and she would turn her head away and shut her eyes. Then the struggling would start again.

We did that every 20 minutes or so until a couple of paramedics arrived.

They did their own observations. They were just like the ones The Home’s own nurses had done only worse. Blood oxygen saturation low and still falling, pulse racing and getting faster,  temperature high and climbing, breathing shallower and faster, crackling noises in her chest.

“We think it’s pneumonia. And her heart is failing and her lungs are just filling up.”

I wasn’t surprised.

“Isn’t that common for patients with dementia when they lose the ability to swallow? Food and drink gets in their lungs?”

“Aspiration pneumonia? Yeah. Not uncommon.”

They made some suggestions. All palliative. Nearly all hampered by Mum not being able to swallow anything.

“We don’t think she’ll last more than 24 hours.” they said as they left to get what they needed from the ambulance.

I continued as before. Hand-holding, reassurance, keeping her mouth moist with the stuff Reggie had got her. I decided to hang on until the paramedics had briefed the nurses, find out what they had to say and then head off home. In the end I stayed until I was certain she had no idea there was anyone with her. She still wasn’t comfortable but at least she was less agitated than she’d been when I first got there.

The senior nurse on the night shift came in to administer what the paramedics had left. While she was getting gowned-up she said..

“If something happens overnight tonight, is there an undertaker you’d like us to contact?”

I had to admit that I hadn’t given it any thought. I’d been blocking that thought out even though it was inevitable. I hadn’t wanted to start making enquiries to fear of jinxing something. I’d thought I’d be getting more notice. Idiot. 18 months declining in a nursing home wasn’t enough notice. I felt embarrassed.

“I’ll contact the people who did my dad’s funeral then. They’re very good.”

“OK. Thank-you.”

Eleanor had been wandering up and down the corridor all evening. Obviously anxious but then she’s always anxious about something. Even though it was nearly 11pm she was still waiting when I left.

“She’s a lovely lady. Is she alright?”

“Yeah, there’s nothing you need to worry about. I think it’s going to work out alright.”

“She’s not very well, is she.”

“No Eleanor, she isn’t very well”

“I expect she’s got a headache.”

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