Tuesday

The day started with another early message from Lesley’s dad’s carer. Dad was especially weak and wobbly first thing but he seemed to pick up a bit after he’d had breakfast. My guess, and it was only a guess, was that he hadn’t had enough to drink yesterday evening. He’ll drink what’s put in front of him but doesn’t think to get himself a drink. I can’t claim to have grounds to be too critical there. I do that when I’m involved in something too.

A big day for Lesley and her dad today. A nurse from the Palliative care team was coming out to see him at home. It wasn’t an altogether satisfactory appointment.

The nurse got off to a bad start. Five minutes before she was due to arrive she phoned to say that she hadn’t left the hospital yet. The journey is 45 minutes on a good day.

Personally, I don’t have a problem with this. It’s Healthcare. You’re working in an environment where ‘stuff’ happens. Serious ‘stuff’. With people dying and that. If it was my family member who was getting attention and the medic in attendance said they had to stop what they were doing to go to another appointment I’d be livid.

That wasn’t the problem with the appointment though. The nurse didn’t seem to have read his notes. You could argue that she she wouldn’t have had time to if she’d been dealing with something serious enough to delay her by an hour.

The main point of the exercise was to determine how close he was to being within the final 12 weeks of life which would qualify him for fully funded care in a hospice. She was surprised to find that he wasn’t anywhere near that bad yet. Not even close.

“Get in touch with us when you think he’s getting close.”

Lesley took that as them taking the chance to get him off their books. It may be a harsh judgement. The nurse had already said plenty to irk her. Telling Dad one minute how well he was doing and telling Lesley how she thought he wasn’t coping and how she thought he should be in a home the next.

Rightly or wrongly, Lesley felt she was left with a set of impossible responsibilities. WE had to decide when his mesothelioma got so bad it was too bad and he needed full-time medical attendance. WE had to decide when his inability to care for himself at home got so bad that he needed to be moved out to somewhere with full-time help. We thought these were decisions best made by medical and social services professionals. How on earth did they think WE were equipped to make them? He’d already rejected all of the options offered for rearranging his home to make things easier long ago and he was even more entrenched in his views now that his dementia was so much worse.

With the delay to the appointment and a lengthy letting off of steam when Lesley got home, I was later than I’d hoped getting to The Home.

Mum was sound asleep and snoring loudly. Totally unresponsive. The number of half-finished drinks on her table said that she’d been asleep or uncooperative for a while. It would be useful, I thought, to know whether Mum had been asleep all day in a proper Sleepy phase or whether she’d just gone to sleep because it was late. It wasn’t late late but I knew the day shift would be going home in a few minutes. If I was going to speak to someone who’d been with Mum all day then I had to do it quickly. I could hear Sean’s voice in the lounge. I had no option but to go in.

Going in the lounge meant that I would be spotted by Audrey and that I could kiss any chance of a quick exit goodbye.

As usual, Audrey was pleased to see me and excitedly started telling me her news. Sean and his colleague confirmed that Mum had been awake most of the day before laughing at me and leaving me to it on my own.

I didn’t know what sort of activities had been organised during the day but given the restricted mobility of the ladies on the top floor a dance seemed unlikely. But that was Audrey’s news. She’d been dancing.

The other ladies were intrigued by the story. Except for Eleanor. She lost her temper because I wasn’t talking to her and threw her walking frame over.

It did get a little bit strange because the more Audrey talked, the clearer it got that that this dance party was a family do that must’ve happened ages ago. But at the same time, Annie got more and more convinced that she’d been there too and told me how much she’d enjoyed it. Then Audrey thought that both Annie and I had been there and was delighted that we’d been able to witness her prowess on the dancefloor. This, from a lady who can’t stand up unaided now.

I did feel a bit short-changed. Audrey’s stories are usually tales about generals or farm management or multinational projects. A dance party seemed a bit tame. But Audrey enjoyed telling the tale. So much so that she told me twice. It’s normal for her to get excited and for her not to be able to find the word she needs quickly enough. It’s normal for her to make words up rather than think of the right one so as not to ruin the pace of her narrative. This evening, most of what she was saying was her spontaneous vocabulary and I couldn’t understand much. All I could contribute was the occasional “My goodness!” or “You didn’t!” or “How wonderful!”.

It wasn’t much, but it did the job.

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