Reasons various

23 Feb

On day 11 of the 100 Day Challenge, I didn’t post anything. On Day 12, I posted the following:

Didn’t get to this yesterday for reasons various…

I wasn’t keeping a diary at the time, and so I don’t know exactly what the “reasons various” were. But in the lead up to this, several days previously, I had sent a message saying the following:

Mum was up and about again last night… at 10pm I noticed her on the camera and went across. She wanted to check her diary to see what was happening (gas boiler man coming this morning, so she probably had a slight memory of this being planned). She then peeped round the door into the sitting room at 1.30 and then withdrew again (probably going for a pee). She’s just opened the curtains now so I think will be tired and more confused through the day today.

It was just before 7am, so that was me up and at it for the day.

The following evening I wrote:

Not much change really to be honest. J is here too at the moment which is certainly much more manage-able for both of us and I think better for Mum too. She’s been enjoying having us read excerpts of her memoirs to her this evening. I’m hoping this tired her out.

And then, this gap of a few days… and on the morning of the 12th, when I posted about “reasons various”, the following:

Mum’s probably much worse than when you last saw her. It’s hard to notice how much deterioration when you’re just dealing with it every day. She wanders at night, though not every night, and needs gentle persuasion and physical help to get back to bed. She honestly can do little for herself unaided now, though still has a healthy appetite and manages to eat. Her short term memory has gone. She is still though very much herself and is coping amazingly, such an inspiration.

Reading this back, I can immediately recall how exhausted we were, how our complete focus was on what was best for Mum. But we were also really aware that in reality we didn’t really know what was best for her. We had been trying to put additional support in place, to help her get dressed in the morning and getting her ready for bed in the evening. But what she really needed was someone with her 24 hours, partly to try to keep her safe, and to help her when she needed to go to the loo, but also because she clearly benefited from companionship.

We had set up a small camera in the sitting room, to help us keep an eye on her when we weren’t there in the room with her. I was initially nervous about this, worrying that she might think we were spying, but no, she was very certain that she could turn it on and off (she couldn’t) and she rather liked it; she understood that it was for her benefit, so we could come when she needed us.

What the camera had shown us though, was that when Mum was having her ‘quiet time’ after lunch with her feet up (this was on the advice of the superb District Nurses, to try to reduce the water retention in her legs) in reality she was bobbing back and forth, up and down, grabbing her walking frame and beetling off out of sight (probably to the loo again) every 10 minutes or so. So, by the 12th June, I was spending more and more time with her (and helping her in the loo), and less and less productive time on my laptop for work.

The restrictions as a result of the Covid pandemic had allowed us all to work from home. But I was now finding that juggling work and caring responsibilities was nigh on impossible. I felt like I was failing at both things. I had considered several times if I should see my doctor and ask for a fit note, to be signed off work for a few weeks.

The emotional toll of trying to keep Mum safe, and always knowing we were probably not doing quite enough had worn us out. I planned to head home for a week in a few days’ time. I hated to admit it, but I needed a break, needed ‘respite’.

But, we were approaching midsummer in Galloway, and Mum’s garden was a solace – the honeysuckle was billowing over the gable end of the house and everything was lush and green. I yearned to go down to the sea, I knew it would restore me. But there were never any hours in the day when this was possible. The sea was there though, waiting for me.

Dementia is confusing.. for the person with dementia and those around them. My wish is that nobody with dementia should go through it alone. Click on this link to help make this true. Thank you.

And if you want to start at the beginning of this series of posts, head here, to Taking Smock of the Situation, where it all began.

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  1. Taking Smock of the Situation | Shewolfinthevalley - February 28, 2022

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