10 June 2021, day 10 of the 100 Day Project embroidering Mum’s well-worn smock I posted the following words:
I’m sitting here quietly over a cup of coffee with Mum, while I organise the next bit of embroidery.
This is a picture she did last summer before she stopped drawing or painting. She took part in the 100 days project, doing a painting a day .. but just stopped at about day 83. And could not be persuaded to do any more. With hindsight I wonder if her brain was already deteriorating?
It was around Christmas when she said a few things that sent me down the rabbit hole researching early stages of dementia. The Alzheimer Scotland website was hugely helpful. Nowadays Mum won’t draw any more, but she enjoys looking at her pictures from last year. I’ll enjoy transforming them into embroidery.
That all seems so long ago now, and I find it hard to really recall what a vibrant and creative person Mum was before dementia. Everyone’s dementia is different, but from what I know, it seems like it has developed quite quickly with Mum. It felt as though she was desperately trying to keep it at bay for a while (we’ll never actually know how long, or know how she was during that long year of 2020 when we were hardly able to spend any time with her), and during this period it was exhausting for her. She would sleep a lot in the afternoons, and went to bed really early at night. But then, once she accepted that she had dementia, perhaps as soon as she had the diagnosis, it was like the flood gates opened and she changed almost daily. Each day felt like a huge loss to me, like bits of Mum were disappearing. It took me many months to get to a point where each day I could accept her for who she was that day, without being sad about what was already gone, and what else we might lose.
Back in early 2021 when I first was minding her, we established a daily routine which started with me peeping out the window to see when she drew back the sitting room curtains to indicate she was up and awake, and finished with her heading off to bed at about 9pm. I spent most of my working hours across the road, at my laptop, and all mealtimes with her, with lunch being The Main Meal of the Day. Initially Mum could still manage making lunch (though often it involved something I had batch cooked at the weekend. But by early February, it was clear she was struggling with this seemingly simple task she had done every day of her life for about 70 years. She has a Rayburn, which can be such a forgiving way to cook – but it was more often that I’d come through for lunch to find a pan of VERY salty over cooked cabbage, and the fish pie (or whatever) still in the fridge.
Making lunch, even if it is just heating up pre-prepared dishes, consists of several discrete tasks, such as:
- put plates in the bottom oven to warm up
- take the pie (or whatever) out of the fridge and put it in the top of the top oven where it’s hottest
- get the cabbage out of the fridge
- cut the cabbage up
- find a pan
- put some water in the pan
- put a pinch of salt into the pan
- put the cut up cabbage into the pan
- put the pan on the hot plate on the Rayburn
- replace the rest of the cabbage in the fridge
- keep an eye on the cabbage so it doesn’t overcook.
It became clear that Mum could only manage one task at a time. And once that task was complete, there was no guarantee that the next task would happen. There was a disconnect in pulling things together, and an inability to work through a number of connected tasks to make up a whole. I just wanted to protect her and look after her, so I told her not to worry, and gradually it was accepted that I would make lunch each day. We tried some other options. I desperately wanted Mum still to have some agency, so she could feel like she was still managing and independent – we discussed lunch plans over breakfast and I wrote a simple list for her; I would nip through at coffee time to ‘check in’ and see how things were going. But essentially, Mum no longer had the capacity to prepare lunch independently.
She LOVED her food still though. It was one of the few pleasures she could still enjoy in life, and so I strived to make her meals as delicious and nutritious as possible. I developed techniques that allowed me to maximise my time at work, and still produce a tasty two (or sometimes three) course meal each lunch time. I considered writing a cookbook for carers, or at least sharing my tips on this blog. But none of that happened. Life happened. And that was fine.
Do get in touch if you have anything to share, about getting old, about caring for others, about embroidery. Really about anything.
And I’d be very grateful if you would consider making a donation to Alzheimer Scotland. It might be the lifeline that someone else needs when they are trying to make sense of a world that seems to have developed a glitch.
Shewolfinthevalley 
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