About twenty years ago, I was a newly qualified house officer working the Christmas period at Addenbrooke’s. Addenbrooke’s Hospital is up Hills Road, in Cambridge. Christmas Day was a very quiet day, but Boxing Day was very busy.
When I was caring for my mum, in the last few years of her life, it felt odd. The paid carers would come as usual four times a day. It would be hit or miss whether Mum would want to take her tablets, or even eat her breakfast. Towards the end, we tried very hard to vary her diet. But she would eat a few bites of some toast, and drink a bit of tea. And that was that. I used to end up feeling demoralised most of the time. I’d put the TV on for her, and she tended to stare blankly at the screen.
But it always struck me how tough it was for the paid carers. The care provider used to provide private hire cabs for them to get to their clients. They could not really rely on the public transport. In the last few years, the buses here in Camden had become most unreliable anyway. Even calling an ambulance on the last occasion led to a fifteen minute to wait to speak to a call operator. In the old days, that would have been more than enough time for a stroke to do its damage. It won’t surprise you to know that the whole infrastructure had deteriorated beyond my wildest expectation within the last few years. So much for the absurdity of ‘dementia friendly communities’ then.
I understand why children will want to put a parent with dementia into a care home. I was talking only this week with my GP (who happens also to be my mum’s GP) about how I was nearly driven to put mum into residential care. Her behaviours became wilder and wilder, and it became impossible for me to leave the house safely without running the risk of her falling over while trying to turn the TV off, or even wandering outside of the front door and never being seen again. In the end, what stopped me was the threat that she might catch COVID in a care home, and I might not be able to visit her. In the end, she did catch COVID, I transferred her to hospital, and she died. I was far too late to realise that she was in fact ‘end of life’. She did have a ‘good death’ – uncomplicated, but all alone. It happened at 2 in the morning. It was shocking, not surprising and totally inevitable.
I did try to go through the motions of pulling crackers with mum on Christmas Day. She certainly didn’t understand Christmas party hats. Cooking a special meal for her would have been a waste of time given her swallowing problems. Anyway, it wasn’t really her religion as she had kept on telling me during my childhood – although it was engraved on my mind that Jesus is a prophet in Islam. For that matter, virtually for the entire4 time, Mum never felt that she even had dementia. She never understood why we all wore masks in the pandemic. This ‘anosognosia’ is quite common for people who really have dementia.
Yes, Christmas felt like a lonely time. While mum was physically with me in our small flat in Camden, it felt like just another day. I would end up feeling exhausted, and not quite knowing when the next disaster would happen. Being a family carer was emotionally exhausting, but it left me concluding that despite the fact dementia is the cruellest disease possible I loved my mum so much.
Dr Shibley Rahman blog 