Do your research to better help those you love with dementia 

It’s important, I believe, to do your research when family or friends develop any form of dementia. It helps you to understand, to be of real help and to prepare, as best anyone can, for the later stages. It’s said that ignorance is bliss, and you certainly come upon facts that upset you, but in my view being emotionally hit hard on occasions is a price you must pay if you don’t want to muddle through. The difficulties you face not only mean your loved ones benefit from your knowledge-infused care, but they also change you forever, for the better, in ways I can’t go into with anyone who hasn’t walked or is walking this path.

I’ve just read, in this useful article, that, ‘The life expectancy of a person with dementia is unpredictable, and the disease can progress for up to around 10 years‘ – and, well, my father has had dementia since 2006, possibly earlier, so for ten years at least. His actual diagnosis came later, though. Symptoms were subtle at first, and it seemed like there were few changes in a downward direction for years. They would come about whenever he fell or was ill with something not directly connected to his dementia. In the first four months of 2016, though, my father’s mental and physical deterioration speeded up, inevitably. This was because first his wife was hospitalised, then himself (after some time when, although he had family visiting and carers twice a day, he was alone and lonely too often). It was his choice to stay in his house, and he still had the capacity to choose for himself, but I’ll always maintain it was a damaging decision he made out of fear. Fear of going into a home.

My mum was a cheeky little girl judging from this photograph.

What’s in the past is done, though. Dad is comfortable now, happy with his wife next to him, and that’s all that matters. Love, that is. Being as happy as a person can be. Unlike any other illness, you know with dementia that the person has no chance of recovery but, still, there are moments to treasure and times when the person becomes more like the person you knew – in this case, my kind father who bought me comics as a kid – for minutes at a time. I took him and my mother some albums of old photos the other day, to prompt memories and stories to share with other residents and the care staff. Both because it’s a good thing to do and because it will help my mum get over her delirium, I’ve filled the room they share at the home with their most treasured personal effects.

My father during WW2.

Above all else with dementia, you should always act patiently, lovingly and conscientiously. The possibility of making happy memories with the person does not end until they are no longer with us. You can be pleasantly surprised. Hearing them laugh or seeing them smile can be such a reward, and I will never forget the joy on my father’s face when he finally got to be with my mum again, after over three months of separation. That’s a memory to treasure.

Whatever comes next, and I will always know I did my best for both my parents. I’ll need reminding of that soon enough, too soon I know, when sadness comes. There will always have been more anyone could have done with money or time or other resources – but do what you can, when you can, with all the effort you can invest. That’s all anyone can reasonably expect. And remember to make time for yourself as well.

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