As a teenager I helped care for my grandfather who I now know had vascular dementia. I knew he was unwell but didn’t really understand the extent or why or what it actually meant. As much as it pains me to say it now, a lot of the time, I just thought he was being difficult and bad tempered and I lost my patience with him many times. Not a day goes by where I don’t think about that time and how I would have done things so differently. But unfortunately at that time (18 years ago) dementia was talked about very little and its far reaching complexities relatively unknown, even more so to a 12 year old.
My guilt at not being able to really help my beloved grandad when he needed it most was one of the reasons I chose to change careers last year and start working in the charity sector. Whilst I’ve fundraised for dementia charities in the past, I really wanted to do more and felt that if I could help someone else living with dementia my granddad might be able to forgive me. I now work at Dementia UK and everyday is spent helping families affected by dementia by providing specialist Admiral Nurses. They work much like Macmillan Nurses do for families affected by cancer; they provide that much needed support when your world has been turned upside down. And quite frankly they’re amazing, but of course there aren’t enough of them across the country.
This last week I’ve been completing an online course with the University of Derby with a view to learning more about dementia. And whilst it has been most insightful, it has also been heart wrenching in the sense that I now know so much about the cruel disease and how I can make a difference but the one person I would want to implore it all on is no longer with us, and that’s a bitter pill to swallow. I worry that he thought I was mean. I worry that he was in pain. I worry that he felt unloved. And these feelings are something of a revelation for me as I always thought the worst of it was him not recognising me. Whilst that pain was brutal, the feeling that someone I loved dearly felt alone, for me, is far worse, especially given my own experiences of feeling alone.
The course talks a lot about compassion and how it is at the core of caring for someone with dementia. Dementia is of course a neurological disorder but like mental health there is still a huge stigma attached to it and much of the information I’m reading about understanding it and how to care for someone with it, can be applied to mental health.
Below you’ll find a little video that particularly struck a chord with me. She talks about how people living with cancer are referred to as ‘fighters’ and much more favourably than someone with dementia. Similarly, those with mental health issues aren’t given the same consideration and admiration and we really have to wonder as a society, why this is.
Like dementia and cancer, mental illness affects the young and old. It’s a disease. It can kill. People living with mental illness, like those living with dementia and cancer have mortgages, they have jobs, and they have children to look after. They too have to fight every day and this needs to be recognised.
This isn’t a ground-breaking notion; but we need to be more accepting of difference. We need to be accepting of people who need more time, space and reassurance.
We need to take time to care for everyone.