Talking about dementia
My mum can no longer do anything for herself. She needs someone to get her dressed and out of bed, feed her, remind her to swallow when she’s eating or drinking, brush her teeth, wash her hair, change her and push her wheelchair.
Mum is 65-years-old and is in the advanced stages of frontotemporal dementia (FTD). She was diagnosed at just 59.
This is the reality of dementia.
FTD is a rare form of dementia which can affect a person’s behaviour and personality, as well as their memory. There is no cure and we don’t know why my mum has it. She has lived in a care home for the last year as she is too ill to be at home with my dad and their house isn’t suitable for her needs.
I believe that, as a society, we need to talk about dementia and be honest about it. When I talk to friends or colleagues about my mum’s dementia, there are some questions which always come up…
How old is she?
People expect those with dementia to be old. I recently started a new job and when I mentioned about my mum in the office, I walked out and overheard one of my colleagues say to another, “that’s the same age as me!” in shocked tones.
It isn’t a condition which only affects old people. I feel so frustrated every time I see the stock pictures of little old ladies which accompany dementia stories on the news. Meanwhile, there are around 40,000 people in the UK with early-onset dementia, meaning they were diagnosed while under the age of 65.
Does she know who you are?
Almost everyone asks me this question at some point and I really do understand why. It’s what sets dementia apart from most other horrible conditions – seeing your loved one forget you. But, as upsetting as it is, I can list many things that have been in some ways worse than Mum not recognising me.
These include being shouted and sworn at by her, receiving phone calls from the dementia day centre threatening that she would have to leave if her behaviour didn’t improve, seeing my children unsettled when she paced around, her hiding faeces around the house after she became incontinent, hearing her shouting “I hate you” to my dad when all he had done all day was look after her.
Many people think dementia is just about memory loss, but it’s not.
How’s your mum, is she getting any better?
It’s nice for people ask how my mum is but unfortunately, there’s not much to say. My stock answer these days is a very dull ‘still with us’ as I’m not sure what else I can reply.
The dementia journey can be a long one and it is all downhill. My mum isn’t going to get better.
Is it hereditary?
Hereditary forms of dementia are extremely rare, and we’re fairly confident Mum isn’t one of these cases. She’s just unlucky. A lot of research still needs to be done into working out why people get dementia. Eventually I hope research will also find a way to develop treatments to slow it down and ultimately cure it.
The only people who can really change how dementia is viewed is us, the families of those who are affected. We need to start being more honest about our experiences and telling anyone who will listen, not just others going through it. The more awareness and understanding there is about dementia, the more funds we’ll hopefully see going towards research so we can bring an end to this horrible condition.