This week sees the launch of an inspirational Dementia campaign with glossy celebrities singing the Beatles classic “With a little help from my friends” and there’s a (surprisingly young) woman describing how she copes since receiving her dementia diagnosis.
“At Christmas when you get your Christmas tree lights out, a couple of them don’t work, well that’s kind of what dementia’s like” explains Gina.
The campaign encourages us all to be a little more considerate and patient to those living with Dementia by becoming a Dementia Friend and wearing a special badge. And the people with Dementia also wear a badge so you can spot which ones they are and be nice and patient with them. And we can all “live with Dementia” and not notice too much of a change in the ways of being except a few amusing quirks here and there.
I feel positive to see this cruel illness pushed to the forefront and studding with a few celebrities like Amanda Holden and a bespectacled Ray Winstone can only be a good thing. Perception of, and care for, mental illness is pretty shocking in this country and Dementia doesn’t seem to have the same, oh I don’t know, prestige/glamour/pathos that Cancer, AIDS and Battersea Dogs Home seem to engender.
The campaign has jarred with me though. I feel uneasy that Living with Dementia is portrayed as only slightly worse than Living with Slightly Quirky Habits – an eccentric idiosyncrasy;
“My husband finds piles of socks, hidden in places where you wouldn’t imagine to find socks”, Gina laughs.
My father is in the advanced stages of the Dementia and while I’m not knocking it one bit, the whole campaign made me feel sad.
Sad, because it doesn’t matter how many badges my dad pins on, he is not going to get by with a little help from his friends. My mother lays out clothes for him so that he doesn’t forget to dress. She has to tell him dozens times that it’s the morning and time to get up. He asks for a coffee, even though she has just placed one next to him.
He has been drifting away from us for years and I’ve given up trying to remember the last time we spoke or laughed together properly. Our last goodbye? I’ve no idea. The brain deteriorates in an unpredictable way; crumbs that are hardly detectable over a few weeks, then, quite suddenly, big chunks fall away. It is taking over his body; he shuffles and his hands cannot rest. He sleeps around 18 hours a day
My father looks at me smiling but vacant. He has no idea who I am and yet can pick out an incorrectly placed apostrophe in a newspaper article.
I ask him “How are you, Dad?” he repeats it back to me in a strange robotic voice; “How are you, Dad?”
Sad, because I wish I could get my Dad back, even just for an hour, even to the place where Gina is; still hoping to be a good mum to her children, putting socks in odd places and listening to 70s music that takes her back to happier times.
But most of all, it made me feel sad for the woman who is his full time carer, my Mum. There’s no special badge for her. Before my Dad was diagnosed, he handled everything financial; she had never paid a bill in her life. Now she has to deal with everything and regularly and nervously discusses ISAs with “nice people at Santander”. She has days when the emotion is overwhelming. Once she started crying in the queue at Waitrose, and people just looked away embarrassed. She says she misses Dad and that she feels like a widow but with her husband still there. She says it’s worse than a bereavement.
I know she’s not the only one. Hundreds of thousands of people are full time carers for their husbands, wives, mums and dads. I wish there was a badge for them that says “look I didn’t really think things would work out this way and I’m sorry if I’m being a bit slow with the parking ticket/online service you provide/mobile phone but it’s all a bit new and overwhelming so can you just be a bit patient with me today?”
These carers deserve more than a badge, they deserve a bloody medal as well as our unending patience, respect and kindness.