Sitting across from Alan and Chris Dawkins in their cosy conservatory on a sunny October afternoon, they both appear happy and comfortable, as if everything in their life is as it should be. But behind closed doors, Chris has a much more demanding role than simply being Alan’s wife. Alan has Alzheimer’s disease, and Chris has been his carer for the last three years.
There are 850,000 people living with dementia in the UK, and with each of these people having at least one carer, I’m intrigued to know, what is life really like for a dementia carer?
Morning routine
“Typically, he’ll wake up at about 4am,” Chris tells me, as she takes me through what a typical morning is like for her. “When he gets up in the night I have to get up too, to put the light on for him and show him where the toilet is. Then at around 7:30am he has a shower, and I have to turn the shower on and actually put the shower gel into his hands because he’s not sure what to do with it anymore.”
Chris also tells me how she has to help Alan prepare his breakfast each morning, as he doesn’t know where things are kept in the house anymore. “I give him the bowl, I give him the spoon and I open the cereal cupboard door, but he often just shuts it and starts looking in all the other cupboards. He always asks where the milk is too, but he doesn’t know which door the fridge is.”
It’s obvious that Alan completely relies on Chris, and I can’t help but wonder how she has time to get ready herself in the morning, when all her time is taken up by helping Alan with every tiny step of his morning routine. But she admits that sometimes it can just get too much for her. “Sometimes, if I’m in a bad mood, I’ll just tell him to go and get his breakfast himself because I know I’ll get half an hour’s peace while he goes and searches for everything, which I know is really mean.”
But when you think about how demanding the role of a carer really is, you can’t blame Chris for wanting to be a bit selfish sometimes. Unpaid carers like her, who support someone with dementia, save the economy £11 billion a year. So, what do they get back from that? Not much it seems.
Buddies
“It’s very difficult to find out what you should do and where you should go. It’s all very confusing, I never know who to go to or what to say,” Chris tells me. But she has taken this lack of support from the authorities and turned it into something positive, by setting up her own support group for people with dementia and their carers. She said: “One of my complaints was that there was nothing to do with Alan. I wasn’t very happy and I just needed something to do.” The group is called Buddies and was set up by Chris and her friend 18 months ago. The group runs twice a month and has been such a huge success that they are now in the process of registering as a charity.
Since setting up Buddies, Chris believes that services for people with dementia in Lincoln have blossomed. Many people with the illness become withdrawn and lose interest in activities and hobbies, but she tells me that Alan does something most days, in order to keep him occupied. “On Thursdays he plays golf, we go down for 10am and he stays there until 2pm,” she explains. “It’s the first dementia golf group in Lincolnshire and the man who runs it sends all the carers away, so they get four hours to themselves, which is just lovely.”
But despite enjoying some well needed respite from caring for Alan, Chris ensures me that they still enjoy doing things together as a couple. “We do go to the pictures and we go out for meals,” she says. “We like to go to the Kinema in the Woods because you can have lunch before, we’re always very busy.” Keeping busy appears to be the best thing for both Alan and Chris, as she tells me that when he’s at home he often doesn’t know what to do with himself. “When we’re at home, he moves things about,” she tells me. “He’ll move keys, books, letters, anything. And then I have to go searching for things that I can’t find. I found the butter in the knife and fork drawer at lunch time.”
Is there a positive side to dementia?
However, as difficult as it can be to see Alan so confused, Chris does admit that there is always a funny side to dementia. She laughs as she recalls a time when Alan had three pairs of underpants on, and how just last week he managed to get into a pair of her skinny jeans. “You have to admire the skill, don’t you?” she says, smiling. “It took 10 minutes to get them off him! One good thing about Alan is that he’s always happy to laugh at himself, he doesn’t often get upset with things that he’s done. We do have a good laugh sometimes.”
In the tiny snippet of Alan and Chris’ life that I’ve experienced today, I’ve seen first-hand how demanding it is to be a full-time carer for someone suffering with dementia. “It’s relentless, it never stops,” says Chris. “He follows me around all the time, it’s like having a stalker. And it’s so distressing when he doesn’t know me. It makes me think I’m doing all this and he doesn’t even know who I am, that’s very difficult.”
But unfortunately, Chris is not the first or last person to be affected by dementia. 225,000 people will develop dementia this year; that’s one every three minutes. And with no current cure for any form of dementia, it will sadly continue to turn lives upside down for many years to come.