Living with dementia magazine July 2009 issue

Trish Davies was just 38 when she was diagnosed with vascular dementia.  As someone who enjoys life's simple pleasures, she refuses to let dementia get the better of her.

Asked how she felt on being given a diagnosis of dementia aged just 38, Trish Davies says,

'It was a relief. I just thought, 'Well, I'm still alive. There are a lot of people worse off than me. I've got two loving daughters and a loving husband, we'll find out more about it and see what we can do.

'I'm not the kind of person to give up and let things get the better of me. As long as I've still got some control and everything's planned that's okay.'

This positive attitude runs through the whole family. Trish's husband, Kelvin, and her two teenage daughters, Chamelle, 17, and Jadeelee, 16, are equally upbeat about their situation.

The girls in particular emphasise how close the family is, and believe if their mum hadn't been diagnosed with vascular dementia, they wouldn't have been as close. Now, they can no longer imagine life without dementia.

Kelvin says,

We try to live by the simple rules, and because of that, we don't feel we've missed out on anything.

The Davies family live in Nantyglo, South Wales, where they have beautiful scenery on their doorsteps. They do lots together as a family, enjoying plenty of days out on Barry Island and going for walks locally.

Kelvin says,

'I used to be a teacher but when Trish was diagnosed I didn't go back to work. We cut our costs to suit. It's been years since we've been on holiday, but the children both have outside activities and a social life, and we try to live as normally as possible.

'Our diets are second to none. And now we just have to make choices. For example, we talked about having either Sky TV or the internet, and we all went for the internet.'

Pulling together is what the family seems to do best. Since Trish's diagnosis, it has been imperative to note down daily events in a household diary, which is kept on the kitchen table. Routine is important, as it ensures Trish knows where she is.

She says,

'If I haven't heard something mentioned or seen it in the diary then I don't know if I'm coming or going, and it can affect my emotions. I don't like things being thrown at me. Things have got to be structured and organised. The girls have been doing their exams and if they come in from school at an unexpected time I'm thrown. I'll say, 'What are you doing home?' instead of, 'How lovely to have you home,' and it's not their fault. I don't want to feel like that.

'Kelvin and the girls see my illness more than I do. But if something is wrong or there are any grievances, we sit around the table and talk. We're friends as well as family. And we laugh about things. We might find my slipper in the fridge or tomatoes in the freezer, but a frozen tomato isn't the end of the world.'

Occasionally, Trish feels as though she has let the girls down, but is clearly proud of the way they are coping. She says,

'The girls are coping marvellously. They've had to grow up at an early age, and they never argue about it or lose their temper with me. They've got all the patience in the world. They used to say, 'Mum, you already told us that.' Now they just repeat things as though they'd never told me.'

Chamelle, 17, has just finished her AS level exams. She says,

'We've grown up with it and we're always there for mum and keep an eye on her. We don't think, 'What if?' because we're happy. Jady and I couldn't wish for better parents.'

Kelvin is keen to make life run as smoothly as possible for Trish, and is good at anticipating her needs. He says,

'Trish has a lot of insecurities and needs to have rocks to hold onto, and those rocks of confidence come from the children and myself. She takes what we say as absolute. If she lost faith in us, she'd be lost.

'It can be very frustrating watching your loved one deteriorate and going through pain, but I try to keep things as normal as possible and have a laugh every day. When I get a smile on my wife's face, that keeps me going.'

Trish, now 45, says,

'Sometimes I'm not even aware I've got vascular dementia. I open the curtains, I see the beautiful sky and sea and hear the birds and I think, 'I'm alive.' What I'm living for is what I've got now, and what I've got now is enough.'

For support please visit Talking Point, our online forum for anyone affected by dementia.