Tuesday, 28 February 2012

Early onset dementia: a carers view

arthur+martha is working at a 'Buddy Cafe' for people diagnosed with dementia - and their carers - in Salford. We're bringing together the stories of the many people involved. Some of these pieces will be interviews, others creative work. We're trying to trace paths through the jargon and confusion, towards understanding. This project is in partnership with Age Concern Salford and Salford PCT.

In this interview (part 1 of 2) Becky who cares for her dad (diagnosed with Early Onset Dementia) describes the impact that caring has on her life and place in the world. 

I went to a carers course the other day, I felt a bit out of place- being the youngest. Everyone else had a bit more life experience.

I was thrown into caring and didn’t really want to do it. Mum used to be dads carer, but she passed away nearly two years ago, so I do most of me dads care.

I’ve been fascinated by watching the whole group this morning (at the Buddies CafĂ©) its been an eye opener- there are people here further along the scale of dementia than my dad. To be honest I felt a bit scared seeing this, if this is where we’re going in a couple of years I’ll go crazy.

Tower of cards, with poetic texts describing life with dementia

I’m 24 and been caring for my dad for two years. You can gradually see it getting worse. He was first diagnosed when I was coming out of University. I had just graduated as a teacher. My mum struggled, so I had to get a job as a nursery nurse to fit around it and help out.

I found out about the services available to people with dementia after me dad came to this group. I had no idea of the services at the beginning, I didn’t know anything, didn’t know who to contact or even what dementia was. I had to go to the library; I had no idea of what I was dealing with.

It took months and months to get a diagnosis (and that was on top of a stressful 3rd year at University) and then another year before we got a proper diagnosis. When we got it my Aunt Vera helped me mum to find the proper services. When we contacted them they were really helpful, but we didn’t really know they existed before.

Over 1000 people in Salford are diagnosed with Dementia, I was absolutely shocked when I heard that.

Considering how good the services are, they aren’t signposted. The GPs didn’t really help. Once you know the services are there, they help and they point you in another direction when you need it. At the time I didn’t consider Age Concern. A 54 year old man, I didn’t expect Age Concern would be appropriate.

I get a lot of comfort from my Church, they all know dad’s not quite right, they say if he says something odd, to ignore it. I don’t feel judged by them, they sit and listen.

It’s just life now. I can see why someone new to it might find it taboo, but to me its just life.


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