When Keith was diagnosed with dementia, at first, he didn’t believe it. Fast forward a few years and he is hugely active in the dementia community. Now at a place of acceptance, Keith reflects on the steps he's taken to get there.
I was born in Lancashire, and have lived in several different places. My wife, Elaine, and I moved to Kent 26 years ago as this is where she is from. We have been married for 46 years and I love my wife more now than when I met her.
I have done many different jobs including carpet fitter and being in the navy. But I have spent most of my working life in 'caring' positions. I was a Citizens Advice Bureau volunteer, a bereavement counsellor, and a residential social worker in a children’s care home. And most importantly, I was a 'house husband' as well as my wife was the main wage earner.
I am a born-again Christian and enjoy participating in my local church. I also enjoy arts and crafts. I did cross-stitch, which is like a form of tapestry. My eyesight is not as good as it was now, so I also enjoy painting watercolours.
And I was diagnosed with dementia in 2016. I have Frontotemporal dementia.
Knowing something was wrong
I retired from my job in 2014, but over the next two years, I felt depressed.
Once when I went on holiday, I spent the first ten days not talking to anyone. That was not like me.
I also noticed I was doing strange things like putting the phone in the fridge. Looking back now, I realise that I was beginning to forget things in my last year of working.
My wife and I saw our doctor. My wife said, 'He is not the man I married'. That rang bells for the doctor. So I went to the memory clinic.
When I was diagnosed, I didn’t accept it for the first three or four months. What I had didn’t match up to what I thought dementia was.
I went back to the psychiatrist and said, 'I’m not happy with this'. But gradually I began to read more about it, and I recognised some of the symptoms.
Meeting other people affected by dementia
My first peer group meeting was very important. My wife and I went, and we were put in a meeting with lots of other couples. I found what people were saying was really interesting.
At the meeting, we were split into two groups – the people with dementia and the carers. In my group, people began to say how they were feeling.
I remember one man said that he might begin to cry. I really recognised that.
That meeting made a real impact on me, and I got so much out of it.
Negative experiences along the way
I had a really disappointing experience with driving.
When I was first diagnosed, my psychiatrist said that I was fine to carry on driving. But I wanted to do the right thing, so I paid for a driving assessment. And I passed. I also passed when I did another part of the test six months later.
But the DVLA sent a standard form to fill out to my GP. He hadn’t seen me. He said I wasn’t able to make decisions properly. And the DVLA then wrote to me saying I would have to surrender my licence.
I knew that the GP had made an assumption that was wrong.
I tried to get that overturned. But I got passed between my GP and the DVLA and a new psychiatrist (the psychiatrist who had given me the all-clear had left the memory clinic). It was really frustrating.
In the end I gave up. I really missed the car because it meant that my wife and I could go caravanning. I didn’t just lose the car, I lost my holidays as well. But I have let it go now. I now have my bus pass and my railcard.
Now, I have really accepted my dementia.
I know I am still me. I have changed. But I am still me. I think that not worrying about what I can’t change is a big part of that.
I do a lot of work now to help other people understand dementia better and to remove the stigma around it. I really enjoy it.
Becoming active in the dementia community
Now, I am an NHS Ambassador for dementia. That means I go in and talk to medical students and psychology students. I would love to go into schools and help children understand it as well. I am a 'Dementia Diarist', and work with DEEP as well.
And I am on the Alzheimer’s Society and Santander steering committee. I have also been part of interviewing panels for Alzheimer’s Society. On top of this, I do work with research.
Currently, I’m in one steering group with 3NDWG, and one for the NHS care plans/falls and I hope to become a NHS envoy.
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