For Keith Oliver the diagnosis of dementia when he was just 55 seemed incomprehensible. Six years on, he is a dementia ambassador for Kent and Medway Health Trust and involved in educating others about the condition.
Liz Vercoe talks to Keith about what it's like living day-to-day with dementia.
Hearing the ‘D word’
At first Keith Oliver’s doctor thought he’d had a minor stroke. It would have explained Keith’s symptoms of loss of balance and mobility, and the forgetfulness.
But a series of tests, including MRI and CT scans, revealed the truth: Keith had the early stages of Alzheimer’s Disease, the most common form of dementia, where a build-up of ‘plaques’ in the brain affects its functioning. As yet there is no cure.
‘It was a shock,’ recalls Keith. ‘I thought of dementia as something that affected very old people sitting in nursing homes.
'I feel fortunate in that it took only 7 months to get a firm diagnosis, because the uncertainty is more draining than knowing what you are dealing with. It was very hard on my wife Rosemary.'
Giving up work
‘On April 1, 2011, my career of 35 years in teaching came to a close,’ says Keith. The primary school headteacher could no longer operate effectively and knew he had to let go. ‘I was having trouble meeting deadlines and I could only concentrate on one thing at a time. The staff were getting worried.’
‘Probably the hardest thing was giving up my job,’ Keith admits. ‘But I have been invited by a local school to go in and listen to the children read each week. I love it.’
‘When I look back at the person I was, the job I did, the things I was able to do, it feels like a different person rather than “me before”,’ Keith explains.
Living with dementia
Talking to Keith, 4 years on from his diagnosis and in a week in which he has delivered two lectures on dementia in London, you’d be pushed to know anything is wrong.
But listening to the large amount of planning that has to go into making everyday things work smoothly, the enormity of the condition becomes startlingly evident. For example, Keith has the subject areas I’ve asked him to cover in front of him and written reminders of what he wants to say.
Keith and his wife thought long and hard about whether he should carry a help-card explaining he has dementia, but in the end decided that the benefits outweighed the risk of being exploited.
'It’s helped,' Keith enthuses. 'Once I bought a rail ticket after forgetting my colleague was getting them. My card helped me explain and get my money back. You can order cards on the Alzheimer’s Society website.'
Watch Keith talk about living with dementia:
An extra burden on his marriage
Keith fully acknowledges the extra burden his condition places on his wife: ‘We’ve always decorated together and last October we got round to redecorating a room,' Keith says. 'It was very fulfilling, but Rosemary did about 70% of the work as I have problems with spatial awareness. Even filling in forms falls to Rosemary because I find it hard to decide what to answer.'
'My inability to retain what I’ve just been told means I say the same things to her, which must be very irritating. And it’s frustrating for me.
‘I would advise every couple to strive to continue to use the strengths in their relationship. And early diagnosis does mean you can get your will up-to-date, and your finances and health documented and discussed with your family.’
And yet despite all these challenges, Keith manages to keep a positive outlook on life.
'These days I’m putting a lot of effort into doing anything that will help get rid of the stigma attached to the word dementia or will help improve services for people diagnosed with it. I find that stimulating,' Keith says.
'After diagnosis and a few weeks of support many people feel they fall under the radar. So with Kent and Medway Health Trust Partnership backing we have set up a forget-me-not group. It’s a support network and several of us give talks and consult on services.’
‘I am determined to do things I enjoy and find interesting, and to live life to the full.’
And does this work? Keith laughs: ‘I suppose you could say I now spend a third of my time on dementia-related activity, a third of my time doing fun things and a third of my time recovering from the other two!
‘Life has changed enormously,’ Keith reflects. ‘But Rosemary and I have always said when one door closes another opens. We enjoy an annual trip to Australia, and I can still get travel insurance as long as I travel with a named person.’