Living with Dementia

Dad, 82 years young.

Here is the story of the last few years with dad in his garage workshop, visiting the Ace cafe where they dated and the brilliant nurses and carer’s that have helped mum and now dad.

Ronnie was the steadiest man you could imagine. He was an engineer and liked to plan everything to the finest detail.

He was always home exactly on time and he used to spend hours in his workshop, which he kept immaculately. He made his own stereo speakers and even designed and built a special door-stop using pneumatics. He had what you might call a practical intelligence.

Ronnie retired on the dot of reaching 65 and he and my mum, Winnie, used to spend all their time together. They loved to go walking.

Ronnie, who lived in the same street in Burnham, in Buckinghamshire, throughout his life, kept himself tremendously fit. He did press-ups and sit-ups and manufactured his own weights using water containers. His mind was always active too.

His perfect evening was to sit in his chair and read through the Encyclopaedia Britannica. Ronnie just loved facts and he had a superb memory. His specialist subject was World War Two, Hitler in particular. We used to joke that he should go on Mastermind with Hitler as his specialist subject. He would certainly have been a useful asset to any pub quiz team.

Living with Dementia

But three or four years ago Ronnie started to change. He started forgetting little things and began to fall asleep at the table during meals. At first we thought it was just the effects of old age, but we got a diagnosis and it turned out that he had Alzheimer’s Disease.

For the first couple of years the decline was quite slow. Ronnie was still able to do things like dressing himself and feeding himself. But by the beginning of last year it was getting too much for mum to cope with. They’d always been a loving couple, but his behaviour, which had always been impeccable, started to become more erratic.

Eventually we decided that the best thing for Ronnie was to go into a home. It wasn’t a decision we took lightly and we looked at lots of places, some very good, others not so good.

The home we settled on, Oakwood House, was great. They looked after him beautifully. But it was hard leaving him there for the first time in April last year. My mum told me that Ronnie’s first night away was the first night she’d ever spent alone, having shared a room with her sister before she married Ronnie.

We made Ronnie’s room in the home as comfortable as we could. We put a picture of a Vincent Black Shadow, the motorbike he’d ridden in the 1960s, on the wall. Even when dad couldn’t remember people’s names, he was able to talk about the bike. He pointed out to nurses where the crank shaft was and how different bits worked.

Another thing we did was take in a harmonica. Dad had a collection of about five or six, including a lovely, top-quality Hohner I’d bought him for his birthday 15 years or so earlier.

Playing a harmonica was something he’d always done. He wasn’t professional standard, but he was proficient. After a while in the home, dad had declined to the extent that you had to hand him things like food. Otherwise he didn’t know they were there. “I didn’t know that was for me,” he’d say, as someone passed him a meal that had had been lying on the surface beside him.

It was the same with the harmonica. He wouldn’t pick it up on his own. But when someone put it in his hands, he was still able to play a tune. He could do God Save the Queen and a few others.

Mum and dad had always loved music, especially classical, and they used to go to concerts. It was a big part of who Ronnie was and, even when he was fading in other respects, it was a part we could still see glimpses of when he was handed the harmonica.

By the beginning of this year, Ronnie started to go downhill more rapidly. He could no longer use the harmonica. His muscles wasted and he became incontinent. He couldn’t do anything for himself. Ronnie developed big bed sores just below his back and, by the time he died, aged 82, in March, his quality of life was poor. In a sense it was a relief to us that he didn’t have to go through it all any longer.

Ronnie died holding a nurse’s hand. When the funeral directors came to take him away, 15 or so staff lined up to form a sort of guard of honour. Several of them came to his funeral. It was very touching because they obviously liked Ronnie and I think that, despite the effects of the Alzheimer’s, they got an inkling of what a nice man he’d been.

I’ve always photographed things, since I was six years old. It became my profession. So it seemed like a natural thing to document Ronnie’s decline after the dementia was diagnosed. Because it’s what I’m trained to do and what I feel comfortable with, it made my visits to the home easier to deal with. It was easier than having a conversation with Ronnie towards the end.

If I’d been a counsellor, I suppose I could have faced the emotional issues in a different way. But photography was my way of coping. I wanted to show what a kind and wonderful man my father was and what Alzheimer’s does to a person.

Living with Dementia.. Links to other articles

An Exhibition at London’s oldest art gallery Andipa

Daily Mail Article on Dementia

Sky TV Interview

Slide Show of all images Living with Dementia

Short Documentary film on Living with Dementia by Neale James

Living with Dementia An Exhibition

Mark Seymour is available to cover in a documentary style your children, your family or any particular subject that you would like professionally documented by a National Geographic Photographer