John Ramsay was only 13 when his father David was diagnosed with early onset dementia. Here John, now 32, explains the impact the condition continues to have on his life
Dad was a hospital consultant at the top of his profession, a man who was defined by his intellect. But his memory was never very good. His mum (my gran) had a different form of dementia and died when I was around ten so I knew and had understood what dementia was like from an early age.
Then when I was thirteen, I came home from boarding school for the holidays and Mum told me he had been diagnosed with early-onset dementia. He was only 52 and, because the diagnosis came quite late, he was told to stop driving and working almost straight away. His whole identity was taken away from him, which must have felt so brutal. He coped by either denying there was anything wrong with him or blaming everyone else for it, even us, his family.
It was extremely upsetting. I remember feeling very sad but there wasn’t the same understanding of dementia then, especially early-onset. I didn’t know another single person my age who was going through this with a parent – dementia was all about old people, wasn’t it? If I told friends at school they didn’t believe me because Dad looked okay to them. Some even accused me of making it all up to get attention, which I didn’t react well to.
At home during school holidays Dad and I spent a lot of time just hanging out together. He’d always been a very funny man and at first he was still able to tell jokes, do impressions and make me laugh. We often spent time watching TV shows like Friends which he would never have watched before but really loved now. He also became quite religious and started going to church a lot. But he deteriorated quickly, each time I came home from school I’d notice quite a big difference. When he started going to a day centre, I sometimes went with him. Music was my life as a teenager (I was a music scholar at school) so I entertained the day centre visitors with piano and trumpet recitals. I even composed a piece of music for them called Approaching Storm.
Within a few short years Dad had a full time carer. But it didn’t work out – one day, the carer lost him and he ended up in hospital. Soon the only option left was a care home. Mum found one that specialised in early-onset dementia. It was very nice and Dad received good care, but he’d deteriorated so much by then that he had no idea who I was. When I got into Oxford University he was too ill to understand. Mostly, I tried not to think too much about everything we’d both lost, but when I saw friends my age doing normal stuff with their dads and thought about my dad…well, it was very difficult. I suppose I was already grieving his loss, although he was still alive.
For the next four years I visited Dad regularly in the care home, though mainly from a sense of duty and moral obligation. Each visit was the same; we’d walk around a bit, I’d talk a bit and I’d have a cup of tea with him, and that was it.
I was 22, in my final year at uni when Dad died aged 63. By then, dementia had dominated my life for ten years and afterwards I decided I really needed a break from it. I travelled, became a lawyer and tried to put it all behind me.
But I couldn’t. Eventually, I realised I needed to make something good come out of such a painful experience. I gave up law and I’m working full time on a game to help people in the later stages of dementia interact with others, and have fun too. The game is called Tovertafel (or Magic Table), it was invented by my friend Hester Le Riche in the Netherlands and I’m bringing it to care homes, day centres and hospitals in the UK with my brilliant colleague, Mehdi Bedioui.
‘ I still think about Dad and what happened every single day. When I got married last year, the music I composed for Dad as a teenager was played at our wedding, it was my way of bringing him close and remembering him. Losing your dad like that never really leaves you, but if I can help make a difference to other families, I’ll feel I’ve achieved something, not just for me, but for Dad too.’
John’s top tips
- Don’t look ahead and worry that you won’t be able to cope. It is important to accept that the dementia journey isn’t easy, and it might be very emotional, but if you prepare yourself, and understand that you are already in a grieving process, you will
- Focus on what your loved one – and you – can still do. They may have dementia but they are still a unique human being. Try not to let their condition define them.
What is Magic Table?
It’s a ceiling-mounted projector that projects simple light animations on to any surface specifically designed for people living with mid to late stage dementia. Players are able interact with the games via an infrared sensor. The games include, amongst others, bursting bubbles, catching fish and bouncing a beach ball — all of which can be played as an individual or a group. More information can be found at www.tovertafel.co.uk.