Dementia campaigner Beth Britton reveals why her father’s dementia journey shaped her life and compelled her to make a difference
Dementia came into my life when I was 12 years old and Dad started behaving a little out of character. More than 20 years later it remains a huge part of my life – and probably always will.
Of course, back then, I had no idea that Dad’s eccentricities were the first signs of vascular dementia. Aged 66, he’d retired after being a farmer for much of his life and we assumed he was going through a period of adjustment and would eventually get used to his new life. But he never did. Instead, he just got a little worse…and worse.
Incredibly, we lived like that for ten years, without any kind of diagnosis. Dad’s strange behaviour simply became a way of life. He piled on weight, didn’t want to wash or change his clothes, and wasn’t prepared to talk about what was going on. We had no choice but to muddle through, in the sure but sad knowledge that Dad just wasn’t Dad anymore.
Eventually, in 2003 Dad collapsed at home and suffered a serious stroke. Once he was in hospital, the full extent of his condition quickly became apparent to medical staff, though they didn’t immediately inform us, his family. One day Mum and I turned up to visit Dad and were told he’d been moved to a different ward ‘because he has dementia.’ When we eventually found him on the Elderly Mentally Infirm unit he was in a terrible state. We demanded to see the consultant who, thankfully, agreed to come and meet us straight away and explain the diagnosis properly.
Dad had vascular dementia, she explained, and wouldn’t be safe living at home anymore. Although the diagnosis came as a surprise, I also felt relieved to know what was wrong and just wanted to understand what would happen next. We had no idea how to find a good care home, but it was pretty obvious that the dementia care in hospital wasn’t good, and the sooner we could get Dad out of there the better.
We looked at various places and found one we liked, but after Dad had been living there for six months we were told they couldn’t cope with him anymore. Dad was sent back to hospital where he remained for far too long whilst the NHS and Social Services wrangled about who would fund his care. We had already found a new care home and were desperate for dad to move out of hospital, but we were powerless. In the end, it took three months for the funding to be sorted out – and Dad lost half his body weight during that spell in hospital.
We were very pleased with the new care home though and fortunate that the staff bonded with Dad, especially his key worker. Those relationships brought a lot of fun and laughter into his life and we all tried to make the most of the things Dad could still do. When Dad could no longer hold a conversation, we played music instead and found it really helped us to connect. Dad also loved sitting outside in the garden drinking cups of tea or being taken to the pub for a pint.
It’s easy to look back and wonder if you could have done more but mostly, I think Dad received very good care and had some very happy times, even when the people who were giving it didn’t have the resources or knowledge we have now. He remained in that care home for eight years and most of the time he was lucky enough to have the same people looking after him, which was priceless.
Behind the scenes however it was a different story. The home went through four changes of ownership during that time and countless changes in management. Eventually the care dramatically declined and, as we waited for what proved to be a damning report by the Care Quality Commission, we decided we couldn’t risk Dad remaining there any longer. By then Dad was doubly incontinent, completely immobile and had swallowing problems that needed careful management by staff who knew him well. Unfortunately, many long- standing staff were already leaving…
Whilst we tried to find another suitable home, Dad was rushed into hospital suffering from aspiration pneumonia. He almost didn’t survive but after a couple of weeks he rallied enough to be taken into another lovely care home we had found, where he remained for the last two weeks of his life, receiving phenomenally good care.
Dad lived with dementia for 19 years, in many ways it became the back drop to my life. When he passed away in 2012, two weeks after his 85th birthday, I realised I couldn’t just let the things I’d learnt die with him. I had to try to make a difference. More than four years after his death I’m proud to be considered a leading dementia campaigner. Helping people who are affected by dementia remains my prime motivation. I firmly believe that everything my dad went through should be used to inform, educate and influence others – it’s what Dad would have wanted, and it’s what I want too.
Two lessons I’ve learnt
• Trust your instinct
When you think there’s a problem, there probably is a problem.
• Care homes don’t need to look like hotels
I’ve seen more than my fair share of care homes over the years and the ones that look like swanky hotels aren’t necessarily any better than the ones which look a bit worn. Personally, I’d rather chose a home which pays its staff well (because they’re more likely to feel valued and stay) than one which pours money into cosmetic improvements.
You can read Beth’s blog here.