I often wonder what life would be like if my dad was still alive. If he had never developed dementia I imagine him still growing a few veggies, reading his books, sitting in his chair enjoying box sets of the old TV programmes he loved so much, watching the Arsenal (he would be happy with the way the season is going so far), listening to favourite music with my mum and them both singing at the tops of their voices, and regularly tucking into the meals he most enjoyed (traditional meat and two veg being the number one – he didn’t share my passion for pasta and curry).
Dad would be 86 now, and I think he would still have been pushing himself as hard as he could. My dad was never a man to give up or give in, including in the years that he lived with dementia. He always said that there was no such word as can’t. “Can’t means won’t, and won’t has to be made to,” he would say. An interesting idea to throw into the mix with the G8 Dementia Summit in mind.
Dementia robbed me of my dad. I can only guess what he would be doing now, I will never know for certain. He lies in a wooden box six feet under the ground; all I have left are my memories and the chance to imagine what life might have been like if we were still together. Of course we all have to die of something at some point, but a 19-year struggle with vascular dementia, a slow and often painful decline resulting in complete dependency finally ended by aspirating on your own vomit five times (resulting in a catastrophic pneumonia that engulfs your body over a four week period) isn’t, I would venture to suggest, the way in which most people would like to go when their time comes.
For my dad read many more mums and dads, grandmas and granddads, aunties and uncles, cousins, brothers and sisters and, because dementia can affect younger people too, sons and daughters. People from all walks of life, all ethnicities, religions and sexualities – no family is immune from watching a loved one developing, living and eventually dying with dementia.
Is it worse than watching a loved one living with any other disease or condition? I can’t honestly answer that since I’ve never cared for someone with any other terminal disease, but I can tell you that it takes a hell of a lot out of you. Even though you find strengths to compensate, they don’t make up for the deficiencies that can feel overwhelming, or help you to deal with the emotional rollercoaster that you find yourself on, most starkly illustrated by the sense of loss that pretty much every person I’ve known who has been personally affected by dementia will talk about.
In the future many more families will be experiencing those same feelings that we did. Alongside the emotional toll will come the financial toll, which I imagine will be talked about extensively by the G8 on 11 December. In truth, I suspect much of the impetus for this Summit and the popularity it has found with other nations is, ultimately, down to money. Dementia costs governments a fortune – more than cancer, heart disease and stroke combined in the UK alone – and it will only cost them more in the future if the predicted rises in the numbers of people living with dementia are correct. If they can find a way to treat the many different types of dementia better, or indeed cure or prevent even just the most common ones, it would have a huge financial benefit.
Any family would welcome better treatments, and even more so a way to prevent or cure their loved one’s dementia, but looking back over those 19 years with my dad what we really wanted more than anything in the world was to understand how to care for him to give him the best quality of life possible. We had little choice but to accept that he had dementia, and in a constantly changing landscape we didn’t have time to cling to hopes that he could be cured. We just wanted him to feel happy and well cared for.
As it happened, through luck or judgement, I’d say we actually made a pretty good job of that in the end, but I think of every family who are currently poking around in that dark wilderness of feeling totally baffled and bewildered and my heart sinks. Surely in 2013 we can offer people with dementia and their families a personalised plan of care that puts them, rather than dementia, in control once more.
Looking back at what I imagine my dad would be doing now if he was still alive and hadn’t developed dementia, I realise that even WITH dementia he could, and should, have been able to continue to do all of the things that he loved, even if they needed to be modified for him. A loss of memory is not a loss of life, and yet lack of awareness, understanding and knowledge puts up so many barriers to that golden aim of ‘living well with dementia’. All of those can, in some way, be addressed by the G8 Dementia Summit.
To the Health and Science Ministers, advisors, bureaucrats and business leaders at Lancaster House who will be searching for common ground and a positive way forward for people with dementia – potentially hitting a few stumbling blocks along the way – I think my dad’s message to you would be this:
“Can’t means won’t, and won’t has to be made to.”
Until next time…