I read a lot just now about dementia and Alzheimer’s, it seems to be my new hobby. Gone are the days of horse riding and evenings spent at aerobics – I now spend a lot of my spare time reading, writing and researching about this awful disease and worrying about my parents. Oh…. and juggling a business, a hubby and three small children. I have just read that government spend on dementia research was only £90 per patient per year in 2014, despite this cruel, dreadful illness costing us, the UK, £26 billion each year! I then read that in 2012/2013 Cancer Research received seven times the amount spent on dementia (Alzheimer’s Society, 2014). I have previously written about my lovely aunt who died last year from cancer, after a heroic, long battle and I know these things are not a competition, I know grief and pain and disease are horrendous to deal with, no matter what shitty hand you are dealt, but the imbalance of funding is surely a problem and needs addressing.
My father in law had a heart attack a few years ago at a very young age (mid 50’s) despite being young, fit and healthy. It was a real shock to us all and when we rushed to the hospital to see him – after he had been revived and brought back to life by the amazing paramedics in his home – we expected to see a shadow of a man, a frail, damaged creature in his hospital bed, scarred for ever by his brush with death. Instead, he was sitting up, looking well, rosy cheeked and smiling. He had had a stent fitted and was fighting fit again. He was discharged within a few days and has never looked back.
My brave dad had a brain tumour over twenty years ago, it was terrifying for us all at the time and he had to go through very invasive, long and dangerous brain surgery to remove the growth. The surgery left scar tissue on his brain, so he now has to manage his subsequent epilepsy, which he does, uncomplainingly, on a daily basis. It took him many many months to recover, but he did and he is still here and still going strong.
My uncle and aunt from Canada are visiting my parents (see previous blog posts) and we were discussing their plans with them over dinner a few nights ago. He plans to go and visit his brother who has been quite ill and had a liver transplant a few years ago. Wow, I thought, that’s quite a big thing….a whole new liver!
I have heard endless stories about people who are fixed and can start to live their lives again after they have been subjected to the wonders of modern medicine. People who have had new hearts, new knees, new hips, new lungs. People I have read about in the news who have had face transplants, or amazing skin surgery for burns victims. People who have been cured miraculously from Aids; new, fantastic technology that can seemingly make blind people see and deaf babies hear, not forgetting the fabulously realistic prosthetic limbs for our very brave war heroes. All impressive, amazing stuff we would have been astonished at 100 years ago, even 50 years ago, but it makes me sad and frustrated; if they can give a man a new liver and fix my dad’s brain why can’t they fix my mum too? Why can they not help to increase the blood flow to my mum’s fading brain? Why are they just letting her brain cells fade and die? Why has there been no break-through? No magic surgery to sort her out? Why has no one found a cure yet? Why? Why? Oh why?
I know the spending on dementia research is better now than it has ever been, but there is still a long way to go to get it anywhere near the level that is spent on Cancer or Heart Disease. Maybe it’s the fear of dementia and people just don’t want to talk about it. Maybe we all view it as an old person’s disease so we are able to sleep soundly in our beds at night, safe in the knowledge that we are years away from such a thing and that by the time we get old, of course there’ll be a cure. Perhaps things like my blog will make a tiny difference in raising awareness – awareness that this is not just for the old, that it can strike anyone. My mum was a young 64 when she was struck down with it and had probably been fighting it for a year or two before it became visible to us. I know of a man in his 40’s who has been diagnosed with dementia and he has two small children. I was researching an online website about dementia when I found a video about a man in his 30’s who is married with a small boy of about 8 and he has early on-set dementia and his poor wife is struggling to come to terms with the devastation of it, the impact of it on their relationship and on his role as a father. It is not just for the old. It is not just for the unfit, or the unhealthy, or the inactive or the lazy.
My mum was fit, was healthy, ate home-made food, kept active and busy. She did Sudoku every day, loved a crossword and seemed to juggle a million balls in the air all at once. So, when I read (very regularly at the moment) that we can reduce the chance of getting dementia by eating well, doing puzzles, exercising, I want to scream and shout and stamp my bloody feet! Mum did all those things, she did them because that was who she was, not because she had a fear of dementia or of getting old, she did all the things we’re supposed to do to balance the odds in our favour, to minimise the risk of getting any of the big, horrendous diseases and yet, here we are. We have a new addition to our family, an unwelcome guest, one that won’t get the hint and just f**k off. An ever-present party-pooper who lingers like a bad smell, or wafts around the room like a scary ghost we can all see, but one we dare not fully acknowledge. Are we just unlucky? Is it really that simple? Did we just pull the short straw in a draw we didn’t even know we were in? That seems to be the only answer we get right now as no one can tell us why she got it, no one can explain how she got it, no one can tell us how fast it will progress or how much longer she can live at home. Don’t get me wrong, everyone we have dealt with (except a few lazy nurses in the local hospital – see previous post Adapt and Cope) have been remarkable, but no one knows a bloody thing. No one can answer my “but, why her?” questions. No one can explain why it is my wonderful mother who has been floored by this cruel and debilitating disease. It is not fair and I want to scream and cry and shout those four words out all the time.
But life isn’t fair is it? As a child, we think it should be – we think that we are owed good things – if there are not enough Muller Corner yoghurts for all of my kids (as happened yesterday) and one of them misses out then my goodness, life is not fair! If I ask them to pick up their own dirty socks and put them in the linen basket each evening, then sweet Jesus…”Arrgghhh! It’s not fair!” I think until very recently, I too thought that there was an underlying fairness to life, that when the proverbial shit hits that proverbial fan then things work out pretty fairly. But, that’s not the case, is it? There seems instead to be an enormous amount of luck involved. My dad was lucky he had a great surgeon who was able to operate successfully on his brain tumour and that he wasn’t born 50 years earlier. My father-in-law was lucky the paramedics got there so fast and that someone in the very recent past invented stents to open up a heart’s arteries. My uncle’s brother was incredibly lucky to receive a new liver from a donor, lucky he was well enough to get through the operation and lucky the new organ was accepted by his body. My mum, has not been so lucky. She didn’t get an illness that can be cured, or that has a decent success rate with medication or surgery. She didn’t get a disease that has been well researched and is well understood around the world, with pharmaceutical companies clambering over themselves to make medicines to help halt its progress, or cure it completely. No, she got dementia and until there is sufficient funding into research so that someone, somewhere can tell me otherwise, all I can assume is she has very sadly but very simply been unlucky.