I remember when Mum was having tests done about 18 months ago and none of us actually used the word dementia. Not for a while. We expressed our concerns to each other about her strange behaviour and also about her forgetfulness, but we all shied away from raising our deepest fears.
My dad tried to reassure us that it would all be okay. Mum was being treated for depression and the psychiatric nurses who were visiting her at that time thought her memory problems could simply be linked to her depression or an event like a childhood trauma.
As a family we clung to this for quite a while, but as Mum’s behaviour rapidly deteriorated and her delusions became more aggressive we got increasingly worried. I know I was privately terrified that it would turn out to be something much worse, and I now know that the rest of my family were also harbouring private fears. How awful that I was secretly hoping Mum was hiding some deep dark secret from her childhood that had come back to haunt her. Rather that than the truth though; than the stark, terrible truth that we were presented with following brain scans and consultant appointments. Even then, my dad didn’t mention the word dementia for quite a while. He told us there was reduced blood flow to the frontal temporal lobe of Mum’s brain and this was what was causing the problems. It was only some days or weeks later when I pushed him on what that actually meant that he quietly and sadly described Mum’s condition as Vascular Dementia.
This was when I started to research it, desperate for any information that would offer comfort or support. I scoured the internet for information and help, looking for blogs about dementia to see what other people were going through and how they were coping. I found the big sites, so the NHS website and the Alzheimer’s Society which repeated everything I already knew: that it was progressive, that it is the second largest type of dementia and that there is no cure; just treatments that may or may not slow the disease’s progress. I struggled to find stories about real people or advice on what help was available and how to access it. I wanted to find out about what care was available and what support I could try and find for my dad. I found this hard, much harder than I ever expected and indeed, 18 months on it is still incredibly difficult getting the support needed to keep Mum at home for as long as possible.
We had a social worker assigned to Mum last year and it took my brother stepping in and demanding action after 4 long months of frustrating inaction and shockingly poor communication before anything happened. Four months! Four months of my mum rapidly declining and four months of my dad struggling to cope on his own. How is that good enough?
Dad received a letter about two months ago to let him know that his social worker had moved on and was no longer working on Mum’s case but that the lady in charge, his boss, would be in touch and come and see my dad “soon”. Two months on from that letter and Dad has heard nothing. I am not surprised.
Once you have a dementia diagnosis it really feels like you have to fight the proverbial tooth and nail for everything and anything. Trying to manage this disease is hard enough; going from a spouse (or a daughter or son or sister) to a carer in what can seem like an overnight transition is devastating. Coming to terms with your new life as a carer whilst trying to manage your pain and grief is enough; having to coordinate and organise help, support, medical appointments and researching longer-term care at the same time is simply too much. My dad has never complained, he has stoically accepted his new life and gets on with things as best he can. However, I know that each and every day is a struggle; some days are more challenging than others and there is no way he can possibly think about anything else, other than the day to day managing of my mother.
So, where is the help? Where are the people to help him? Why were there not a team of experts and carers at his door on day one after diagnosis, ready to help him through the process of applying for financial support, or day care, or helping him choose a dementia-friendly cleaner so that he didn’t have to worry about the cleanliness of the bathrooms. Where was the support to advise him on the day to day practicalities of now being the full time cook, cleaner, laundry-person, activity organiser, dresser, ironer…. Where are the people to hold his hand and tell him what worked best for other people in the same situation? Where are the reports or stories showing all the precedents so that he can learn from others?
We got none of this. Instead, we got an inept and useless social worker who did nothing he said he would and caused my dad more stress rather than less, at a time when he needed nothing but help, support, kindness and understanding.
My experience of dementia so far tells me that as a society we are not doing enough. We don’t talk about it enough – it is not one of the enormously scary diseases people fear, as I believe that people think it’s for the old and let’s face it, we can never imagine ourselves as old until we get there – so it doesn’t get the attention it needs. Instead it is almost a whispered word, a “D” word that is feared.
Dementia poses a serious threat to our society and the necessary structures are not yet in place to manage the disease and support the carers – never mind find a cure for this awful thing. Talking about dementia more, raising awareness and taking the stigma out of it would help people like my dad, because surely then the pressure would be put on the government for more funding and the different NHS trusts would be encouraged to put better care in place with the necessary support structures established for people like my dad. At the same time, with an increased focus on dementia and increased funding for research eventually we may even find a cure.
Pie in the sky?
Perhaps, but I have recently read somewhere that more people than ever are now living for ten years or more after a Cancer diagnosis. People who are diagnosed with HIV are no longer planning their funerals – it is no longer a death sentence. Why can’t we aim for similar results for dementia?
That won’t happen without a raised awareness though, so, let’s get talking! Let’s shout about this awful thing from the rooftops, lets share stories and support each other through the tough days and try and laugh through the bad days. Let’s not brush it under the carpet or be ashamed or embarrassed by difficult behaviour.
My two older kids who are just 9 and 7 know what is happening with my mum and they often ask questions, which I encourage. They also never ever shy away from speaking to their granny on the phone (which is becoming increasingly difficult as the days and weeks pass due to the progression of the disease and its impact on my mum’s ability to speak and make sense of any words) and they don’t moan about the 200 miles we regularly travel to visit my parents; a trip we have done in each and every school holiday for the past 18 months. My elder two have learnt very quickly the importance of supporting your loved ones through difficult times and I am immensely proud of them for that.
If my kids can accept dementia and talk about it openly and freely, without prejudice and without fear then others should be able to as well. Talking about it openly and increasing awareness can only do good. This bloody awful disease needs tackling head on, it’s not going to go away and so we may as well face up to it now rather than put it off for another day. Another generation: My kids’ generation.
Dementia, you’d better watch out!