Why I felt compelled to stand up for people with dementia
This is why Mark became a Campaigner for Alzheimer’s Research UK, so he can urge the government to kept dementia a national priority. Read his story.
Christmas was always the most special time of year for my family and me. My mum and dad did everything they could to bring the magic and excitement to our household for me and my younger sister, and I still have wonderful memories of how excited they used to get when we opened our presents on Christmas morning. It was a house full of love and happiness. I even remember my mum and dad having to call the doctor one Christmas Eve because I’d gotten myself into such a state with excitement!
The Christmas which has just passed is our second following my mum’s diagnosis of mixed dementia at the age of 58, just a few weeks before my parents’ 40th wedding anniversary. I won’t pretend that me, my sister or dad have handled the diagnosis well. It has placed great strain on relationships throughout our family – in particular her relationship with my dad, who is in effect my mum’s carer in addition to having a full-time job.
Such is the impact of dementia on me and my family that I have committed to take whatever small steps I can to improve the lives of those who currently have dementia, and who will be impacted by it in the future. That’s why I became a Campaigner.
My mum has always been so full of life and wisdom, a central figure not only in our household but in the wider family. She was our teacher, our counsellor, our financial advisor, our friend, our cook, our entertainer, our cleaner – our everything. She taught me how to iron and she taught me how to love. She was the life and soul of every party. Her presence brightened every room and her positivity, support and unconditional love has enabled me to live a full and meaningful life so far. The diagnosis and seeing her deteriorate since then has torn our family apart on every level, and the excitement of Christmases gone by has been replaced with fear and worry about my mum’s future. It’s heartbreaking to see what my incredible mum has become. I’m not 100% sure she knew it was Christmas Day this year, but I tell myself that deep down she knew, and there is still happiness there within her on some level.
I have my own children now, two beautiful boys aged one and four, and my mum has four wonderful grandchildren, something she would have dreamed about when my sister and I were younger. It has always been my goal to give my children a childhood as special as the one my parents gave us. However, there is a continuous undercurrent of guilt when enjoying time with my own family as I know that my parents are struggling to get through each day when they should really be looking forward to retirement. But I know that my mum would never have wanted us to suffer as we are, so I am doing everything I can to put my children first and keep sadness as far away from them as possible.
I still get jealous when I hear friends and work colleagues complaining about their mums interfering in their business, or talking about long chats with their mums on the phone to sort out their problems. I had all of that, and it was taken away in such a gradual and numbing manner that I hardly realised it was all disappearing. I am no longer able to share a meaningful conversation with her and ask for her advice on the many challenges which life brings. I do not want anybody’s sympathy, just to give you the briefest insight into the daily pain which a close family member’s dementia diagnosis brings.
However, this can’t be the end of the story for us. My mum might not be able to communicate properly, but there are glimmers every so often which make me certain that she and her wonderful heart are still very much with us.
There will be people reading this who may have similar experiences, and there will be those who will unfortunately have to face up to dementia in their own families in the future. If we do nothing, then we just accept that we will have to watch those we love be taken from us one piece at a time.
Despite taking a greater interest in politics in recent years and having opinions on a number of issues on the political agenda, I had never before contacted my MP to ask for attention to be given to a particular cause. I had previously feared that my voice would be too small and insignificant to have any material effect on the issues at hand.
However, I appreciate that it is somewhat selfish to ask for representation on an issue only when it affects me and my family personally, but I have taken the view that people can become more mobilised and have greater impact when they have first-hand experience of a particular set of circumstances.
Inspired by Alzheimer’s Research UK, this mindset led me to write to my local MP, on behalf of me, my mum, my dad and my sister, to ask that the government maintains its focus on dementia and continues its commitment to dementia research. To my surprise, I received a thoughtful response back from my MP who shared my concerns. He expressed the need to ensure that the government will give dementia researchers, charities and practitioners the stability of knowing that funding for research is safe for the longer term. He also has written to the minister responsible to pass on my concerns. I appreciate that I am just one voice, that this is a small step, and at this stage is just words, but at least it’s a step. And every journey starts with a single step.
The future is uncertain for me and my family and, to be honest, is probably not too positive. However, the way I see it, we have two choices. We can be passive and allow dementia to wash over us and leave us empty and broken, or we take small steps to improve the diagnosis and treatment of this awful condition for future generations to come.
I know what my mum would want us to do.
About the author
Mark Bennett is one of our Campaigners whose powerful voices are persuading politicians up and the country to get behind dementia research. Mark's mum is living with dementia. He wrote to his MP, Jeff Smith, about his experience and asked him to help keep dementia research a government priority.