utilities

Why I felt compelled to stand up for people with dementia

Mark Bennett

After witnessing the impact of dementia on his mum, Mark Bennett felt he had to do whatever he could to ensure other families in the future were saved from the devastation of the condition. 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.

5 Responses to Why I felt compelled to stand up for people with dementia

  1. Raymond Staff 27 February 2018 at 11:17 pm #

    My family is in the same boat Mark fantastic letter, not much help out there, I find it very difficult day by day, families need more support,

  2. Carol Clayton 28 February 2018 at 9:12 am #

    Good Bless you and your family Mark I lost my dad twelve years ago after having the disease of six years and brother to Alzheimer’s on 2.1.18 both very painful losses to all of our family. My father in law also has Alzheimer’s and I help my mother in law take care of him he visits a day centre two days a week which allows my mother in law to regain her strength for the following days ahead. some days are very hard but as a family we try to be strong and help each other as much as we can.

    The government needs to do more as more and more people are getting dementia and we really don’t know why. The most unlikely people who live healthy lives go to the gym don’t drink and take care of themselves are being diagnosed with this dreadful disease.

  3. Jayne Palmer 28 February 2018 at 9:13 am #

    Mark , this is such an accurate and honest account of the impact dementia has on a loving family. Our world has been turned upside down too. Our lovely Mum was diagnosed with Lewy Body Dementia at 67 and nobody can imagine until it happens to you what a family has to go through. Thank you so much for raising awareness with the Goverment on behalf of all the families struggling to deal every day with this wretched disease.

  4. Mrs VJ Smith 28 February 2018 at 12:08 pm #

    Hi Mark that was a sensible story. I have had it through my family and I truly understand you.
    I wished I wrote a book about my dad he had Alzheimer’s Decease. He died in 1990.
    I have siblings that have or had Dementia also relatives. And myself I was diagnosed last
    August 2017 Dementia Frontal, I am in early stages and on medication to slow it down.
    I could see all what you and family and friends are going through, it is so hard. And now I have my husband, children, grandchildren and friends having to go through it again with myself.
    Mark I don’t mind if you use my e-mail to contact me at any time. I feel for you and your family the same way with mine. Thank You.

  5. Mary Williams 1 March 2018 at 1:00 am #

    I have a wonderful partner who has been my rock for over 25 years…we got together after my first marriage broke down… I went to visit my sister in the centre of Paris ..he said he’d see me there… And he did in style….. He called to tell me he was I Paris and making his way towards my sisters apartment…then he called to say he was there… I went into the street…in the snow to see him walking towards me…. And I knew he loved me…it was like something out of a movie…
    This is what I hold on to
    Andy was diagnosed with Alzheimer’s in 2014… But things had been going wrong before that.,,obviously…with hindsight
    Suddenly I had to grow up….and did all tjhe practical/legal things which was hard to do…
    Now I have another role…I’m a carer….
    We have a routine which works ..mostly…I’ve always said to andy that he’s on the spectrum…so a routine is good for him…
    Andy celebrated his 60th birthday on the 25th February
    Who knows where life will take you…
    Mary

Leave a Reply