Dementia arrived uninvited in my life in April 2016 when my Mum was diagnosed with Vascular Dementia/Alzheimer’s. My Mum had previously shown some early signs of forgetfulness and was struggling to finish her sentences. For someone who loved to talk this must have been particularly distressing. I cannot lie – at the time it was a shock to us all but it was also a naive, uneducated shock as we had no idea about what would unfold in the coming years.
Fast forward to August 2022, 3 1/2 years since Mum passed away and it doesn’t get any easier. My timelines are littered with stories about dementia, from the footballers whose lives have been taken far too early, to friends and family who pop up on Facebook with harrowing stories of their loved ones and their battles with dementia. It brings it all back to me.
No one prepares a manual for how to deal with someone with dementia – let’s face it, my immediate family, my two brothers, my dad and I were just making it up as we went along. Taking each day as it comes. It was challenging, traumatic, and upsetting to see the slow systematic demise of my beloved Mum.
I can honestly say it was the hardest thing I have had to deal with in my life and I wasn’t even Mum’s full time carer. Prior to the care home, that fell on the broad shoulders of Dad. I can only speak from my own perspective – what Dad must have seen and thought I can’t comprehend. Imagine having someone who you have been with for nearly half a century being slowly taken away from you. The woman you fell in love with being dismantled mentally and physically by such a pernicious, uncontrollable disease. The disease not only robbed Dad of his beloved wife, it robbed him of all his hopes and dreams, of growing old gracefully with Mum and enjoying their well-earned retirement.
In the aftermath I suffered from PTSD – the only word I can use to describe the experience is traumatic. Which is why I am determined to direct my negative experience into something much more positive.
How Do I Feel 3.5 Years On?
This time in front of a computer screen to write my thoughts has given me valuable opportunity to reflect. There are a lot of feelings and emotions bubbling around.
I feel glad that my mum is now at peace and no longer suffering at the hands of dementia. I am happy that Dad no longer has to worry about her care and wellbeing. I am incredibly sad that Dad has lost a wife, my brothers and I have lost a mum, and my kids and their cousins, a Nana. We took her for granted when she was well – she was certainly the glue that bound our family together. To quote Andy Bell, from Erasure “Don’t know what you’ve got ’til it’s gone”. That is certainly a true reflection now she is not with us.
I feel anger about how the systematic underfunding of the NHS has failed many people like my Mum who for years have paid into the system and in their years’ of need it has not really given back. I don’t blame those who work in the NHS – they suffer as well, trying to give the best possible care without the resources to do so.
I feel let down by the false pledge by Boris Johnson (to add to the growing list) in the last general election to fix social care funding – this has not happened.
I feel pity for those less fortunate than Mum who don’t have someone who can project manage their healthcare like my Dad did. Looking back at his big pile of notes shows how much time was spent ensuring that Mum got the best possible treatment. Countless meetings, calls and emails – my Dad held true his vows to Mum about “in sickness and in health”.
I feel great empathy for anyone whose loved ones are currently suffering with Dementia (yes, some people choose to use the word ‘living’ with Dementia and I am sure there are some who continue to lead happy and rewarding lives after diagnosis, but this is certainly not my experience). I particularly feel for those who had to deal with loved ones through the pandemic. Lockdown must have been so challenging, particularly not being able to share physical space with them and see them through care home windows.
I feel sad that many people will be forced to sell their own homes in order to fund Dementia care. My friend’s father remained in his modest home when his wife had to move to a care home, temporarily closing off rooms that he had no need for. Ideally he would have downsized but the authorities would have seized half the funds to help finance his wife’s care.
I feel that there is a real opportunity to push for better education and support for those affected by Alzheimer’s. In the early days of coming to terms with Mum’s diagnosis we felt so alone. There are amazing support networks out there including specialist Facebook groups, local specialist dementia facilities, friends and family, and local church groups. It is not just about caring for those with dementia, it’s also about caring for those who care for others with dementia.
The Future Hope
I have dedicated time this year and next to support Alzheimer’s Research UK. Their mission is to bring about the first life-changing dementia treatment by 2025. Their vision is a world where people are free from the fear, harm, and heartbreak of dementia. Whilst it is obviously too late for my Mum, I do think the time is now to help support our generation as we move from middle to old age. Most of my friends are now firmly in middle age; currently 1 in 9 people over 65 have Alzheimer’s, and this increases with age to a third of people who live over 85 years have Alzheimer’s. This cause is investing in our future health.
My first major challenge is to summit Kilimanjaro in September 2022. This is now just 2 weeks away. At the moment I am 53% into my ambitious target of £5,000. I have a long way to go but I am determined to get there. Thanks so much to the 71 of you that have already contributed; if another 61 people donated an average of £38 then I would reach my target. Not to mention that Red Tiger Talent have decided to match all donations made from August 1st until the date I return from the trek. Very much achievable! You can donate to my JustGiving page here.
Later this year and in early 2023 I will be putting the finishing touches to a book which chronicles my time with Mum and Dementia. It will be an honest account of my experience but I also want it to be packed with practical advice to support other people who have had to go through what my siblings, Dad and I had to go through with Mum.
0 Comments