I was 25 when my life really changed. For most people a lot is changing at that time anyway, it’s hardly a point of stability in a person’s life is it? Just leaving university, trying to kick start your career, changing jobs, making new friends/boyfriends/girlfriends, finding your way in the world and shaping the person you want to be.
This was working out fairly well for me. I had a great start to my career in luxury fashion buying and merchandising when we found out our Dad had been diagnosed with Alzheimer’s, aged just 60. His diagnosis wasn’t a shock, we knew that something had been amiss for quite some time and although no one ever wants to hear a damning diagnosis like that it brought some relief - a title to a chapter, a label, a framework to adhere to. As mum seemed to be struggling with just the ad hoc support my brother and I could provide I decided to take a break from London and move back to south wales to help her look after him.
What followed undeniably formed me more as a person than any career or job or relationship I have, or will ever have. I subscribe to the philosophy that you don’t know how strong you are until you have to be, very often we can cope with far more than we give ourselves credit for. To imagine an awful situation like caring for dying parents may feel insurmountable yet if you find yourself in the midst of it you become incredibly resilient and pragmatic. That’s not to say I didn’t struggle or feel like I was falling apart, especially later on when dads fraying temper resulted in violent outbursts and vitriolic tirades of abuse. Of course I worried at the time if I was doing enough or should I be doing something better, that ‘guilt’ haunts me still.
That time wasn’t all bad, my family and I formed some beautifully warm memories that I cherish. I was able to spend the final months of my parents lives with them, not everyone gets to do that. My dad, initially, became softer and more gentle after his diagnosis, reflective and grateful for all his life experiences. He would orate family stories whilst looking through photographs and tell us funny anecdotes and quips.
As the weeks went by the stories morphed from fact to fiction as the fine details of history faded and he replaced them with his minds own inventions. Mum found this far more frustrating as she had been living with it for far longer, the strain had been eating away at her more aggressively. When she was diagnosed with cancer we had the double whammy of nursing her and dad as well as managing dad’s reactions.
There were days where he was inconsolable, lucid in his realisation that his wife was seriously ill and he couldn’t help. These days were then followed with him being mercifully unaware of her situation but his actions were potentially damaging to her, him, all of us; knives in toasters, wandering off unaided, the list went on.
I tried to keep my spirits high, a big theme in our family is an inappropriate sense of humour, laughing inappropriately at our own situation, finding lightness in dark. I guess that this is a key part of the journal that I kept. I know dad would have found this all highly entertaining too; frequent games of hide and seek with house phones and remote controls, him making hot drinks in soup bowls and his increased swearing at hilariously timely moments - though in hindsight perhaps he was fully aware of this!
I know that everyone reacts to life’s ups and downs in many ways. You can put a range of people into the same situation and each one would fare differently. My mum, brother and I found different things about dads Alzheimer’s moving and hard.
In a similar way, the book has been met with differing reactions; some people find it more funny than sad, some more sad than funny. Some people have found it uplifting more than anything else and ten years on from our loss I would hope that My Mad Dad gives that message - that there is hope. Life doesn’t always turn out the way you imagined but that’s not always bad, there are silver linings in those clouds. I found new strength in caring, I found new love from loss, I was battered from the outside and rebuilt from the inside.
Writing my journal was cathartic though it was never intended for publication. The editing process was more soothing still, after a decade I found it healing to revisit my feelings and give myself credit for what I accomplished. But the summit of this release came from hearing the stories of others. At the time social media wasn’t the behemoth it is now and we were all quiet and private in our grief and trauma but since I have started to talk to people about My Mad Dad I have felt the hugs of others through the ‘Oh my grandma did that’ or ‘My goodness I felt like that too when my husband had dementia’.
I know I did everything I could, and you can too – no matter what life throws at you.
My Mad Dad: The Diary of an Unravelling Mind by Robyn Hollingworth is published by Trapeze in hardback, eBook and audio. Details here.