The cruelty of dementia will affect one in three of us. Here, Robyn Hollingworth, who was just 25 when her dad was diagnosed with Alzheimer’s, tells her story.
Cared for, carefree, caring, carer: where do you see yourself on this scale? I think we can span all of these in a lifetime, from young to old, depending on where we are and who we are with. In my mid-20s I felt I had shaken off the parental shackles of being ‘cared for’. I was independent and no one depended on me. It was a time of louche living and lots of laughs. I worked in the buying office for Liberty, the coolest store in London, and was holding my fledgling career together between a haze of gigs and parties.
I wouldn’t say disaster struck unexpectedly, because I knew what was coming. We – my mum, my big brother G and I – all knew dad had Alzheimer’s, the most common form of dementia, and it was getting worse. There was no cataclysmic event that dictated that change, but he had been diagnosed only a year before, aged 60, and his descent was pretty rapid. Dad’s deterioration was weighing on my mind and eventually I realised it wasn’t going to get better. I knew I had to deal with it head on. So I made the decision to move back to Pontypool in south Wales, from Camden, north London, to be closer to him and mum. That decision didn’t seem like a big one at the time, but in retrospect it was life-changing.
The moment I walked back into my ‘home’ with my belongings slung around myself, I knew it was all different. There would be no putting my feet up, parents spoiling me with snacks and treats and letting me take control of the telly schedule. I found myself in a parallel universe where roles were reversed. The house looked like my house, the people looked like my family, but here I was administering medication, cooking meals, cleaning toilets, tying shoe laces. All of this while dodging domestic bullets (saving the world from another knife-in-toaster disaster) and horrible questions (“When’s your mum coming home from work, love?” Asked just days after her untimely death, which itself was only three months after I had returned home).
Of course I realised the irony of the role reversal then and there – at 25, I was a parent to my child of a father, who became utterly dependent on me for his survival. But I didn’t foresee the ways in which this short phase of only several months would prepare me for later life. Dad’s suffering (and I don’t hold back in using that word) was mercifully short. Mum passed away after a battle with cancer that she had kept hidden from us, and within a few months dad followed her. The period in which my brother and I were both back home and looking after them left us like the odd family: two parents depending on two children. They raised us to be independent and then came to depend upon us.
The phases of dementia for dad were quite clearly marked. First, he started to repeat stories (only ever the good ones) and they became peppered with inaccuracies, then some blatant untruths – he filled in the bits of memory stolen by Alzheimer’s with some fanciful embellishment. If you didn’t know about his diagnosis you may have been forgiven for assuming there was nothing wrong, but we knew, we could see the cracks. Then the cracks widened as he forgot names and faces, times and places. There was the one day where he went out wearing one of mum’s cardigans, did his errands at the post office attired in purple mohair. Then there was the revelation that while he was in care (mum’s death disoriented him so much, we had to seek professional help) he had been attempting to write to one of his best friends to tell them that he was being held against his will in an institution. Heart-breaking though this was, it was further compounded by the fact that the man in question had been dead for more than 30 years.
Though this period in my life left me battered and bruised, hollowed and harrowed, it also gave me a core sense of achievement, a rock solid base of, ‘Yeah, well I can handle pretty much anything life slings at me now’. Not that it always felt so calm. I felt wretched pains of guilt; could I have cared more, should I have cared differently? I don’t feel angry about what happened though. This happens to us all at some point: seeing a loved one pass away, losing a family member, the death of parents. But ours was a good sort of awful situation. We got to be there, we got to spend that time with them. Not everyone gets that, do they?
What goes around
In the end, the return home to care for my parents had a bittersweet taste of life going full circle – caring for them in ways that they would have cared for me, seeing them out of this world after they had seen me in. Even now, life continues to surprise and astound with its weird and wonderful ways. On what would have been dad’s birthday, I spoke with an agent who wanted to publish the diary I kept at that time as a book. Then, as the ink dried on the contract, my husband and I found out that I was expecting our first child. In February, I was in a recording studio in Clerkenwell reading (actually choking on) my own words for the audiobook as our energetic unborn son did little flips inside my tummy. Being cared for and caring now had a third dimension.
Of course, this brings new waves of feelings. I don’t want to term them as grief but I suppose you might. I am sad that my parents never got to become grandparents. I am sad that I never got to ‘get’ that element when you fully understand what your parents went through raising you. The empathy you feel after sleepless nights with newborns and call your mum half-crying to say, “I’m sorry I put you through this”.
Then there are the questions I cannot get answers to. Did mum have morning sickness? Was I an easy birth? A difficult baby? I don’t know, so I make up the answers. I am also sorry that my children will never have them as grandparents, that’s so crap. They will have wonderful grandparents in the shape of my in-laws, who are giddily waiting on the sidelines for their grandson to arrive, but they won’t know my parents, they will only have tattered old photos and nostalgic stories. They will never know the touch of their hands or their smell. When grappling with motherhood I will never have my mum and dad say to me with a semi-vengeful joy, “Oh it’s OK, you were way worse than this!” I will never be able to embrace that side of the relationship with my parents where you fully understand how much they gave for you to have life. So I find different things upsetting now. Everything takes on a different shade of sadness and nostalgia.
At some point this summer, our son will enter the world, ironically a street away from where my mum and dad met and then lived together, in Chelsea. His first screams will be within distance of their old front door. I feel that in some way they will be there, my mum and dad. The in-laws will be hurtling down the motorway to be there and my brother and his family are eagerly awaiting the new addition too. So, you see our son already has an army of carers who will, in turn, show him what it is to love and to care.
My Mad Dad: The Diary Of An Unravelling Mind by Robyn Hollingworth (£16.99, Trapeze) is out on 19 April.