The complicated emotions of being a carer when you weren’t cared for
What do you do when you’re choc-full of blame, fuming with rage, burning with resentment and gasping with exhaustion, riddled with unanswered questions and seething with despair – but the causes of all these emotions are – be it literally or figuratively – gone?
I’ve found myself a figurative orphan at the ripe old age of 44, something that wouldn’t be ideal in any circumstances, but the ones which the universe has shat out on me make it even more miserable, galling and hopeless than I could ever have imagined.
When my mother died in 2020, I was more angry than sad, and rightly so. But I didn’t anticipate that less than four years later I’d be filled with righteous fury all over again, yet in very different circumstances. My father’s cognitive decline is, undoubtedly, not his fault. The way he has chosen (or more accurately, not chosen) to deal with it is.
The thing about being an adult, we’re told from the cradle up, is learning to take responsibility. We learn to wash our own clothes, pay our own bills, and eventually even buy our own socks (heaven forfend!), and when the time comes, those who choose to then take on the responsibility of raising their own children. Or they don’t.
My father was not a hands-on parent. Being of the pre-war (yes, that would be WWII) generation, he believed that child-rearing was a woman’s job. However, he was also lazy and cowardly, so even though he was completely aware of what a shocker of a job my abusive mother was doing, he refused to involve himself, instead using myself and my elder sibling as a buffer to shield himself from the worst of her violent narcissistic excesses. Yes, very gallant and protective. Reality hit him when I ran away at 14, and rather than risk me dropping out of the school system permanently he accepted full-time parenthood, a role that he took to with about as much enthusiasm as he had his marriage. Two rocky years passed before I moved out, followed by a period of increasing anger and hostility which spilled over into outright rage and a ceasing of communications as my ventures into the world at large pulled off the veil of what a crappy father he really had been. Time spent around friends with loving, interesting Boomer dads who actually talked to us, shared their hobbies and interests and created actual families who liked and respected each other was an education in everything I’d missed in my lonely, neglected childhood and everything I felt my father hadn’t bothered to give me. I hated him.
I ended up travelling in South-East Asia alone at 23 and decided it was time I took my first trip to my ethnic homeland, and in a fit of unusual optimism (I was probably stoned), invited my father to join me. His great homecoming after 25 years earned me the love and respect of my extended family, but dad and I fought bitterly, our first time in close quarters over a protracted period for nearly a decade. Eventually we mellowed. Something clicked (yes, beer was involved**) and Sri Lanka became an annual collaboration that evolved into time spent together back in the UK, at the theatre, cinema, cricket and of course the pub. Slowly, some trust was built, although it took regular blows (him encouraging me to stay with an abusive, violent ex being a particularly bad one). I toughed it out and tried to drag him into the modern world (women and men are equal, relationships shouldn’t be violent, it’s okay to be gay, etc). Al the work on our relationship came from me – not that this was a surprise considering what had gone before.
Still, I was delighted when he performed the traditional Buddhist hand-tying ritual at our wedding celebration the Night Before Covid. When the airports closed the next morning, nixing our planned trip to Sri Lanka that day, I had no idea I had basically said goodbye to the father I had, the work I’d put into our relationship, and the gossamer veil of self-deception that I actually had a real parental relationship.
Yes, Covid fucked everyone over, and my dad was no exception. Alone in his house for the best part of two years in his early 80s, he lost it. But before he lost it, he went on a little trip down memory lane, doing multiple things that hurt me deeply, broke my trust and proved that his selfishness was just as strong as it had been when he left us at the mercy of my mother’s vitriolic mouth and Chinese burns. Going behind my back to attend her funeral was just the start. Reconciling with my prodigal sibling, whose actions permanently damaged me, simply because she’d given him a great grandchild, clinched it. He was back to his old ways and I wanted no part of it.
Then in 2022, the dementia hit properly.
I was a mess of fury and concern, helplessness and frustration, as doctors and hospitals messed up his care following a bout of thrombosis and it became abundantly clear he was unable to take care of himself. Of course, once better he was let out and left to his own devices, with me helpless to intervene as he was declared to have capacity (NHS waiting lists n all). For 18 months I waited, knowing the other shoe would eventually drop, which it did on Easter Monday.
Since then, I’ve been a full time remote carer – getting up at 5am to speak to doctors and nurses, ensure he was fully cared for as he bounced in and out of hospital with repeated misdiagnoses, deal with his GP to get his driving license revoked, prod social services to get him rehab support and shopping assistance and do all the necessary power of attorney paperwork. On top of my job. And my life.
All this for a guy who made me spend every Sunday at whatever cricket ground he was playing at with nothing to do, no other kids, bored out of my skull and lonely as hell.
Something happened when he fell. The belligerence that made him fire the first cleaner I got him, that kept him in denial about needing any help, went away along with his ability to remember anything in a coherent fashion. Before, his short term memory was shot, but now everything is hit and miss. He recently asked me if I had ever been to Sri Lanka, completely forgetting our 15 years of regular trips, yet managed a detailed conversation about the cricket shortly after. There are good moments and bad, but not one where he acknowledges or thanks me for giving up huge amounts of time and energy to organize his new cleaner, carer, house repairs (roof falling in), car sale (he had a tantrum), personal alarm (he hates it) and doctor’s appointments – and all the day after Glastonbury so real fun and games. But I suppose why should he start now?
Of course, as his health began to decline, he could have taken steps to save me from all the stress and trauma of sorting his life out. He could have got his own cleaner, moved to sheltered accommodation, sold his car himself and acted like a grownup. But again, why start now?
Would cognisant him care about the impossible position he’s put me in? Making me into a reluctant carer of someone who never played that role for me? It’s hard to say. He used to say he never wanted to be a bother, yet never did anything to prevent it happening. He used to say dementia was the worst thing that could happen to him because he valued his independence so much, but it snuck up on him when he wasn’t looking. He wanted to die quickly, like his father – a swift heart attack, but has ended up like his mother, lingering in decline and incapacity. And no, he never visited her at all.
Now they are both, to all intents and purposes, gone, I think a lot about the things I’ll never know. Who if either of them, ever told me the truth about the circumstances of their marriage? Of why they hated each other from day one but never divorced? Of why, despite that knowledge, they persisted in having children? And what they could ever have possibly hoped that act would achieve?
As a child thrown into the world without care or guidance, unparented and alone, I knew I could never have children. Trying to care for myself has been enough work for me. Yet now I find myself with all the responsibility I’ve worked so hard to avoid, without even the hope or prospect of it coming back around in my favour, or enjoying the rewards of a job done well.
Life really is shit.
Apparently it’s normal for carers to be angry. We’re allowed to be resentful, frustrated and tired. But are we allowed to be regretful? Regretful that in that period of détente, when I was trying so hard to be the Good Daughter, as much for my own sake as my dad’s, I signed my life away on his power of attorney back in 2006? Would I have done it if I’d known then what I know now, that the story wasn’t going to have some happy end where he and I closed the gap in understanding that always plagued us? That he was never going to say he was glad he had me, not the cricket-player-doctor son he craved. That he’d never take an interest in my work and say I’d made him proud instead of telling me to get a real job. I don’t know.
I do try to remember the good things as I check his personal alarm battery and pay his cleaner. The amazing meals he cooked, how we laughed at old BBC sitcoms, the time he drove me to see Blur at Wembley Arena and ended up coming to the show! All the trips to Sri Lanka and time with my beloved late Auntie. Our theatre trips, singing along to Les Mis, Starlight Express and Fiddler on the Roof. Picking me and my friends up outside grimy Swindon nightclubs at 2am, no puking in the car! Ridiculous journeys on tiny country roads when I was at uni, how he’d swear when he got stuck behind a combine harvester (every time), and how he’d turn up at my sixth form boarding house with a fresh steak to cook for me cos he knew I couldn’t afford my own.
It wasn’t all bad. But it is still all too much. Being a carer is hard enough, but being a confused, conflicted and somewhat regretful carer I really wouldn’t wish on anyone.
My dad is in the last part of his journey now, and I’ll support him the best I can. I just wish he’d done more to support me on mine.
* Huge love and support to all the carers out there, whatever your circumstances
**(for more on this see my piece Lion Lager, My Father and Sri Lanka in vol2 of David Nilsen and Melinda Guerra’s excellent Final Gravity magazine)
Cultural Cuckoo 