Grieving for 22 years and now he’s dead
22 years ago this month, my Dad suffered a catastrophic brain injury after a 7 hour long seizure. He had just turned 45. I was 13. For three years, my Mum, brothers and I cared for him at home, hoping we’d somehow be able to give enough love and devotion to repair the parts of his brain that had burned away, but - despite his extremely diminished mental capacity - he’d retained all his strength, and after too many bruises and hands around our throats, we had to accept that his needs were too great.
It’s incredibly hard to find residential care for someone who is young and physically well but severely mentally incapacitated. They’re too much work and trouble. He was prone to violent outbursts, had no ability to form short term memory and was driven by his most primitive needs and desires. He needed 24/7 1-1 (often 3-1) supervision to ensure he wasn’t a danger to himself or others. Eventually, after a few failed placements, we found him a care home an hour and a half from where he lived. Over the next two decades, we all tried to make lives for ourselves but this black cloud of suffocating sadness has followed us through it all.
If you’ve ever had a family member suffer with dementia, I imagine you have a good idea of what it is to grieve for someone who is still alive. My wonderful Nan had some mild cognitive impairment for a few years but quickly descended into full dementia after losing her husband, my incredible Grandad, who she’d barely spent a day apart from in 60 years. For two years, the whole family threw themselves into, first, caring for her in her home, then in their homes, then a care home, until she died. We knew the end was coming and we tried to do our best for her (though it never feels enough).
When someone you love has altered beyond recognition and has little to no quality of life for 20+ years - if you want to make any kind of life for yourself - you can’t dedicate yourself to them in the way you can with a shorter illness. You can make regular visits and be present for them when you’re there, even if they’re incapable of being present for you, but in between times you have to file it away in your heart and mind and close the drawers.
Being constantly confronted by the immense cruelty, injustice and senselessness of their condition is unbearable and so you survive by compartmentalising. Any peace or joy you find in your life is so fragile, ready to be thrown into chaos whenever you have to make care decisions, get reports about assaults they’ve inflicted or accidents they’ve had, or when the council wants to make yet another financial assessment to see if they’re willing to continue part-funding his care or if they’re going to make you sell your family home to pay for it.
There are years when visits are frequent, when you find renewed energy for your sense of responsibility to that person. And then there are years when you channel your energy into either keeping your head above water in bad times or allowing yourself some unburdened enjoyment in good times. That is, until the guilt claws at you enough to make you refocus on your duty.
Every visit is a roulette. Some days, he sleeps the whole time you’re there. So you sit beside him in his urine-stained room until enough time has passed to make the 3 hr round trip not feel ridiculous. Some days, he is tortured, scared and angry - asking the same question (that you don’t have the answer to) every 20 seconds - begging to come with you and crying for his mother, unable to remember that she is dead. And some days, he has a disarming sweetness. He knows you. He calls you lovely. He says that your son - his grandson - is the most beautiful, clever child he has ever seen. He seems suddenly aware of his situation. He lifts the veil for a moment - enough to make you panic that he’s been here the whole time - and that you’ve abandoned him without cause. The gut punch of guilt makes you want to vomit.
Guilt is urgent and uncomfortable. You can’t live with it for very long and so you find ways to assuage it. In our case, it was by remembering that my Dad left the family twice for other women he’d been having affairs with. ‘If he’d not come back’ - we’d say to each other in less charitable moments - ‘he’d be some other person’s problem now.’ When being honest with ourselves, we knew that - whatever his past crimes - he’d had more than his due punishment. The good years outweighed the bad and had earned our love and loyalty.
This time last year, I was 2 months pregnant with my second child and was hit with debilitating sickness that left me unable to keep down water or care for my son. I was given a month’s reprieve before the SPD left me unable to walk. In that month, I visited my Dad. He was so gentle and loving. In the last few years, his age and declining health had softened him and our visits were all cuddles and compliments. I promised him I’d come to visit again soon and, before too long, I’d have another grandson to introduce him to.
The rest of the pregnancy went by in a blur of pain and bedrest. My darling second son was born in December. When I felt he was able to cope with longer car journeys, I fixed a date to finally visit my Dad again. Two days before we were due to go, the car failed its MOT and we had to wait for repair so the visit was postponed. Three days later, he was dead. I’d thought about this day a lot over the years. Sometimes, I’d wished for it - for all our sakes. I imagined it would feel like the last stage of the same grief I’ve carried for 20 years. But it’s not. It’s new, raw and distinct. It’s made me realise that the man I really knew was not the father I’d had for 13 years but the man he’d been for the entirety of my adolescence and adulthood. It was him I was grieving for now. I’d never realised before how much i’d valued the small offerings of paternal affection he’d been able to give through these latter years and I have such regret that, in his final year, I’d only managed to see him once. You’d think I’d have learned that tomorrow is never promised. But I don’t think we ever really do.
He died six days ago and today would have been his 67th birthday. I know that soon I will find peace in the fact that he is out of this purgatory and I’ll find freedom in finally being able to move forward and repair wounds that have been kept open and salted for so long, but - for now - I am just very sad.