I drive to visit my father on a cold and rainy Sunday afternoon, the car sloshing through puddles on the potholed roads. I park in the tiny empty car park in front of the care home and sit for a while at the wheel, psyching myself up before getting out and walking up to the nondescript boxy two-storey building. As I’m buzzed through the doors, the familiar smell of bleach and school dinners hits me. I nod at the lady in reception and walk over to the lift to go up to the first floor where my father’s little room is, where he lives his life now.
The walls on this floor are custard yellow, and the staff have tried to make the place look jolly with pictures of flowers or prints. I walk past my father’s empty room and down the corridor towards the lounge, catching sight of a print that reads: “Home is being with a very loving family”. It hits me like an accusation: why isn’t your father at home with you? I feel like I’m performing the good daughter by coming to visit, but the really good daughter would have given up her job to look after her father with dementia, wouldn’t she? Oh, the guilt, the guilt.
I feel self-conscious in my interactions here and worry the staff judge me even if they’re nothing but kind and smiling. I recognise this comes from me / my upbringing / society rather than them. I want to hug them every time I come for doing this incredible service for us, for him.
The residents on my father’s floor are sitting around on the mismatched sofas and armchairs that line the lounge, watching a strangely melodramatic film on the big TV. I don’t recognise any of the actors, and I wonder what channel this film could possibly be on. Is there a special channel for people living with dementia? Most of the residents are asleep or dozing in any case.
My father sits in his outdoor coat watching with serious concentration, but he always smiles when he sees me. I sit down next to him and watch along. Just being near him must be enough. We can’t really talk as he can’t find the words to make sense any more. But his smile lighting up when he sees me matters so much.
I glimpse his thumbnail looking awfully long and ask to look at his other nails; his hand when I take it in mine is baby soft. He’s always in here now, this warm, bright, institutional space. He’s not lifting anything or cleaning anything or doing any of the many odd jobs he was always busying himself with around his house and garden when he was well.
I’ll ask the receptionist to make sure his nails are cut when I leave. I wish this had already been noticed and done, but they’ve got so many people to look after. It reminds me of when I’d pick up my children from nursery and they’d get home and gulp down water or I’d notice a fat wet nappy and wish someone else had noticed earlier, wish I’d been the one looking after them to do these things myself. This is something you have to live with when you’re not able to be the caregiver all the time.
We’ve been instructed by my father’s nurse to start thinking about what we want for the end of my father’s life, not that he’s close now, but so that we’re not caught unawares when it actually arrives. Looking at funeral plans, deciding where we want him to be at the end – in the hospital or in the care home? We choose the latter for its warmth and familiarity.
Even though I’ve been thinking about his death ever since his dementia got serious, this conversation with the nurse somehow comes as a shock to me and upsets me for days afterwards.
When I say I’ve been thinking about his death, I really mean it. I find myself imagining the eulogy I would give him. It’s strangely comforting to think about because a eulogy is a celebration of his life and achievements, and who he was before.
Friends ask me how he is, and I tell them he’s in a care home now and he can’t really hold a conversation most of the time. They look sad, and I don’t know what to say next, and neither do they. It’s all so sad, but it’s not a time that has any real acknowledgement of loss; it’s not a time with set condolences (“I’m sorry for your loss”); it’s not a time with rituals like mourning.
The only ritual we have now is me coming here to the floor with the custard walls and hugging him and sitting with him. The film ends, and he wants to go to his room, where he gets into bed. It’s mid-afternoon; we’ve been told people with late-stage dementia sleep a lot, and it’s normal, but it always worries me somehow. It’s still light outside despite the slate grey rainy sky, and people out there are going about their Sundays, watching football, drinking in the pub, cooking roast dinners.
He pulls his bedsheet up to his neck and lies stiffly under it, still in his outdoor coat and shoes. He says he doesn’t want to take them off, so I leave them. I ask him if he wants me to close his curtains, and he says yes. It all feels wrong. I give him another hug and say goodbye, switching off the light for him as I go.
Have I done enough? All I can really do is go to see him and hug him and quietly connect with him while I can. I hold onto this.
As I sign out of the building and cross the car park to my car, I’m composing that eulogy in my head again, thinking of funny anecdotes to tell, recalling lessons he taught me. I imagine his friends and family sitting listening and nodding and laughing. They’ll come up to me afterwards and give me warm hugs and tell me more stories to add to my bank. And I hold onto this too.
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You can find useful information about grief and dementia from Dementia UK here.
dementia in the family 
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