Overcoming Caregiver Guilt

Kate lives in South London with her partner and two children. By day, she works in marketing and communications; by night (or whenever life allows), she writes about her father’s dementia and its ripple effects on her blog, Dementia in the Family. You can also find her on Instagram @dementiainthefamily, where she shares glimpses of this ongoing story.

I’m sitting in my car outside the care home where my dad lives now, the car drenched in the summer rain pouring down in huge splashing drops, me drenched in guilt. Guilt for dreading this visit. Guilt for not coming sooner. Guilt that seems to follow me everywhere these days, from home to work to this parking space outside my dad’s care home.

Visiting him in these advanced stages of dementia is tough. I haven’t been for a while — life has been busy and stressful. I’ve been feeling so thinly spread between work and caring for my two young children that I haven’t been able to find the time to get here during daytime hours. They call us the sandwich generation: between young children and aging parents. But if I’m the filling, I feel like the thinnest layer of anaemic-looking cheese.

I see my pale face in the car mirror, the dark grooves under my eyes. I need rest — but first, I need to get out of this car and go into the care home to see my dad. Every time I visit, I wonder if it’s the last time I’ll see him. Every time I leave, I cry.

There are so many layers to the guilt dementia brings up, even before you confront the guilt of handing over care to others. We had to do that when it became untenable to have my dad at home: wandering at all hours, falling, hurting himself. I know we’re lucky that the care home is even an option, and have some support from our local council here in London to pay towards it.

But it reminds me of the guilt you feel as a parent delivering your children to nursery to be cared for by someone else: someone who doesn’t love them like their family does, someone you must trust will respond appropriately to their needs while you can’t be there. I have ‘mum guilt,’ but I also have ‘daughter guilt’ now.

There was guilt even before he moved in here: about how often I was able to go and see him, to help with his care, take him out for fresh air. I can’t afford to give up my job. And would I want to? Caregiving is so hard: the day-in, day-outness of it, the endless patience and chores.

And then there’s the guilt that sometimes I just don’t want to go to see him. I don’t want to confront the changes in him. The man who looks like my dad but doesn’t talk like him anymore, who might not always know my name or remember my children, or be able to have a meaningful conversation at all. We used to love a good chat.

So here’s the thing: I am naming this guilt. Not to wallow in it, not to complain, but to give other people who have a family member or friend living with dementia the chance to name it too. Because guilt thrives in silence. When we recognise it, look it in the face, it loses some of its power. And we can begin to move through it.

I’ve learned that guilt doesn’t go away on its own. It needs to be answered. Not with punishment, but with self-compassion. Self-compassion, like self-care, isn’t optional. It’s essential. 

This can mean talking to someone you trust — friends, family or a therapist — about your feelings, even if you worry they sound ugly. Or even just naming your feelings to yourself, as I’m doing sitting here in the car park, or in a journal. Saying no when you need to. Lowering the bar. Letting yourself off the hook.

Everyone’s guilt surrounding dementia looks different. I know my situation isn’t universal.  Some people are caring for parents at home, some are managing alone, some live far away and feel helpless. Not everyone has access to care homes or support. This experience is deeply individual, but wherever you are on the path, the weight is real. And you’re not alone.

So please, if you’re struggling: don’t beat yourself up. This is one of the hardest and most disorienting things I have ever been through. It’s okay to feel guilty, or sad, or angry, or completely hollow. 

On this day in the car, the rain suddenly stops. The guilt doesn’t. Not fully. But it has softly receded. I get out of the car and into the fresher air, the trees dripping, the sky bright again. I go into the care home, sign in, go upstairs in the lift, and walk towards the lounge where my dad is watching TV with the other residents.

His face lights up when he sees me. I wouldn’t quiz him on my name, but he definitely knows I’m someone who loves him. 

We can’t talk much — he can’t find the words — but I give him a hug and we sit side by side watching TV together for a while. I show him photos and videos of my children on my phone. He smiles at them, screaming with joy on the slip-and-slide in our back garden.

I don’t stay long. I leave him smiling and go home to rest. The guilt hasn’t vanished. But like the rain, it has passed for now. And for today, that’s enough.