What if you don’t want to visit anymore?

I’ve been thinking a lot over the last year or so about this question: what if you feel like you can’t visit your loved one with dementia anymore?

I find it so hard to go and visit my dad in the care home. I start to dread it in the days leading up to a visit, and when I’m there—and afterwards—I feel so sad, often angry, thinking about everything he’s lost, everything we’ve lost. That heaviness can last for days.

Because I work full-time and have young children, and since you’re not supposed to visit in the evenings, it’s difficult to find time to go except at weekends—when the visit casts a pall over my whole weekend.

I’m not sure he even recognises me most of the time. I often feel that my visits unsettle him, disturbing the comforting rhythm of his day.

When I turn to Google, I see that others have wondered the same thing. Of course, they have. I came across a Reddit post—“I feel guilty because I don’t want to visit my mom”—and the comments showed me just how many people are in the same boat.

Some people are dealing with parents who are aggressive towards them. I’m lucky that I don’t face that—my dad is so affable. But it still hurts every time I see him: the gap between the man I remember and the man in front of me. A stranger in a familiar body. Someone who looks like my dad but can’t have a conversation with me anymore, can’t always understand what I’m saying, and often struggles to find words in response.

So I’ve been thinking hard about the reasons I keep visiting:

1. I want to see for myself how he is
Dementia shifts constantly. There are days when he’s a little more lucid, and we can share a small chat, though these are rare now. And there’s only one direction this is going. Still, it feels important to witness for myself how he is, what state his mind seems to be in.

2. I want to check that he’s okay in the care home
It’s hard to gauge. I ask him how he’s feeling, whether he’s happy, and he always says yes. But I wonder—would he tell me if he wasn’t? Did he fully understand the question? Or might he have forgotten moments of distress? It’s a horrific thought, knowing that care home mistreatment does happen—sometimes not far from where we live in London. By visiting in person, I can at least look at him, see how he seems, and reassure myself that he is cared for.

3. I want to give him a hug and remind him who I am
I always hug him when I arrive and when I leave. I don’t know how many hugs he gets these days, and he’s my dad—I’ll miss hugging him when he’s gone. But sometimes I do wonder if he knows who this stranger is. I always greet him first, wait for him to smile, and then go in for the hug. It’s usually a relief when he says “Oh hello!” in a way that sounds like recognition, though I fear it might just be a conditioned response. I don’t quiz him on names. Instead, I show him pictures of my children, repeating their names in the hope they’ll find some place in his memory, in the hope that we all will.

4. I want to be a good daughter
This is hard to admit, but part of why I visit is duty. I want the staff to see he is loved, that I care. I want to answer people’s questions with first-hand knowledge. I want to ease the guilt I feel about him being in a care home at all. These reasons may not feel noble, but I hope voicing them helps someone feel less bad about feeling the same way about visiting their loved one with dementia.

Writing out these reasons gives me clarity. It reminds me why I go, even when it hurts.

And yet, I completely understand anyone who feels they can’t keep visiting. You have to listen to yourself, to your limits. Sometimes it means scaling back visits, or taking a break until you have the bandwidth again.

For me, going with my sister helps if we can arrange it. If you can, visit with a sibling or a friend—it can make the experience less painful.

I also try to lower my expectations. I just sit with him, talk a little, hug him, and accept that leaving soon after is okay. Sometimes, I’ll simply watch TV with him in silence. That is enough.

Does anyone else have tips to share—either about not wanting to visit, or about managing visits in the later stages of dementia?