Taking my six-year-old to see his grandfather

My son came with me to visit my dad in the care home for the first time.

I had been so worried about bringing my children there — a projection, I think, of my own feelings about visiting. I was afraid they’d find it too upsetting, to see how my dad had changed, and to be in a place where so many people are living with the more advanced stages of dementia.

I had asked my children if they wanted to visit their Opa (that’s what they call him). My daughter, who is eight, has always said she doesn’t want to go, and I’ve respected that. My son, who is six, has always said he would like to see Opa again.

My son had a closer relationship with my dad than my daughter did. While my mum used to come to my house to look after my daughter before she started school, I used to take my son over to my parents’ house. By then, my mum wasn’t able to leave my dad home alone anymore — his dementia was already visible, though not as advanced as it is now.

My son loved going there. My mum had millions of toys, gave him chocolate buttons, and he had his own special cup with his name on it. My dad would watch him play, sometimes joining in a little, sometimes singing along to nursery rhymes. My son never seemed to register that there was anything different about his Opa. He didn’t need him to have a fully functioning adult brain; he was just happy to have him there, smiling, increasingly distracted, as my son got on with his playing.

Even though my son said he wanted to visit Opa in the care home, I still had reservations. I didn’t want him to be upset by what he found there. Often I visit during the week while he’s at school, or on a Sunday when I drop both children at my mum’s. It must be strange for him — to have seen his grandad all the time, and then for him to seemingly disappear. I’ve explained where Opa is, but he does ask about him.

On a short winter Sunday just before Christmas, after lunch, I told the children I was going to see Opa while they stayed at home with their dad. When my son said he’d like to come too, I thought: well, why not?

Before we left, I reminded him that Opa’s brain wasn’t very well, so he probably wouldn’t know who he was. He said he’d just tell him. I explained that the other people there also had dementia and might seem a little different. He said he’d say hi to them and wish them a merry Christmas.

I also warned him that the care home sometimes smells a bit strange. My son, like me, has a very sensitive sense of smell — and isn’t afraid to loudly announce it. I explained that sometimes people there have trouble getting to the toilet in time because of their illness. He nodded and took it all in his stride.

When we arrived, we went up in the lift to my dad’s floor. I had to explain why the mirror was covered — because it scared people who didn’t understand what it was. My son was simply interested.

My dad was still having lunch, so we sat in armchairs in the hallway to wait. My son whispered that it did smell a little strange, but he seemed perfectly content, looking at the pictures on the walls.

After a few minutes, a nurse wheeled my dad down the corridor in his wheelchair. We sat in his room and I said hello, explaining that I was his daughter and that this was his grandson. I showed him photos and videos of my children — carol concerts and nativities. My son asked what he wanted for Christmas. My dad said, “Yes!” My son just smiled.

I could see my son studying his grandad, but he didn’t seem worried or upset. We didn’t stay long. Then we went back downstairs and got into the car.

I told my son that sometimes I feel sad after visiting Opa, because I miss the way he used to be. He said that was ok — that it’s ok to cry if I want. I often tell him that. I wish someone had told me when I was a child. I spent years bottling up my emotions, believing that crying was not ok.

I said that Opa was probably quite different from the last time he saw him. In my eyes, he has changed so much. But my son said the only difference was the wheelchair.

All my son’s memories of his grandad will be with dementia. I still carry a younger dad in my mind — a dad who could talk, who could help, who could take care of me.

On the way home, my son said he wants to teach Opa his words and his numbers. I know exactly what he means. He’s learning these things at school, progressing so quickly. It’s hard to encounter dementia and accept that there will be no more learning, no more forward movement — only moments, perhaps, where something briefly returns.

What I’m trying to say is this: if you’re wondering whether to bring your young children to see a parent with advanced dementia, maybe give them the opportunity. If they go, they might just be ok.

Our Admiral Nurse told me I’d be surprised by how resilient children are, but I hadn’t fully believed her. Friends advised against it. Others told me they were still disturbed by memories of visiting grandparents with dementia. I understand all of that.

But I’m glad I gave my son the choice. Even if it had been upsetting, we could have talked about it. I was a child who was sheltered from difficult things, and I still feel sad that I didn’t go to my grandparents’ funerals. I still find it hard to be vulnerable.

If this journey with dementia has taught me anything, it’s that it helps to face things head-on, to talk to trusted people, and not to be afraid of being sad in front of others.

I left the care home feeling full of sadness and pride all at once.

Have you taken your children to visit family with advanced dementia? Let me know what you think in the comments.