Learning to talk about loss

It was the first time my daughter cried about her grandad’s dementia. Not because something new had happened, but because she finally understood what had been happening all along.

I’d been waiting for that moment.

I could feel the penny hadn’t quite dropped with either of my children about what was happening. I would tell them that it made me feel sad to see my dad like this when I went to visit him in the care home; how hard it is that he doesn’t really recognise us, that he can’t walk any more, or even leave his bed now. But because they only really remember him like this, they don’t seem to find it as hard. In their memory, he has always had dementia.

After I went to see my dad last time and came home quite upset, I think my daughter started to think about it more. She’s 9 now, and she’s beginning to really understand more about life and emotions. I spoke to her as openly as I could, telling her how it had gone and how it made me sad, and that it was okay if she felt sad too. But she said she was fine.

Then just before she went to bed, she came into my bedroom crying and at first wouldn’t tell me what it was about. I think she worried about upsetting me more. But when she finally told me, it was almost a relief – that she had shared it with me, that I could comfort her, that something else hadn’t been happening that I didn’t know about.

We talked about how sad it was, and she told me she worried that her dad would get it too. Of course. I worry about him getting it, about me getting it, about anyone I know getting it.

I told her that her dad was looking after his health and that would reduce his risk, but that her grandfather hadn’t done anything wrong – he was just unlucky.

It was so tempting to say, no, your dad will never get it, he’ll never die. I had to resist the urge to take away all her pain, which is always what you want to do as a parent.

I told her I was sorry she didn’t really have a grandfather she could enjoy, that he would have loved her so much if he had still been himself. She doesn’t have any grandparents on the other side of the family – she only really has my mum, her granny.

She said she didn’t like going to visit him but felt like she should. Again, I was very familiar with that feeling. I told her she should only go if she wants to, and that I totally understand if it’s too much for her. I told her I don’t like going either.

A few days later she said she did want to come with me next time I visit, which I had planned to do just with my son – who is younger, and has less understanding, less worry. So the three of us are going to go together.

Children can handle a lot of reality, even a lot of sadness, as long as it isn’t swept under the rug or made scarier by silence. That’s why I try to be open, even though I want to hide my feelings, not let them see me cry. That was how I was brought up to be.

But I remember how disturbing it felt to try to guess what was going on with the adults, to not go to my own grandparents’ funerals in case they were too upsetting. It was so much more upsetting not to get to say goodbye, not to grieve together.

And it’s interesting to me that the worries of a 9-year-old are the same worries as a 41-year-old. I don’t like visiting. I’m scared it will happen to other people I love.

Afterwards I also thought about how much dementia has overshadowed my children’s childhoods. They were around 2 and 4 when we first got the diagnosis, and by then we were already pretty far down the line. I’ve been grieving for my dad for years now – prime years for them, when they’re growing and becoming themselves.

Sometimes I’ve found it hard to respond to their needs because I’ve been struggling with this. Sometimes I’ve snapped at them or disappeared off to my room to rest and cry. What effect will this have on them when they’re older?

All I can hope is that I’ve shown them that we can deal with hard things and still live our lives. That resilience isn’t about not having emotions, but about having them and carrying on anyway. That sadness and happiness can exist side by side. Because these have also been some of the happiest years of my life, with my little family, building our life and growing together.