Bedbound

I went to visit my dad with my son, and it was a hard visit. Not for my son, who continues to take it in his stride (as I’ve written about before), but for me.

When we arrived, my dad was sitting in a chair in the corner of the lounge. He can’t walk anymore, but previously I’d found him quite content there – watching TV or simply staring into space. This time, though, he looked slumped. His demeanour was different too; he seemed very disengaged.

While he can’t really have a conversation anymore – he struggles to find words and often doesn’t understand ours – he usually nods or smiles as I chat and show him photos. But this time there was very little response. He seemed distant, distracted, looking away rather than towards us.

It’s always hard to see him in these more advanced stages, to step into the care home and interrupt a day that doesn’t always seem to have space for us anymore. But this visit felt particularly difficult.

We had brought some small chocolate eggs, as it was just before Easter. It was hard to watch him eat one with such difficulty, and I worried he might choke, even though he’s still managing food well. My son suggested giving him more, but I told him I was worried about his Opa and that we should give the rest to the nurses, who deserve far more than chocolate for the care they give.

A few days later, my mum told me they had decided he should now stay in bed. He had been finding it difficult to sit upright – as I’d noticed – sliding down in chairs and in his wheelchair, sometimes lurching forward and nearly falling. He would also push back with his feet, which could tip the wheelchair backwards. They were worried he might seriously hurt himself. They’re going to consult the physiotherapist and doctor, but for now, bed feels safer.

At first, I worried the decision might be more for the staff’s convenience than for my dad. But apparently he’s content. He seems happy lying there. Maybe that was why he seemed so unhappy when I went to see him.

We’ve put a TV in his room so he can still watch his programmes and added photos and decorations to make the space feel warmer. His room had been quite bare before – he would pick things up, move them, and lose them – but now he can’t.

Bedbound, bedridden, no longer able to wander, no longer wanting to either it seems. But we can’t know.

I worried about bedsores, but that’s something they’ve already been managing, as he had been sitting for such long periods anyway.

So this is another phase, I suppose, as we move slowly towards the end.

Just as you begin to adjust to one stage, the next arrives. And still, the road stretches ahead, with no clear sense of how long it will be.

This is probably quite a heavy blog post, but I want to share our journey so that others might recognise something of what lies ahead – even though every path through dementia is different. I’ve always wanted to be honest about it. It still feels like something we don’t talk about enough.

I saw a friend shortly after visiting my dad. He asked how my dad was, and I found myself unable to offer anything but the truth – that I felt sad about it all. I apologised, but he said something that stayed with me: you don’t need to give us a silver lining when we ask. We just want to know how you are, whatever the answer.

I still find it hard not to try to lift things, to keep the mood positive. But dementia is teaching me that sometimes you have to let yourself sit with the sadness.