Only sleep

I went to see my dad for the first time since he became bedbound. It wasn’t what I was expecting. His bed was very low to the floor, crash mats laid beside it.

He was asleep when I arrived – so deeply asleep that for a moment I thought he was dead. His mouth was closed and he looked pale and otherworldly.

I didn’t want to wake him, so instead I studied him hard, trying to discern the slightest rise and fall of his chest as he breathed. The movement was so faint it was almost nothing, just a flicker.

Once I realised he wasn’t dead, he looked sweet really. Peaceful. Somewhere else entirely. I couldn’t wake him, so I just put the birthday card I’d brought on his chest of drawers. Seventy-seven – far too young to be bedbound.

I wanted to see him awake and talk to him and hold him, but I couldn’t bear to disturb this rest his body seems to need more and more.

I remember doing the same with my children when they were babies: standing over their cots, terrified of walking in and finding them dead. Beds, sleep, death – how close they sit together in our minds. How vulnerable people look when they’re asleep. How quickly sleep can resemble absence.

“To sleep, perchance to dream.”

I’ve heard that in the later stages of dementia people often sleep more and more as the body begins to shut down. Are we there already? Every week I don’t manage to visit him I worry I’ll never see him again.

The weight of it. His sleep. My sadness.

I sat in the armchair beside him and cried quietly, scared he would wake and find me crying and that it would upset him. But I couldn’t stop myself.

Whenever I see him, I realise how much I’ve compartmentalised my emotions. I hardly think about him when I’m not there because it’s too painful to carry around in everyday life. Sometimes I feel alarmed by how good I am at sealing things off like this. But today I understood it differently. Maybe it’s the only way I can survive it.

There must be so many families living like this. So many carers quietly partitioning off one part of their minds because the grief is too raw to sit alongside jobs and school runs and small talk at the school gates.

“How’s your dad doing?”

I’ve been watching him slowly die for years.

But actually, he looked ok. Thin, yes, but not frighteningly so. He’s still eating well, I’m told. He’s getting the rest he seems to need.

And when he finally woke and saw me, he smiled – my face red and blotchy, but thankfully no longer crying.

I stretched out beside him and showed him the card and stroked his arm. Part of me wanted to lie my head on his pillow beside him and sleep too, to join him in that strange, soft oblivion.

He seemed content while I chatted. Then, after less than five minutes awake, he closed his eyes again and drifted back to sleep.

So I left.

But I think it mattered too, sitting there in his room and crying and allowing myself to feel what I was feeling.

I come from a generation raised to believe feelings were something to get over quickly. Push through. Don’t make a fuss. Keep working. Smile, it might never happen. Cheer up, love. Don’t cry.

But sometimes we do need to sit and cry. Then get up again and go back to our children and care for them, and care for ourselves too.