Every now and again I’m asked what it’s like to be a carer, as though it’s some kind of exotic career choice I’ve made. My usual response is a few muttered words about it not being easy, then changing the subject. Because it’s not something I like to consider or dwell on too much, let alone discuss with someone who’s just trying to make idle conversation.
For me, being a carer is bitterly lonely. DH and I always supported each other and I could talk to him about anything and everything. He’s my best friend and he was my rock, the one person who understood me completely and could soothe, reassure or encourage me with just a few words. That’s gone now. I can’t confide in him about my aching loneliness, my despair, my grief and rage at what our lives have become; it would feel akin to blaming him and it’s not his fault. But I can’t admit such feelings to anyone else either.
What would be the point in such disloyalty? Nothing would change.
Instead I trudge on; I get up each day and perform the tasks required of me. I care for DH just as I care for our children: I ensure he’s clean, washed, fed and clothed. I make sure that he knows he’s loved and valued. I involve him in as much as he’s able to cope with that day. Sometimes that means he comes on outings with me and the children; some days he’s barely able to be physically present, instead preferring solitude and sleep. I do all the other necessary tasks like taking the children to school and their clubs, playing with them, doing the housework, doing my voluntary work.
I wear my smiling mask, only letting it slip when I’m alone.
I take DH to his appointments – the GP, the psychiatrist, the DWP. I hold his hand and reassure him as he stammers through an account of how he’s been lately. I speak for him when he’s unable to carry on; I try to remain dispassionate as I detail his psychosis, his suicidal thoughts and urges, his unintentional withdrawal from those who love him. I rub his back when he becomes so anxious that he feels he’ll vomit, and I hold him close and murmur reassuring words when he begins to panic. I love him and I protect him, and later I hold him as he sobs in shame and despair at how much his illness has changed him.
I lie awake at night, mourning the loss of my husband even as he sleeps beside me.
I worry about the future. I worry that one day he’ll give in to the urge to kill himself. I worry that I won’t always be able to keep on keeping on. I worry about whether the children are affected by their dad’s illness. I worry that they might inherit it. I worry that something might happen to me, that I could be snatched from my little family, leaving them lost and adrift.
I throw stones at the sea, and as I do I scream and I sob and I rage until I’m exhausted by it, and the desolate calls of the gulls sound like an echo of my despair.