I don’t have a lot of spare time to fart around online and aside from Twitter, where I’ve met some truly wonderful people I would never have known otherwise, don’t really feel comfortable baring my soul and holiday photos to the world at large.
But someone suggested that I check out an online forum for carers and I thought that might be useful as another way of just sharing some of the daily fears and frustrations that only other people in the same situation would understand.
I posted a short hello explaining a bit about my situation and what was happening with Nick; I said a little bit about his drinking and mentioned the constant, over-arching, undealable-with guilt that most of the time he was more or less housebound on his own and how whatever I did I seemed to be powerless to make life better for him. It wasn’t asking for advice or solutions – just, as with this blog and the odd wail on Twitter, saying how it is. Because for Nick’s sake (and for anyone being cared for by someone who reads this) I do think somebody has got to.
To my astonishment, one of the responses advised that I had done quite enough and it was clearly time to give someone else the responsibility and get him into a care home.
It’s not the first time someone has said that, and at least this time it was a stranger; previously, one of my friends (who had dealt heroically with her demented, alcoholic, dying father living at home and wouldn’t hear of him being anywhere else) had said the same. But coming from a total stranger who doesn’t know anything about us, it felt really harsh.
And it’s not time yet. Even if rooms in decent care homes were falling out of the sky, and even if we sold everything we had and the clothes off our backs to afford a week in one of them, Nick is still young. He’s still too young to qualify for most private sheltered housing associations, and still relatively independent.
Actually, I hesitate to type that last sentence. He’s not at all independent, and that's the trouble.
But it’s not time. The health professionals we have met so far have all said that there is really nothing suitable in our area for a man of his age and stage of illness, not until end of life care becomes appropriate. And we are not at all ready to think about that.
What do other people do? I ask. They struggle on. With the help of families, friends, carers, they live at home and struggle on. We all do our best, and none of it is ideal.
When I allow myself a clear-eyed moment (difficult amidst the constant hurly burly of the average day) I wonder if a care home would be all that different anyway.
Nick would still be sitting in his chair, washed, dressed and medicated by carers, having meals brought to him and washed up afterwards, having a sleep in the afternoon, me coming in for visits and outings but essentially living on his own in a multi occupancy unit – it’s not a million miles away from the way it is now. But it would be a quantum difference in what it represents – no getting better, no going back. We know this already but we are not ready to spell it out and it’s not time yet.
Will I reply to the harsh stranger on the forum? Say what I would really like to say which is to tell her where to go. Get banned by moderators for trolling in the course of my very first conversation on that particular platform? No, probably not. But the thought of it is strangely cheering.