My Loved One has now been in palliative care for what feels like a very long time indeed. I’m writing this as the twelfth day dawns. And he’s been in hospital for nearly seven weeks. I’ve almost forgotten what normal life feels like and everyday marriage, when we talked to each other and shared things, seems about two centuries ago.
I go to Lewisham hospital every day, often twice. Sometimes I’m joined by other, ever supportive, close family members but usually it’s just me. It is now four days since MLO woke in my presence or showed any sign of consciousness. He just slumbers on. He hasn’t eaten anything for days and takes only tiny drops of water, usually from a little sponge. He is now thinner than I could ever have imagined anyone being. He looks like one of those profoundly shocking concentration camp photographs – literally skin stretched over bone. I suppose he’s starving to death and yet he breathes on.
The agony, however, is mine (ours) and not his. He is comfortable and warm in his bed and not in any pain. Hospital staff are making sure of that. I sit by the bedside with a book or a cup of tea (I think a constant state of feeling “tea-logged” goes with the territory) holding and stroking his bony wrist and sinewy hand under the bedclothes. It feels right and is, oddly, comforting for me. He is, I’m almost certain, not even aware I’m there or who I am.
You’re an absolute bastard, Ms Alzheimer’s. You have you robbed him (and me) – at such a speed that even doctors are surprised – of everything he enjoyed and was looking forward to in his early seventies. But even that wasn’t enough for you. Now that he’s dying and there’s nothing anyone can do about it, you’re gleefully prolonging it for as long as you possibly can, sod you.
On the other hand maybe it’s our own wholesome lifestyle coming back to hit us on the nose. One of the nurses, whom I feel I know quite well, returned to work on Thursday after seven days off duty. “Well I didn’t expect to see you still here!” she said with her usual warm twinkle. “We didn’t expect to be here” I replied, to which she said cheerfully. “It must be all those healthy veggie casseroles you’ve fed him for the last forty years”. It almost makes me wish I’d given him a lifelong diet of chips and deep-fried stuff. Perhaps then his heart would have given up by now.
People often ask how I’m doing in this horror story. Well, most of the time I manage to hold it together and have normal conversations with people but I’m extremely brittle if someone says the wrong thing. I also find it difficult to deal with ordinary tiresome trivia such as some jobsworth being officious, or Brexit or remembering what I’ve promised to do. And reminders can reduce me to a shuddering wreck: Wagner’s Prelude and Leibestod on radio 3 last week, for instance. It was one of MLO’s favourites and it is, of course, an utterly gut-wrenching farewell so it’s apt.
It is also very tiring and stressful to be constantly on the alert, waiting 24 hours a day for That Phone Call. Inevitably I’m sleeping badly.
And so it goes on. And on.
Image: South Africa 2009