“Medically futile”. I’ve never heard two words that have cut through me more than those. No matter how warmly they are delivered, they are the coldest of words to use in connection with a human being. Particularly one you love. I’ve heard them twice recently, in the same meeting. Both instances regarding the use of artificial means of providing food or other nutrition to MW.
She will not be given a PEG tube – it would be “medically futile”, i.e., it won’t make any difference to the final outcome. Now she won’t be given a nasogastric tube for feeding, either. Bizarrely, she’s already had one which she took to rather well but, for some reason, it came out. They won’t put one back in. It, too, would be “medically futile”. She’s not taking food or fluid orally, she’s lost the ability to swallow. And it all frustrates the hell out of me.
I used to be a civil servant. We had an abbreviation that we applied to a case that cost more to work than its maximum forecasted result: NWFP – Not Worth Further Pursuit. It feels like this has been written on MW’s file. That she’s no longer worth the effort. Rationally, looking at it with cold logic, I get it. Emotionally, it can fuck off: she is infinitely more than an effort/benefit ratio.
People keep asking me how I am – the medics in that meeting, family, friends, neighbours. They already know how I am. Or can guess. How am I? I’m hurt. Angry. Frustrated. Sad. Empty. Numb. I am in mourning. For an event that hasn’t happened yet but is going to. Pre-grief grief. A few days ago, half undressed and ready for the shower, I had a meltdown. A full-on, hands and knees, snot and sobbing meltdown. “I just want her back”. Repeatedly.
Twelve years ago, just before MW was diagnosed, we were waiting for the results of her MRI scan. Her vision was compromised and she was struggling to walk. The options on the table regarding possible diagnosis were MS and a brain tumour. I remember vividly the words of a colleague – an MS sufferer. “If it’s MS, it’s not a death sentence.” I know she was trying to reassure me that her experiences with MS proved that the disease wasn’t so much of a curb on her life. That the alternative option was worse. I know that she couldn’t know what was going to happen. Maybe one day I can accept what she said at face value, but today is not that day. Today, I’m bitter and resentful. Today, to save MW, I could murder the world.
At times, I’ve wondered if me being frustrated while caring meant that I was cold. No. I was just stopping myself from feeling what I feel now. Utterly helpless and desperate for things to go back to how they were. Before, the frustration could be tamped down by doing something practical, to enable us to go on. Now I can’t do that. There is no going on. There is no practical thing I can do to make things easier. I can only watch, stupid and helpless, while this disease slowly and sadistically steals everything that’s left of MW. I just want her back.