I invited my friend Will Hames to write about his experience as a full-time carer for his wife who has M.E. Here's what he wrote :
You start looking after somebody because you care. It’s a feeling, an emotion, and in the beginning all the work you do is driven by love. For me, several years down the line, the word “caring” has taken on a different complexion all together. It’s not something I feel any more, rather it’s something I force myself to do because ceasing to do it is unthinkable.
There are still many moments of tenderness, but they are heavily outnumbered by flashes of irritation from both of us and long periods of mind-numbing tedium. Minor inconveniences which I would formerly have taken in my stride and rated unworthy of even a mention assume ridiculous proportions now.
She used to be an actress, full of bounce and bright ideas, before M.E. started to creep up on her. I used to have a well-paid job that involved frequent foreign travel and a lot of intellectual challenge. We both worked hard, expecting to keep our careers on a steady upward path, not knowing that we had already peaked and the only way was down. When I started to fall asleep at my desk, my mind blank with fatigue from nights spent helping her keep afloat physically and emotionally, the end was inevitable.
As my wife’s world has shrunk to the space within four walls, so has mine, and but for the fact that I have the very occasional opportunity to go out for a few hours as a comedy poet, my entire contact with the outside world (apart from a little banter with local shop staff) would be via Facebook and our doctor’s surgery.
There is a haphazard, arbitrary quality to our existence these days, with the need for regular medication as the only really consistent element in any of it. Outsiders see the state of our lives and wonder why I, as the stronger partner, don’t insist on imposing some proper structure on our days. It sounds weak and flabby to say that my patient calls all the shots according to how she is feeling from moment to moment, but that’s the fact. Sleep patterns? What are they?
As carer, it is down to me to make all the concessions and compromises: to fight with an invalid would make me a tyrant and a bully, so I allow myself to be tyrannised and bullied because I am - supposedly - big enough to take it.
But that’s just my own situation. Talking to other carers has shown me that there is a whole spectrum of power/dependency balances out there. Some people whom I might be tempted to envy because their patients are docile and biddable, envy me for having a patient who knows her own mind and can articulate her needs.
All the same, there are some common elements. For a start, neither invalid nor carer will have volunteered or had training for their respective positions. Both parties would rather be doing something else.
And neither one can look hopefully towards the future, particularly in respect of the question, “Which one of us will go first?” A carer without anybody to care for is in a better position than a suddenly-lone invalid, but at least the invalid has some claim to consideration from the rest of the world. The ex-carer has no status at all, and if he has spent decades going quietly stir-crazy in a role that is no longer relevant, his chances of fitting back into the world productively are pretty slim. Nevertheless, I hope I’ll be the one who survives, for her sake and for the sake of our children.
Every once in a while, somebody will remind me that I’m doing a valuable job, on duty 24/7 and saving the welfare system oodles of money (at least, while we still have a welfare system to speak of), but these reminders do not come nearly as often as the slurs and persecutions aimed at the disabled and people like me, who make a “life choice” to stay at home, ostensibly unemployed.
My wife draws benefits because she is unable to work for a living. I also survive on those benefits because, although I am perfectly capable of holding down a job, I can’t go looking for one. If a Daily Mail reader came to our house, he would probably label us both as benefit scroungers the moment he walked through the door.
We have a big, flat-screen TV. That says it all.
Will Hames has been a carer for more than twenty years. He keeps his spirits up by writing silly poetry. Every once in a while, he says something wise, but he insists on being careful not to make a habit of it.