Caring for the ill can cost you your freedom
It was 1996 and I had travelled to Bordeaux in France, with my sons, for a family wedding. My husband, Richard West, chose not to come along. That was OK by me: we were not one of those couples who did everything together and family weddings were not his gig. Richard’s gig, preferably, was being in Vietnam, or the Balkans, or anywhere, really: he’d been a foreign correspondent and wandering reporter all his life.
This was just before the era of the ubiquitous mobile phone, so I am not quite sure how the message reached me: but family networks were alerted and I received the instruction to ring London because Richard, then aged 66, was in hospital after a stroke. He was not in any danger but I needed to return to England as soon as possible. I remember thinking, “Our life is going to change: but I am not going to let this take over my life.”
At first, everything was very reassuring. The stroke was mild, affecting his left arm just slightly and giving him something of a limp in the left leg. But he was in good form and I felt assured that with physiotherapy and medication all would be well. There was certainly no loss of mental powers.
Life is a river which changes as it flows: nothing stays the same. Gradually, in small measures, but unmistakably, Richard’s mobility deteriorated. He began to lean on me more, physically as well as metaphorically. I had to help him, more, with everything: he became nervous of stepping into the shower, which he regarded as a “lethal” location. He used a stick to walk, and valiantly kept on walking as much as he could for as long as he could. But the deterioration was inescapable. By 2003 it was clear he could no longer be left alone.
Old age is loss. Little by little, you let go of what once you had. A stroke creeps over the body in a physical illustration of that process.
Richard’s own attitude was admirably stoical. Those old English values of “mustn’t grumble” and “grin and bear it” run deep. Yet as he grew more disabled he had bouts – understandably – of grumpiness and anger.
I, meanwhile, had bouts of searing depression, in which I saw my home as a form of imprisonment. As friends and contemporaries began to die, and as I faced my own 60th birthday in 2004, I wondered if this was how I was going to spend what remained of my life – ever more and more taken up with my husband’s care. Would my whole life come to be defined by my caring duties? Would I ever again see Paris? Only if I could make arrangements for Richard’s care. Even getting to London – by the late Nineties we had moved to Deal, Kent – became a matter of planning. We embarked on a Baltic cruise in 2008, but his movement was by then so restricted that he found much of it agony.
And then there were the falls, which had started around the autumn of 2003. As his legs grew weaker, he would lose his balance and fall. At the beginning, he would manage to get to his feet again and I was able to help. But I’d dread the … thud! of his falling. He showed patience and fortitude while lying helplessly on the ground, but sometimes I’d have to call the paramedics to get him up.
And so I became ever more responsible for his care, and, of course, for everything else. A carer’s role involves the following list: organising meals and household chores; personal care; laundry; shopping; household and car maintenance; pharmaceutical and medical care; scratching – invalids can suffer from tormenting itching; chiropody arrangements; hair washing and barber visits; administrative paperwork; manicure; technical repairs; finances; pensions and tax; transportation arrangements; dealing with local authority and occupational therapists; companionship. It’s like being a single parent: you’re responsible for everything. Actually, it wasn’t the various chores or the “personal care” that I minded: it was the loss of liberty. It was the fact that my life has had to revolve around my duties to someone else. This was not how I had planned to spend my “golden years” of my fifties and sixties, so often heralded in travel brochures as a second season of freedom.
In some ways, my circumstances became almost a reprise of life when my children were very young. In the Seventies and Eighties, my generation of mothers juggled our roles (as women still do) between work and family commitment – always rushing from pillar to post, it seemed, always catching a deadline between one babysitter and the next. In retrospect, it all seems to have rushed by so quickly – why didn’t we appreciate time with small children more? And now comes the strange sense of repeat – continuing to work, in these years, fitting commitments and deadlines into the interstices of a carer’s responsibilities.
Yet I have encountered so many women (and some men) who have given up everything to dedicate themselves to a disabled or ailing partner. I have seen a woman give up a brilliant job to dedicate herself entirely to a partner with a stroke; I have seen a successful writer accept that her care for her husband means she won’t be able to take the time to write – and accept it willingly.
I am astonished that so many women are so altruistic in a way that I am not, by nature: I have done the best I can, and I think I have managed to keep from Richard any feelings of resentment. Catholic guilt has kept me focused: it reminds me that I signed up for this when I signed that contract to commit “in sickness and in health”.
The continuous falls eventually led to a sojourn in a care home, and when I developed a chest condition called bronchiectasis it was decided that I wasn’t well enough to look after him. The home was well-run but he became miserable there, and he would say, “get me out of here”. He also began to suggest some form of euthanasia, sometimes phrased in a joking way. He’d request “a bottle of whisky and a loaded revolver”, “a chalice of hemlock”, or “a humane killer”. We had spoken about issues around euthanasia and he did not agree with legalising it. We both agreed that “letting Nature take its course” is for the best – don’t kill people but don’t put up heroic measures to rescue those whose lives are drawing to a close.
Circumstances changed again and it was possible to bring Richard back home, by moving to a more suitable house. After that, he stopped asking for chalices of hemlock.
He has become totally disabled now, with no mobility. It took him a long time to accept that he couldn’t walk, and occasionally he still asks for “a hand” to get up out of the invalid chair. Though compos mentis, he is more detached and is no longer able to read. He was once angry about his condition but that, too, has passed. I can’t say that life is much fun for him. Yet I have learnt the meaning of “less is more”, and when a rerun of Frasier, or a particularly corny moment in a Carry On film makes him smile, it somehow means a lot.
In the past couple of months, we have had more help from Kent Social Services, and that has made a big difference. We also have a wonderfully kind home help, Ann, who tries to bring little treats into his day. I have encountered many kind people on this particular journey, and sometimes kindness comes from the most unexpected quarters. I have also learnt that words like “autonomy” become meaningless with age and infirmity. It maddens me when I hear some complacent person on the radio claim that everyone has the right to “control their own lives”. Try being a carer, ducky! Try being disabled! There isn’t much personal control left.
And the feeling of all life’s chances ebbing away becomes a melancholy presence. A dear friend of mine in Dublin, Mavis Arnold, cared devotedly for her elderly mother, who lived to a great age. Mavis did it willingly, but she did ask – “Will there be any time left over for me?” There wasn’t much: soon after the old lady died, Mavis developed Alzheimer’s – and is now cared for by her husband Bruce.
I suppose this is what a Christian community such as I was taught to believe in does: “love ye one another”. But it is difficult to reconcile that role of altruistic self-sacrifice with the aspirations to personal fulfilment, self-affirmation and autonomous choice that characterise the other value system we have embraced.
