Caring about carers

One of the most challenging roles that any of us can find ourselves in is that of carer.  I am not thinking about professional carers now. They also do a fine job but can go home at the end of a shift. Nor, in this instance, do I mean parents of ordinarily robust children who will in time grow up, leave home and make lives of their own.

What I am thinking about are people who through illness, accident or fate find themselves in a situation in which their life is almost entirely focused on the needs of another person.

Sometimes this is a permanent situation. And that requires massive inner adjustments for carers as well as the more obvious changes in their outer circumstances. Sometimes the situation is more temporary. Yet often that experience is also extraordinarily demanding, not least because of fears that it may end in death.

Either way, few of us can accurately predict how a serious illness or disability will play out. Nor can we generally foretell what kind of patient we will be – or what kind of carer. I have witnessed so much unnecessary suffering when a patient gives themselves a hard time for not feeling like a saint or a hero in the wake of a serious accident or diagnosis. In fact, some studies show that patients who speak up about their pain or fears or complain loudly will do better psychologically than those who are more compliant and accepting.

There are many ways to complain, however, and only some are helpful. Complaining to (and vigorously questioning) your medical team is one thing.  It’s something else again when a patient trivialises, criticises or overlooks what their carers are doing because it doesn’t fit their idealised fantasies of perfect care.

The entwined roles of patient and carer are intimate and complex. When they are played out over months or years rather than weeks they may arouse deep and often unexpected emotions. Those emotions can be unwelcome but if everyone is to go forward without feeling exhausted or resentful they have to be acknowledged. Because emotional support matters so much, changed relationship dynamics deserve every bit as much attention as the illness itself.

People will often be highly focused and responsive in the drama of a new diagnosis. But as time goes on, and as chronic or unpredictable illness or disability becomes a new way of life, strong feelings of ambivalence are likely to emerge. Dependency and neediness arouse confronting emotions. So do worries about how adequate (or not) everyone is feeling.

Even the most loving relationships rarely have to accommodate the degree of commitment, selflessness and tenacity that serious illness or disability demand. Nor do they have to encompass the intense vulnerability of an adult depending on others for their most basic personal needs. In these situations, mutuality itself may need to be redefined.

If the person who is ill has more usually been the caretaker, this can feel like a dramatic loss of self. It can be equally devastating for someone used to being “in charge”. Re-valuing your attitudes and sense of self is one of the hidden challenges of serious illness. What’s easily overlooked is how those same core issues must also be redefined by carers.

Clearly, carers also need care. Their needs might be secondary but cannot be forgotten. They need consideration and lots of appreciation from others. They need opportunities to grieve their old life and freedoms without feeling guilty. They need chances to explore what being a “carer” means to them personally rather than generically. They need clarity about what would most effectively support them. And, just like the patient, they need space for the joys and resources that remain untouched by illness.”,