Ruth Leon - But What Comes After?

I lack the Mother Teresa gene. Most of us do. When you find yourself the principal carer of a chronically or acutely ill person you imagine that youre miraculously going to develop the gene that allowed the famous nun to be gentle and loving, warm and affectionate with the scraps of humanity she scraped off Calcuttas pavements. You tell yourself, if she can touch these filthy strangers, surely you can manage to be supportive to someone you love.

It doesnt always work that way. Sure, there are those among us who are born with patience, superhuman endurance, a loving heart and an endless sense of humour I have a sister like that. She always knows the right thing to say, how to make someone feel better and what to do to get the best out of whoever shes with. I love her beyond reason and, sometimes, I hate her. She was born with the Mother Teresa gene.

I was not. Im not a monster but an ordinary woman who, when called upon to take care of a chronically sick husband, found herself neither up to the job nor able to see a way out of it.

I learned a lot in the twenty years he was chronically ill and in the four years following his stroke when his illness became acute. I learned not to beat myself up for not being good enough. I wasnt a very good carer but I was what he had, and that was, just about, enough. I did my best to make him happy and comfortable, knowing he was still sick and miserable and that, probably, someone else out there would have a better shot at it. My best wasnt, I always suspected, up to much.

But I wish someone had written a book that would have told me that I was all right, that what I felt was common to many others in the same boat, that what I was doing wrong was understandable and what I was doing right was commendable. Instead, your friends, secretly grateful that it isnt them, praise you for your fortitude without having any idea what you are experiencing and suffering.

When you find yourself in charge of two lives, there are many things that nobody tells you. One is that its all right to be angry. Youre entitled. Just dont let it paralyse you. Another is how boring it is. Depending on the illness suffered by your loved one, he or she is always going to be the one who gets looked after while youre always going to be the one doing the worrying. And the one who has to clear up the mess. Worse, when your friends are out having fun or at least having a pint, youre going to be changing dressings or pills or sitting by yourself while your charge sleeps or complains. A bit of organization will allow you an hour or two to read a book, go ice-skating, go to a concert or go to the pub. Learn how to find that hour.

One of the bits of advice I pass on to anyone with a chronic sufferer in their lives is: dont take this illness on yourself; it is theirs, not yours, so dont beat yourself up about it.

Another is to learn how to use other people. I remain constantly conscious of how incredibly lucky I am to have my friends and family. Had I been alone, I hope Id have sought out fellow-sufferers online, in chat rooms, via the social services, in support groups or wherever they could be found. Over time, I learned to lean on others, as they once leaned on me, to ask for help and not to care about my carefully nurtured image as someone who is self-sufficient and available to care for others but who doesnt need that attention herself. I learned to talk straight about Sheridans illness and my reactions to it. I tell my friends and sometimes others about what I did badly, about my inability to cope with the effects of the illness and about the occasions when I was ashamed of myself for shouting at him or not understanding that he couldnt help being infuriating because he was ill.

Ive learned to forgive myself, at least a little, for being such a bitch, for snapping at him and manipulating and ignoring him. I did the best I could. It still seems to me that it wasnt good enough, he deserved better, but I was there when nobody else was. At such moments, while I was trying to forgive myself for making him even more unhappy than he already was, I was also trying to get rid of my anger. I know anger is a destructive emotion for me. Others can be fuelled and energized by anger; I am undone by it. It makes me weak and vindictive, two areas of my personality I cant afford to enter.

Its all right to resent the significant other in your life. Its not their fault that theyre sick but they wont be doing much to make your life easier while your entire existence sometimes seems devoted to improving theirs. Bitching at them about the small things sometimes helps you live through the harder stuff. Creative complaining makes you feel much better.

Illness is messy, dirty, unpleasant and, a lot of the time, it stinks. Literally. It is undignified, inelegant and militates against any kind of civilized life. Is this, you ask yourself, why I married (gave birth to, was born to, became friends with) him or her? Why did Mother Teresa do it?