The Yes Woman: Being a carer can make you feel awful about yourself

Carers, like parents, seem to be afraid to express themselves fully. I’ve been out with friends whose toddlers have chosen that moment to have a meltdown. The frustration is evident on their faces as they attempt to scrape a small, flailing person from the pavement, but they’ll never fully admit how hard they find it. Fearing judgment, they will always mitigate their exasperation by saying how much they love the baby. Of course they do, but that doesn’t mean that they don’t struggle in their role.

It would be a comfort to all, I think, if sometimes people would admit that they have moments when they wish they could be somewhere else; moments when they question whether they’re cut out for what can sometimes be a painfully arduous job.

A couple of weeks ago, my life stopped. That is what happens when someone you love gets sick to the point where they cannot even get out of bed without help. Your life stops. They need to be cared for, and there is only you to do it. My mother hadn’t been well for some time, but she had just had surgery, and she needed full-time care for a while, so I went home to be with her.

She had been a carer to her own mother all her life, so I had witnessed enough to know how difficult a carer’s job is. My grandmother had not been easy, or kind, in her illness. As a carer, if you’re lucky, there are other family members to share the workload, who might take over for a weekend, or for an afternoon, so that you can go and buy groceries, or visit the dentist. Someone might take over so that you can conduct the business of your own life in small windows of time. If you’re unlucky, there’s no one but you, and you will find yourself standing in a kitchen, making an ill person’s breakfast, and floundering in the knowledge that, no, you won’t be leaving the house today. You might get as far as the back garden to hang out the washing, but that’s it.

Utter frustration

Caring for someone – even when you dearly love them – can make you feel terrible about yourself. You move between utter frustration at the fact that you can only witness the pain or deterioration of the person you are caring for, and resentment that you must do so. Sometimes, you become irate because every conversation is about that person all the time. They very understandably talk about themselves (when you are very ill, bowel movements and painkillers can be your the whole world), people call you to ask about them and give unsolicited advice. Doctors and nurses issue you instructions on how to care for them.

Never, at any point, does anyone think to check if you’re all right. For some reason, expressing upset at this is taboo. Other family members look at you with resentment when you say you are finding it hard, or that your charge can be difficult, even aggressive sometimes. Mostly, I think, their reaction is motivated by fear: if you can no longer act as carer, who will the task fall on?

This week, I sat in University Hospital Limerick's emergency department, next to my mother, who was left to sit for hours, despite the fact that I clutched in my fist a referral letter saying that she could not sit without extreme pain. She had had complications after surgery. On my left was an angry drunk, on my right an inmate of Limerick Prison, beaten, with limbs in casts and accompanied by two detectives and two uniformed gardaí. My mother cried from pain as I helped her out of her chair so that she could try to walk a little. As we shuffled slowly from the waiting room, I heard the prisoner demand that one of the gardaí get him a cup of tea, and check why he hadn't been seen by a doctor yet.

When we finally got home later that day, and my mother was comfortable in bed, I sat in the living room and wept. I cried for the fact that she hadn’t been treated with humanity at the hospital, for the pain she was in, and fear for the future. I also cried for myself – for the life I was missing and the loneliness I felt.

When I was finished, I started on her dinner.

• The Yes Woman says yes to . . . love and caring . . . and no to . . . loss of self