An honest dialogue about the reality of caring

Author Sarah Tarlow talks about the need for an open and honest dialogue about the reality of caring.

 

Caring is hard work and we need to be honest about that, says Sarah Tarlow, so that carers can get the help they need from others.

Sarah cared for her husband Mark until he took his own life after years of living with a mystery degenerative condition. She recounts that experience in her recent book, The Archaeology of Loss: Life, love and the art of dying, writing about the ‘silences’ around the act of caring, the fact that it is stressful and super demanding and that ‘advice’ to look after yourself and have some me time ignores the everyday reality of caring.

She says: “Carers are overwhelmed and burned out, not through some martyrish determination to soldier on unassisted…People find themselves, as I did, becoming round-the-clock, round-the-calendar carers because they do not have any alternative. Being told to treat yourself gently is like being told to cheer up or not to worry. Our lives, and this is what makes it so bloody hard, are no longer in our control. Do you not think, I want to ask, that I would breathe the oxygen if it were there? Do you not know that I would suck it like a desperate, guzzling hog?”

Her book has brought an overwhelmingly positive response, particularly from others who have been or are carers, because of its honesty and the way it opens up conversations about the reality of caring that the rest of the world sometimes doesn’t want to acknowledge. Sarah describes a whole complex whirlwind of emotions from anger, guilt and resentment to love and empathy as she tries to keep her family and her job going and to understand all the emotions that her husband is undergoing, which often make him prickly and difficult company and further isolate Sarah.

Sarah is a professor of Historical Archaeology, with an interest in the role of emotions in history, and she loves to read. She turned to books to help her cope with and reflect on her situation, but found few that discussed the sense of anger, self pity and exhaustion she felt. She says: “There is a taboo about talking about caring in terms other than highly romantic and sacrificial narratives.”

Her book is based on journal writings and other pieces she had written with one of the aims being to open an honest dialogue about caring. She is very clear that the book is not a grief memoir. It is more about the process of Mark dying than the period after his death.

Working carers

For Sarah the usual carer narrative acts as a barrier to others understanding what they can do to help, although she stresses that colleagues at work, family and friends have been very supportive. She speaks about a friend who came round to weed her garden with her. “That was the best response – keeping me company and doing something practical to help,” she says. But there was a lot of advice to take care of herself, which was unhelpful. “Did they think I was some sort of martyr? I would love to have taken long walks and had a bubble bath, but there was stuff that needed doing that no-one else could do. Who would cook the kids’ tea if I was wandering around through the wild flowers?” she says, adding that people tended to assume that all she was thinking of was Mark, which made talking about anything else – whether that was losing her career, having no time for friends or being exhausted – sound selfish.

Her book is also a powerful discussion of assisted dying. Mark was unable to even discuss his death with Sarah for fear of incriminating her. Instead the two communicated in an elliptical way, talking of generalities about death rather than specifics. Mark therefore died alone and this has had a profound and lasting impact on Sarah – who feels that she could not help him have a good death and that he took that enormous decision on his own, wresting some control from an impossible situation where he was becoming more and more incapable and where he couldn’t access hospice care due to the lack of a clear diagnosis.

She states: “I hope the book will enable people to have more honest conversations about caring and dying and to feel ok to express the full range of what they feel and acknowledge that everyone’s experience is different.”

*The Archaeology of Loss: Life, love and the art of dying by Sarah Tarlow is published by Picador.



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