Why we need to talk about the reality of caring

Sarah Tarlow speaks to workingmums.co.uk about her book on being a working carer and about the need for honest conversations about that role and about dying.

 

Sarah Tarlow wants to change the way we think about unpaid caring. She says the usual narrative of sacrifice and love doesn’t help carers and prevents them from getting the help they need from others.

Sarah’s husband Mark took his own life after years of living with a mystery degenerative condition. Sarah, a mum of three, was his carer throughout and recounts that experience in her recent book, The Archaeology of Loss: Life, love and the art of dying. She writes 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.

Taboos

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 in the lead-up to Mark’s death. “Maybe I am uniquely unpleasant, but I hope that is not the case,” she says. “There is a taboo about talking about caring in terms other than highly romantic and sacrificial narratives.” 

A friend encouraged her to write about it after Mark’s death, but she was too exhausted. Then in 2020 she felt the time was right. It was more than four years since Mark had died. Sarah pulled together journal writings and other pieces she had written. She had no plan, but as she started writing she thought that there was maybe a book in it. There were three main motivations: to campaign about the circumstances around Mark’s death, to open an honest dialogue about caring and to see if she could write literature rather than just academic articles.

Through a friend she got an agent. Sarah 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 mums vs 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.

She had a lot of friends who lived far away who could not offer practical support, however, and many of these kept telling her to look after herself. She found this difficult. “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 sound selfish. 

“It’s similar to the motherhood discourse,” she says, adding that talking about your career when you are a mother has been portrayed as self-centred. However, she thinks that narrative has shifted a bit and discussions about working mothers have since become more honest and open. The same has yet to happen for carers, however, she says, particularly working carers. She was worried about Mark, but also about losing her career, having no time for her friends and losing her social networks and there was nowhere that she felt she could express that. She adds that the longer caring goes on the harder it is.

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. 

Sarah says that writing the book has influenced her academic writing. She has become more experimental, even trying a more literary style which didn’t go down too well when it came to peer review. Maybe academia is not yet ready for a different style of writing.

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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