What’s it like to be a caregiver, day to day and moment to moment? Each caregiver’s experience may be different in its details, yet there are a lot of commonalities. People without firsthand experience probably have no idea that it is the “dailyness” of providing care that wears caregivers down—the debilitating combination of isolation, frustration and exhaustion. Yet the caregiver’s perspective and unique challenges usually pique little interest. I’ve read a lot of books about the caregiver’s responsibilities and the care recipient’s needs, but I haven’t seen much of anything about what goes on in a caregiver’s mind and how to cope with it.
As a partial remedy for this unaccountable omission from the literature of caregiving, Britisher Hugh Marriott has written The Selfish Pig’s Guide to Caring. Marriott is a witty and engaging author, even as he explores some of the darkest corners of the caregiver’s heart and mind.
The book, he says, is for those “of us who have come reluctantly to caring. We feel bad about our unwillingness, and secretly think of ourselves as selfish pigs. Like pigs in nature, we can be of either sex. Also like real pigs, we are not necessarily, or at least always, disagreeable and unpleasant. But we’re certainly obstinate.” He often refers to the caregiver (the “selfish pig” of the title) by its initials SP.
As for the problem of what to call the person who receives the care, Marriott rejects “patient,” “cared-for person,” “loved one,” “disabled person” and just plain “person” before proposing an acronym derived from the phrase “Person I Give Love and Endless Therapy to.”
Piglet!
Light-hearted acronyms aside, being a caregiver (“carer” in the U.K.) “may well be,” he says, “harder than anything you have ever done before. There is a long list of reasons why this should be so. But the most compelling are our secret thoughts. And these are universal.”
Marriott’s unblinking examination of these “secret thoughts” makes up the body of the book. There is the SP’s frustration with friends, family, medical services providers, and government personnel, not to mention the piglet. There is the isolation, exhaustion, anxiety and sense of hopelessness that result from long stretches of providing care without respite. There is anger, resentment, fear and guilt. Marriott writes about all of these moods and emotions in the context of incontinence, sex, dementia, personal care, money and even the SP’s occasional thoughts of murder.
He understands that the caregiver’s essential invisibility compounds all other difficulties. “When someone pushes a wheelchair through a crowd,” he observes, “it’s the wheelchair that attracts the sideways glances…Those people in the crowd don’t spare the carer a thought. Be fair, did you ever, before you became a carer?”
Some of this is hard stuff, but caregivers have to prepare for it. If you are a caregiver or are soon to become one, I think you’ll find Marriott’s book useful, insightful, supportive and sobering, yet at the same time amusing. I highly recommend it.
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Tags: care recipient, caregiver, Hugh Marriott, The Selfish Pig's Guide to Caring