Sunday, March 10, 2013

Caregiving Difficulties & Evison's The Revised Fundamentals of Caregiving

 From last month's NYT editorial "The Reluctant Caregiver:"
Now and then, I refer to the people that caregivers tend to as “loved ones.” And whenever I do, a woman in Southern California tells me, I set her teeth on edge. She visits her mother-in-law, runs errands, helps with the paperwork — all tasks she has shouldered with a grim sense of duty. She doesn’t have much affection for this increasingly frail 90something or enjoy her company; her efforts bring no emotional reward... “It’s important to acknowledge that every relationship doesn’t come from ‘The Cosby Show,’” said Barbara Moscowitz when I called to ask her about reluctance. Ms. Moscowitz, a senior geriatric social worker at Massachusetts General Hospital, has heard many such tales from caregivers in her clinical practice and support groups... For a reluctant caregiver, “the satisfaction is, you haven’t turned your back,” Ms. Moscowitz said. “You can take pride in that.”
Okay: interesting moral quandary that I hadn't previously considered. And the debate only gets deeper in the comments section. Here's the most popular comment:
I strongly disagree with Ms. Moskowitz's claim that there's satisfaction in knowing you haven't turned your back, and you can take pride in that. I'm looking back with resentment and regret at the two years I've already spent in the caregiver role, and I can't imagine that I'll look back in 5 or 10 years or whenever it's over and feel anything but greater resentment and greater regret. I'm never getting these years back, after all, and by the time it's over it may be too late even to get a reasonable level of health back. I think it does caregivers a disservice to sugar-coat the reality, and claim that even for the reluctant caregiver, there's a benefit there at that end. I'd much prefer to hear the unvarnished truth - that many of us are simply unfortunate enough to be conscripted into a lengthy period of life-wasting, soul-sucking servitude for which there is no compensation and no benefit. I think if more people started telling the truth about this, it might make a dent in everyone's expectation that adult children (daughters and daughters-in-law, in particular) should and will just suck it up and do it.
Pretty heavy themes.  For a novel about difficult caregiving, try Jonathan Evison's The Revised Fundamentals of Caregiving:
Benjamin Benjamin has lost virtually everything: his wife, his family, his home, his livelihood. With few options, Ben enrolls in a night class called The Fundamentals of Caregiving, where he is instructed in the art of inserting catheters and avoiding liability, about professionalism, and on how to keep physical and emotional distance between client and provider. But when Ben is assigned to tyrannical nineteen-year-old Trevor, who is in the advanced stages of Duchenne muscular dystrophy, he soon discovers that the endless mnemonics and service plan checklists have done little to prepare him for the reality of caring for a fiercely stubborn, sexually frustrated adolescent with an ax to grind with the world at large. Though begun with mutual misgivings, the relationship between Trev and Ben evolves into a close camaraderie, and the traditional boundaries between patient and caregiver begin to blur as they embark on a road trip to visit Trevor's ailing father.
NB:  article focuses on difficult caregiving for parents, while the book focuses on (initially) difficult caregiving for a client who is not a relative.

UPDATE:  some well-written reviews of The Revised Fundamentals of Caregiving are available on The Book Reporter, the Fiction Writers' Review, and the Next Best Book Blog.

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