(image public domain: Pixabay)
Mr. George Rook, a British blogger with dementia, posted a well-informed personal opinion piece about using the word “suffering” in the context of his condition. It’s a fantastic read IMHO.
He objects to clinicians who say that Mr. X “suffers” from dementia, or other conditions, because suffering is state of being that is personal and may not be observable, and has a negative connotation. He emphasizes living well with his condition.
I wouldn’t argue with Mr. Rook, but as a clinician, it reminds me of how we in cancer alleviate “nausea.” Nausea is a personal perception and bit hard to define, especially for us in pediatrics trying to help a pre-verbal toddler with chemotherapy vomiting. In fact, nausea “scales” are unreliable and can change minute to minute. Clinical improvement research has to have something to measure, so I always enjoyed reading about the latest anti-emetic and how (as a proxy) it reduced the weight of vomitus!
But do folks with cognitive disorders suffer? The behavioral signs associated with physical discomfort (“pain facies,” fidgeting for comfort, etc) are usually absent. But what about episodes of “irritation and agitation”? Can their suffering be masked?
Some folks seem surprisingly “Matter of Fact” about their own condition (hence the poem), especially in social contexts, but there can be tears and sadness in private contexts. Is that suffering?
Mr. Rook has an inspiringly positive outlook on his own condition, seemingly far from the Buddhist concept about pervasive suffering (not that I really know). But in cancer medicine, needing to have a positive outlook all the time sometimes boomerangs, and the late Dr. Jimmie Holland, a cancer psychiatrist, wrote about that (from her NYT obit, linked):
“It’s bad enough to have cancer,” she told the website Medscape.com in 2015, “but when all of your family and friends are saying that you have to be positive and you have to fight this thing, and the patient is exhausted and beaten up by the treatments — it seemed to me that adding that burden to be positive was just ridiculous.”
OK, this is a caregiving website right? Do caregivers suffer? Yes, I think so, but it’s personal, and the magnitude as well as impact is personal. Should caregivers find someone to talk to about their own feelings? Yes, I think so. Should caregivers try to be positive? Yes, I think so. (You get it, I’m not being prescriptive, here.) Is being positive really “lying,” as might be construed by that great New Yorker piece last year “The Comforting Fictions of Dementia Care”? hmmmmm…..
George Rook wrote a terrific piece to start the conversation!
