Caregiving II: Dementia Widow
This article first appeared in the Minden Times on April 26, 2023.
I’ve always acknowledged that my experience of caregiving was the proverbial stroll in the park relative to the experience of others. But because of that, I felt an obligation to excavate and extricate on behalf of my comrades, the army I’ve been honourably (I hope) discharged from. In this column I’m referencing a not-yet-published book, my memoir.
The army is a big one, primarily female, and the caregiving roles are gendered. My focus is on spousal caregiving for a husband who is slipping into dementia, because that is my experience, which came after caring for that same husband when he was being treated for cancer. They are different experiences. Why? Because the person with cancer is recognizable as the person you married and loved; the person with dementia, by definition, is becoming something other than what he was. A hyperactive educator named Teepa Snow, a diminutive woman with an irreverent stand-up comedian style delivered in a delightful Cincinnati accent (she’s all over Youtube – check her out), re-arranged my brain when she defined dementia, not by its symptoms, but by its impact on character. When the person is becoming something other than what he was, she said, suspect dementia, long before The Test will allow a diagnosis. (I recognize that other conditions also make people other than what they ‘normally’ were – mental illness, addiction, brain malfunctions – and I think there are parallels in managing their care.)
Caregiving of any type requires that the caregiver subjugate themselves to the needs of the person for whom they are caring. And, if it’s done well, the cared-for is relatively unaware of the extent and maybe nature of the subsidy. Their sense of personhood is optimized within the circumstances; they are enabled to be as much of who they are as possible, for free, without the price tag of gratitude. Of course there is a price tag, it’s undeniable there is a price tag, but there is a sense that it is being disregarded. ‘For you, this is free; it's on the house.’
And that is what differentiates informal caregiving, the unpaid sort, from paid caregiving – which also has its place and is invaluable when well done. But it’s not the same thing, a fact the medical system tends to overlook, because conflation is convenient, and because science tends not to be holistic or humanistic. The upside of informal caregiving, that the caregiver is being a person rather than doing a job, is also its downside, because the caregiver as a person becomes invisible. Particularly with dementia, where the malfunctions that the caregiver is identifying and compensating for are invisible, the filling in of the mental gaps, if it’s deftly done, also becomes invisible.
My cared-for dementia person used to refer to me, lovingly, gratefully, humorously, with well-concealed desperation, as his external hard drive. Which made sense when it referred to lapses in recalling detail; we all, as our brains age, depend on group think to remind us of words or names or time frames gone missing. But it disregards the hard and never-ending work of figuring out what is missing before it becomes an existential crisis, a threat to sense of being. (In this way similar to parenting, except that at that stage of life, you are building a sense of self in the other, whereas in dementia, you are buoying the sense of self – in choppy, unpredictable water with strong under-currents.)
My image of caregiving was of my self being sucked into the gaps of his self as they appeared (and then disappeared briefly, inexplicably, leaving you an interloper in occupied territory, doubting your assessment of his functioning – maybe there’s more/different happening in his brain than I thought). I was vastly relieved when I discovered the language of trees, the mycorrhizal system through which the energy of the dying tree is re-distributed through the subterranean system of roots and fungi to its neighbouring community. It’s a comforting alternate image when you can see death as a natural stage of life.
I gave a name to my caregiving job, differentiating what I did from who I was (a good plan in life generally), which allowed me to take care (with minimal guilt) of the ‘who’ while doing the ‘what’. I gave away the name of wife when I acknowledged that the reciprocity that had characterized our spousal relationship was no longer possible, stopped trying to extract what was no longer available, accepted his vulnerability and terror – maybe too strong a word – of disappearing into nothingness. And created a new role called Dementia Widow, a woman who is married to a man who is no longer the man she married, who has an honorable job to do, and whose task is to do it to the best of her ability for as long as necessary.
That worked for me. We’ll talk about other perspectives -- Gordon Pinsent in Away from Me and Eiizabeth Hay in All Things Consoled -- another time.
