I’ve read many memoirs and non-fiction books about cognitive decline and living with a beloved person who has a neurodegenerative condition; from Oliver Sacks to the recent biography of Terry Pratchett and many of the books we’ve read in my “morbid book group,” information in these texts connects with the personal emotions involved in deeply complicated human ways. There are also quite a few poetry collections themed around this type of loss, and I ought to compile a list one of these days, because poetry has been helpful to me as my family and I contend with elders dealing with forms of dementia (and there are many forms). That fact has led me to wonder whether readers even need another poetry collection centered around cognitive loss. Since so many of my poems during the past four or five years intersect with or explore that topic, I have considered making a manuscript of them. I hesitate. Too much sadness?

Yet while the circumstances that evoke such poems are usually sad, the disease progression differs, as do the personalities of the persons with cognition loss and the personalities of their loved ones. Perspectives on the persons and the diseases also vary a great deal. Similarities exist–enough to make a reader feel recognized–but situations and value systems mean there are as many ways to write about dementia as there are to write about anything else. My mother-in-law and my mother both were diagnosed with the same thing, vascular dementia, but their living situations, support, and the ways they responded to the aphasia and the cognitive effects create two different stories about the disease.

These days, my mother sometimes seems unmoored from the present moment, but not absorbed in memory either–just kind of lost in the ozone. Self, language, memory…sometimes they slip away from her physical body. In this process, though, she has things to teach me. Just as my hospice patients do, and as their families do, by helping me to widen my understanding of human beings and how we get by in the world. Or how we flounder differently from one another. Or how we rescue one another.

I take this gradual loss into myself–that’s what most of us do–and it’s hard, it’s painful to keep myself open to learning and love when what I first notice is untethering and loss. But yesterday when visiting my mother I noticed she has a cobbled-together notebook in which she sometimes writes (in tiny, indecipherable script). Some pages she had divided into three columns, some have scraps of letters or newspaper clippings stapled to them. Are her pages a record, or a practice? She cannot tell me. Yet it was kind of amazing to realize she does this with apparent intent. She has her reasons, if not her reason in the classic sense.

For all that visiting with her generally means a slow amble down the hall or sitting beside her while she sighs, eyes closed, drifting–despite the emptying hours–she is a Self, and she interests me. So I grieve the loss of who-she-has-been and anticipate the sorrow I’ll feel when she dies, but not everything either of us experiences is sadness. Of the poems I have read about losing a beloved person to neurodegenerative conditions, the range in scope covers a vast continuum of human existence, from misery and resentment and sorrow to revelation and even joy. Why would I avoid the full experience life offers?