Enter Mourning: A memoir on death, dementia and coming home
By: Heather Menzies
It’s so important to face facts and to shoulder responsibilities such as arranging for power of attorney for financial affairs, for medical care and for personal care. It’s so important to have some “advance-care directives” in place, a living will to guide medical decision making when dementia has robbed the person of the necessary cognitive ability to decide for him or herself. It’s also part of the journey, its own place and time for mourning.
Chapter 5: Medical Power of Attorney (excerpt)
Part of me wanted to stay where I was, snuggled in the clasp of Mum’s hand in mine, just the two of us in our own little bubble of time. Part of me, though, was alert. I knew Mum’s world had shrunk, and that her capacity to do what little she still could do derived in part from being on this floor, behind a locked door, what the literature calls “sheltered freedom.” The “lock” involved said it all. It wasn’t some sinister, remote inscrutable affair, but a keypad mounted low enough on the wall that anyone could reach it, with a code consisting of 9,8,7* that never changed. It was laughably simple, for me. Yet for Mum, her custodians might just as well have left an old-fashioned length of chiselled metal casually in full view on the table beside the door, locks and the keys to open them were that far beyond Mum’s reach to grasp and make the connections. It was up to me, to us – her four children — to negotiate the larger world and its formal codes and keys.
The law is very clear, I’ve subsequently learned. If a person is deemed incompetent to grasp the implications of choices that affect their life and health, someone else must decide for them. If a family isn’t willing or able to take this on, the state will intervene with all its cumbersome procedures for evaluating a person’s capacity not only to understand and communicate but also to reason and deliberate. This is crucial. Making medical-treatment decisions requires enough “cognitive capacity” to both comprehend a proposed action and to judge how it relates to one’s goals and values and what “the good” in life actually means – perhaps something other than just staying alive. This capacity is called “competence” and is deemed a “threshold” distinction under the law. If there’s any doubt, a formal evaluation determines whether you have it or not. If not, that’s it: someone else must decide for you….And so, that weekend when I came to talk about medical power of attorney, we logically gravitated there. Mugs in hand, we walked up the back lane, taking in the moist quiet of the early autumn day, remarking on this or that and then falling silent. At the rock we settled ourselves comfortably on two of the stones in the circle. I looked at the rock, our lineage and our bonds spelled out in stone.
“So,” Dick said, which told me he was ready. I took a breath, feeling it ragged in my chest, thinking of Mum sitting up on her bed waiting for me to make tea. I was aware of a breeze sighing through the evergreens, enveloping Dick and me like an ancient blessing, mitigating silence and our breaking of it here. We talked about the spirit and intent behind putting down limits to medical care for Mum now that she was clearly past the point of being able to enunciate them for herself….
The idea of an advance-care directive is to provide “guidance principles.” But for them to take precedence over what a doctor might consider in someone’s best interest, they must be clear, and backed with a strong statement reflecting the person’s will and self-determination. A person’s mere preference, such as not to needlessly prolong life, is not as good as a statement of “deliberate choice,” which is considered a “performance” and an “act of will’ under the law. So there was a moral point and responsibility in what Dick and I were doing under the shelter of the rock and the trees. We had to use words: precise words, with formal standing in the world.
There was a lovely tenderness in our conversation that morning yet also a certain reserve and careful politeness. For me at least, it was an almost necessary buffer. I was sitting there with my brother discussing not doing this and not doing that in the event of our mother getting really sick. We were drafting a document intended to not let others step in to help, not to offer all the health care our public system makes freely available to all. We weren’t just listing the obvious things like respirators and tube feeding, but subtler, savvy stuff like “pressers” to maintain cardiac output. We were talking about withholding that help, thinking this is what Mum would want: to simply be allowed to die. The politeness and formality were a screen. We talked behind it, masking our actions, hiding our intentions even from our deepest selves, because we were trespassing on her agency; this once fiercely independent person who was “always in the driver’s seat of life.” We were taking over!
I can recall speaking to Mum about the document. I had it in my bag when I arrived, and she greeted me as always: “Ah, there you are,” her face blooming into a smile.
I told her about the living will, the medical directives we’d talked about. I kept my eyes on Mum’s face. She kept her eyes on mine. I felt her hand squeeze mine, and squeezed hers back.
I explained about the limits Dick and I were proposing, because, I said, “we don’t think you want to be kept alive needlessly.” I can’t remember whether my voice quavered at the word “you” because the enormity of what this involved was absolutely real to me in that moment. Mum was still looking at me intently. It was as though she was reading my lips and peering right through my eyes. To know if I was sincere, if my heart was pure? Perhaps. Since Mum’s death and all the reading I’ve done since, I now know that Alzheimer’s doesn’t just take away, but seems to actually give something back.
In his book, The Man Who Mistook His Wife for a Hat and Other Clinical Tales, Dr. Oliver Sacks reflects on what he’s witnessed or been told about people with severe aphasia (loss of language). He recounts hearing a group of patients burst into laughter while watching then-president Ronald Reagan giving a speech on television. Unable to grasp the import, the meaning or content of his words, they were instead listening at an entirely non-verbal level, catching all the “extra-verbal” cues like gestures, tone of voice, rhythm of speech, and inflection. They laughed, Dr. Sacks wrote, because what they heard was Reagan as a phony. Explaining this, Sachs notes that speech isn’t just the articulation of cognitive thought. It’s “utterance,” or as Marshall McLuhan once artfully re-phrased it, “outerance.” It is a physical rendering of expression. For people with aphasia, which is a standard feature of dementia, when cognitive communication declines, the capacity for perception in communication at the level of bodily expression seems to increase, he says. The capacity for expressiveness is not only “perfectly preserved,” Dr. Sacks writes. It’s often also “preternaturally enhanced.” He quotes the English neurologist Henry Head, who borrowed the phrase “feeling tone” widely used by African Americans, especially in the South, to name this non-verbal aspect of communication. We’re Homo loquens before we are Homo sapiens, Dr. Sacks suggestts, and people with dementia remind us of this in their seeming “inversion, and perhaps a reversion too, to something more primitive and elemental.”
They have “an infallible ear for every vocal nuance, the tone, the rhythm, the cadences, the music, the subtlest modulations, inflections, intonations, which can give—or remove—verisimilitude to or from a [person’s] voice.”
In short, Dr. Sachs writes of the laughing patients he observed, they were “undeceived and undeceivable by words.”
I didn’t know any of this at the time. I kept talking to Mum as if she could comprehend at least something at some level because that’s what my intuition said, and what I wanted to believe. I also did it for myself. I needed to stay connected, to keep my finger on Mum’s inner pulse, to steady myself in this journey we were on together. A journey toward death; with this document we were approaching if not entering its border region.
Did Mum realize this too? I have no idea what sense of all this she was making. Only that she kept looking at me hard. When I was finished, she smiled, but said nothing.
“Do you think that’s okay?” I asked eventually. She squeezed my hand again, still looking at me, reading something off my face. She nodded, said something like, “That’s fine,” and smiled.
I asked if she wanted another cup of tea. “Yes,” she said emphatically, and handed me her cup.
All Contents Copyright © Heather Menzies