On Christmas Eve, about 0900 I took a call from a nurse at the Alzheimer’s/Dementia facility where my mother now resides. At her current age, 94, I was not surprised by the news: “Your mother’s in her bed, unresponsive; her left side is flacid, and she’s not following commands.”
Before diving into the emotional challenges this presented, I want to reassure you that as of now she’s exhibited a near miraculous recovery, with only a minimal residual left-sided weakness, which has left her a bit more at risk for falls.
So, back to the story… Ok, of course if she’s “unresponsive” she’s not following commands, but as a nurse, I saw no conflict in the report. It’s similar to what I’ve reported to physicians regarding patients in the ICU under my care. It’s the jargon…
My in-the-moment analysis – she’s had a stroke, and a significant one. What’s unknown – is it a clot blocking the blood flow to her brain, or is it a ruptured vessel bleeding into her brain.
My sister and I are both designated as decision-makers for her health care if she’s not able or competent to attend to her own needs. And, importantly, my sister and I are in agreement regarding our understanding of how Mom wants life-threatening events dealt with if she’s not able to answer for herself. She wants no heroics; no last-minute efforts to stave off the inevitable as long as possible; she’s DNR – that is, Do Not resuscitate. Further, no intubation (breathing tube driven by a machine to breathe for her), no artificial nutritional support – that is, no tube feedings.
As I dealt internally with the likely impending demise of my mother, I busied myself in gathering and confirming the documents regarding both her health care, and how she wanted to be buried – well, cremated – and her ultimate resting place next to my father. And, of course, I sent off an email to family regarding the turn of events.
For those of you who may not already know, my mother has suffered a profound loss of both long-term and short-term memory, and while not diagnosed with Alzheimer’s, she exhibits many aspects of that condition. For the last two years she’s not recognized me, nor does she remember her marriage to my father. When I last introduced myself as “Bob, your son.” She commented, “How can I have children? I’m not married.” She has, at times, identified me as her late brother, but there is no recognition beyond that.
So, I’m ok. No last-minute life-saving efforts; let nature take its course… Then comes the real-life turn of events. Late that afternoon I get a report: She’s up and walking with assistance; not following commands; and is exhibiting an expressive aphasia – that is, she speaks, but it’s a jumble of words in a non-sensical order – “word salad.”
Prior to this report I was clear about my options, responsibilities and decisions. However, her condition at this point is something unanticipated and damn challenging. She is conscious but unable to understand incoming information and unable to communicate her needs and desires. My dilemma? She’s unable to express her desires; she can’t feed herself and likely won’t submit to any type of external feeding strategies (Intravenous, or, a tube in her nose, or directly into her stomach).
Now what? If I follow her expressed desires there is no feeding by staff, by tube, or intravenously. But… She’s going to potentially experience both thirst and hunger. Furthermore, she can’t say what she wants – remember the expressive aphasia (word salad), nor can she understand any explanation as to why she’d be denied water and food. And, she can’t understand an explanation – the evidence being her inability to follow simple commands.
Back to the present. As I noted above, she’s back to her baseline. She still doesn’t remember who I and my sister are, but she is able to feed herself, make her needs known, and move about without assistance.
I remain unsure about what how I might handle a repeat of her event. What to do for someone who’s unable to understand incoming information, or express their desires, but with a previously laid-out plan for “no heroics” – no rescucitation; no life-extending measures. We really never covered the scenario briefly experience over the Christmas holiday.
Stroke – Stanford Health Care