Attend to what love requires of you, which may not be great busyness. —Faith and Practice, the British Society of Friends
I have spent more than a decade attending my parents’ slow decline. My father died in late 2006 in his late 80s; my mother turned 94 earlier this year. It is not what I intended to do with my own midlife. It is not something that many people really think about.
My first impression of grandparents was that they simply kept going. For those I knew as a young child, there came a time, in their early 80s, when they could no longer live alone. Each in turn moved in with my family, and each, in less than a year, died after a brief hospital stay. So none of us—neither my parents nor myself and my siblings—had expected the long and painful twilight my parents came to experience.
When my parents, in their own 80s, no longer had the health to live independently, they moved to a continuing-care community. We knew that there might come a time when one would need skilled nursing, the other less intense assistance. And so it occurred. In my father’s last months, my mother was still able to visit him easily—a quick wheelchair ride down a corridor and up an elevator, from assisted living to skilled nursing.
We were, as these things go, fortunate financially. Thanks to my father’s thoughtful long-range planning—a paid-off mortgage, a corporate pension plan with retirement and survivor benefits, long-term care insurance—the funds were available to support more than ten years of quality assisted living and nursing care. Still, we watched the dwindling funds carefully and with concern, since there was no discernable end date.
My mother, all her life, was a reader, a writer, and a thinker. When what we refer to as “the big stroke” hit her in 2010, she kept her mobility and dexterity, but overnight, she lost her ability to read and much of her ability to put her words in order.
Over time, these abilities would return in part, though never fully. But I had gone to the hospital the first morning after her stroke and—routinely, unknowing of her condition—handed her prayer book to her. She snatched it from my hand and desperately turned over the pages, and then she pushed the book away. I did not realize at first what I was seeing: the words on the pages made no sense to her.
She was furious those first days—furious at the hospital staff for keeping her there, furious at me for “not letting her die,” and furious, I suspected, at the God who had allowed this to happen to her. As to “not letting her die,” there had never come a moment when her survival had been in doubt, and I shared this fact with her. Here she was; this had happened; and we would deal with it.
“Some people,” she said to me bitterly, “simply go to sleep after lunch and don’t wake up for supper.” I agreed that would be easier. But here we were.
Even in her last months of lucidity, my mother was a doer. “How can I help?” she would ask the staff. “Is there anything you need me to do?” Contemplation and introspection were not hers by nature. Even after her permanent move to nursing care, she repeatedly queried, “Is there some task?” I wondered if the underlying question was whether she was still here because there was some task undone. I could not give her the answer.
The question of ministry was one that she had grappled with for many years. She had determined that part of her ministry in the retirement community would be, simply, kindness and politeness. She was, nearly unfailingly, gracious and grateful with members of the staff, pleasant and patient with her neighbors. She had observed angry, sometimes violent, outbursts of other residents—including, God help us, my father at times—who could not suppress their frustration and anger at the bodies that had betrayed them and their fear of the accompanying loss of dignity.
I was one of the few who witnessed the wheelchair-pounding, snarling frustration which my mother could not always suppress. A wise friend observed that, for my mother, the loss of words was a disability in a way that stents, wheelchairs, or arthritis had never been. Like eyeglasses, which she had worn for more than 80 years, those kinds of handicaps were simply to be dealt with.
This was different. So much became new every time it was mentioned: the operation of a TV remote, the speaker button on a telephone. Books were laid aside, and she did not care for audio books, large print, or even much television. Despite the more fragmented words, she was “still in there,” and for a time I could often guess the direction of her thoughts from a word’s beginning, a gesture, or the vowels in the middle. “Yes,” she would say emphatically, and we would carry on.
But the dimming of eyesight and the reduction in easy communication also brought the benefit of being able to sit, to reflect, to enjoy sunshine and breeze and the budding of leaves. Apparently, the “task” had become simply to wait upon the Lord. “Be still, and know that I am God.”
A collector and keeper for much of her life, the final move from assisted living to skilled nursing provided her a new opportunity. When I asked her what she wanted brought to the new unit, she spoke of how little her parents had each carried when they crossed the ocean to America. And so we carried little: a selection of family pictures, a few beloved books, a limited amount of clothing. This seemed like so little for a long-ago art history major, a woman who adored design, color, and style! The family dispersed a host of mementos that my mother had saved: a snippet from her wedding bouquet, my father’s neckties, hundreds more books, programs, photographs, and letters.
Much later, as she began to accept that we were on what she termed “the final leg,” she asked if there were things still to be returned or gotten rid of—library books or clothes to sort out. We had already ensured that no book in her room had a due date; everything there could stay until she no longer needed it.
Her room began to resemble a railway platform. I would sometimes find her napping in her wheelchair, her favorite blue fedora on her head and a large stuffed bear at her side, and I would think of a little girl waiting to go home. Once, sitting with two of her offspring, she said, “I worry about when my train is going to come.” We said to her, gently, “This is one you won’t miss. When the time comes, it will stop for you.”
I noted the cozy, memento-filled rooms of other residents on her floor, and it made me cringe. But with limited eyesight, what need for pictures on the walls? More furniture would simply make it more difficult for her to maneuver her wheelchair. She made the choice to “cross the ocean” and had set aside many earthly treasures. As a wise friend observed, she is handling this transition in her own way.
In the final stretches, we faced questions none of us—my mother included—had thought about before. At what point must one finally accept that modern medicine can do no more—that one’s physical body cannot withstand a heart operation or a hip replacement? Much as one wishes for one or two more operations to “fix” those failing eyes now dimmed by cataracts and macular degeneration, one’s body is too frail to withstand trips to the doctor’s office, even with medical transport and an attendant aide. Add to that the issues of communication and of memory—how well can one communicate with the medical specialist or remember one’s own medical history?
Was her life prolonged by the stent she had implanted a decade before, shortly before she and my father gave up their house? This is not a question I can answer, and it’s not a decision I was a part of making. We all do what makes sense to us at the time, and my mother’s stent prolonged her life enough to be there for my father’s last, bitter years of struggle with dementia. So at the time, it was the right choice for them, for their partnership of more than 50 years.
She did not anticipate that she would live so many years after my dad had gone. She has said as much to me. The additional years did give her time to see her eldest grandchild enter college and to know and enjoy the youngest ones whom my father did not live to see. The family took up videoconferencing, bringing images of distant grandchildren to my mother and allowing the oldest and youngest of the family, each with little language, to wave to each other across the miles.
Gradually the membrane between time and eternity became less solid. At times she “time traveled,” in the family phrase, and we learned to accept any manifestation as normal, because it was normal to her. There was no point in saying, “But Grandad’s been dead since 1934!” If she spoke with her father two days ago—and he told her something that she found “very helpful indeed”—so be it. She was clearly easier in her mind after such encounters.
She wrestled with the actual going-out, and none of us in this existence can fully help with that, for we have not yet experienced that final passage. I can only speak of the extent to which our discussions seemed to give my mother some comfort and some peace. We discussed a special effect in films: the slow dissolve, when one scene is slowly overlaid, and then replaced, by another. I reminded her that this body is temporary; the wheelchair, the arthritis, the poor eyesight are not for always. We spoke of seeing “through a glass, darkly, but then face to face.” We spoke of the images from C. S. Lewis’s The Last Battle at the end of Narnia, when everything after the last battle is “more real” than all they had known before.
There is a difference between reading and experience—between what we profess to believe and what we live and act out. And it is here, in the end, waiting on the doorstep of eternity, that we come to see this truth, if we had not come to terms with it before: to “trust God,” a phrase that sounds so simple, but is quite difficult for a “doer” to accept, because we are so used to acting rather than being acted upon.
Then there came another phase, triggered by a fractured hip. My mother, at 93, was found on the floor, apparently having tried to stand from her wheelchair by herself. (After one has been standing up and walking across the room for 90 years or so, yes, one might forget that things have changed: (a) It is necessary to put the brakes on the wheelchair, and (b) one ought not attempt to stand without help, because the arthritic hip simply won’t hold.) The spirit was willing, but the flesh was far too weak.
So we found ourselves, yet again, in the emergency room, and the bay was one she had been in before and recognized. The emergency room doctor was low-key and comforting; the orthopedic surgeon was practical and kind. By the time the ER doctor, the surgeon, and I gathered around the x-rays, my mother was asleep from the medication; the pain had been too much for her. There was the fracture—not a mere hairline—and there was a significant amount of arthritic damage already present in the same bone.
The options were three:
- A full hip replacement. But she was in her 90s, fragile and often disoriented. No.
- A “nail” which would at least stabilize the break. Despite the amount of arthritic damage present, it was worth a try.
- Nothing. Send her back to her nursing home with lots of painkillers. “And how would that be, for her?” I asked the surgeon. “Like that,” he said kindly, nodding towards the bay where my mother lay unconscious, “but it doesn’t look as if she’s going anywhere just yet. Does she make her own decisions?” “As much as she can,” I said. “I have all the powers of attorney, but I don’t want her to wake up and second-guess us.”
So—pending her approval—we decided to stabilize the break. I emailed the options to far-flung siblings. “I can’t imagine turning her into a vegetable,” I wrote. They agreed. Late that evening I reviewed the options with my mother, and the operation took place the next morning. Three days later she was returned to her own bed in the skilled nursing unit of her retirement community, among people she knew. She responds well to physical therapy and moves about independently in her wheelchair. However when I visit, although she’s glad to see me, she cannot always remember who I am.
And this is now Gethsemane. I have come to have great empathy for the disciples who either fell asleep or simply fled in the end, too exhausted, too frightened to walk the final steps with their Lord. One friend has pointed out that they were forgiven for that weakness, and they, too, were present at Pentecost.
We may have held our last family videoconference. And a wise friend has reminded me that the chances of the far-flung family being gathered at my mother’s bedside in the end are almost nil. We do not know if days, weeks, months, or years are left on this journey.
I try not to look back. The mother who raised me has already gone; there will be time to remember her in years to come. The woman who is here, who often does not remember who I am, knows generally that I am on her side. But I cannot manipulate space and time, and bring her train to stop for her.
Yet I see in my mother’s grandchildren the traits that do not die: the facility with language and with music, the enjoyment of color and line and style, the sheer stubborn determination, and the concern for helping others. And my mother had carried these forward from the generations before her.