Standing in Awe

Love, unbound by time, expands even as life contracts.

It seems curiosity ignites, and patience sustains love. Curiosity to discover what brings meaning and joy to another. Patience to manifest those wishes into reality, for however long. Love makes it possible to sit, stay and not flinch when things get uncomfortable. Rather, to get even closer. Love, unbound by time, expands even as life contracts.

Though admissibility to hospice care requires a person to have a prognosis of six months or less, the hospice benefit does not have an expiration date. In other words, no time limit or maximum duration of care exists. While under the care of hospice, the medical director for the team is required to attest on a regular interval, usually every three months, that a person remains appropriate for receiving hospice care. Eligibility hinges on the physician's ability to certify that in their expert medical opinion the patient is expected to live six months or less should the illness run its normal course. Because the person under the care of hospice is by definition not receiving any medical interventions explicitly intended to prolong life, it is the medical director's job to describe how the person's illness is progressing. In short, the medical director has to be able to say they would not be surprised if the person were to die in the next six months. Importantly, this in no way requires that people who live beyond the six-month time frame be automatically discharged from hospice. Hardly! They just need a physician to look at them again in that moment and ask the question, "At this point in time moving forward, would I be surprised if this person were to die in the next six months?" If the answer is "no", then the patient continues to receive hospice care. As no physician has added a crystal ball into their infamous black bag of tools, accuracy is a thing much to be desired but impossible to be held to account.

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Over the last decade of Keiko Setsuko's life, she has become progressively debilitated by Parkinson’s disease. By the time I enter into her life as the medical director of her hospice team, Keiko is on the brink of death, or the edge of life, depending upon how one views such matters.  

She is mute, stiff-as-a-board, unable to swallow more than minimal liquids and, quite frankly, dying at any moment. Given this, it is easy to certify her eligibility to receive hospice care. I did not expect that four-and-a-half years later, Keiko would have remained stiff-as-a-board, mute, swallowing barely any nourishment, and somehow beyond all medical explanation, still alive. What is responsible for her staggering longevity? Hoshi: her ever-present sister whose indefatigable care is sustained by love.

Hoshi worked as a nurse her whole life. Even in her retirement, she continues to provide tender and meticulous care to every living creature in her environment. This includes her grown daughter's 14-year-old, increasingly deaf and totally blind, black Labrador retriever. Even when he lost the ability to stand on his own and Hoshi's daughter found it too difficult to tend to the ailing dog's needs, Hoshi’s reservoir of love fueled her ability to support her daughter's grief while simultaneously caring for her daughter's dog to the end. This attention never seems to drain her ability to care for her own sister. Love miraculously expands to support what is needed.

Keiko was diagnosed with Parkinson’s disease in the mid 1990s when Hoshi began noticing a tremor and her sister’s changing appearance. Her mind began to slow, and her limbs became increasingly stiff to the point she lost the ability to move. Since then, despite Hoshi’s best efforts to keep her sister mobile, her right arm has become twisted and bent into her chest with her wrist rotated to the sky and her thumb indented from the pressure of her wrist against her body. Her left arm remains fixed straight at her side with her wrist turned in. Her left hand clutches a soft, rolled towel—a homemade grip—to prevent her nails from digging into the palm of her hand. Her legs are slender and perfectly straight, with toes pointed like a ballerina forever en pointe. Watching how Hoshi tenderly positions her sister to dress clean and nourish her is like watching a Bonsai master, motivated by love, undeterred by time.

One visit, Hoshi recalls the last time Keiko uttered a word. “It was my name, ‘Hoshichan’, in the middle of the night.” She pauses, dabbing the corner of her eye, before explaining that it is an endearing term used between sisters. “She called it just once after many months of silence, and then, no more. That was over five years ago.”

Hoshi never stops hoping she will get to hear her sister speak again. She even figures out how to use special dental tools to keep Keiko's mouth sparkling clean despite her intentionally clenched mouth whenever Hoshi or I come near. I watch Keiko squint her eyelids shut each time I approach her bed to examine her. My only chance of peering into her eyes and mouth is if I silently creep up beside her on tiptoes. Doing this, I can catch a glimpse of her eyes held in their fixed gaze to the right as her delicate tongue makes unintended, tiny gesticulations. Keiko has never developed a single bed sore, a single infection, a single anything since her brain turned her into a human tree. Not because I have some medically trained ability to aid in caring for such physically challenging tasks of daily living. I don't. Hoshi crafts unique props out of old sheets and towels to help support Keiko's twisted and knotted body to prevent pressure sores from ever developing. Hoshi sets alarms day and night to make sure she repositions Keiko. Yet it is more than Hoshi's sheer fastidiousness that maintains the delicate balance of care. This is in the realm of the sacred. This is care from the heart.

Outside the construct of hospice care, routine medical visits could be seen as redundant and unnecessary. Fortunately, the design of hospice and palliative medicine mandates we pay attention to the community of people impacted by an individual's serious illness. The hospice team knows that if anything happens to Hoshi, Keiko will likely die quickly. In the end, the best way to support Keiko is by supporting Hoshi. And the best way to do that is by being present and standing in awe.

During my fourth year of caring for Keiko, I visit on Valentine’s Day, bringing a single long-stemmed red rose for the occasion. Unfortunately, it is an unseasonably warm February day, so by the time I arrive at their home, the rose is already dying. Embarrassed by my limp offering, I apologetically hand the rose to Hoshi. 

“Oh, for me? That is too kind!” It is as if Hoshi is seeing an entirely different flower from the one I am holding. She coos as if she is receiving a jeweled scepter and not a thorny green stick with a mass of slumped petals dangling limply from a bulb. One jiggle and they will part from their hub and wither to the ground. But Hoshi’s steady hand and life force infuse new vitality into this blossom. 

I watch as she cups the flower gently in her hand and scurries about to "... find a suitable vase, some tape, water and, oh, some food!” Hoshi exclaims as she finds a small packet of plant food in a kitchen drawer. Within minutes she has it propped on a table poised to choose life or take a final bow.

An hour later, the rose looks renewed, as if it were unveiling itself for the first time. As I lean over Keiko’s head, my eyes continue to dance between Keiko and the rose. They each seem a reflection of the other: graceful postures defying life’s ticking clock. Seeing my astonishment, Hoshi humbly offers, “You have to balance the head just so, so it stands a chance of recovering. If you let it go, it won’t stand a chance.” 

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Though medicine may at times be able to sustain life, only love can magnify it even as it wanes.

For those with a nose for flowers, you will know that this is not a rose…. yet I’ve heard that a rose by any other name would smell as sweet;) This particular one goes by the name of peony and the scent escapes my nose (which some of you know is quite sensitive to certain kinds of scents—though that is a story for another story). Still, this flower seemed fitting for this story simply because a few hours before I took this photo it was a tight nub of a bud. I had purchased it (and its neighbors in the bunch) to bring a bit of joy to my youngest who was a bit under the weather. When I went to check in on him and the state of his mug of tea and bowl of penicillin (aka matzah ball soup) I actually gasped as I picked up his tray and saw this flower, which immediately reminded me of this moment with Keiko and Hoshi.

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