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Sentient Beings: A Justice Story

January 26, 2014

Why I, who benefited the least from my uncle’s estate, was the one to gift his caregivers

Bernett Belgraier Ec. justiceUpon disbursement of my uncle’s estate, a year and a half after his death, the personal checks that I sent were accompanied by notes expressing gratitude from him, his wife, and me. Lorene was the longest-serving amongst the stable of some two dozen private-hire aides who had cared for my elderly aunt and uncle. Gina was a neighborhood physical therapist turned family friend. Carl was a part-time aide. I had assumed the roles of my aunt’s and uncle’s harried, round-the-clock healthcare steward, advocate, and proxy, and oversaw their operating finances in addition to their large, cluttered apartment and practically all who serviced it and them. Even the food prepared for them, I had personally shopped for (at their instruction). Other hats I wore included sheriff, detective, and warden: the merciless scourge of all who would do them wrong; and town crier and gatekeeper. I was, in a word, busy, and for years. Including the executor, six next-of-kin shared more generously than would I in the very estate that I had preserved. This was the fortunate but wholly unintentional consequence of my meticulous orchestration of a complicated situation: I was committed to helping these seniors avert terminal admission to a nursing home. Since my uncle’s death, I had raised with the executor, at least twice, the issue of nominally gifting select, long-term help. I’m convinced that my uncle would have approved, if not insisted. However, I intuited early on that my quest was futile, and I would soon learn that the will hadn’t been updated in two decades. By the time my uncle knew he could no longer procrastinate about doing so, with concerns primarily about me, the executor had counseled him otherwise. My participation in the estate was left to the discretion of the others. Like-what-youre-readingAdmittedly, I was resentful that I, having received monies from my aunt and uncle while they were alive and therefore, the executor had decided, would receive the least after their deaths, found myself the sole gifter to other employees. Saddled with a mountain of accrued debt, having raided and extinguished my IRA (for which I was penalized because of my age), I was a 50-something Boomer elbowing my way back into this pitiful job market. The gravity of my situation was dismissed by the named heirs with quips about my being “young,” (true, younger than they were) and inane pearls of wisdom, my favorite of which was that “You just go back to what you did before” (consulting). But I knew the right thing was unambiguous (morally, anyway, as legally I was disenfranchised). These checks had to be sent and they were overdue. My much beloved aunt and uncle had navigated their long, productive lives masterfully, but they’d had much more difficulty confronting the inevitable. In addition to never having revised the will, they hadn’t signed DNRs (Do-Not-Rescuscitate statements). Despite being confined to wheelchairs for some time, and my aunt having been robbed of decipherable speech in the end, they availed themselves of any and all opportunities to see one more day, at any and all cost. It was incumbent upon me, vested as their agency, to protect their free will, secure their dignity, and actualize their very articulate wishes to soldier on, even though I chafed at the frequent dissonance between the latter two. A professional geriatric care manager would have wiped them out (or so I was later advised). I was far cheaper, unquestionably more devoted to him, and was said to have done an unparalleled job. Staff did receive bonuses and gratuities along the way, all issued by me at my uncle’s and aunt’s behest. But then came that final week, when I brought him home from the hospital for the last time, which was a year after his wife of more than half a century had died: those unthinkable, inconsolable months he had endured without her. Relegated to the distant past were now some forty ambulance trips to the hospital ER, most resulting in admissions ranging from a week to three; four stints as an ICU intubatee; physical rehab stays at two sub-acute facilities; and endless at-home health-related appointments and wheelchair transports to in-office appointments. Wherever my uncle landed, I could be found doing my medical “Mama Rose” routine: questioning, reminding, protesting, cajoling, and thanking. Hospital personnel knew my uncle came with his own entourage that cut their workload in half, and credited the extension of my aunt’s and uncle’s lives to their quotidian care. One doctor referenced me to the other, chortling, “With her who needs medical charts?” One nurse practitioner was adamant that I be proactive about having him reconsider his full-code status. She told me that none of her patients had anyone like me in their court, laying squarely on my shoulders the responsibility for shepherding my uncle to a “good death,” despite his pronounced insistence that he would fight until his lights went out. In the end, it was the stroke that, having altered his cognitive status, managed to do what no one could; and the visiting hospice nurse would assess his time as hours to days. His combative episodes, courtesy of the stroke, knocked the wind out of us, even as we labored mightily to prevail upright. In his final hospitalization, he had pulled out his IV in the middle of the night, wrestling the poor nurse who had to replace it. All the while he had called out my name, that I should get him out of there and that I would know what to do. Lorene and the others sought to spare me until later from knowledge of this overnight hysteria, but for years had amused me with delicious reports that when a situation emerged that called for action, he would instruct them to let me handle it because, “She’ll fight with them.” Back in his bedroom of over forty years, medicating him now became an Olympic team sport. Gina assisted us in subduing him while Lorene prepared to flush the hospice-prescribed narcotics through the PEG tube, which had been surgically implanted into his stomach some time ago and was used intermittently during bouts with dysphagia or while on NPO orders. He alternately shoved me away and frantically grabbed me to him, using me as a shield, fiercely pressing me down upon him as if petrified of being snatched off by some phantom menace, and latching onto whatever his hand could blindly grab for in a panic: my bracelets, earrings, watch, even my bra straps. Lorene remained at the foot of the bed, syringe packed and poised, while Gina helped to liberate from me what they could while I was in his grip; luckily, his nails had already been trimmed. Still, this WW II vet, rabid New York Giants fan, and son of the Lower East Side was powerful. Thunderous salvos that he couldn’t breathe emanated from lungs that had suffered so serially with aspiration pneumonias and pleural effusions, and lobes having collapsed several times from fluid that needed to be drained by chest tubes. By now, this much I at least knew: If he’s yelling, he’s getting air. When he pushed me down to his groin, where a while back a suprapubic catheter had been surgically placed into his bladder (an improvement over that original awful Foley that had gone up his urethra), I accommodated him, unclear as to whether this was an attempt to communicate pain, or some regression into some pre-verbal state of being. When he barked to have his shoes put on, Gina encouraged us, allowing that it might herald a very welcome departure. We were all game, wondering where he would “go” once we put on his clunky, orthotic sneakers with Velcro fasteners — but he didn’t go anywhere. He howled that he was going crazy and that he was dying. What do you say to someone who has so feared death, whom you so love and has been so afflicted, when, as they lay dying, they yell in psychic anguish that they are dying? We reassured him that he was safe with us, in his own bedroom, with the TV on, as usual, parked at his political shows. Prior to the stroke, upon waking from night terrors, the aides would succor him with elixirs of ginger ale, juice, or even ice cream to convince him that he was still alive. In response to this pugilistic demonstration, and mindful that hearing is the last sense to go, I confronted Lorene in a whisper that perhaps we could give him more medication than what had been prescribed; perhaps, even all the medications at once? Gina, bless her, reined me in. “Don’t do that to her,” she softly admonished me. Glancing at my uncle, now adrift in narcotized slumber, we turned one to the other, shaken to the core, and asked: This is what was sold to us as “comfort care”? For the safety of everyone, I insisted that all shifts be worked in pairs at the very least, but no one at any time was to work alone. Once the visiting nurse had his meds tweaked, the whole do-it-yourself, at-home death protocol moved along. But I doubt any one of us will ever forget it. Some days later, mere minutes after I had left him for the night, as Lorene and the others were washing him, my uncle died. Some say he was waiting for me to leave. In fact, he went out in Lorene’s arms, just as his wife had and around the same time of night. Having been summoned back by Lorene, I flew in a cab the handful of blocks and arrived at his apartment for the fourth time that day. Careening through the foyer to the dining room, I glanced at the very same floor which, back on that night about a year prior, EMS had my aunt supine on a spine board, half-naked, working to resuscitate her ancient, tuckered-out heart. They eventually did (no DNR, remember?), though I had her taken off the ICU respirator less than forty-eight hours later while holding her hand; released her for good. The sorrow of explaining this to my debilitated uncle, in between hospitalizations himself, and of sitting with him in the depths of his despair, may have changed me forever, but who had time to process that then? I approached the fork in the hallway. To my right, Lorene and the others, all pretty sleep-deprived, were huddled on the couch, in the living room, staring at me, and said not a word. I looked to my left, to my uncle’s bedroom. Though it had been less than an hour since I was last there, his eyes were already sunken in their sockets and his complexion pasty. No gurgling in the back of the throat, as had been the sound track to this past week; just the familiar jabber of the political talk shows on the TV and the motor of the oxygen concentrator. But there soon came that curious moaning, and air-gulping, heaving sobs, and I pressed my uncle to me, concerned neither of propriety nor inflicting any pain by pulling on something. He felt warm and soft, and smelled lovely. And from behind me I heard muffled voices and then a brisk, “No, no! Leave her alone and let her cry!” So, I had to conclude that they were talking about me. As my 88-year-old uncle had finally surrendered his body to time, so I surrendered my executive brain function to my aggrieved, primordial heart. And the sobs began to tax my throat as the years of tears kept flowing. And we all closed a profound chapter in our lives shortly before midnight. In caregiving, especially more advanced caregiving, there is what I have come to call “the responsibility of proximity.” Furthermore, it lends itself to emergency management over-exposure. Anyone who professes otherwise is disingenuous or an idiot. And those precious “feelings,” so exalted in our American culture — or perhaps in my generation of Americans — become unaffordable luxuries once circumstances dictate that you act more and feel less. Medical professionals develop necessary strategies in order to detach. But Lorene and others who care for bodies and minds, those most vulnerable vessels that are no longer sovereign, all while embedded in the fabric of our homes and lives, do their jobs only by virtue of their ability to attach. So have a care, friends and relatives. Lorene didn’t leave my uncle’s side for a week, denying her own family and many of her own personal needs. She knew she was on the precipice of financial disaster and, I understand, even lost her apartment before landing another position — and she’ll do it all over again, when she concludes this new job, though she’s wracked with her own grief and mourning. I am not convinced that new home health aide labor and wage protections will do much to improve a situation so human and financially complicated. My gift to her was an attempt to recognize her valuable place in a seminal saga, and the pain she had shouldered, having done her job so well and more importantly, sticking with it to someone else’s end. While it wasn’t the first time Gina had showed up for us in all sorts of ways, she arrived at the apartment near midnight upon uncle’s death, and stayed with me, even after I dismissed the aides and sent them home to sleep. The undertaker was detained, and despite her fast-approaching, heavy morning schedule of clients, Gina would not leave me alone. There we sat, well into the wee hours, keeping whatever we believed there was of him company and celebrating his transition from the past years of absolute horror to whatever awaits beyond (that has to be better). The funeral home issued a discount due to the removal delay, from which the heirs would obviously benefit. My gift to Gina attempted to exact some justice for her. Carl wasn’t sleeping over in the apartment that week with the others, but they had called him in the middle of the night to tell him my uncle had finally gone. He arrived at the apartment at 9:00 the next morning, figuring he’d be needed. Or so he says. When he called me from outside my uncle’s door, no one there to let him in, he was crying. I think he needed us, actually. He came in by train for nothing; I wanted him to have something. I have considered whether gifting sullies acts of human decency and warps what simply are honest (low-wage), livelihoods. But pathologizing is a tactic adopted by those who, uncomfortable with the debt they owe to others, seek to obfuscate the facts of life on this here Earth, in an effort to keep from squirming out of their hot-blooded skins. We need each other and will always be in debt to someone. No more so than at the end: our own or someone else’s. As I straddled terrains of labor, management and family, my position here was indeed unique. I can state with conviction and authority that no one but the caregiving team, which I directed, had such relationships with these deteriorating, needy bodies and brains: the parchment, mottled skin and the fiery, sanguine sores; the arthritically and neurologically hijacked spines, limbs and digits; the surgically placed tubes, suspicious conduits for opportunistic infections; the blood and tissue material that would erupt for weeks on end from a previously irradiated bladder, putting my catheterized uncle into dangerous urinary retention. My aunt and uncle drew strict boundaries when it came to being hand fed. They only allowed us to feed them and my uncle, when he needed it, only allowed us to do so in private. Naturally, incontinence was an enormous humiliation for both. Even before they hired aides or were fully incapacitated, I was intervening in such intimate emergencies. No one else sat for hospital duty, certainly beyond a visiting hour, in the stifling heat of an urban summer, or respite seasons of fall or spring, or in the chill of winter’s short days, observing infection precautions while encased in plastic like a sausage, tending to my uncle’s dire need to be repositioned every few minutes. Within a few weeks, sometimes days, of being discharged, we’d be back at the hospital and at it all over again: his choice. Others were spared from seeing my uncle as his airway was deep-suctioned or intubated, so he could breathe; or his crazy-making hunger and thirst when deprived of food or drink. They did not witness his screams at attempts to find veins that worked or shove that prior Foley catheter up his obstructed plumbing (young medical residents learning their trade). We were the ones to absorb his rage as he endured treatments for hospital-acquired bugs that fomented gastric chaos requiring a rectal tube. They did not hear his bereaved calls for his wife, during quiet times, while stroking his arm, as he arrived at the realization that it was not a night terror this time, and she was not there, would never again be there, to respond to him. Most specifically, only I sat with him, in his bedroom, in the presence of infection’s early warning signs with which we were all too familiar, and in a scene tediously played out so many times, held his hand to calmly ask, “Do you want to go to the hospital and go through this all again?” I was not forced into any of it; I didn’t leave my uncle alone in this devolving mess because I just never could. I owed my aunt and uncle a debt for so much since my childhood. I tried my best to repay; I hope I made a karmic dent. In that final week, I began to inch my way back to feeling, enabled by others. They picked up the detritus that was left behind when the last of the lives I had been charged with piloting charted a course for irrevocable diminuendo. No more decisions for me make and execute. Family may or may not be caregivers, but caregivers are always family. The gifts to Lorene, Gina and Carl were mine — perhaps, only mine — to give. It is right and fitting that they come from me. So, although I had intended to contact each heir, with copies of cancelled checks, asking if they’d care to pitch in, I never did. I gave these modest gifts — tokens really — because Lorene, Gina and Carl were there with me, assuming so much more of the burden, so I could be left alone, and let to cry. Upon answering “yes” to three simple questions that confirmed Lorene’s employment with us, I apologized to the nursing home Human Resources representative for the ensuing catch in my throat. She commented from the other end of the phone that it bespoke more of Lorene’s worth than would any additional monosyllabic responses to any additional silly scripted questions thrown at me. I was then profusely thanked for my trouble, yes, trouble: returning her phone call (and promptly). What a world. Bernett Belgraier, a New York-based writer and nonprofit consultant, has completed a manuscript about her profound life detour into family eldercare. She has yet to Tweet, Blog or LinkIn, and wonders how long she can carry on before admitting that she won’t get anywhere unless she does so.