SIPPING A COLD GINGER ALE AT HOME IN HIS EASY CHAIR, dad was fond of saying, “I love this place… The only way I’m leaving here is in a box.” To his credit, this was his way of talking about end-of-life and letting us know what mattered to him. Not counting his calls to 911, each requiring a “fireman’s carry” to a waiting ambulance, dad got his wish. In good time, family, friends, and neighbors conspired to support his preference, but ultimately it was Hospice that made the difference.
“Tell” White was 88, could no longer walk, and had come to terms with being house bound, even before Covid. His devoted wife, Conni, was helpful to the extent that dad would allow, yet his stubborn need for control and independence was an ongoing source of isolation. This was just his way.
As is often the case with ailing seniors, a combination of serious health issues led to Tell’s final hospitalization… Conni called me with grave concern, saying, “this is it.” The hospital team diagnosed aspiration pneumonia and worked hard over several days to stabilize his vital signs in hope of moving him to “Rehab.” For a patient of dad’s age, wheelchair bound and in decline, “Rehab” is a more palatable term than “Assisted Living,” which in turn is easier to hear than “It’s time for a Nursing Home.”
Fortunately, dad’s granddaughter, Anna, arrived – who’s a hospice and palliative care nurse, and between us, we were able to convince Conni that we could provide excellent care for him at home. We asked for a family conference with his case manager and shared Tell’s preference to be kept comfortable. She in turn referred him to the Palliative Care Team who quickly saw that he qualified for hospice. That’s all it took.
Less than 24 hours later, he was brought home in a quiet ambulance on hospice. The crew brought him to the front door and six of us lifted the gurney up the familiar, well-worn steps for the last time. They rolled him into his beloved den where he was surrounded by welcoming family and an exuberant yellow lab. “On three,” we gracefully slid him from the gurney to a new hospital bed, set up just hours before. The bay windows beyond the foot of his bed allowed the late afternoon sun to flood the room.
“To neither hasten nor postpone death,” has been a foundational part of hospice since its inception almost fifty years ago. When time becomes a priceless commodity, there’s few approaches that rival hospice for seizing the day, while championing quality of life. Even though dad’s destination was a given, being at home, he now had a say in setting his course.
The renown psychiatrist, Elizabeth Kubler-Ross, (1926-2004) left a useful guide for the journey. Her famous, groundbreaking theory suggests that dying is universally marked by stages of denial, anger, bargaining, and depression, which ultimately give way to acceptance and surrender. These stages aren’t static, but fluid, as we continue to cycle through them until our last breath. So too for those who survive us, on their journey through grief and loss.
For years, dad had been working with acceptance through AA and its Twelve Step Program. The deep spirituality embedded in Reinhold Niebuhr’s “Serenity Prayer,” was Tell’s rock and his refuge. It served him well right to the end. For patients battling a life-limiting condition, the acceptance of hospice is a courageous step. The value of learning about hospice and saying “yes” to its model of compassionate care, cannot be overstated.
The windows in dad’s den looked westward to the sunset, to the back terrace, to an outdoor dining table, and to a large, open yard beyond… He was able to look out to a place of loving memories, of family reunions, festive meals, of dogs and children playing… Here in the den, which back in the day would have been called the parlor, is where he wanted to be… And there he came to rest.
Dad’s hospice nurse, Carmen, soon arrived to meet him and to do her “intake.” She met with him first, then with a small group of us around the dining room table. We talked about logistics, medications, his oxygen, and scheduling, while lightly touching on the unknown of “how much time?” It turned out to be six days… Carmen left with a kind-hearted smile, and we settled into this closing chapter, trusting that between us, our love and varied experience would see us through.
We each had our part to play over the next six days, taking care of ourselves, each other, and dad… His anxiety came and went, in part determined by the time of day, by his meds and by things we couldn’t see or anticipate. We were as good natured as possible, and took turns with various chores. Tell’s graceful and even humorous acceptance of end-of-life was extraordinary. The family’s beloved yellow lab may have been the best medicine. She slept there in the room with him, often putting her head or paw up on the bed to meet his hand.
It appeared that dad’s favorite time of day was still after dark, when he would hold forth, reminisce, and converse late into the night… Even though I was sleeping lightly in the next room, it was comforting to hear voices, ramping up for quiet to boisterous, as laughter drifted through the house into the early morning.
Anna was brilliant in her nursing duties, blending bedside skill with deep love for her grandfather… Conni and I took turns being the “night watchman” which for the first three nights was challenging… Dad was pleasantly delirious at times, but the careful use of morphine calmed his pain and breathing. The need to reassure and to comfort him was ongoing.
In the days to come, Tell’s oldest and closest friends either dropped by or phoned in to say farewell… We took turns holding the phone to his ear, on speaker, listening in on tender goodbyes… Words can only fall short here.
I’ll long remember seeing dad’s AA sponsor and dearest friend, Tom, who’s also a minister, visiting at bedside while dad was still conscious… Their thread of easy conversation, reminiscence, and quiet acceptance was heart rendering. Comfortably holding each other’s gaze, the love and gratitude in my father’s eyes was sublime… What brought me to tears, even now, is that I would have loved to have seen that look more often.
That evening, dad slipped beneath the surface, not to speak again, and we began our vigil, as old as time… We attended to him faithfully, giving oral medications on schedule, changing his briefs as needed, all while working together in close quarters… Through sharing such an intimate experience, we discovered one of hospice’s lesser known gifts, the time-honored and enduring value of family caregiving.
The hospice team was available by phone and checked in with us, but clearly understood how fortunate Tell was to have both a hospice RN and hospice chaplain ‘in house.’ To be honest, I’m not sure how other families, with considerably less experience, even manage. It’s a lot to carry. There’s just no easy way.
We knew that dad was actively dying, and a quiet reverence filled the room. We each came and went, resting and eating as need be, while finding the balance between comforting one other, and respecting each other’s privacy. In the still of the night, as the time between his breaths lengthened, we quietly gathered, and stood in awe as Tell slipped away.
Time seemed to stand still…His lifeless body before us. We held each other with loving tears and quiet prayers. We moved slowly… Eventually we called hospice, knowing a nurse would need to come and pronounce the death. After sunrise, we called the cremation provider who arrived soon after. Before it seemed possible, his body was gone. The room fell quiet and seemed empty. Gradually we cleaned up. I remember sitting there still, stunned by the passage of time.
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‘Safe Journeys, until next week –
DSW