The Gift of the Final Hours
Jun 26, 2014 04:21PM
● By Cen Cali Life Magazine
The Gift of the Final Hours
by Bob Marcotte
Easily the darkest nights of my soul occurred Memorial Day weekend of 2013 when I had to admit to myself that I could no longer care for my wife, Carole. No matter how heroically she and I fought, I could not keep her in the comfort and dignity she deserved after her torturous, protracted fight against a “cancer of unknown origin.” My wife needed the care only hospice could provide.
Barbara Volker in her Daughters of the American Revolution regalia.
Barbara Volker has provided physical and emotional comfort in similar hushed rooms to countless patients and their families for the last half of her 44-year nursing career. Her intense blue eyes fill with life as she describes her start in hospice.
“The first 20 years of my nursing career were mostly spent working critical care,” Volker says. “I do think that one thing that ultimately pointed me in that direction [of hospice] was the numerous times I spent using extreme measures to save the ‘un-savable.’
“I particularly remember a resuscitation effort on an elderly woman that went on and on. I finally said to her physician, ‘Are you trying to make her live forever?’ To which he replied, ‘If I can.’ Years later, when I started hospice nursing, I found it a great relief to be able to acknowledge that we couldn’t save every life and that there came a time when it was OK to acknowledge that it was time to change the goal from cure to comfort care.”
The horror for Carole and me began on Halloween Day in 2010 when my wife went to the doctor with a backache. We learned soon after that cancer had invaded her sacrum (lower spine). In March 2011, she had it removed and titanium put in its place.
An X-ray of the titanium "construct" that replaced Carole’s sacrum.
It was 54 days from her first surgery until she returned home. Before the surgeries, doctors told us she would be in a wheelchair for the rest of her life. She defied them by walking unaided in spring 2012. This victory was short-lived; in April 2013, the titanium that functioned as a critical part of her spine fractured. I was home that day and heard her scream my name from the bathroom; I carried her to bed. The ensuing hospital stay confirmed our worst fear – she would live out her days in semi-managed pain and bedbound. Her condition was inoperable.
I tried to care for her at home, as I had done before, but I could not. No bed, mattress pad, pillow, air mattress or recliner could provide her with even a reasonable level of comfort. Our home became a collection of wheelchairs, walkers, and recliners as we searched for the combination that would allow her to rest, but to no avail. The painful realization hit me that my wife’s level of care resided far outside my abilities. I contacted hospice.
When I called Hinds Hospice, I did not know what to expect. The same morning I called, a nurse arrived at our house to evaluate my wife’s condition. She was admitted into hospice, and a day later, a hospital bed was delivered with a special air mattress that prevented bedsores. Carole decided to reside in the front room instead of the bedroom so she could be more involved with visitors and life.
Her bed was by a window so she could see outside. Next to her bed were two small wire-mesh, four-drawer cabinets I found at an office supply store, one for her meds and the other for her art supplies. Even with only half the vision remaining in one eye, she was able to create remarkable works of art.
The illuminated letter "C" by Carole Marcotte.
I later learned that this was their typical care and it was not unusual for patients to improve in hospice, as did my wife, but after this scare I wondered: How do hospice workers deal with the constant barrage of mortality they face? Seeing “the end” as inevitable may be a relief from fruitless “extreme measures,” but death is still not a stage of life most people are at ease with.
“Working in the hospice setting is not for everyone,” Volker said. “Probably the question that any hospice nurse gets asked the most often is, ‘How can you do that? Doesn’t it depress you?’ The best answer I can give to that question is that it is all in your perspective. In hospice care, the patient’s death is the expected outcome. The goal becomes to do all that is possible to help the patient and family live their lives as fully and as comfortably as they can. For most of them it means being where they want to be; usually at home with the bed in the middle of the living room so they can be part of life, with their family, where the dog can jump up on the bed and snuggle.
“If the hospice staff is so lucky as to be able to work with the patient and family for a week or more, they usually can get symptoms under control and provide the help the family needs to care for their loved one and be there to answer questions in the middle of the night when needed,” Volker continued. “When those things happen, the peaceful death of the patient is the ultimate goal with a comfortable life until then. That is NOT depressing. That is fulfilling for the hospice staff.”
Our dogs often jumped on my wife’s bed and napped with her. Her physical comfort was almost back to what it was that fateful Halloween, but we still saw signs of disease progression. We both knew the end to this story, but we continued to write as many new chapters as we could. This was still our story.
Our story lasted 1,224 days.
In late February and early March of 2014, Carole stopped eating and drinking. Her mind was fully engaged, but her body was shutting down. I hurriedly contacted Hinds Hospice and they arranged a bed for her in their intimate, six-bed facility. Carole was initially going in for a “respite,” a three-day tune-up of sorts to treat her new symptoms, but she never returned home.
On that morning while waiting for the ambulance to transport her, Carole and I shared the most brutally honest conversation of our lives. She was stoic and strong as usual; I was crying into a towel because my tears would not stop. I told her I was so sorry, but I did not know what to do anymore. I could not help her if she would not eat, drink or take her meds. I told her how profoundly I loved her.
She told me she understood why I had called hospice. She expressed her love for me and said that in our 24 years together, I had never let her down.
In hindsight, I realize that her stoicism stemmed from her understanding of what was actually happening. She was actively dying. Soon after being transported to the facility, she said she was tired and wanted to take a nap. She never woke up. Five days later, she took her final breath while I held her face in my hands.
I consider our last conversation as the epitome of our relationship. As much as I tried to prove my love for her through my caregiving, our last conversation will forever stand out to me as the highest point of all our time together. That morning we welded ourselves together in love, a love that even death cannot separate.
Hinds Hospice deserves much of the credit for this. Their caring for her physical body added months to her life and gave her a sense of dignity that I could not, and they prepared both of us for the inevitable, so much so that we had the conversation of our lives shortly before hers ended.
This gift of the final hours is what I will remember the most of my wife, and I will never forget the compassionate strangers who entered our lives and made that possible.
Bob Marcotte is a musician, photographer, and published author. Bob’s evolution as a writer paralleled his wife’s struggle with cancer. Initially, his blog www.besidesthecancer.org was intended to keep family members on the East Coast informed of Carole’s condition. It quickly developed into a place to document the difficulty of diagnosing her rare cancer and the cutting edge surgery that prolonged her life, and its great cost.
Bob still makes music and pursues his photography (www.marcottephotography.com), but is most dedicated to addressing cancer support groups about the four years he served as his wife’s primary caregiver.