I occasionally drive a road that takes me by where a patient of mine once lived. As I round the bend and come upon a small white house, I think of a family and a special kind of caregiving I found inside that place.
While I was working as a home health nurse, family members were often partners in caring for my patients. Families coped with the particular health challenges they faced in their own ways, as best they could, as best they knew how. Some situations were not so difficult for them, perhaps a course of IV antibiotic therapy for osteomyelitis, or a posthospital assessment of medication compliance and mobility issues; others were more daunting, such as the last stages of an incurable disease.
Helen, who lived in the white house I occasionally pass by, was a widow, in her 70s when I met her. Vibrant and independent, she had lived alone after her husband died. She was diagnosed with pancreatic cancer after finally seeing her doctor for a persistent cough. Her cancer was deemed untreatable—it was already advanced and had spread to other body organs, including her lungs. Given only a few weeks to live, she wanted to live out her life in her own home. Her children decided without hesitation to make that happen. She was referred to our home health agency and I was part of the team assigned to her care.
By the time of my first visit with Helen, her older daughter had moved in with her and become her primary caregiver; soon after, her son and younger daughter alternated in staying with and helping care for her. Her older daughter took a leave of absence from her job; her son traveled back and forth from his home and family several hours away, as did her younger daughter. The timing of Helen's illness was not convenient—the march of family responsibilities carried on in the lives of her children, yet they recognized her final weeks and days as a sacred part of her life, and of their own. Though none were health care professionals, they embraced our team's teachings and provided exceptional patient care.
They placed a comfortable armchair, and soon afterward her hospital bed, by a big bay window in the living room, and hung a bird feeder busy with cardinals and chickadees just outside. They pulled open wide the curtains to bring in the sunlight, and they brought in colorful bouquets; they encouraged her spunky little terrier to snuggle at her side; they reminisced with her as they paged through family scrapbooks and photo albums, and read aloud to her from her favorite novels and poetry. They played her favorite music—I once heard them singing along to a Traveling Wilburys album, loud and full of jest. They prepared her favorite foods, even though she might only manage a few bites—I once walked in to the spicy aroma of just-baked gingerbread. And as her death became imminent, more family members arrived from out of town; and with the comings and goings, the eating and talking, the warmth and love inside that house grew rich and palpable.
It was the profound sense of joy that infused her family's caregiving and their determination to keep all gloominess at bay that touched me most. There was something inherently sad in their heartfelt efforts—something like sand castles soon to be washed away—yet sadness did not fill the home. I always looked forward to my visits there, where I would find a cheery glow no matter how the day had unfolded, no matter what spills or mishaps may have taken place. I became oddly envious of this family and—despite their distress—their nest of love and nourishment. I realized such is what I would want, would hope for, for my own family, my loved ones, myself.
As for Helen, she appeared to thrive, in the best manner a dying person can, during her final weeks and days. She spoke of gratitude and contentment and of her acceptance of death. I thought her blessed to end her life immersed in such surroundings.
Helen's family showed me that it's okay to mingle joy—brightly colored flowers and laughter-filled conversation—with the sanctity of grieving, that it's not inappropriate to celebrate life instead of languishing in grief. Though they thanked me for my work, I'm grateful to them for letting me share their journey and for gifting me a vision of what end-of-life care can be.
I recall the last time I visited there, just the evening before Helen died. As I left the driveway I looked back—and seeing golden lamplight through the front window, I felt again the glow I always found inside there. And I knew that a bit of it would stay in my heart.