A Circle of Caring

My mother died in my dining room during the pandemic. Three weeks prior, the 2021 ice storm devastated Oregon’s Willamette Valley and cut power to our home and her electric hospital bed. Yet, this is not a sad story, but one of gratitude. Although Mom, Patty, was unable to provide her own basic care in her final days, she had once been a beloved caregiver: to parents, children and grandchildren, students and friends. While moments of each of my days after her death echo the loss of this life companion, I too exude compassion for others on this journey, and the challenges we face in our accepted system of care. I am grateful and fortunate to have participated in my mom’s final earthly years, months and moments. These stories replay in my memory and emerge in my writing. And in it all, my gratitude extends to caregivers who radiate their care into our communities, and whose well-being and successes need to be better fertilized with improved opportunities, respect and working conditions.

Patty died five days after she stopped eating and drinking, surrounded by family. After she gasped her last lungful of sweet air, we watched her skin take on the gray pallor of death, and bathed her face with our salty tears. Our tears carried a complicated mix of relief, sorrow and appreciation: she who brought us into this world, cared for us and stayed so long. If our mom were of a different religion or ethnicity, her body might have been lovingly bathed by us, anointed with herbs or oil, mourned for several days, set on a pyre, or dressed in her finest outfit. And had she died differently she might have been alone, or to have her final kiss be from a special ICU nurse or facility caregiver. Our mom was fortunate. And I was the luckiest of all, to have had the opportunity to care for her in her last moments and days and months on this planet, reading stories, singing songs, and caring for her: administering morphine, offering water and calling hospice for reassurance. Even in Mom’s last weeks she was able to admire the rare warmth of the sun on an icy winter day, the beauty of purple irises shared by a friend, and music from favorite old musicals.

Shortly after my dad died, Patty was fortunate to be able to move from their rented apartment into an assisted living facility. Others may prefer to stay in their home but Patty chose not to live alone, worried as she was about diminishing vision and memory, but also wanting to maintain some independence. She was privileged to have funds to live as she chose in these final years. I am grateful that my work still allowed me the scheduling and energy to be an active caregiver and participant in this life Mom had: to know her friends and caregivers, and seize opportunities to enjoy life’s still abundant moments of joy together. I received as much joy as I delivered by hosting “Armchair Travels” and book chats to Mom and the residents, our friends. I hung around so much that some residents thought I was an employee, while employees trusted me as a confidant.

Toward the end of Mom’s time in assisted living, one evening the staff neglected to transport her to dinner. She was in a wheelchair following recent hip surgery and told me, when I unexpectedly showed up after work, that she was being punished for making a mistake, though she didn’t know what she had done wrong. I was angry at an incident that caused her to blame herself, already she frequently apologized for her declining memory. I wheeled her to my car to pick up a late dinner when a caregiver jogged toward me crying. “I’m so sorry but I couldn’t get there. There’s just two of us tonight,” she said, her cheeks wet with tears. This young woman my daughter’s age, responsible for too much and coming up short. My anger evaporated as I reminded myself that the fault for lack of care rarely rests with caregivers, struggling to complete too many duties with little control over scheduling.

I mourn for our seniors who lack caring connections while I worry for caregivers who attempt to provide what isn’t otherwise available to those in need. I have overseen caregiving provided to Mom throughout her last years, attempting to support organizations with the best reputations. And yet still, I know many are not providing their workforce with the care, respect, wages and benefits deserved: assisted living and in-home facilities, rehab residency, privately contracted. During her final seven years of life, Patty adored her caregivers, several remaining close family friends, mourning as much as family at her memorial service. Rarely is it that caregivers don’t measure up, but instead, our systems fail. We have inflated the intended mission of many assisted living facilities, often charging concierge-style payments for more services, but often requiring the same caregivers to do more with less. This has created often unreasonable caregiver expectations especially aggravated by pandemic-accelerated staffing shortages: the hours too many, the needs too great, the respect and appreciation too little.

We need to adjust our system to value our caregivers on par with other prized assets in our lives: to systematically elevate the caregiving profession. Resources for caregivers teem with self-care reminders. Often, though, our professional caregivers are not given the pay, respect, support or time to maintain their own care. In other cases, families take on full caregiving responsibilities while giving up financial and emotional resources to do so. I am hopeful that we can learn from successful examples of universal care models elsewhere to provide care to elderly and those in need, whether it be in senior living facilities, multi-generational housing or independent living.

So many of my dearest elderly friends, like Mom, have recently died. They lived long lives, some of their deaths accelerated by COVID, but not others. I moved Patty home during the pandemic because of in-person visiting restrictions in the care home she was living in. I mourned more during those days when I couldn’t see her than I did following her death. I understood the COVID “whys” but hated the consequences. Communicating with loved ones who cannot see, hear or remember as well as others, while adhering to COVID restrictions is devastating, and it is only because of trusted caregivers than some of our seniors found joy in their final days. When our mom died, over four months after moving into my home, I mourned and grieved. Yet, above all, I was grateful. For many of us, the gift of having been there during the weeks and months and years helps us grieve when our loved ones leave us. We experience the good and the bad, the easy and difficult, and we are available to listen to stories that can only travel between generations when offered the opportunity to be told. For in the end, it is those we know and love who matter the most in this experience we call life, friends and family alike.

Yes, our long-term care system is broken, with glimmers of hope for change coming in small ripples. Not all families can choose to have their loved one in their home but when they do, we need to actively support doing so. Give everyone the privileges I had of flexible work and paid family medical leave to allow the opportunity to care for those we love. We must support palliative and hospice care networks to create opportunities for everyone to know they exist: to provide an end of life experience deserved by both those dying and their caregivers. And let us Care for professional Caregivers to give them the capacity to provide when we cannot.