The Great Escape—A Physician Confronts Family Caregiving During the COVID-19 Pandemic | Humanities | JAMA Neurology | JAMA Network
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On the Brain
May 10, 2021

The Great Escape—A Physician Confronts Family Caregiving During the COVID-19 Pandemic

Author Affiliations
  • 1Stony Brook University, Stony Brook, New York
JAMA Neurol. 2021;78(7):791-792. doi:10.1001/jamaneurol.2021.1170

My mother died as the COVID-19 pandemic raced across the nation with wildfire ferocity.

At age 92 years, she was frail and living with advancing dementia. Until the pandemic took hold, upending my mother’s life, I was the first-response daughter who lived closest to her 2-bedroom apartment. With New York on the verge of lockdown, we played out our options—uprooting Mom from her native New York vs our fear of her remaining in place and contracting COVID-19. Our family ultimately decided to move Mom near my middle sister in New Hampshire, a state relatively untouched by COVID-19. Our hope was to avoid caregiving chaos during a pandemic and to protect our mother from contracting the virus.

My mother did not die of COVID-19. She died of complications of dementia after falling and breaking a bone in her neck 3 months before her death. The fall occurred in a New Hampshire hotel room near the new apartment my sister and I were frantically preparing for her. We had managed to recruit one of my mother’s long-time home health aides, Earlene, to make the trip up north. Earlene and I packed my mother into the car and sped away from New York, convincing ourselves that we were escaping a deadly new plague.

The hotel itself was a familiar setting, the spot out-of-town relatives always stayed for Thanksgiving. We thought that this would be the right place for a temporary landing. However, this time, the place was almost empty, the restaurant closed, and the atmosphere tense. This weird scenario confused my mother. She could not grasp why she was being forced to take all her meals in the hotel room, why we were not going on shopping trips in the small town or visiting my sister’s house. Having riled her up with too many no’s, she became less cooperative and more confused. It became hard for Earlene to convince her to wear a mask or stay put in a chair while her walker was unfolded. I felt guilty of being a party to what my mother, despite her dementia, described as a kidnapping. I wondered if this sudden uprooting was a mistake.

I am the youngest of 3 and a palliative care physician. For my family, this meant I was the natural pick to be Mom’s health care champion. Like many health care clinicians, I welcomed the opportunity to use my professional know-how to help my mother navigate her advancing dementia and frailty. However, the decision to lead the family health alliance brought with it complications. I was ambivalent about being at the epicenter of medical decision-making. My daughter-physician superpower was that my mother always listened to me. A call to me was leveraged as a threat when my mother’s behavioral complications—a symptom of her worsening dementia—drove her caregivers to the brink. However, in the final act of her life, I dreaded having to apply a stern voice and an “absolutely not” tone. The pandemic has made these encounters trying, especially when used over the phone without the hope of countering with a loving hug. Gone were the moments of just being a daughter.

My palliative care self knew that our situation was lucky. We had each other and finances for home health aides. Unfortunately, the destiny of many patients who face serious illness is becoming too sick, frail, or socially isolated to govern their own health care decision-making. They can rapidly slide into housing, food, and transportation insecurity and social isolation. Health advocacy, especially surrounding end-of-life decision-making, can suddenly fall to families without preparation or the conversations we had. As a palliative care consultant in the hospital, doctoring meant hours-long family meetings attempting to untangle heroic stories of family caregiving. I witnessed families unravel trying to support a loved one through a serious or chronic illness.

The term family caregiving describes a range of care situations, mostly unpaid and primarily delivered by a close family member. The intensity of caregiving maps directly to the deteriorating daily function of the care recipient. Changes in need can literally occur overnight with one major health incident, such as a pneumonia, a fall, or a major hospitalization. One week, a caregiver can be assisting with the basics of daily living for a recipient with moderate functional impairments, and the next week can be in charge of managing the totality of a person’s bodily needs. A recent AARP report highlights the complexities and fragmentation that characterize the family caregiving experience, pointing out that families increasingly perform medical care tasks in the home that, in the past, would have been the purview of licensed professionals.1p37 Such arrangements can result in crisis hospitalizations that conclude with the heartbreaking consequence of a loved one being jettisoned from their home into facility care—the health care system’s de facto solution.

My mother’s caregiver requirements escalated considerably after the fall to include a rigid neck collar that she was forced to endure for 7 weeks. The collar, required to stabilize her cervical spine fracture, greatly complicated her daily life. For one thing, she hated it and could not remember why she had to wear it. Bargaining for its release became her passion. The collar is meant to hold up the chin slightly, which made eating (my mother’s favorite activity) difficult, and she now needed assistance getting food up to her mouth. We froze with fear from episodes of coughing and gagging induced by an increasingly poor swallow reflex resulting from weakened neck and chest muscles. Likewise, showering now took a village—one person to hold her head, collar off, and the other to bathe her.

I had played out my mother’s death many times. The script followed the same scenario: home death, in her bed, surrounded by family. No suffering. According to my family lore, a hospital death would be considered an abject failure. My father had died at home, as did my grandparents and great grandparents. Their good deaths were described to me as rite and ritual. Surely, my palliative care credentials would allow me to fulfill this ancestral edict. So watching the ambulance pull away from the hotel on the day of the fall, I contemplated that she was now a ward of the health system from which we had tried to rescue her. Power stripped, I wept in the hotel parking lot. COVID-19 protocols meant I would not be there to hold my mother’s hand, sit at her bedside, or help her with a sip of water.

Would I ever see her again? I thought.

Our plan to save her had been derailed. This experience, however, is not just mine. It is being repeated ad infinitum, in the aftershocks of the pandemic, by thousands of families across the country. COVID-19 kills people, but it also steals their chance to die governed by their own stories and wishes.

The Biden administration recently released an ambitious blueprint for overhauling the US government’s approach to unpaid and paid caregiving.2 Rightly, the report highlights the tribulations of family caregivers. The Biden administration’s goal to shore up a workforce wholly neglected by our health care system is ambitious but important. The national reckoning about the future of health care, brought on by the COVID-19 pandemic, is a chance to reexamine gaps in federal law surrounding family caregiving, especially the integration of social services and payment for long-term care. It is essential that the federal response to caregiving is informed by the experiences and know-how of frontline unpaid and paid direct-care workers.

The last time I saw my mother was in her new apartment. I had brought her lunch that included her favorite forbidden food, french fries. The lunch date was my last stop before returning to New York after weeks spent helping to stabilize her situation. Once I left New Hampshire, COVID-19 restrictions and rising case rates in New Hampshire would complicate any urgent return. She had been cleared to have the collar removed, and her facial injuries were subsiding. She was back to short stints with her walker. My family became hopeful Mom would settle in and live on. While they saw her progress, I knew that she was weak and had an ineffective cough. She needed oxygen. Two people were required to lift her out of a chair. I left thinking, it would not take much to tip her into a life-ending complication.

Earlene called me the night Mom died. She told me that she could not get my mother off the floor and had called 911. When the paramedics arrived, I mustered my physician calm and, over the phone, turned their attention to the refrigerator, where Mom’s do-not-resuscitate order and medical orders form were taped.

They told me that she was dying. I asked them to please lift her into her bed. I shouted, “I love you,” a daughter once again.

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Article Information

Corresponding Author: Lynn Hallarman, MD, Stony Brook University, HSC Level 16, 101 Nicolls Rd, Stony Brook, NY 11794 (lynn.hallarman@stonybrookmedicine.edu).

Published Online: May 10, 2021. doi:10.1001/jamaneurol.2021.1170

Conflict of Interest Disclosures: Dr Hallarman has received personal fees from Harvard University as the content expert on dementia care for the National Center for Equitable Care for Elders.

Additional Contributions: I thank Earlene and my family for granting permission to publish this information.

References
1.
AARP; National Alliance for Caregiving. Caregiving in the US: 2020 report. Accessed April 6, 2021. https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf
2.
Democratic National Committee. The Biden plan for mobilizing American talent and heart to create a 21st century caregiving and education workforce. Accessed April 6, 2021. https://joebiden.com/caregiving/
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    1 Comment for this article
    The Soul of 'the' Dementia Patient Must Not Be Neglected
    Sandro Tsang, PhD | People's Open Access Education Initiative
    Taking care of patients with dementia is hard. The exhaustion can get the family caretakers to feel that the persons are unfamiliar to them and that they want an escape from the duties. The author is a medical practitioner. The exhaustion of caring for other patients during a pandemic itself must be indescribable. It is remarkable that she strongly believes that the soul of her dementia mother was there. She created a beautiful end by shouting out “I love you.” If all caretakers share the same belief, all dementia patients will definitely receive humanistic care.
    CONFLICT OF INTEREST: None Reported
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