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“Nowhere to Turn”: COVID-19 and Caregiver Stress

     

“I need help, and I have nowhere to turn.” I find this a frighteningly common refrain among my patients who are also caregivers for people with dementia, autism, or children with a panoply of mental health conditions who need consistency and structure. As an individual psychiatrist, there seems to be no option, and I simply listen.

Most poignantly, I hear the frustration on the other end of the telephone several times a week from my own mother. The former fire chief she once married is often disoriented and panics and wanders looking for her when she is not in the same room.

Clearly, all caregivers are encountering difficulties—including parents of typical children who need to both work and parent their children through online learning and increased anxiety. For both personal and professional reasons, however, I find the situation of our older adult caregivers to be among the most fraught. Available data suggests that older adults are the most vulnerable to serious illness and hospitalization from COVID-19.1 Unlike children and adolescents, they are often uncomfortable with technology, or have vision, hearing or cognitive impairments that make virtual sessions unworkable. Friends who might otherwise be available to support them are also older and at risk, and known infection is common in senior centers and assisted living facilities.

My own family has encountered all of these challenges and come to the simple conclusion that for now, there are few options. Our in-home care application has been delayed by the pandemic. My mother will continue to provide care for my stepfather as long as possible, and if she becomes ill, I will leave my own family and patients behind for some indefinite period and take care of both of them.

We must do better. Recent projections make it clear that social distancing will likely need to continue for the foreseeable future,2 so this is not just an immediate problem. We in psychiatry have spent enormous time and effort converting our practices to telemedicine, rescheduling in-person meetings, creating redeployment schedules and virtual curricula—all necessary to respond to the immediate crisis.

As the pandemic simmers into a fact of daily life, we need to shift focus to reworking the many vulnerabilities in our systems of care that this pandemic has exposed. Our children and adults who need care may not be able to advocate for themselves, and their caregivers are too exhausted.

One of the truly heartwarming experiences that has come with this pandemic is the creativity and generosity that I have witnessed from my own colleagues in programs across the country to share quarantine curricula, self-care strategies, and generally band together for support. I also commend the work of places like the UCSF Memory and Aging Center for caregiver resources. Our families have parented us, supported us, and mentored us throughout our lifetimes. My hope is that our collective creative spirit will forge a solution worthy of their efforts on our behalf.

By
Michelle Hume, M.D., Ph.D.
Chief Resident, University of Wisconsin-Madison
Vice Chair, APA/APAF Leadership Fellows

References

  1. Garg S,  Kim L, Whitaker M, O'Halloran A, Cummings C, Holstein R, Prill M, Chai SJ, Kirley PD, Alden NB, Kawasaki B, Yousey-Hindes K, Niccolai L, Anderson EJ, Openo KP, Weigel A, Monroe ML, Ryan P, Henderson J, Kim S, Como-Sabetti K, Lynfield R, Sosin D, Torres S, Muse A, Bennett NM, Billing L, Sutton M, West N, Schaffner W, Talbot HK, Aquino C, George A, Budd A, Brammer L, Langley G, Hall AJ, Fry A. Centers for Disease Control and Prevention. Hospitalization Rates and Characteristics of Patients Hospitalized with Laboratory-Confirmed Coronavirus Disease 2019 - COVID-NET, 14 States, March 1-30, 2020. MMWR Morbidity Mortality Weekly Rep. 2020 Apr 17;69(15):458-464.
  2. Kissler SM,  Tedijanto C, Goldstein E, Grad YH, Lipsitch M. Projecting the transmission dynamics of SARS-CoV-2 through the postpandemic period. Science. 2020 Apr 14.

     

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