Play & Book Excerpts
The Sudden Caregiver
(Tangible Group)
© 2021 Karen Warner Schueler
Caregiving in the Time of COVID
It seems like only yesterday that my wonderful, funny, scary-smart husband, Joel, left us here to make our way in this crazy world without him. Joel was just shy of sixty-nine when he died in the spring of 2016. His diagnosis had come suddenly. One minute we were mapping out what to see on our first truly carefree vacation and texting photos back home to our kids who were showing sure signs of being happily launched in their own lives. The next minute Joel had terminal cancer. On the day that my husband so suddenly became a cancer patient, I became a sudden caregiver.
Then Came COVID
In late January 2020, I presented my work on caregiving and resilience at a conference in California. I explained that my talk covered the subject of the book I had just spent four years writing. As usually happens, someone raised a hand and asked when the book would be out. In the past, my answer always contained a hedge against the unforeseen. As evidenced by the word “sudden” in this book’s title, I’m no stranger to the unforeseen. At the end of this particular talk, I realized that I no longer had to hedge. I’d met all my milestones, and the book was with my editor. The Sudden Caregiver would be available in just a few months. I told my audience at the Western Positive Psychology Association Conference with certainty that I was on the verge of publication. Or so I thought.
That very evening, I boarded a crowded redeye in Los Angeles for the East coast and home. I noted with some curiosity that the woman behind me was wearing a surgical mask. When the flight attendant asked if she were okay, she said, “It’s this coronavirus thing. I’m not taking any chances.” I’d heard the distant rumblings about a novel coronavirus by then. Like summer thunder, it seemed ominous, but a long way off. The threat of a storm, but not the storm itself. I was pretty sure that woman in her mask and I had nothing to worry about.
A short month later, the world as we knew it began to shut down, and then it simply stopped. You know what happened next: sheltering in place, home schooling, and scarcity: of personal protective equipment, ventilators, reliable information, and toilet paper. We experienced the ascendency of social distancing, daily press conferences, and video conferencing. Now, moms and dads bounce babies on their knees during conference calls, trading off childcare while we’re all learning how to work from home.
No place on the globe is virus-free, and the wait for a vaccine will be too long for a return to anything resembling normal anytime soon. In my family these past few months, we held an online birthday party. We attended an online funeral on Zoom. My eighty-six-year-old mother has learned to FaceTime from her senior residence. Politicians are gambling on how and when to open up the economy and our schools.
I did a deep dive into what the experts would advise caregivers to do, since COVID-19 had sparked a global and personal crisis on every conceivable front. I read the research, newsletters, and tip sheets provided for caregivers. I sat in on webinars so that I could listen to reliable, caring authorities talk about the impact of COVID-19 on the caregiving population. As always, I talked to caregivers themselves.
Intensified Risks and Rising Uncertainty
To be sure, the pandemic’s effects are tough on everyone, caregivers and non-caregivers alike. But, according to one study by the University of Pittsburgh’s National Rehabilitation Research and Training Center on Family Support, the pandemic has intensified the demands of an already complex and demanding role. “Family caregivers reported consistently more negative impacts of COVID-19 compared to those not providing care.” Among these:
● Fear of Getting Coronavirus. Caregivers were more likely than non-caregivers to worry about getting sick from the coronavirus or being denied care due to preexisting conditions. One caregiver surveyed said, “I worry that I’m potentially exposing her, since I am the one who has to go shopping. I do what I can, only shopping every 10 days and wearing gloves and masks when out and showering as soon as I get home. But if she ends up getting it, it’s going to be because of me.” According to another, “He was afraid to go to the doctor’s office for fear of being exposed to the virus. So, he has cancelled cancer treatment.”
● Worse Physical, Mental, and Emotional Health. They reported worse physical, mental, and emotional health both for themselves and for their care-receiver as they navigated the uncertainties of the pandemic. “The fear of accepting help versus doing it alone is stressful. We weigh the risks and needs for our daughter as well as for ourselves. We are both working; and trying to balance care and work is exhausting.”
● Compounding Effects of Isolation. Caregivers expressed concern about the mental and emotional impact that pandemic related life-style adjustments like self-quarantining and staying in have had, not only on their own mental health but that of their care-receiver. All interactions on behalf of the care-receiver have become even more complicated. Said one caregiver, who, with her husband, balances work and caregiving for their teenage son, “I don’t think people truly understand. My situation is mild compared to other people’s situations, but there’s just no voice for us.”
● Issues with Telehealth. Though caregivers appreciate the alternative methods of medical care, they fear that telehealth is not a substitute for face-to-face appointments for physical and mental health and group support. “We (went to) video appointments for most of the doctors. It’s hard to teach a 65-year-old who is not comfortable with technology,” said one caregiver. In addition, with so many other family members sheltering in place at home, privacy for teleconferenced therapy and counseling sessions is compromised, rendering them either less effective, or causing them to be abandoned completely.
On top of this, ongoing worries about finances, food supply, and access to medical care, both for their care-receiver and for themselves, are perceived to be worse than before the pandemic.
Resilience to the Rescue
During the pandemic, caregivers need to adjust their care to deal with the new constraints and worries it imposes. While we find ourselves in unfamiliar terrain, there are some silver linings to the COVID-19 pandemic, even as we are reeling from its indiscriminate spread and devastation.
First among these is our human capacity to choose: resilience over defeat; optimism over pessimism. We can learn to accept the good, even in a relentlessly bad situation. The key to changing the caregiver’s story during the pandemic and beyond is, and has always been, developing an intentional practice of resilience.
Silver Linings
While I’ve already noted some of the drawbacks of caregiving during a global pandemic, there are also silver linings. For example, the perceived drawbacks of telehealth, acknowledged by caregivers to be a poor substitute for face-to-face consultations in some caregiving situations, can be ideal in many cases. Rebecca Kirch, palliative-care advocate and a consultant to the Center to Advance Palliative Care, points to the rapid ascendency of telehealth as a positive. Not every medical inquiry requires in-office care. For caregivers and care-receivers, this reduces the physical wear-and-tear of getting to all those checkups and check-ins with various medical teams. While not a permanent replacement for in-person treatment, telehealth has its place in the constellation of care options not previously available. And, since caregivers are notorious for putting their own doctor appointments at the bottom of the list, they may now more easily consult doctors about their own health.
“Telehealth is the genie out of the bottle that we can’t get back in,” says Kirch. “Technology is now part of our scaffolding of care.” Asked what keeps her up at night, Kirch answered instead that what helps her sleep is the human instinct to honor what matters most. She said, “We thank the person at the grocery store for being there so that we can eat. What I’ve seen is grace, community, and an abundance of gratitude.”
Dr. Ai-Jen Poo, director of the National Domestic Worker’s Alliance and a champion of financial support for all caregivers, echoes this sentiment. In a webinar sponsored by the Aspen Institute discussing the pandemic and caregiving, she was asked what gave her hope in the time of COVID-19. She replied, “That we are, in fact, a caring country. I have evidence.” She said she’s seen first-hand how much we want to support one another during a time of terrible uncertainty. “This says something powerful about who we are. Listen for it, and you can hear it everywhere. We have to remind each other of just how caring a people we really are.”
a people we really are.”
It seems like only yesterday that my wonderful, funny, scary-smart husband, Joel, left us here to make our way in this crazy world without him. Joel was just shy of sixty-nine when he died in the spring of 2016. His diagnosis had come suddenly. One minute we were mapping out what to see on our first truly carefree vacation and texting photos back home to our kids who were showing sure signs of being happily launched in their own lives. The next minute Joel had terminal cancer. On the day that my husband so suddenly became a cancer patient, I became a sudden caregiver.
Then Came COVID
In late January 2020, I presented my work on caregiving and resilience at a conference in California. I explained that my talk covered the subject of the book I had just spent four years writing. As usually happens, someone raised a hand and asked when the book would be out. In the past, my answer always contained a hedge against the unforeseen. As evidenced by the word “sudden” in this book’s title, I’m no stranger to the unforeseen. At the end of this particular talk, I realized that I no longer had to hedge. I’d met all my milestones, and the book was with my editor. The Sudden Caregiver would be available in just a few months. I told my audience at the Western Positive Psychology Association Conference with certainty that I was on the verge of publication. Or so I thought.
That very evening, I boarded a crowded redeye in Los Angeles for the East coast and home. I noted with some curiosity that the woman behind me was wearing a surgical mask. When the flight attendant asked if she were okay, she said, “It’s this coronavirus thing. I’m not taking any chances.” I’d heard the distant rumblings about a novel coronavirus by then. Like summer thunder, it seemed ominous, but a long way off. The threat of a storm, but not the storm itself. I was pretty sure that woman in her mask and I had nothing to worry about.
A short month later, the world as we knew it began to shut down, and then it simply stopped. You know what happened next: sheltering in place, home schooling, and scarcity: of personal protective equipment, ventilators, reliable information, and toilet paper. We experienced the ascendency of social distancing, daily press conferences, and video conferencing. Now, moms and dads bounce babies on their knees during conference calls, trading off childcare while we’re all learning how to work from home.
No place on the globe is virus-free, and the wait for a vaccine will be too long for a return to anything resembling normal anytime soon. In my family these past few months, we held an online birthday party. We attended an online funeral on Zoom. My eighty-six-year-old mother has learned to FaceTime from her senior residence. Politicians are gambling on how and when to open up the economy and our schools.
I did a deep dive into what the experts would advise caregivers to do, since COVID-19 had sparked a global and personal crisis on every conceivable front. I read the research, newsletters, and tip sheets provided for caregivers. I sat in on webinars so that I could listen to reliable, caring authorities talk about the impact of COVID-19 on the caregiving population. As always, I talked to caregivers themselves.
Intensified Risks and Rising Uncertainty
To be sure, the pandemic’s effects are tough on everyone, caregivers and non-caregivers alike. But, according to one study by the University of Pittsburgh’s National Rehabilitation Research and Training Center on Family Support, the pandemic has intensified the demands of an already complex and demanding role. “Family caregivers reported consistently more negative impacts of COVID-19 compared to those not providing care.” Among these:
● Fear of Getting Coronavirus. Caregivers were more likely than non-caregivers to worry about getting sick from the coronavirus or being denied care due to preexisting conditions. One caregiver surveyed said, “I worry that I’m potentially exposing her, since I am the one who has to go shopping. I do what I can, only shopping every 10 days and wearing gloves and masks when out and showering as soon as I get home. But if she ends up getting it, it’s going to be because of me.” According to another, “He was afraid to go to the doctor’s office for fear of being exposed to the virus. So, he has cancelled cancer treatment.”
● Worse Physical, Mental, and Emotional Health. They reported worse physical, mental, and emotional health both for themselves and for their care-receiver as they navigated the uncertainties of the pandemic. “The fear of accepting help versus doing it alone is stressful. We weigh the risks and needs for our daughter as well as for ourselves. We are both working; and trying to balance care and work is exhausting.”
● Compounding Effects of Isolation. Caregivers expressed concern about the mental and emotional impact that pandemic related life-style adjustments like self-quarantining and staying in have had, not only on their own mental health but that of their care-receiver. All interactions on behalf of the care-receiver have become even more complicated. Said one caregiver, who, with her husband, balances work and caregiving for their teenage son, “I don’t think people truly understand. My situation is mild compared to other people’s situations, but there’s just no voice for us.”
● Issues with Telehealth. Though caregivers appreciate the alternative methods of medical care, they fear that telehealth is not a substitute for face-to-face appointments for physical and mental health and group support. “We (went to) video appointments for most of the doctors. It’s hard to teach a 65-year-old who is not comfortable with technology,” said one caregiver. In addition, with so many other family members sheltering in place at home, privacy for teleconferenced therapy and counseling sessions is compromised, rendering them either less effective, or causing them to be abandoned completely.
On top of this, ongoing worries about finances, food supply, and access to medical care, both for their care-receiver and for themselves, are perceived to be worse than before the pandemic.
Resilience to the Rescue
During the pandemic, caregivers need to adjust their care to deal with the new constraints and worries it imposes. While we find ourselves in unfamiliar terrain, there are some silver linings to the COVID-19 pandemic, even as we are reeling from its indiscriminate spread and devastation.
First among these is our human capacity to choose: resilience over defeat; optimism over pessimism. We can learn to accept the good, even in a relentlessly bad situation. The key to changing the caregiver’s story during the pandemic and beyond is, and has always been, developing an intentional practice of resilience.
Silver Linings
While I’ve already noted some of the drawbacks of caregiving during a global pandemic, there are also silver linings. For example, the perceived drawbacks of telehealth, acknowledged by caregivers to be a poor substitute for face-to-face consultations in some caregiving situations, can be ideal in many cases. Rebecca Kirch, palliative-care advocate and a consultant to the Center to Advance Palliative Care, points to the rapid ascendency of telehealth as a positive. Not every medical inquiry requires in-office care. For caregivers and care-receivers, this reduces the physical wear-and-tear of getting to all those checkups and check-ins with various medical teams. While not a permanent replacement for in-person treatment, telehealth has its place in the constellation of care options not previously available. And, since caregivers are notorious for putting their own doctor appointments at the bottom of the list, they may now more easily consult doctors about their own health.
“Telehealth is the genie out of the bottle that we can’t get back in,” says Kirch. “Technology is now part of our scaffolding of care.” Asked what keeps her up at night, Kirch answered instead that what helps her sleep is the human instinct to honor what matters most. She said, “We thank the person at the grocery store for being there so that we can eat. What I’ve seen is grace, community, and an abundance of gratitude.”
Dr. Ai-Jen Poo, director of the National Domestic Worker’s Alliance and a champion of financial support for all caregivers, echoes this sentiment. In a webinar sponsored by the Aspen Institute discussing the pandemic and caregiving, she was asked what gave her hope in the time of COVID-19. She replied, “That we are, in fact, a caring country. I have evidence.” She said she’s seen first-hand how much we want to support one another during a time of terrible uncertainty. “This says something powerful about who we are. Listen for it, and you can hear it everywhere. We have to remind each other of just how caring a people we really are.”
a people we really are.”
Photo Credit: Bader Howar
|
Karen Warner Schueler, MAPP, is an author, executive coach and president of Tangible Group, a coaching and consulting firm which focuses on leadership development and caregiver well-being. She received her master’s degree in Applied Positive Psychology from the University of Pennsylvania.
"On the day I became a sudden caregiver, I was a wife, a mom, a consultant and business owner, a coach, a runner, a friend, and a consumer of too much Starbucks coffee. I was not a caregiver. Until I was. On that day when my late husband, was diagnosed out of the blue with stage IV cancer, I certainly had no idea that I had instantaneously joined a silent army of informal, unpaid family caregivers around the world who had also been pressed into sudden service. I felt completely at sea with the realities of caregiving." ~ Karen Warner Schueler |
