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How COVID-19 Has Sparked Family Caregiving Conversations

Photo: Courtesy of Candy Chung

In 2005, the aftermath of Hurricane Katrina motivated installation artist Candy Chung to create what became a worldwide phenomenon. Her desire was to help her city of New Orleans heal from the tragic loss of life, so she installed huge blackboards along devastated city streets and put out chalk with the self-reflective open-ended sentence: “Before I Die …”  The provocative exhibits promoted a sense of shared grief, consolation, celebration, and being alone together. 

Five thousand installations in 75 countries and 25 languages later, the answers provided clues across generations, cultures, religions, and socioeconomic statuses about what mattered to people worldwide: love, well-being, family, helping others. 

Chung wrote on her website, “It became a monument for the anxious and hopeful.”

As the world struggles with the continued threat of the coronavirus pandemic, these themes, along with the unforeseen health vulnerabilities we all can face, are creating new conversations in 2020. 

Talking long-term care

Genworth Financial’s COVID-19 Consumer Sentiment Survey conducted in May found that 7 in 10 U.S. adults had changed their minds about avoiding difficult discussions about long-term care. Watching an older population become the most at-risk for the virus prompted families to have heartfelt conversations.  

Both the older generations and the younger ones — who will most likely become caregivers to parents, grandparents, and other older loved ones — engaged in dialogues about long-term care. In fact, 32 percent of those surveyed said they want to ensure they are financially prepared for long-term-care — for themselves and older family members. A previous study published in the Journal of Financial Service Professionals found 60 percent of family caregivers want expert financial advice on navigating the increasing costs of aging and managing chronic health issues.

COVID-19 has become a focusing event for our society in terms of long-term care and end-of-life planning. Prior to the pandemic, a 2017 Health Affairs article reported on a study that found only one-third of older Americans have a healthcare directive or living will. The study noted that while doctors already recommend that everyone write an advance care directive, only 33 percent of the healthy and only 38 percent of the seriously ill had done so. 

The coronavirus has created a daily news cycle about death, especially affecting older loved ones, helping families overcome taboos and discomfort to best prepare to care for each other no matter what challenges the future holds.

Living better

Living in an era of shutdowns and sheltering in place has also helped caregivers and others reflect on quality of life. A few years ago, Bronnie Ware, a hospice nurse, realized there were similarities in the top five regrets her patients expressed near death. She compiled these regrets into her book “The Top 5 Regrets of the Dying — A Life Transformed by the Dearly Departing.” These reflections are similar to the thoughts many have had since the global coronavirus pandemic began: 

  1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
  2. I wish I hadn’t worked so hard.
  3. I wish I’d had the courage to express my feelings.
  4. I wish I had stayed in touch with my friends.
  5. I wish that I had let myself be happier.

The difference is that the coronavirus has given us the gift of time to ensure these are not regrets we will have.

Starting the conversation

My book “A Cast of Caregivers” offers an entire chapter on CARE Conversations on how families can begin and navigate these important discussions. Following are three other valuable resources to help families have conversations about long-term care and end-of-life planning:

  1. “On Being Mortal: Medicine and What Matters In the End” – wonderful, award-winning book by noted surgeon Atul Gwande on how to deal with death and dying
  2. The Conversation Project – a nonprofit public engagement initiative with helpful tools and conversation guides for long-term care and end-of-life planning
  3. The 5 Wishes document – translated into 28 languages and Braille, more than 30 million adults have created this non-threatening, life-affirming advanced directive that promotes aging with dignity.
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