A Minnesota-based chorus offers inspiration for dementia patients and caregivers. For CNN's Amara Walker and her mother, it's deeply personal.
A dementia caregiver turns to an unconventional method to help her patients
04:00 - Source: CNN

Phyllis L. Fagell, a licensed clinical professional counselor and nationally certified school counselor, is the author of “Middle School Matters” and “Middle School Superpowers.” 

CNN  — 

CNN — At some point, most people will provide care for a loved one, whether their children, spouses or parents — and likely be the recipient of such care themselves.

While those who are wealthy, like comedian Jay Leno, have the money to provide daily care for his wife, Mavis, who has dementia, everyone struggles with the diminished capacity that can come from having another human being rely on you for their well-being.

Mavis and Jay Leno attend a benefit at the Roxy in West Hollywood on February 26, 2020.

A Los Angeles Superior Court judge granted Leno’s request to be appointed conservator of his wife’s estate on Tuesday due to her inability to manager her financial affairs.

Whether it’s in sitcoms, movies or social media, parenting and other kinds of caregiving often is portrayed as thankless, sad and draining work that erodes one’s sense of self. Elissa Strauss wants to change that paradigm. While it can be true,  there’s also much to honor and celebrate in caregiving work.

Author Elissa Strauss

Strauss learned that after her first child was born 11 years ago. She had internalized the idea that her “non-mom self would disintegrate into the sludge of motherhood.” Instead, motherhood made her reconsider her assumptions about all kinds of care. Conversations with a wide variety of caregivers, paid and unpaid, helped her realize she wasn’t alone. There is a lot to the caregiving story, a rich and transformative experience for many, that goes unsaid.

“When I became a parent, I knew I’d love it — and hate it at times – but I discovered that it was as rich intellectually, philosophically, spiritually and psychologically as anything I’d ever done,” said Strauss, author of the new book, “When You Care, The Unexpected Magic of Caring for Others.”

CNN spoke to Strauss about our cultural obsession  with independence, and how we can embrace the critical role caretaking can play in our lives and communities.

This conversation had been edited  and condensed for clarity.

CNN: Why write a book about caregiving, and why write it now?

Elissa Strauss: I had spent a decade covering policy around paid leave and how the United States failed parents policy-wise, and it got to a point where I felt there’s something deeper going on. How do we culturally fail to acknowledge the enormity of caregiving, whether as a parent or for a sick relative or older relative or friend?

It was that frustration twinned with having my first child during the age of “Lean In.” There was one version of ambition, and motherhood wasn’t a big part of it.

CNN: How do you define caregiving? 

Strauss: Caregiving is an ongoing dependent relationship in which one human is dependent on another human, if not to thrive than at least to survive.

Care often is presented as either sweet and simple – a fairy tale – or a horrible burden that squeezes us of our vitality. When in fact there’s an incredibly fertile messy middle in which care challenges us, but also gives us opportunities to grow and is central to the functioning of society.

CNN: How we have gotten care wrong?

Strauss: One of the things I learned while researching this book was that I had completely misunderstood Charles Darwin. Survival of the most sympathetic is just as important as survival of the fittest, but which one did we learn?

Darwin—a devoted and loving father—believed that without what he called “parental affection and sympathy,’ humanity wouldn’t survive. As a new mom, I wish I had understood how important care was to the human story, so big, so important, in fact, that humans didn’t evolve to do it on their own. And yet we are very isolated now, more isolated than ever—and isolation does not work for caregivers.

CNN: How can caregivers preserve their own sense of self while caring for others?

Strauss: It’s one of the central struggles as a human to figure out how much of yourself to give and how much to protect. I protect a lot of myself. I wrote a book; I work; if I need to travel for a few days, I don’t beat myself up for leaving my kids.

I’m never shy with my kids. I tell them I’m not available sometimes. I say, “I love you, but I just need to read in bed.” We need to know when to give and when to recharge.

The reason I can do this without guilt is because when you really see the enormous value care brings to both individuals and society overall, it’s just like “yeah, this is a huge job! Of course I need to take breaks!” My book walks you through just how huge it is.

Unpaid care work, including parenting and other types of care, in the United States would represent around 14.7% of the GDP—around $3 trillion today—if it were counted, according to the International Labor Organization. This is bigger than the retail sector and yet so many caregivers are made to feel as though our efforts are small–and not worthy of support.

In recent decades, philosophers and theologians have begun to dig into just how transformative care is for our minds and souls. It is challenging and takes us straight to the heart of what it means to be human.

CNN: What would you tell caregivers who have a hard time asking for help?


Strauss: I want people to realize that care is often a heroic endeavor, even in ordinary circumstances, and the thought that anyone could handle it all on their own is absolutely ridiculous.

To get your feet wet, start small. Ask for an hour. Ask for a meal. What you will find, and there’s research on this, people feel good when you ask them for help. When we don’t ask for help, we’re actually prohibiting the creation of a social fabric to be woven together. When I’ve been asked for help, it’s opened me up to asking that person for help, too.

Also, help doesn’t have to be practical; it can be someone listening to your pain and struggle.

Male specific advice: call yourself a caregiver. It sounds so small, but a lot of men are reluctant to do this, and if they don’t have the title, they feel guilty asking for help or reluctant to talk about their experience at all, and it can be lonely for them.

CNN: What are some of the bigger challenges for caregivers? 

Strauss: Whether someone is caring for an adult parent, a sick spouse or a child, caregivers are failed across the board. In this country, way too many people have to pick between going broke and caring for a loved one. At minimum we need a universal paid leave policy in this country. We need affordable and high-quality childcare and eldercare. We need workplaces to be more sensitive to care responsibilities.

For instance, last-minute scheduling is a common complaint at big box stores and food chains. If you’re a parent or have to care for an adult parent with dementia, how can you ensure they’re cared for while you’re working if you get your schedule at the last minute?

CNN: How could we as individuals support caregivers more?

Strauss: Praise them! And more importantly, be curious about their experience with care. If someone serves the needy outside the home, then you’re held up as an example in your community, but if you serve the needy inside your own home, which is necessary, nobody pays attention to you. I want parents and caregivers to get the respect they are due, and for people to see both the struggle of their experience as well as the richness of it.

CNN: What have you learned from writing that you wish you had known as a new parent?

Strauss: I think a big part of this book for me is realizing that the hard parts of care are hard but also an opportunity for truly meaningful growth and huge contribution to society. This book is a call to change our mindset around care, to be proud of being caregivers, to understand all the ways it makes us and the world better. Economically, philosophically, spiritually, politically, care is a huge force and yet, historically speaking, we’ve just begun to acknowledge it.

Also, when I dug into research about care’s effect on our health, I discovered that in the right conditions caring for others can be very good for you both physically and psychologically ! Caregiving is now being associated with longer lifespans, lower inflammation and finding one’s life meaningful. It is also associated with lower suicide rates among men. Unfortunately, we need to keep fighting for these right conditions.

If people had talked about care that way before I was a parent, I would have gone into it with a whole different attitude. I would have understood that I was doing something big and rad and powerful and would have never worried that becoming a mom would make me the boring person at the dinner party.

Sign up for CNN’s Stress, But Less newsletter. Our six-part mindfulness guide will inform and inspire you to reduce stress while learning how to harness it.