November is National Family Caregivers Month, recognizing those who provide care for elderly loved ones or those with disability or illness. We talked with Jennifer N. Levin (Theta, University of Michigan) about her own experience as a caregiver, her new book about Millennial caregiving and advice for sisters.
What prompted you to start researching and writing about caregiving?
My dad was diagnosed with progressive supranuclear palsy (PSP) when I was 29; it’s a horrible disease (similar to ALS and Parkinson’s) that took a more serious turn when I was 32. In many ways my adult life was just beginning, and suddenly I found myself in this caregiver role. I’m an only child of divorced parents, none of my friends had gone through a similar experience, but I very quickly had to learn the ropes. When there’s no one to model it for you or go through it alongside you, caregiving can be a very isolating experience.
After my father passed away, I read a study revealing over 10 million Millennials (like me) were already caregiving for ill, disabled or elderly family. This floored me: my outlier experience was actually somewhat common. So why had I felt so alone? Why aren’t we talking about it? I decided to write an article sharing the statistic and my personal experience – I wanted to give anyone else going through it someone to relate to. I also wanted to get the conversation going: at that time there wasn’t awareness, dialogue or resources specifically for caregivers my age, no support group of peers – so I decided to start one. I created Caregiver Collective so anyone, anywhere, experiencing caregiving “younger than expected” could find support, share resources and feel less alone. Now we have over 2,000 members.
What has surprised you through your exploration into caregiving?
When I read the first studies revealing that Millennials are caregiving at a younger age, in larger numbers, than ever before, my first thought was: why? Jumping down that rabbit hole unearthed a variety of societal influences that made our generation’s caregiving necessary: changes in the health care system we aged into, global events like September 11th and COVID demanding more of us take on care, generational influences in how our parents raised us, economic influences. In turn, caregiving at a younger age impacts our physical health, mental health, family planning and personal outlooks. I realized these overarching trends differentiate us from previous generations and resources we need have gone overlooked and underserved. The experience of younger caregivers is a testament to who we are now and where we, as a society, are going.
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What was the process to publish your book, Generation Care?
When I began, there was not a lot of dialogue around caregiving – particularly among younger adults – in the media or in conversation. To pitch publishers, I needed to make a real case for why this book was needed: that caregiving at this age is an urgent widespread issue and that I was the right one to tackle it.
Once I signed with my publisher, the process was one of the best professional experiences of my life so far. It began with a ton of research: interviewing experts, conducting case study interviews, poring over academic research and state policies, and continually chasing the “why” to new questions that inevitably popped up. Then I got to work locking down the first draft: an extended period of euphoria and exhaustion, writing anywhere from 6 to 18 hours a day. After each draft I’d turn in the manuscript to my editor, wait for notes, then do it all over again! From signing the contract to turning in my final edit was about 3 years. I was incredibly fortunate to work with an editor who really understood the content and my take on it and also believed wholeheartedly that Generation Care needed to be out in the world.
What has it been like seeing your book out in the world?
So exciting – I worked on the book solo for such a long time, I wondered if people started to think I was making it up! This book is the culmination of a ton of hard work, life experience and, frankly, personal tenacity – it’s incredibly gratifying to have a finished product and to see it living in the wild, driving conversations. I hear from people who say the book’s advice has helped them or they finally feel seen, and that’s really meaningful to me.
What is one thing you’d like a sister to take away from the book?
I wrote Generation Care so that anyone who has taken on family caregiving “younger than expected” knows they are not alone. The ways caregiving impacts you also impacts millions of others; I hope the book brings some of their stories closer so we can begin to recognize the ways we relate, the ways we can support ourselves and each other. Let the book motivate you to open up to the people in your life. No matter what, caregiving is hard, but taking on this role also reveals your character and values – let others in on that.
What is your advice for Alpha Chi Omega sisters in the role of caregiver?
Acknowledge your care role – but don’t overidentify with it. We may be reluctant to identify as “caregivers” (publicly or even to ourselves), but it opens up a world of resources, bridges understanding with others and helps us feel less isolated. But we also risk losing ourselves in it, focusing so much on caregiving we don’t nurture anything else. Caregiving can feel all-consuming and reach its tentacles into every part of our lives. It’s important to maintain your sense of self. Where can you devote some time or attention to who you are beyond this family responsibility? (I know this sounds impossible, so the book provides tips on “how.”) Recognize that taking some time for yourself where you can is not selfish. You deserve to feel whole.
What does being a real, strong woman mean to you?
A woman’s strength is boundless, but inevitably we all have difficult periods when that strength feels tested. This is the importance of Alpha Chi: it’s a home for real strong women – it’s not about any one individual. These women stand beside and up for others in their most vulnerable moments, lift each other in our wins. It begins with each of us having the courage to live in authenticity and share with honesty, then it’s about showing up. When we support and work together in community, we represent the best in all of us.
You can get a 20% discount when purchasing Generation Care in hardcover direct from Hachette Book Group at this link; use code CARE20 at checkout through November 30. You can learn more from Jennifer on Instagram or LinkedIn @JenniferNLevin.