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OPINION

I became a caregiver in my late 20s — and found little support to guide me

My employer offered no voluntary benefits for family caregivers and less than half of the paid leave it offered to new parents. The best professional advice I found was helpful, but expensive.

Globe staff illustration/Shutterstock
Globe Staff/Adobe

I became a family caregiver the way Ernest Hemingway described how you go bankrupt: gradually, then suddenly.

My mother — a reliably energetic and independent person who had for years run a thriving legal practice — had changed. She sounded agitated and overwhelmed. She stopped wearing makeup or seeing friends. She was suddenly disorganized, asking me the same questions over and over and writing my answers down on sticky notes.

I moved home from New York City to San Francisco to support her — being careful to protect my job in the high-growth technology industry, nervous about the impact that I knew family caregiving roles can have on women’s careers. Right away, I discovered that her daily life was much more chaotic than it seemed from afar: There were errands that needed to be run, clothes that needed to be organized, and bills that needed to be paid. These tasks — and dozens of others that I’d soon learn were called “activities of daily living” — became my responsibilities.

Eventually, I realized that what I had suspected was a mild depression was actually dementia. I added “care coordination” tasks to my list of responsibilities, including researching diagnosis and treatment options, organizing her insurance information, and securing a spot on new-patient waiting lists at several neurology clinics. My mother was finally diagnosed with early-onset Alzheimer’s disease a few months after she turned 65.

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I became a caregiver in my late 20s — around the same age many women become mothers. And so I expected to receive at least some of the support that many of my friends and colleagues did when they took on their new role as a parent. I expected family and friends to rush in, eager to pitch in however they could. I expected my employer to offer voluntary benefits like care navigation services and several months of paid time off. I expected to find dozens of books, podcasts, and experts who could answer my complex medical, legal, financial, and emotional questions. Most of all, I expected insurance — either my mother’s or mine — to cover most of the cost of her care.

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Instead, I learned that family caregivers suffer from many of the same gaps in our caregiving infrastructure that parents do — and get even less support.

Friends and family felt uncomfortable talking about caregiving and its taboo themes of death and money. My employer offered no voluntary benefits for family caregivers and less than half of the paid leave it offered to new parents. The best professional advice I found from estate-law attorneys and care managers was helpful, but it was also expensive — and Google searches turned up few expert voices I could rely on in the way my parent-friends relied on Emily Osteror Taking Cara Babies. Lastly, Medicare hasn’t covered even $1 of the cost of my mother’s four years at a memory care senior living facility in Phoenix, which costs over $80,000 per year.

Most importantly, I learned that even though I felt lonely, I wasn’t alone. I’m only one of more than 40 million Americans — over a quarter of whom are millennials like me — who spend an average of $7,000 per year out of pocket providing unpaid care for an adult like their aging parent or spouse.

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Over time, I’ve shared my caregiving story with hundreds of others in person and over the Internet. Many of them have confided that they, too, are surprised by how little support they’ve been offered by their communities, their employers, and their governments. The same questions come up among family caregivers: Where are the trusted products and services that offer holistic support for our caregiving responsibilities? Where are the modern brands that show up with humility and authenticity, treating us like capable caregivers and smart consumers? And why didn’t anyone prepare us for this?

These conversations showed me that I had an opportunity to combine my professional background as a technologist with my personal experience as a caregiver to build a new piece of caregiving infrastructure.

Now I’m the founder of a venture-backed company called Quilt. We are creating a new source of trusted information and support that will accompany family caregivers throughout their caregiving journey. Our first product — a library of expert-led videos taught by physicians, attorneys, and other professionals — will be available to caregivers later this year.

Every caregiver knows they aren’t just a caregiver. Caregivers are also spouses, parents, siblings, friends, and colleagues. I would add another important identity to that list: Caregivers are consumers. Millennials start to turn 40 this year, a new decade that will bring new caregiving responsibilities for my generation along with it. I believe we will look to the marketplace to deliver long-term services and supports that are thoughtful, proactive, and community led — the kind of products and services we can increasingly find in other consumer categories.

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My generation’s expectations are clear. Now it’s up to us to build the modern caregiving infrastructure we are looking for — and that we all deserve.

Libby Brittain is founder and CEO of Quilt.