A Q&A with advocate and activist Ai-Jen Poo on how to break the isolation of caregiving

And how siblings can support the primary caregiver in their family when they live hundreds or thousands of miles away.

I had the opportunity recently to sit down via Zoom with Ai-Jen Poo, director of the National Domestic Workers Alliance (NDWA) and co-director of the Caring Across Generations campaign and the author of The Age of Dignity: Caring for a Changing America (The New Press). Even across a screen, I could sense Ai-Jen’s empathy, warmth and deep compassion for people and the work that she does so tirelessly.

Ai-Jen has been organizing immigrant women workers since 1996, spearheading legislation to ensure better pay, working conditions and basic rights for domestic workers. In her moving Ted Talk, she reminds us that domestic work and caregiving “is the work that makes all other work possible.” You can hear a terrific interview with her on We Can Do Hard Things, episode 246: The Answer to Caregiving Burnout. She is on Newsweek’s 150 Fearless Women list and Time’s list of the 100 Most Influential People in the World.

Readers of Living in 3D know that my mother, 87, has late-stage dementia and for nearly a year I was her full-time live-in caregiver and remain her power of attorney and healthcare surrogate. In September I made the wrenching decision to move her to a memory care facility just 15 minutes from my home where she is well cared for and where we can visit her every day (and take her for the frequent outings for ice cream or brunch that she enjoys). Ai-Jen knows better than most people the struggle of family caregivers. In fact, caregiving has become her “obsession” and we are all luckier for it.

In our conversation, I asked Ai-Jen about the challenges of caregiving, especially for loved ones with dementia and how siblings and other family members can be a team in supporting their loved one. She also provided some wonderful resources as well as an invitation for all of us to join the movement Caring Across Generations to help families, caregivers, disabled people and older adults live, work and age with dignity. I recorded a voiceover of today’s newsletter to make it more accessible for people of different abilities.

Ai-Jen Poo, director of the National Domestic Workers Alliance (NDWA) and tireless campaigner and advocate for a care economy that serves everyone.

How do you personally think about the prospect of caregiving when it comes to your own parents as they age? Even with your expertise, do you imagine it will still be hard to make decisions around your parents’ care?

Advocates in the care economy who work on these policy issues talk about this all the time. In our personal lives, we also struggle with programs and systems that are outdated, patchwork and hard to navigate. There are entire divisions of social work schools devoted to training people to help other people navigate the complexity of these systems. And it's still not sufficient.

We need to embrace caregiving as a collective project. It was never meant to be shouldered by individuals within families alone. Given the amount of care we need as a country, we will need a strong care workforce that is trained and fairly compensated. We will need family caregivers who are supported. We will need respite care, we will need neighbors, and we will need friends. At the heart of everything, the value must be the human experience—human dignity—if we are to break the isolation that currently defines the experience of caregiving in this country. If we can break out of that dynamic, I think it holds the key to some of the most existential challenges we face as a species, as a society, not least the epidemic of loneliness and social isolation.

What advice to you have for caregivers of loved ones with dementia, especially as they struggle with their own mental, emotional and physical well-being in caring for their loved ones?  

I have observed a special kind of isolation that comes from the prolonged process of grieving somebody you love or who has played a profound role in your life who has dementia: you are losing them and their presence. That dynamic is particularly painful and challenging. I don't have the words, not having had the experience of being a caregiver for someone with dementia. But it sounds like every day is a journey and you don't know what any given day will be like.  

Actress Yvette Nicole Brown has said that in caring for her father with Alzheimer’s she sees herself as the keeper of her father's memories. [See “6 lessons I learned as my father’s Alzheimer’s caregiver.”].

That responsibility is enormous, but it's also profound. Every caregiver is a keeper of the dignity, the agency, and the quality of life of the people that we love. But with dementia, we also have the additional role of the keeper of our loved one’s memory which is special. That responsibility and role can be very isolating but also incredibly rewarding.

With more than 16 million people in the U.S. providing unpaid care for family and friends with Alzheimer’s and related dementias (that’s 26% of Americans), this is something an increasing number of people are experiencing.  

Caregiving for an elderly parent, whether for dementia or other conditions, often falls to one sibling due to choice or circumstances. What can other siblings do to support the one who has primary responsibility?

As I talk to caregivers, what comes up repeatedly is the idea of being proactive in structuring the relationship of care and recognizing that it's okay for different people to play different roles. It’s important to set the terms of support and to be explicit about what each person in the care squad needs in order to be a productive, healthy, and collaborative member of the team.

Many emotions come up among family members, like guilt, especially if a family member lives far away. If one sibling lives with the family member and the other lives 2,000 miles away and can’t be more hands-on in the loved one’s care, a lot of resentments can build. I think that is avoidable if there is an explicit conversation.

A lot of assumptions get made when there isn't good, consistent, regular communication. The worst time to set terms around care is when you're in the middle of a crisis.

So to the extent that any of us are in a space where we can think and plan ahead and have the conversations with all family members before the crisis, that is ideal, rather than in the moment when emotions are high and no one is at their best.

In this explicit conversation, family members talk openly how each of them see their role in the caregiving team, what their vision is, how this care squad can work together. And for a sibling who has a larger share of the caregiving burden, the other family members need to ask: what do you need from me so I can show up in a way that supports you? The key is for each person in the team to be really explicit in thinking about those questions and being open to share and listen.

What resources do you recommend for dementia caregivers or for caregivers in general (aside from your own wonderful book)?

Caring Across Generations: a movement dedicated to a world where everyone can age with dignity, and caregivers are respected and supported. The organization works on policies and campaigns, elevates stories of caregivers and older adults and works to shift the culture to value care and embrace aging. Anyone can join and support campaigns like #paidleaveforall! to extend the reach of the Family and Medical Leave Act.

The Women's Alzheimer's Movement founded by Maria Shriver. In 2003, Maria Shriver’s father, Sargent Shriver, was diagnosed with Alzheimer’s. Today she is one of the most internationally recognized Alzheimer’s advocates, shining a light on the disproportionate and particular impact of Alzheimer’s on women. Maria Shriver’s Sunday Paper is an award-winning newsletter to inspire and encourage caregivers and everyone else to live a more authentic and meaningful life while moving humanity forward.

Hilarity for Charity (HFC): Bringing Light to Alzheimer’s was founded by actor Seth Rogen and wife Lauren Miller Rogan, a national non-profit on a mission to care for families impacted by Alzheimer’s disease, to activate the next generation of Alzheimer’s advocates and to be a leader in brain health research and education. An increasing number of young people are becoming caregivers for family members and HFC is a great resource for them. Of particular note is Humans of Dementia, their annual storytelling and photography contest that invites young people to share their personal stories of loss, fear, resilience and hope in the face of Alzheimer’s disease and related dementias. They also offer a Caregivers Respite Program providing grants that give 3-6 months of free, professional, in-home care to relieve full-time caregivers. This video shares how much that relief meant for two young family caregivers.

It is my hope that this interview and resources are helpful to you—or to someone you know—who is a caregiver for a loved one with dementia. Feel free to share it! I’d love to hear about your experience of caregiving in the comments and what you most think needs to happen to make caregiving work better for American families.

Three Songs for 3D:

Divorce

“The Age of Worry,” Yebba

Don't be scared to walk alone
Don't be scared to like it
As there's no time that you must be home, so
Sleep where darkness falls

Dementia

“Across the Great Divide,” Kate Wolf

Where the years went I can't say
I just turned around and they've gone away

I've been siftin' through the layers
Of dusty books and faded papers
They tell a story I used to know
And it was one that happened so long ago

Destiny

“My Silver Lining,” First Aid Kit

Something good comes with the bad/A song's never just sad /There's hope, there's a silver lining/Show me my silver lining