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A Policy Wonk Reaches out to Bridge the Caregiver Knowledge Gap
posted 02.19.2016

Interview by Alison Biggar

Anne Tumlinson, who lives just outside Washington, D.C., is a 48-year-old divorced mother of two teenagers. In 2015, she launched the blog Daughterhood because she saw a huge need to connect family caregivers to information that would help them help their parents. As an expert in public policy on health and aging, she was unpleasantly surprised by her caregiving friends’ ignorance of the system, and difficulty navigating it.

In January, Aging Today spoke with Tumlinson about the impetus behind Daughterhood, and what motivates her to work on this labor of love.

Please describe your work background.

For the past 25 years, I’ve been working on health and aging services public policy, as an analyst and researcher in health and long-term care for older adults. I built a body of expertise on how our delivery systems work delivering care for older adults.

I started in the ’90s working on Capitol Hill for a member of Congress who was on the aging committee—John Lewis. Then I went to grad school at Brandeis University, the Heller School [for Social Policy and Management], and worked in the White House budget office on Medicare and Medicaid programs. It was like boot camp. I’m not a ‘budgeteer’, but it was good training to learn the ins and outs of those programs.

Are you still on Capitol Hill?

No, in 2000 my first kid was born, and [the White House] was a very intense work environment, so a colleague and I started a consulting firm. We focus on older adults, and have a range of clients: foundations, think tanks, providers …

Why did you start a blog?

I was beginning to see how these issues [around older adulthood] play out on ground level, and thought, ‘Wow, there is a big gap in knowledge.’

Why, when I’m talking to people about how the system works, why do they say it’s so overwhelming? I thought it was strange, because there are so many books, so much good information out there. I spent nine months thinking about what I wanted to do, until a friend said, ‘Just start writing. You’ll never figure it out until you start interacting with the public.’ In Jan. 2015 I wrote my first piece … and it got a really good response.

Did you have a personal experience caregiving with your own parents?

No, but a very close friend of mine went through a tough time. And I was very involved with both my grandmothers’ care; I spent a lot of time with my maternal grandmother, who had severe dementia—I was one of the respite care providers for my aunts. When she was put in a nursing home, I spent time with her and got a close-up view of the ways in which nursing homes struggle to attend to residents’ needs.

Why did you choose to name your blog Daughterhood and how much time do you spend tending it?

The word Daughterhood came to mind as I was writing the first post, as a comparison between motherhood and caring for parents—when it comes to impact on a career. As I say on the blog, unlike motherhood, we don’t expect daughterhood.

I try to put in about 10 hours a week. I think of it like one of my clients: each gets a full weekday of my time.

It’s a very forward-looking, positive blog. Before you write, what message do you want to impart to readers?

The most important thing to convey is that [the difficulties of caregiving] are not their fault! There are many male caregivers, geriatricians and service providers. But the difference between those men and these women, and the reason why Daughterhood exists, is because when a man encounters a dysfunctional system he thinks that it’s not serving him well. But a woman in our society, when she sees [the same system] she says there’s something wrong with me!

Other blog posts are practical, with programmatic information—what you need to know about Medicaid. [What to do] when you’ve been caregiving for your mom for 10 years, she has progressed in her Alzheimer’s and you’re out of money? The only option is a Medicaid-reimbursed nursing home bed—how do you feel about that?

The Medicaid blog is one I’m most proud of. The most important thing for readers to know is that it’s a safety net for a reason, it’s beyond their control, it’s nothing they did wrong that put them into this situation.

I get feedback [repeatedly]—that’s what readers really get out of it. There’s always that sense of isolation when you’re caregiving for kids, elders, your spouse; that isolation has a distorting effect on your perception. You begin to think you’re doing something wrong.

What do people tell you is the most difficult part of being a caregiver?

The guilt. That’s the thing I hear most about: ‘I have 12 sisters, none will help, my mom wants to live alone, I don’t want her to and now I feel guilty.’

People ask me very specific policy questions: ‘I’m trying to figure out how to qualify for Medicaid in New York when my mom lives in Virginia.’ I try to say you’re doing a good job, there’s no secret sauce out there, don’t worry about messing up, it’s impossible not to. They’re interacting with a world that is so complex, and beating themselves up over it.

[Then there’s] money. It’s amazing that many of my blog readers—master’s degree working professionals—are stunned to find out [caregiving] is hard for them. What I hear from them is about finances and economic insecurity: ‘I’m a single mom and was hoping dad would take care of me, now I’m finding I’m taking care of dad.’

Not only do I worry about caregivers in the act of caregiving, but now I worry about their future. Women older than 50 are the ones having the most difficult time getting jobs post-recession. As an adult making a decision to provide care for someone else, whether a child or an adult, this is unfair. There is a value to [the caregiving] people are doing—and they’re going to be screwed.

What’s the No. 1 issue policy makers should focus on to improve caregivers’ lot?

Creating a financing system … improving Americans’ opportunities to finance care, supporting family caregivers around economic issues. How do we prevent a situation where we have widespread impoverishment among older adults in 20 years? Poverty is sad, poverty among frail older adults is really sad.

Please explain the concept behind Daughterhood.org’s Daughterhood Circles initiative.

Taking care of an elderly parent is an invisible job in this country, and chances are it’s pretty hard to find a ready community where you can compare notes or get advice. This is why we have to create, deliberately and consciously, what I am calling a Daughterhood movement. Daughterhood is what happens when we put our lives on hold to take care of our parents. Daughterhood circles are small groups that get together regularly to hang out, relax and help each other navigate caring for aging parents.

What do you hope to accomplish with Daughterhood?

Five years from now, I'd like for Daughterhood—what happens to you when you are unexpectedly taking care of your parents—to be a familiar concept to many of the women who find themselves in this situation, and for them to know that there’s a place to turn for resources and community.
 


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