THIS TIME ON CODE WACK!
Suddenly, with little notice, you may find yourself having to step into a caregiving role for a friend or family member. Maybe you already have. It could be an aging parent, an ailing partner or an injured child. What does it really cost—emotionally, physically, and financially—to care for someone you love?
To find out, we recently spoke with Dr. Mary-Elizabeth Harmon, a scientist turned storyteller and caregiver whose life changed in an instant. What she thought would be a brief visit to her father ultimately became a years’ long caregiving journey that nearly pushed her to the brink-and ultimately inspired her vision for “vertical villages,” where neighbors foster caring communities and economies to support one another through life’s toughest moments.
As the founder of Village Company 360 and the caregiver of her mother in Virgina, Dr. Harmon reveals just how unprepared our systems are for the caregiving crisis—and why all of us need to pay attention.
This is the first episode in a two-part series.
Check out the Transcript and Show Notes for more!
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SHOW NOTES
WE DISCUSS
Welcome to the show! Tell us a bit about yourself and how your caregiving journey started.
Dr. Harmon: “… my name is Mary-Elizabeth, and I describe myself as a scientist turned storyteller, caregiver, and village catalyst. So I know that’s a lot.
“So the scientist part is that I’m a former research biologist, but it wasn’t a good fit. And so I went on this long journey to try to find something that fit better. And in the process, I became an analyst for the federal government, but then eventually resigned.
“And then, during that time when I had resigned from the government, my father had been placed on hospice. So I left Atlanta where I was living, and I went to Chicago to go spend some time with him before he died. And in that process, I became his full-time caregiver. So my father was fully bedbound, and he had dementia, … he required 24/7 care, and that wasn’t anything that my family could financially afford.
“… the expectation was that he would, you know, die within the next six, seven months or something like that. And that did not happen. In fact, he lived another two and a half years.”
Tell us about that. How did your caregiving experience impact and inspire you?
Dr. Harmon: “… I became so exhausted that I fantasized about jumping off the balcony. And I thought, this is crazy. I’m in an eight story building full of people.
“Surely there is somebody in this building who would help me if they knew what was going on, in the same way that I would help someone if [I] knew what was going on. And I said, we need villages in buildings, vertical villages.
“And so I got the idea of working to foster caring communities for and by neighbors, particularly in apartment buildings. And so a village. So that’s how I call myself a village catalyst. And that has led me to start a business called Village Company 360. And that’s what I’m working to develop today.”
Interesting! What about compensation? Are caregivers compensated, and how? What about you?
Dr. Harmon: “… it’s estimated that our caregivers are providing over $800 billion of labor a year, right? So if caregiving were a business, it would be the world’s largest revenue generating company, right?
“And so to just say that, oh, we’re unpaid, wait a second. We are providing the largest revenue generating, you know, activity in the world of a business. And so we are not being compensated or reimbursed in the same way as a healthcare system would be reimbursed if a nurse or a doctor were doing that work. So I choose that word very intentionally..
“ … in different states and in different circumstances, caregivers actually can get paid … There are opportunities depending upon where you live. Now, as I said, my father had been living in Chicago when I became his caregiver. And at that time, I was actually able to get paid for a couple of months. So what happened was the city of Chicago had resources. … My parents were eligible for 20 hours a week of Homemaker Care. So it wasn’t, it wasn’t anything medical, but to have somebody come and help, you know, do the laundry, help with food preparation, and also actually help my father eat and drink because he couldn’t do those activities on his own.
“… that’s how I was able to get paid for 20 hours of caregiving a week. But when we moved to Alexandria, Virginia, the city just didn’t have the same level of resources as Chicago. So I wasn’t able to replicate that.
“… people should very much look into resources for caregivers because they do exist, you know. They are scant … , there’s not an abundance, but it’s not an impossibility to get paid. But at this current moment, I am not.”
Helpful Links
The Caregiving Years Training Academy
The Huge Financial Toll of Family Caregiving, AARP
How does America care for the elderly?, USAFacts
Program for All Inclusive Care for the Elderly, CMS.gov
The Program of Comprehensive Assistance for Family Caregivers, Veterans Administration
The Grassroots Future of Aging, National Continuing Care Residents Association
Episode Transcript
Read the full episode transcript.
Guest Biographies: Dr. Mary-Elizabeth Harmon
Dr. Mary-Elizabeth Harmon is a scientist turned storyteller, caregiver & founder of Village Company 360, which exists to inspire wonderful places to grow up & grow old by fostering caring communities & caring economies for & by neighbors.
A graduate of MIT and The Johns Hopkins School of Medicine, Mary-Elizabeth left the laboratory as a virus researcher and worked as a science advisor at Greenpeace. From there, she joined the U.S. Dept. of Health and Human Services, first at the Centers for Disease Control and Prevention and later in the Office of Inspector General (OIG).
In OIG, Mary-Elizabeth evaluated programs and wrote data-driven stories (i.e., reports) for their improvement for Congress, including a compelling account of Medicare home health fraud that prompted regulatory changes and several indictments. For this and other work, she is a two-time winner of the IG’s Exceptional Achievement Award.
Through Village Company 360, Mary-Elizabeth is mixing her love for storytelling with wisdom she gained as an analyst, environmentalist, caregiver and community builder to work with partners to grow the ranks of village growers and supporters, and to create ways to connect neighbors of all ages to each other and to convenient medical care.
A Michigander who grew up in Kenya, Mary-Elizabeth has been making informal villages since returning to the U.S. for college. Her mother dubbed her The Caregivers’ Caregiver for providing emotional, administrative and home remedy support to aides who helped her take care of her father who had dementia.
Visit her personal website or get The Prosperity Papers Recap for a monthly email to stay up on all her work with ONE subscription.
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