Beth Gore, Executive Director of the Oley Foundation, shares the profound challenges she faces as a caregiver for her six adopted children, each with unique medical needs. Living in Tampa with her family, Beth’s journey highlights the emotional and financial strain that comes with managing complex health issues, especially for her son Manny. Despite her dedication, the burden of high healthcare costs has led to significant hardships, including near-homelessness.
I live in Tampa with my husband of almost 30 years and our six children, all of whom are adopted and have special needs. Our family’s journey is unique, but in many ways, it reflects the struggles that countless others face when navigating the complexities of healthcare.
My role as a mother and caregiver doesn’t just involve caring for my health but also extends to my parents, my in-laws, and, of course, my children. The financial burden is one of the most challenging aspects of this journey. It has often felt like a fight, not just for health but for survival in many ways.
One of the more challenging aspects of this caregiving journey has been my son Manny’s health challenges. Manny is 15 now, and we adopted him when he was just nine months old while he was living in a hospital in Orlando. He was born to a 15-year-old mother who had not received prenatal or postnatal care. Manny was incredibly complex medically, and while we thought we had a firm grasp of the healthcare system, adopting Manny proved us wrong.
He came to us needing nutritional support—something we had never dealt with before. Despite having children with renal failure, open-heart surgeries, craniofacial surgeries, autism, schizophrenia, and bipolar disorder, Manny’s medical needs added an entirely new layer of complexity.
From the moment Manny joined our family, the financial strain intensified. For instance, the costs associated with enteral and parenteral nutrition—his primary mode of sustenance—were exorbitant and unforeseen. We were constantly in and out of the hospital, and during those hospital stays, the financial strain hit hardest. My husband had to manage the five other children while I stayed at the hospital with Manny, unable to work.
Living in the hospital was incredibly expensive. There were no programs to help with food, and I often went days without eating because we couldn’t afford it. I was embarrassed to tell anyone and didn’t want anyone to think my husband wasn’t a good provider. It’s one of those silent struggles you don’t talk about, but it was very real for us.
The financial stress became so overwhelming that we nearly lost our home. We couldn’t keep up with the mortgage payments, and my husband’s work suffered as well. We ended up borrowing money from family and even had to foreclose on our home at one point, moving in with relatives for six weeks to get back on our feet.
It’s important to understand that this financial burden isn’t unique to our family. There are countless families out there who don’t look like they’re struggling but are suffering under the weight of medical bills, loss of income, and other hidden costs associated with caring for a loved one. I’ve heard nurses ask other families nearby if they were worried about food or expenses, but no one ever asked me. I think there’s a perception that if you look “middle class,” you don’t need help, but that’s far from the truth.
We were close to homelessness, and without the support of my family, we may have ended up there. My parents, who weren’t financially well-off themselves, helped cover some of our bills so that we could eventually sell our house and regain financial stability. But even with that support, the emotional toll of trying to manage it all was immense.
Looking back, I’ve learned that community is everything. It’s what saved us, and it’s what I now try to model for my children. I’m a national patient advocate now, trying to help other families facing similar challenges. Through my advocacy work with organizations like the OLEY Foundation, we’re fighting for better policies, insurance coverage, and financial support for families dealing with complex medical conditions.
I’ve also learned the importance of asking for help—something that didn’t come naturally to me initially. It never occurred to me to ask about meal vouchers or financial support. I was too focused on just surviving, and there’s a stigma around admitting that you need help, especially when you don’t “look like” you’re struggling.
One of the hardest lessons I’ve learned is that the cost of caring for a loved one doesn’t just come from medical bills. It’s everything—food, transportation, housing, and lost income. And it’s not widely discussed, but it needs to be.
If there’s one piece of advice I could offer to others in a similar situation, it’s to build a community around you—whether that’s family, friends, or other caregivers. This kind of support is critical, especially when you’re one paycheck or hospital stay away from financial ruin.
I’d do it all over again. I’d fight for Manny all over again, even if it meant losing my house or going through all that financial hardship. But the system needs to change. No one should have to make those kinds of choices, and that’s why I’m committed to advocating for systemic reforms so that other families don’t have to endure the same struggles.
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The Oley Foundation is a non-profit organization that advocates for and represents the home nutrition therapy community. Our vision is to create a world where those on IV nutrition and tube feeding are united, supported, and empowered to successfully manage and thrive on home nutrition support. We believe in inclusivity and value the collaboration of patients, caregivers, and healthcare professionals. Oley’s programs are focused around advocacy, community, education and innovation at no cost to patients and their families. To learn more about Oley, visit www.oley.org.