One in seven North Texans provide unpaid care for an older adult in their life, and the median cost for assisted care rose 44% in the last five years, making it largely unattainable for middle-to-low-income families.
Leea Thompson Fudge is a career nurse who has been an elder caregiver for other families, but found herself dealing with an emotional landscape that felt foreign when both of her own parents needed care.
Fudge is now finding her way with the help of The Senior Source and their caregiver support group. She and Kimberly Knight, director of Caregiver Support Program at The Senior Source, recently shared their stories about life as a member of the caregiver generation with NTX Now host Ron Corning.
Leea’s story
For millions of Americans, becoming a caregiver doesn’t begin with a plan, but with a phone call.
For Fudge, that call came after her father suffered a heart attack. Her mother was already living with Alzheimer’s disease, complicated by longstanding psychiatric issues, and her father was caring for her.
“I remember exactly where I was and what I was doing,” she said. “Because that was the point for me that everything changed.”
Fudge now finds herself squarely in what is often called the “sandwich generation,” caring for aging parents while still raising her 16-year-old daughter. Thankfully, her daughter has become more independent, while her parents increasingly demand more of her time and emotional bandwidth.
Her experience also illustrates a part of caregiving that can be harder to talk about: caring for someone when the relationship was already complicated.
Emotional baggage
Fudge is an only child who left home at 17, and although she and her parents were never completely estranged, she described their relationship over the decades as difficult. Now, there is little opportunity to resolve that history.
“I’ve had to accept that that’s never going to be resolved,” she said.
Still, her parents need her.
“They have no one else,” she said. “So I feel obligated to take care of them. I don’t feel like I have a choice in the matter.”
That is a common sentiment among caregivers, who may be processing years of complicated emotions while managing the immediate demands of another person’s health at the same time.
“There’s all kinds of emotions that you cycle through rapidly in a role like this,” Fudge said. “Every time I think all the anger has been resolved, I find something new to be angry about again.”
Knight says stories like Fudge’s are far from unusual, and she often encounters caregivers who seem to be approaching their breaking point.
“Caregiver stress and fatigue is real,” Knight said. “Caregivers in our community are often thrust into the caregiving responsibilities and they are not prepared.”
Feeling isolated
The constant responsibilities can quickly consume parts of a caregiver’s own life.
“When you are a caregiver, it is very sacrificial,” Knight said. “There are so many different elements of yourself that you end up putting away, just because there’s not enough hours in the day.”
For Fudge, one important outlet has been caregiver support groups. She said hearing other people talk through their emotions and experiences similar to her own has helped her feel less alone.
“Being a caregiver, you become very isolated because you’re just running constantly putting out fires,” she said. “Especially if you’re taking care of multiple people at once … from the time your feet hit the floor until whatever time you go to bed at night, it is nonstop.”
That leaves little room for a social life, making the connections she has developed through support groups even more valuable.
“The support groups have also provided some sort of social interaction as well,” Fudge said.
Supporting the caregiver
The Senior Source is also working to identify caregivers who may need more individualized mental health support. Knight says the organization has begun using PHQ-9 assessments to help evaluate caregivers and connect those who need it with individual therapy, sometimes free of charge. She says caregivers shouldn’t necessarily view therapy and support groups as an either-or choice.
“Most times it’s a both-and—you need both,” Knight said. “There’s no shame in seeking that mental health support. In fact, it’s what makes you stronger and it’s also what makes caregiving sustainable.”
The pressure can extend across nearly every part of a caregiver’s life. Knight pointed to financial, medical and legal decisions caregivers may suddenly have to navigate, even as they continue working, parenting, and managing their own responsibilities.
Planning for the next generation
Fudge’s daughter has watched much of that unfold firsthand. Now a junior at Booker T. Washington High School for the Performing and Visual Arts, her formative years were marked by her mother navigating the challenges surrounding her grandparents. That experience has prompted conversations between Fudge and her daughter about what their own future could look like.
“I don’t want to put her in the same, into a similar situation to what I’ve been thrust into,” Fudge said.
For her, that means planning.
Knight said those conversations should begin long before a family is confronting a medical crisis.
“We all need to be developing a plan for aging and normalizing this conversation,” she said.
Families routinely plan for weddings, children, careers, and other major transitions, Knight noted. Aging is one of the few inevitabilities that many people avoid discussing.
With the cost of care rising and families potentially facing limited options when a crisis arrives, Knight said people should not only develop an aging plan, but make sure the people who may eventually help carry it out know what that plan is.
“More so now than ever before, we definitely need to develop a plan for aging,” Knight said. “Not only develop a plan, but share that plan with your family members.”
For families already in the middle of caregiving, that planning may have come too late to prevent the crisis. The focus then shifts to finding support where they are.
For Fudge, sharing her experience is part of acknowledging something caregivers often discover only after they have become one: caregivers need care, too.
Ron Corning is a co-host of KERA’s NTX Now. Got a tip? Email Ron at rcorning@kera.org.
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