Caregivers suffer from isolation and stress and often find little support : Shots

Dawn Shedrick is matter-of-fact about the heartbreaks of caregiving. She is clear and calm when she describes its hardships and grief. She has looked after her mother, who has multiple sclerosis, for more than 30 years. She has been through a lot, and she keeps going.

There’s only one thing that puts the catch in her voice.

The tears don’t come when she tells the story of her mom’s diagnosis of MS, a disease that attacks the nervous system and can cause blindness, dizziness, painful muscle spasms and mental fog, even paralysis.

It’s not when she talks about moving back home, and putting her plans for graduate school in California on ice. It’s not even when she describes her mom’s recent crises — three hospital stays and a terrifying near-miss with sepsis, which can quickly turn fatal.

When she tells her story of love and endurance, the only time that Dawn Shedrick’s voice tightens is when she talks about the isolation she felt, and about all the other caregivers who dwell there in those lonely shadows. For decades, she held it together, put on a brave face. She watched her mother struggle, and kept the sorrow to herself.

Her situation is all too common. The latest estimate is that 106 million people do some kind of unpaid care for an adult in this country. But because family caregiving is not a public conversation, many of them — of us — feel invisible. Nearly half say they are lonely, more than twice the U.S. rate of 22%.

Isolation makes the other sorrows of caregiving — stress, guilt, resentment, anxiety, money worries — harder to bear. It alters the brain, transforming difficulty into despair.

Even though she herself is a social worker and therapist, Shedrick kept quiet. Withdrawn, even. “I started to go within,” she says. “The world was moving at its own pace around me.” She became irritable, tired all the time, and deeply sad. Finally, she realized she was depressed.

Almost 60% of the roughly 11.5 million people caring for someone with dementia report high or very high emotional stress. Between 40% and 70% of family caregivers have symptoms of depression. Caregivers of people with incurable cancer actually report more anxiety than the patients themselves.

One major insight that helped Shedrick out of the murk was coming to see herself not just as a loving daughter but as a caregiver. She was a soldier in an invisible army, one of legions of strangers engaged in a labor of love, side by side, unknown to each other. She was not, in fact, alone.

Her social-work training also helped her see that her situation was not her fault or her failure. It is a system-wide failure. Actually, when it comes to caring for adults, there isn’t really a system to fail. There are just caregivers, trying to make it all work.

“When I really grasped that, it relieved some of the guilt,” she says. “I’m not here because my mother is sick. I’m here because our system is not designed to offer all the care for chronically ill, disabled people.”

Those insights — and therapy — helped her bear the isolation. But it wasn’t until COVID hit, when so many others suddenly became caregivers due to lockdowns, that things really shifted. As friends and colleagues turned to her for support and advice, she began to open up about her own experiences. In the midst of a pandemic that made so many people so lonely, she found community.

Searching for support

When Shedrick first came home after college to help her mom in 1996, her role was mostly keeping an eye on things. Her mother could still walk with a cane, and was still a terrific cook. Shedrick did chores around the house, or held her mother’s hand while she picked her way down the front stairs.

She revered the woman she still calls “mommy”, the widowed working mom who raised the kids all on her own.

Shedrick didn’t call herself a caregiver at the time. Many people don’t. They call it just helping out, which might include shopping and lawn-raking, managing prescriptions and insurance denials, or the hands-on work of bathing and dressing someone who can’t do it on their own.

In 2004 her mother began to need a wheelchair, and went to the hospital multiple times. She was becoming a prisoner of her own body, and Shedrick was watching it happen, helpless.

A self-described high achiever, she was determined to do this job right. But she began to brood about what was to come.

“Witnessing her experiencing this awful — and that’s putting it nicely — awful disease, has been really hard for me over the years,” says Shedrick. “Really really hard.”

And the loneliness got heavier.

She’d met someone who seemed a wonderful match. Months into the budding relationship, that woman broke it off, saying that Shedrick’s loyalty to her mother was just an excuse, a way to avoid a deeper commitment. It was devastating.

Shedrick’s sister was also living in the house, and the stress of the situation put a wall between the siblings. For a while, they were not on speaking terms. Even so, when her sister moved away in 2007, the loneliness threatened to drown her. Shedrick often felt that nobody around her understood the shape of her life, the way it revolved around someone who was suffering.

She did not want her friends and family to worry about her. Instead, she’d say she was doing an errand, and drive off. The errand was to park her car and sit there for a while, crying.

As psychologists point out, loneliness isn’t just about physical isolation. It has more to do with feeling invisible or cut off from the world. Research shows that the most pernicious effect of loneliness is to make people think they cannot reach out to others, that nobody will understand or respond. Lonely people become wary and guarded, likely to misinterpret a friendly gesture.

And the loneliness amplifies the other strains of caregiving, such as anxiety. The majority of caregivers — 72 % — who say they’re lonely also say they’re highly stressed out. Caregivers who have support and connections are much less likely to be highly stressed, at just 24%.

In 2018, Shedrick began opening up to her cousin, a very close friend. After that, a new therapist with expertise in caregiving pushed Shedrick to find more social support, and the COVID pandemic accelerated that process. She and her sister eventually reconciled. “We’re the closest we’ve ever been,” says Shedrick.

Caregiving got more intense: helping her mother with a commode, giving her injections, cleaning and dressing pressure sores. But Shedrick had solidarity. Now that she was feeling more stable, it was time to offer something back.

‘You are not alone’

Most assistance for family caregivers focuses on the needs of their loved ones, such as ways to retrofit the house for someone using a walker, or help with paperwork. Resources aimed at the stressed-out caregiver are harder to find.

A few years ago, Shedrick learned about the Caregiver Action Network, a DC-based organization that among other services staffs a hotline for caregivers who need all kinds of help — including emotional support. The group started the hotline because, despite their numbers, there was no dedicated information portal to help them find resources and help.

Figuring out what’s available, and how to get it, can be overwhelming for someone who is already depressed or anxious.

Are you a caregiver? Find support:

• Get practical help and emotional support from social workers at CAN’s help desk, open from 8 am to 7 pm Eastern time.
• The Rosalynn Carter Institute for Caregivers crisis line offers 24/7 text-based mental health support; text TOUGH to 741741.
• Take a quiz from the advocacy organization Archangels to identify your caregiving intensity level and get connected to resources.

What callers want more than anything is to be seen and recognized, says CAN CEO Marvell Adams. “Every resource we have, the whole purpose is to give awareness to caregivers: You are not alone,” he says. “We hear over and over again: They don’t always want somebody to solve it. What they want is somebody to empathize with them.”

Shedrick joined the board, aiming to help other caregivers find support. She’s seen how hard it can be. Her consulting company, JenTex, provides training, professional development and continuing education for social workers and those in health and human services.

Because of her expertise, friends would often ask her where they could find a therapist who understands the emotional weight of care — and she realized she didn’t have much to offer them. Many therapists don’t get it, she says. “They don’t realize it’s a distinct role, with job-like responsibilities.”

 So far, there hasn’t been a convenient way for a therapist to specialize in caregiving. So Shedrick is now creating a training program to teach mental health professionals and caseworkers about the diversity of caregivers, their stresses, and the way family and cultural expectations influence the role. She wants to equip practitioners with ways to identify burnout, and help their patients with proven therapy techniques. She hopes to launch it in 2025.

Her mother’s health has deteriorated in the last few years. Shedrick now manages the binder of medical information that organizes everything that’s happened — every doctor, every symptom. It weighs on her, but, she says, she now knows who she is, who to lean on for support, and has a way to connect to others, by talking about her experience.

“It gives me relief when I’m affirmed and validated, and that’s what I hear when I share my story,” she says. “If one person finds value in it, it’s worth it.”

Kat McGowan is a caregiving reporter based in Berkeley, Calif. This story was supported by the Rosalynn Carter Fellowships for Mental Health Journalism.

Photography by Eugene Richards. Art direction by Katie Hayes Luke. Editing by Carmel Wroth.