Some family caregivers go into it knowing that caring for a loved one is their fate, while others are unexpectedly thrust into it. But whether it’s expected or not, the family caregiving journey is rarely predictable, says Jody Gastfriend, a licensed clinical social worker, author and senior care consultant. “Many people are unprepared for all of those challenges: the physical, the logistical, the time, the financial and the emotional complexities of caregiving,” she notes.
It can be even harder for family caregivers sandwiched between generations, Gastfriend says. “That’s not to say it’s all a burden,” she adds. “There are also benefits and rewards.”
To better manage — and potentially even preempt — curveballs, here are 10 surprises and life changes commonly experienced by family caregivers, according to Gastfriend and other experts.
1. It can be a struggle to work
Family caregivers are rarely prepared for how much of a juggle it can be. If they work, adding caregiving can feel like having two full-time jobs.
Serious illness especially can obliterate caregivers’ lives, says Autumn Strier, co-founder and Chief Executive Officer of national nonprofit Miracles for Kids, which provides financial assistance and essential resources to parents of kids fighting life-threatening illness, many of whom also care for older loved ones. “It affects your mental health and stability,” she adds. “It’s 24/7.”
Family caregivers commonly miss so much work, they can’t keep their jobs and may lose both income and health insurance, says Strier.
Indu Navar’s husband, Peter, died in 2019 from ALS (Lou Gehrig’s disease), a fatal neurodegenerative disease. The dearth of caregiver resources she experienced led her to form EverythingALS to help others in her shoes, while advocating for better diagnosis and treatment. She explains that someone diagnosed with a serious disease like ALS eventually can’t work, and if they can’t afford professional caregivers, their spouse (or other relative) also must stop working. Now they have two lost incomes and no health insurance, plus massive medical bills.
If you’re concerned about missing work, you might consider proposing a flexible work-from-home arrangement. There are also programs for family caregivers to get paid.
2. Money may get tight
Beyond lost incomes, insurance coverage can deliver surprises. Gastfriend says senior caregivers are often shocked upon learning that Medicare doesn’t cover long-term care. She encourages future caregivers to familiarize themselves with the complex landscape of senior caregiving in advance to avoid surprises.
Strier adds that she’s seen families blindsided by the fact that insurance rarely covers expensive pharmacy supplements and specialty food and drinks. And what actually is covered can also be inconsistent and confusing, making budgeting a challenge.
At the same time, families with new diagnoses get emotionally overwhelmed and panic, dipping into savings and selling assets like cars and homes they may need later, points out Strier. She recommends pausing to seek professional financial advice before making rash decisions.
“I was very surprised by the degree to which the whole constellation of caregiving took over my life quickly. The medical tasks, the emotional pressure and strain, trying to understand his disease, trying to convey that information to others.”
—Kate Washington, former caregiver and author of “Already Toast: Caregiving and Burnout in America”
3. You’ll realize you can’t do it alone
Caregivers often start off thinking they can handle everything solo, only to realize support isn’t optional. Kate Washington, former caregiver to her spouse, who had a rare lymphoma, and author of “Already Toast: Caregiving and Burnout in America,” was stunned when her (now ex) husband fell ill. He required 24/7 care, leaving 42-year-old Washington juggling him plus two young daughters. Eventually, she had to enlist help.
“I was very surprised by the degree to which the whole constellation of caregiving took over my life quickly,” Washington remembers. “The medical tasks, the emotional pressure and strain, trying to understand his disease, trying to convey that information to others.” On top of that, she says, she’d lost her own support person.
“I advise people to ask for help from others, like family members and friends, early and often,” Washington recommends. “I regret that I didn’t ask for more help sooner, because I needed it.”
4. You may do tasks you feel unqualified for
Family caregivers may be prepared for cooking meals and pushing wheelchairs but not some of the requests that go far outside their wheelhouse.
Washington couldn’t believe she was expected to tackle advanced medical tasks at home, without experience or supervision. Over the years, she had to administer IV antibiotics, give injections and put medical nutrition in a port.
When researching her book, Washington found this is an unfortunate trend. “Tasks that a generation or two ago would be done by a nurse or in a medicalized setting are routinely being given to family caregivers at home without enough training,” she says. She was also taken aback when, after her husband was discharged following a medical emergency, doctors insisted he needed 24/7 care, not left alone for a minute.
“I couldn’t believe it would be medically ordered but no insurance or financial support for hiring in-home family caregivers to make it possible,” Washington says. She reminded the doctor she had kids and needed to sleep and buy groceries, but he said it was her job and that families usually step in and rally. A nurse suggested enlisting a rotation of friends, but Washington laughed at the impracticality of asking friends with kids and jobs to come over at night to take her husband and his IV tower to the toilet.
If something isn’t working, Washington urges caregivers to speak up. “It’s OK to insist on our humanity and our needs in the medical system,” she says. If it’s in the budget, consider utilizing paid caregivers who can take over the tasks you struggle with.
5. You’ll feel isolated
“Something that’s often hard for caregivers — and was for me — is it’s very isolating and done behind closed doors,” Washington says. “We often hear about illness and survival for a patient, but all of those stories have caregivers in the shadows. Caregivers often aren’t part of the narrative.”
Navar also remembers experiencing loneliness and isolation while caring for her ailing husband, feeling like she had nobody to ask questions. That motivated her to create an organization to provide the support she lacked.
That said, you may benefit greatly from seeking out a sense of community. Connect with people who can relate, perhaps through online caregiver support groups, suggests Gastfriend. “Because you talk to people who have lived experience as caregivers who can share what they’ve learned, but also provide support and validation,” she explains.
“Many people are unprepared for all of those challenges: the physical, the logistical, the time, the financial and the emotional complexities of caregiving.”
—Jody Gastfriend, licensed clinical social worker, author and senior care consultant
6. Resources can be hard to find
Family caregivers are always surprised by the difficulty of finding resources. Mounting bills fuel panic and isolation, adds Strier, so one of her organization’s missions is helping these families meet basic needs and avoid bankruptcy and homelessness.
It doesn’t help that some free resources, like volunteer respite programs, are local, Washington says. With none in her area, she had to rely on paid caregivers to fill gaps in coverage.
Experts we spoke to recommend starting with these resources:
- Social workers at the hospital
- Your area agency on aging
- Caregiver Action Network; Gastfriend praises their real-time support to caregivers
- Local or online caregiver support groups
- Support organizations specific to your loved one’s disease, like the Alzheimer’s Association
- Churches or religious organizations, which Washington says may have suggestions for resources or offer some
- Washington’s site, which offers a list of caregiver resources
- ARCH National Respite Network
- Easterseals’ database. Enter your zip code to see what local free and reduced-cost programs are available for financial assistance, medical care, food pantries, navigating government programs and more.
You’ll also do well to ask your workplace if they provide employer-supported eldercare benefits, which Gastfriend says are increasingly common.
7. You might burn out without breaks
Caregivers may feel guilty stepping away, but they shouldn’t. The intense stress of caregiving often leads to burnout that can manifest mentally, physically, emotionally and/or spiritually.
Family caregivers are vulnerable to chronic illness and require self-care, but that doesn’t mean just a massage or manicure. Instead, Washington views it as carving out time for basic maintenance to ensure you’re not neglecting your own health — even if it feels like another to-do.
Washington wasn’t conscious of her own burnout creeping in at first. “I started to get robotic, my empathy started to fade and I was always feeling overstressed,” she recalls. Eventually she recognized it and found helpful tools like exercise. She recommends caregivers read “Burnout” by Emily and Amelia Nagoski, and learn to recognize and address burnout early without feeling guilty about needing breaks.
Caregiving is a marathon, not a sprint, Gastfriend says, and it’s critical to accept you’re not a limitless pool of resources. “You have to replenish your reservoir and pace yourself,” she adds.
If taking breaks requires coverage, Washington suggests creating a network of caregivers for respite. For those who can afford it, this might include regular or as-needed paid caregivers, plus volunteer help from family, friends or community.
8. You’ll gain new purpose
Caregiving can transform pain into purpose. Strier says many families who’ve finished, or even are still in, treatment for their child’s illness start volunteering with the organization to support other families.
Not everyone is up for using their experience to support others, but Navar didn’t want caregivers to feel the same helplessness and loneliness she did. “This came into my life and became my purpose and conviction,” she reflects. Her organization offers virtual meetings, research opportunities, and other ways for caregivers and patients to feel part of a community with a purpose rather than just victims of a disease.
9. You’ll connect more deeply with loved ones
Caregiving can be a salve for old wounds when caring for someone you have a complex relationship with, Gastfriend notes. “It doesn’t always reset that dynamic, but it also opens up for new learning and being able to give back in a way that is very meaningful, not just for the care recipient but also the caregiver,” she says.
Strier adds that despite potential heartbreaks, so many “rainbows and unicorns” can come from caregiving, like family units gaining strength and resilience as they band together, support one another and learn to let go of the little things.
10. You’ll find gratitude in unexpected places
Fitting caregiving into our busy lives is a challenge, but Gastfriend says it can help us prioritize what’s really important.
Assess your priority as a caregiver, she recommends. For Gastfriend herself, it’s to be present and spend quality time with her mom. So she coordinates a team of paid caregivers to handle daily care so their time together isn’t fully consumed by tasks.
Of course, there are inevitably to-dos and moments of stress and uncertainty, Gastfriend says. But when they happen, she reminds herself that time is precious and she won’t get to do this forever. Focusing on being present and finding silver linings and gratitude enriches the experience for everyone.
The bottom line
Caregiving for a loved one could be the hardest thing you ever do. You might feel lost, lonely, cash-strapped and burned out. But the twists and turns may also surprise you and lead to a new sense of purpose, wisdom, community and gratitude. It can even bring unexpected laughs and joy.
Gastfriend remembers fondly how humor was essential during the many years she helped her father with dementia. She and her family were playful and joked with him and frequently played him music. He lit up whenever Gastfriend’s tween daughter sang to him. It was so impactful that in adulthood, her daughter became a singer/songwriter and started a business, Bridge To The Soul, to support seniors through music.
There’s no doubt caregiving is hard work, notes Gastfriend, but if we’re open to it, we can find gifts along the way. “Not only do we acknowledge what has been lost, but we also focus on what is still there,” she says. “When we do that, we really can internalize gratitude of having this time and what we can learn.”
