It may happen suddenly: assuming the caregiver role for an acutely ill spouse or severely injured child. Disaster or emergency can compel you to quickly take on responsibilities you never expected.
In another scenario — like an aging parent who’s experiencing subtle changes in their physical or mental functioning — you can find yourself picking up helpful tasks, one by one, until that mushrooms into a major caregiving undertaking.
What is a caregiver? Well, a caregiver can be anyone who provides assistance in meeting another person’s essential or daily needs – either paid or as a volunteer. Unpaid caregivers, sometimes called informal caregivers, are typically family members or close friends.
Owning the caregiver title may take a long time. Many people don’t recognize, or can’t acknowledge, that they’ve become caregivers for a family member until they’re into it knee-deep.
How does someone know they’re a family caregiver? Some finally experience their ‘aha’ moment when it becomes clear that their efforts go far and above just helping out Mom or Dad a bit — they’ve become the primary or sole support, and they can’t continue without some relief and respite.
Family caregivers need to take care of themselves, too. Experienced caregivers who’ve been there are educating and encouraging others facing similar situations to do so.
[See: 9 Rewards of Caregiving.]
Forever-Changed Family
When Heather Zoccali first made out the sound of sirens, she had no idea of their significance. It was March 10, 2015, and her older son, Connor Walsh, was 16 years old. They’d had a typical parent-teen dispute before he left for school that morning.
“I had a really bad headache so I laid down,” she says. “Then I heard all these sirens and I remember thinking: Gosh, I hope whoever that is, is OK.”
But then her husband, who had rushed home from work, entered the room, asking why she wasn’t picking up her phone.
“He said, ‘Connor’s been in a serious accident,'” Zoccali says. “And I realized those sirens were for my son.” A vehicle-pedestrian accident with a hit-and-run driver left Connor permanently paralyzed from the waist down. “It changed our family forever,” she says.
That was the beginning of the hardest phase in Zoccali’s long-running history with caregiving. The experience eventually inspired Zoccali to be a co-founder of the Brutally Beautiful Foundation, a nonprofit that offers services to and advocates for holistic care for family caregivers. The group’s mission is to create intentional and innovative programs designed to cultivate forgiveness, playfulness and reset.
[See: Questions Doctors Wish Their Patients Would Ask]
All-Engulfing Caregiving
Caregiving can span generations. As a child, Zoccali grew up in a challenging, sometimes traumatic, environment of family caregiving, although no one in the family put a name to it at the time or discussed what they were going through. Zoccali’s parents and a sibling struggled with difficult physical and mental health issues that affected everyone around them.
Now, Zoccali and her family would be there for Connor, but she intended to handle things differently than her family did while she was growing up — with openness, honesty and sometimes even sharing moments of humor.
After Connor’s critical care hospitalization and surgery, he was transferred to the Craig Hospital in Englewood, Colorado, to undergo intensive rehabilitation. The facility experience was intensive.
“You’re in there for two or three months — and it’s work,” Zoccali says. Days started early and lasted long. As Connor underwent comprehensive rehab, his family attended classes and caregiving training. Emotions ran strong for the 16-year-old patient, his younger brother and their parents.
Observing other parents of kids with traumatic injuries at the rehab facility was an ‘aha’ moment for Zoccali. “I just saw all these family caregivers walking around as shells of themselves,” she says. Relating to their pain, she asked if they could get together for mutual support.
One day, desperately needing a break from the bedside, she invited some fellow parents to take a quick break.
“I asked, why don’t we walk across the street and have a martini, because I could use one and some time out of the hospital,” she remembers. “And they looked at me and (basically asked), ‘Are we allowed to do that?’ I was really struck by that. It dawned on me that caregivers don’t give themselves permission to take care of themselves, permission to think they were worth taking care of, to take moments and set boundaries.”
Setting boundaries is essential for self-preservation, Zoccali realized. For caregivers, she says, taking care of yourself is a matter of speaking up, as in: “Hey, I’m going to shower and I’m going to eat and take a walk. You’re OK now and I’ll be back. If it’s a 911, let me know. Otherwise, give me some space — you need it, too.'”
Zoccali needed to take her own advice, as well. “I had to let go of control, a bit,” she realized. “Delegate it out; give it back to the nurses. I can’t control everything, but I can control how I’m going to react to this.”
[READ: Decorating Tips for Assisted Living.]
Extended Family Caregiving
Becoming seriously ill gave Zoccali another perspective as she eventually became a care recipient herself due to a devastating mystery illness that started showing symptoms in 2007. She suffered life-threatening complications, including seizures, kidney failure and heart arrhythmias, before she was finally diagnosed with several chronic conditions, including Ehlers-Danlos syndrome, a rare genetic disorder.
Kids sometimes serve as caregivers in the shadows. Children can become de facto caregivers, taking on adult-sized responsibilities, sometimes at very young ages.
Early on, Max, the younger son in the family, pitched in on his own initiative, often tending to his older brother and helping his mother without being asked. From the outside, Max appeared to be doing fine, his mother says. But when she asked him how he was, he asked if he could be honest with her.
“He said, ‘I feel like a ghost in this family right now,'” Zoccali recalls. People would inquire how his mother was doing, how his brother was doing, but neglected to inquire about him. Zoccali realized she had to “reframe” with others around them so they would remember to ask how he was doing.
Being open, honest and direct has helped the Zoccali family get through the darkest phases. Straightforward discussions — within the family and to other people in their orbit — were crucial to clear the air and move forward.
Moving Forward
Connor has come a long way in the eight years since the accident and is now attending culinary school in Boulder. Now, his mother says, he’s at a point where he’s accepted his disability and is trying to come to peace with it. His younger brother, Max, is earning a degree in fire science, still intent on helping others.
Zoccali is managing her health and continues to spearhead initiatives to help family caregivers reclaim their identities. To that end, for instance, Brutally Beautiful runs fully-funded retreats, she says, “to make them realize that they’re so much more than just a caregiver.”
Stealth Caregiver
Rosanne Corcoran is the host, creator and executive producer of “Daughterhood The Podcast: For Caregivers.” Corcoran, who is based in Pennsylvania, shared her experience of becoming a family caregiver in an email to U.S. News:
“My fiercely independent 81-year-old mother told me she felt her memory was changing and my greatest fears were realized. I thought her telling me that was a positive and we would see her doctor and have a plan. Nothing could have been further from the truth. Her primary physician dismissed our concerns with ‘if she gets lost when she’s driving that’s a problem.’
Mom hadn’t driven in 20 years — I drove her everywhere.
“From that point on, I became what I called a stealth caregiver. She was in that beginning stage (of memory loss) where she was still going to work and socializing with her friends, but I could see some changes. I always spoke to her multiple times a day and would see her at least four times a week, but now I was scrutinizing everything. I would examine her checkbook to make sure her numbers are balanced. Count her pills when she was in the other room. Check her refrigerator to see if food was being eaten.
“It all felt surreal to me. Her doctors and my siblings did not want to acknowledge any changes but once she said those words to me, that’s all I could think about. As the next few years advanced, her health began to change. She stopped socializing, cooking and leaving her apartment.
“I began going to her apartment every day. I would drop my daughter off at school and drive down to Mom’s apartment. Stay there until 2 p.m., leave to pick my daughter up and call mom another three or four times the rest of the night. There were also times I would go back down to her house if she wasn’t feeling well.
“This went on for a year until she moved in with us in 2015. When I asked my family, my husband and two children about my mother moving in with us they said, ‘If she doesn’t — we will never see you.'”
Intervening for a Parent in Need
In late 2013, Theresa Wilbanks and her husband were living in France. Her father, a widower in his early 90s, was living independently in the Tampa Bay area of Florida. Wilbanks made sure to keep in touch.
“I was talking to him about every third day,” Wilbanks says. “We had long conversations. He seemed to be doing fine — he was driving and managing everything on his own.”
But then, one day, there was a fire incident at her father’s home. “He always lit candles and he’d fallen asleep,” Wilbanks says. “And the candles burned through the tray and into his dresser. As he was telling me about it, he seemed to be downplaying it.”
“That kind of sparked the idea we had to get back, so we did,” Wilbanks says. They returned to the U.S. in April 2014. The process of relocating from overseas was just the first of many seismic caregiving changes. Much later, after Wilbanks had processed it all, she founded Sustainable Caregiving to help others navigate their journey.
Multifaceted Caregiving
Caregiving for an older adult can involve so many aspects: hands-on physical assistance, medication supervision, appointments and errand-running, maintaining a safe home environment, managing finances and preventing isolation and loneliness.
At first, for Wilbanks, when she learned her father’s identity had been stolen — twice — and that he was losing track of paying bills, like insurance, it meant she had to help take the reins and sort out the situation.
As her father’s health took a further sudden downturn after a stroke, it hit her that caregiving had reached another dimension.
“When my dad had the stroke, that was the moment,” she says. “The hospital asked me to choose a rehab facility, so I went and visited a couple of them. Just all of a sudden, I realized that the weight of this was just crushing. I felt like I could make the wrong decision and make a mistake that would affect the rest of his life.”
When her father was discharged from the rehab facility she’d anxiously chosen, the case manager handed her a thick packet.
“She said, ‘It’s the resources you’re going to need,'” Wilbanks recalls. “So that night I’m home, in tears, going through all of them on the computer at midnight. I don’t know what he’s going to need. There were waiting lists for each one, so I just put him on all of them. At this point, I felt like I was completely in over my head. I was unprepared, overwhelmed and all alone.”
It’s not surprising that caregiving can lead to emotional fallout and burnout.
“Something I recognized later was that Dad was at one of the lowest points in his life, certainly after the stroke,” she says. “And I was at one of the lowest points in my life, because I felt completely out of control. I was in over my head and struggling with emotions: the trifecta of guilt, anger and resentment.”
Caregiver Stress
Wilbanks had experienced a caregiving environment in her teens, as her parents provided care to one of her grandmothers, and later to another grandmother, in their home. At the time, she says, she didn’t truly comprehend the impact it had on her parents.
“I didn’t understand the stress they were under,” she says. “It was right in front of me and I didn’t see it.”
Decades later, while Wilbanks was now caring for her father, she came across journals he’d kept at the time he was caring for his 98-year-old mother. As she read selections aloud and they discussed them together, she was stunned at how frankly he described challenges he was going through — and how a lot of what he had written was what she was now actually feeling.
Wilbanks was also struck by the level of care her parents had provided to their elders.
“I was thinking: Did the caregiver gene skip me?” she says. “Because they handled all of this and I wasn’t aware. It was a lot of fear. I don’t know if I realized (at first) that I was a caregiver. Things just got really intense very quickly.”
Reaching Out to Other Caregivers
It’s important to own the fact that you’re a caregiver, Wilbanks says. Otherwise, it can be detrimental if you’re not looking ahead to the future and not having conversations with loved ones, gently bringing up delicate subjects, planning and preparing.
For instance, if you never settle issues like power of attorney, a parent’s medical care wishes might not be followed.
“Once I realized I was a caregiver, I began really trying to find resources,” Wilbanks says. “Not just for Dad, to look at the future and what he would need, but also for me and what I needed for emotional support and connection. There’s a validation void when we become a caregiver. There’s nobody around us who gets what we’re going through. We have to find new people who get what we’re going through, whether it’s a support group or just a counselor or therapist.”
From her experience, Wilbanks was inspired to help other family caregivers. She started her organization and wrote, “Navigating the Caregiver River: A Journey to Sustainable Caregiving.”
Sustainable Caregiving Tips
Wilbanks shares these strategies (fleshed out on the website and in a podcast series) for sustainable family caregiving:
— Set boundaries to protect your time, emotions, energy and capacity for compassion.
— Cultivate mindfulness to help you act rather than react.
— Re-imagine self-care and resume participating in your passions and interests.
— Let go of conflicts and futile attempts to control people, processes and outcomes.
— Let out your emotions by sharing or venting for release.
— Plan for how you intend to provide care or for unexpected events like hospital stays.
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What to Do When You Become the Family Caregiver originally appeared on usnews.com
Update 04/06/23: This piece was previously published at an earlier date and has been updated with new information.
