When Peter Rosenberger was 22 years old, he fell in love “with a woman with a broken body.”
At the time, Gracie Parker had undergone 20 surgeries after a car wreck.
“I didn’t know what it was like to be in a relationship with someone who was hurt. I just knew I loved her and wanted to care for her,” he says. “I took on the helm of something that damn near crushed me.”
Over the 3-plus decades they’ve been married, Peter has seen Gracie through 60 more surgeries, including a double leg amputation below the knee. Along the way, he’s learned a lot about himself and what it means to be a caregiver.
“If you can fail at it, I’ve failed at it,” says Rosenberger, who hosts the “Hope for the Caregiver” radio show from Ennis, MT. “I’m still in the thick of it, but we’ve carved out a life in it.
“Being a caregiver will consume every part of your life if you let it. And even if you don’t let it, it will still try.”
Lonely, but Not Alone
More than 43 million men and women in the U.S. are unpaid caregivers. But whether you care for a child, spouse, parent, or other relative, it’s common to feel alone.
When his father was diagnosed with Alzheimer’s, Prentice Claud, 65, bought a house with a downstairs apartment, moved his parents in, and continued to work full-time as a hairstylist and salon owner in Nashville.
The light, chatty atmosphere at work offset challenges at home.
“From day to day, I didn’t know how my father was going to act,” Claud says. “I learned what to do, what not to do, and what set him off.”
A year and a half after his father died, Claud’s mother, now 97, showed her first signs of Alzheimer’s.
“At Thanksgiving dinner, she asked how I made the turkey taste so good. I said, ‘I made it the way you always made it.’ She said she’d never made a turkey in her life. That’s when I knew.”
Claud’s goal is to keep his mother out of a nursing home. But the stress of salon ownership and full-time caregiving was too much.
“I had to let go of one, and I wasn’t going to let go of her,” he says.
Claud sold his business and retired. Instead of coloring hair and joking with clients, he bathes, dresses, cleans, and cooks for a woman who can’t remember his name.
“I miss being at the shop and socializing a lot,” he says. “I don’t get to enjoy my retirement right now, and can’t get on with my personal life because this is so involved. But in my heart, I know I’m doing what’s right.”
Feelings and Food
Like most caregivers, Julie Rutter can describe what she does for her daughter in one word: Everything.
Eight-year-old Emily has type 2 spinal muscular atrophy (SMA), a form of muscular dystrophy. She has never walked or stood up on her own.
“At this stage, I feel more like a caregiver than a parent,” says Rutter, who has three older boys. “I lift her in and out of her wheelchair, take her to the bathroom every time she has to go, brush her teeth, comb her hair, give her a bath, and take her to multiple doctor appointments and therapies a week.”
“Everything” also includes emotional support.
Emily can’t do gymnastics or ballet the same way other girls her age can. She gets left out of slumber parties because other parents aren’t comfortable lifting her, and Emily’s not comfortable letting other people do it.
“Everyone has ‘why me’ moments, but Emily has a lot of them,” Rutter says. “I feel pressure to always be positive for her, but I don’t always feel that way in my heart.
“As an emotional eater, I’ll sometimes eat away the fear, pain, and hurt. She’s got her ‘why me’s’ and I’ve got mine.”
Rosenberger knows the connection between comfort food and caregiving all too well.
“I gained so much weight, my picture fell off the wall,” he jokes. “But you don’t tell a caregiver, ‘Hey, you need to lose weight.’ They know they need to lose weight. It’s just that they have a greater weight on their heart.”
The Next Right Thing
Take care of yourself: These are the four most frustrating words in caregiving.
“When someone tells me to take care of myself, I feel like it’s one more thing to add to my list,” says Eboni Green, PhD, a registered nurse and co-founder of Caregiver Support Services.
Green has been a caregiver for her daughter and mother-in-law. She now cares for her husband’s grandmother, who lives independently in a facility near Green’s home in Omaha, NE.
Even as a health care professional, Green finds herself so consumed by caregiving, she loses touch with her own needs. Rosenberger says it’s the result of the three I’s: isolation, and loss of independence and identity.
“Sometimes I think I’m doing a good job of self-care, then a crisis comes up,” Green says. “Because my situation is so unstable, I try to change one or two things, like drinking water instead of pop, or making time for a hot bath.”
Self-care starts with the next right thing. Take a walk. Have a bowl of soup. Call a friend. Read a book. Clean the fridge.
Whatever makes you feel good and productive is enough.
“I can’t fight what happened to my wife. It’s too big for me to fix, and that’s not my job,” Rosenberger says. “The goal isn’t to make it better. The goal is to for me to be better: calmer, focused, and healthy, no matter what’s going on around me.
“I won’t say I’ve made peace with caregiving, but I try to do the best I can with what I have.”