Lifenhanced: FEATURED ARTICLE
Caring for the Caregiver
A Caregiver’s Job: Demanding and Rewarding
Almost anyone who has ever been in the role of caregiver will likely agree that it can be one of the most rewarding and one of the most physically, mentally, and emotionally challenging things they have done.
Whether you’re a family caregiver or a paid professional, caring for others can and often does take its toll – unless that caregiver recognizes the importance of not only caring for their loved one or client, but themselves.
Dannielle Vincent and Laurie Baturin can both safely say they know firsthand what it means to be a caregiver for a loved one, as well as all the challenges it demands and the rewards it includes.
For roughly the last seven years, Dannielle has helped care for and treat her husband Lee’s diabetes. During that time, Lee has had a dozen surgeries and ultimately ended up having a transmetatarsal amputation on each foot. “I continued to do his wound care after every surgery,” she says.
Laurie’s oldest son was born 22 years ago with failure to thrive and apnea. He spent the first two weeks of his life in the NICU and was on a respiratory monitor until he was three months old. Her 17-year-old son has quadriplegia with global developmental delays. She also recently became the guardian of a 13-month-old boy who was born with a drug addiction and was severely beaten by his father at two months old. “Just learning you have a child with life challenges is one of the most difficult things you’ll hear as a parent,” Laurie says.
Being a caregiver for a loved one is only one role on the list of many.
“I’m a wife, mom, secretary, accountant, cheerleader, laborer, artist, designer, small business owner, customer service rep, and team leader for my son’s IEP team,” Dannielle says, in addition to caring for Lee. “I manage all the money for our household and, since Lee’s amputation, he’s had some bad days, so I do what I can to help him stay positive. Mostly I make him laugh, because that’s the best medicine.”
After working for a grocery store that closed, Dannielle, a self-taught artist, decided to start her own business. She designs and handcrafts folded book art. “Major perks are I get to make my own hours, be home for Lee, and I’m able to generate income to help provide for my family, not to mention that creating folded book art is very zen for me.”
Laurie was working as a substitute special needs teacher until her youngest came to live with her and her sons. Now she’s a licensed foster parent. “I’m consumed with the lives of these three children, and I would not have it any other way,” she says.
Rewards and Challenges
What makes Dannielle’s job as her husband’s caregiver challenging is working long stretches of time without a break. “I adore my husband, but being around him constantly can drive me nuts,” she says. “If I’m not having a good day, I often feel as if I have to put on a happy face so that my attitude doesn’t affect Lee’s. I know things are already hard for him, and I don’t want to add to it. Always having to be the positive one in the relationship is definitely a challenge.”
By the same token, Dannielle says she feels lucky she can stay home with her husband, create her artwork, and raise her family. “I got to experience the sheer joy on Lee’s face when he took his first step with his very first prosthetic limb,” she says. “Through all the hardship, his smile is what makes me want to continue to be his caregiver.”
Laurie says as the parent of a child with profound limitations and a child with a traumatic brain injury, milestones are measured differently from those children who don’t have disabilities. “When your child has developmental delays, a hand gesture to say hello at the age of 12 is a victory and celebrated with balloons,” Laurie says. “When a typical child says hello to my child—a genuine, heartfelt hello—this is a victory.”
A Marathon, Not a Sprint
One of the most important things any caregiver can do as they care for the ones they love is take care of themselves.
Caregiving is typically a marathon, not a sprint, says Taffy Bowman, CPO, practitioner for Danniel and Lee at the Ability Limerick, Pennsylvania office. “It’s important for caregivers to keep an accurate pulse on their own needs and what is necessary for them to sustain their role in a positive and effective way,” Taffy says.
Tyler Cook, MPO, CPO, provides care for Laurie and her sons out of Ability’s office in Hagerstown, Maryland. “Caregivers have to maintain their health if they’re going to continue to provide good care for their kids,” he says. One good analogy is of flight attendants instructing passengers on the proper use of oxygen masks, he says. “Help yourself first, then those around you.”
Dannielle takes her respite to heart. Once a month she has a night out with the girls—and men are not allowed, she jokes. “We’ll window shop at the local antique stores and flea markets.” Dannielle is also an avid gamer. “Gaming is a great way to get out your frustrations,” she says.
Perhaps what Dannielle loves most when she takes time for herself is listening to music. “I love music,” she says. “Every single book art piece I’ve created has been infused with my singing.” Dannielle says she doesn’t sing well, but that’s never stopped her. “Music is always able to lift me up when I’m feeling down.”
Laurie says networking with other families with special needs and foster parents is a benefit for her. “The only place I have found true and loving friendships is in these communities,” she says. “We live in a different place than the families with typical children, and I often can’t relate to their lives. With the special needs and foster community, we love and help each other in ways that put the children first.”
Care at Ability P&O
While there is a closer Ability office, Dannielle and Lee happily make the 35-minute drive to Limerick to work with Taffy after she transferred to the Limerick location.
“Taffy listens to everything that we say and responds in easy to understand terms and makes sure we understand what adjustments need to be made,” Dannielle says. “I’ve told her about some of the issues Lee has had at home with mobility and his prosthesis, and she’ll make an adjustment right then.”
Laurie says she likes going to Ability P&O for care. “Not only is the staff wonderful, compassionate and helpful, I’ve met some of the sweetest people in the waiting room,” she says.
For Laurie’s youngest son, Hunter, Tyler provides care for his cranial molding orthosis; and for her middle son, Alex, Tyler provides care for his AFOs and WHFOs. “Laurie is always pleasant to be around,” he says. “She never shows up to our office without a smile.”
Dannielle says she went through a phase where she doubted her own skills, so they tried in-home nursing care for Lee’s wound management. “After watching a few nurses do exactly what I’d been doing, I regained that confidence,” says Dannielle, who usually ended up having to wrap Lee’s wound when the nurses were there because of his foot’s odd shape.
Taffy says from her first meeting with Dannielle that she impressed her as an “intelligent, respectful, caring and engaging advocate” for her husband’s medical care. “She has had a consistent front-row seat through many years of various ups and downs to the point that if there were a medical degree for caregivers, she would have earned it by now,” Taffy says. Until Lee can qualify for Medicare in November, the family hasn’t explored other resources, Dannielle says.
Finding resources can be complicated, says Laurie. “Twenty-two years ago, with my first son and 17 years ago with my second, there was no such thing as Facebook, Google, and other doors the Internet has opened up for networking,” Laurie says. “I look back now and wonder how I did it all by myself.”
In Maryland, Laurie says organizations such as Casey Cares and Make a Wish provide a respite from the stress of caregiving. She has also found that while the local department of aging can be as helpful as various religious institutions, her most valuable allies are the physicians who care for her sons. “We share thoughts and treatments and are not afraid to challenge each other,” she says. “For this reason, when I need a letter from the doctor, it is done quickly and efficiently.”