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Finding Strength in Caregiving
Faced with a life crisis, people can experience a positive outcome known as post-traumatic growth.
By Dr. Sanjay Gupta
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Jane Northrop remembers the shock of learning her daughter Nicole had a congenital heart defect. “It felt like I was kicked in the gut,” she said. “I couldn’t breathe.” Four years later, Nicole’s condition and the responsibility of being her primary caregiver can still be overwhelming. But Northrop has also discovered positive changes in herself and how she deals with her daughter’s condition.
“I have become very outspoken,” said Northrop. “I knew her whole life that something wasn’t right, and I feel that I wasn’t aggressive enough with her doctors to really get answers. I just kept believing what they were telling me, which was that she was healthy. But now if there’s something I don’t think is right, I’m going to question it.”
Nicole, 19, was born with two holes in her heart between her right and left ventricles, known as ventricular septal defect; but the defect was not diagnosed until she was 15. As a result, she developed pulmonary arterial hypertension and Eisenmenger syndrome, which affects blood flow from the heart to the lungs.
Today, Nicole is severely limited by her condition. She takes online art classes and hopes to become a children’s book illustrator, but she is too weak to work outside the home and needs to be on oxygen around the clock.
“It took me two years to really know that this was not a nightmare, that it was real life,” said Northrop, 52, who has made it a mission to keep informed and be an advocate for Nicole and others like her.
“Now, I will speak out any chance that I get about her diagnosis, about her misdiagnosis, about this disease that nobody’s heard of,” she said. In 2011, she started a blog “to educate people about Nicole’s illness and what she goes through every day.”
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A life crisis or traumatic event can cause unimaginable stress and sadness, but it can also lead to what’s known as post-traumatic growth.
In a recent study, researchers surveyed 270 parents who are caregivers to severely ill children. The participants reported personal, professional, and financial hardships associated with their children’s illnesses, but most also said there were some positive outcomes.
The parents’ responses were measured using the Post-Traumatic Growth Inventory (PTGI), a questionnaire to assess the positive impact of negative events. The PTGI measures factors such as personal growth and strength, appreciation of life, relating to others, and spiritual change.
Lead researcher Susan Cadell, professor at the School of Social Work at Renison University College at the University of Waterloo in Ontario, said the results are significant “because caregiving is ongoing. It’s not an event in the past. So it shows that even when people are in the throes of the stressful experience, they can still experience something positive.”
Denise M. Brown, author of several books on caregiving and founder of caregiving.com, isn’t surprised. “No one tells you how to be a caregiver. You just have to figure it out,” she said. “As you do, you become more resilient, your self-confidence increases, and you become better at solving problems. I often think to myself, ‘If I need help with something, I’m going to ask a family caregiver.’ ”
Brown met Northrop, who blogs for caregiving.com, shortly after Nicole’s diagnosis. At the time, Northrop, who lives in Orlando, Fla., couldn’t keep up with all the paperwork related to her daughter’s healthcare.
“It was everywhere,” said Brown. “The thought of organizing it was just too much for her to handle.” Three years later, Northrop presented a session on caregiving.com about organizing medical paperwork.
“As a caregiver, you’re forced to face your worst fears, and because you do, you become this stronger person who can handle things you never thought you could,” said Brown. “That’s what happened to Jane.”
Post-traumatic growth doesn’t mean a caregiver isn’t feeling pain and suffering. Here are six practical ways to help you find something positive when coping with a challenging, stressful situation:
Keep a journal.Writing down your experiences will give you a record of how far you’ve come and how much you’ve accomplished. “A journal can be the record of your transformation,” said Brown. “Even when no one’s helping you, even if the day lasts 20 hours, you did it. You made it through. And a journal will help you remember that.”
Picture good times.Sometimes we focus so much on the negative aspects of caregiving that we overlook the happy moments, according to Kim Miller, a clinical services consultant at SeniorBridge, a national care management and homecare organization, in Fort Lauderdale, Fla. Miller was a caregiver for her aunt, who died of pancreatic cancer six years ago. She recommends snapping photos of special moments like holidays and birthdays. “Having a visual of the good moments can then help the bad moments – when you’re all stressed out – fade away a little bit,” Miller said.
Have a personal space.Brown suggests setting up a small space in your home and filling it with things that matter to you. “It can be pictures of your loved ones, books, movies, artwork. Whatever it is, it will help you avoid getting lost in the caregiving process by keeping something for yourself,” she said.
Don’t go it alone.“By the time most people ask for help, they are completely over-stressed,” said Miller. If you start feeling caregiver burnout, turn to family members or others who can help out. “I recommend at least consulting a care manager, even if you’re not ready to hire a caregiver, because they can help lay out a plan for you,” Miller said.
Pace yourself.It’s important to carve out some “me time” and take breaks. “Start slowly,” Brown said. “If all you can take is a 10-minute break at first, do that. Then the next time take a 20-minute break, then an hour, and gradually increase it to what you feel comfortable with.”
Seek out support.Northrop is co-leader of a local support group for caregivers, which gives her a sense of stability. “Sometimes my life feels so out of control,” she said, “and this is the only thing that I can do to continue to keep learning about and teach others about this illness.” As Brown points out, “caregiving can be such a lonely, isolated process. Joining or leading a support group can give you a sense of community and help build on the skills you’re already acquiring from the caregiving experience.”
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