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Taking care of the caretaker

Q&A: concussions

Recommended reading

Asthma and allergies by the numbers

Children's online

White coat quote

Fact or fiction: "No pain, no gain"

 

Taking care of the caretaker
By Kathy Wallace, RN

My whole life, I've juggled the needs of others. As the oldest of six siblings, it was my job to set a good example. As I grew older, I took on this responsibility at work and with my friends. I learned to listen, read body language and anticipate others' wants and needs. I multi-tasked constantly, with long lists of things to accomplish before I could sleep. If I wanted something done, I did it myself. Without being aware of it, I created a life in which others' needs were more important than my own. I even went into nursing, where a successful career is defined by your ability to give endlessly of yourself.

Taking time to care for myself seemed selfish. Sure, I was tired, had begun to gain weight and my body ached, but I believed that if others were happy and healthy, I was successful. Then, life presented me with an opportunity for change. After a routine mammogram, I heard, "Mrs. Wallace, are you alone? The doctor wants to speak with you." Being a nurse, I immediately read between the lines. In that moment, the world stood still. I wanted to yell, "Stop! I want a do-over. This time, I promise to pay more attention to my own health and well-being. I will sleep more, eat better, exercise, laugh, play and follow my own dreams."

Instantaneously, I went from being the caregiver to being the patient. As a rehabilitation nurse, I'd seen patients in various states of health, like the 16-year-old girl who was unable to speak after a bike accident left her with a brain injury, or a father of six whose stroke left him entirely dependent on others. These patients were at the mercy of caregivers to anticipate and meet their needs, and I'd imagined what it might be like to be them, how hard it was to ask for help and to feel vulnerable. Now I was in their shoes.

Seeing health care through the lens of a patient gave me a whole new perspective. Patients and their families navigate in a foreign world of medical experts. They're expected to trust in the knowledge, skill and focus of their caregivers, which isn't always easy. At times after being diagnosed, I felt like I was a number or procedure, not a person. I understood first-hand the vulnerability of being a patient, and the importance of the attitudes and tone of my caregivers. I was acutely aware whether someone was speaking with me or at me. My trust was built through open and honest communication by the clinicians.

Becoming a patient changed the way I live my life, and the way I care for others in my work. I learned that self-care can't wait until everyone else's needs have been met, otherwise I burn out and I am of no use to anyone. By taking time to exercise, I have more energy, eat healthier, sleep better and, as my family and co-workers can attest, I am a much happier person. After surviving breast cancer, I currently have a clean bill of health, though I'm aware that this—like everything—is transitory. Additionally, I have a voice in my life, and speak up for what I want and need. I've spent a lifetime empowering others to live full, active lives—now I am empowered in mine. When I'm connected with my own thoughts, feelings and behaviors, I'm empowered to care for myself. That gives me the well of energy I need to care for others.

What I've learned has made me a stronger advocate for my patients. As a nurse, I catch only a glimpse of a patient's or family's life, experiences, coping strategies, wants and needs, and I'm honored to be present and bear witness to their unique experience. I listen to them and let them feel heard. I pass on the lesson I was taught by my experience, and encourage parents to take care of themselves—by eating well and sleeping enough—even when they are worried about their child and stressed to their wits' ends.

It was an illusion that I could control life. Now, I embrace life's unknowns, knowing that they're full of possibilities. I have my voice and I'm deciding how I travel through life. I now know that being an excellent nurse, wife, mother, daughter, sister, educator, coach and friend begins with caring for myself. Today, I am on my "to do" list.

Read about other ways Children's staff are taking care of themselves so they can continue to care for patients

Other first-person stories from Children's patients and staff



Recommended reading

Imagine a Rainbow: A Child's Guide for Soothing Pain, by Brenda Miles, PhD This book introduces children to the idea of using their imaginations to cope with pain. Read Saving Gracie.

Ending the Food Fight: Guide Your Child to a Healthy Weight in a Fast Food/ Fake Food World, by David Ludwig, MD, PhD This book, by the director of Children's Hospital Boston's Optimal Weight for Life Program, details a low-glycemic diet for children and a nine-week plan that benefits the entire family. Read Staying lean in a down economy.

Facilitated Communication: The Clinical and Social Phenomenon, by Howard Shane, PhD This book by the director of the Center for Communication Enhancement at Children's explains facilitated communication from an empirical, data-based and clinical perspective. Read Freedom of speech.

Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, by Children's doctor Brian Skotko, MD, MPP, and Susan Levine This book helps teens with a brother or sister with Down syndrome explore feelings and questions about their sibling.



Children's online

Watch our videos
Want to watch videos about the amazing patients and clinicians at Children's Hospital Boston? Visit childrenshospital.org/newsroom/videos. Among our videos:

  • Three patients in Children's Augmentative Communications Program demonstrate the devices that help them communicate (also read the feature article).
  • Is there a benefit to babies watching TV?
  • A research project by Children's and the Museum of Science studies how children learn to recognize faces.
  • A substance abuse specialist talks about why so many parents buy alcohol for their teens.
  • How will the lifting of the embryonic stem cell funding ban affect Children's?

Comment on our patient blog
At 14, Shannon is like most teens. She likes listening to the Jonas Brothers, playing video games and hanging out with her best friend, "Bean." Unlike other kids, though, Shannon lives with a chronic disease called pulmonary hypertension, which affects her heart and lungs. And while that means there are some things Shannon can't do, there's a lot she can do, like mastering karate, starring in a school play and riding her scooter.

If you'd like to read what Shannon has to say about living with a chronic disease, or watch a video of her talking about things like the backpack full of medicine she has to wear everywhere, check out her blog at childrenshospital.org/ShannonsBlog.

Subscribe to our e-newsletter
Interested in watching video clips of our experts discussing children's health issues? Want to read Q&As on everything from substance abuse to cholesterol medicine for kids? Want to read powerful stories about Children's patients and staff?

Then sign up for e-Dream, a monthly e-newsletter from Children's Hospital Boston, one of the world's best hospitals and research centers for children.

Visit childrenshospital.org/signup



Fact or fiction: "No pain, no gain"

Fiction! We in Sports Medicine shudder when we hear this motto. It's the cause of many sports injuries and is particularly troubling when a youth sports coach or parent imparts this advice to a child athlete, sometimes resulting in severe or permanent injury. Ý

Lyle Micheli, MD
Director of Children's Division of Sports Medicine



Q & A

Concussions

A recent flurry of media attention about concussions has heightened awareness about their potentially serious short- and long-term effects—and raised concerns in young athletes, their parents and coaches. Bill Meehan, MD, primary care Sports Medicine fellow at Children's Concussion Clinic, discusses the topic.

Q: Is there genuine cause for worry?
A: Most kids will be fine if their concussions are managed properly and they don't go back into risky situations until they're recovered. Typically, children fully recover from a sports-related concussion within 10 days and will regain normal brain function and do just as well at sports and school as they always did. However, some patients take months to recover completely, and children who get a second concussion before fully recovering from the first are at risk for serious, long-term problems.

Read the rest of the Q&A on concussions at childrenshospital.org/dream



Asthma and allergies by the numbers

3 million: approximate number of children in the United States with food allergies

38% increase in the number of new patients with food allergies seen in Children's Allergy/Immunology Clinic between 1991 and 2005

5 average number of days a child with asthma misses from school each year

14 million total school days lost to asthma each year in United States

411 number of food challenges done to diagnose food allergies at Children's in 2008

Read about Children's efforts to understand and reverse the increase in food allergies

Learn more at childrenshospital.org/allergy


White coat quote

"Hopefully this will end this sad chapter in the search for the cause of autism spectrum disorders."

Leonard Rappaport MD, MS, chief of the Division of Developmental Medicine at Children's Hospital Boston, on a February court finding that there is no link between vaccines and autism.




 

 

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Saving Gracie

Staying lean in a down economy

Freedom of speech

Let's talk about sex

A new face, a new future

Breaking the silence

Trick or treat

The pain puzzle

The teenage brain

Out of the shadows

The new normal

Skin deep

Bridging the gap

Hearts in Ghana

Picky, picky, picky

Deciphering dyslexia

Go-go games

3 is the new 2

Extreme measures