Physician Bill Craven, who was diagnosed with neuropathy in 2005, says life has taken new turns. One plus, he gets to spend more time with daughters, Ann Clarke and Ellie.
After a bout with the flu, I’m always relieved to resume the hectic pace of family life. I can laugh at my kids’ goofy jokes, cheer at soccer games, and straighten up the house. A seasonal bug is merely a short-term nuisance.
But for parents who are diagnosed with chronic illness, constraints often never let up. Illnesses such as renal disease, multiple sclerosis, and cancer present unwelcome challenges to busy parents. Medical treatments steal time from family. A parent’s physical limitations may make it difficult to do even the simplest activities, as one battles fatigue, stress, guilt, and sometimes, depression.
That's why it's important for families to develop a strong support network when learning to cope with this new reality. Newly diagnosed parents often focus more on their families’ welfare and feelings than on themselves and their condition. Though that’s intuitive, there’s a better place to start, says Angela Hamblin, director of the Good Grief Center in Collierville.
“I tell parents, ‘If you don’t take care of yourself, you’re not going to be able to take care of your children. We have to start with helping you and focusing on your feelings.” She adds, “I try to help parents create a balance. What are your needs? How do you need to get your education, your support, your time out for yourself? How do we balance that with caring for your family?”
One family's experience
For Dr. Bill Craven, others’ needs have always come first. When he practiced family medicine, he cared for patients. When at home, he centered on his wife Lucy and their two young daughters. But five years ago, Bill was forced to address his own health issues. When he experienced a curious numbness in his feet, he made an appointment with his doctor. Bill was diagnosed with neuropathy, a chronic disorder of the peripheral nerves that affects functioning of the hands and feet.
At age 49, Bill started asking the stark questions that occupy anyone coping with a new diagnosis. “What’s going to happen to me? What’s going to happen to my family?”
“My emotions were not hidden from our daughters, who were then ages 8 and 10,” Bill says. “When daddy is sad, they know it.”
Still, the Cravens remained optimistic. “We didn’t think that I would be unable to walk. But my case was more aggressive, and I didn’t respond to all of the medicines they usually use. I have lost some use of my hands and use a wheelchair pretty much full-time.”
Bill’s condition is currently chronic stable. For treatment, he takes IV infusions of immunoglobins in eight-week cycles. To come to terms with his emotions, he sought counseling. “Early on, I talked to a psychologist. It’s not a bad idea if someone facing a chronic illness gets counseling to get tips on how to get through. Sometimes it’s nothing more than spilling about something that makes us angry. We have a quicker trigger.”
He adds, “For whatever reason our Heavenly Father planned it, I can deal with it and find the things to take out of this. I’ve been able to deal with a lot of things by seeing this as a new venture.”
Ways of adapting
The Craven family is strengthened by faith and love. Emotional resilience has helped them adapt to new roles and responsibilities. Since Bill no longer practices medicine, Lucy’s paralegal career has taken on new importance. Bill is discovering the satisfactions of spending more time with his 13- and 15-year-old daughters. He drives carpool and helps with homework. “I’m a ballet dad. Not many men get to stay home with their children.”
Giving their dad support has taught the girls’ empathy and compassion. They load his wheelchair into the van, button his shirts, and remove his socks. They also do their best to keep their rooms clean. While the Cravens have made many changes, they’re not willing to sacrifice time that mother and daughters spend together.
“Lucy is so busy, but she doesn’t want to give up some of the motherly things she does. We try to make sure the girls see her as a mother first and foremost. We make sure she has enough of the riding in the car time with the girls to talk. Our daughters are disappointed when their mother can’t always be there for a program, although Lucy has good bosses who allow her to take time to be there for things the girls are involved in.”
As Bill and Lucy navigate daily routines, each tries to be sensitive to the other’s pressures. “The spouse of a chronically ill person takes on more responsibility,” notes Hamblin. “That can cause resentment and anger as well as anger at the illness. Spouses ask,‘Why is this happening to us?’ It’s key to keep communication open.”
For Bill, a line from the movie Love Story has real meaning. “I never understood, ‘Love is never having to say you’re sorry.’ But now, Lucy and I know we don’t have to apologize and that we don’t mean to hurt each other’s feelings.”
Learn from others
Friends have shown love and support for the Cravens, too. Bill’s Sunday School class and the ministerial staff at Second Presbyterian Church helped him through the tough days that followed the diagnosis, and many friends continue to be on hand.
In addition to relying on friends, many parents find it helpful to talk with others who are dealing with the same diagnosis. Phyllis Johnson was diagnosed with multiple sclerosis (MS) a decade ago when her two boys were in elementary school. Now 52, Phyllis is a peer advocate who shares her story and strategies for managing MS with others who have been newly diagnosed.
“Know your limitations. Know what you can do and what you can’t do. I learned that I can’t go, go, go all the time. I do what I can today and put off other things that can wait until tomorrow,” says Phyllis. She also encourages parents to seek help. “Don’t be afraid to ask,” she says. Find others in your community who have your illness and learn what works for them. “Get educated,” she adds. “Get information from [support] organizations such as National Multiple Sclerosis Society.”
Normalcy helps kids
“When a parent is diagnosed with a chronic illness, there’s grief for the parent and grief felt within the family,” says Hamblin. “For children of chronically ill parents, fear is a common feeling. Something is changing the child’s world,” says Hamblin. It helps if children can have something tangible to hang on to. The Cravens’ oldest daughter still cherishes a stuffed animal her dad gave her when he was in the hospital. It provided comfort during a scary time.
“Be honest, direct, and age-appropriate with children. Otherwise, they’ll come up with something that is much worse than reality. You don’t want the fear to escalate to something more.”
Kids may be afraid to cry in front of their parents and to express what’s on their minds, she adds. “Children want everyone to be happy. Sometimes they blame themselves or fear that they might ‘catch’ the illness. Remind children that they’re loved and are going to be cared for.”
“With a pre-schooler, use very specific language while you play together with a favorite toy or game," she continues. "I might say, ‘Mommy has to go to the doctor. Mommy doesn’t feel well. The doctor wants Mommy to take a lot of naps.” Repetition is important with younger children. They won’t understand everything you’re going through. Their perspective is, ‘All I know is I’m 4 and I want my mom.’"
“Try to maintain something normal and interactive with your child. It might be a hug, a smile, or 15 minutes of play.” Give older children some information about your treatments and an opportunity to ask questions.
Parents may struggle with feelings of guilt when health issues impact family activities. Hamblin says that’s when it’s helpful to be creative. If you’re not up for an outing to the park, share a picnic together at home, or watch your kids practice their soccer moves in the backyard. Bring the park "home" with fun activities.