If you have a child, spouse or other family member with a bleeding disorder, you know firsthand that being a caregiver can be emotionally and physically taxing.
“Out of love and obligation, a parent or a wife or husband steps in and does everything that’s needed,” says Cathy Tiggs, MSSA, LISW, an adult and pediatric social worker at University Hospitals Cleveland Medical Center. “It’s almost like a second job. They always put in overtime, and they’re never off-duty.”
Latasha Paschal thought she knew what to expect when her baby son was diagnosed with a bleeding disorder, because all three of her brothers have hemophilia. But nothing prepared her for the challenges her son Amilion, age 4, would face. He had a stroke when he was 4 months old and another at 10 months, after surgery to place a shunt in his brain.
The Cleveland mother’s days now revolve around Amilion’s medication schedule and her need to watch his every move. “He can’t play any contact sport,” she says. “I have an 8-year-old son, also, who plays football. Amilion basically wants to follow after him, but he can’t. And because of the stroke, his left side is weak, so he can’t really run and he can’t ride a bike. I can’t just let him go outside and play. I have to be there watching him 24/7.”
Being a full-time caregiver for someone with a medical condition or chronic illness can take a severe toll on a person’s own physical and emotional health. The chronic stress of caring for another person releases a cascade of hormones such as cortisol and adrenaline that can lead to irritability, headaches and other pain, digestive ills and a weakened immune system.
“It’s like your foot is on the gas pedal all day long, and that leads to physical, emotional and mental exhaustion,” says the Rev. Julie Allen Berger, a healthcare chaplain at Barnes-Jewish Hospital in St. Louis who runs sessions on caregiver burnout. In fact, a 2017 study in The Journal of Haemophilia Practice found that parents of children with bleeding disorders who perceived their caregiving role as particularly burdensome reported higher levels of physical pain and poorer social functioning.
Unfortunately, caregivers often don’t recognize that they’re burned out, much less take steps to lessen their load. “Caregivers won’t take time off for themselves. They take time off to go to doctor appointments, run errands or clean the house, but not to put their feet up and take a breath or go for a walk,” says Damia Dillard, LCSW, program manager of the Hemostasis and Thrombosis Center of UC Davis Medical Center in Sacramento, California. “But if you can’t take care of yourself, you can’t take care of someone else.”
Your Caregiver Care Tip Sheet
How can you avoid or recover from caregiver burnout? These measures can help.
Take stock of yourself
Since burnout often goes unnoticed, the first step is to do a self-check. It might be hard to take the time to self-reflect honestly and without judgment, but this step is crucial in starting to find some balance and get support.
“Once somebody’s able to do a true self-assessment, it allows them to then process through the options,” says social worker Cathy Tiggs.
Also be alert to the signs of burnout, which include fatigue, sleeping problems, feeling overwhelmed or anxious, unexplained aches and pains, weight gain, frequent illness and social isolation.
• In what ways am I not positively impacting my family?
• Am I always moody?
• Am I always short and snappy with my remarks and my feedback?
• Am I able to get everything done, or are there a lot of things left untouched because I just can’t handle the load?
Put on your oxygen mask first
Just like any role or job, you need occasional breaks. Give yourself permission to go off the clock, “even if it’s just taking a walk or having a cup of coffee by yourself for a half-hour,” Tiggs says. Then work up to a movie or a night out with friends. “Once you’re used to getting a babysitter and to trusting somebody for an hour or half-hour, the rest comes a little bit easier,” she says.
Latasha Paschal was used to staying home most of the time when her son Amilion was younger. But now, she says, “in order not to feel overwhelmed, I try to get out of the house a bit more.” She relies on her mother to look after her son.
Allow all of your feelings
“Part of the stress of caregiving is at times feeling anger and resentment about it—‘I wish it didn’t have to be this way’—and then right after that, feeling guilty for having those thoughts,” the Rev. Julie Allen Berger says. It’s normal to have a range of feelings, she says. Try not to beat yourself up over the negative ones.
“When you’re stressed out and your breathing is shallow, stop and inhale deeply and exhale deeply,” Berger says. “It really helps to de-stress in the moment.” Regularly practicing meditation, guided imagery or other calming techniques can help in the long term.
A good way to counter the negative effects of stress in the body is to get sweaty. “Exercise has been a very good way to deal,” says Joe Mickeliunas, of Omaha, Nebraska. His 2-year-old son, Elliott, has both a bleeding disorder and a neurological disorder that causes developmental delays, seizures and other issues. “It helps me to feel better on a daily basis,” Mickeliunas says of his runs and high-intensity workouts. Some caregivers do activities like yoga and tai chi, which do double duty, exercising the body and quieting the mind.
Seek the company of others
One of the best ways to prevail against burnout is to enlist the support of others, particularly those facing the same challenges as you. “Just to be around others like you is a great feeling, and it builds that sense of community that makes it not seem as tough,” Mickeliunas says.
He and his wife, Jenny, have become friends with parents they’ve met at National Hemophilia Foundation (NHF) conferences. Jenny also connects with other special needs moms on Instagram, posting stories of how they manage parts of their children’s care. “That’s been a great way for her to stay connected and feel less alone,” Mickeliunas says. Women’s retreats sponsored by NHF chapters and others typically include women with bleeding disorders and caregivers, offering another way for female caregivers to forge bonds of support, Tiggs says.
Talk to a professional
Speaking with a social worker or counselor can help you strengthen your inner resources. “Having a child with a bleeding disorder and other problems created anxiety and fears for me,” Mickeliunas says. “It has been really helpful to talk to someone who could help me.”
With the right tools and the support of others, caregiving should get easier. “Discover your new normal and find a balance in caring for your child and caring for yourself,” Mickeliunas advises. “If you put all your effort into one, then the other side of it is going to struggle.”
Compassion Fatigue: When Providers Burn Out
Caregivers aren’t alone in experiencing debilitating stress. Care providers exposed to the strain and suffering of others can experience what is known as compassion fatigue. “Whether they know it or not, those in the helping professions can absorb some of the negative energy that comes with witnessing people’s difficult experiences,” says healthcare chaplain Julie Allen Berger. Common symptoms are sleeplessness, irritability, overeating, alcohol and drug abuse, absenteeism and the feeling of being on high alert all the time.
Like caregivers, providers can benefit from exercise, self-soothing techniques like deep breathing and relaxation, and social support. Berger recommends recruiting one or two people to be a sounding board when times get tough. “Say, ‘I’d like to recruit you to be a good listener for me when I need to talk about how hard something is,’” Berger suggests. “You’re not asking that person to fix it or to drop everything when you call—just listen. Offer to do the same in return.”