* Names in this story have been changed to respect the privacy of the family.
John and his family of five siblings were no strangers to filling the role of caregiver. The close-knit family had rallied together many years before to support their brother Max, 51, who was diagnosed with schizophrenia as a teen. With family support and the right medical treatment Max has been able to live independently and enjoy a full life. In 2005, however, Max began losing weight and feeling tired and short of breath. After several doctor’s visits, Max was finally diagnosed with idiopathic pulmonary fibrosis (IPF). It marked the start of a long journey to help Max navigate the medical system and find information and support.
Max uses oxygen full time to breathe. He’s been on the lung transplant list for roughly two years. “Max is a bit of a special case,” explains his brother John. “He has a rare blood type and he’s a small man so finding the right set of lungs is proving to be a bit of challenge.” IPF varies from person to person. In Max’s case the disease has progressed fairly slowly. He has been hospitalized about twice a year with lung infections. John says because awareness of IPF is so low, it’s difficult sometimes to communicate Max’s needs to hospital staff when he has a breathing emergency. He suggests patients carry a letter or card from their lung specialist explaining the condition and what to look for. “It would make the treatment process so much smoother to have a simple tool.”
John also advises having a caregiving plan and schedule so others can fill in the gaps. He stresses the importance of setting limits and being realistic about what you can do. He also suggests attending a support group. He and Max attend a lung transplant support group once a month together. The group offers hope and emotional support for both caregivers and patients.
John tries to spend as much time as he can helping Max, taking him to appointments, monitoring his condition and including him in family activities. He is inspired by his brother’s courage and positive outlook. Caregiving is rewarding, but it’s not always easy. Balancing a career and family obligations with the demands of caregiving is sometimes a challenge, John admits. It’s a juggling act that can lead to burnout. “You have to know when to ask for help yourself,” says John. “You don’t have to be a superhero. ”