Prioritizing Self-care

For those with a debilitating disease, a caregiver is an essential part of life, often sacrificing their own needs out of devotion to a family member or loved one. November’s National Family Caregivers Month allows us to share appreciation for those unsung heroes who make a difference for patients every day. I am sharing my story as a pulmonary fibrosis (PF) caregiver and Pulmonary Fibrosis Foundation (PFF) Ambassador to shine a light on the disease and inspire families as they navigate a difficult diagnosis.

My PF Story and Finding Support

In 2009, my husband Steve was diagnosed with PF, a life-threatening disease that causes scarring in the lungs and worsens over time. PF can significantly affect patients’ quality of life. Symptoms such as shortness of breath, chronic cough, and fatigue can be draining, and many patients may become breathless while taking part in everyday activities such as showering or eating. As a result, patients may require a caregiver and a wider support network.

Once we understood the severity of Steve’s diagnosis, I had to manage my fear for our future to ensure I could support him with the best care possible. We became involved with the Idaho Pulmonary Fibrosis Support Group to learn from others and talk about the intricacies of PF and how isolating it could be. The group became a part of our family and gave us hope on how to best live with the disease, so during that time, “living with PF rather than dying from PF” became our mantra.

When Steve passed away from PF in October 2015, the friendships built within our group made me grateful for the support I received. I was especially thankful to continue our important work and honor Steve’s memory after I became the group’s leader.

My Advice for Caregivers

While some days are more difficult than others, many caregivers share similar fears and frustrations, so knowing we are not alone can be comforting. I found relief in talking with others who were experiencing this disease, and I have found healing from my involvement in the PF community.

Being a caregiver includes doing what needs to be done each day to care for your loved one and yourself. I found the following tips to be immensely helpful to be an effective caregiver:

• Take care of yourself: The most important lesson I learned was that I needed to take care of myself to care for Steve. Asking for help when needed – and accepting help when offered – is normal. Participating in activities that reduce stress and promote relaxation are crucial to your well-being.

• Take an active role: Being actively involved in your loved one’s diagnostic journey and treatment regimen may help alleviate anxiety and frustration for both of you. I encourage caregivers to take notes and ask questions during their loved ones’ doctor appointments; know their medications and how to operate any medical equipment; and help them maintain healthy diets and exercise programs.

• Take precautions: Help prevent respiratory infections by ensuring everybody in your home receives the COVID-19 vaccine, gets their yearly flu shot, washes their hands frequently, and knows when to keep loved ones away from environments detrimental to their health.

For more advice for caregivers, visit the PFF website here.

Making a Difference

PF affects more than 250,000 Americans and is largely unknown, so I knew I had to do something more to change that. In March 2021, a group of advocates, myself included, held virtual meetings with legislators to drive awareness and research funding to lead the way to find a cure.

I’m also actively involved during September’s Pulmonary Fibrosis Awareness Month, which culminates with an annual PFF Walk. When it was established, our group expanded the PFF’s footprint by bringing an annual Community Walk to Boise, which we call Breath-a-Palooza. It was organized in memory of Steve and others who fought hard but ultimately succumbed to the effects of PF. To learn more about the PFF Walk, visit pffwalk.org.

Helpful Resources

In recognition of National Family Caregivers Month, I encourage caregivers to utilize the helpful resources, ongoing research, and support the PFF offers, which includes nationwide support groups, a PFF Help Center, PFF Care Center Network, information guides and checklists, ongoing webinars, and more. You can view inspiring videos from patients and caregivers on the PFF’s YouTube channel, including “Words of Wisdom” for caregivers.

While Steve is no longer with us, I work to keep his spirit alive by advocating for more disease awareness and hope to provide support to other caregivers.

To learn more about PF, visit AboutPF.org.