A Helpful Guide for Caregivers of Those with a Life-Threatening Lung Disease
Being a caregiver means shouldering a lot of responsibility; caring for yourself is critical, too
Idiopathic pulmonary fibrosis (IPF) is a serious lung disease that gets worse over time and has no known cause or cure. Its symptoms include shortness of breath and a persistent dry cough. Though the symptoms of IPF are common and may be caused by something else, it’s important to speak with a doctor if you are experiencing them. When Ginger’s symptoms turned out to be IPF, her son, Kenny, and her daughter-in-law, Megan, stepped in to assist her.
“It was a shock to learn about the seriousness of my mom’s diagnosis. As her caregivers, my wife and I feel our role in her IPF journey is to help her with the things she can’t do and encourage her to do the things she can and keep her spirits up,” Kenny says. “We accompany her to her appointments, remind her to keep using her oxygen, do her pulmonary rehab exercises, stay connected with her friends and lean on her support group.”
Since becoming caregivers, Kenny and Megan have learned a lot through caring for Ginger, including:
1. The little things can make a big difference.
Sometimes, simple things like being an extra set of ears at a doctor appointment, keeping track of appointments and medical records, ensuring that your loved one eats before they take their medicine or making them laugh is what they need most. Even when it’s difficult, you can help your loved one manage their disease and find the strength to face it day to day. Kenny, Megan and Ginger discuss her care as a family, so they can help her make decisions about her treatment and health.
Since becoming caregivers, Kenny and Megan have learned a lot through caring for Ginger, including:
1. The little things can make a big difference.
Sometimes, simple things like being an extra set of ears at a doctor appointment, keeping track of appointments and medical records, ensuring that your loved one eats before they take their medicine or making them laugh is what they need most. Even when it’s difficult, you can help your loved one manage their disease and find the strength to face it day to day. Kenny, Megan and Ginger discuss her care as a family, so they can help her make decisions about her treatment and health.
2. Sometimes just being there is enough.
Often, people with serious diseases don’t want to be a burden, so let your loved one know you’re willing to be their outlet to express themselves without judgment. When Ginger is feeling down, Kenny and Megan remind her how strong she is. It can be hard to accept that you can’t take your loved one’s struggles away or cheer them up every time they are down. But don’t underestimate the comfort you provide simply by being there and listening.
3. Care for yourself, so you can care for your loved one.
It may seem selfish to enjoy yourself when someone you love is suffering, but taking time for yourself is essential. Caregiving can deplete physical, emotional and psychological energy.
- Stay connected and give yourself a break: Have coffee with a friend, schedule a date night with your spouse, or set aside time to check in with other loved ones. You can also find an outlet that takes your mind off the demands of caregiving, like taking a class, learning to play cards or joining a choir or community group.
- Keep active: Go for a bike ride or walk. Your physical health is important, too.
- Consider a support group: Support groups may be helpful for your loved one and also for you. There are online resources and in-person meetings through which you can connect with other caregivers and exchange tips and stories.
4. Offer a little push when necessary.
When the one you’re caring for feels frustrated by their chronic disease, they might need a little push in the right direction. If your loved one is living with IPF, for example, support them by encouraging them to find and stick with a treatment plan, go to a support group or pulmonary rehab and bring along medical equipment, even if it may be a hassle. Kenny and Megan note they’ve sometimes had to remind Ginger that she needs to bring her oxygen tank on outings.
5. Accept that you aren’t perfect, and find your support.
There are a lot of unknowns that can make you feel uncertain if you are a first-time caregiver for someone who is seriously ill. Do the best you can; you’ll learn as you go. Kenny’s advice for anyone else at the beginning stages of the caregiving journey is to find family, friends, religion or support groups that give you strength.
