It’s important to keep track of how your patient or loved one’s idiopathic pulmonary fibrosis (IPF) is progressing. As the caregiver, it is your job to suggest when changes may be necessary. For this reason, constantly ask yourself:
If you have a “team” to help you, it’s important that everyone knows their duties. Your team can include family members, friends of the patient, or other healthcare professionals. Medicine schedules, doctor visits, and keeping a daily record of how the patient feels are just some of the things that team members have to manage.
Also, some caregivers live with a patient. Many do not. If the patient also relies on friends and other professionals for help, make sure their schedules are coordinated. Everyone acting as a caregiver should know the important information about the patient’scurrent treatment.
As IPF progresses, the patient’s treatment plan might change. Be sure to ask questions every step of the way. Discuss whatever you think may be important. Talking about the future is easier if you address these concerns at every visit with the doctor. Remember to write down your questions before each visit.
You or the patient should bring their journal to each visit. This will help the doctor see how the patient is doing while on OFEV® (nintedanib) treatment. Working together will allow the doctor to learn what is important to both you and the patient.
Friends and family members may offer to help you take care of the patient. If they do, accept their help. You can ask each person to help with a task that matches his or her skills. If you have a friend who is a good cook, ask him or her for a homemade meal. If another friend is handy with repairs, ask him or her to fix anything around the house that the patient needs.
Thinking that everything is “up to you” can quickly make you feel overwhelmed. Even a short break can help you feel better and ready to help your patient again.