Serving as a caregiver for someone with idiopathic pulmonary fibrosis (IPF) means understanding the disease and the progression of IPF. This knowledge will give you insight into what to expect while caring for them. But it is also important for the patient to learn about IPF. When patients and caregivers are on the same page, it is easier to make decisions. It’s also easier to develop a plan for the future when you both know about the disease.
Learning about IPF should include the following:
- How the disease affects the body. This is also known as the course of the disease
- What to expect as IPF progresses over time
- Disease treatment options. This can include finding out about medicines and possibly taking part in clinical trials to test new medicines
Learning about IPF can help you and the patient understand how the disease will affect them in the future. It will also let patients set realistic goals while dealing with their IPF.
The goal of supportive care is simple: to ensure the patient’s comfort.
Some guidelines include:
- Sympathize with the patient’s situation. Your patience and understanding can go a long way to helping your loved one
- Be specific about drugs, dosing, and timing. Having a routine gives a patient a schedule to follow. It also reduces the chances of missing a dose. This is especially true if the patient is taking multiple medicines
- Consider age, other health problems, and adverse side effects. Be prepared to address a variety of health issues
- Make one change at a time. Too much change or uncertainty can make a patient anxious
- Make changes to the plan for care as situations change. Stay flexible and open to new ideas and ways to do things
Because you are closest to the person with IPF, you are in the best position to speak on his or her behalf. Ask difficult questions that the patient needs to know the answers to but has trouble asking. Even from the beginning, you will probably be the one who has the best idea of the patient’s condition. You may need to help talk with different doctors and share important health information. Don’t forget that you have a very important role on the healthcare team.
Research shows that pulmonary rehabilitation can have a positive effect on the patient. Pulmonary rehabilitation is also known as pulmonary rehab, or PR. A pulmonary rehab program is designed to help people with IPF. It does this by focusing on things like exercise, eating healthy foods, counseling, and learning breathing strategies to help them with their IPF.
PR is usually an outpatient program, though some people can receive it in their homes.