There’s supporting a loved one, and then there’s taking on the mantle of caregiver. Becoming a caregiver for a patient with interstitial pulmonary fibrosis, or IPF, is a decision you should make carefully. Research has shown that caregiving can take a major toll on both your relationship with your patient and on your own mental, emotional and physical health.
Here are four things you need to do to become a responsible caregiver for a loved one with IPF.
Educate yourself about IPF
There are hundreds of chronic illnesses, and they’re all unique. Interstitial pulmonary fibrosis is no different. Even if you have a chronic illness yourself or you’ve dealt with a lung disease like asthma before, you need to familiarize yourself with what IPF does to the body and how best to cope with it and treat its symptoms.
Do your best to get your IPF education from someone other than your patient. While they can tell you the specifics of their routine, their treatment plan and the quirks of their experience, the burden of your general knowledge shouldn’t fall on them. They’ve got enough to be dealing with. Instead, look for other resources. Your patient’s healthcare team and national disease-specific organizations and foundations are treasure troves of information.
As a caregiver, you should also look into related information, like nutrition, exercise and environmental factors, and basic medical care like CPR and first aid.
Establish your caregiving responsibilities
Division of labor is important in any working relationship, whether it’s in the office or in the home. As a caregiver, you need to remember that this is a working relationship. To start off on the right foot, sit down with your patient to create a comprehensive list of duties you’ll be fulfilling. It might also be useful to meet with any other caregivers, whether you’ll be working together or not, as well as your patient’s healthcare team.
Here’s a short list of questions to guide your conversation:
- What housekeeping tasks can I take off your plate? (For example, vacuuming, which can kick up dust; bathrooms, which often involve toxic fumes)
- What parts of your daily routine are becoming a struggle? (e.g.–Is it hard for you to make the bed? Carry laundry upstairs?)
- What weekly appointments are on your calendar? (doctor’s appointments, activities with friends, exercise classes)
- What’s your treatment regimen? (e.g., breathing exercises to strengthen the lungs)
- What’s the best way to help you when you’re feeling ___?
Maintain your role as a loved one
No matter how close you are with your loved one, becoming their caregiver will strain your relationship. Whether you’re a partner, a grown child, another family member or a friend, it’s difficult to keep that role separate from your role as a caregiver.
To prevent losing that closeness—and the affection that’s built up between the two of you over the years—you need to create boundaries between your two distinct roles as loved one and caregiver. Set aside time that’s just for being the loved one. Avoid talking about IPF, doctor’s appointments and caregiving tasks. And, if necessary, someone else should take on the caregiver duties your IPF patient requires during your loved-one time.
Look into becoming a paid caregiver
Over the years, research has shown that in-home caregiving is more cost-effective than assisted living or nursing home facilities. In most cases, it’s also better for the patient. In-home caregivers allow most people with progressive chronic diseases (as well as age-related illnesses) to remain independent and active longer than care centers.
Thanks to these findings, many local organizations and governmental entities are putting more funding into in-home caregivers. That means that even if you’re caring for a loved one, it’s possible that you qualify to earn wages for the work you do as a caregiver.
How can you find out if you qualify? The first step is to contact your local Medicaid office. Each state tends to have different eligibility requirements, so representatives there will be able to give you the 411 you need to get started. They should also be able to point you toward other local community-based support and funding organizations.
Even if you don’t qualify for this sort of funding, you might be able to get additional benefits—including paid family leave—through your workplace. A human resources representative should be able to take you through your options in detail.
The most important thing to remember as you consider becoming a caregiver for someone with IPF is that there are options available to you—more options than you’re probably aware of. Don’t be shy about asking what you (and your loved one) qualify for, and what local and national resources are available for the disease in question, as well as senior care and disability assistance.