Practical support ideas to help a loved one with PAH

Pulmonary arterial hypertension (PAH) is a rare disorder that increases blood pressure in the lungs and puts strain on the right side of the heart. While PAH affects everyone a bit differently, the condition interferes with the body’s ability to pump blood and deliver oxygen. This translates to shortness of breath, fatigue, lower tolerance for physical activity, brain fog, and other symptoms that affect a person’s daily functioning.

As a caregiver, you are in a position to play an important role in providing emotional and social support to a loved one with PAH. You are also in a position to provide practical support—help with daily tasks, logistics, and responsibilities that are more challenging because of PAH.

Providing practical support for a loved one

The following are some ideas for the type of practical support that a person with PAH may need, with suggestions on what you might be able to do:

Help with day-to-day basics

One of the most difficult aspects of living with PAH is how the condition can make everyday tasks challenging. Chores, errands, grocery shopping, preparing meals, transportation, or taking care of a pet can be made difficult when energy levels and work capacity are much lower than they used to be. Some tasks, like yardwork or shoveling snow, may be unsafe. Many people with PAH also experience brain fog, making cognitively demanding tasks—like taxes or health-related finances—more difficult. Do not underestimate how helpful it can be to pitch in with the basics.

Help with treatment

Treatment plans for PAH typically include multiple medications, and the number of treatments can increase as PAH becomes more advanced. Following a treatment plan that involves multiple medications can be challenging, and it can help to have a caregiver act as a backup. This can mean setting alarms and reminders to take medications, refilling prescriptions, adding appointments to a calendar, and transportation to and from healthcare appointments.

Help with healthcare appointments

Speaking of healthcare appointments, this is another area where you can provide practical support as a caregiver. Between appointments, you can assist your loved one with tracking symptoms and identifying anything that’s challenging. Prior to an appointment, you can help your loved one prepare and prioritize a list of questions and topics that need to be discussed with their healthcare provider. If your loved one is comfortable with the idea, it can help to have a caregiver present at an appointment (or part of an appointment) to take notes and ask questions.

Help with lifestyle adjustments and interventions

People with PAH often need to make lifestyle adjustments, such as following a low-sodium diet, engaging in light physical activity (under the guidance of a healthcare provider), avoiding strenuous activity, and quitting smoking (if a person smokes). Making any lifestyle adjustment can be challenging, and it helps to have someone to partner with. As a caregiver, this can mean joining your loved one for a low-sodium meal or taking an easy-effort walk.

Help with organizing medical paperwork

PAH is a chronic medical condition that requires ongoing care and regular medical appointments. People with PAH will accumulate a lot of paperwork—test results, treatment documentation, prescriptions, insurance records, receipts, referrals. This information is important to medical care, and it’s important to have a system for organizing it all. As a caregiver, this is another opportunity for practical support.

Help with patient education

Patient education is the act of learning about a health condition that you are diagnosed with and the skills that can help you manage that condition. While it is called “patient education” it also applies to caregivers. Be a part of this process for your loved one, working together and sharing what you learn.