Taking care of a loved one with pulmonary arterial hypertension (PAH) can be difficult, both physically and emotionally. If you are new to the caregiver role, you likely have a lot of questions about the condition. You may also be looking for outside support. In this article, we’ll walk you through the basics of what you need to know as a caregiver to a loved one with PAH.
Pulmonary arterial hypertension refers to high blood pressure in the arteries that carry blood to the lungs, where it picks up oxygen. The condition results from a narrowing of these blood vessels, which are called pulmonary arteries. The heart must work harder to pump blood through these narrowed arteries. As a result, the heart muscle can weaken over time, resulting in eventual heart failure. There is no known cure for PAH, but symptoms can be managed with both medical interventions and lifestyle changes.
Symptoms of PAH
Now that you are in the role of caregiver, it’s important to understand the symptoms of PAH. This knowledge can help you better understand what your loved one is going through, and how their life has changed. Common symptoms of the condition include:
- shortness of breath
- chest pain
- swelling of the abdomen, wrists, hands, ankles or feet
The main thing that you, as a caregiver, need to understand is that PAH makes daily life considerably more difficult for the patient. Even simple, everyday tasks will often require more energy than your loved one can manage. In addition to the physical limitations this places on them, PAH often causes emotional distress, including embarrassment, frustration, social isolation, and depression.
How to Help
Helping your loved one can become a balancing act between doing things for them (or hiring help for some tasks) and helping them to do things for themselves. You don’t want to come on too strong, assuming that they want you to do everything for them. A good idea is to sit down with your loved one in the beginning, and talk about which areas they want or need more help with, and which they would prefer to do themselves.
As a starting point, here are some tasks that someone coping with PAH may need done for them:
- yard work
- house cleaning
- child care
Some ideas for helping your loved one do things on their own include:
- modifying toilets and showers to be handicap accessible
- rearranging closets and pantries so that the most-used items are at eye level
- raising low appliances, such as washers and dryers, to reduce bending and squatting
- planning tasks to be as efficient as possible
Taking Care of Yourself
This is a stressful time. You’ve taken on responsibilities that are unfamiliar, and doing for others leaves less time to do things for yourself. It is important to keep in mind that you cannot care for your loved one if you aren’t taking care of yourself. Some ideas include:
- Make time for activities and friends you enjoy.
- Keep a journal, in which you can talk freely about the feelings and challenges you’re experiencing.
- Allow time for yourself to de-stress. Schedule this time and keep it sacred. Take a bubble bath, put on earphones and listen to music, read a book—whatever helps you to relax and recharge.
The most important thing you can do for yourself is to find a support group. Research has found that caregivers who actively participate in a support group are much better equipped to handle thoughts, feelings, and situations they encounter while caring for their loved ones. They are less likely to have negative feelings about their family member, such as anger and resentment. These negative feelings can undermine your relationship with your loved one, as well as the care you are able to offer.
Online forums and email groups, such as those found at the Pulmonary Hypertension Association website, are a great way to connect with others who have found themselves in a situation similar to yours.