Get information. Share concerns.
PAH affects more than the patient. It can impact family members and caregivers. As a caregiver or loved one of someone dealing with PAH, you may have many questions and concerns. This is perfectly normal. You may feel helpless. You may worry whether your loved one will become more ill. You may resent having to be responsible for his or her care 24 hours a day and having to give up your own social, career, and recreational activities. You’re not alone. The following pages offer some tips on what you can do to best care for your loved one, as well as what you can do to take care of yourself.
Care for your loved one.
Support for any person with a chronic illness is probably the most important thing a caregiver can provide, but there are many other things you can do to help someone dealing with PAH.
- Be informed. Learn as much as you can about the disease and treatment options so you know what is happening to the person who is in your care and can discuss the situation when asked to do so
- Attend doctor appointments regularly. It’s great for a patient to have another set of ears at office visits. It’s often very difficult for a patient who is under stress with a diagnosis for a serious condition to absorb all the new information being presented. You can help the patient recall the conversation with their doctor
- Get to know the people who are caring for your loved one. Get to know the doctors and nurses so you can discuss with them any questions or concerns you have
- Listen. Remember, you can’t fix your loved one’s condition, but you can listen and be there for him or her. Your loved one may experience a lot of emotions and may be feeling alone, so knowing someone is there for support is invaluable
- Ask how he or she feels. This is a good way for you to keep an eye on how your loved one is doing. Are symptoms getting worse? Is he or she experiencing side effects? You may notice outward signs that things are better or worse that the patient may not notice. Check for signs of decline, including less energy, increased breathlessness, and swelling in the ankles and legs. One way to do this is to use the self-assessment guide. Record your observations, and share them with your loved one and the doctor
- Help troubleshoot. Think of ways you can help make the life of someone with PAH a little easier. One husband noticed his wife was having trouble bending over to load and unload the washer and dryer, so he put these appliances up on cinder blocks. Click here for more tips
Care for yourself.
The most important thing you can do for your loved one is to take care of yourself.
Here are some simple suggestions:
- Be sure to get adequate sleep
- Make a point to exercise regularly
- Adopt healthy eating habits
- Schedule leisure and activities you enjoy
- Find someone to talk to
- Most of all, don’t feel guilty for taking time off for yourself