Caring 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 living 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 that is in your care and give advice when asked to do so.

Attend Doctors 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 life-threatening diagnosis to absorb all the new information that is coming at them. You can help fill in the blanks later or remind them of something the doctor said that they may have missed.

Get to Know the People Who Are Caring for Your Loved One—Get to know the doctors and nurses so you can call them with any questions or concerns you have.

Listen—Remember, you can't fix your loved one's disease, but you can listen and be there for them. They will be going through a lot of feelings and may be feeling alone with this disease, so knowing someone is there for them is invaluable.

Ask How They Feel—This is a good way for you to keep an eye on how they are doing. Are their symptoms getting worse? Are they 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. This may mean the patient needs an adjustment in medication or dosage. Keep a journal of your observations and point them out to your loved one or their 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 them up on cinder blocks. Click here for more tips

Most of all:

Take Care of Yourself

Click here for some simple suggestions