‘Watching my daughter face this disease was terrifying. As her caregiver, I made sure I was strong for both of us. I was her voice when she couldn’t speak on her own.’
As a caregiver, you play a key role in your loved one’s journey with pulmonary hypertension. As the people closest to PH patients, family and friends see daily how PH affects patients. With planning, a clear perspective and the understanding that you don’t have to do it all, you can be an informed advocate and a source of strength and support.
Stay calm and manage stress
PH may take an emotional toll on your loved one living with the condition. Your love and support can help them get through the tough times. Don’t feel pressure to be happy and energetic all the time, but a positive attitude can help when they’re down. You may find it helpful to review goals together to give you both something to look forward to.
Take each day as it comes. Do your best to plan for tomorrow but remember that sometimes things come up that you can’t predict, and that’s okay.
Respect your loved one
Remember that like you, PH patients have good days and bad days. Be prepared to adapt your level of involvement to the ebb and flow of your loved one’s energy levels.
Respect your loved one’s right to make decisions about his or her own life. Encourage them to do things independently when possible. Don’t rush to do things they can do.
Give your loved one space when needed.
Advocate
Remember that PH patients may not always look ill. Speak up to help relatives and friends recognize the challenges your loved one faces.
Find others who can join you to help in your loved one’s care. Ask a friend to stop by during hospital stays or join your loved one in a favorite activity or exercise.
Encourage your loved one to participate in individual therapy or join a PH support group.
Take care of yourself
Self-care is not a luxury, it’s a necessity for caregivers. Learn how to find time to manage your stress and take care of yourself
Self-care
Your role on the care team
Help manage treatment
When possible, attend doctors’ visits to help record and retain medical information and discuss symptoms the patient hasn’t noticed.
Keep doctors’ names, phone numbers and addresses handy. Maintain an updated list of medications, treatments and instructions.
Support your loved one in checking vital signs daily: weight, blood pressure, heart rate and temperature. If needed, remind them to take their medications.
Communicate with the medical team
As a member of your loved one’s health care team, it is important to build relationships with their medical providers. PH-treating doctors and nurses want to help you understand your loved one’s complex PH therapies. Contact the medical team with questions about treatment or side effects.
They also want to know how caregiving affects your health so you can continue to be the best PH caregiver you can be. Talk with the patient’s physician if depression is escalating or negatively impacting your loved one’s ability to cope or manage daily activities.
Educate yourself
Caring for someone with a complex medical condition means taking time to educate yourself on topics ranging from treatment and exercise to insurance and research.
- About Pulmonary Hypertension
Learn about pulmonary hypertension and how it is diagnosed, types of PH and related conditions, and treatment options.
- Living with PH
Living with PH covers medication management, exercise, nutrition, work, travel and other ways to navigate daily life.
- Participating in Research
Participating in research may lead to a better understanding of how PH develops and new treatment options.
- What is an emergency?
Know when to call the doctor. Recognize symptoms that may point to low oxygen or serious medical issues.
- Your PH Care Team
Ask these questions so you know your doctor’s expectations and what you need to know.
- Recognize signs of stress and depression
Since chronic disease can lead to depression, watch for warning signs.
PHA newsletters
Sign up for PHA’s biweekly e-newsletters, PHA News and PHA Connects, to stay current on PHA events, education and research.
SubscribeGet organized and prepare
Anticipate future needs – from financial to logistical. Get important paperwork organized. Help your loved one create a binder or web folder for appointments, contacts, treatments and medical tests.
- Know your rights for family leave, disability coverage and insurance options
- Write out an emergency plan. Talk to your family about the plan and what each member can do in the event of an emergency
- If your loved one is on intravenous therapy, create an emergency kit
- If your loved one requires supplemental oxygen, follow these steps to prepare for emergencies
Empowered Patient Toolkit
Save or print these digital worksheets in our Empowered Patient Toolkit to help track medications, prepare for travel, manage oxygen and inform emergency personnel.
Patient ToolkitCaregiving Resources
- CaringBridge allows caregivers and patients to create free, personalized websites to connect with friends and family during a serious health event.
- Lotsa Helping Hands is a web-based caregiving coordination service that allows family, friends, neighbors and colleagues to create a community and assist with the daily tasks that become a challenge when caring for a loved one.
