For Care Partners
Supporting Someone With PAH
As a care partner for someone with PAH, you play a significant role in their treatment journey. It's vital to stay well-informed and prepared, while also respecting your loved one's autonomy. Deepening your understanding of PAH and its treatments and helping your loved one organize important documents and medical information are two simple ways to make a meaningful difference.
Encourage independence in activities they can manage and give them space when necessary. Use this time to look after your own physical and mental wellbeing.
Working With a Care Team
Collaborating with your loved one’s care team may help alleviate their stress. Maintain clear communication with your loved one's doctor, asking questions and seeking clarity on treatments. Assist your loved one with their chosen form of tracking to help optimize doctor visits.
Tips for Managing Care Partner Stress
These practices may help you focus on the positive things in your life:
Mindfulness
- Think critically about the standards to which you hold yourself; if they're not realistic, make adjustments
- When you fall short of your expectations, cut yourself some slack
- If you find yourself feeling impatient, stressed, or frustrated, schedule time for yourself
Self Care
- Set self-care goals and make plans to put them into practice. Goals can include taking breaks from being a care partner, getting help with your care partner tasks, and promoting your own good health
- Take 5-minute breaks. Small breaks to practice stress-relief go a long way
- Enjoy today. While planning and organization are necessary for being a care partner, it is important to live life to the fullest
Support
- Schedule regular meeting times with family, friends, and other care partners–all of whom can play an important role in helping you manage stress
- Ask for and accept help. People want to help you, but they need to know how
- Build a relationship and communicate with your loved one's healthcare team
Organization
- Being prepared may help you cut down on "what if" thinking and anxiety
- Be organized and have plans for attending medical appointments, and medical emergencies
Connecting With Others
There are support groups dedicated specifically to care partners of loved ones with PAH. Hearing how others manage to juggle all the requirements of being a caregiver can be helpful, and the act of sharing your experience can help others.
