Balancing Your Loved One’s Needs With Your Own

Learn and Ask Questions

From the minute your loved one is diagnosed with PAH, there is a lot of information coming at you quickly. Trying to take it all in and learn as much as you can about PAH is key. Whether it’s through their healthcare team, support groups, or your own research, your loved one will appreciate knowing that you’re learning alongside them. It’s also important to keep an open line of communication with your loved one’s healthcare team. There maybe times when you are unsure why something is being done a certain way or you notice your love done is having new symptoms (or has stopped improving). You may want to ask about something that you read from a reputable source like the Pulmonary Hypertension Association or PAH Initiative. Speaking up and asking questions is a great way to advocate for your loved one and to be involved in their care.

Take Notes and Stay Organized

Consider having a binder, folder, or another organizational tool to keep all important documents in order. Keep records and your notes from all visits and medical paperwork together. Have a shared calendar or whiteboard with future appointments and questions you think of. It also may be helpful to document step-by-step processes, medication schedules, or daily caregiving activities in case you need someone else to fill in for you. Lastly, make sure your family or extended family are up to date on plans and processes in case of emergency. It can be a lot to keep track of, but it will make things easier day today if you are organized and ready for anything!

Value Your ME Time!

Many experienced caregivers will tell you: take breaks when you need them! That’s easier said than done, of course, but it is important to step away occasionally, even for short periods of time. Recharging can help avoid burnout so you can provide the best care to your loved one. When you have the chance, do what you love most. Your loved one appreciates all the work you do for them, so when you have time to step away, take full advantage of it. PAH will bring both good days and bad days. There will likely be times when you feel overwhelmed and need to take deep breaths. Remember, you are not alone. You are not expected to be everything or know everything. There are resources available, including support groups and other caregivers who have been where you are now. As you care for your love done, remember to be their advocate and listen to their concerns. But don’t forget to care for the caregiver! Your well-being and health are important, too.

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