GIVE THE BEST CARE POSSIBLE

“When I get home from a rough day at work and [my husband] asks me to do something I had not planned on, it is not always easy to say okay and do it. But if things were reversed and I was the one who was sick, I would hope he would be there for me.”
—Peggy, pulmonary hypertension caregiver


Caregiver and patientAs a caregiver, you are an important part of your loved one's pulmonary hypertension experience. With planning, perspective and the knowledge that you don’t have to do everything alone, you can become a well-informed advocate for your loved one’s health and an everyday source of strength and courage for the PH patient in your life.

Educate Yourself

Get Organized

  • Anticipate future needs – financial and logistical.
  • Make sure important paperwork is in order. Help your loved one compile a binder to organize information about appointments, contacts, treatments and medical tests.
  • If your loved one is on intravenous therapy, make sure you always have the following on hand:
    • A thermometer (a fever can be a symptom of infection)
    • A back-up pump
    • A catheter repair kit
    • A blood pressure monitor to provide your loved one’s doctor with vital information over the phone
    • A small, portable cooler box or bag and large ice packs to store medicine when you’ll be away from a refrigerator for a few hours
  • If your loved one requires supplemental oxygen, be sure to have the following:
    • An extra prescription from your loved one’s doctor and a photocopy in your purse or wallet
    • A portable E-tank and flow regulator for power outages
    • A spare nasal cannula, since they wear out quickly and are easy to damage. Some portable tanks require special cannulas
    • An extra section of oxygen tubing and extra connectors
  • Keep detailed lists of what you do on a daily, weekly and monthly basis so if you ever need someone to fill in for you in a pinch the to-do lists are ready in advance. Include the steps in any process that isn’t self-explanatory, like changing your loved one’s medication or pump.
  • Write out an emergency plan so if you ever find yourself in an urgent situation your family will be aware of the sequence of steps to follow. Talk to your family about the plan and what each member can do to help in the event of an emergency.
  • Keep a caregiver’s log, journal or diary – refer back to see what works well and what does not.

Stay Calm

  • PH may take an emotional toll on the PH patient in your life. Your unwavering love and support can help them get through the tough times. Don’t set unrealistic expectations for yourself about being cheerful and energetic 24 hours a day, but do your best to focus on the positive when your loved one is feeling low. It can help to sit down together and set goals so you both have things to look forward to.
  • Take every day as it comes. You can do your best to plan for tomorrow, but sometimes things come up that you can’t predict, and that’s okay.

Respect Your Loved One

  • Respect your loved one’s right to make decisions about his or her own life.
  • Encourage your loved one to do the things he or she can do independently. Don't rush to do things he or she can do just as well without you.
  • Give your loved one space when needed. Use this time to tend to your own physical and mental needs.

 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.