Pulmonary arterial hypertension is a terrifying and debilitating disease that affects not only patients but also their support systems and caregivers. It can be overwhelming and stressful to try to step up and care for a loved one that has been diagnosed with PH or any chronic disease. Below are three awesome resources that will help you learn the basics of being an amazing caregiver and help you organize your efforts at providing care.
1. National Caregivers Library – www.caregiverslibrary.org
This site has great information about the basics of being a great caregiver, ways to care for yourself (the caregiver), and several articles that touch on topics such as legal issues and end of life concerns. They also have forms and checklists to help keep you organized.
2. Lotsa Helping Hands www.lotsahelpinghands.com
This site is devoted to building a community of support around your loved one. People can volunteer for tasks such as driving the patient to appointments, doing the grocery shopping, or babysitting. You can schedule/calendar all of the help you have and all of the help you need. This site has a mobile app so all of this organization can happen right on your phone.
3. Caring Bridge www.caringbridge.org
Communicating to your loved ones and friends about a patient’s condition can be daunting. You may feel pressured to get back to every individual that contacts you with well wishes but not have the time or energy to do so. It can be joyful to repeat good news to all that want to hear it but can be very painful to have to repeat bad news. Caring Bridge allows your family and friends to sign up for updates. The caregiver enters the message once and it can be accessed by anyone that has the password