Caregiver story

Jean MarchThe Plight of the Caregiver

The following was written by Jean March in January 2001. She wrote this passage expressing her feelings towards the caregivers of PH patients. It was first presented to her PH support group at a meeting in Tampa, FL. Jean March succumbed to her illness on January 29, 2002.

It is devastating to be diagnosed with Pulmonary Hypertension. It changes our lives. We live with constant reminders of the disease.

But, I believe the plight of the caregiver is much worse.

When I am sick, I go to the hospital and someone takes care of me. I feel bad but medication helps.

When I am sick my husband comes to the hospital also. He worries about me. He makes sure I am receiving the best of care. He brings me whatever I need and helps me mix the flolan. He follows the nurse to the refrigerator to make sure she places the ice packs in the freezer and the cassettes in the refrigerator and not vice versa. He calls me several times a day to make sure I am OK. If I have a procedure, he is there waiting for me when I return to my room. He visits every day. He loves me.

He also has to go to work and take care of everything at home. He has to explain to the dog that not only has she been home all day long but now he's too tired to spend much time with her. If he has any time left, he takes care of himself.

PH affects the Caregiver more than anyone can realize. They live in constant awareness that their loved one may be ill or in need of their help. They make important decisions based upon what the doctors think may happen. They live their lives under a tremendous amount of PH stress.

Perhaps those researchers can come up with a much needed cure of the PH Caregiver. Perhaps this cure should help them sleep better, give them more hours in the day and help them worry less. Perhaps it can give them wisdom to make important decisions based upon supreme knowledge of what this disease will do with their loved one.

To all the Caregivers out there, we salute you!


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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.