Caregiver Voices Unied

1150 Connecticut Ave, NW Suite 501

Washington, DC 20036-3904 

(202) 454-3970

 Caregiver Voices United

1150 Connecticut Ave, NW Suite 501

Washington, DC 20036-3904 

(202) 454-3970

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CAREGIVER LEADERS

Meet Congressman Gregg Harper

Gregg Harper is currently serving his fifth term in the U.S. House of Representatives and represents Mississippi’s Third Congressional District. Rep. Harper knows the challenges that family caregivers often face. He has been a caregiver for his mother, who died of cancer two years ago, just short of her 92nd birthday, and for his 28-year-old son, who suffers from Fragile X Syndrome, a genetic condition that causes a range of cognitive and developmental disabilities.

This experience inspired the congressman to be one of the original sponsors of the RAISE Family Caregivers Act which was signed into law earlier this year.

The law will focus the nation’s policies and resources on the growing burdens on family members and identify specific actions that government, communities, providers, employers, and others can take in order to recognize and better support these devoted family caregivers. In Rep. Harper’s own words, “We realize the burden. We need to understand the parameters of that burden and develop a strategy to help people in the days ahead.”

Meet Lisa’s Mom

I am the caregiver to my 31-year-old daughter Lisa, who is chronically ill. She was born with a renal (kidney) problem that was not diagnosed early. Lisa has had three living-donor kidney transplants – one from me, one from my husband, and one from my other daughter. Most people don’t get to have three transplants. We were all more than willing to give her a chance to live a more normal life, one not on dialysis.

She suffers from the effects of long-term prednisone use, which she takes to keep her body from rejecting her new organ. The prednisone has left her with multiple bone problems, a short stature and severe depression. She takes several medications, including heavy-duty pain meds.

I have been suffering from guilt and depression issues – like any caregiver, I feel the overwhelming responsibility of care Lisa needs: a doctor, appointments, medication management, companionship, and help around the house. I have family who decided that if Lisa is at home and not hospitalized she must be fine, which is not understanding or helpful.

As a caregiver, you feel guilty leaving the person and enjoying your own life. You ask yourself, “How could I when she is suffering?” I do try to be positive, but this has been taking a toll on my own health.
All that said, she is my daughter, and I will always treat her with the love, respect and dignity she deserves.