Beth sharing her rare disease story.

Rare Caregiver Respite: Beth’s Story

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nord rare caregiver beth story e1564750373171Earlier this year, NORD launched the first-of-its-kind Rare Caregiver Respite Program, designed to enable caregivers to take a much-deserved respite. Beth Pruitt, caregiver for her daughter and one of the first to participate in the new program, shared how she will utilize the respite.

“My daughter, Danielle, and I travel to visit my mom and reconnect with family and friends. Our private insurance nursing benefit has been exhausted so we rely on Medicaid to pay for night nursing at home. Danielle is not a watcher. More of a doer so she wants to go go go all day,” Beth explains. “It’s hard for me to go go go with her all day and be responsible for her overnight as well. Medicaid won’t pick up night nursing on our visit because it is out of state. So the respite grant will pay for someone to monitor Danielle and her equipment while I get some sleep. It will allow us to vacation as hard as we can!”

Through the program, NORD provides financial assistance to eligible caregivers covering up to $500 annually so that a respite caregiver may be secured to care for a loved one. Potential applicants can reach out to NORD to determine if they meet eligibility requirements. The grant may be dispersed throughout a calendar year or be used in a single award.

Beth says, “Receiving this respite meant I could concentrate more on what are we going to do today, rather than how am I going to get enough sleep.”

The fund continues to accept additional donations to ensure the program is sustained for years to come. For more information and instructions on how to apply, click here.