Family Caregivers Share Stories, Speak Out For Change

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As I work with states across the country, I’ve had the honor of meeting some amazing family caregivers who are standing up and fighting for the support they need. Each time, I am touched deeply by the remarkable and personal stories I hear, like Janet’s.

Janet lives in Oregon, and knows firsthand the challenges caregivers face every day.  Six years ago Janet left her job as a television film producer for a true labor of love—to care for her step-father with dementia.  Before that she aided her daughter as she fought—and won—a battle against brain cancer.  And today, Janet helps her 92-year-old mother who now lives with her family.

Janet’s story is an illustration of incredible strength. Like Janet, millions of family caregivers do remarkable things everyday as they help their loved ones to live independently at home—where they want to be.  In addition to handling finances, cooking meals, and providing transportation, many caregivers perform complex medical tasks like wound care, managing medications, giving injections, and other tasks once only in the domain of doctors and nurses.

Last week, Janet testified in favor of the Caregiver, Advise, Record, Enable (CARE) Act, a bill being considered by the Oregon Legislature that would require hospitals to:

  • Record the name of family caregivers on the medical record of a loved one
  • Inform the family caregiver when their loved one is to be discharged or moved
  • Give the family caregiver explanation and live instruction of the medical tasks they will need to perform at home

Caregivers fight for the CARE Act
Janet is not alone in her fight for the CARE Act.  Family caregivers across the country, like Kristin in Oklahoma, Tish in Indiana, and Cynthia in Pennsylvania, have been speaking out and sharing their personal stories, urging their state legislators to pass the CARE Act—one commonsense solution to help make their big responsibilities a little bit easier. In doing so, they’ve been shining a spotlight on all that family caregivers do.

Thanks in large part to Kristin’s courage in bringing her family’s experience to the public’s attention, Oklahoma became the first the state in the nation to make the CARE Act law last year; New Jersey followed shortly. In 2015 as caregivers across the country continue to call for support, the CARE Act has become law in five additional states: MississippiNew MexicoArkansasWest VirginiaVirginia, Nevada, Indiana, and Colorado.

With the help of caregivers like Janet, Kristin, Tish and Cynthia, we continue to fight for the CARE Act—and other commonsense solutions to help them and their loved ones—in states across the country:

If you’re a family caregiver, I urge you to join me and all the other caregivers who have shared their stories—because together we can fight for you and your family.

Share your story.

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*Blog Updated 5/11/2015


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Elaine Ryan is the vice president of State Advocacy and Strategy Integration (SASI) for AARP. She leads a team of dedicated legislative staff members who work with AARP state offices to advance advocacy with governors and state legislators, helping people 50-plus attain and maintain their health and financial security.

Follow Elaine on Twitter: @RoamTheDomes.

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