Family Caregiving: The Hardest Thing I Ever Had To Do

“Taking care of my mother with Alzheimer's was the hardest thing I ever had to do in my life. When I was in the U.S Navy, I had the 2nd most dangerous job in the world by working the flight deck of an aircraft carrier. Yes, it was harder than that.” – Ray

A new report by the National Academies of Sciences, Engineering, and Medicine— Families Caring for an Aging America—examines existing support for family caregivers like Ray, and recommends ways to provide more of the help they need. For me, this report reinforces what I not only hear every day but know firsthand: family caregivers need support. Whether caring for a parent, spouse or other loved one, helping them to live independently can be overwhelming, stressful and exhausting.   But with some commonsense steps, we can make the big responsibilities of America’s 40 million family caregivers a little bit easier.

Ways to help family caregivers
The report made recommendations on what we need to do to better support our nation’s caregivers including:

  • Ensuring that healthcare providers recognize a family caregiver’s presence, including recording the family caregiver’s name in the medical record, and engaging and sharing information with the family caregiver in a culturally appropriate manner;
  • Developing health care providers’ professional competencies to assist their interaction with and training of family caregivers, including viewing family caregivers as a partner in meeting the care needs of a loved one; and,
  • Learning from other states’ experiences to implement effective caregiver supports, with a specific mention of the CARE Act, AARP’s model state legislation, as one such initiative for states to consider.


Fighting for family caregivers
These  recommendations, in particular, align with the work AARP has been conducting in states across the country, what we’re fighting for, day by day:

  • The CARE (Caregiver Advise, Record, Enable) Act to support family caregivers when their loved one into the hospital and as they transition home. Now law in more than 30 states, the CARE Act makes sure:
    • The name of the family caregiver is recorded when a loved one enters the hospital.
    • The family caregiver is notified prior to the loved one’s discharge.
    • The family caregiver receives a simple instruction of the medical tasks they will be performing when their loved one returns home — like managing medication.
  • Workplace Flexibility so family caregivers who work don’t have to worry about losing their jobs—or pay—when they need to take time off to care for a loved one.
  • A modest caregiver tax credit so family caregivers get some relief when using their own money to care for a loved one.
  • And more!

Bottom-line: Family caregivers need more support.
In Ray’s words,

“It was a 24 hour job, feeding, bathing, making sure she wouldn't run away, taking her to her doctors’ appointments and much, much more. I didn't have anywhere near enough support to take care of her and I was neglecting myself to be there for her. So please if you can help in any way to get the support that's so desperately needed to people in this situation I'm sure it will be greatly appreciated.”

For all family caregivers, now or in the future, AARP is fighting for you. You can join us by sharing your story at I Heart Caregivers. Speak out and help us fight for more support for family caregivers in your state.

To stay up to date on our caregiving campaign in the states, sign up for the AARP Advocates e-newsletter or visit your state Web page.

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.

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