Family Caregivers: Everyone Has a Story

When I took the role as state director of AARP in Ohio five months ago, I said at the time that my dedication to the organization’s mission and resolve to advocate for policies supporting older adults and their families comes as much from my career experience as my role as a family caregiver.

In planning for the new year—one in which the needs of family caregivers will be central to everything we do at AARP Ohio—I thought this was a perfect opportunity to explain why I feel this way and share my personal story and the insights I’ve gained taking care of my mom.

For many years, my mother had been living on her own in Florida. When she began to experience health concerns, my brother and I moved her closer to us. And it’s been wonderful. She was able to watch my kids grow up, and has played a more active role in our family.

When the pandemic hit, we became very concerned about her exposure to us, doing everything possible to create a bubble around her. And even though it seemed like the right thing to do at the time, she—like many Americans, especially those who are elderly—suffered from immense isolation. In retrospect, I wish we had kept her with us and been more hands-on.

Seeing the toll it had taken on her, we decided to move her in with us. With our kids now grown, we found a home with a mother-in-law suite that allows me to provide more direct caregiving and her some privacy and independence.

She’s 86 now and has heart failure. She experiences anxiety at times. I coach her through these periods. I make sure she’s taking her medications appropriately. I schedule and accompany her to all her doctor appointments. I’ve made sure she continues to have an active a role in the household. She helps with the laundry. We cook together. We grocery shop together, and steadied by the food cart, she takes advantage of this time to walk up and down each aisle for exercise. We look for excursions that we can enjoy together as a family, and that keep her mind and body active.

I know this will get harder. I know that I’m fortunate to have the means to provide the caregiving support my mother needs without having to rely on a long-term care system that over time has become broken and, for complex reasons, often offers unreliable or even low-quality care. And I know that most of the 48 million Americans who are family caregivers, including more than 1.5 million in our own state, are not as fortunate.

Ohio’s Family Caregivers

Here in Ohio, family caregivers provide 1.4 billion hours of care and up to $21 billion in unpaid labor per year, managing medications; preparing meals; helping with bathing, feeding, and dressing; transporting their loved ones to medical appointments; and handling all their financial and legal matters.

You might be surprised to know that nearly one in four of these family caregivers are millennials (currently age 28 to 43) and 40% of them are men.

These individuals are carrying out increasingly complex tasks they’re not trained for, like administering multiple medications, changing dressings and handling medical equipment. As many as 75% of family caregivers are caring for someone with dementia or other cognitive disorders. Many times, they’re taking on the role as care manager.

Then there is the financial burden: 60% of these family caregivers are juggling their caregiving responsibilities with paid work. AARP research shows that family caregivers have forgone $67 billion in earnings either because their careers have been disrupted or they’ve had to leave the labor force altogether.

It’s a lot. Which is why the needs and concerns of family caregivers throughout the state are at the top of our priority list when it comes to the work we do at AARP Ohio. For example:

• We’re advocating for legislation that would relieve some of the financial burden of Ohio’s family caregivers through a state tax credit.
  
• We’re providing education and resources that have been researched and designed to support and address everything from caring for loved ones with specific diseases, such as Alzheimer’s and diabetes, to coping with the financial and emotional toll family caregivers are attempting to withstand.
  
• We’re creating opportunities for family caregivers to connect with one another, so that they’re aware of local, state and national services already available to them that they may not know about. We also want to build a community of caregivers where we can share with one another our worries and frustrations and the ways in which we address these.

As they say, the only way around certain challenges is through. This is certainly the case for family caregivers. But as they also say, there is strength is numbers. This starts with finding each other and sharing our experiences. I’ve shared with you my story. Starting here, starting now, I invite you to share yours.


Related Caregiving and Advocacy Resources

• Fighting for Family Caregivers in Ohio (advocacy and resources)
• Share Your Caregiving Story
• Family Caregiver Resources for Ohio
• AARP Family Caregiving Resource Center