Op-ed from Rosalynn Carter: Ask 2020 candidates for their agenda on family caregiving

Note: The following appeared as an op-ed in the Des Moines Register on Saturday, August 10, 2019. The op-ed is available online here and refers to a letter that can be viewed here.

For Jimmy and me, Iowa holds a special place in our hearts. During his presidential campaign I spent over 100 days in Iowa.  I visited 105 communities and knocked on more doors and met more Iowans than anyone thought possible. You are some of the most welcoming, warm, informed people we have ever met.  Our conversations covered everything from Jimmy’s favorite fish recipe to the rapid increase in the price of fertilizer to our national security.   

I especially remember the strong show of support you gave us. You truly are patriotic Americans who believe in doing what is best for our country.

As you prepare to interview and evaluate the next set of presidential candidates, I ask you to help me shine a spotlight on the more than 40 million Americans and over 300,000 Iowans who are family caregivers. 

You may not be one, but you most certainly know one. Caregivers are the selfless people who provide unpaid care for loved ones who are ill or have serious medical conditions. This is among the most challenging work there is. 

Being a caregiver requires infinite patience, physical and emotional strength, health care navigation skills, and a sense of humor—which can be hard to come by after sleepless nights and demanding days.

It is a reality for millions of Americans, including me.

I have cared for loved ones nearly all my life, so when I look in the mirror, I see a caregiver looking back at me. It began when I was 12 years old and my father became ill. Taking care of him took a toll on our entire family, my mother most of all. 

It is safe to say that many of you reading this also see a caregiver in the mirror.  You probably also see many around you without recognizing them, because caregivers are not necessarily who we all assume them to be.  They are split almost evenly between men and women, and fully one quarter are millennials. They can be looking after a parent with dementia, a spouse injured in combat, or a child with developmental challenges. Or they can even be caring for all three. 

Caregivers are sons and daughters, spouses, brothers and sisters, friends, veterans and civilians, and countless others. They are members of all our communities. 

And they need our support.  While they are focusing intently on their loved ones, their own health and well-being are impacted by long-term caregiving. Caregivers suffer from chronic conditions like heart disease, diabetes, and arthritis at nearly twice the rate of the overall population. They also have increased occurrences of ailments like acid reflux and headaches, an increased tendency to develop serious illness, and high levels of obesity and bodily pain.

Nor are the effects just physical.  These helpers are watching a loved one suffer and, in many cases, die.  They are exhausted, heartbroken, lonely, scared, and grieving—all while putting others’ needs ahead of their own. 

 The impacts don’t end there. With 60 percent of family caregivers juggling work and caregiving responsibilities simultaneously, caregiving has costs for workers and employers alike. 

The estimated economic value of family and friend caregiving is roughly $500 billion per year—three times greater than Medicaid’s expenditures on professional long-term care.

It’s easy to see that this issue needs to be a national priority. We must look at this community that is growing exponentially, especially as our population ages, and needs to be recognized. 

This is where all of you can help. I have sent a letter to all major candidates from both parties who have declared that they are running for president asking them to commit to a national agenda on caregiving as well as to make it a topic of their campaigns. 

Soon these folks will be asking for your vote at the state fair and at church or knocking on your door—just as Jimmy and I did over 40 years ago. 

Please ask them about this issue. The population of caregivers is 40 million—about the same number of people with student loan debt. We talk about student loans; shouldn’t we be talking about this? 

Since caregivers are often overextended as well as selfless, they need us to speak up for them.

Because as I’ve been saying for the last six decades, there are only four kinds of people in the world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.