Elizabeth Dole: Advocating for Veteran Caregivers

Today's Caregiver July/August 2014

Elizabeth Dole served as Secretary of Transportation under Ronald Reagan and Secretary of Labor under George H.W. Bush before becoming head of the American Red Cross. She then served as North Carolina’s first female Senator from 2003 to 2009. She is a former chair of the National Republican Senatorial Committee and is married to former U.S. Senate Majority Leader, 1976 Republican Vice-presidential nominee and 1996 Republican Presidential nominee Bob Dole.

Mrs. Dole is also a family caregiver, veteran caregiver advocate and founder of the Elizabeth Dole Foundation. Gary Barg sat down to talk with Senator Dole about the needs of veteran and military family caregivers 

Gary Barg: Can you tell me about the work of the Elizabeth Dole Foundation? How did it get started?

Elizabeth Dole: This all came about for me because, about three and one-half years ago, Bob was hospitalized at Walter Reed for almost 11 months. Being there almost every day myself, I got to know many of the wounded warriors and their caregivers. I just could not believe what a challenging situation it was for the caregivers. And I got to know many of them well by just trying to help them have an evening away from the hospital room—taking them downtown to Washington for dinner, having a good meal and seeing the monuments at night.

When Bob came home from the hospital, his birthday was coming up. So we decided to have the caregivers at Walter Reed come to our home for dinner. We had four busloads of family members. Eight of the wounded warriors came in their wheelchairs with their wives or spouses, and some were husbands as well, the caregivers, and children. It was an opportunity to learn a great deal about what they were going through. They were going to have to handle the legal affairs for the family and the financial matters. They were also dealing with healthcare systems that had different structures and trying to coordinate all of that. And then, of course, once they are home, the challenges just really multiply in terms of being away from the hospital setting and providing medications, arranging for rehabilitation, and possibly having to do injections, and trying to prevent triggers that would set off an emotional response that could last not just hours, but days. So all of that while raising children. It just pulled at my heartstrings to see all of this going on and think, what in the world can I do to make a difference?

That is when I decided to establish a foundation. And almost immediately, we realized that what was needed was comprehensive evidence-based research that would really identify this population—who they are, what their needs are, what is out there now that can be helpful to them, where are the gaps in policies and programs, and then recommendations as to what needed to be done.

Gary Barg: I love the fact that you said evidence-based research. You commissioned the RAND Corporation to develop a study. What were the most important things you learned from this report?

Elizabeth Dole: What RAND said that surprised me was that two-thirds of the caregivers were in the workforce. The caregiver was now the breadwinner trying to pay for expenses of the medical care. Many of them felt so isolated. They really had no network of supporters, no one to step in, no family members. Many of them had no healthcare, not even a doctor.

Gary Barg: How is the Elizabeth Dole Foundation responding to what you learned from the RAND report?

Elizabeth Dole: If you are going to make a difference for these caregivers, you really need a national response to what I believe is a societal crisis because they are such hidden heroes. Most people are just not aware of what they are dealing with and the tremendous challenges. I found that every time I raise the issue, whether it is with a member of Congress or someone in the labor community or the business community or the State’s community or the non-profits, they will say, “What can I do to help?” It is refreshingly bipartisan, too, Gary.

So the next step to me was to form a coalition of all these sectors. It is not just the public sector. It is the private sector, as well. So what we are looking at is moving forward with the holistic approach. Collaboration is the key word. At this White House event, where we worked with First Lady Michelle Obama and Dr. Jill Biden, we wanted to highlight the coalition and introduce it. And then talk about two or three of the collaborations that are already in place as examples of what we are going to be doing from here on out. Easter Seals is one of them. Also the Chamber of Commerce. In the fall, they are going to have a summit and bring in business leaders from across the country to focus on the military caregiver issue.

One of the key initiatives here is to raise awareness of what is going on in these families, give a voice to the caregivers, and then to provide solutions through these collaborations that are occurring across the public, private, non-profit space and labor communities. And it is just incredible the way it has taken off in terms of people just moving fast to address these issues because they understand, with the war winding down, it is very important to get this information out immediately.

Gary Barg: This is so necessary. Two years ago, I keynoted a Red Cross event in Tampa for the spouses of post 9/11 military veterans called Mission Hope Care and Support Caregivers. They were so young. They were so involved. And I felt for every single one. They have to battle, as you said, two military systems. You are making such a great opportunity for them not to feel alone.

Elizabeth Dole: That is one of the major issues. There is no question about it, this feeling of isolation and no one to talk with, no help, nobody to step in. You put your finger right on it; no question.

Gary Barg: I would be proud to help in any way, shape, or form that we are able to help. We host a series of Fearless Caregiver Conferences across the nation. At every single one, the VA caregiver coordinator is invited to join the panel for that local community. And no matter if the caregiver is pre 9/11, post 9/11, spouse or widow, it is always shocking to learn what they do not know about the resources available to them. So, we put them in the room with the VA caregiver coordinator and just let them ask away.

Elizabeth Dole: Yes, that is great. One thing you might be particularly interested in is that we are currently working with AARP to look at pursuing some legislation that would ensure that caregivers are officially part of the medical team.

Gary Barg: I always like to say the family caregiver is the CEO of Caring for My Loved One, Inc. and you need to be the manager of services.

Elizabeth Dole: Exactly right. Also, the wounded may not know or the elderly individual may not be able to remember what took place in that room without the caregiver being there to reinforce it. I mean, it is just common sense, is it not?

Gary Barg: I think that caregivers need to spend time with other caregivers, no matter what illness or disease their loved ones are dealing with; we call it “de-siloing themselves.”

Elizabeth Dole: No question about it—bringing down those silos—we talk about it constantly. Leveraging resources, collaboration, innovation, bringing down the barriers and the silos, reaching out and forming partnerships—that is the only way we are going to get that kind of national response to this societal crisis.

Gary Barg: What would you say is the most important piece of advice you would like to offer a military caregiver?

Elizabeth Dole: You are not alone. That would be my most important piece of advice. In other words, you have a voice. Your concerns have been heard. There are a lot of people who are joining together to try to make a difference – a positive difference for the caregivers. They deserve so much honor and respect. And they are caring for those that cared for us. I want them to know they are not alone.