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Millions of families nationwide find themselves caring for loved ones in their own family. That includes stress and confusion — especially when it comes to dealing with a parent’s finances and the services that are available to them.
U.S. Sen. Shelley Moore Capito, R-W.Va., experienced those issues as she provided care for her own parents. She recently introduced legislation into the U.S. Senate to help alleviate burdens on caregivers.
For his series, “Getting Into Their Reality: Caring For Aging Parents,” News Director Eric Douglas discussed the situation and the pending legislation with Capito.
The transcript below has been lightly edited for clarity.
Douglas: We’ve both cared for our parents. Let’s just talk about that experience for a second. So you cared for both of your parents, right? I believe I read that it was your mother first. And then your father began to decline? Or do I have that backwards?
Capito: That’s right. My mother really had a longer slope into full out dementia. She became very isolated, worried about losing her mind. It was sad to watch, but dad could kind of compensate and help her and answer the questions time and time again. And then when he slipped, he went much faster. That was in 2010.
Then it began a long slog for me and my brother and sister to have four years of caring for them, having them being cared for, and trying to figure all this out. It began slow, and then it just all of a sudden, almost one day, we’ve got real issues here.
I think that’s what happens in families, when it’s a couple one can kind of compensate or cover up for the other. And then when that person, when your healthy person goes down, you realize all the things that maybe you should have been paying a little bit more attention to.
Douglas: I asked the question because your father was the caregiver for your mother and did all of those things that we’re discussing. And then when he began to decline, then suddenly it fell to the next generation, to our generation, to step up and to provide that care.
Capito: It was challenging for us in that none of the three of us lived right there. You can always go back and look, and I’m sure you’ve done this yourself, could I have addressed this earlier, sooner or better? But you’re doing the best you can. And I think that’s what caregivers all across this nation are doing.
Douglas: Yeah, I’ve certainly gone in my head. Should have done this? Should have changed this sooner?
I’ll be honest with you, when I see information about newly introduced legislation, I generally don’t pay a whole lot of attention to it. I know how many steps it takes to become finished legislation. But tell me about this bill to alleviate the care or the burden on caregivers.
Capito: I think what I realized from my own personal experience, and then once I became sort of known as somebody who has lived this experience, is that going through all the insurance, every time they were admitted to the hospital, you have to get another document to sign, you signed the same document every time, why can’t the X-rays, or the testing be transmitted from one hospital to the next?
You have the burden of trying to figure out how to care best for your parents, but then all of the hurdles that you have to jump through, whether it’s for insurance purposes, or HIPAA, or the refrigerator breaks down, all of these things just come cascading down. And you end up with a lot of difficulties in terms of trying to figure out procedures, forms, communications, eligibility, whether you’re talking about Medicare or Social Security.
I think we could make it easier on caregivers who are trying to face this, to make it more streamlined, or at least have these agencies look at how they could streamline their processes to make it easier.
Douglas: That was one of the things that I struggled with, who do I go to to find out how to care for my mom? It’s very frustrating.
Capito: You are looking at financial data, too. That’s another thing. I mean, that’s different than what this act for caregivers or alleviating barriers for caregivers would do, but financial institutions, I think could help you a lot more in terms of trying to figure out credit card and bank accounts, so that not only do you have, “How am I going to get the health care? How am I going to pay for this?” And if they can’t communicate to you successfully, where is everything? I don’t know about you, but I spent a lot of time trying to unwind and figure out how to do all this.
It was a labor of love for me, but it was extremely time consuming and emotionally draining. And then you’re trying to have your life at the same time. My parents actually got very, very ill in 2014, which was the year I was running my first Senate race, and I’m like, wow, what am I going to do? Finally my mother, in the memory unit, in September of 2014, when my campaign obviously was almost over in November, my mother died.
I remember a campaign meeting that I had the day before she died. And I just looked at my campaign team, and I said, “I can’t do all this. My mother is dying.” I had no idea she was gonna die the next day, but I could see. And I really think my mother was looking in my eyes going, “She’s really tired. I might as well just hang it up. She needs a break.”
Douglas: You were in the U.S. House leading up to that, too. You had a full schedule going on with them and living in D.C., or at least commuting back and forth.
A lot of caregivers, just generally speaking, have moved away, we’ve moved all over the country. Families aren’t located within 10 miles of each other anymore. Who do you call? Who do you rely on?
Capito: I have an older brother and a younger sister. They were very helpful, but at the end of the day, one person ends up making those decisions, and that person was me.
Douglas: Why has the system grown to to be such a challenge for caregivers?
Capito: I think a lot of it has to do with people living longer. It’s not all about dementia, it could be broken hips or heart failure, whatever. I think people are living longer. And so I think that presents a challenge because, are they living healthy all the way to the day they die? Of course not. And so I think that’s a challenge. I think our society is much more mobile, as we said, so many people have moved away from home. We have families that maybe 30, 40 years ago, maybe the wife wasn’t working, but we have many more women in the workforce, dual occupation couples.
My mother’s mother had the same issue in the ’60s and ’70s. Once it was unmanageable at home, she went into a nursing home for like eight years. We don’t do that anymore. And because that’s not the modality that’s really the best treatment for certain types of things. I think that’s got some impact on it. And the cost of caring.
If you can’t quit your job and move across the country, which a lot of people do, it becomes very, very hard and you look at the cost and you say to yourself, it’s probably the least costly way to do it. And the best I’m going to feel about is if I just drop out of the workforce for right now and manage this. So I think it’s all kinds of factors like that.
Douglas: Nationwide, there’s 53 million family caregivers, but even in West Virginia, we’re looking at a quarter of a million people in a state of 1.8 million people. That’s kind of astounding. That’s one-in-eight, one-in-seven people in the state is a family caregiver for another 100,000 people who need the care.
Capito: That’s where something like the Credit for Caregiving Act, which is another one we put out, and it’s been out there for a couple years, to try to give some financial relief in the form of a tax credit for family caregivers. You try to attack it that way a little bit to maybe ease the burden. The nice thing about this issue, which is not too nice, but it’s totally bipartisan, and because this has no barriers in terms of how it hits people in terms of their politics, obviously. It’s one of the issues that we can work on together. I’m a big believer in medical research and development of new therapies and earlier treatment and earlier diagnosis.
So all of these things kind of drive me because of my personal experience, not that I hadn’t seen it in other families but until you hit it yourself, you really don’t understand what’s going on. And so that’s why I’ve sort of taken this on as one of my causes that I think we could make a difference on.
Douglas: Any prognostication on the possibility of this, this moving on through and out of committee and onto the floor?
Capito: This is national Family Caregivers Month, so it’s a good month to be talking about it. The bill probably doesn’t have a burden, but we’ll need to attach it onto another bill going through the Health Committee. We’re looking for those opportunities and it has bipartisan co-sponsorships. We’ve just put it out there. So we’ll see what happens. We’ve been trying to look for what we say is a vehicle to get it passed.