Military Caregivers Get Help With Respite Relief Take on Today

Military Caregivers Get Help With Respite Relief

AARP and the Elizabeth Dole Foundation are assisting caregivers of injured veterans service members

Courtesy Lara Garey/AARP

Wilma Consul: There are more than 5.5 million veteran and military family caregivers in the United States. Caregiving is hard work, and for many, the ones who give care end up exhausted and sometimes burnt out. Getting others to pitch-in for a bit of a break can be difficult. Wilma Consul: On today's show, we chat with Lara Garey, a caregiver to her husband, Tom, a veteran of the Air Force. She opens up about the challenges of being the sole provider of his care 24/7. But good news came last year: Lara was able to find help courtesy of the new Respite Relief Program. We'll also hear from my co-host, Bob Edwards, who talks to Lee Woodruff about this new respite program. Woodruff is a caregiving advocate and the co-founder of the Bob Woodruff Foundation. And we'll learn about the new resources available to veteran and military caregivers with Jean Chatzky, AARP's financial ambassador. That's coming up next. Wilma Consul: Hi. I'm Wilma Consul with an AARP Take on Today. Wilma Consul: Lara and Tom Garey have been married for 29 years and live near Austin, Texas. Tom is a veteran of the Air Force. In 2016, Tom was diagnosed with ALS, or what many know as Lou Gehrig's disease. His condition impacts his mobility, speech, and ability to breathe. Lara has served as his caregiver since the diagnosis. Before the pandemic, Lara had family members and clinicians coming in and out of the Gareys' home every day to assist in providing care for Tom. But once quarantine restrictions began, that help stopped. For almost a year now, Lara has been on her own with little support. Until recently. Wilma Consul: Lara is one of the military caregivers, or Hidden Heroes, of the Elizabeth Dole Foundation. She's also a Dole Caregiver Fellow representing her state. Named and established by the former senator and wife of Bob Dole, also a senator, the organization works with caregivers for current military and veterans. One of its Hidden Heroes programs provides no-cost short-term assistance that alleviates the heavy lift of caregiving. And Lara is here to talk to us now about the Respite Relief Program and share some of her experiences as a caregiver to her husband, Tom. Lara, welcome to Take on Today. Lara Garey: Thank you for having me. Wilma Consul: First, how are you, and how is Tom doing? Lara Garey: Well, I have to say, at this very moment, which is really how we have to do our days now, we're good. I'm in Texas, so we are thawing out from the big freeze last week. Wilma Consul: Wow. Lara Garey: And of course, the way he feels for the day kind of leads the way the house feels, so it's a good day today. Wilma Consul: How does it feel to finally get that respite after a year? Lara Garey: Overwhelming. Tom requires 100% care. Our activities of daily living, his ADLs. He is paralyzed, he is bedbound, he has a trach, he's on a ventilator, so his requirements are quite high. And being that person 24/7 for him can get exhausting. I love my husband more than anything, but it is, I will say, very difficult. So when the Dole Foundation announced that there was going to be a Respite Relief Program, I was ecstatic, and I just couldn't wait for the program to begin. Wilma Consul: Can you tell me, give an example of what happens? Like when do they come, how often, and what do you get to do when you're not caregiving? Lara Garey: I use the respite maybe a little different than most. Typically, respite is so the caregiver can get out of the house or go do something for themselves. Unfortunately, with my husband's level of care, we're not able to let just anyone oversee his care. Typically, it's going to be skilled care that is taking care of my husband. In our situation, I started to look at it as, "Well, what is the ancillary care that I give my husband? What are those things that are not so much the hands-on, but those things that still have to be taken care of?" Like for Tom, he has a feeding tube, and we have him on a 24-hour pump. So a lot of my days during the week are filled with cooking meals and blending them and getting them the right consistency so we can give Tom so he can maintain some weight. Lara Garey: One of the things I ask the respite caregiver to do is to help cook meals and blend them. She also was able to come into the home and helped pick up the home, because let's be honest, when your priority is your husband, the kitchen's not the priority. And so she was able to come in and also help with the kitchen and unbox the medical supplies that come in. We have a ton of medical supplies that come to the door daily, and I don't always get a chance to unpack them and to store them in the way that they should be stored so they're easily accessible. Our respite person was able to do that, and what that does for me is it allows me to not have to worry about that. I actually chose to have our person come in on Sundays so I could start Monday fresh and not feeling like I was already two weeks behind. Wilma Consul: Well, I'm glad that you were able to do something like that for yourself. Can we go back a little bit to the time that you and Tom found out about the ALS diagnosis? What was your reaction? Lara Garey: I tell people it was a gut punch. Tom was in the Air Force for six years, and then after the Air Force, he worked for the state of Texas. And it was one December in 2015, one day, he noticed that his hand just was having a little bit ... It was not as strong. He couldn't button his button on his shirt. And that led him to go to the doctor, where his primary care physician indicated that it looked like it was carpal tunnel syndrome. They sent him to a neurologist just to see, and it took ... We're actually very lucky, if you can say that. Lara Garey: It took Tom probably three months for his diagnosis. ALS is a diagnosis of elimination, so being able to be diagnosed in such a short time was actually a positive because it allowed us to, one, not worry and wonder what could it be. We knew what it was. We were able to connect with a VSO, a veteran service organization, to start the beginning of getting into the VA. And it was actually his service that pushed the doctor into, "Yes, we have a few more tests to run, but we're almost confident that you have ALS." Tom served in the first Gulf War, and those folks actually have a much higher incidence of ALS than others. But the veteran community is diagnosed more often. Wilma Consul: What do you miss most about the life you had with Tom before ALS? Lara Garey: I miss everything. I wish I never knew what ALS was. It is a horrendous, sad disease. It's one that impacts not just the person, but it's the family. Before Tom was diagnosed, we were coming towards the last 10 years or so of our careers. We were looking forward to retiring. Tom was 47 when he was diagnosed. And we have a son that is graduating soon from high school. So we were looking forward to spending the rest of our lives just enjoying each other, and it's gone. The dreams that we had are gone. Knowing that Tom is going to pass and I'm going to have to continue has been one of the hardest things. Caring for a loved one that needs such intimate care and the type of care that Tom needs is difficult. But compound that with the knowing that we're not moving towards a rehab situation. We're moving towards the end. It just makes us take every day and enjoy it and make the most of the day. Wilma Consul: Lara, I admire and respect what you do, and all the caregivers out there. This is not an easy job. How do you maintain your strength and level of energy to keep going? Lara Garey: Well, my strength comes from my faith and my husband and my family. And it comes from those that are walking the path with me, not just with ALS, but those caregivers that are in the fight with me. I do get my strength from that. I get my strength from my son. I get my strength from my husband, and I watch him fight this disease daily, and I know that I can do that, as well. Just as I know, as hard as it's going to be, I will be able to stay strong even after the love of my life is no longer here with us. Wilma Consul: And what can you say to the caregivers who are just starting this journey with their families? Lara Garey: Yeah, I would say, one, just you need to rely on those around you. One of the hardest things to do when you become a caregiver is to accept help. And it's one thing to ask for help, but it's another thing when people are offering it. Sometimes we want to pretend that we're strong, probably a lot stronger than we really are. Look for help. As a caregiver, find your support system, and use that support system. Have faith, and know that no matter what, you'll be okay. Wilma Consul: Coming up next, we'll take a peek into Lara and Tom's life at home. Wilma Consul: Is Tom able to speak a little with you at all? Lara Garey: He can. He communicates using a communication device. It's a computer with an eye gaze track system, and I am happy to have him say something to you guys if you want. Wilma Consul: Oh my goodness. Yes. I was just going to say- Wilma Consul: Stay tuned. Wilma Consul: We have a couple of announcements. Hollywood's awaited award season is here, and older adults are showing up in full force. For 20 years, the Movies for Grownups program has championed movies for grownups, by grownups, by advocating for the 50-plus audience, fighting industry age-ism, and encouraging films that resonate with older viewers. This year, AARP is expanding its awards program to honor standout streaming and TV programs in new categories. Wilma Consul: The iconic anchor of The Today Show, Hoda Kotb, will host the awards. From Tom Hanks and Viola Davis to Jennifer Aniston and Spike Lee, see all of the actors, directors, films, and more that have been nominated for big honors at AARP's annual Movies for Grownups Awards, broadcast by Great Performances on Sunday, March 28th at 8:00 PM on PBS. Check your local listings. And next week, on Take on Today, we'll learn who the winners are. My co-host, Mike Ellison, will talk about the awards with AARP film critic, Tim Appelo. They'll also dive into the role that TV and film have played during the pandemic. Be sure to look out for that episode Thursday, March 4th. Lara Garey: He can communicate very well. He is able to use his eye gaze to get on the internet and to text people. He does social media. He's pretty active, he’s gotten Instacart, groceries to us. And here, I'm going to go to the screen just so you guys can. Wilma Consul: Sure. Lara Garey: This is Tom. Wilma Consul: Hello, Tom. It's very, very nice to meet you- Wilma Consul: Listeners, we are on Zoom, and Tom is smiling. He is on his bed. We can see right in front of Tom is an eye gaze. It's a machine, so when he looks at it, it types the letters. Lara Garey: So that is, he can type most anything, and he gives us our marching orders for the day. He pretty much controls the house at this point. Wilma Consul: Well, Lara, thank you so much for taking the time to do this with us and talk to us here on Take on Today. Let me ask you one last thing. Think of something that you would like to do that is not Tom-related, just for you. Lara Garey: I like to just take a breather and sit outside with the quiet because sometimes that's just all I need. I need to quiet my mind because it is always going, trying to ensure everything's working for Tom in the house. So just take it in. That's what I do for me. Wilma Consul: Lara Garey is a recipient of the Respite Relief Program for military and veteran caregivers from the Dole Foundation, which works with military families. Again, Lara, thank you. Thank you very much. It's a pleasure to meet you and Tom. Lara Garey: Thank you so much for having us. And I encourage all of our veteran caregivers to reach out to the Elizabeth Dole Foundation and apply for the respite program. It's very easy to do, and they will be very happy that they did it. Bob Edwards: Elizabeth Dole Foundation's Respite Relief Program is receiving support from AARP, the U.S. Department of Veterans Affairs, CareLinx, Wounded Warrior Project, and the Bob Woodruff Foundation. Our next guest, Lee Woodruff, is the co-founder of the Woodruff Foundation, and she's married to Bob himself. Fifteen years ago, Bob was still in his first year as co-anchor of ABC World News Tonight, and while covering the war in Iraq, his armored vehicle was hit by a roadside bomb. Moments later, Lee received the call that would thrust her into the role of caregiver. Bob Edwards: Bob spent over a month in a medically induced coma before beginning his long road to recovery. But thanks to the quick actions of military medical professionals, his life was saved. Lee and Bob have since founded the Bob Woodruff Foundation to assist injured service members and their families. Lee is here to discuss the new Respite Relief Program, the same one that Lara received. And if you want to hear more about the Woodruffs' story, you can listen to episode 70 to hear Lee talk about the realities of suddenly becoming a caregiver and what that wake up day was like for her. Lee, welcome back to the show. Lee Woodruff: Oh, Bob, it's so nice to hear your calm and wonderful voice. Thanks for having me on. Bob Edwards: It's been 15 years since Bob's accident. What does it mean for the Bob Woodruff Foundation to sign on to this project? Lee Woodruff: Well, you know since you were one of the first people to interview me when Bob and I came out of his recovery, you know that I've been passionate about speaking for the caregiver because I think for a very long time in history and still, the focus is often on the patient, the person who's ill or in need of help. But the critical element to an entire household or a family or all the branches in the family tree is that person who is giving the caregiving, so I've felt passionate at the Woodruff Foundation that caregivers have to be part of the mix. AARP has always shown a great interest in caregivers, and the Elizabeth Dole Foundation, again, is centered around that, so I love seeing that everyone can come together to help the individual families. Bob Edwards: You've spoken about living in the moment when it comes to caregiving. What advice would you give to people currently struggling with practicing this during the pandemic? Lee Woodruff: Bob, that is the million dollar question here. And for so many of us who are already isolated, just adding the quarantine restrictions of a pandemic has been hard. I recently talked to a variety of different caregivers and tried to get some ideas that you could use for a 15-minute recharge. And while I realize that it's hard sometimes when, depending on the range of where a loved one is at in their own personal health, even a 15-minute bath, stepping outside and looking at the sun, looking up at the sky, changing the aperture, changing the surroundings for a moment, working on a jigsaw puzzle that you leave on a table, or a 15-minute craft, painting your nails. I think one of the best pieces of advice I got in this area was find the things that you know that make you happy and bring you joy, and figure out how you can even take a 15-minute slice of that. Bob Edwards: Any words of encouragement for caregivers listening to us right now? Lee Woodruff: You are not alone. There are so many wonderful communities to be able to reach out and not feel alone. I participate in the AARP caregiving Facebook site, which is growing, and I am just so amazed and in awe of the people who share their stories there, who ask for help, or ask for simple questions. What's the best phone for my dad? He's losing his eyesight. I think there are great ways thanks to the internet and the digital age that you can reach out, and you don't have to leave your house, find a friend, find advice, or just not feel so alone. Bob Edwards: You're an inspiration to a lot of people in this situation. Thanks for being with us. Lee Woodruff: Bob, thanks for always shining the light on the caregivers and all of those who are just going through their everyday lives that need to feel seen, so thank you for that. Bob Edwards: Lee Woodruff is co-founder of the Bob Woodruff Foundation. We'll leave a link to resources for caregivers in the show notes. Wilma Consul: Taking care of family members at home can come with considerable out-of-pocket costs. AARP research shows family caregivers spend close to $8,000 per year of their own money and even more for those caring for wounded warriors. We turn once again to Jean Chatzky, AARP's financial ambassador and financial editor for The Today Show. She's here to give us advice on how to plan for the high cost of caregiving at home, and she'll have some information on AARP's new financial workbooks for veteran and family caregivers. Good to talk to you again, Jean. Jean Chatzky: Thanks so much, Wilma. Nice to talk to you, too. Wilma Consul: First, what are the big costs that caregivers have to pay for that insurance typically won't cover? Jean Chatzky: They really run the gamut. A good chunk of the money goes for basic household expenses, mortgage payments, rent payments, or outfitting a house to make it more friendly to somebody who requires care. About 25% goes for medical needs that are not reimbursed, things like prescriptions or equipment like hearing aids or wheelchairs. Personal care expenses are on the list as well. The little things, soap and shampoo. Pet care if the person receiving care has a pet. There are travel fees that eat up part of the budget, and then some of the money actually goes for respite care, for the ability to pay somebody else to come in and give care for a little while so that the primary family caregiver can have a break, which is so important. Wilma Consul: Caregiving is already stressful, and then we've talked to Lara Garey, and she had to quit her job at some point, so I can just imagine the financial strain on people who are already caregiving and have to not earn any more income and then have these expenses. What can you tell new caregivers how to prepare themselves for these costs? Jean Chatzky: I think the best defense is a good offense. And by that, I mean you want to know, if you have an older parent or an older loved one that you think you may someday be a caregiver for, you want to try to prevent surprises. You want to understand the lay of the land. You want to understand how they're situated financially, whether there is a long-term care insurance policy, what their wishes are. That is such an important but also very basic question that often goes unanswered. Jean Chatzky: And if you can get a sense of what the resources are, then you can get a sense of whether there might be a gap where you'll be asked to step in, not just financially, but with your time. You're right about the stress. We have a new report from AARP and the National Alliance for Caregiving, and it tells us that one in five caregivers tells us that the amount of financial strain as a result of caregiving is extremely high, that three in 10 have stopped saving, that one in four have taken on more debt. It is not surprising to me that it is so stressful. Wilma Consul: How about legal considerations for caregivers? What should they plan for? Jean Chatzky: You want to make sure that the paperwork is as buttoned up as possible. It's really important to have legal documents in place, both for the person who's receiving care and for yourself, including medical directives and powers of attorney that allow you to make decisions for them if they're unable to make decisions about their own healthcare, that allow you to step in and manage their finances if they're unable to do it themselves. You also want to make sure that you have these pieces of paper in place because I think what COVID has taught us is that we don't know when emergencies are going to hit us, and often, they can hit us very, very quickly. And these forms all fall under the category of what we call advanced directives. Each state has their own forms, but they're all on AARP's website, so you can find them at AARP.org/Caregiving. Wilma Consul: AARP put together a financial workbook for veteran and family caregivers. Can you tell us more about this? Jean Chatzky: Yeah, I'm actually looking at it right now in my hands. It does. It's fantastic. And the reason that it's fantastic is because it is so detailed. It's the kind of workbook ... It reminds me a little bit of the workbooks that you used to get in school, where there's a question and then you fill it out. It's everything from who's the dentist? Who's the pharmacy? What hospital would you want to go to? Who are the backup caregivers? Who has power of attorney? Where's the will kept? These are the kinds of everyday questions that often go unanswered, and they're so important because when an emergency hits and when you have to step in and start taking care of someone, as well as taking care of their medical needs and their financial needs, if you don't have this information all in one place, you are completely stressed out looking for it. Wilma Consul: And this is accessible to pretty much everyone who can go on the site. Jean Chatzky: That's absolutely right. It's free. You can download it at AARP.org/CaregiverMoney. Wilma Consul: Are there any other resources that people should know about? Jean Chatzky: Boy, AARP has a ton of resources, and one of the things that we would like people to think about if they are a caregiver is to see if your loved one can actually hire and pay you for the care that you're providing. And we know that most states have programs that allow friends and family members to be paid for some caregiving duties. Fifteen states have expanded these programs during the pandemic. The majority are offered through Medicaid or through Veterans Affairs, and so you can reach out to a Medicaid office or a VA office or your local area on aging to find out if this is an option for you where you live. Wilma Consul: Did I miss anything else? Jean Chatzky: The only thing that I would further encourage people, in addition to downloading this great guide, is to just talk to the members of their family. Talk to your older parents, but talk to your siblings as well about what's coming, and don't just talk once. Open the door and keep talking. Wilma Consul: Jean Chatzky is AARP's financial ambassador and financial editor for The Today Show. She's also the host of two podcasts, Her Money with Jean Chatzky and Closing the Savings Gap. We'll have links for all the resources mentioned in our show notes. Jean, thank you again for talking to us. Jean Chatzky: Thank you so much for having me. Wilma Consul: Thanks to our new Steam producers, Colby Nelson and Daniela Cohen. Production assistant, Fernando Snellings. Engineer, Julio Gonzalez. Executive producer, Jason Young. And of course, my co-hosts, Mike Ellison and Bob Edwards. If you liked this episode, share it with a friend, and become a subscriber on Apple Podcasts, Google Play, Stitcher or other apps. Be sure to rate our show as well. For an AARP Take on Today, I'm Wilma Consul. Thanks for listening. Before the pandemic, our guest Lara Garey had family members and clinicians coming in and out of her home every day to assist in providing care for her husband Tom, a veteran of the Air Force who lives with ALS. Once quarantine restrictions began, all of that that help stopped — until recently. This week, hear from Lara about her caregiving journey. We’ll also learn about the , a free benefit for military and veteran caregivers from caregiving advocate Lee Woodruff, co-founder of the Bob Woodruff Foundation. Lastly, we’ll discuss the financial side of caregiving with AARP Financial Ambassador Jean Chatzky. For more information: Subscribe:

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