Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Dr. Laurie Ferguson  00:06

Hello, and welcome to thriving while aching, a podcast that inspires and offers insights on how to live a fuller life while navigating the challenges of pain. Last season, we went deeply into the journeys of adults who are finding joy and purpose while continuing to live with the inevitable aches of aging. This season we turn the spotlight onto the unsung heroes of many of those stories, the caregivers, and care partners who empower their loved ones to thrive whether that’s through nature escapades, preserving cherished family memories, or expressing themselves in art or music. And this season, Mike Eidsaune will be here to reflect, share from his wealth of experience and offer invaluable advice. So whether you’re a caregiver or know someone who is, this season is for you. Let’s dive in.

Dr. Laurie Ferguson  01:10

Today, we are joined by an incredibly resilient guest, who amidst life’s challenges has shown the profound importance of staying active, connected and ever curious. From Salt Lake City, Utah, I would like to welcome the inspiring Marilyn. Her journey of caregiving, adaptation and continued zest for life promises to offer insights and lessons for all of us. Hi, Marilyn. Hello,

Marilyn  01:33

Lori. Nice to meet you.

Dr. Laurie Ferguson  01:36

It’s great to be with you. So Marilyn, I’ve been so looking forward to meeting you and having this conversation. So just so our listeners know a little bit about you. Where are you located and tell us just a little bit about yourself?

Marilyn  01:49

Well, we live in Salt Lake City, Utah. I have lived here since 1978. I was raised in Missouri, went to the University of Missouri and became a teacher moved here with my first husband who was a geologist and raised our children and then he died due to his first heart attack when they were both in college. So I remained here because I was teaching at Salt Lake Community College by then I taught English composition. And I stayed here in Utah, and then met my current husband Joel, we met on a canoe trip amongst mutual friends a week long canoe trip, so we were married then several years later, and he is the one dealing with all of this arthritic pain now.

Dr. Laurie Ferguson  02:39

And what a shift that must be, I just love you met on a canoe trip, it said sort of a signature of your relationship it feels like is being active and being out. And now he’s had a lot of pain and a lot of difficulty. And you’ve both had to make big shifts.

Marilyn  02:55

That is the major difference in our lives is we’re not out canoeing and hiking, cross country skiing, as we have been in the past. And we’ve always enjoyed that. So it’s been a shifting of interests, you know, what we could do to be active and also to be active physically, socially, mentally

Dr. Laurie Ferguson  03:14

Oh and those are the big three Marilyn. Socially mentally physically. So tell me a little bit about what you do to stay active physically. We’ll talk about all three of them. But let’s start with what do you do to stay active physically?

Marilyn  03:26

Well at this time Joel is most comfortable bicycling. It’s non weight bearing, and we’ll talk about his issues with ankle, knee and hip and back and I broke my hip a year and a half ago. So going back to biking has been the easiest physical activity. So we tried to do that two or three times a week along a fairly level path along the Jordan River. So we’re in nature, but enjoying that exercise as well.

Dr. Laurie Ferguson  03:54

That’s just inspiring that you get out and on a bike even with pain, because it sounds like both of you are dealing with pain.

Marilyn  04:01

Well, we have Yes, mine is much better now. His is not so Joel will tell me when he’s ready to turn around.

Marilyn  04:03

Mm hmm. So you pace yourself. But you do get out and do things

Marilyn  04:03

Right. We do. It’s not a race. It’s a ride.

Dr. Laurie Ferguson  04:07

It’s a ride. That’s a great framing, not a race, but a ride.

Marilyn  04:21

And then twice a week. At some point in the winter. We signed up with a sports trainer. So we go together twice a week, and she has some experience with aging with elderly so she has been very good about having us move all parts of our body as much as possible.

Dr. Laurie Ferguson  04:40

So part of getting physical is also getting some support and someone knowledgeable to help with what you can do and where you should be careful. You know, as we age, the risk of injury can increase when we exercise. So it’s always important to seek out professional support to adapt to these new challenges to our routines. I want to welcome Mike Eidsaune to our podcast. Mike is the CEO of caregiving.com. That’s a platform aiming at creating better care experiences for family caregivers and their communities. With over 11 years of experience as a caregiver advocate, Mike has developed a deep understanding of the challenges and opportunities in the caregiving industry. Mike will be with us this season to provide his expert insight and deeper support for caregivers and their loved ones as they navigate their journey. In each episode, we’ll also have a discussion with Mike to discuss our learnings and takeaways from each episode. So Mike, you’ve been listening to Marilyn’s discussion so far. And Marilyn was just telling us that she and Joel started working out with a sports trainer. I wonder if you’d be willing to share some insights about the importance of finding activities that both people in the caregiver relationship can participate in and enjoy together?

Dr. Laurie Ferguson  05:48

Thanks Mike. Yeah, I think that one of the things that they’ve done here, getting a specific kind of attention with a sports trainer so that they can keep moving also really helps support, you know, all the changes and transitions that take a toll mentally as well. So what we’re going to talk about next, Marilyn, I think is what keeps you going mentally, because that’s another very important aspect of caregiving as you take care of yourself. And as you’re a caregiver for your husband.

Mike Eidsaune  05:48

Yeah, absolutely. Laurie, you know, I think that for family caregivers, the first step is really coming to terms or coming to grips with the situation. Once we understand what our limitations are, what the situation is, whether it be the condition, or the living situation, or our ADLs. And the limitations we have there, then we can start to think creatively about okay, how do we move forward. Marilyn talks a lot about that, like the ride. And I think understanding that you can tell that she’s got a good grasp on not only what her challenges are, and her husband’s challenges are, but you know, what they’re going to need to do in order to continue to move forward instead of just being stuck. And so for them, you know, coming up with this opportunity of engaging with a physical trainer was a great way for them to continue to do the things that they really like to do the things that you know, kept them connected for all these years parts of their identity, and really to translate that to the next phase of their life by bringing someone in that can help them continue to try to do the things that you know, they love so much, and they love about each other. I think that’s really, really important. And I think it’s really, really healthy. And I think for a lot of folks, I think you mentioned to me in a prior discussion, we had this loss of identity and this loss of self that can be really, really traumatic, not just for the patient, or the person who’s dealing with the chronic condition, but also the caregiver. How do they deal with that loss of identity? How do they support a person who’s going through that transition and loss of identity, that can be a really challenging thing. And Marilyn is doing I think, a really good job, her and her husband are both doing a really good job, I think of that transition, and it’s just gonna be important that they continue to talk about it and to share the frustrations, you know, show empathy to one another. So they can continue to again think creatively think outside of the box on ways they can continue to engage and live life to its fullest.

Dr. Laurie Ferguson  07:27

Well I think the fact that we can talk about anything we can communicate about anything we don’t always agree, we might have to back off and come back. But Joe has a wonderful sense of humor, very intelligent. And we’re both curious people, we both love to read, watch movies and TV series and discuss them as well. So I think that really helps.

Dr. Laurie Ferguson  08:15

Oh, the humor and the sort of staying active mentally. But also tell me a little bit more about your curiosity. How does that help you?

Marilyn  08:24

Well, it helps us because we are not specialists. We’re more generalists, like being interested in so many different things. We both read The New Yorker every week, and then we’ll discuss our favorite articles together. I’m in two book clubs. Joel is not he’s a better deeper reader than I am. So he remembers everything. I’m a fast skim through it sometimes. So you know, we have our differences, but we can share and be delighted by those. And I have learned so much from his patience with his pain and his acceptance of it and hoping for a better future. So just his attitude during what has happened since arthritis started to bother him three or four years ago with some issues he already had. But the arthritis made them too painful for activity, he can only walk or stand for about 15 minutes time periods.

Dr. Laurie Ferguson  09:20

And that’s such an incredible change for a person who was so active as he was.

Marilyn  09:25

Very active. Not only that he was a former mountain climber. So he has wonderful memories. But yeah, he’s hoping to get back now to the walking so we can hike together and cross country ski in the winter.

Dr. Laurie Ferguson  09:38

But you’re really underlying I think one of the biggest things which is you know what a difference in attitude makes and you’re talking about sort of some hopefulness for the future and you know, staying active and interested in the world and doing what you can and believing that will help you do more. It sounds like that attitude really sustains you.

Marilyn  09:58

So you know, each day is a different day. We have been doing a lot of car sightseeing that we wouldn’t have otherwise. For example, we took a 99 year old friend of ours on a mural tour. So, Salt Lake City has about 45 murals on buildings downtown. And they’re in sort of an in not an enclosed area, but not much distance. So we could stop admire, talk about em, and just have fun with that. So I’m a constant reader. So I’m always reading what are current events? Or what are opportunities around town as well, especially the free ones. So that of course, was it a mural fest that we did not attend, we went on our own, I just got the map offline, and we followed our own path. The same with the end of winter here we had a really heavy winter would have been fabulous skiing. It was fabulous skiing for those who were but we had a lot of avalanche danger, major road closures. So as soon as we could go up and see what that looked like, I think our interest in nature. And that gives us a sense of being outdoors, we could go up and talk about the changes the contrast with before and we’ve been up several times to see the developments in the canyons, even though we haven’t been hiking.

Dr. Laurie Ferguson  11:16

Car sightseeing, maybe it’s car hiking as well, with our binoculars we take our binoculars, it’s inspirational to think about the way you sort of track activities, and then how you can do them. So you stay involved. And you took a 99 year old friend with you?

Marilyn  11:32

Yes, she’s amazing. She’s a really good role model. She has her walker, but hasn’t lost anything up here. Very sharp, incredible. So it does help us to think of what activity could she do occasionally every month or two and then to do that with her.

Dr. Laurie Ferguson  11:49

And so is that part of how you stay socially active thinking about having friends like this?

Marilyn  11:53

Part of it, part of that. And then when Joel and I met, we were with 10 other people. I knew all of them except for him and his friend. He had no been hiked with them in the past, but I had made more recently with him. So we met amongst friends, and we are still very close to that group of friends. So we get together for dinner. We actually took our canoe out on the lake, I don’t know about two weeks ago. And so it was very mild. It was calm water to the picnic area. And then the 10 of us. We all had a picnic and then we canoed back to our cars. So it wasn’t our week long expeditions that we formerly did together, but it’s something so we’re trying to keep it going and we are going to Island Park, which is south of Yellowstone, we have a plan to go with those same people, two of them have moved to Port Townsend, Washington, two have moved to Southern Utah, but there’ll be joining us where we’ll stay three or four days and everyone fixes food and it has some hiking possibilities. I know Joel wants to be hiking there. And also there are some bicycling in the area. So instead of canoeing, which for 10 years, we did Thanksgiving canoe trips, someone would bring a grill, and we’d have turkey and then everyone brought everything else and we would canoe and then have a layover day where we had a big turkey dinner.

Dr. Laurie Ferguson  13:17

Ah, you know Marilyn, one of the things that’s so inspiring to me is how you and Joel have had such a full life. And yet at this point where you’ve had to make so many changes, you’re focusing on what you can do, not what you can’t do or used to do.

Marilyn  13:32

And I think we have some good role models. I mean, my 99 year old friend originated a bike ride here for all women. And so she’s been an inspiration that way. Well, his wife died last year, but the man he’s also about 98/99, he still walks every day. I mean, he may be kind of hunched over, but he walks every day. And in the past, we have done outdoor activities with him cross country skiing, you know, at his pace, but I think the fact that we’ve been able to have friends of different ages younger, older has really helped.

Dr. Laurie Ferguson  14:05

Wow, Marilyn, those are some amazing models. And I really appreciate what you’ve shared about how you’ve been learning to shift with Joel and learning his new boundaries, because that seems to be a very important lesson to be that kind of supportive care partner. Mike, what are your thoughts about that?

Mike Eidsaune  14:20

What I hear you know, when I’m listening to the discussion, I’m hearing the importance of community really, I think Marilyn being able to reach out and find inspiration within her own group of friends or community is critical. And I think it it tackles so many of the challenges we see in caregivers today. The idea of isolation, feeling like you’re alone on an island, the only person dealing with the situation that you’re in and the challenges you have, that can be a crippling thing for a lot of caregivers. So you know going out finding inspiration in the community finding others who are either dealing with a similar problem or have a similar challenge and watching them overcome it that can be really, really empowering for family caregivers. So that engagement in the community can be life altering. The other aspect is really just finding inspiration in things that maybe wouldn’t have inspired you otherwise, again, seeing it in the community is one thing, but then letting yourself be inspired by it and finding sort of those small little nuggets of inspiration in your everyday life and in your community and your group of friends, I think it’s really great. And then lastly, you know, again, kudos here, this idea of being able to be creative, think outside the box and look for things in your community and in your support system that can help you engage and stay engaged in what’s going on and being active. You know, the bike ride is a great example of this. It’s really great to hear and I think more and more, I think caregivers are turning to their communities to look for ways in which they can engage and stay engaged.

Dr. Laurie Ferguson  15:43

I really love your word inspired Mike. Because I think that it’s that willingness to sort of accept where we are now and make the change to that acceptance, and then see what inspires us and what’s happening. So Maryilyn, I want to get back to you. And I want to get back to all the activities you’ve had with Joel, we’ve talked about all the outdoor activities, because then I know you’re outside a lot. Are there activities that you enjoy at home as well?

Marilyn  16:08

Well, we do we just entertained are some neighbors Saturday night, we had a dinner party here. Takes me much longer to get it organized, done cleaned up, but it’s worth it just to keep in touch, you know, with different people as well.

Dr. Laurie Ferguson  16:22

Absolutely. Yeah.

Marilyn  16:24

A big change for me is that my life seems busier. Because Joel, he’s not able to do all the yard work he once did. You know getting down on the ground and up and down? And that kind of stuff I’ve been doing?

Dr. Laurie Ferguson  16:36

Yeah that’s another change that happens in this situation where you have to take on some things you didn’t do before? And how is that for you?

Marilyn  16:44

Well it’s easier this year than it was last year. Last year, I if getting up was a problem, you know, I had to have extra stools and trees to hang on to and things like that. So, but become easier. You know, we do have some tomatoes that are coming on now. So we’re excited about that.

Dr. Laurie Ferguson  17:00

So gardening and working outside along with being outside is part of your lifestyle as well.

Marilyn  17:07

That’s right it’s a preference actually.

Dr. Laurie Ferguson  17:11

I do think there’s something about being outside that much. It also helps sustain the mental.

Marilyn  17:15

I do too. I do too. And then I actually do an activity weekly. I try to go back to a water aerobics class three times a week. And I do that by myself, I’m up early in the morning, I leave. When I come back, then Joel and I had breakfast together, he usually fixes the breakfast. And we do that. So that has helped me have something else. And it’s with a number of the women and the men are different ages. But most of us have issues some place in our bodies, knee replacements or shoulder problems or whatever.

Dr. Laurie Ferguson  17:48

But it feels like having something that’s your activity where you really sort of just kind of be with yourself, again with other people as well. But something you enjoy just.

Marilyn  17:58

Exactly as much as I’d want to be, I want to get back to more hiking and walking. I haven’t done that as much because it’s easier to just go do an hour of exercise with the stretching and then come home and just do other things. But you know, I’ll get back to it. I want to be able to walk more than an hour because to go anyplace in the high mountains here. You need to do that.

Dr. Laurie Ferguson  18:21

So again, you’ve got a goal I want I think goals are part of thriving as well just you know, thinking Where do I want to be and how can I get there. Sounds like both you and Joel have some goals.

Marilyn  18:33

We do and Joel is active in our homeowners association. He’s on the board. And I’m active in the League of Women Voters. I have chosen not to chair a major part of it for several years. But I worked a teacher’s event last Wednesday, you know, interesting things happen all the time. You just don’t know how they’ll play out.

Dr. Laurie Ferguson  18:53

And you have to pay attention and sounds like you pay a lot of attention to what might show up for you and for Joel.

Marilyn  18:59

I do I think maybe we’re easily bored. So we’re just curious people too you know.

Dr. Laurie Ferguson  19:06

I think it’s more about curiosity and wanting to stay very engaged. So this has been a delightful conversation. I’ve really enjoyed it. And I think you exemplify thriving while aching. It’s been a privilege to hear about your life and to be inspired by all that you do.

Marilyn  19:24

Thank you, Laurie.

Dr. Laurie Ferguson  19:27

So Mike, that was quite the interview. Absolutely. What are your key takeaways or learnings from Marilyn’s care partner journey with Joel?

Mike Eidsaune  19:36

Yeah, I know you one of the things that jumps out at me right away is just the importance of community of for family caregivers, whether it’s to find inspiration, like we discussed or it’s just for that sort of emotional support. That community for her has been obviously instrumental in keeping that positivity and willingness to sort of continue moving forward and look for ways to adapt in her being able to see it happen in real life with others how has been instrumental. So, you know, I think that’s a really important one, that importance of community. What about you?

Dr. Laurie Ferguson  20:04

Well, I was struck over and over by the willingness to adapt, you know, not sort of stay in the way we’ve always been. And then just be, you know, sad or resentful that things are different. But that consistent ability to adapt to this and adapt to that. And I think being in community is part of that all the relationships they’ve cultivated over the years that they keep up in so many ways

Mike Eidsaune  20:26

Yeah their willingness to evolve. Super, super important. And you know, the idea of that loss of self that the idea that their identity is very active, very engaged in sport and athletic pursuit, they didn’t let that become crippling to them, or a life stop or a big barrier they embraced it, looked for ways to adapt and evolve, and just kept the train moving. That’s fantastic. And I think community is a huge part of that. So that’s great.

Dr. Laurie Ferguson  20:53

I think you noted in that community, their social connections, you know, the friendships that they’ve had over the years, the way they’ve adapted some of those, but they’ve also kept them up in new ways. And maybe even given those relationships, more importance.

Mike Eidsaune  21:06

Yeah, the last one, I’ll sort of drop in there. And it’s a continuation of both of those. It’s the willingness to be inspired by little things, looking for those little drops of inspiration in you know, the 99 year old that gets up and walks every day. And she sort of jokingly said, you know, it may be hunched over, but he’s still doing it every day. You know, letting yourself be inspired by that type of stuff is more than enough to you know, refuel the tank and keep moving every morning. So that’s I think that’s really great.

Dr. Laurie Ferguson  21:31

And you know, might just emphasize, it doesn’t take a lot. It’s just some drops of inspiration that can make that change.

Dr. Laurie Ferguson  21:45

And before we conclude this episode, we’ve worked on a new segment that we thought would help the caregivers and patients who are listening to us today, Mike?

Mike Eidsaune  21:53

So in this season of thriving while aching, we’ve decided to review each episode with a list of tools that family caregivers can use that are related to the episode itself. And in this episode, you’re gonna be able to find all the links to the tools I’m referencing in a toolkit that we’ll be launching on the website. So as we heard with Marilyn, and Joel, it is so important that we keep an open mind as we evolve. And as our situation evolves, and one of the ways that Marilyn was able to stay, I think so on top of that was opening up her mind in terms of what her community looked like really exploring where that connection comes from, and where her community now resides. Really understanding what’s going on in the community can be difficult when there isn’t an easy place to start that process. So a couple of ways that caregivers can really tackle this challenge is by just exploring the social avenues that are available to like Facebook, Facebook communities is a great way to engage with the community around them and to discover new avenues in which they can explore that connection that they lost when they lost some of that independence. Another really great tool to think about for family caregivers in relation to Marilyn and Joel’s story, or this idea of identity revolution, or evolution, I should say. For Marilyn, finding inspiration in her community was a big part of her mental wellness and staying on top of things and continuing to move forward. One of the ways family caregivers can do that is through YouTube. So discovering stories, hearing other people’s journeys, seeing what other folks are doing to combat sort of the isolation and the change of identity that they’re facing. YouTube can be a great place for that inspiration and a great place for family caregivers to identify what else is going on around them.

Dr. Laurie Ferguson  23:27

We hope that you found this episode inspiring. We want to thank Marilyn for sharing her experience and insight and we hope our discussion will help shed a light on the important role of caregivers in patients journeys. And of course, we want to thank you, our listeners. We believe that the journey of caregiving is as unique as each person it touches, and we are inspired by our guests who are such marvelous examples of helping their loved ones thrive. We encourage you to keep the conversation going, sharing your experience and questions with us by reaching out at podcasts@ghlf.org and be a part of our thriving community. Be sure to check out the toolkit for caregivers that Mike has shared at the end of each episode. For more enriching content and resources, visit the Show page at ghlf.org/listen. This podcast is made possible with support from Kenvue, sponsor of the Global Healthy Living Foundation. Until next time, may you and your loved ones Thrive With unwavering strength and grace.

Narrator  24:38

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Dr. Laurie Ferguson  00:06

Hello, and welcome to thriving while aching, a podcast that inspires and offers insights on how to live a fuller life while navigating the challenges of pain. Last season, we went deeply into the journeys of adults who are finding joy and purpose while continuing to live with the inevitable aches of aging. This season we turn the spotlight onto the unsung heroes have many of those stories, the caregivers and care partners who empower their loved ones to thrive whether that’s through nature escapades, preserving cherished family memories, or expressing themselves in art or music. And this season, Mike Eidsaune will be here to reflect, share from his wealth of experience and offer invaluable advice. So whether you’re a caregiver or know someone who is, this season is for you. Let’s dive in.

Dr. Laurie Ferguson  01:10

Today we have a special guest with us, Olivia. While she might not see herself as the primary caregiver. Her journey alongside her father is nothing short of inspiring from fostering deep connections through language and shared memories to ensuring her father remains empowered and joyful despite his illness. Olivia’s story reminds us that caregiving goes beyond just the physical aspects. She beautifully melds her role as a daughter with that of a caregiver, creating moments that are both poignant and heartwarming. Hi, Olivia.

Olivia  01:42

Hi, Laurie.

Dr. Laurie Ferguson  01:43

It’s great to meet you, and have you on the podcast. So thanks for being willing to come on. I know that you’re a caregiver alongside on the journey with your father. And I’m wondering if you could tell us a little bit about how that began and what that’s involved for you?

Olivia  02:00

Oh, yeah, I mean, I wouldn’t say that I am the primary caregiver by any means. I’m really just there for emotional, physical, any kind of support for both my parents as we go through this. Actually, I’m a little bit off my game this morning, because we had a little bit of a scare last night, my mom went to the hospital and my dad is you always have someone with him. 24/7. So it was a little bit of a shock, but I think everything’s gonna be okay. So I live with chronic migraine. And I’m kind of limited in what I’m able to do myself, which is why I haven’t been able to be as much of a caregiver as my mom. She’s really the primary. And we also did hire caregivers for my dad as well. When he was initially diagnosed, he was diagnosed with lung cancer. So yeah, I wasn’t sure what I was going to do. He did just have chemo last week. So he’s definitely I think, needing more support right now after treatment. So I was worried, but they always protest that they’re fine, because I think they’re worried about me. But yeah, I’ll check in after we do this and see what I can do today to be an extra hand.

Dr. Laurie Ferguson  03:03

Yeah well, that’s a lot for you to be alongside your parents and your dad’s journey with cancer while you’re also dealing with chronic migraine. So that’s a whole nother added layer to it. But I understand that actually, you’re a little modest about your role, because I understand you’re actually the chief fun and creativity officer.

Olivia  03:23

Well I like that title. I’ll take that title. It’s a good title, and how Yeah, I mean, that’s fair, I really try to find things that can be joyful for me with both my parents, especially my dad, you know, after he was diagnosed, I think it really forced me to take a good hard look at time and sort of the meaning of how time is spent and the quality of how time is spent. And I wanted to make the most of what there is, because that’s all there is. So yeah, so we try to have fun. When I asked him, What do we do to have fun, he was like, I don’t know, you fix my cellphone.

Dr. Laurie Ferguson  03:59

I’m gonna add technology to your title as well.

Olivia  04:02

I am the chief tech support as well. But we’re doing a lot actually. I’m really enjoying the time that I get to spend with my dad and obviously I’m limited myself because of migraine and I have to just hang around the house a lot. There’s not a lot that I can do all the time. But we’re able to even connect from a distance. I only live about 30 minutes away from them, but I call them every night, and we talk on the phone every night. And then every night when I was calling my dad, I knew he had started in home physical therapy, and I was pushing him to do his exercise. And every night you know, I’d say did you do your exercise did you do or did you get up and move around? And he’d say no, no or tomorrow, tomorrow, tomorrow? And finally he said to me, okay, text me tomorrow morning and just tell me dad get up and move around. And so you started texting him. Yes. And so I put a reminder in my calendar for every morning and it just says, Dad start moving around, but I said it on repeat for forever. So I just started texting him every morning saying, Hey, did you get up and move around? Did you do your exercises? And after a few days, of course, he was like, you know, you don’t have to text me every day. And I said, Yeah, but you know, it’s also a way to just check in and he said, Oh, well, if it’s a way to check in then okay.

Dr. Laurie Ferguson  05:24

Olivia that is such a beautiful example of I think being alongside in such a, you know, relaxed and caring way. You know, just send a text, you know. And I think some caregivers feel like they’re always nagging people. But that’s just, I’m checking in, I care about you very low key, but very, very helpful.

Olivia  05:43

Thank you. And I think you’re right, I also have the advantage of being the daughter. So I get a little bit more slack, I think, from him as far as how to push him. And he says to me feel free, I want to hear your opinion, tell me what you think I want to know. And I think he’s maybe coming in the package of a child, sometimes it’s a little easier to hear, possibly.

Dr. Laurie Ferguson  06:07

But you’re so consistent and loving with it. So I mean, I hear that and what are some other things that you’ve done?

Olivia  06:13

Well because we were texting every morning, he would respond sometimes just like with a little Tagalog phrase, he was born in the Philippines grew up in the Philippines, but he did not teach my brother and I Tagalog growing up. So we, you know, had no fluency in the language. I actually had an incredible opportunity in college to study Tagalog in school, which is how I started to learn. And so I would respond to him with my very basic words and sentences, and he would compliment my Tagalog and I said, Hey, we should practice Tagalog. And he said, Okay, do you mind if I correct you? I said, Of course, I want to learn I want to get better. So I started texting him in Tagalog every morning, and he would respond in Tagalog, but he would respond in full paragraphs. And I’d have to muddle my way through them, and figure out how to respond, learned a lot of new vocabulary, and then would respond in Tagalog and receive my corrections. And it’s been great. I mean, it’s really great for me to practice another language to keep that mental part sharp, that learning part. And also, I think it’s nice for him to communicate in his own language, something that might come easier to him. And yeah, I think it’s great for both of us, he’s getting to be a teacher, to me be a father, he has something to share, something to give, something to pass on to me. And it’s great for me to have that connection with him to be working on something together to be learning from him to be challenging myself.

Dr. Laurie Ferguson  07:54

And Olivia, that feels so important that you have found this where he gets empowered, you know, I think sometimes when a person is always receiving care, they begin to sort of get more passive or shrink in and you have found a way to sort of open an avenue for him so that he’s the expert. And he’s, as you say, the teacher, and it feels like a beautiful intimacy between you as well to be doing that.

Olivia  08:18

Thank you. Yeah, it really does. It’s special. It’s something I look forward to every day, according to my mom, he looks forward to it. He’s waiting by his cell phone. Well, for my text, and we continue these conversations over text all day long. You know, he’ll ask me what I’m doing today. And what I’m going to have for lunch and my grammar is poor. And there’s also in Tagalog, there’s like a formal and an informal way of speaking. And with a parent, you want to be formal. So it’s about not translating in the easy way, but using the more complex version of how to I don’t know if it’s conjugate but create the sentences in a formal structure. So yeah.

Dr. Laurie Ferguson  08:54

So Olivia, it sounds like you’ve developed such a routine with your father, a really supportive one, you can tell that your daily texts brighten his day. I want to turn to Mike Eidsaune and he’s our expert caregiver this season. Mike’s going to provide some of his insight and deeper support for caregivers and their loved ones as they navigate this journey. So Mike, I’m thinking about what Olivia shared about her father getting excited about receiving these messages from her the messages about exercising and teaching her Tagalog every day. Can you speak on the benefits that caregivers and loved ones receive when they keep up with a routine?

Mike Eidsaune  09:31

Yeah, absolutely. You know, it makes you smile sort of hearing Olivia talk about it. And it’s also I think, really important to when you’re listening to Olivia talk about the role she’s playing. Now she has this tendency to sort of downplay what she’s doing, as you know, texting in the morning, learning a language having fun, she almost describes it as she’s getting as much out of it as her father. But I think for a lot of caregivers, really understanding how impactful that tiny little interaction can be in the morning, whether it’s Just a text or a quick phone call, that can be so critical. The I think it was the CDC came out with a report not long ago that spoke to the negative impact of isolation and equated it to, you know, like a pack of cigarettes a day, like, you know, I forget what the exact analogy was, but it was that significant and that detrimental. And what Olivia is doing is she’s really countering a lot of that, you know, where her father could be alone and isolated and depressed. She’s really the solution the prescription to that, which is really amazing to hear. And it’s so great that she’s embraced it. And she’s finding such positivity in it, because obviously, their relationship has grown and is thriving as a result. So that’s good. I think having family caregivers really understand that even the littlest thing can be monumental in terms of impact. That’s a really, really key takeaway from me.

Dr. Laurie Ferguson  10:45

And the key takeaway for me in this is that she’s made it something regular, you know, somebody has once said, it’s not so important that you do a great thing. It’s more important what you do every day, and that she does this every day, so he can count on it. And she can count on it that makes such a difference. Absolutely. So Olivia, we’ve been discussing the importance of this routine, and this willingness to do this so called small thing, but actually knowing that when you do it every day, it makes a difference. There’s another thing you’re doing with your dad that puts him in the limelight of the teacher and the storyteller.

Olivia  11:19

Yes, yes. I mean, this is my passion project right now. It’s something I’m so excited about. I decided to create a podcast and I had been wanting to create a podcast for a long time, but I wasn’t sure what the content would be what the subject would be. But when my dad got sick, his friends who are Filipino tennis players started reaching out to me just to check on me every week and sort of really be a support system for me. And I just was so touched by that. And you know, I had always seen this side of them my whole life. But it was really reinforced for me this soft, caring side of these Filipino athletes. And I just realized that I wanted to tell their stories. And so I decided that my podcasts would be about Filipino tennis players. And the first season would be about my dad’s story, which is kind of an incredible story. I’m really excited to do that. I guess I’ll give a little background on the story. I won’t give it all away, because I’m creating a podcast on of course of course. But so my dad was born in the Philippines, he grew up there. He was born in the northern provinces, and moved to Manila with his mother and four sisters at the age of about nine after his father passed away, and they were very impoverished, they were all living in a one bedroom apartment, sleeping on the floor together. And his mom was a laundry woman, her job was to wash people’s clothes, hang them to dry, and then iron them. And this was the 60s, so not electric iron in the Philippines at least. And she made three pesos a day, which was just enough to support them. And I guess there’s also typhoon season in the Philippines, which prevented her from being able to work so she would often send my father to her employer to ask for an advance on money just so they could eat. And I know that they went hungry at times. And it was one of my dad’s goals to never be hungry again. So they lived in an apartment near a sports complex. And my dad would go to the sports complex after school, and he had a friend who worked there as a ball boy for tennis players. And he was wandering around one day and his friend was like, hey, you know, these hitting partners, they don’t have a ball boy today, can you step in and be their ball boy, he was like, what does it mean to be a ball boy? So he got a crash course in becoming a ball boy, and was a ball boy for these hitting partners that day and walked home with four pesos, which is more than his mother was making. And he gave them all to her. And from that point on, he became another provider for the family. So to make a long story short, I guess, and not to give too much away, he continued to go back and be a ball boy at the sports complex. And then he started teaching himself to play tennis, and then started playing junior tournaments and then won the junior title. And then the country started sending him to other countries to play for them. He played the Asian Games, Southeast Asian Games, and eventually won the title of the national open. So he really pulled himself up from nothing to become a champion.

Dr. Laurie Ferguson  14:37

What a story Olivia and it’s such a beautiful way that you’re finding how to help him connect with his life force that enabled him, you know, to make these decisions and take these risks and really put himself out there and as he tells that story, I would imagine there’s healing in it for him and for you to be telling it in a podcast.

Olivia  14:59

Thank you. Yeah. I mean, it’s really lovely when we sit down and do interviews. I’ve heard a lot of these stories before. But now I’m getting to dive deeper. And there’s details that he hasn’t shared before. And it’s another way for him to sort of teach me and really, his whole life has been about survival. And this newest challenge is just another obstacle to face with that sort of resilient attitude. And yeah, I learned so much from him about how to keep thriving to keep fighting. So it’s very special to me, and then you’re helping him connect with that. Yeah, I

Dr. Laurie Ferguson  15:32

And then you’re helping him connect with that. This is definitely a project that is close to your heart. And what a great way to strengthen that bond you have with your dad, but also to encourage his thriving in his resilience. Mike, as you hear Olivia, share about this podcast project, do you often see a therapeutic benefit for caregivers when it comes to family storytelling?

Mike Eidsaune  15:53

Oh my gosh, yes. You know, I’ve been in this space for over a decade that caregiving technology and sport space. And throughout that time, a lot of companies have sort of come up to help family caregivers capture those stories, just because of the importance of the relationship, the importance to the recipient. But what’s so innovative about Olivia is, the way she’s handled it is she’s not only doing those things where she’s able to capture the story for her and her children and the children’s children’s benefit, but making it into a podcast sort of doubles down to her father, how important his legacy is that she’s sort of making the statement that note Dad, people are gonna want to hear this story like how meaningful is that to him. And again, I think culturally as well as generationally, legacy is huge to folks in his generation. And so what a special thing for her to do, and what a special way for her to show her dad how important his story is, and how impactful it can be tof others. Amazing.

Olivia  16:50

Yeah, well, he is limited in what he can do. I’m also limited in what I can do. But he does really try to keep up his stamina and just wants to be active. So he tries to walk at least once a day, often twice a day. And if he knows that I’m going to be coming to visit, then he’ll save his walk to do with me. And we’ll walk And sometimes it’s just being quiet together being together. And sometimes, you know, we get into some of the deeper topics, again, about the family in the Philippines, since he was 11 years old, has been taking care of his four sisters and continues to support them. And you know, I realized from the vantage point that I’m at now that is a legacy that I want to continue. And so I tried to ask about what he does to support them and try to think about what I can do, should I need to step in to continue that? And yeah, it’s sometimes very deep conversations in a way that I guess you don’t get to do if you’re just sitting across from each other. But that added walking that meditation kind of feeling that brings a lot out.

Dr. Laurie Ferguson  16:50

Absolutely Mike, it really is incredible. The way it reverberates out this project, this pet project that is so important for her for her father, and then beyond that into the world. So Olivia, your passion for storytelling is something you’re exploring on your podcast. And I’m sure some of this also comes out of those long conversations that you have with your dad on your walks with him. Tell us what those walks are like.

Dr. Laurie Ferguson  18:22

Absolutely. And really, I think you’re helping me and I’m assuming our listeners think about all the facets of caregiving, you know, the ability to have conversations and connect with someone’s story. And I’m going to go back to that Chief Officer for fun and creativity, because these are a lot of creative ways to help a person stay in touch with who they are and not just have the identity of the person who’s sick or the person who can’t. You’re really through the conversations and the activities, you know, helping him stay connected to that. So what would you pass on Olivia? What have you learned and that you could pass on to others who are listening?

Olivia  19:01

Yeah, I think you make such a great point. Something that I’ve adopted saying is diagnosis does not equal death. So there’s life to be lived with. And after diagnosis. That’s just one part of what people are going through. And so I would really say search for what there is, aside from diagnosis from illness from the challenges because people don’t have to lose their identity to illness. And there are many things that you can figure out to celebrate together to be joyful together. It’s all about making the most of what is of the time that there is, because it’s all a gift to have right now is a gift to have. So making the most of that I think is the most important.

Dr. Laurie Ferguson  19:42

And it feels like that’s exactly what you are doing is making the most for yourself as well as for your father.

Olivia  19:49

Thank you. Yeah, I really hope so. I mean, I just enjoy so much the connection that we have the time we get to spend together and learning more about him and Yeah, honestly, it’s not the way that I think anyone would want to come to this realization of how to like maybe live and experience more deeply, but it has changed my life in a positive way to try to suck more out of the marrow of life and get more out of every moment.

Dr. Laurie Ferguson  20:13

So you are a receiver as well as a giver.

Olivia  20:16

Yeah I guess so. Yeah, I guess the hope is that we’re both getting something out of what we do together.

Dr. Laurie Ferguson  20:23

Wow. So any other words of wisdom that you would share?

Olivia  20:25

Yeah, I mean, I will say I tried to have a positive and optimistic outlook. And I think that’s something that I really learned from my dad, because he has had to face challenge after challenge and continues to face them with optimism, and fight and drive. And so I’ve learned that from him being a role model in that way. But I won’t say that it’s not difficult at times, and that it isn’t a struggle, and that it isn’t a lot to grapple with. So I would say that it’s okay to sit with the hard stuff. But what I tried to do with the moments that I get with both of my parents is to put that stuff aside so that I can really focus on what’s right in front of me.

Dr. Laurie Ferguson  21:05

And Olivia, how do you sustain your own resilient attitude?

Olivia  21:09

Oh, gosh, I mean, I really I do try to be optimistic and positive and focus on as I’ve been saying, like what there is, instead of what there is not, and trying to not ruminate and worry about what could be again, just focusing on what there is, but I guess I will say one thing that I love to do for myself is I’m a cyclist. I love cycling. And every year I do a century ride, which is 100 miles in a day.

Dr. Laurie Ferguson  21:36

Oh my goodness. 100 miles in a day.

Olivia  21:39

Yeah. Which it’s difficult. But it’s I mean, I just love it so much. It’s what I spend all summer preparing for. I’ve had some difficulties with migraine, preparing this year and last year, but honestly, I was doing pretty poorly last year with migraine, and I did my best time on the century ride and congratulations. So yeah, moving my body too I think keeps me positive

Dr. Laurie Ferguson  22:01

And having a focus, you know, something you are working towards, that’s very meaningful to you, that you move your body, but also you feel like you’re achieving something that’s significant.

Olivia  22:11

Yes. That’s such a good point. Having goals, something that I’m constantly driving towards keeps me yeah, that Eyes on the Prize kind of mentality. Yeah.

Dr. Laurie Ferguson  22:20

It’s having that sense of purpose. And it doesn’t have to be this huge, like life purpose. But the purpose of the ride, the research really shows that that is one of the things that helps us stay resilient.

Olivia  22:30

Yeah, and I will say, you know, you hit a point, every century ride, no matter how many you’ve done, and I’ve done seven, you hit a point where you’re like, I don’t know that I can keep going and you have to dig deeper. And it’s that point, that’s it’s really that point, that is the reason that I keep doing it. Because when you hit that point, and you find a way to get past it, it’s a reminder that you can really get past almost anything. And finding that dig deep moment is something that I try to come back to over and over again. Yeah.

Dr. Laurie Ferguson  22:57

And it feels like you’re helping your father do that too, find those dig deep moments.

Olivia  23:01

Thank you. I mean, I constantly feel like I’m learning from him in that too. But yeah, you know, I shy away from trying to take credit for it, because I just think he’s so incredible in his own right. But yeah, I hope that I’m doing my own little part to keep him driven, make him feel supported, to make him feel like himself.

Dr. Laurie Ferguson  23:19

And giving him a goal with the podcast. And yeah, with the learning the language and again, helping him kind of step into some new areas, which feels again, very life giving.

Olivia  23:29

Yeah, I’m really appreciate that. Yeah, I know that he looks forward to those interviews. And he’s disappointed if he’s not feeling well enough to do one. And it’s also a way for him to connect with other people in his life. Like I was asking some very specific questions about his parents and how they met. And it’s like, I don’t know, so he had to ask his sister. So that’s a connection for them to that isn’t even with me involved, or they get to reminisce so.

Dr. Laurie Ferguson  23:53

So the ripples go out? Yeah. Well, thank you so much for taking the time and sharing the richness of your story. And this very different way for us to begin to really consider what caregiving is when we’re helping those we love thrive even while ageing.

Olivia  24:10

Thank you so much much. That means so much. Thank you for asking the best questions I’ve ever been asked about this whole situation, truly, it’s so nice to focus on the positive.

Dr. Laurie Ferguson  24:21

So Mike, this has been another fabulous journey with someone who’s doing inventive and important things as a caregiver. What are your key takeaways?

Mike Eidsaune  24:30

You know, I’ve got two key takeaways from the interview with Olivia. The first is how important the small things are. The idea of texting. She was doing a sort of an exercise to make sure he’s doing his exercises and physical therapy, but that really effortless interaction led to so much more and such a positive impact in his life and their relationship. So those tiny little things that all caregivers can do, all family members can do, I think is really, really critical. And I think that segues nicely into one of your points which is consistency right? The regularity. Right, the regularity. And then I think the last thing is just the importance of storytelling. Olivia talks about how important the legacy of her father is to not only her but to him and encapsulating that in a podcast was just a really, really an innovative and special way I think, for her to go about doing that. I think for most family caregivers, you don’t have to create a podcast in order to sort of have that type of impact and most of us won’t do that. But just asking those questions, sitting down with tea and or coffee and snacks, and just asking questions about their life so that they can tell that story. That’s going to have that same sort of impact of not only do I find your story to be very important, but passing on your story, to my loved ones, and to other family members, is what I’m trying to accomplish here. I think that message to older folks in this generation is really, really incredible. And I think it has a lot of powerful benefits.

Dr. Laurie Ferguson  25:51

And from that, I also take that the importance of helping someone physically is one part of caregiving, but helping someone mentally and emotionally. So storytelling, a sense of a legacy, a sense of my life has mattered and is important. And it’s important to someone I love, you know, not just sort of generically.

Mike Eidsaune  26:09

Yeah, and then one last thing out is a key learning. And I think this broadly applies not just to family caregivers, but to those who may be supporting a family caregiver or know a family caregiver, the importance of positivity, caregiving more often than not can feel like a very negative, very trying stressful, guilt ridden activity. And if we can turn toward the positive aspects of it every once in a while, it can be a reprieve for family caregivers, it can feel like a little bit of respite in ways we can do that or just asking leading questions that get folks talking about that positive side of it, the time you’re getting to spend, you know what you’re learning about your loved one, you know, those aspects of family caregiving are always there. They’re always present. But oftentimes, they don’t get talked about just because they’re not the most pressing issue of the moment. So you know, the power of that positivity. And, you know, obviously her reaction to the interview itself and the questions you asked, I think really speak to that.

Dr. Laurie Ferguson  27:02

Yeah that was sort of amazing to know that just paying a little attention to someone who’s a caregiver, inviting them to talk about that, giving them some space as they are giving space to their loved one makes a big difference all the way around.

Dr. Laurie Ferguson  27:22

And to conclude today’s conversation, in this season of thriving while aching, we’ve decided to close each episode by providing suggestions of tools that family caregivers can use. So Mike, why don’t you tell us about the tools you can suggest after listening to our guest today.

Mike Eidsaune  27:36

So for our story with Olivia, we find that there’s a really a couple really interesting aspects to her story that caregivers can really take away and utilize. One is storytelling, the importance of storytelling and legacy goes a long, long way in both engagement with our care recipient, as well as passing on the messages that that care recipient leaves with us, there’s a couple of different interesting tools that family caregivers can utilize to capture that story or just even invoke a response. A couple of them are putting together photo books, putting together biography books using a Voice Memo app on our phone system to record those interactions. But I think the most important part of this whole process is just being intentional about it, whether it’s exchanging letters with our loved one or recording a zoom call, all of these things will do what we’re trying to do, but it’s making the decision to do it and executing on that decision with our loved one. Another thing we can utilize in this process is a platform like storii, s t o r i i. It’s a really interesting software that sort of makes that process of story capture much easier. And something that I’ve seen come out here in the last few weeks, that’s become much more popular, it’s a paid subscription. By no means is a caregiver need to use it, it just might make the process a little easier. The second thing we heard with Olivia that I think is really important in a tool that family caregiver should think about taking away is the importance of the small things. Utilizing something as simple as a daily text message can go a long, long way in to engage that individual and to make sure that they’re feeling noticed and seen something as simple as a text or even a letter, as I mentioned before can go a long, long way to engage our loved one every day.

Dr. Laurie Ferguson  29:09

We hope that you found this episode inspiring. We want to thank Olivia for sharing her experience and insight and we hope our discussion will help shed a light on the important role of caregivers in patients journeys. And of course, we want to thank you our listeners. We believe that the journey of caregiving is as unique as each person it touches. And we are inspired by our guests who are such marvelous examples of helping their loved ones thrive. We encourage you to keep the conversation going, sharing your experience and questions with us by reaching out at podcasts@ghlf.org and be a part of our thriving community. Be sure to check out the toolkit for caregivers that Mike has shared at the end of each episode. For more enriching content and resources visit the Show page at G H L F.org/listen This podcast is made possible with support from Kenvue, sponsor of the Global Healthy Living Foundation. Until next time, may you and your loved ones Thrive With unwavering strength and grace.

Narrator  30:21

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Dr. Laurie Ferguson  00:06

Hello, and welcome to thriving while aching, a podcast that inspires and offers insights on how to live a fuller life while navigating the challenges of pain. Last season, we went deeply into the journeys of adults who are finding joy and purpose while continuing to live with the inevitable aches of aging. This season we turn the spotlight onto the unsung heroes of many of those stories, the caregivers, and care partners who empower their loved ones to thrive whether that’s through nature escapades, preserving cherished family memories, or expressing themselves in art or music. And this season, Mike Eidsaune will be here to reflect, share from his wealth of experience and offer invaluable advice. So whether you’re a caregiver or know someone who is this season is for you. Let’s dive in.

Dr. Laurie Ferguson  00:06

Today, I’m excited to introduce a truly inspiring guest, Aisha. Aisha is a young caregiver who embarked on an unexpected journey when her mother was diagnosed with frontotemporal dementia. With incredible tenacity and dedication, she navigated the unique challenges that were posed by her youth and cultural background, filling gaps in available resources by creating a community for those who are caregiving as she was. Today she shares her deeply personal story, the lessons she’s learned, and the hope she’s found along the way. Hi, Aisha. It’s great to have you on the podcast thriving while aching, and I’m just delighted that you’re able to be here. So one of the things we talk about is what it’s like to be a caregiver for someone you love. And I know that’s been a big part of your journey. And if you could tell us a little bit about how you came to be a caretaker?

Aisha  01:11

Certainly. Well, when I was about 27, my mother was diagnosed with Frontotemporal dementia. I had never heard of the term before I knew very little about dementia. But I did know that things like wandering were prone to occur. And that folks who were diagnosed with any form of dementia often benefited from someone being in the home with them. I had just started my first big girl job. And after a conversation with my father, we determined that between the two of us it made the most sense for me to stay home. You know, my father needed to maintain health insurance since my mother was only 57 at the time of diagnosis as frontotemporal degeneration is the number one form of dementia for those under the age of 60. And it just made the most sense for me to take on a role. I did not know the term caregiver or caretaker/care partner going into it. I just knew that I needed to be there with my mother as she exhibited severe personality changes in confusion, memory loss, and all of these symptoms that we often associate with cognitive impairment or decline.

Dr. Laurie Ferguson  03:11

Oh Aisha that just sounds so incredibly difficult.

Aisha  03:14

It certainly was. This was a very foreign territory for my family and myself, and certainly something that I would not say I was well equipped to encounter.

Dr. Laurie Ferguson  03:25

You know, the title of the podcast is thriving while aching, and some of it is heartache when you’re a caregiver. And alongside that I can imagine. So you left your job, you stayed home, and what was it like for you?

Aisha  03:40

Well it’s interesting. Initially, I looked at myself as a companion, someone to kind of keep an eye on my mother. Help her with cooking and cleaning and making sure that she remained safe while doing those activities. She always loved to cook. Was a phenomenal baker, had her own baking company. And so I assisted with those sorts of activities. As the disease progressed, those tasks became more involved. So it included things like financial management and eventually assistance with activities of daily living like bathing and feeding and dressing. And as her mobility decreased, that also included helping her walk and then eventually transfer from bed to wheelchair, from wheelchair to shower, etc. And, you know, as the disease finally reached its final stages it returned. Was sort of full cycle to that companionship and once she entered hospice care, and today actually marks the two month mark since her passing.

Dr. Laurie Ferguson  04:36

Oh my. What an incredible journey and I know that you were very young and one of the things that you’ve said is it was challenging to find any kind of resources to help support you.

Aisha  04:48

Oh 100%. So much of the material, particularly with a condition like frontotemporal degeneration is geared toward older care partners. So those caring for a spouse or a slightly older loved one, although this isn’t early onset form of the disease, anything really within the realm of dementia and cognitive impairment is not only geared at older folks, but particularly those who are potentially more fluent than I was, you know, someone entering my first job, I certainly didn’t have the resources to support my parents in the way that maybe someone who’s older and more established in their career and their financial standing might very culturally, I would say, nonspecific materials, I think that people experience illness and experience care through the lens of their cultural experience and their lived experience. And I found that much of the material that was available was not tailored to my experience as an African American young woman. And so being able to find spaces where I felt as though I could relate to the materials proved to be very difficult in the beginning, and it certainly is still challenging today.

Dr. Laurie Ferguson  05:57

So Aisha tell me a little more about what it was like to not find those resources that you needed. And what you did about it.

Aisha  06:05

Certainly, while not being able to pinpoint resources that reflected my needs as a Black woman, as a young person was really challenging. And something that was quite frankly very discouraging. Just not being able to quickly grab ahold of something that would be helpful for my family was very disheartening at the time, understandably. So that being said, I really set out to create what I could not find in the void. And so at the time, I came up with an idea to develop a support system specifically for young millennials of color and those who belong to the LGBTQ community, because there is also a missing aspect there. And I created Our Turn 2 Care, which is a support system and had resource guides for financial resources as well as a support group. And eventually we merged with the Love Labor Project where we had weekly support groups, and it really was a sea change for me. Being able to tap into people and resources that reflected in a more accurate way, the experience that I was having not having access to the financial resources or the social support that I desperately needed. Eventually, I connected with Caring Across Generations, which is a policy advocacy organization that fights to gain better access to resources for family caregivers, people with disabilities, and older adults across the US through policy change, through culture change, and through organizing. And I’ve really found opportunities to uplift these communities in ways that I hadn’t previously been able to. And it has really been empowering for me, and being able to really provide a safe space to discuss the challenges that we experience as a nation, many of which are overlapping and intersectional. But really, to be able to discuss those as a Black woman and the unique perspective that I hold was really, really important to me. And being able to do that with Caring Across has been really an experience that was life changing. I will say that the financial pieces of the support that I was looking for, it was really kind of a shocker. There’s this widespread understanding across the US that when you turn 65, you just kind of receive everything that you’ve ever needed. Right? And that’s a misunderstanding, I think a lot of people have, namely that Medicare does not cover long term care. This is something that many people are very, very surprised to discover. Medicaid is the number one provider of long term care in this country in terms of what is government funded. And so unfortunately, unless you are eligible for Medicaid, meaning your income is below a certain threshold, which varies from state to state, you’re really stuck kind of in the middle. And that’s where my family found itself with, you know, collective income really pricing us out of being able to tap into some of these long term supports and services until we discovered Medicaid waivers that are available in various states. I’m located in the state of Georgia, and thankfully, through some deep deep research and a lot of support from X subject matter experts in the area, I was able to make sure that my mother was eligible actually for this particular Medicaid waiver, and she was eventually able to receive in home care, but every few months or so was certainly a journey and making sure that she remained eligible, making sure that she got the number of hours that she needed, making sure that there was enough help available because we also know that direct care workers are woefully underpaid, do not have access to things like health insurance and paid leave for themselves. And so there is a shortage of care jobs that are really worthwhile for a lot of people. It’s not so much that there’s a direct care worker shortage. It’s the the jobs really do not provide the stability that people need in order to live and to raise their families and to provide for their own aging loved ones, and those with disabilities. And so it’s really about the systems of care, being in desperate need of repair. And being able to be a part of those conversations has really lifted my spirits and given me purpose.

Dr. Laurie Ferguson  10:19

Aisha you bring up so many important points here, and the one that I really want to focus on is what you’ve brought up about there being a lack of caregiving resources that are geared towards not only young people, but also Black, Indigenous People of Color, and those from the LGBTQ community as well. I’m here with Mike Eidsaune, our expert caregiver. And Mike’s here to give some of his insight and deeper support for caregivers and their loved ones as they navigate the journey. Mike, what are some of your thoughts on that particular point about that lack of resources geared toward particular caregivers?

Mike Eidsaune  10:54

You know, for family caregivers, one of the key things to be able to find resources or identify resources that fit your needs, is one being able to see yourself in the solution being provided. And I think this is what sort of Aisha speaks to really, really well is this lack of representation. And frankly, just tailoring the solutions and tailoring the message. So that it feels more relevant to specific population of people is really key. It’s one of the areas we at Caregiving.com, have tried to expand on even with our own content on our site, but there’s a lot of work. And I think part of the challenge that you face here is that no one caregiver is alike. You know when you’ve met one caregiver, you’ve met one caregiver. And that obviously presents a huge challenge for us in the industry who are trying to sort of solve and fill these knowledge gaps. But it also presents a tremendous opportunity to create real impact and to create real positive change if we can really embrace this idea of tailoring our messages, tailoring our solutions to the specific audience that we’re trying to reach. And we can have a much bigger impact at the end of the day. The reality for family caregiving support in the country is that it’s looked the exact same for 20 years. It’s the same articles, it’s the same resources, it’s the same associations, putting out the same articles and the same resources over and over again. That becomes very void in the space and frankly, it leaves people feeling very lost. It leaves them feeling isolated as Aisha mentions. So I think for me, that’s one of the areas and frankly, the response I would give to family caregivers is you have to find it yourself, unfortunately, in your community. And rather than turn to those national associations that you would sort of expect to have your back or expect to have the resources for you really just need to turn towards your community and find others who are in a similar position. And that’s one of the areas again, that we at Caregiving.com we’re trying to do more of which is that community connection piece, and Aisha is a big part of that.

Dr. Laurie Ferguson  12:46

So Aisha, this is such a tremendous story. And as I listen, I’m sitting here just marveling at the strength you have, the grit, the persistence to do all that research, and that reaching out to get what you needed to find it in your community, even at a time when you were providing care for your mother. But there’s so much there around the need that caregivers have for not just emotional support, but the financial support and the sort of surround of how nobody can do this all by themselves.

Aisha  13:16

100%. You know you hear the old adage that it takes a village, it’s really that’s not a misnomer. That’s really something that is very true. It takes a strong and fortified network of people who have the knowledge and the resources themselves to really be of proper support. Many people will say, Oh, anything that I can do to help. But the reality is it does take a certain amount of expertise, a certain amount of insider knowledge to navigate these government systems, the forms, the phone calls, so many pieces and components that come into play. And I am very privileged to have a network like that.

Dr. Laurie Ferguson  13:56

Well, you’re privileged to have it and you are amazingly self starter to create it because it sounds like you created it not just for yourself, but for others as well. And I’m hearing in that you were very clear, that gave you a sense of empowerment, which is something I think caregivers can start to feel frustrated or stuck. And you really found ways to keep yourself alive and motivated as you were caring for your mother. You know we’re thinking about thriving while aching in this podcast. And so I know that you were alongside helping your mother thrive. What would you say were some of the things that the two of you enjoyed doing together that kind of kept your spirits up and kept her spirits up?

Aisha  14:36

Well, you know, that’s a great question. Music and the arts have always played a big role in my family and have always been a part of the way that we spent time together. And so that certainly did not change over the course of my mother’s disease progression. And so we certainly incorporated a lot of singing, a lot of listening to oldies and old school music and gospel also played at significant role in fortifying our faith as a family as well. And really spending that quality time, everything from, you know, coloring books for adults to watercolor painting. These are the sorts of things that really brought a lot of peace and early on in her disease, being able to go to, you know, live performances and enjoy that as well. These are tools and methodologies that have been shown to also have a positive effect on those impacted with Alzheimer’s disease and other forms of dementia. And so we really ran with that and leaned into that piece of our lives together and spent a lot of time just really enjoying the arts. I know that television stations like PBS, for example, will have phenomenal, you know, programming that’s free and available that we really enjoyed and appreciated. Nature was also something that we took a lot of joy in. And we live in a condominium that there’s a green belt behind us. And there are a lot of creatures and just beautiful sounds from birds. And so these seem like relatively insignificant kind of everyday ordinary things. But they are things that became such an integral parts of our lives, and something that we really began to cling to, particularly as my mother progressed in her disease. And as her cognition began to decline, music in particular was something that remained constant even until her last days, that really always uplifted her spirit, the melodies were something she could always connect to. And so it was really something beautiful that we could hold on to and enjoy together as a family.

Mike Eidsaune  16:33

Aisha, if I could, I’d love to jump in. I think what you’re talking about is so beautiful. This idea of finding not only commonality, something that you can both enjoy together, but you’re touching on something that for the last 5 to really 10 years, our industry has been discovering has tremendous scientific backing, you know, this idea of music therapy in dementia has gotten a ton of research and a ton of light shed on it in the last five years. And there’s even some great solutions out there that specifically speak to your situation and how family caregivers can utilize tools like seeing fit and others to actually drive really meaningful impact and improvement in cognition and behavior and outcome in many ways. So incredible job that you sort of through your experience and through your research, were able to identify that. I think one of the other interesting aspects and challenges family caregivers face is they don’t necessarily have the insight that you or I do into what’s available out there. So navigating resources, navigating systems, in order to identify these solutions can be a real barrier for folks. It’s one of the things that we’re trying to tackle at Caregiving.com, but with a little bit of Google sleuthing, I think you can find things like this that help address the challenges that many of us face every day when we’re providing the care and doing the tasks that are required of us. So kudos to you and also I think one of the things that a lot of family caregivers that are listening can take away from this and apply to their own everyday sort of situation.

Aisha  17:57

Oh, entirely. Entirely. I’d certainly, I’m a big fan of you know, music therapy. And really, you know, the idea of forest bathing and sound baths, and all of these different methodologies really provided some much needed therapeutic soothing for me, as well as I went on this journey.

Dr. Laurie Ferguson  18:17

Because that, again, I’m hearing that even as you were in this challenging time, you really were taking care of yourself in some significant ways and needed to do that to have the resources to help your mother thrive.

Aisha  18:31

Oh, certainly, it’s certainly something that I needed to learn how to do over time, I would say during really the majority of the time that I spent taking care of my mother, I failed to seek out and maintain ways to care for myself. And I finally reached a point where I realized if I am not well, and if I am not looking after myself than I can’t be fully present for my mother. And so I really did begin probably about year seven or so to be intentional about the ways that I took care of myself. And included in that was, you know, again, these tools like nature and music and the arts overall. And it made a tremendous difference. It didn’t mean that the challenges disappeared, but it did provide an outlet and a source of joy.

Dr. Laurie Ferguson  19:24

And a source of joy is so essential when you’re on that journey. Both for you and for the person you’re caring for. To have that, I mean, that really is part of the definition of thriving, to have some joy. So you’ve been on a long journey, you’ve created resources, you’ve helped others access resources, you’ve done an amazing job. What would be some advice or wisdom that you would share with those who are in the caregiving shoes right now?

Aisha  19:52

Such an important question because there are so many answers that vary based on one’s individual experience. Right? But that being said, I would always say that it’s vitally important to prioritize, you know yourself as a caregiver. To prioritize your own wellness, even if it’s something as simple as making sure that you remain hydrated. Right? That’s, that seems, again, like a very simple thing, but something that you can do for yourself. And I think really seeking out ways that you can take five minutes a day to just have a moment of peace, a moment of meditation, a moment of prayer. Listening to a favorite song, listening to podcasts. Anything that you can do to kind of turn inward for a brief moment, I found makes a difference. The journey can be very difficult at times. But I think in addition to taking care of yourself, many times caregivers, particularly those who are maybe children caring for their adult parents, or other aging loved ones can experience resentment or bitterness about the circumstances that they’re in. And, you know, I certainly understand that relationships do vary. But I know one of the biggest lessons that I learned probably around year, I would say, year six or so was that I had one set of parents, and I needed to be as present as possible for their lives. And that opportunities, like job opportunities and opportunities to engage with my peers in different ways, would hopefully come around again, and I’d have the opportunity to have a career that I’m proud of, and to go to concerts or whatever it was that I felt as though I was missing at the time. literally, in my 20s I realized that, gosh, I don’t get to do over, I don’t get another chance to spend this time with my parents as challenging as it may be. And so I really, at that moment, reprioritized that time and reprioritized my role as a caregiver and began to look at it as a gift, rather than as much of a burden. That didn’t mean that I wasn’t very tired at times, and that it wasn’t incredibly emotional. But I was able to really find the gratitude that I think was missing early on before I guess I reached a level of maturity that helped me to understand the importance of the time that I had and how precious it was.

Dr. Laurie Ferguson  22:11

And one of the things that I’m hearing Aisha, that I think is also important to this caregiver journey is that it’s not a straight line. There’s a learning curve, there’s an arc to it and there are days that are better than others. There were months that are better than others. And then there dips and then you learn something. I’m hearing a lot of wisdom from you about really sort of being patient with yourself, how you reframe your attitudes, you know, you said you had to sort of learn to prioritize yourself, when you realized you’d really kind of run out of gas run out of juice to do what was needed and had to kind of recalibrate. So really appreciate that sort of learning arc that you’re describing.

Aisha  22:50

Absolutely, Laurie, just as with grief, or with any other journey, it is indeed not linear, and being able to understand that and to give yourself grace around that and understand that as humans, we may experience things differently than the human next to us. And that’s okay, and that this journey may look very different for different people for a number of reasons, whether it is access to resources, whether it is your lived experience and individual identity. But understanding your journey in becoming more comfortable with it is really key to having the best experience possible.

Dr. Laurie Ferguson  23:24

Aisha, thank you so much for sharing all of this lived experience and wisdom with us as we think about being caregivers and helping our loved ones thrive and then thriving ourselves. We appreciate your time, all that you’ve shared. I want to conclude this conversation with you by asking if you could share the resources that our listeners might find helpful.

Aisha  23:42

Oh certainly there is Caring Across Generations, which is great for policy and advocacy work and taking action to make change to our systems, others, the National Alliance for Caregiving at Caregiving.org that does some really incredible work and has a number of accessible resources available. There’s also Caregiving.com, which has a number of resources available and support systems as well, that have been very helpful. Hilarity for Charity has some wonderful support groups as well. So I would say those are probably my top resources at the moment when things that I’ve found helpful in my journey.

Dr. Laurie Ferguson  24:19

Thank you and one of the things I appreciate certainly from your research is that these are resources that have spaces for many different kinds of caregivers for many different situations and so they will be very accessible regardless of situation our listeners find themselves in and where they come from.

Aisha  24:37

100%. It’s been my pleasure and honor to share this space with you and I appreciate you having me on. Thank you so much.

Dr. Laurie Ferguson  24:48

So Mike, I know you have a lot of information and expertise in these particular areas that Aisha’s been talking about. Particularly navigating complex systems and I’m wondering what your take aways from some of the conversation have been?

Mike Eidsaune  25:02

With Aisha, having worked with her, having been a fan of hers for a long time and just her evolution as an advocate. You know, one of the things I think a lot of caregivers can do to improve their situation and frankly, just improve their own experience is educating yourself, educating yourself about the condition for one, just understanding what that progress looks like. There’s so much information out there about conditions themselves, which I think can be an incredible asset to family caregivers. Beyond that, Aisha’s done an incredible job of navigating resources, which is a little bit more difficult. A lot of resources can be state based, county based condition based. She talked about Medicaid waivers, that’s a mountain of a challenge to climb in itself. But finding your community again, and we’ve touched on this before in previous episode, finding your community can be a big advantage there as well, too. So finding folks that have been through similar situation and leaning on their experience as your own to help you get up to speed a little bit quicker, that can be really important. And I think then lastly, the big takeaway from Aisha. And I think it’s everybody who comes into contact with Aisha is just what’s possible when you take it on directly and aggressively and as assertively as she has, something really beautiful can come out of it. And for her, it was an entire career. But it’s an entire mission now that she’s dedicated herself to which is really amazing to see, especially with someone so young, being willing to sort of jump into this space that typically doesn’t have a lot of folks that look like her. I think that that’s really amazing to see and inspiring.

Dr. Laurie Ferguson  26:32

And I’m inspired by something you’ve talked about in another episode. And that’s the importance of positivity. Her willingness to embrace all kinds of ways of supporting her mother, not just activities of daily living, which obviously is important, but the willingness to art and music and open up those things that were still meaningful nature, the things that were meaningful to her. But the positive attitude that she brought to it is inspiring to me. The other thing that I want all of us to just sort of take a breath about is, you know, she helps us really understand the complexity that caregiving can have when you get into these complicated areas of finance, and payments and insurance. And we’re sort of hearing her at this point in her story, but I imagine and you’ve counseled this all the way along, Mike she took it step by step, you know, she didn’t start with the mountain, she started with the steps and that that caregivers, you know not to get overwhelmed by all that that takes but to know just sort of day by day, piece by piece, you can move forward in the way she has.

Mike Eidsaune  27:34

No, that’s such a good point, the challenges can seem very insurmountable if you look at them all at once. But you know, she’s a perfect example of you know, if you just lay it all out, and then just tackle one item at a time on your list, you can get through it. And there’s a lot of examples of caregivers that have done that. And so looking for those examples, and then just again, taking it step by step, you can really break it down. And all of a sudden, what felt like an impossibility and a drowning sensation can turn to a breath of fresh air.

Dr. Laurie Ferguson  28:04

And as you have said repeatedly, and I think we can’t say it enough that one of the things that can help us do that is the support of our communities to look around. And maybe it’s support that’s right physically there. But maybe it’s support you get in other ways as Aisha has done and so I think just support helps you navigate and manage as a caregiver.

Dr. Laurie Ferguson  28:29

And to conclude today’s conversation in this season of Thriving while Aching, we’ve decided to close each episode by providing suggestions of tools that family caregivers can use. So Mike, why don’t you tell us about the tools you can suggest after listening to our guests today.

Mike Eidsaune  28:43

One of the amazing aspects of Aisha’s story is the willingness to go deep and to dig in and identify where there might be a knowledge gap that exists. For family caregivers, you know, we aren’t trained in this process. We’re not trained in the journey of being a family caregiver. Identifying all the gaps in knowledge that you know likely are only going to be known to a doctor or a nurse practitioner. So for our Aisha to go deep on both condition and what resources are available for her mom in her state, I think that speaks to the power that family caregivers have. That can be intimidating for a lot of folks, but if we just start we just start the process, we’ll find that that information is actually readily available to us. It just takes a little bit of online sleuthing. A good place to start in your state, obviously on Google is by looking at the Area Agency on Aging, the Department of Health Services. Those websites usually offer some good navigational points on where to look for resources and information about Medicare coverage and Medicaid solutions or support. Beyond that most states have branches or chapters of national associations. So Area Agencies on Aging I mentioned was one. The Alzheimer’s Association has state chapters AARP has state chapters. Caregiving.com- We offer a lot of local and geographical based resources. You know finding those can be a little bit more effort. But just by starting at some of the national than working your way down, you can typically find information that’s more relevant to you as an individual in your state.

Dr. Laurie Ferguson  30:15

We hope that you found this episode inspiring. We want to thank Aisha for sharing her experience and insight, and we hope our discussion will help shed a light on the important role of caregivers and patients journeys. And of course, we want to thank you our listeners. We believe that the journey of caregiving is as unique as each person it touches, and we are inspired by our guests who are such marvelous examples of helping their loved ones thrive. We encourage you to keep the conversation going, sharing your experience and questions with us by reaching out at podcasts@ghlf.org and be a part of our thriving community. Be sure to check out the toolkit for caregivers that Mike has shared at the end of each episode. For more enriching content and resources, visit the show page at ghlf.org/listen. This podcast is made possible with support from Kenvue, sponsor of the Global Healthy Living Foundation. Until next time, may you and your loved ones Thrive With unwavering strength and grace.

Narrator  31:26

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Dr. Laurie Ferguson  00:06

Hello, and welcome to Thriving while Aching, a podcast that inspires and offers insights on how to live a fuller life while navigating the challenges of pain. Last season, we went deeply into the journeys of adults who are finding joy and purpose while continuing to live with the inevitable aches of aging. This season we turn the spotlight onto the unsung heroes of many of those stories, the caregivers, and care partners who empower their loved ones to thrive whether that’s through nature escapades, preserving cherished family memories, or expressing themselves in art or music. And this season, Mike Eidsaune will be here to reflect, share from his wealth of experience and offer invaluable advice. So whether you’re a caregiver, or know someone who is, this season is for you. Let’s dive in.

Dr. Laurie Ferguson  01:10

Today, I’m thrilled to introduce Alyssa, a young woman whose chance encounter led to a deep and meaningful caregiving friendship with an older adult, through walks, shared hobbies, and the bond of a beloved dog. Alyssa story reminds us that caregiving can take many forms. And sometimes it’s the unexpected friendships that leave the most profound impact. Welcome, Alyssa. Hi, Laurie, it’s great to have you on the program today. You know, we’re talking about thriving while aching, and this particular series is about caregivers. So we’ve talked to all kinds of caregivers, but you have a very unique story in the relationship that you have. Can you tell us a little bit about the person that you have a caregiving or care friendship with?

Alyssa  01:57

Sure. Yeah, more of a caring friendship. But just an older friend that I made in the woods one day, who I take hiking a lot. Wow.

Dr. Laurie Ferguson  02:05

So you met her in the woods? That sounds intriguing. How did you meet her in the woods?

Alyssa  02:12

Do you ever just like pass by someone that has that sparkle about them. And you’re like, I want to be friends with this person. That was kind of just her vibe when I started passing her in the woods every now and again, her and her husband. So that’s how we started to get acquainted. There’s this rusty bench on a trail that we hike at. And I started to see them every now and again at the bench. So one day when I saw her, I said hi, where’s cow, her husband, and she said he had just passed away. And I started like, hysterically crying because I just knew they were special, you know, huh. And it caught me. So off guard, I didn’t even realize he was sick. So she started to come looking for me in the woods. And I, of course, she’s much older. So I’ve said, this is not safe for you to be out here alone, we’ll exchange information and you can come hiking with us because I hike with my pack of dogs. So that’s how we got acquainted. It turns out that the rusty bench is the last place she was able to walk to with her husband, so it’s like a really sentimental spot for her. And it’s where we met. So it’s a special rusty bench.

Dr. Laurie Ferguson  03:13

Wow, what a lovely story. And I know what you mean about seeing somebody with that sparkle, but you must have it as well that she came looking for you.

Alyssa  03:22

I think when I love someone, I’ll do anything for them. And it’s that feeling it doesn’t mean I have to have known you forever. It’s that’s like when you meet someone special. You know, I’m keeping this person around. Hmm. So yeah, and she is she’s really special and sweet. And just her demeanor when you pass by just just someone that that you can’t help but smile back at and I just love that about her. But I love a lot of things about her.

Dr. Laurie Ferguson  03:42

So now you meet her regularly to take these walks.

Alyssa  03:47

Yeah, right now she has a herniated disk. So she’s kind of been sitting out. But well, before that happened. We were meeting at least once a week. Mm hmm. Either I pick her up and she rides with us. But it’s not good for her back right now with her injury. So when she comes out now she has been meeting us but she’s moving slower. Hmm. But the doctor said it’s healing well, so once she’s back to her norm, she’ll be coming back with us once a week. And she’s pretty sturdy on her feet out there. Surprisingly, she can keep a good pace and keep up with the dogs so.

Dr. Laurie Ferguson  04:15

Wow, but wise of you to say you know, it’s not great to just be out here by yourself and to make that arrangement with her. So she has you as a part of that walking, which is so important to say stay strong is to be able to go out and walk and to enjoy nature.

Alyssa  04:30

I also just wanted her company. So I was like, Hey, come on with us. It’s funny because the day that she told me he passed away I texted my family group chat and told them about her because I was like I’m hysterically crying this couple that reminds me of Nana and Papa. Because like we were all really close with my grandparents who recently passed and my sister was like, oh, you should be friend of the older woman. And I was like, Oh yeah, you’re right. I should. So that’s how I got the idea to exchange info with her and start bringing her out with us.

Dr. Laurie Ferguson  04:56

I was gonna say the friendship sounds real and there’s something so profound. One of the things we know about aging and living with pain and loneliness is that one of the best antidotes is to have a friend, you know someone you can count on someone you can see. And so it sounds like that friendship is very important and healing for both of you. What do you think that you have learned from your friendship and your time with your new grandmother that you might pass on to others?

Alyssa  05:24

I guess you never know who’s gonna change your life. Like she was just some random person that I walked by in the woods. And that’s happened time and time again before with me since I got Kernel because he’s really like a community gatherer He really brings everyone together if you like dogs do you love Kernel if you don’t like dogs you hate Kernel, but the people that we pass it love dogs. Like it’s crazy. How many amazing friendships and relationships I have in my life because of the dog. Hmm. And grandma’s just another one just special person I met through the dog. I take it

Dr. Laurie Ferguson  05:55

I take it she likes Kernel. Yes, she loves dogs. So that was another bond between you. So you never know who’s going to change your life and be open to that. It sounds like clearly having your beloved dog with you is part of that for you.

Alyssa  06:08

Yes. And just on the note of grandma loving dogs, the pack accepted her right away.

Dr. Laurie Ferguson  06:12

So it seems like the love of dogs is a big part for both of you in the relationship. And I’m going to turn to Mike Eidsauni, our resident caregiver who’s with us this season, and Mike’s here to provide his expert insight and his support for caregivers and their loved ones as they navigate their journey.

Mike Eidsaune  06:28

Yeah, you know, Thanks, Laurie, I appreciate it. And hearing the story is one it’s obviously very heartwarming. But two, I think one of the important takeaways here that I think about is the importance of companionship, you know, whether that’s human companionship or the love of a pet. You know, I think that, you know, that can be an incredible piece of this, this journey for folks in filling a gap that may have been left when you lose someone close to you. You know, Maslow talks about his hierarchy of needs. And I think that companionship piece plays a you know, a really key part of that, when it’s gone. You know, there’s a lot of documentation and research that points to the detrimental impacts that can have. So finding and filling that gap can be incredibly important for family caregivers, as well as for care recipients. So you know, there’s pet therapy, and there’s a lot of those things that exist. But you know, it doesn’t have to be something formal, you know, this idea of finding someone in you know kind of playing a key role in their life, I think is as simple and as beautiful as it gets. So really, really powerful from Alyssa.

Dr. Laurie Ferguson  07:26

It really is. And it does speak to something you’ve mentioned along again, the Surgeon General’s report on loneliness, and loneliness isn’t just another person. It can be animals as well.

Mike Eidsaune  07:37

Yeah, 100%. 100%, I have two dogs upstairs in my house that I would love to lend to anyone who is willing. No, I’m just kidding. I love him. I love him or hate him, and I love him.

Dr. Laurie Ferguson  07:49

So Alyssa it sounds like it’s a it’s another connection. It’s another way you connect with people is through the love and enjoyment of the animals. It sounds like that’s an important part of this relationship as well. And I understand that you also have some interests that you share, like photography.

Alyssa  08:07

Oh yeah. She used to be a photographer as well. She had a portrait studio. And you’re a photographer. Yes, photography was my first business before the dog stuff came along.

Dr. Laurie Ferguson  08:16

And so what do you talk about with photography,

Alyssa  08:19

She was a film photographer. So she tells me more about what it used to be like. I tell her more about like, what the current trends are, oh, she took a video of me with the dogs. It was horizontal. And I was like, turn your phone vertical. Because horizontal never cuts the picture so small. And she’s like, it’s a different world today.

Dr. Laurie Ferguson  08:37

But what a great thing to share sort of giving you some history and some background and you giving her some tips if she wants to go digital. Yeah.

Mike Eidsaune  08:44

Yeah, you know, I’d love to jump in on this. I think you know, one of the things that strikes me about what Alyssa is saying here is finding this common ground and really doubling down and leaning into it, you know, as a caregiver, especially when you’re talking about different generations not you know, spousal caregiving, when you’re talking about two very different generations that are engaged in this relationship, finding common ground can feel like an impossibility. But as Alyssa points out, there is that shared interest and for her, it’s photography, and you know, being able to sort of pull these shared experiences or not shared experiences, and then finding the commonality between them. It’s a great connection point for them. And obviously, in their case, it’s given them plenty to talk about plenty to lean into plenty to relate to. And even those moments where she’s sort of talking about how to frame the picture, you know, for Instagram and for social today. Like that’s not something that I think a lot of folks are used to in that generation. So It’s so heartwarming to hear and experience it feels almost like the setting for a movie at the end of the day where you have these two sort of obviously very different age individuals finding this sort of commonality and sharing this life experience together is really heartwarming and sort of just fun to hear and listen to and be engaged in

Dr. Laurie Ferguson  09:58

It is and then to add the shared hobbies that you know something that interest that they can share that leads to some great conversation. And I think even a deeper connection. And I think that can happen for other caregivers and the people that they love and care for when they find, as you say that common ground. Alyssa, I’m sure you’ve also probably heard some really interesting stories as you’ve gotten to know her.

Alyssa  10:19

Career and personal she just has great stories. I just love hearing like stories about life. So yes, she was telling me about when she was leaving her ex boyfriend and he was like crying about it. And she said to his dog, I’m really gonna miss you, Seamus, Goodbye, Bill. Like leaving the dog is the hardest part. I just love hearing her talk.

Dr. Laurie Ferguson  10:41

And I would imagine having someone to talk to who loves hearing her talk is a very important thing

Alyssa  10:47

For everyone. Yeah, for me to like, she’ll listen to me talk too.

Dr. Laurie Ferguson  10:51

Right. You know, we think about caregiving in lots of ways. You know, we think about it as you know, helping somebody with their daily chores of daily living or activities of daily living, we think about it as helping somebody with financial things or even helping with mobility, but you’re bringing a whole different aspect to what it is to be alongside someone and offer friendship, which is a very deeply important aspect of giving care. And I’m wondering if part of what happens in your friendship with the storytelling and the walking and enjoying the dogs is that there’s some laughter.

Alyssa  11:24

Oh yes, there’s a lot of dark humor.

Dr. Laurie Ferguson  11:27

And that’s good for both of you to have a laugh.

Alyssa  11:29

Light humor and dark humor. Do it all? Yes, everyone in my circle is very funny.

Dr. Laurie Ferguson  11:35

Makes it again, that’s good medicine.

Alyssa  11:38

Yeah, the best medicine.

Dr. Laurie Ferguson  11:39

So one of the things I’m wondering about is you know, you’ve said that your new grandma is hiking in the woods and you know, she’s keeping her mobility up. How is she dealing with aches and pains?

Alyssa  11:51

Yes , okay. It’s really hard. The physical I think partly the pain or the physical issue with her back and but also like the emotional pain of knowing she’s found something she really cherishes and can do and enjoy exercise wise and companionship wise, she’s not able to do right now. That’s really hard for her. What’s been good and enjoyable for all of us is Mother’s Day. Well, actually, that was right before she got her injury, but Kernel’s birthday, which is mid summer, when her back was really bad. We went over to her house for dinner or one day just like to visit and that’s really fun to just spend like quality time together. She loves seeing the dog. It’s not going hiking with the pack. But it’s quite special for her to get a visit from Kernel because she likes to like walk him around the building and stuff, huh? She’s like, can we go down to get the mail? I’m sure like she wants I don’t know, she just like wants to walk and she just enjoys his presence. And I guess that’s with her physical issue right now. That’s like the exercise for the day is going down to get the mail.

Dr. Laurie Ferguson  12:51

Well, that’s not a little thing. If you have a herniated disc.

Alyssa  12:55

For sure. So easy stuff like that, where she lives close to us. So it’s easy for us to pop over there. And I’m an introvert. So for me like one visit and so she’s like, for me, like one visit from one friend is enough for the day or a few days. Like I just don’t need that, you know, like so just like a little gesture like that. That was also enjoyable for us is helpful to her particularly right now.

Dr. Laurie Ferguson  13:19

And one of the things I hear you saying Alyssa is you pace yourself with her to do what physically she’s able to do and to help keep her moving. You know, for somebody who hikes in the woods to have a walk to the mailbox be a big deal is, you know, she’s having a tough time, but the companionship and the sort of nudge? Yeah, let’s do it. Well, it sounds like your visits with new grandma are priceless for both of you, and the effort that you make and the effort she makes to be out and to stay mobile makes a big difference. Definitely. Well, thank you so much for coming on to the podcast and for inspiring us and sharing your story.

Alyssa  13:57

Yeah. I really hope and expect enough of humanity to say that anyone in the situation I was in should have just done the exact same thing. didn’t take anything. If anything, it was beneficial to me because I got such a special new friends. So happy to do it and hope other people would too.

Dr. Laurie Ferguson  14:14

Well thank you. Thank you. Wasn’t this an interesting journey that Alyssa took us on Mike? I mean, it’s not the usual way we think about quote unquote, caregiving, but what a difference she has made. Yeah, what did you take away from this?

Mike Eidsaune  14:29

You know, their story, it sparks so many different emotions. You know, I think there’s a lot to unpack. I think from a caregiving perspective, the role that Alyssa has had and the impact she’s had on another life and then, you know, the positive aspects she’s gotten out of it. I think, though, that for me, it’s sort of speaks to the the beauty of human nature when you just leave yourself open to new experience and to you know, friendship, that sort of the beautiful things that can come out of that I think are genuinely positive here. In terms of like, you know, takeaways for a family caregiver. You know, I think that this idea that Alyssa sort of really speaks to of finding common ground, and how important and how valuable and sort of leverageable that can be in that relationship. You know, I think of my experiences as a caregiver to which there have been many over the years. But one in particular with my grandfather, you know, when I got to spend time with him, I always made an effort and sort of considered it a little bit of a challenge to do this, where I would poke and prod him with questions about his experience in the war and being, you know, a submariner and not just asking him sort of the general but but really digging into that second layer and asking him to elaborate on certain events or experiences from that time, I found one it to be very fascinating, because some of the stories he would tell were brash in nature. So I always found that sort of fun, but two, you could see this sort of moment with him, where as I was leaning in, he mirrored that, and he would lean into the story, and it created this really beautiful connection between me and him that maybe otherwise wouldn’t have been there unless I was sort of prodding him about what that experience look like. And so one of the key things I think, for caregivers to take away here is to really lean in, don’t just ask one question asked the follow on and the follow on in the follow on and see where that takes you. And that I think can lead to like analysis case, this really this mutual love and shared hobby, um, that otherwise had she not lean in to the experience and really been curious, she would have never gotten to

Dr. Laurie Ferguson  16:28

absolutely, and I also love that part of her leaning in was even engaging in this friendship, there are so many ways we define caregiving. And this is an unusual one, because it’s a friendship that occurred sort of out of the home out of the regular routine, but became, as you say, very meaningful and supportive. So there are many ways to be a caregiver. And so it’s another way to sort of take away it’s not all in the home activities of daily living, it’s many, many faceted in the way that we can help those we love thrive.

Mike Eidsaune  17:00

100%. And if there’s one thing that we take away from this episode, and frankly, this series, it’s this idea that you don’t have to check the box. Yes, I am a caregiver in order to be able to have the impact that family caregivers have. And Alyssa is a perfect example of that. I think if you asked her Are you a family caregiver, it wouldn’t equate in her mind. She’s not going to put that on the resume because she just doesn’t see herself in that role. But when you dissect what she’s doing and the positive impact that she’s having, she absolutely is. And she’s playing an incredible part in this person’s life. And she’s I think, quite frankly, probably doing a lot more good than she really realizes at the end of the day.

Dr. Laurie Ferguson  17:38

She and Kernel they’re doing it.

Dr. Laurie Ferguson  17:40

And to conclude today’s conversation in this season of thriving while aching, we’ve decided to close each episode by providing suggestions of tools that family caregivers can use. So Mike, why don’t you tell us about the tools you can suggest after listening to our guest today.

Mike Eidsaune  18:02

One of the great things we heard from Alyssa story was the power of companionship and how far that can go in improving one’s well being. This is a tough thing for family caregivers, I think especially those that are caring for their loved one who may be farther away that feeling of guilt not being there not being able to to sort of be that person for your loved one can often cause a lot of challenges grief, emotionally and physically in many cases that can manifest. So one of the things I think as caregivers we can do, one of the tools we can look into is places where our loved one can go to get that companionship to reengage with community or engage with community in their local area. A great place to start for family caregivers in this research is the National Institute of Senior Centers NCOA. So NCOA.org. This is the national body that represents senior centers across the country. And that can be a great place to start in identifying where those local community resources are for your loved one. Typically, a senior center is a place it is funded locally by local government to put on activities to host local events. And typically Monday through Sunday, you can find things that are going on there that you could typically engage with and many times they’ll offer free transportation. So that’s a great resource a great place to start. Another option for family caregivers would be an organization like Papa it’s, which is sort of home care but more of a companionship program where you can hire individuals to sort of just be companions to your loved one. They can help them with local grocery shopping, chores, that type of stuff, but also just be in presence with that person to ensure that they’re not having that loneliness that otherwise would come if they weren’t. So those are two solutions that family caregivers can explore to help tackle this loneliness and loss of companionship.

Dr. Laurie Ferguson  19:35

We hope that you found this episode inspiring. We want to thank Alyssa for sharing her experience and insight. We hope our discussion will help shed a light on the important role of caregivers and patients journeys. And of course we want to thank you our listeners. We believe that the journey of caregiving is as unique as each person it touches and we are inspired by our guests who are such marvelous examples of helping their loved ones thrive. We encourage you to keep the conversation going, sharing your experience and questions with us by reaching out at podcasts@ghlf.org and be a part of our thriving community. Be sure to check out the toolkit for caregivers that Mike has shared at the end of each episode. For more enriching content and resources, visit the show page at ghlf.org/listen. This podcast is made possible with support from Kenvue, sponsor of the Global Healthy Living Foundation. Until next time, may you and your loved ones thrive with unwavering strength and grace.

Narrator  20:52

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Dr. Laurie Ferguson  00:12

Hello, and welcome to Thriving while Aching, a podcast that inspires and offers insights on how to live a fuller life while navigating the challenges of pain. Last season, we went deeply into the journeys of adults who are finding joy and purpose while continuing to live with the inevitable aches of aging. This season we turn the spotlight onto the unsung heroes of many of those stories, the caregivers, and care partners who empower their loved ones to thrive whether that’s through nature escapades, preserving cherished family memories, or expressing themselves in art or music. And this season, Mike Eidsaune will be here to reflect, share from his wealth of experience and offer invaluable advice. So whether you’re a caregiver, or know someone who is, this season is for you. Let’s dive in.

Dr. Laurie Ferguson  01:10

In today’s episode, we’re joined by Cora and Danielle, two caregivers who walk us through their experiences of practicing self care while dedicating themselves to their loved ones. We delve into the challenges they face and the importance of planning for life and for mobility issues, especially when dealing with physical constraints. Hi, Danielle. Welcome to Thriving while Aching. And let’s start with you. Danielle, if you could just introduce yourself so that our listeners know a little bit about you. And particularly I’m interested in about your background and how you became a caregiver. Thank

Danielle  01:46

you again, Laurie, for having me on the podcast. I’m Danielle Miura. I am a Certified Financial Planner professional. And I’m a financial educator who focuses on helping family caregivers.

Dr. Laurie Ferguson  01:57

Wow and how did you start and sort of move your career in that direction?

Danielle  02:01

I opened a financial planning firm, and I was working with young professionals. And while I love doing that, I shifted when I became a family caregiver myself and I started to research the needs of family caregivers. I was just, you know, nerd myself, I was Googling a bunch of things like research papers and what financial knowledge is available for family caregivers. And I found there to be very limited financial education resources for family caregivers. And as I went down that rabbit hole, I said, Hey, like this doesn’t make sense. Family Caregivers make up 20% or more of the population. Why isn’t there financial education for caregivers? And that’s when I shifted my niche over to family caregivers.

Dr. Laurie Ferguson  02:49

Wow. So can you say a little bit about how you personally became a caregiver what happened in your life?

Danielle  02:56

I’m a sandwich generation caregiver. So I help an elderly grandmother and I help with my mom with her health. As we sometimes know caregivers are sometimes invisible caregivers due to our loved ones having invisible diseases, and my mother has an invisible disease, you’ll never realize that she has an autoimmune disease, but she lives with it daily, and I help support her in caring for her and my grandmother.

Dr. Laurie Ferguson  03:27

Wow, Danielle, so you’re balancing a lot. I mean, talk about multigenerational. That’s a lot of caregiving. Now, I’m going to turn to Cora, our other guest. I know that you’ve been on a caregiving journey with your mother also. And we’re talking about thriving while aching today. And it sounds like you’ve been a big part of helping your mother thrive. So can you say a little bit about the journey you’ve been on and how it’s unfolded for you and your mother?

Cora  03:54

Well, she’s 70 years old, and she recently fell three times in the past five months, which has definitely affected her hip and her movements and all that as well. She has chronic fatigue syndrome as well as dealing with migraines. So um, I’ve been living at home with her, I pretty much do everything for her. I cook, I clean, do the laundry, I take her dog out, I feed our cats pretty much everything I do for her. So when she comes home from work, she can just rest. I find it really rewarding. It kind of gives me a sense of purpose dealing with my own mental and health issues like migraines. I kind of didn’t go to work for a while so I kind of felt useless in life. So now being able to help my mom to raise she helped me when I was little I kind of feel like it comes full circle.

Dr. Laurie Ferguson  04:45

That’s a great way to frame it. Now both of you have emphasized the importance of not losing yourself in that caregiving process. So I want to ask how do you ensure that you maintain a balance of caring for your loved ones and taking care of your own needs. Let’s start with you, Danielle.

Danielle  05:01

That’s sometimes a difficult question. As an invisible caregiver, it’s like you want people to see that you’re there that you’re really a caregiver. But sometimes when you’re caring for somebody else who has invisible diseases, it’s hard to be as out and open about those things than other people are. In the last couple of weeks, I’ve actually realized that caregiving has put more of a toll on me than what I realized. Usually, I’m the one who’s in the ER with my loved one. And I was the one who had to be in the ER alone last week, and that was kind of a pivotal moment in my life, where I realized that I need to take care of myself more.

Dr. Laurie Ferguson  05:47

Absolutely. That is a great recognition. I mean, you talked about invisible caregiving, and you can even become invisible to yourself through the process. What about you, Cora? It seems like you do a lot for your mother, I want to hear a little bit more about that. How do you ensure that you maintain a balance between caring for your mother while also taking care of your own needs?

Cora  06:09

I’ve always lived with my mom just due to circumstances and just really just wanting to be around her. But as she’s gotten older she has definitely lost some of her independence that she wishes she had, and she keeps pushing herself, which sometimes makes it worse. So just trying to get her to limit herself and not overdo certain things. Sometimes, if her hip acts up, she needs help getting off the couch. Or sometimes when we come home, she’ll sit on our stair stoop. And sometimes to get up, she’ll need to grab me on my shoulder, I need to grab her hands and pull her up there for a while I let it consume my life where I’d be home with her. And that’s pretty much it, I just stay home and watch over her. But now I’m starting to realize, you know, I’m just turned 25 I need to get my own life started. So now I’ll come home, I’ll cook her dinner and all that, and we’ll watch some TV together. But then I’ll go and do my own thing for the rest of the night.

Dr. Laurie Ferguson  07:06

And that takes some intention on your part because it’s easy to just kind of be in the routine of you know, just being alongside. And I’m going to turn to Mike Eidsaune our expert caregiver who’s with us this season, Mike is here to provide his insight and deeper support for caregivers and their loved ones as they navigate their journey. Mike, you’ve heard what Cora and Danielle, both expressed when caring for someone, it’s sometimes overwhelming and it can be hard to find that balance between caring for your loved one and taking care of your own needs. In your experience. What would you recommend to our listeners to maintain that balance and thriving when you’re taking care of a loved one?

Mike Eidsaune  07:42

Yeah, of course, Laurie and I think I’m going to shock anyone with this answer about the importance of self care as a family caregiver. What’s important here is to understand that as a family caregiver, there’s a lot of advice out there about the importance of self care. And obviously all of us would go Yes, I know how important it is. But I can’t prioritize that over what I need to do to support this individual. And that’s where we get stuck in sort of this quagmire. And as an industry, I think one of the things we failed to do for family caregivers is understand and be empathetic to that situation, that relationship situation. And so when we talk about as a family caregiver, the importance of self care, what we really try to do is be logical, and really define what self care can be, because it doesn’t always have to be go to the spa for an hour and get a massage. And I think traditionally, that’s always been the case, you’ve got to take time out. And the reality for family caregivers isn’t that. So with that in mind with that sort of empathy as sort of the starting place. You know, one of the things we like to do is have family caregivers focus on this idea that part of their role, part of their job, because you know, oftentimes family caregivers will put the job ahead of self care. Reframing it to say, Well, part of your job, part of the priority you have to make is self care. Because if you aren’t taking care of yourself, you’re not going to be able to take care of this individual in the way that you should be. And that sort of that reframing of self care as not just a nice to have not something you’re doing because you want to selfishly, but because it is part of the role. Think of it as like a prescription, your doctor is prescribing this to you, you have to do it as a part of your role as a family caregiver. I think that can be one of the ways that folks open up to it. And then from there, I think self care can look different for every individual that’s receiving it. So it can be 10 minutes by yourself flipping through TikTok, it could be a 15 minute walk, it could be whatever it can be. It’s up to the individual to define that. But it really is sort of taking that moment and identifying what is it that I need? Where is my tank empty? And making sure that we refill it and not just because it’s something that you’re doing selfishly, it’s something that you’re doing as a part of your role and as a priority.

Dr. Laurie Ferguson  09:50

And Mike, I could not agree more and I also feel like this is where your constant drumbeat of community comes in because I think the isolation really contributes to that imbalance it is all up to me or I have to do it all myself when we can stretch as caregivers, even though we may be too tired or we don’t feel we have the time but to know we’re in a community and that people are happy to help, you know that asking, they can’t mind read. But if you can ask somebody to do something very specific, could you sit with this person become my loved one for an hour? Would you be willing to pick up the groceries or the dry cleaning, or whatever it is people will do something specific, we have to be willing to ask and I think asking for help is part of self care. Absolutely. And now I want to turn back to our guests. Every caregivers journey is filled with unique challenges because every caregiver is unique. Cora, you mentioned earlier how caregiving gave you a sense of purpose. But you also mentioned how much you’re doing for your mother, do you have activities that you do for yourself that bring you joy?

Cora  10:52

Um, I’ve been going to the gym every day, before, I used to just watch TV with her for hours until we both go to sleep. But now I’ll go home, make dinner, watch her soap opera, or an hour or two. And then I’ll go to the gym and have the rest of my night to myself. I used to be really into that a few years ago. And then I got out of it. But now starting to get back into that. And it’s definitely affected my mental health as well. I’m so much better now. And I feel like it helps me be able to even help my mom too. So there’s some days where it’s hard to lift her. But now it’s getting a little bit easier.

Dr. Laurie Ferguson  11:23

Exercise certainly is a great tool for self care. Danielle, it seems like you’re facing a different set of experiences, since you’re caring for both your mother and your grandmother. Can you tell us a little bit about that? What does that entail in terms of planning?

Danielle  11:38

Yeah, so for my mom, it’s planning for the retirement and ensuring that they’re able to go on trips and vacations and live their life. Now before my mom gets in worse health. For my grandmother, it’s ensuring that she’s comfortable. That she’s living somewhere that she’s happy with, that she has care workers that are beside her taking care of her, it’s sometimes testing out products to ensure that it fits her needs. So it’s two different types of planning.

Dr. Laurie Ferguson  12:05

It’s also clear there’s a lot of love and care that goes into that. And it’s not, you know, just thinking but it’s bringing your heart into it. Hearing Cora and Danielle, we hear again, that being a caregiver can be challenging on so many levels. Whether you have a job, a family, or are patient yourself, I want to add the importance of taking care of your mental health as a part of this picture. Mike, what’s your experience with that?

Mike Eidsaune  12:30

Yeah, thanks, Laurie. I think mental health is obviously a huge component. It’s something we talk about as a society today, more and more, which is fantastic. And I think for family caregivers, mental health, the importance of it stems from the challenges that are faced this idea of guilt, you know family caregivers that role can be laden with guilt, frustration, there are tons of emotions that come out of this role. And oftentimes those emotions can lead to other emotions and challenges. And so really, one of the things we recommend, and we’ve talked about this multiple times over this series is this idea of finding community, not just to understand what’s available to you from a resource perspective, but finding folks in your tribe that can really understand and empathize with you very specifically, so that you can share, hey, here’s what’s going on today. And then you find that more often than not, there are 5/6/7 other folks in that circle that are dealing with the exact same emotion, the exact same challenge, the exact same frustration that you are, that can be an overwhelming positive feeling to see that you’re not the only one that’s getting frustrated with your care recipient, or that feels sad, or that feels angry, those emotions are very, very normal. And without seeing someone else sort of either going through them or challenged themselves with those things, you can again, feel very isolated and alone and guilty as a result. So finding that tribe and finding the community of folks who sort of understand what you’re going through can be really important. You spoke to a two in the question, this idea of being willing to not just ask for help, I think asking for help can be a very daunting thing, but being very direct in what your needs are. And really understanding those and then helping other folks understand what it is you need can be a really important thing to do as a family caregiver.

Dr. Laurie Ferguson  14:12

And you’ve mentioned something that is so simple, and yet something that I think many people want to put off. And that is simply being willing to talk about how you’re feeling. Noticing it and being willing to say it out loud and finding someone that you can say it to make such a difference. It’s such a simple thing. And yet many of us we’re just taught to kind of stuff it all down, you know, not really focus on it, try to ignore it or deny it. But that leads to worse outcomes for us. So the willingness to Yeah, say this is how I feel and maybe you don’t have someone write around. You can also write it down. You can put in a journal and then you can throw it out or shred it. You don’t have to keep it but somehow expressing it and particularly expressing it and being witnessed is something that really supports our mental health. I want to talk about another circumstance that caregivers can experience which is working with mobility. Making sure our loved ones can move around comfortably and safely is a top priority as a caregiver. Cora, your mother has mobility issues that you’re attending to. And Danielle, you’re thinking ahead of time of all those extra steps that you need to take to make sure your mother’s comfortable during a vacation. Can you both share some insights on managing and planning around these mobility concerns? Cora, let’s start with you. I know that you’re involved with your mother’s care on several levels. Can you tell us a little bit about that?

Cora  15:31

Yes, sometimes if her hip acts up, she needs help getting off the couch. Or sometimes when we come home, she’ll sit on our stair stoop. And sometimes to get up, she’ll need to grab me on my shoulder, I need to grab her hands and pull her up. I’m trying to get her to go on walks with me. But with her hip right now, I don’t want to push her too hard. But at the same time, I’m like, can’t be sitting all the time because it makes it worse. So I’m trying to push her to walk a little bit more. I tried giving her CBD cream that seems to help. Urged her to go to the doctors more often, because that’s one of the biggest things that kind of led to a lot of her issues was not going to the doctor’s.

Dr. Laurie Ferguson  16:08

Cora, I’m sure that when you plan a vacation with your mother, there are things that you need to look up ahead of time to help with her mobility issues. Am I right?

Cora  16:17

She’s still able to plan things. But I probably have to plan like the rental car and how far the places are and depending on if her hip is good by then. Having to get like a wheelchair or stuff like that. Like definitely like, where the hotel is, how close restaurants are, if they have ramps, how steep stairs are, because that’s one of the big things she doesn’t like any more because she fell on stairs. She’s kind of wary of that now.

Dr. Laurie Ferguson  16:44

So you’ll sort of be scouting out ahead, even as you get there about what will be appropriate and accessible. And what will work. I’m turning to you, Danielle, can you talk to us about how you’re managing and planning around your mother’s mobility concerns?

Danielle  16:59

Yeah, so my parents are going on vacation, especially when your health is declining, you want to make sure that you’re going on those vacations and that you’re making the best of those vacations because you only live once at the end of the day. And so my parents are traveling to Europe this summer, and actually in the next month or so. And we’ve been working together to try to create a plan so that my mother is as comfortable as possible. For my mom that may be making sure that she’s talking with her doctors about certain medications, that may be ensuring that she has a wheelchair after her flight. That may be ensuring that she has a taxi instead of getting public transportation. So we’re really crunching the numbers and analyzing the numbers to make sure that she is as comfortable as she can on the trip. And that she’s not over exerting herself because she has to walk, you know, miles on miles and after a flight or she’s not having to take public transportation because that’s maybe too much for her body physically.

Dr. Laurie Ferguson  18:00

So you’re part of doing the caregiving really is thinking alongside your parents about sort of every step of the way what she might need, and how you can help her sort of think ahead and plan for that both financially, but also to just imagine what it will be that she’ll need like a wheelchair when she gets off a flight. Mike, in your great experience. Have you seen some ways that caregivers can think about and plan for ways to help their loved ones be safe in terms of mobility? Or in terms of taking trips?

Mike Eidsaune  18:31

Yeah, absolutely. Actually, in fact, there’s quite a few. And some are probably more obvious than others, I think thinking ahead sort of doing sort of the walkthrough, as they call it about what are we about to go do? What does that experience going to look like, given some of the unique challenges we’re facing regarding mobility? So that’s things like accessibility, understanding, you know, what my loved ones needs are going to be? And not just from a tactical perspective, but thinking through what does this day look like after four hours, right? When we’re at the end of the day, and we’re all tired? What does that experience going to look like for me and my loved one, you know, sort of playing it through in that way, coming up with a playbook in regards to that, that’s going to do a couple of things. One, it’s going to make us feel a little bit better about the event, maybe we’re going to be a little bit less anxious about that event, because we’ve played it through. But two it’s going to help us be a little bit more present when we’re not constantly thinking about okay, what’s coming up next, we’ve got a plan in mind, being present in those situations is obviously going to be a lot more enjoyable for everybody. The other aspect I don’t think that gets enough attention, especially in regards to mobility is this idea of empathy and a loss of self and loss of self identity. When an individual who’s facing mobility issues and is progressing declining, let’s say they’re going from walker to wheelchair as an example. For that individual that’s a complete loss of identity, you know, being able to move around on a walker and have that independence to going to being wheelchair bound. That’s a huge shift in that person’s identity and who they are. And so for a family caregiver to be aware of that loss of self, that’s going to make you a lot more empathetic. And it’s probably going to make the situation less challenging and exhausting and frustrating for you, as the family caregiver, if you can understand that, hey, there’s a little bit of emotional challenge here that my loved one is dealing with, maybe they’re pushing back a little bit more than I think they should be given that this is a real loss of self in moving one direction to the other. So we think about those things in terms of mobility. And this is obviously an issue that is very present for a lot of family caregivers. So really getting in understanding finding a community of folks who understand that situation and talking it through, I think is the last thing I would recommend. How do other folks deal with these situations? How do other folks deal with going to a baseball game or going to the zoo or going to a movie when there are those sort of mobility challenges? What things do they think about, because the reality is, you’re not the first family caregiver to go through this experience. So never assume that. For years and years and years, people have been dealing with this and finding solutions and finding ways around some of the common challenges that exist. Now it’s about going on and identifying who those folks are, and gathering that experience so that you can be better informed and more well equipped to handle the challenges that are obviously going to come up.

Dr. Laurie Ferguson  21:12

Such an important piece of advice and information. I’m thinking about a caregiver, I know who wanted to take a family member to an event that they had wanted to go to and went to the place ahead of time to sort of scout it out and realize that the only way to get from one floor to another was an escalator was simply not going to work in terms of mobility and had to really find and go back in way, way back into an area to finally find an elevator that would be but that advanced planning and thinking really made all the difference, as you say, to be present in the day and not get stuck or get stymied. And the other thing that I think you’re mentioning in the planning is sometimes one party has a bigger imagination of what can be done in a day than the other, it may be the person who has some of these mobility issues, it may be the caregiver, but to again be very practical about how much energy something’s going to take. And maybe to take a smaller bite rather than a larger bite in your imagination as you plan for it so that it can be much more enjoyable and safer.

Mike Eidsaune  22:09

Yeah, and one thing I’ll just add to that this concept of taking a smaller bite, I think it really just ties back to setting better expectations. And really just being willing to let go and adapt when things aren’t going well. This I will pull from my 11 plus years of experience now as a parent to four boys and a daughter. So five kids total, you can’t set the bar too high, especially when it comes to like public outings, you got to be willing to shift gears and move in another direction. And I think that’s very, very applicable here. And quite frankly, that flexibility and that openness to the moment is going to make everybody’s experience more enjoyable. When you’re not stressed out about delivering on a vision that you’ve set in stone in your head that’s going to make the entire day no matter what happens feel better, feel more positive when you can just roll with it. So having that openness and being flexible and not setting too rigorous an expectation on how the outcomes is supposed to look I think it’d be really, really helpful.

Dr. Laurie Ferguson  23:03

Yes, that is excellent. That’s just advice for life.

Mike Eidsaune  23:08

Yeah, absolutely.

Dr. Laurie Ferguson  23:10

Now Mike, before we conclude this episode, I’d like to ask one final question to our two guests, Danielle and Cora. Danielle and Cora, based on your experiences, what key piece of advice would you offer to other caregivers? Danielle, would you start

Danielle  23:27

Live your life now as much as possible, whether that’s the small things doesn’t necessarily have to be going on a vacation. Live your life as much as possible now, like for example, we love Trader Joe’s its a grocery store company, and they have small little carts that my daughter can push around the store. And that simple thing brings me joy. So find something in your life that brings you joy, even if it’s as simple as you know, watching a comedy or getting outside for a breath of fresh air sometimes that’s what thriving is for some.

Dr. Laurie Ferguson  24:02

That’s wonderful advice. Sounds like you have skills and talents on many levels Danielle. Cora, do you want to share a piece of advice with our listeners? What have you learned from caring for your mother?

Cora  24:14

I learned not to be so hard on yourself and to really try and not lose yourself in the caregiver role. I noticed myself just having that being me and not having any hobbies just kind of just focusing on her. So I’d say trying to definitely learn the balance between the two. And I definitely have to say thanks to her for raising me when I was younger and having the patience with me as a child definitely come full circle with something so I’m definitely grateful for the way she raised me.

Dr. Laurie Ferguson  24:44

Gratitude is a wonderful gift. Being able to feel grateful and feel the love and the appreciation. Cora and Danielle, thank you so much. This has been a delightful conversation. Thank you for showing up for the podcast and for sharing all this about your life, your advice and your journey as a caregiver. Thank you.

Cora  25:04

Thank you for having me and giving me this opportunity to share my story.

Dr. Laurie Ferguson  25:07

So Mike, we’ve heard a lot of different advice, what would you offer for those who are new to caregiving some resources that might be helpful when you’re starting out on this journey?

Mike Eidsaune  25:18

We at Caregiving.com, we really try to recommend people start with a condition, really understanding the condition, whether that’s chronic or situational, frankly, it can be either one. Really trying to better understand what’s available, what research has been done, just sort of educating yourself about the one on ones of the condition can be a great starting place, it’s going to make you feel better as a family caregiver being more informed, being a little bit more educated. I’m not suggesting you go out and get a PhD on Alzheimer’s or whatever chronic disease your loved one is dealing with but just being a little bit more equipped to partake in discussion with a doctor or your individual, a loved one, you really set a much better foundation for everything else that is to come. And I think secondly, and very close second to that is trying to find community and whether that community is virtual, or it’s in person, physical community. I think either way, finding places where you can see yourself in the shared experience of others is going to be a tremendous, tremendous shortcut for you as an individual. in best case scenario, if you can find someone who’s gone through a similar situation that you can rely on or pick up the phone and call when you have maybe a challenge or you just want to talk about what’s going on that can be a huge leg up as a family caregiver and making this all sort of feel a little bit more possible and tangible.

Dr. Laurie Ferguson  26:39

So before we conclude this episode, and in fact, this whole season, Mike, we’ve heard from caregivers who’ve come from many different places and have many different situations. And we’ve learned a lot from them. A repeated theme that came up each episode and that came from both the caregivers and from you, is the importance of building a support system and caregiving. And that system is going to look very different from one person to another because everybody’s unique. As you said, there’s not one caregiver, every caregiver is the new caregiver. So could you expand on the role of the support system in caregiving?

Mike Eidsaune  27:14

Absolutely and the first thing I want to do is define the support system. I think a lot of times people hear support system and they think support group, it’s the first thing I think pops into people’s minds. And I think we need to break that down a little bit. I think support groups are one type of support system. And I think a support system can look very different to any to individual. A support system could be something as simple as a blog that you find that speaks to, you know, loved one’s condition, or the situation or the relationship. And that’s a support system, because it speaks to you as an individual, you can relate to it. I think those are sort of the really the important parts of finding that support system is finding something you can relate to,finding something you can see yourself, in finding something that you can pull from. And those are the factors, just characteristics of the support system I think family caregivers should be looking for. And so when you go about that process, I think, obviously one place to look is your backyard. Do you have support systems like that that are geographically relevant to you? I think that can be a huge thing for family caregivers, you’re reading about family caregiving issues on a national website is one thing. Reading about those same sort of issues as it relates to you in your state or in your city is an entirely new and more relevant sort of experience. So if you can find things that are sort of geographically relevant to you in your backyard, communities that are available support groups that are going on, those are going to feel and I think speak more specifically to you as an individual. So I think those are some of the things I think about some of the things we recommend for family caregivers, this idea of finding communities is one of the ways we pose it on our website. But either way, I think the idea and the prescription for a family caregiver is going to be very unique to the circumstance and the individual. So just being open and really sort of self reflective, and really understanding what is what’s important to me. And what types of support do I typically respond best to or find the most value out of though the answers to those questions, I think are going to be really important in that process.

Dr. Laurie Ferguson  29:13

And that feels to me like Mike the key which is what kind of support systems are usually most helpful to me and to import them into this new situation. As you were talking, I was thinking oftentimes we hear support systems, as you say, a support group where we think it has to be another person but sometimes it’s our pet. Sometimes it’s that special place that we go in nature and we just take a moment and get grounded and we feel energized. You know, sometimes it’s listening to music, sometimes it’s going to whatever is for us a worships kind of situation. All of those can be support to us as a whole person when we are engaged in caregiving. So I really appreciate that the uniqueness but as you say being self reflective to know what it is

Mike Eidsaune  29:58

Right. I love the way you put that in that the constructing of your own individual support system can have a lot of different elements. Informational, physical, emotional. I think that’s a really, really great way to look at it. Having a framework or a blueprint that you as individual just need to fill in. I think that’s really smart. I think it’s really smart way to break it down.

Dr. Laurie Ferguson  30:23

Well, it’s been a pleasure to be on this journey with you as we listen to all these caregivers and how they are creating some thriving and I appreciate your insight and wisdom about that, for sure.

Mike Eidsaune  30:35

Yeah, the experience has been phenomenal. Hearing these stories is obviously a really special thing. And something I’m honored to be a part of. And I think I really do want to extend a really big thank you to all of the guests that you interviewed, sharing those stories is so impactful. And I think oftentimes people don’t realize how important it is for others to be able to hear those stories. And you know, like we talked about finding that support system, Alyssa is or Aisha is, or Marilyn’s story may not be an exact match to mine, but there are components of it that I can pull from, and then I can sort of take away from and say, Yeah, this is really relevant to me, or this is something I could have a takeaway. In my experience, I think that’s something that we need to do more of. And I applaud this group putting such an amazing sort of series together, because I do think it’s gonna be really profound and helpful for a lot of folks. So thank you.

Dr. Laurie Ferguson  31:30

We hope that you found this episode inspiring. We want to thank Danielle and Cora for sharing their experience and their insights. We hope our discussions will help shed a light on the important role of caregivers in patients journeys. And of course, we want to thank you, our listeners, we believe that the journey of caregiving is as unique as each person it touches and we are inspired by our guests who are such marvelous examples of helping their loved ones thrive. We encourage you to keep the conversation going, sharing your experience and questions with us by reaching out at podcasts@ghlf.org and be a part of our thriving community. Be sure to check out the toolkit for caregivers that Mike has shared at the end of each episode. For more enriching content and resources, visit the Show page at ghlf.org/listen. This podcast is made possible with support from Kenvue, sponsor of the Global Healthy Living Foundation. Until next time, may you and your loved ones Thrive With unwavering strength and grace.

Narrator  32:42

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Laurie Ferguson  00:08

What does it mean to age gracefully? Maybe it’s about finding the hobby that gives you euphoria.

Paula Golladay  00:15

It’s such a liberating feeling. I get up on my blades and I just feel like I can fly.

Laurie Ferguson  00:20

Or maybe it’s about moving and grooving to the beat.

Beverly Rogers  00:24

I love, love, love line dancing, even after a hip replacement. I still love to dance.

Laurie Ferguson  00:30

Perhaps Joel has the secret.

Joel Brown  00:32

I started going on canoe trips down some of the western rivers with some old friends that were of the same mind.

Laurie Ferguson  00:38

And for sure, Orvie has an idea.

Orvie Prewitt  00:41

As you try things that work for you, you find out, “Hey, I can do that, after all.” And it’s very individual for people in pain.

Laurie Ferguson  00:51

All of these people have one thing in common, they’re living proof of aging gracefully. Welcome to Thriving While Aching, a podcast that inspires and teaches you how to live a fuller life while safely managing pain. I’m Dr. Laurie Ferguson, Director of Education at the Global Healthy Living Foundation. Have you ever noticed that you feel better when you help someone else? For Orvie, helping others find their true purpose in life and adapt to new situations makes what she gives away come back to her. It’s lovely to meet you. Thanks for coming on to the podcast.

Orvie Prewitt 

Well, thank you for having me. I appreciate it.

Laurie Ferguson

The podcast is called Thriving While Aching, and I’m just curious to know when I say thriving, how does that look in your life? What’s thriving?

Orvie Prewitt

I think thriving is really having a quality of life and being able to do some of the things that I really want to do. And finding ways to do that, even if it means adapting some things. What I really like to do is, I like to play a lot. I work certainly, but I do like to play with my daughter and granddaughter.

Laurie Ferguson

What has helped you to thrive?

Orvie Prewitt  01:53

I’m a trainer and leader for the self management programs that were developed at Stanford University. And that’s really part of my thriving, to find people that are just kind of stuck, and they’re not sure what they need to do next. And from my experiences, from the programs, from working with a co-leader, you can help those people have some Aha Moments, so they can figure out some things they can do at their own level. And they too, hopefully, can start thriving and feeling better and have a quality of life they’d like to have.

Laurie Ferguson  02:49

It’s easy to think a trainer or a teacher has it all figured out. But Orvie is still figuring out ways to adapt in her own life.

Orvie Prewitt  02:57

I have pain every day. I have rheumatoid arthritis. I have pain throughout my body. I am better controlled than I was when I was first diagnosed. But I use a lot of tools and tips that I got in the program. For one thing, I realized that I needed to lose some weight and so I started paying a little more attention to healthier eating and started walking. I have a lot of numbness in my feet, or, not so much numbness, but tingling, which they think is part of the arthritis. It’s there all the time. But I have found if I put on a certain sock and a certain shoe, I can go walk and I don’t notice it’s there as much. So I found, even through the programs, distraction will help me. It’s hard to focus on the pain if I’m doing something else.

Laurie Ferguson  03:53

For people who live with conditions like rheumatoid arthritis, physical activity is an important way to help manage the disease.

Kathleen Cameron  04:01

My name is Kathleen Cameron, and my title is Senior Director for the Center for Healthy Aging at the National Council on Aging.

Laurie Ferguson  04:09

Kathleen explains that for patients like Orive, being physically active is also key to managing their arthritis pain.

Kathleen Cameron  04:16

The CDC recommends physical activity such as walking, bicycling, and swimming because it decreases arthritis pain and improves function, mood, and quality of life. And they recommend that adults with arthritis should move more and sit less throughout the day. And getting at least 150 minutes of moderate intensive physical activity each week is what they recommend.

Laurie Ferguson  04:44

Orvie, if I’m in pain, it’s really hard for me to put on a sock and put on a shoe and get out the door. So how do you motivate yourself to do that when you’re in pain?

Orvie Prewitt  04:53

Well, it started small. And part of that is, when I was in the worst part of the rheumatoid, I had a lot of inflammation, swelling. And so movement wasn’t easy. So I worked with my healthcare team. I did go for some therapeutic intervention, because I was to the point that I was going to probably be in a wheelchair if I didn’t change something. So for me, biologics help to get me on that path. Then, once I was able to move a little more, I always start out thinking that, one thing I think that happens in life is when we sit a lot of times with pain, we don’t hurt as much. But all of us have to get up and go to the bathroom. So I would notice, I’d have to walk a distance, and my stiffness would get better the longer I went. So I started seeing how the pattern went. And what I did is, I would start out small in walking. And as I did that, more and more, I was able to go further and further.

Laurie Ferguson  06:00

Taking those first steps certainly wasn’t easy for Orvie. But getting up and walking was a small, yet important part in her weight loss journey.

Orvie Prewitt  06:09

Between that and healthy eating, I lost almost 60 pounds, which helped. And so I think putting all those things together, and as you try things that work for you, you find out, “Hey, I can do that, after all.” And it’s very individual for people in pain. And I find that with pain, it’s hard for us to focus on two things at once, as human beings. We don’t do that well. And so if you sit and just live with the pain, and let it just woo you, versus trying some type of distraction. It could be a small distraction, whether it’s watching a movie, or if you recite a poem. If you do things like that, you notice that that pain is no longer front and center. And so I think it’s a learning curve for all of us. Then when we’re trying to make changes in our life, is just kind of pay attention to what works for us, capitalize on it, and then continue in that pattern.

Laurie Ferguson  07:13

And those lifestyle changes for Orvie have made a huge improvement in her quality of life.

Orvie Prewitt

I think after you sit so long with pain, it becomes rather boring. And to me it was frustrating, because I thought, “I don’t want to sit and watch life go by. I want to become part of life.” Part of my motivation was I had a little granddaughter. She was two when I was first diagnosed. And that was part of my motivation. My daughter and I are best friends. And so we had always done things together. So that was motivation too. I wanted to continue that fun, that sense of belonging. And then my husband will travel when he can when he’s not working. But I just wanted to be able to participate in life and not sit and watch everybody else do life.

Laurie Ferguson 8:12

It sounds like you’re really engaging in all your relationships. What about setting goals? Where do you start?

Orvie Prewitt

I think the key is, you start where you’re at as an individual. You take small steps, and don’t overwhelm yourself. There’s a Mary Englebright card that I really like. And it says, “Don’t look back.” And you come to a crossroads and one says, “Your life,” the other says, “No longer an option.” I keep that out in front of me. Because I’m going on with my life. I’m not going to think about what I did 10, 15, 20 years ago. So the programs were very beneficial, because they all have action planning.

Laurie Ferguson 8:56

It feels like when you see success, the momentum just builds and builds. But you also rewarded yourself with something you love. A jacuzzi.

Orvie Prewitt

Yes. I love a good Jacuzzi.

Laurie Ferguson

Oh, yeah. Adding something healthy, that also makes you feel good, must have been a positive reinforcement.

Orvie Prewitt

Exactly. And I think that’s really key. Because if we enjoy doing something, if we’re trying to build a health behavior, we’re more apt to stay with it, than if we say, “Oh, I’m gonna go do this.” Well, that’s not positive self talk. Yeah, we can talk to ourselves either in a positive manner or a negative manner. And so I don’t want to be the negative one to say, “I think I’ll take a walk today.” I want to be enthused about it and say, “You know, I want to get out there and walk today because it’ll give me an opportunity that I can get out. Maybe I’ll listen to a podcast while I’m walking.” Various things like that. And it doesn’t have to be long. I don’t want people to think, “Well, I’m not at that level.” I get it. We all have to start somewhere to get to a point that we’re better, you know, and some of our programs we call Getting Back to Better. And I think that’s the goal. We all want to get back to better. And so if we can do certain things that give us pleasure, we’re more apt to continue it, and then have more of a quality of life we want.

Laurie Ferguson 10:25

Orvie, when you received your diagnosis, did you find there were things you couldn’t get back to doing?

Orvie Prewitt

Oh, yeah. I mean, there’s things I can’t do. I can’t ride a bicycle anymore, that’s not gonna happen. There’s just different things that, as far as physical activity, I might have done. I can’t really power walk anymore. But I can walk. I can walk certain distances. I learn when I need to stop. And that takes, you know, a little education on yourself of listening to your body and knowing when too much is too much. I do some things sitting down more than I used to. I used to be able to stand all day long. But sometimes I can’t do that, because of the limitations I have with arthritis. So I think I just have looked at it as life changes. And so sometimes it’s nice to enlist other people to help you if you need things. I can’t climb up on a ladder and change a light bulb anymore, or even a step stool. So I have to find ways that I can get someone else to do it for me. But it’s kind of like, okay, that’s kind of a rite of passage. I’m aging, and I’ve got arthritis, so be it.

Laurie Ferguson

And you’ve been fortunate to find a change of venue to help.

Orvie Prewitt 11:46

My daughter happens to live in California now. So I like to go out there and walk on the beach. We recently did sandcastle building, which in the Midwest, we don’t have a place to do that. So I’ve found ways to do other things that I might have done more physical things before. But I’ve adapted. So I might take a cooking class, or I might just adapt so that I can get out. But I might not walk two or three miles, I might just go a half a mile and sit a while or not even that much. Just find ways to do what I want to do, but modify it. If I need a bench, if I need to stop and rest. Say okay, that’s fine. I’m not 19 anymore.

Laurie Ferguson 12:37

Adaptation is the key, especially for things we love doing in our 30s that we struggle with as we age. Kathleen points out, it’s important for patients managing pain to discover new ways to find enjoyment.

Kathleen Cameron  12:52

I really love what Orvie has discovered, and that is paying attention to what works, capitalizing on it, and then continuing in that pattern. But also, understanding that it may change. And one good idea that many doctors, nurse practitioners, and others recommend is to create a diary of daily activities and include what works for pain management. And in this diary, you should write down what medications have been taken, both prescription and over the counter medications, how much have been taken, how they control your pain, and then also list the other types of things that you may have done to manage your pain during the day. Things like exercise that we’ve talked about. Maybe mindfulness meditation and some of the exercise programs that we’ve mentioned. Also include what may have aggravated the pain during the day. This is really important to share with your healthcare providers. And that’s going to help ensure that the treatment plan that is being developed, or tweaked over time, is right for you. The more information you can share with your healthcare providers, the better.

Laurie Ferguson  14:05

Orvie, your attitude is so inspiring. It feels like you stay very connected to your motivation, whether it’s pushing through the pain or accepting that it’s just part of life now.

Orvie Prewitt

I think it’s probably a little of all of that. But especially if I’m distracted, I don’t realize where it hurts. If I’m alone and walking somewhere and then I feel a hurt, I’m fine. I forgot that was there because I had been distracted in a conversation or doing something else. I think another thing is define maybe a circle of people that you can really connect with. And I’ve certainly done that. We kind of have a little coffee group. There’s four of us women that will try to get together once in a while and we all have plenty of aches and pains and chronic conditions between us. But when we meet, we don’t talk about that. We distract ourselves. And we’ve managed to do it during COVID. We were getting together about once a week, but we’d do it outside. And we measured our distance, you know, and so we’ve been very safe. But I think that connectivity helps with isolation for people, because we certainly have a lot of people socially isolated. And then what we did too, with the programs, is we were able to convert them to virtual programming. And we now offer toolkits for those programs for people who are not internet connected or computer savvy. All you need is a telephone, and we meet once a week as a leader meets with them. Those are rewarding things, I think that help people stay socially connected. That’s another aspect of quality of life because you’ve got someone else that you can talk to, and be there for you.

Laurie Ferguson

Orvie, I’m so grateful to have spent this time with you and to be inspired by your liveliness. You are indeed helping other people light candles. So thank you so much for your time and for your wisdom.

Orvie Prewitt

Well, thank you so much, I appreciate it.

Laurie Ferguson 16:13

When you’re trying to change and manage your pain, the important thing to remember is that you need to go one step at a time. That’s how Orvie managed to overcome her pain from arthritis. Because whether setting foot on the moon or climbing a mountain, it requires small steps. To learn more about the programs that Orvie mentioned, you can check out the resources we’ve included on the Thriving While Aching podcast page. We hope you found this episode and our series inspiring. We’d love to know how you are thriving while aching. Send us an email, a short video, or audio clip. Tell us your secret to aging gracefully, so we can share it with others in our community. Send it to thriving@ghlf.org Thanks for joining us for Thriving While Aching, a podcast that inspires and teaches you how to live a fuller life while safely managing pain. If you liked this episode, give us a five star rating and write a positive review on Apple Podcasts. It’ll help more people like you find us. I’m Dr. Laurie Ferguson, take care.

Narrator  17:29

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network. This podcast is made possible with support from Johnson and Johnson Consumer Health, sponsor of the Global Healthy Living Foundation.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Beverly Rogers  00:09

I start my day circulating my feet to make sure that the ankles working. I have a quick conversation with the Lord about making sure that I can make it out of the bed and stand up.

Laurie Ferguson  00:24

Welcome to Thriving While Aching, a podcast that inspires and teaches you how to live a fuller life while safely managing pain. I’m Dr. Laurie Ferguson, Director of Education at the Global Healthy Living Foundation. For Beverly, she thrives while empowering others. As an advocate, she’s been speaking up for healthcare in the Black community for decades. After getting diagnosed with breast cancer herself, she realized she was in a position to help others. It hasn’t always been an easy journey. But for Beverley, being a voice for a larger cause she believes in is her calling. Well, I’ve been looking forward to this conversation. One of the things that we want to hear from you is about how you thrive while aging. That’s kind of the focus of these podcasts. And I think that word thrive is so interesting. So what does that suggest to you, thriving while aging?

Beverly Rogers  01:21

Aging means that I feel good, I can think well, I have a good appetite, and whatever chronic pain I have is minimal.

Laurie Ferguson  01:36

Beverly, you look ageless. Would you mind sharing how old you are?

Beverly Rogers  01:40

I am 79. And I will be 80 in January. And the reason I am proud of it is because people say I don’t look a day over 65. If I were 40, I would probably be insulted. But I live in an independent senior community and there are people around here who are in their 80s and 90s and they’re in better shape than I am. And they always tell their age. I saw a lady today who is 93. She had on her jewelry, she had everything matching, and she was on her way out to lunch. And I’m like, I’m looking to be like her when I get to be 93.

Laurie Ferguson  02:21

Beverly’s personal story is long and multifaceted. She’s an activist, she has been involved in the wellness space for years, and perhaps most importantly, she has been a caregiver for several family members.

Beverly Rogers  02:32

I truly believe I was groomed for them from the beginning. I was an only child for 11 years, as though my mom and dad had forgotten what to do. And all of a sudden I had a baby sister. But as an only child and having the only child syndrome, I was very independent. And even in my household, you did not talk when you were not spoken to. Once I got out into the work world, I became very independent. And you know, once you get married, you’d better be independent and speak up. Otherwise, you may end up to be an abused woman. And I was not about to be one of those.

Laurie Ferguson  03:16

You can hear in Beverly’s voice her passion for social causes. And it was her experience of living through the civil rights movement when her activism turned to healthcare in a very personal way.

Beverly Rogers  03:27

During those years, I truly believe coming up through civil rights, coming up through racism, coming up through being the first Black female, or the only Black female, not only in my classes through grade school in high school, but in every job that I went through, you know, I was setting some kind of record that that taught me. I mean, those were learning periods for me. So that when I got breast cancer, and I had never seen a Black face talk about breast cancer, and I said something’s got to be done. And that’s why I say I was groomed for all of that.

Laurie Ferguson  04:08

It’s one thing to be groomed for it. It’s another to be working at the right place at the right time to speak up.

Beverly Rogers  04:14

I worked at a hospital as an administrative assistant. I went into the American Hospital Association as an administrator. And so all of these things, all of these pieces, were sitting right there so that when my mother got sick, when my child was diagnosed with diabetes, when my husband got Alzheimer’s, there were pieces that I could grab from my history, from my experience. And all of that, I think those experiences have brought me to where I am so that now I truly believe that I am thriving for that. I know where to go to ask. I know that I can ask questions. I know that I can keep asking and doctors, most of the time, don’t even suspect that somebody like me is coming into the office. I don’t think of myself as being an activist, as much as I think of myself as an advocate.

Laurie Ferguson  05:09

Great distinction. I’m hearing this beautiful thread through your life; finding your voice, knowing your truth, and putting it out there.

Beverly Rogers  05:18

I remember very clearly wondering, what is my purpose? Why am I going through whatever it was at the time? And I remember very clearly, that still small voice that says your purpose is to empower women to be the best God has called them to be. And I’ve always held on to that. And it may not be in a particular area, it may not be in a particular season, but from breast cancer, to diabetes, to Alzheimer’s, to right now Medicare and senior citizen. And all of those is talking to women about being the best. Not the someone else says you should be. Not what the doctor says you should be, but the best God has called you to be. So you need to go within. How do we close that gap between where you are and where you know you want to go?

Laurie Ferguson  06:18

By this point, I can’t help but wonder, how does someone like Beverly become the woman she is? A woman with such clear purpose.

Beverly Rogers  06:27

My mother had a saying when she was ready to have her downtime, she would go in the bathroom. And she would say, “Do you need to go to the bathroom,” because there was only one bathroom in the house during those days. And she would go for one hour and take her bath with her joy liquid, her perfume, her epsom salt, and her Daily Word. And you better not say you had to go to the bathroom, or anything, because for one hour, she would say, “Let me miss you.” You have independent play, you read a book, you take a nap, but you could not call the name mother. So being independent, and knowing that I had to take care of myself, my husband would say, “You know, I don’t know why you asked me any questions about anything, because you’re one of those people that if you don’t like the game, you’re gonna take your ball and go home anyway.” You are absolutely right. If I don’t like the game, if it does not suit me, if it does not do well for me, and I don’t see a purpose that has some sort of quality, even now. If it’s a doctor, he is fired if he is not for me. If he is not looking after what I think he needs to be looking after. So yeah, it started way back.

Laurie Ferguson  07:47

So Beverly, let’s talk about where you find purpose in fun and joy in your life. What do you love to do?

Beverly Rogers  07:54

Oh, I love, love, love line dancing. Even after a hip replacement and a do over I still love to dance. And I go to cheer exercise three days a week. So we do yoga one day, and then we’re doing all kinds of other exercises the other days. And I have a cousin who teaches line dancing, so I get to go to her classes when I can. I love, love, love music. I played piano starting at five, went to organ and cello, and I don’t play anymore, but I can go from Bach to Donnie McClurkin and I love Piano Guys and Keiko Matsui in between. So fun for me is actually being with friends and family, and dancing and just laughing.

Laurie Ferguson  08:47

Beverly mentions many important outlets that we all need.

Kathleen Cameron  08:50

My name is Kathleen Cameron, and my title is Senior Director for the Center for Healthy Aging at the National Council on Aging.

Laurie Ferguson  08:58

Kathleen gives Beverly high marks for all of her active interests and describes how exercise is a key to thriving.

Kathleen Cameron  09:07

Physical activity has a positive impact on our quality of life and our emotions and our mental health, including our independence. It’s going to help older adults stay as independent as possible for as long as possible. At the same time, physical activity actually reduces risk of developing chronic conditions like hypertension, heart disease, diabetes, osteoporosis, and obesity. And we know that moderate to vigorous intensive physical therapy is really effective for weight management, which in turn reduces joint pressure and joint pain. So persons with arthritis really need to manage their weight as possible so that their joints don’t have the excessive pressure that extra weight could provide. Exercise also helps us with our posture, it strengthens our bones and muscles, and repetitive motions that can contribute to musculoskeletal pain.

Laurie Ferguson  10:08

Beverly, as we age, just getting out of bed in the morning presents nagging issues we never imagined. I know you have to move your ankles around a bit, but you’ve battled cancer and had a hip replacement. What’s your ritual to manage your aches and pains?

Beverly Rogers  10:24

I have to take a deep breath on that one, cuz some days I don’t think I manage them well. I was on medication, and I was suffering some of the side effects. So the doctor gave me a medication and we didn’t realize it was a side effect. But she gave me medication to help with what the side effects were. And I thought, “Beverly, you’re smarter than this. This is stupid. So let’s look at it another way.” And so what I have done just recently, is changed my diet. And I don’t know if you know anything about the African American family, but when we have a family gathering, it’s about food. I mean, fried chicken, mac and cheese, mashed potatoes and gravy, string beans, turnip, and mustard greens. And don’t forget the apple cobbler and the peach cobbler and the pound cake and the sweet potato pie. And I thought “Beverly, you need to get a grip, you just need to get a grip.” So I’ve changed my diet.

Laurie Ferguson  11:29

And on top of changing her diet, Beverly now listens to her body.

Beverly Rogers  11:33

I’m finding in this day and age, because most people my age assume that if the doctor says it, then you do it. If the doctor prescribes it, then you take it. And because I came up around healthcare professionals, I knew that their decisions were not always made based on the patient. They were based on what they thought was best, according to the drugs or whatever the science came up. And even though we’re having this whole difficult time about science and personal preference, science wins out as long as it is not detrimental to your health. It’s just watching and being aware of what your body is responding to and how it responds.

Laurie Ferguson  12:21

So really paying attention to yourself and knowing what works for you, and what doesn’t work for you, sounds like a good rule we can all learn.

Beverly Rogers  12:30

Yes.

Laurie Ferguson  12:32

So Beverly, how do you take care of yourself on a daily basis?

Beverly Rogers  12:36

Well, now I take a nap almost every day. And I don’t set out to take a nap. But I will turn on music or I’ll turn on a game show or just turn on something. And some days, I don’t care to hear anything but the whirl of the refrigerator or the air conditioner. And I will sit down in a chair, and I will just think about anything pleasant. And there’s some songs that just fill me with joy. And I will just sit there and for maybe an hour, an hour and a half, I will just relax.

Laurie Ferguson  13:10

Oh, what a great prescription.

Beverly Rogers  13:12

And I have a little Shih Tzu named Chaka, she’s a little black shitzu. And I call her my diva. And if I get in the chair, and just to relax, she’s gonna come up and lay on my lap and she’s gonna relax too. So we take time to just cool out during the day.

Laurie Ferguson  13:32

In the hustle and bustle of our lives, it’s easy to ignore the one thing we can do for free at any time to help us thrive.

Kathleen Cameron  13:41

Mindfulness is really important too, as a strategy for managing pain. Mindfulness is actually the practice of focusing one’s attention on the present moment. And being open to the experiences of that moment, really focusing on the here and now. Focusing on your breathing, maybe a specific sound like calm music, or an image, maybe a favorite place that brings you peace; a beach, a mountain retreat. And it helps really redirect your attention away from the pain.

Beverly Rogers  14:16

You have a choice, and you have to have your own formula for getting through. And of course, my formula is not drugs. My formula is not alcohol. And my formula is not food. My first choice is to go back to the person I know as God and say, “What have I done or what do I need to do to move forward? How long do I need to be here?”

Laurie Ferguson  14:42

Beverly, thank you so much. You are an inspiration, a light.

Beverly Rogers  14:47

Well, thank you, Laurie. From your lips to God’s ears.

Laurie Ferguson  14:52

We hope you found this episode and our series inspiring. We’d love to know how you are thriving while aching. Send us an email, a short video, or audio clip. Tell us your secret to aging gracefully, so we can share it with others in our community. Send it to thriving@ghlf.org. Thanks for joining us for Thriving While Aching, a podcast that inspires and teaches you how to live a fuller life while safely managing pain. If you liked this episode, give us a five star rating and write a positive review on Apple Podcasts. It’ll help more people like you find us. I’m Dr. Laurie Ferguson, take care.

Narrator  15:39

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network. This podcast is made possible with support from Johnson and Johnson Consumer Health, sponsor of the Global Healthy Living Foundation.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Joel Brown  00:08

I think the key is to do what you like, as long as you can. Do what you enjoy, and pay attention to who else is doing it. Do activities that other people are doing too, and befriend them. Go over and talk to them. Find out if you’ve got more in common than just the fact that you’re sitting on the edge of the lake throwing food to the ducks.

Laurie Ferguson  00:29

Welcome to Thriving While Aching, a podcast that inspires and teaches you how to live a fuller life while safely managing pain. I’m Dr. Laurie Ferguson, Director of Education at the Global Healthy Living Foundation. The place that makes me feel alive is being with family and friends. For Joel, it’s the great outdoors. And as he’s gotten older, he’s found a way to expand those great horizons. Joel, it’s so great to meet you.

Joel Brown  01:00

It’s good to meet you.

Laurie Ferguson  01:01

One of the things that always interests me are the different definitions that people have of thriving. So, what does it mean for you in your life to thrive?

Joel Brown  01:11

Well, it’s to be able to do the things that I want to reasonably comfortably. I don’t ask for total comfort, but just sufficient comfort.

Laurie Ferguson  01:21

And is that something you live with a lot, the hurting?

Joel Brown  01:24

Well, I do. I was a very active man for many years. I was a rock climber, backcountry skier, mountaineer, that kind of thing. And I did a pretty good job of wearing out my joints. So osteoarthritis has sort of attack them, one after another. And I find I can’t do the things I used to do. But I like to still do as much as I can.

Laurie Ferguson  01:46

Sounds like you were incredibly, and not just active but, dedicated to being out of doors. I mean, a mountaineer, what does that even mean?

Joel Brown  01:54

Well, it means that I live in an absolutely beautiful place with lots of big mountains. And they call to me. So I went up and did almost all the activities that were available in those mountains. So I did a lot of rock climbing. There are big mountains right behind my house, spent the last 50 years exploring those mountains, climbing their cliffs, and skiing off the edges of them. And so it’s a year round activity.

Laurie Ferguson  02:21

But it’s not something you can do now?

Joel Brown  02:24

No, my knees, my ankles, my shoulders are sore enough from doing it for a long time that I’m really limited. So I, I could do easy hikes, cross country skiing, and the like but my super active years are passed. But then I’m 75 years old. So I had a good run.

Laurie Ferguson  02:45

What’s that like to feel that limitation or change your definition of thriving?

Joel Brown  02:50

It’s frustrating to a degree. On the other hand, I have very good memories. And most of the people that I did these things with are having the same issues. So we’re all finding new ways to thrive as best we can together.

Laurie Ferguson  03:11

How do you find ways to shift? A person that’s been so active and now those doors are closed. You still live in these beautiful mountains, you’ve had to find new ways to do things. How do you do that?

Joel Brown  03:22

Well, it’s a gradual process.

Laurie Ferguson  03:25

And it’s an identity issue in some ways, too, isn’t it?

Joel Brown  03:28

Well, that’s right, exactly. I got my identity through activity rather than work. I was a computer guy for forty years. But if people would ask me what I do, I would mainly talk about skiing and climbing, rather than playing with computers.

Laurie Ferguson  03:46

And so how do you talk about your identity now?

Joel Brown  03:48

You know, it’s hard to say. I do the things that I I like to do and still have a enjoyable life. And so I’ve just dialed it back, I guess is the way to put it.

Laurie Ferguson  03:59

And it sounds like you’ve kept moving.

Joel Brown  04:01

That’s right.

Laurie Ferguson  04:02

For some people, that kind of pain, or feeling of limitation, they just say, “Well, that’s it. I can’t do anything. I really have always wanted to just sit on the couch.” But it doesn’t sound like you’re resigned.

Joel Brown  04:14

No, you’ve got to keep moving as long as you can. So you basically do what you can while you can. These days I spend an hour, a couple of days a week, with a personal trainer, trying to maintain my mobility, my strength as best I can. For right now two hours a week seems to keep my joints from bothering me too much. Ibuprofen is a good friend.

Laurie Ferguson  04:45

A pain reliever is a good friend to keep us moving. But how do you know which one is the right one for you?

Kathleen Cameron  04:53

My name is Kathleen Cameron and my title is Senior Director for the Center for Healthy Aging at the National Council on Ageing.

Laurie Ferguson  05:01

Kathleen is also a pharmacist. She knows it could be confusing, standing at a drugstore aisle, staring at a shelf, and not knowing which over the counter pain reliever is right for you. One remedy for treating pain is NSAIDs.

Kathleen Cameron  05:15

These are typically the second line of medications that are used to treat pain, especially pain like arthritis, joint pain, musculoskeletal pain. These include medications like ibuprofen, and naproxen, and there are also many prescription non-steroidal anti-inflammatory medications. Prescription NSAIDs really help with inflammation. Over the counter NSAIDs have warnings that they may cause severe stomach bleeding, especially if you take more or for longer than directed. You should always ask your doctor if you have any questions.

Laurie Ferguson  05:55

Another remedy for treating pain is acetaminophen.

Kathleen Cameron  05:58

Acetaminophen is generally well tolerated, especially if the patient has certain medical conditions. Acetaminophen is generally safe when used as directed. Patients should always read and follow the product label as risk of severe liver damage may occur if you take more than 4000 milligrams of acetaminophen in 24 hours.

Laurie Ferguson  06:21

And those milligrams can add up if you’re taking other cold, allergy, or sleep aids, which also contain acetaminophen.

Kathleen Cameron  06:29

Another important point I want to make related to acetaminophen is to make sure you review the liver warning which states that severe liver damage may occur if you take other drugs containing acetaminophen or if you consume three or more alcoholic drinks every day while using this product.

Laurie Ferguson  06:50

I asked Kathleen how aspirin is currently used with older adults.

Kathleen Cameron  06:54

Most cardiologists do prescribe a low dose aspirin to prevent a second heart attack. So we want to use aspirin for that purpose because it helps to prevent blood clots in the heart and in the brain and helps to prevent negative consequences like a stroke. Aspirin now is not as commonly used for pain as other NSAIDs or acetaminophen.

Laurie Ferguson  07:24

Before you take any medications, be sure to talk to your doctor. Kathleen reminds us to keep an up to date list of your prescriptions and over the counter medications, share the list with your doctors and pharmacists, follow their recommendations, and know the potential side effects of everything you’re taking. Now that we sorted through all the over the counter options for your aches and pain, let’s get back to Joel, who found other ways of thriving while aching.

Joel Brown  07:52

I’m also married to somebody who isn’t quite as achy as I am. So she’s always encouraging me to get out and go for a bike ride or go for a walk. I’m very lucky, I have a good support system. I’m also very lucky that I don’t have any of the inflammatory forms of arthritis. I just have osteoarthritis, which is painful enough, but it’s not nearly as debilitating as some of the other ones.

Laurie Ferguson  08:19

But even to frame it as lucky, that mental attitude, it takes a little bit of work, but it pays off some big benefits.

Joel Brown  08:22

Well, it does. I’ve earned my aches and pains.

Laurie Ferguson  08:28

Well, it sounds like you not only have earned them, they’re kind of badges of honor.

Joel Brown  08:34

I don’t know about that. But I certainly have heard them. I did this to myself.

Laurie Ferguson  08:39

For many of us, as we get older, that dreaded word inertia creeps in, you know that it’s hard to kind of get yourself to do things. But what I hear is that’s not really your issue.

Joel Brown  08:51

No, inertia is not part of my DNA.

Laurie Ferguson  08:53

So what kind of wisdom would you have to offer the folks who are listening to us and wondering about their own ways to thrive?

Joel Brown  09:02

I think the key is to do what you like, as long as you can. Do what you enjoy, and pay attention to who else is doing it. That’s the real key. Do activities that other people are doing to and befriend them, go over and talk to them. Find out if you’ve got more in common than just the fact that you’re sitting on the edge of a lake throwing food to the ducks.

Laurie Ferguson  09:25

That’s a great wisdom because do what you enjoy is something I hear over and over again. So after the rock climbing, mountaineering chapter, how did you find what you enjoyed?

Joel Brown  09:37

My wife and I bike ride considerably more than we used to. I started going on canoe trips down some of the western rivers with some old friends that were of the same mind. In our travels, what we also started doing is going on group trips. There’s a number of organizations that will do all of the less enjoyable organizing part. There’s a group called VBT, Vermont Bicycle Tours. And we’ve done several week long tours in Europe. We’ve acquired several good friends as a result of those activities.

Laurie Ferguson  10:11

It’s so inspiring, Joel, because what you’re sort of helping me think about is, how do we expand our horizons and not constrict? And it sounds like when something that was so vital to who you are wasn’t possible anymore. That idea, “So I’m going to look around and there were some things I used to do a little of, and I’m going to expand that,” and you’ve expanded even bike trips in Europe. Where did you go?

Joel Brown  10:35

Well, the first trip we did was a week long trip in Portugal on the border between Portugal and Spain. A few years later, a friend had a 70th birthday, and suggested that we all join her on a week long bike ride in Provence. So we spent a week drinking a little wine and eating some halfway decent food. And then a few years after that, another trip caught our eye in the Dolomites. So we spent a week bike riding in the Dolomites in northern Italy, which was absolutely lovely. And you’d think that that was would be a killer, because those mountains are so unbelievably steep. But the whole area right at the base of them are apple orchards. And they used to have trains that went through to pick up the apples. So they’ve turned all of those old train tracks into rail trails. So you can bicycle along these trails that are of course not steep, because trains can’t go up steep things.

Laurie Ferguson  11:29

How beautiful, how inventive, that’s wonderful. At this stage, what are you looking forward to?

Joel Brown  11:38

Well, for the last three years, we’ve already got a fully paid for trip to Galapagos Islands. And so we’re gonna go there next April.

Laurie Ferguson  11:48

Oh, that’ll be wonderful. And that’ll be different, too, because I don’t believe you’ll be biking in the Galapagos.

Joel Brown  11:54

Oh, no, not at all. We’ll be on a small ship, holds about 30 passengers. And so we’re going with our son and daughter.

Laurie Ferguson  12:02

That sounds like a fabulous place. So again, I hear you pushing new boundaries, opening yourself to new experiences. And, you know, there may be some regrets, but I don’t hear you regretful that part of your more active life was gone, you’re moving forward.

Joel Brown  12:19

That’s exactly right. I think a friend of mine always says, “Nobody ever lay on their deathbed and said, ‘Gee, I wish I’d spent more time with the office. Think of all I could have accomplished just a few more meetings.’ That never happens.”

Laurie Ferguson  12:32

And so you don’t have to look back and say, “Gee, I wish I had been able to do that. And I wasn’t, so I just stopped in my tracks.”

Joel Brown  12:40

You know, that there’s a few goals that I had when I was younger, you know, big mountains to climb or whatever that I never did. Those are minor regrets, and it would have been good to have done that. But it didn’t happen. And that’s okay.

Laurie Ferguson  12:53

It sounds like it’s very okay, in terms of the life you’ve created now. So thank you for being here and sharing your story and inspiring us in our ways to figure out how we can expand some of our horizons and may you continue to thrive.

Joel Brown  13:09

It certainly has been a pleasure. I’ve enjoyed talking with you. Thank you for asking me.

Laurie Ferguson  13:16

We hope you found this episode and our series inspiring. We’d love to know how you are thriving while aching. Send us an email, a short video, or audio clip. Tell us your secret to aging gracefully, so we can share it with others in our community. Send it to thriving@ghlf.org Thanks for joining us for Thriving While Aching, a podcast that inspires and teaches you how to live a fuller life while safely managing pain. If you liked this episode, give us a five star rating and write a positive review on Apple Podcasts. It’ll help more people like you find us. I’m Dr. Laurie Ferguson. Take care.

Narrator  14:02

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network. This podcast is made possible with support from Johnson and Johnson Consumer Health, sponsor of the Global Healthy Living Foundation.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Paula Golladay  00:09

I have no problem at all being an amputee. I can walk on hot coals, you can’t. I can walk on glass, you can’t. My socks never ever, ever smell. I can wear one pair of socks for an entire year.

Laurie Ferguson  00:23

Welcome to Thriving While Aching, a podcast that inspires and teaches you how to live a fuller life while safely managing pain. I’m Dr. Laurie Ferguson, Director of Education at the Global Healthy Living Foundation. Paula finds such humor and grace being not just an amputee, but a double below the knee amputee. Due to the progression of Gaucher’s disease, doctors amputated her right leg in 2001 and left leg in 2009. But amazingly, Paula found joy and a sense of community in running. She started out as a race walker and then worked her way up to running road races where she lived in Virginia. Speed doesn’t matter. It’s the journey. Let’s hear how Paula turned to running, how she manages her pain, and how she’s thriving while aching. Paula, I’m so delighted to meet you and be able to have this conversation. You got into sports later in life. Tell us how you became an athlete.

Paula Golladay  01:28

Certainly not as a child or anything like that. I mean, other than normal. When I was a kid we went out and played. We didn’t have electronics. So I think I really started getting into athletics, probably in my 40s. I was an avid cyclist. I mean, I loved it. I was a road cyclist and my average ride was 25, or better, miles a day.

Laurie Ferguson  01:51

Oh my gosh, wow.

Paula Golladay  01:54

And then I became an amputee. When I was a single amputee it was fine. But now as a double, it’s not a safe thing to do. I don’t have the ability to dismount and grip. So I did nothing. And then I got into running.

Laurie Ferguson  02:08

Paula started to dabble in running about 2017. By the next year, at 69 years young, she was enamored.

Paula Golladay  02:17

I was challenged. I had become overweight. I was taking an exercise class, and another woman in the class suggested that I do what is known as The Turkey Trots. So I said, “Sure.” I had never ever done anything like that before. A 10k is 6.2 miles, but it does have some hills. And I was darned, I was going to finish that race. And then in August of that year, I found an evening race in my area. And that’s when the bug really hit me. So at first I was just doing them for, hey, this is fun, I enjoy it. And then the competitive nature in me came out.

Laurie Ferguson  02:59

When Paula first got into running, she wasn’t equipped with what’s known as runners blades. Those are prostheses that share some similarities with biological legs. So she started out by race walking.

Paula Golladay  03:12

I think everybody can find something that they like to do, exercise wise. I don’t think you should be trapped into doing something because your friends are doing it or it’s a cool thing to do. It was just the thing for me.

Laurie Ferguson  03:25

While the pandemic has made so many of us alter our exercise routines, Paula didn’t quit. Even if she couldn’t physically attend races in person.

Paula Golladay  03:34

Last year, even in the pandemic, I completed 68 virtual races, which is about as much fun as running with cardboard people. But my race miles were about 225 miles, not counting my training miles. And then late 2019, I got my first real running blades.

Laurie Ferguson  03:56

And the runner’s blades have made a huge difference when she runs.

Paula Golladay  03:59

I don’t know how to describe euphoria. It’s such a liberating feeling for me. I get up on my blades and I just feel like I can fly. It’s really hard for somebody who’s not an amputee to fully understand the dynamics of just running as an amputee anyway. It’s almost, somewhat, like you feel like you’re floating.

Laurie Ferguson  04:23

Of course, even for someone who’s a double amputee, staying active is key to a healthy life.

Kathleen Cameron  04:30

My name is Kathleen Cameron, and my title is Senior Director for the Center for Healthy Aging at the National Council on Aging.

Laurie Ferguson  04:37

Kathleen knows that if you suffer from pain, it’s important to seek help from professionals to manage that pain while doing physical activities.

Kathleen Cameron  04:46

Physical therapists are really key in managing pain for many older adults and their mantra is that, “The more you move, the better your health.” And I couldn’t agree more. You know, physical therapists are movement experts and they treat people of all ages and all abilities. They are licensed health care providers who maximize their patients abilities. And they manage pain, they help people manage chronic conditions, and help them with everyday function and fitness. And they can help people identify, you know, what’s appropriate for physical activity so that we’re not pushing our bodies too much. That we’re doing the right types and intensity of physical activity. Also, they can help avoid injuries, further injuries, new injuries, etc.

Laurie Ferguson  05:33

So Paula, you express such joy, but you have to experience pain, right?

Paula Golladay  05:38

There is pain. It can get uncomfortable. I don’t think you should exercise in any way shape or form if your body is really telling you, “Hey, you’re in pain.” Okay, this is real pain, your body is signaling you and saying something is not right. And you need to step back and say, “What’s going on?” Then there’s working through discomfort. And my discomfort level is going to be completely different than somebody else’s. And you have to get to know your body.

Laurie Ferguson  06:06

Kathleen Cameron agrees. And when you get to know your body, you then need to listen to it.

Kathleen Cameron  06:13

If we are in pain, something is not right. And we need to stop or modify what we are doing, because that’s contributing to the pain. And that’s a big red flag. Some exercises or certain types of physical activities that we were once able to do when we were younger, may present a problem as we get older. Of course, if the pain is really severe, it’s important to seek medical care. And in some cases, you may be sore for a few days after a heavy workout, especially if it’s like a new type of activity, or if you’ve really upped your intensity. So it’s important for us to kind of rest and recover. And you might need to apply heat and heat can help in the healing process.

Laurie Ferguson  06:58

Now we all have those moments when we aren’t motivated to exercise. But for Paula, her motivation is the sense of community she gets from running.

Paula Golladay  07:09

I’m in a running training group, twice a week now. And I had a really lovely chat with one of the other women in the group. And I had to come to the realization that, why am I not motivated? You know, what is my biggest fear of something? And I realized it was because I had lost my competitive edge. Because I wasn’t doing the time that I was normally used to doing. I am not fast. But now I’m like super slow. Once I decided, okay, that was just not a good process, I realized I can get back out. And I also realized that just being amongst other people is a push to start. So the biggest thing, no matter what you do exercise wise, in your house, outside doesn’t matter. It’s a virtual state, so to speak, but it’s getting out the door. Once you pick up the video or whatever it may be that you’re doing, you’re at least there. You’re motivated. And hopefully you’re not going to say, “Oh, I can’t do this, I’m going to quit.”

Laurie Ferguson  08:10

The key, Paula says, is to get to know yourself. And to have an inner script and a routine that encourages you to exercise.

Paula Golladay  08:18

I run with music. I sort of know approximately how long a song will be. And so I kind of judge myself, alright, you’ve made it through four songs, five songs, you know, you’re on your way already. There’s all sorts of psychological games you can play on yourself. You feed off of people. They may pass you, you may pass them. If I see somebody struggling in a race, whether it’s an another adult or child, I will cheer them on while I’m going by them. Especially if it’s a young kid or something. I’ll tell them, “Come on, you got to got to beat me in, you got to cheer me in.” A lot of the races people have come to know me as well. I do tend to stand out in a small crowd.

Laurie Ferguson  09:01

By now, you know Paula is motivated and competitive. But more than anything, she makes community better and stronger. Paula, what advice would you give folks who are struggling to find new passion in life?

Paula Golladay  09:16

You know, we all have a sort of our weird claims to fame. I was actually at Woodstock. I have no intention, if they put it on today, to drive up and do Woodstock. So you have to look at things sometimes and say, “Okay, what is reality?” Find another love, find another passion. Why say, “I can’t do that. And then there’s nothing else for me.” We all go through those times. Find something that gives you passion.

Laurie Ferguson  09:46

Paula, that is amazing. You have such a zest for life. You’re a lifeforce. How do you keep that nourished in yourself?

Paula Golladay  09:54

I believe in having quiet time for yourself. I definitely believe being around people. I mean, I’m the quintessential extrovert who married the absolute introvert. I have no problem getting in my car and saying, “Let’s go for a ride.” I think that’s what keeps me pushing and moving.

Laurie Ferguson  10:13

One thing Paul wants to teach others is that you’re never too old to start something new.

Paula Golladay  10:19

I personally think getting old is fabulous. Great thing about getting old, if you’re running, is you’ve limit the field, because most races will always give to the top male and female. I will never be there. But then a lot of races will do age categories. When you get into my age group, there are times that I’ve actually placed first, second or third. It’s great. Sometimes I’m the only person in my age group. I’m like, I came first. So what if I’m the only one, I showed up.

Laurie Ferguson  10:46

Paula embraces this positive outlook on life.

Paula Golladay  10:50

I love being an amputee. I’m a very proud amputee, not prideful, but very proud. I’ll celebrate 19 years as a single amputate. My anniversary date is September 11, 2002. I had a lot of surgery leading up to it. So it wasn’t some sort of rash decision. Course you can’t look back. I wear skirts, shorts, dresses. I have no problem at all being an amputee. I think it’s super great, actually. There are benefits to being an amputee.

Laurie Ferguson  11:20

So what’s the benefit?

Paula Golladay  11:22

I can walk on hot coals, you can’t. I can walk on glass, you can’t. My socks never ever, ever smell. I can wear one pair of socks for an entire year. I’m good to go. I get to change my legs about every two and a half, three years. If my legs bother me I just take them off. There are great benefits.

Laurie Ferguson  11:45

What advice do you have for people?

Paula Golladay  11:47

Believe in yourself. I don’t care if you’re 10 or 90. Go out and try something. Find like minded people. Have joy in your life. Do something goofy every day, and forgive yourself.

Laurie Ferguson  12:01

We hope you found this episode and our series inspiring. We’d love to know how you are thriving while aching. Send us an email, a short video, or audio clip. Tell us your secret to aging gracefully, so we can share it with others in our community. Send it to thriving@ghlf.org Thanks for joining us for Thriving While Aching, a podcast that inspires and teaches you how to live a fuller life while safely managing pain. If you liked this episode, give us a five star rating and write a positive review on Apple Podcasts. It’ll help more people like you find us. I’m Dr. Laurie Ferguson, take care.

Narrator  12:46

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network. This podcast is made possible with support from Johnson and Johnson Consumer Health, sponsor of the Global Healthy Living Foundation.