Care Partners in Action: Celebrating Friendship and Support

Care Partners in Action: Celebrating Friendship and Support

Episode 177 – Podcast Transcript

[(00:00)] Stephanie Buxhoeveden: [Music] Welcome to the Can Do MS Podcast. I’m your host Stephanie Buxhoeveden. I live with MS and I’m also a clinician and MS researcher. Today I’m thrilled to welcome our guests, Sharon Vaughn and her care partner and friend Eileen Debois. In celebration of National Caregivers month, they’ll be sharing their inspiring friendship and the unique ways they support each other. Thank you for joining us today, ladies.

[(0:45)] Sharon Vaughn: Hello. Hello.

[(0:46)] Eileen Debois: Hi.

[(0:47)] Stephanie: Great. Awesome. So glad you’re here. Now, you have been friends since the 1990s, which was long before Sharon’s MS diagnosis, but what first brought you two together as friends, and how has your bond evolved over the years? [Music]

[(1:03)] Sharon: Well, I guess I’ll start. We… our friendship, uh, started at work. We were first, you know, we were acquaintances and [coughs] we noticed that neither one of us fit in socially at work with our coworkers even though we were individually good at what we did, we were intellectually good. So, therefore we just kinda bonded together. And so that’s how we got together. And Eileen can talk about the other stuff.

[(1:34)] Eileen: Mm-hmm. And we noticed as we started to talk that we had a lot of things in common other than our careers. And, um, so that kind of, that friendship kind of evolved.

[(1:49)] Stephanie: Awesome. And then how did it evolve after you were diagnosed with MS?

[(1:54)] Sharon: Well, um, I-I don’t really know, but she still was always a friend to me and it didn’t matter that I had MS or not. And she was always there for me. And what helped was that I didn’t feel alone though. That-that’s how, you know, after that, that’s how that kind of helped because I had gone through a lot of things. She had gone through things and then we were just there for each other as friends…

[(2:26)] Stephanie: Yeah.

[(2:26)] Sharon: … and that friendship continued.

[(2:28)] Stephanie: Yeah. I think that’s so important, right? It’s not just you, Sharon, that needs the support, but also Eileen at times. Can you tell me a little bit about how the friendship has been equal in that way?

[(2:42)] Eileen: Well, first I think Sharon went through a divorce first. Um, and I was there for her. Um, there was a lot of stress and a lot of, um, angst going on with her. And I was there to support her. Not too far after that, my husband passed away and she was there completely to support me. Um, and we each needed each other at different times in our lives through our me-, through these, uh, stressful moments. And we’ve been there. Each of us has been there for the other one.

[(3:25)] Sharon: And I-I-I’d like to add that Eileen has so much patience because through MS we go through the mood changes, we have the anger and we lash out and we don’t realize it until it comes out of our mouth. And then we’re like, oh, did I say that? And Eileen is just so patient that she listens and then when she’s had enough, she’ll say, you know, I think we need to put a little space in between ourselves. So, um, I’ll talk to you when you calm down. Goodbye…

[(3:56)] Eileen: [laughter]

[(3:56)] Sharon: … and hangs up. And she says it so calmly. And I’m… and she does that to me. And that helped me to realize, oh man, my attitude. I had the anger issues and it helped me to work on that because she was, that’s how patient she was.

[(4:16)] Stephanie: That’s what all partners do, right? No matter what the relationship is, they make us better. They support us in the difficult times, but they also bring out the best of us. And I definitely see that in you, in your relationship with each other. But Sharon, you’ve mentioned that after your diagnosis, you were most afraid of being alone, especially then after your divorce. So how did your friendship with Eileen help you navigate that time? And how have you both adapted to the challenges that come with MS?

[(4:47)] Sharon: Well, I was feeling alone, but Eileen and I, our friendship had developed and there was trust. And so therefore I was able to be vulnerable with her, which helped the relationship, our friendship to develop. Plus it helped that she lived on the other side of town too, so she wasn’t that far away. So we could call each other. And she helped me with so many things that I didn’t realize. Especially when you feel that you are alone, you worry about how am I gonna pay for everything? How is everything? Am I going to be able to stay where I’m living? Am I going to be able to have money to buy food? All those kinds of things. And Eileen is good at guiding people on that. So she guided me to the point that I felt a lot more comfortable in that, yes, I can do this. But it, again, it’s patience, it’s trust, it’s understanding. And also she helps when I feel down, I can call her and she can call me. And when I… sometimes we get with the MS that we get fatigued and we don’t wanna do anything, well, guess who’s there to help me? I-I like to cook, but I can’t do the chopping. Guess who cuts? She’s my sous chef. She comes and she cuts and she does whatever, and we cook together. And that’s fun. So then I get the energy to do things. I, you know, she, um, she actually takes out my trash cans for me because I was struggling. And she says, no, I’m doing it for you. So that-that kind of has helped the challenges that I go through.

[(6:36)] Eileen: (And it’s also…[?] I wanna add that, well, we do a lot of those things together. Like if I can see that she’s down and doesn’t… and-and is procrastinating and just letting things go, then I’ll come over and I’ll say, “Okay, let’s do this.” And I start by emptying her dishwasher, which is usually had been run. And the dishes are clean and she hates to empty it. And I love to empty it, [laughter]. So I-I start by doing that so we can clear the clean things away and then start on getting the dirty things done. And then as soon as I get started, that gives her a little more impetus. And then we work together and accomplish things. She’ll wash and I’ll dry. And you know, we kinda have a routine going and then things get done.

[(7:25)] Stephanie: I love that. And I know asking for help is hard and doesn’t come naturally for most people. Myself, you, we’ve all, I think, can relate to that feeling. But it’s good to hear that not only have you figured out that it’s important, but also it’s made the tasks that you were once struggling with more fun ’cause now you have somebody to do them with. And I’m hearing both of you really feel good when they get to help the other one. And that they, that you’ve learned that offering and accepting help is really positive thing.

[(8:01)] Eileen: I just wanna say one more thing. I think that as the, um, care helper, I have to sometimes override what Sharon says. ’cause she will a lot of times say, “No, I don’t need that. You don’t have to do that.” And I say, “No, it’s, no-no question. I’m doing”… like with the trash cans, she didn’t wanna let me do it. She would say, “Oh, I can do it. I can do it.” And I was like, “I’m doing it. End of discussion,” and that, and then we move on. [Laughter].

[(8:29)] Stephanie: Yes. Sharon, how-how have you received that advice?

[(8:34)] Sharon: Well, at first, earlier in my stages of MS I’d be like, I can do this myself. And now I realize if I want to do things, I have to accept help because I think back, I help other people when I was able to. So now let me give them the joy of helping me now. And so I think of it in that, those terms. So when I think I have, I have another friend who-who cleans for me. ’cause I used to do that, but I can’t do that all the time. And when she says, “You want me to put this downstairs?” And I go, “Nah, nah, nah.” She comes back next month. It’s still in the same spot. So she knows now if I say no, she just does it. And I am so thankful and so appreciative for that because it gives me time to be myself and to enjoy my company with my friend.

[(9:34)] Stephanie: Yes. Yeah. I love how you put that, the joy of helping, right? Because it is a joy. Now, you have such a unique way of supporting each other. Can you talk a little bit more about how you’ve creatively supported each other’s independence?

[(9:48)] Sharon: [Laughter]

[(9:49)] Eileen: Uh, okay. Um, okay. We went on a cruise. Um, it was to celebrate Sharon’s retirement and my daughter’s graduation from high school, like the, a cruise ship is gigantically long, you know, as far as walking. And even then, that was 2010, but she still was struggling with walking and she, her, she had a bad back. So, um, so we rented a scooter, or she rented a scooter. So it was in the, in our cabin when we got there. And, um, so she was using the scooter, so she was totally independent to go around the cruise ship where she wanted. And a lot of times she would make it go fast and I’d be flying, running back behind her trying to catch up. And all [clears throat] the other passengers would be laughing, looking at us. You know, it was… we made a scene. [Laughter]

[(10:48)] Stephanie: I love that. I can see you two making a scene on a cruise ship.

[(10:50)] Eileen: [Laughter]

[(10:51)] Sharon: [Laughter] And it was, it was just, it opened my world because I didn’t have any problems using the scooter. And at that time, people would come to, up to me. I, it, I just couldn’t believe people did this, and said, “Why are you using a scooter? You don’t look like you need the scooter.” And I, at first I got a little, you know, my backup and then I said, well, they’re asking questions so I’m going to answer them because I need it. And that’s what I would say. And yet I would ride the scooter to the gym, walk into the gym, do my weights and everything, and ride my scooter out. Take my scooter to the disco park, park my scooter, dance right next to my scooter, get back on the scooter. So it allowed me to do things. And that’s-that’s really opened up my eyes and said, okay, I don’t have to be stuck in that.

[(11:52)] Stephanie: Yeah. And you had said to me in a prior conversation that-that it was Eileen really who encouraged you to use the scooter. The cruise wasn’t something you thought was within reach and that experience and her encouraging you to use that helped you really maintain independence.

[(12:12)] Sharon: Yeah. ’cause I think we went on three more cruises after that.

[(12:15)] Eileen: Yeah.

[(12:16)] Sharon: And they, uh, they would go off the ship. I could go off the ship with the scooter. They would go, her and her daughter would go off and do things. And there were so many things to do on the ship. I didn’t feel that I was missing out on anything. And she noticed that, she encouraged a scooter. She noticed I was struggling going up my steps. She encouraged me, “You know, you might wanna think about getting a chair lift.” Within days I say, “Guess what? The guy’s coming over. Would you help me decide which one I’m using?” Because I take her advice because she can see things. And that’s what a care partner, I call my care friend does. They can see things that we don’t notice in ourselves. And we have to put our egos aside, put judgment aside and realize that our friend is there to help us so that we could still be independent.

[(13:15)] Eileen: And now to continue with that scooter thing, Sharon has recently purchased the scooter for home because she doesn’t, she can’t get out to the stores anymore. And she used to like that and she’s kinda become a homebody. And, um, and we’re trying… we’re gonna be working with learning to work the scooter together because it has, I don’t know how many parts that we have to learn, she has to learn how to put it together and I’m going to be there supporting and then we will be able to go in the store and she’ll be able to ride in the scooter at different places that don’t have them.

[(13:54)] Stephanie: Yeah.

[(13:54)] Eileen: And, so that’s our next goal to, that we’re gonna be working on.

[(13:59)] Stephanie: I love that. And you all are very much willing and able to try pretty much anything, right? There’s been a lot of different hobbies you’ve explored together, is that right? [Laughter]

[(14:10)] Sharon: [Laughter]

[(14:11)] Eileen: Yeah. [Laughter]

[(14:12)] Sharon: [Laughter] Yeah.

[(14:13)] Stephanie: Yeah. [Laughter]

[(14:14)] Sharon: [Laughter]

[(14:16)] Stephanie: What’s the secret? Tell us the secret for-for trying new things or tell us a little bit more about what you’ve done together.

[(14:23)] Sharon: Yeah. We did do, see Eileen has a way of getting me to try things ’cause she is just a fun person. I was always… people don’t understand how we became friends. ’cause I’m a serious person and she’s this fun, loving, laughing, joking person. And I’d be like, oh my goodness.

[(14:43)] Stephanie: [Laughter]

[(14:43)] Sharon: But I realized that’s what I needed because she balanced me out. And so, for example, she wanted to go to Weight Watchers, will you go with me? Sure. I went, she quit and I continued.

[(14:56)] Stephanie: [Laughter]

[(14:57)] Sharon: All right, there’s this, um, nonprofit organization. She says, let’s go, let’s go, let’s do a workshop. I did. I became… I started working for the organization. She left.

[(15:07)] Eileen: But now I’m back. But she’s-she’s a facilitator. She built it one step further. [Coughs] And I knew as soon as I got into that organization, it’s-it’s a, for, uh, racial justice. And that’s a big thing ’cause people can’t see us. But we’re, she, Sharon’s black and I’m white. And so we-we have continued to work for racial justice, both of us ’cause that’s important to both of us. So I found this organization and I went and I attended and I was like, I know it’s perfect for Sharon. I know that will be a great thing. So I encouraged her to join it. And so she went the next time they had, um, an o-, um, what is that? A session? And now… and then of course she evolved because she’s that person and she’s a wonderful facilitator, especially for adults. I mostly work with kids. She’s great with adults and workshops and things. And I knew it would be, she would be a perfect fit. And she is. She’s the facilitator now. And how many groups do you have? Three, Sharon?

[(16:19)] Sharon: Yeah.

[(16:19)] Eileen: Yeah. And she-she does a wonderful job with it. And it’s-it’s a very rewarding thing to do. And now this time round, I’m-I’m an, I’ve entered in as a participant again and she’s the facilitator, one of the facilitators of-of our group, [laughter].

[(16:38)] Sharon: I had told her, you cannot take anything that I’m working on. And finally I said, all right, you can come in…

[(16:45)] Eileen: [Laughter]

[(16:45)] Sharon: … don’t let anybody know you know me. But then I’m telling these stories and they’re always about her…

[(16:50)] Eileen: [Laughter]

[(16:51)] Sharon: … ’cause she sits there with a smile on her face. The other thing is, she’s a square dancer. I can’t square dance, but how does she get me involved? When they have their annual dinner or different functions, guess who takes the money?

[(17:05)] Eileen: [Laughter]

[(17:05)] Sharon: So she gets me there because I love to watch them square-square dance. So she gets me out and gets me to help, you know, so I take the money.

[(17:15)] Eileen: [Laughter]

[(17:16)] Sharon: And so-so [laughter] that’s, you know, and she-she helped me… she found someone to clean before the current person that I have. She found my cats…

[(17:28)] Eileen: Yeah, [laughter]

[(17:28)] Sharon: … because after I had put my cats down, my next three cats, because I don’t take one at a time, she found four. So she does things for me…

[(17:38)] Eileen: And I was never a cat lover, but I always find cats for her [laughter]. But now I adore this last ca-, this cat she has now. I’m in love with him, [laughter].

[(17:50)] Stephanie: I love it. And I love that you two have such an understanding. You really know each other and before the other person knows it, you know exactly what they need. And I love that you’re all about getting out, living life to the fullest after retirement. I think it’s just a beautiful thing. And it’s really not easy to maintain a long-term relationship either with a romantic partner or with a friend. Um, so what’s the secret there? What would you… what advice do you have for people

[(18:22)] Eileen: Respect and trust? Those are the two main things because no matter what little tiny thing we would have an issue with, the big picture is our friendship is there and important to both of us. And-and-and-and little things can go by the wayside. ’cause who cares? We know we have love for each other and respect and, um, and that’s what matters most. And the little things go, don’t matter, you know? And-and I think as we’ve gotten older, we’ve realized that more and more. And I don’t think there are any little things anymore. I don’t ever… we never… I don’t thi-, I can’t even remember the last time we’ve disagreed or had a, had any kind of argument. I don’t, I can’t remember it. So I mean, I think we’ve evolved to just be there and caring and as-as the love and the caring and the trust grew, so did, uh, the kindness, more kindness towards each other.

[(19:29)] Sharon: And I’d like to add to that. The other thing is we’ve remained independent of each other.

[(19:35)] Eileen: Yes.

[(19:36)] Sharon: She has her space. She has her house. I have my house; her daughter has her house. So we give each other space because we found out we both are only children so we’re used to having our space. So she-she comes over, but she lets me know we talk about it. So having that independence and not always being on, you know, seeing each other or next to each other. Yeah, we may talk on the phone, but I have my time. She has her time. I have my friends that are different. She has her friends.

[(20:16)] Stephanie: Yeah. And clearly humor is of course…

[(20:19)] Eileen: [Laughter]

[(20:20)] Sharon: [Laughter]

[(20:21)] Stephanie: I love. It’s such joy being around both of you because you exude this like very positive outlook and, but at the same time you switch to the serious pretty seamlessly. So in just the short time we’ve gotten to know each other, I really admire the balance between handling the challenges and the seriousness of life. But then right away being able to switch to-to humor and finding joy and just laughing about everything. It’s a, it’s really beautiful.

[(20:49)] Sharon: Mm-hmm.

[(20:49)] Eileen: Thank you. Thank you.

[(20:51)] Sharon: Thank you.

[(20:52)] Stephanie: So what advice do you have for people who may be feeling alone and isolated? They don’t have an Eileen, they don’t have a Sharon. Um, how can they go about building a support system or finding those friendships that can grow into something as special as yours?

[(21:07)] Sharon: I would say don’t discount anybody because you would be surprised if you are open. You’ll find out that you have things in common with other people. And remember, it takes time. As I said, Eileen and I started out as acquaint-acquaintances. We work together and it built from there. We’ve been friends for 34 years, so that’s a long time to develop a friendship. And you have to be open because yes, I’m black, Eileen’s white, I was open to being friends with her. The other thing is think about your interests and find like-minded groups and alright, I don’t get out, but guess what? I have Zoom. I have podcasts. I can find people that way. And don’t worry about your appearance, don’t worry about people judging because my thing is, until they start paying my mortgage, they can’t say anything to me. So just go and be yourself and you’ll be surprised. Find groups like Can Do. I have friends that I have met on Zoom from California, Washington State, Arizona, Tennessee, Florida, Maine, New Hampshire. And where do I live? New Jersey. And I have friends, I Zoom with them once a week, so don’t count out Zooming.

[(22:42)] Stephanie: Eileen, anything to add?

[(22:44)] Eileen: And she said it all, I think [laughter].

[(22:45)] Sharon: Oops [laughter].

[(22:48)] Eileen: Whatever your interest is, try to find a Zoom group. That way if you can’t get out, you can still reach people. And I think that’s what makes us happy when we interact with people no matter, in no matter what capacity.

[(23:04)] Stephanie: Yeah, definitely. And we have a couple of communities like Can Do MS, so if you’re looking for an MS buddy, we will link to some of those opportunities in the, uh, in the description of this podcast. But any, is there anything else you’d like to share?

[(23:21)] Sharon: I feel for myself, as things happen to me, I’m still having fun. I still can laugh. And I find that laughter makes you lighter and it makes you happier.

[(23:34)] Eileen: And-and I think it’s always important to consider reinventing ourselves because as we age and as our illnesses, whatever our illnesses, you know, MS particular for Sharon, but I have some also, um, as they progress in different ways, our bodies change, our mindset changes, but we have to reinvent where we are at that moment and as, reassess and learn to enjoy where we are at that moment and still enjoy life and be po-, as positive as we can be.

[(24:19)] Stephanie: Awesome. Thank you all for being here, giving us a glimpse into your friendship and how your care partnership works. And I just wanna say thank you. [Music]

[(24:30)] Eileen: Mm-hmm.

[(24:30)] Sharon: Thank you.

[(24:31)] Eileen: Thank you. This has been fun.

[(24:33)] Sharon: Yes, it has been fun.

[(24:35)] Eileen: [Laughter]

[(24:36)] Stephanie: [Music] Looking forward to hearing about your next adventures together. [laughter]

[(24:38)] Eileen: [Laughter]

[(24:40)] Stephanie: [Music] Thank you for listening to this episode of the Can Do MS Podcast. If you liked this episode, please leave us a rating and review on Apple Podcast or Spotify. We really appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do MS Podcast. Check out all of the care partner resources and care partner programs at candoms.org. That’s cando-ms.org. Until next time, be well and have a great day. [Music]

[END]

This podcast is possible thanks to the generous support of the following sponsors: