This month we discuss what caregiving looks like for siblings from long distances with sibling advocates. We are joined by former SLN Board President, Pat Carver, Diversity, Equity & Inclusion Committee Co-Chair, Atikah Bagawan, and Peter Edmonson. We discuss challenges unique to caregiving for our siblings with disabilities from a distance and the siblings share advice for any other sibs struggling to find a way to make their long distance caregiving work.
Access the transcript of this episode here.
Some resources discussed in this episode are:
This month we discuss what caregiving looks like for siblings from long distances with sibling advocates. We are joined by former SLN Board President, Pat Carver, Diversity, Equity & Inclusion Committee Co-Chair, Atikah Bagawan, and Peter Edmonson. We discuss challenges unique to caregiving for our siblings with disabilities from a distance and the siblings share advice for any other sibs struggling to find a way to make their long distance caregiving work.
Access the transcript of this episode here.
Some resources discussed in this episode are:
Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information support and tools to advocate with their brothers and sisters and to promote the issues important to us and our entire families. Hello, and thank you for joining us for another episode of the sibling Leadership Network Podcast. Today we will be talking about long distance sibling caregiving. I'm joined today by a Chico Bhagawan Pat Carver. And Peter Edmondson. Thank you so much for joining us today.
Peter Edmonson:Thanks for having us.
Chris Berstler:Can I ask you all to go around and just introduce yourself? Tell us about your current work. And what led you down the path that you're on now.
Pat Carver:My name is Pat Carver. I, my brother Jimmy is 63 years old and I am 64 years old. We grew up in Virginia yet I've lived in Michigan for the last 37 years. He doesn't he communicates through gestures. He doesn't have the typical language, he has a pretty involved difficulty seeing and he knows what he wants. And I'm the closest person to him that isn't paid to be with him. And so that is a lot of the caregiving is working with his professional caregivers.
Atikah Bagawan:Hi, my name is Atikah and I'm currently in Michigan. So Pat, I'm currently a PhD student. My background is specialized. But right now I am doing research to support families of individuals with disabilities. A lot of what I'm focusing on is sibling intervention stuff. So I'm from Indonesia. So I live here but all my families are in Indonesia. And, you know, what led me down this path is actually my brother, I grew up with them. And I'm the oldest typical caregiving self and like, Okay, I that's all I know, all my life, just, you know, working with them. And so I decided to do that way. Yeah. And he's he is to know, one and a half years younger than me. So I'm not that far, but he's so much taller. And he always makes fun of me because I'm the shortest every time. Yes, so that's about me.
Peter Edmonson:And, and I'm Peter Edmondson, I'm, I am 33. My sister's is 41. And I currently live in New Orleans, where I actually have been working on kind of access and functional needs planning. For emergency situations, obviously, New Orleans is very vulnerable. But my sibling, my sister lives in Iowa, which is where I, I grew up. And so I have right now she lives with my parents. And my parents take on a lot of the caregiving responsibilities. Mostly, I am kind of just thinking about future planning and trying to work on that with my my family. And I should also mention I've been I've hopped around a lot. I lived in Japan for a bit New York, California. And so I've felt this kind of distance pretty much since leaving for college.
Chris Berstler:Awesome. Thank you for sharing. Thank you, everyone. So to you, what are some distinct differences between traditional caregiving and long distance caregiving?
Pat Carver:I think the most obvious is that we can't be with each other. And so that, you know, traditional caregiving, we can actually be there and see, and when you can't see what's going on, you have to be able to trust those providing communication about your sibling. So I think it can be that can be a good thing not being not being there. And then being there. It just depends on the relationship that you have.
Atikah Bagawan:I agree. I agree with that. Just like Peter, I have been away from home since I was 17. So it's been 20 years that I've been away. I go home here and there and he would come here with my family. Like it's, it's just like we don't see each other a lot. But when we do see each other like it's very, you know, intense and, like we're always together. But with this long distance is what makes it a little challenging to his, like his communication. He would write, to communicate, but also there's this one thing because, and one of my parents are still at home with him. So there's also still that gatekeeping for from especially for my mom, like I understand, but at the same time, it's like you have grown man. You know, like it's trying to get through that is a little something else to to hop on. I guess that's for me, because if it's traditional, I can, like straight away with, right on my mom just like okay, like this is not it?
Peter Edmonson:Yeah, I just want a second that same situation where it's like, I can't, I can't even ask my sister question without my mom answering for her sometimes. I mean, I trust my parents. But I don't trust that I know exactly what's going on by being so far away. And I'm sure that that communication factor
Chris Berstler:is huge. Definitely. Thank you very much for sharing. For you. In your current situation, what does long distance caregiving look like? So
Peter Edmonson:for me, like I kind of alluded to earlier, it's probably different than because I just I don't, I don't schedule any caregivers, I don't plan anything out like that. It's really all about thinking about the future, and what that transition is going to look like, and trying to sit my parents and my family down together to actually have some tough talks that nobody wants to have. And everybody literally wants to run away from it. But it does feel like work. And I am going to count that as caregiving. That's
Atikah Bagawan:what it looks like for me. Yeah, seem like Peter, I don't really have like an exact schedule. So my brother has a phone. But she doesn't really use it to communicate a lot with other people. Like See, like substance like so that's all he does. So sometimes just like my mom sometimes, like reply for him? And I'm like, I know, not like, no. But um, if my mom has questions about him, then I'll answer. Like, I'll let him I let her know like, okay, like, maybe try this. But this if it works for him or not? Yeah, it still looks like that. For me.
Pat Carver:My communication or long distance caregiving is, is very much planned. My brother has an annual meeting every year individual service plan. He lives in Virginia, and I live in Michigan, if I neglected to say that, but I'm actually Peter in Mandeville, Louisiana right now by I have he has his annual meeting in which we work with his social workers and his his staff. He lives in a house owned by a provider with three other gentlemen it's a it's a big house, it's in a nice neighborhood, I was involved with the very beginnings of group homes. And so this is what we dreamed of have happening. Unfortunately, you know, group many groups homes have have not followed the smallest better idea and they're run like institutions or nursing homes. I've been lucky, but I watched them like a hawk. But I, we have the annual meeting. And then from the annual meeting comes quarterly meetings, and then I speak with his staff that group home manager of at least once a month. But if as things arise, if something happens, they're always calling me I've got good relationships with the staff and with his social workers. And that was harder. And I entered into the situation, very distrustful. And that was based on him with his growing up and all the things that were not offered to him. And also I followed my path as an advocate for 50 years. And so I, it was natural for me to kind of come in with my dukes up and it took me a while to trust the folks. But besides doing that, besides, you know, working on communication, and trust and care, you know, believing that up, someone else can care for my brother, I send him packages monthly, he knows that he's got something new to do when when the package arrives. And I visit him quarterly at least that's been my goal is to get out there at least every three months. Sometimes it's more during the this pandemic, it's been much less, but it's all structured, except for when I'm with him and then when I'm with him, we just do things that brothers and sisters would do together. Like go on walks, go out, have a beer, go out to eat shop. He mainly just likes to walk so we do a lot of walking.
Chris Berstler:That's awesome. Thank you so much for sharing. Can you speak to any other challenges that are distinct for caregiving from long distances for siblings.
Pat Carver:Yeah, I think that you know, the the need that the the need to trust that these hands on caregivers are well informed about my brother's needs and wants and behaviors and as communication his behavior is and and that they attend to his unique needs. And that's really hard to do, you can't just go to annual meeting and read progress notes. And so I purposely work to develop relationships with his caregivers to hands on people, and they change a lot, but not so much at this corporation because they get paid pretty well. They're very unusual in this day and age, but even one of my brother's caregivers, she works the weekends, I found that was a sibling. And so when the SLN had their conference in Minnesota, several years ago, a couple years ago, I don't remember, I paid for her to go and to the sibling Leadership Network Conference, and we became very close there. So she keeps an eye out for Jimmy and knows what my values are. And she shares them and so she really does watch out for him. The other staff does, too. We've had quite a bit of regularity with the with the management staff, but the actual hands on people come and go. So that's a real challenge is the staff turnover also that he has had some housemates one house made my passed away, and so a new person came, and then another one. So the adjustment of the housemates, and who decides who gets to live there, and how do they know who's going to be compatible, and they've had people in there that have just disrupted disrupted their, their life. And so it's been a lot of, you know, it's just, it's just a common thing that happens when you have congregate living, it's unfortunate, he did have a real close relationship with the woman that passed away. And that was an interesting issue that we had to figure out the challenges our need for trust, and then the guilt that you have having someone else be in charge making decisions. And it's been hard. And I also unique, maybe, to me, but I don't know, the, the because I was a has been an advocate, I often received some negative feedback from my colleagues. So I've worked really hard all these years to get inclusion and community participation and, and, and good outcomes for people. And then when people would find out my brother's living situation, there would become some judgment about, you know, what we have chosen as where he lives. And I found that the best way to deal with something like that is through the sibling Leadership Network, you know, you you, there's a saying that gets tossed around not only at fitness place, but that there's no judgment amongst siblings and SLN. And so I have been able to find kind of my peeps, my tribe, within the older SLN folks that have same situations that I have, my brother was institutionalized. I got him out of there and into a smaller setting, and I just just never expected the questioning of my efforts or my interest in my brother. So that's been a real challenge for me. Luckily, I retired last year, and I don't really give a hoot what most people say, so.
Atikah Bagawan:Um, I think, for me, like growing up, my parents made sure that we are together, not being able to see him like objectively like from my point of view, but I had to hear it from other people. Like, subjectively, that's the hardest part because my first 17 years, I see him like right in front of me, right. But now it's like, this is challenging. I get, I really need to be there and to see, but at the same time, it's like, okay, that's not really possible right now. And this happened during COVID. So the whole family got it. So when he got it, I think he had a really bad fever and, you know, seizure. And at the time, the hospital was full, it was really bad. And he was unable to communicate and my mom had COVID so she can go to the hospital my dad had, but no one were able to go to the hospital, the only one that could go with my aunt, and my aunt doesn't really know how to communicate with them. Well, I was up most of the time so he can tell me what, what he needed. And so I can translate it to the doctor. I can translate it to be at, you know, other people that's in the hospital because my home was freaking out and like it was just chaotic. But part of it is, again, what Pat said guilt, right? Like, I'm here. And he's there. And just in general, like the whole family struggling, it was, especially that time in particular, and I'm here like, I'm not like, I'm healthy, like, good, but at the same time, there's that guilt that I think I should be there and do more.
Peter Edmonson:I think, like, a ticket and I are on the opposite side of hat and that guilt feeling because like we are, but at least for me, I, you know, I'm sure I'll feel that guilt if say, my, my sister moves to a different housing situation, whatever that looks like. But right now, it's, it's the guilt also compiles to I'm not with my family. To help them out, as well. I'm trying to do other things. And so like the, I feel like it's slightly different type of guilt. But definitely one of the big, bigger challenges. I was also thinking of how being long distance also, at least, I am sure, it's not that uncommon, like my parents hide things from me all the time that are very important. For example, my sister made a mistake in her savings. And so she lost her FSI. They didn't parents didn't tell me that. She laughter FFI that's a huge, that's huge for not just now, but it's also huge for planning the future because now we have less income coming in so and the family, my family might not see things as collectively because they want me to be living my life and not, you know, as they see it burdening me with things. So that's, that's at least been a challenge I've had.
Chris Berstler:So let's talk about the opposite side of that, can you speak to any benefits of long distance caregiving for siblings?
Atikah Bagawan:I think for me, I'm able to focus on what I want to do. And I know like, this is from a very cultural, you know, background, and in my culture, especially if you're a girl firstborn, the oldest, you're the one who's gonna take care of everyone. And there are certain expectations for me, especially if my sibling has more needs than others. So if I were there, I wouldn't be doing what I'm doing right now. Like being here, I can focus on the things that I want to do. So in the future, I can, you know, like I'm prepped, right, and so later on, if I, if I'm bringing my brother, I'm, I'm in a good position to be able to provide and whatever he needs and things like that. So
Pat Carver:I think one of the benefits is that time and space can really be good in any relationship. And I think that me not being there on a daily basis allows my brother to have the autonomy that he needs. Now, it's not autonomy in the way that he's going to go out and vote or shop or make decisions because his life is much more simpler than that. But he still deserves the right to his own being and I have a feeling if I was around and I might be overcompensating but that I would be the boss of him and I'm not the boss of him I'm not as keeper I'm not as determiner I'm, you know, I miss I'm a sister. And so I think that that allows it also allows a distance for me to not be and perhaps Jimmy to not be visited by those family, ghosts of expectations. You know, my our parents have passed but I was always the one that everyone said was going to take care of Jimmy so my five other siblings did nothing. And and so I you know, I'm the one that's involved now, but I'm not I haven't given up my life to be Jimmy's My Brother's Keeper I you know, I figured out a nice way to do it long distance Lee. And I, you know, I've learned a couple things that is a benefit is that people basically are good. And that people in this field are resilient and and offer love to people like my brother who don't typically demonstrate it in return. But once they get to know Him, they think he's incredibly cool and want to continue to work with him and have worked with him for years. So I think it it does help to allow you to keep faith in humankind
Peter Edmonson:being away, removed to a certain degree from daily life gives just a different perspective. And I think that that's that's a benefit especially if you're working with family or communicating with family or if you have a good relationship with professional caregivers as well that you have a perspective that that might be you have time to think about more long term perspective, people are focused on the day to day, it gives, it just gives a little bit more breathing room for at least somebody, that's definitely a good thing.
Chris Berstler:How has the pandemic impacted siblings who are caregiving from a long distance? How has it impacted you,
Peter Edmonson:as long as they haven't seen my sister, because I waited until I two weeks after I got fully vaccinated before I felt comfortable visiting, and sure, you know, long distance long distance, but I was normally still visiting at least twice a year. So to go, almost two years it felt or maybe it was only a year and I felt like forever, without visiting was probably the toughest thing. For me.
Pat Carver:I think that I agree with Peter, I mean, the worst part has been that you can't visit as much, we've kept up communication and again, the hands on the direct care staff, the swim really stepped right up to the plate. And they worked out a situation where where people would live in and where be one person for five days, and another person would come in for five days. And they were very astute about vaccines and, and, and maths, you know, all the precautions that they had to take. But they worked a lot of time that they wouldn't have otherwise, again, I think the pandemic has been able to show some real goodness in people.
Atikah Bagawan:It's very far at the same time. There's like quarantining, if I have to go back, right, and I'm in school, so it's, if usually when I go back for a month, I've been with them for a month. And since COVID, I be in quarantine for two weeks, I'm only see them for two weeks, which is like, things that just came up, right? Like, you're like my story before. If I were there, I would be able to, you know, pop him and like explained to him because at the beginning, he was having a hard time understanding why we can't go out. Because that disrupts us routines so much. My parents have a hard time because he just like, would walk out of the house and like be gone. And my parents wouldn't, you would go, because he doesn't like being you know, like being told you don't have you can't go anywhere. But it's very hard for him to understand why we can't go. It's one of those things that I go to my parents and like, tell him this way. And let's see how it works. But again, you know, there's a difference, right? But the phone, it can get frustrating at times.
Chris Berstler:So are there any specific resources that you use in your own long distance caregiving routine that you can recommend to anyone listening,
Pat Carver:the arc of Northern Virginia, where my brother, my brother lives in Northern Virginia, the arc has been a lifesaver. It may have helped that 60 years ago, my parents were one of the first people to start that ark. So we have a long tradition. And I remind them of that all the time. And so they have counted on me, I've done some work with the ark. But the I've gotten to know their their staff. And you know, they're an extra eyes, they even have a trust division within the Ark where they have hired advocates that work as trustees. And we did that for a little while with Jimmy and it worked out. But it really is the relationship that I have with the ark that they look out for Jimmy. I also think some of the resources to encourage other siblings to look at is the whole notion of self direction and self determination and how that looks at for your, your family and your your loved ones. And then the notion of supported decision making and how you know, the need for guardianship is not necessary and that there is alternatives. You know, I think that's really important because we don't want to be little parents. We're not our brother and sibling or siblings. Parents were their sibling, and our relationship is different. And we we don't want to be the boss of them, even though sometimes it comes naturally. Yeah, I
Peter Edmonson:want to kind of echo that. I actually find it really hard to point to specific resources because it seems like everything is so local. But the idea the notion of decision making as a family, including everybody, including your sibling, I think is just so important. So I guess I'm saying use your sibling as a resource. I finally got my family to me to discuss future planning after approximately four to five years trying and made sure my sister was there. And she just said things that surprised I think everybody but were very illuminating. And it it I think opened my parents eyes into the idea That action needed to be taken. And we needed to take things more seriously collectively. So your sibling is great resource.
Atikah Bagawan:I really like that. And I am on the same page with you to theater because resources in Indonesia, there's not a lot. So my parents do rely on me for versus Well, this is different. I went to SLM conference and there was this one particular session where it's like self determination for a sibling. And like the speaker, I forgot who but she gave us materials. And it was like the form of like, you can fill this out with your sibling, and then talk about like, what they want. And so I used that to for my parents, and I'm like, guess what? We can ask him, like, this is a thing. So I showed them the form and they're like, Oh, I'm like, yeah, all I need to do is just translate them. And then like, we'll see. Like, what what he what he really wants is 26. I'm pretty sure she knows what she wants. But I can't just say that to my parents, especially coming from my culture that consider like new, actually showing them like, this is a thing. And this is what people use are really helped.
Chris Berstler:What advice would you have for any sibling who may be considering a potential long distance move and is worried about the care of their sibling,
Pat Carver:I think that the advice would be to trust your instincts, get to know other siblings get involved in a sibling Leadership Network. And so that you can go to conferences and get forms or, and hear dynamic speakers and that, you know, the sibling Leadership Network has a whole lot to offer. So I think as your role as a sibling is something that, you know, you need to trust yourself and your instincts, I think that long distance doesn't have to be guilt ridden, or a longing for one another, you know, to contemplate your, your siblings need for autonomy and, and in leading their own life and, and reflect on quality of life versus services. Because there's many people who have lives full of services, but no friends wanted at
Peter Edmonson:my advice is to make sure that it doesn't overwhelm you. Or that you don't think that something is eminent, something bad is eminent, I always kind of had the feeling like when is the next shoe going to drop. And it meant that when I went off to my trying to do my own thing, I worked in video and film for a little bit, but I never really fully committed to it. Because I always thought I'd get a call that meant I had to go back home or something. But you know, that was kind of ridiculous. In retrospect, I didn't need to be worrying so much. I could have spent time pursuing more of a career in that direction, I've moved on to different things. And that's also fine. I think, you know, sometimes you can go through a lot of a lot. And you may feel that, you know, you only have this time for a little bit, and then you're gonna have to go back home or, but my advice is just to let yourself feel free from that. It's good for everybody, like Pat was talking about, it's also probably going to benefit your sibling.
Atikah Bagawan:I think for me, too. Maybe getting 2020s There's a reason why I'm still here and not there. And the reason is, I really want to go with what I want to do right now. So later on, I don't have to worry so much and you know, reap the benefit later. That's the one thing that I always tell myself, I'm not here because I'm selfish as a lot of people back home. But, you know, I know why I'm doing this long distance, caregiving. And it's for it's for us to but you know, that's that's the one thing I always remind myself that there's a reason and I will make the best of that reason. You know, keep going keep grinding and that's that's the that's the motivation. Every time you feel like, Oh, I think I need to be home. Oh, I think I need you know, like, it's not right for me to be here. This is too hard or because those thoughts will come keep reminding myself of why I'm doing this.
Chris Berstler:Many siblings feel an immense guilt associated with moving away from their siblings with a disability and having their own life. Is that something that you've experienced a lot of and if so, how do you cope with these feelings?
Pat Carver:Might go is a little different in that my parents made the choice of putting my brother in institution. And so for the 1015 years that he lived in state institutions, guilt was really horrible then. And I was just a year you're older than him so that, you know, I really didn't have any power in this situation. But since he has been free, and I had a big part of that of getting him out, the guilt is not so much. I do get asked from people like why don't you bring your brother to Michigan? And I just say, I didn't bring my other brothers to Michigan, why should I bring Jimmy to Michigan? And I find that that guilt, as long as people mind their own business, then the guilt isn't there. But if people ask questions that are inferring that I'm a sister, therefore, I should care for him on a day to day basis, you know, that that kind of leads to it. So you have to you have to be kind of strong, I think, and to, to not fall into that. But it's really, it's just that whole notion of I, I'm, I'm a sister, but I'm not the boss of him, or, you know, I'm not he has a right to his own life. And so I think that when people ask, Well, why don't you care for them, they may not really have that no idea that he has his own life, just because he has a disability doesn't mean that his sister has to care for him, you know, sisters are best at loving, I think, and so that, you know, that's how I've dealt with that guilt. It doesn't bother me so much anymore. But like I said, that's the stage in my life, I don't have much guilt about much.
Peter Edmonson:I feel like there's a lot of different directions that guilt can take. So when I think about it, I think about how, for example, technology has moved so quickly, there, if I were home, I could probably and when I do come home, sometimes, you know I set up. So my sister using the wheelchair, it's very limited mobility, so I set up lights and things, or so that she can tell Alexa to play the radio, like that type of stuff. I think that there's a lot of missed opportunities, because she doesn't have the networks to utilize technology that could be helpful in her life. And my parents are just completely inept at that type of thing. But, and that's just the part of daily life and fun, and literally games that I sometimes feel guilty because I feel my sister misses out on that. I mean, I have other I haven't I have two sisters. So I'm not the only sibling is the other thing. So it's but that's just like another example I mean, of where, where guilt can come from and how I can just come from different angles. I feel like,
Atikah Bagawan:this is a very interesting question for me, because I don't know the answer. So figuring it out, um, there was one moment where he said that he wanted to get married. And Indonesia, you know, for a man is to provide it, and it's very traditional, and my parents are still in that as well. And it's not like here, right? And like in here, there's like people with disabilities get do get married, and like they have they have their own marriage and you know, things like that. But that is the one thing that is still with me. Like to one day I will do these things. And my brother wanted it to how and it's very hard to find like the potential partner. So like he doesn't he I think he was just saying it because it's because he wanted a partner. Not because like there's a particular the girl that she liked that he wants to marry, but he wants companionship, it's that part where my gosh, I and I still don't know how to have something.
Chris Berstler:That's fair. I think we're all still figuring some part of that out. So how has your long distance caregiving role changed over time? And where do you see it progressing in the future?
Pat Carver:It's changed over time. And that trust has been built with people that care for him. And so it's much more relaxed and congenial and loving. And so it's really great. I think what how things may change is if my brother becomes infirmed or his his supports fall apart, then I will have to bring him to Michigan because there's no one else to care for him as it is. But he I have other siblings, but they're not as close but who knows maybe they will someday get closer to my brother to their brother. But I think that's the thing that has changed is that I don't feel a big need right now. But if he does become more needy, because of illness or or further disability or You know, just circumstances, then I'll step in and he'll come live with me. But for now, it's just regular adult siblings living their own lives,
Peter Edmonson:I've basically gone from thinking that I had a little bit of, of time to, to go crazy in my life, and then like rushing back home to then knowing that I would likely to be responsible for wherever my sister ended up to actually, you know, growing into more of a role of a facilitator through my family space, which I think is just also part of my professional development helped me in that personal development, too. And in the future, I think that that's going to continue with research and building relationships with wherever, my, my sister ends up.
Atikah Bagawan:Yeah, mine definitely changed over time, from, you know, being able to see her all the time and know, and whenever we have a call, he always asked me when I, when I come back, you know, it's, it's, it's been like that since I've been away. But we do see each other before COVID. And then progressing into the future. Engineers that we don't really have the resources like we have, we have here, like until I feel like my parents want him to be with them. And you know, since he's, he's an adult now, and my mom is like, like, she's taller, right? So I asked him, like, I asked her if she wanted to hire someone to, you know, just daily, like with him, or like three times a week or twice a week. And so I think they're working on that. But in the long run, like later, he'll be with me. But I do have another brother who's also typically developing and we talk, it's both of us. We talked about it with other parents, and my brother and I have been communicating about this. And are, we're in this together. Because the resources that we have in Indonesia, it really is, depending on a family member,
Chris Berstler:how does one begin the process of building and maintaining the support network needed for long distance caregiving,
Pat Carver:I think with great intention or with intention, with someone like my brother, who is not demonstrates that he doesn't need or want people in his life, I still have tried to set up a circle of support for him. And that's what I did a lot in my career is set up support circles for people with disabilities that I would work with. It's been a given take. I've gotten some of my nieces and nephews involved my niece involved with my brother's life, she looks out and helps him and i times i also exchanged at one point, I was looking out for a guy who lived in in Michigan whose sister lived in DC, and she would go check, go see my brother. So we did for a couple years, this exchange, I did a circle of support for him, she went out and checked on Jimmy by monthly and went for walks and stuff and so but you know, I It's hard when someone's not social to try to inflict social relationships on them. But uh, you know, I think holding on to your family members and friends and family of that know, your, your sibling, people that know them are the ones that are going to look out for them the most. And so, you know, if you can build that effort, that always helps.
Atikah Bagawan:I feel like it'd be the same like, like, at or, and it's the same, like right now too, with my brother. And for him, like he's more comfortable with people that he knows, I'm just maintaining that maintaining what's what's there. I think that's the best for him.
Peter Edmonson:Having your own support network is also probably an essential part of it.
Chris Berstler:So how important is communication for successful long distance caregiving? Is it possible to over communicate with your siblings immediate caregiving team?
Pat Carver:I suppose it's always possible to over communicate, but I think if you were focused on your sibs, well being you know, the, the, the communication is of utmost importance. You know, I believe any communication is is important.
Peter Edmonson:I'm gonna second pat on that. I'm not I have never, and my forgiving team is mostly my family, but I've never over communicated
Atikah Bagawan:I guess like I communicate to my parents, and it's like, just their way of translating of what to communicate it that's sometimes where it gets a little. But that's, that's about it. And I just have to like clarify. Like really? Hi. I'm trying to say. Yeah, that's, that's mostly what it is.
Chris Berstler:How do you celebrate holidays and special events when you can't physically be with your sibling?
Pat Carver:Like I do with my other siblings, we send cards and gifts and the way in which I celebrate with his staff, the people that care for him is but a gift giving times I'll give them gift cards or cards for the Kroger grocery store gas stations, because it's really kind of illegal to give them money, I guess, or that's a policy. And what Jimmy, my brother turned 60, which is a big deal we had, we went home and had a big party at Texas Roadhouse, which is the place he likes to eat. And then everyone in their brothers came, and it was really great. We couldn't do that very often. But it was a special occasion.
Atikah Bagawan:We have to do it. video call. So what's on video call to the rescue? Yeah, mostly just like, we have IID. So during he just like, say hi. And like happy? And what do you guys do? Because we have our own tradition. And I would just ask him, like, it was like, this is nice. And I'll do my own thing now after like, we just talk and you've been chosen. Okay, thank you. Bye, bye. But yeah, it's just mostly video call,
Peter Edmonson:tried to do video calls. That's not good for my parents. And also phone is easier for my sister to use. So mostly just talking.
Chris Berstler:A teacup has being a woman of color impacted your journey as a sibling who gives care from a distance? If so, how in what advice might you have in regards to this,
Atikah Bagawan:most of this challenges, but I do experience that actually coming from my own home country, there's a lot of that, oh, you're being selfish for not being there. Your parents are growing old and you're not there to take care of your sibling. And, you know, it's time for you to get married. No. So you can have like your own life. And so you can take care of your it always ends up with so you can take care of your right. Um, especially like 28, a lot of my friends have kids already. A lot of that come from actually from my country. Like from my cultural background, it's it is what's normal there. Sometimes it does affect me. But at the same time, like, again, I tried to tell myself like, Oh, I'm here for a reason I'm doing this for now, for a reason I've been home for so long. And it's not like I'm, you know, party. So I'm working really hard. So I can, you know, I can I can do what we need to do later, eventually will, will take care of my brother. But again, like trying to tell myself and having a support a thing that's very, very helpful. My friends and like people that I'm very close with the ones that's very helpful to me, including my advisor, who knows, sometimes like, I don't know, if I can do this, and then she's like, No, you can. So it, it really helps. And also like your organization, as well. And it really helps to know that it's the the things that I'm choosing for myself right now. It's okay. And, you know, sometimes I feel the same way when I'm here because also in that Islam, community, right. It's almost the same like back home and here. Again, like the support system, and also there's a lot of practice and deprogramming myself.
Chris Berstler:So, finally, what parting words of encouragement might you have for any long distance sibling caregivers out there who are listening right now?
Pat Carver:I think one of the most important things is to get in touch with the sibling Leadership Network, become a member if there's a State chapter, get involved there. I think that there's just it can't be said enough the importance of having like minded or not even like minded we could be completely different minded. But this sibling shared relationship is something that binds us and I think it's really important to seek support and input from from other siblings. I think it also we have to, in order to trust, we have to build relationships, and so you have to take time to build relationships. And you have to honor those caregivers and appreciate them and I think that that's harder to do when it's family members, you appreciate them and of course you honor them but you also wish they would get out of the way a lot of times And so it's really important to take that time to think about the importance of relationships. And the trust that comes with long term, long distance. I think one of the ways that you can can help the caregivers, your sibling caregivers is to show them appreciation. And some of the ways in which I've done that, again, is with gift gifts and refreshments. And when we have meetings, I'm always the one bringing the food and it's not just donuts, it's like all the whole breakfast. I write thank you notes and write cards and holiday gifts. And I live in the town of the University of Michigan. So every single staff person has their own U of M. Jersey, and you know, I just kind of up play, that they're receiving something from the University of Michigan, and you know, that they'll relate that to Jimmy and then you know, I just think you just have to honor the people in the best way that you can.
Peter Edmonson:I think like, if you breathe, it's gonna be okay. You got to be kind to yourself, everything takes time. And the older you get, I think, the more accustomed you get, which is, is a good thing. And I hate when people say this to me, but you know, you need to take care of yourself to take care of others is a really, it's a really important thing. It has been a very encouraging thing for me
Atikah Bagawan:to remember. Yeah, I'm actually gonna quote Peter, I think he said this, like, Midway, the support that you have for you will eventually like, support your siblings as well. So like, just don't forget to, to look for support for yourself. Because if you can't, really, if, if you're having a hard time taking care of yourself, it's this the longest and caregiving will get more challenging.
Chris Berstler:Awesome. Thank you all. So very much. This has been an amazing, enlightening conversation, one that I will personally get some use out of. So I really appreciate your time. Thank you so much. Thank you. Thanks. And for anyone listening, any resources that were mentioned in the podcast, make sure to look in the descriptions, I will put links down there for them. Also, check out our caregiving page underneath our adult Resources tab on our new website, and we also have a COVID Resources tab there as well. Check that out for safety tips on how to get back out there and hanging out through. Find resources, tools and information about the sibling experience on sibling leadership.org. The sibling Leadership Network is a nonprofit and we rely on support from our audience. Find the donation button on our homepage and contribute to the ever growing sibling movement.