Episode Transcript
[00:00:00] Speaker A: You and I, we can just say, hey, I'm going to the beach, throw some towels in the car, and, you know, fill up a cooler and run to the beach, and we're done. But with him, we either have to get medical transport or he does have a van. We have to make sure that there's two able bodied people to pick him up, get him in the van, because the lift is broken and I haven't found anybody to fix it, and then get him to the park or the beach or whatever. But then you have to also remember, he's in pain all the time, so moving him causes him more pain.
[00:00:35] Speaker B: Welcome to another episode of 3564, a podcast for the middle. My name is Karen Stones, and I am your show host. Our episode today is quite unique, and it's about something I haven't seen addressed out there in the podcast world, in the blog world. In fact, I don't think a lot of people are talking about this because it's a difficult subject. And the subject is siblings. Caring for siblings. Birth rates are at an all time low, and when we look at the us census data, we're seeing that one out of every five adults is child free. We're also seeing that about 40% to 50% of the us population is unmarried and or single. So what happens when people who are childless and unmarried need caretaking, whether that's from a chronic health condition, a mental or physical disability, or a sudden illness that takes away someone's capacity, what happens? Well, more and more, we're finding that siblings are caring for siblings. I actually look at my own personal life right now, and my own father, who retired, started beginning exploring what retirement means to him. And all the travel and amazing experiences ahead quickly changed when his older sister had a devastating stroke. Many of his days are filled with sourcing the right hospital bed, making sure.
[00:02:30] Speaker C: The catheter stock is up to speed.
[00:02:33] Speaker B: The meds, the doctor's appointments, the PT, you name it. Caring for anyone involves a lot of sacrifice, a lot of time, and a lot of coordination. Now, I can just tell you that my heart goes out to all of you who are making such a sacrifice for your family. I want to give you some encouragement and support, and one of the ways that I think I can do that is by normalizing this experience.
It's quite common, and many of us as listeners will end up caring for a sibling. Today, I want to welcome Mary Cook to the show. Mary is a very good friend of mine, and I actually had the privilege of meeting her at work. She quickly made me laugh, and I enjoyed any kind of meeting or project that she was involved in. Today, she's actually serving on the podcast team as the Markham director, and she is here to share her story. Welcome to the show, Mary. It's so good to have you.
[00:03:45] Speaker A: I'm really happy to be here.
[00:03:47] Speaker C: I don't know if you know this, my listener friends, but Mary is behind the scenes on almost any written word, on our website, on our blogs, on social media. She is really the content whisperer. And so thank you, Mary, for all the work you do for the podcast.
[00:04:07] Speaker A: You're welcome. It's fun. It's a lot of fun. Thank you.
[00:04:10] Speaker C: Well, today we're here to talk about medical crises, in particular with siblings. So why don't you tell me about your large family?
[00:04:21] Speaker A: Okay. I am one of eight. There's six sisters and two brothers. My older brother was born with cerebral palsy. He's 62.
[00:04:31] Speaker C: Okay.
[00:04:31] Speaker A: My parents passed away. My mom passed away in 2017. My dad passed away in 2019. So after my mom died, we sort of started taking over the care of my brother. And then after my dad died, obviously we had to take over all his care.
[00:04:47] Speaker C: What is cerebral palsy? Like, what are the conditions that that involves?
[00:04:52] Speaker A: Oh, my gosh. It's a wide range. I mean, it can be everything from, like, being completely bed bound from day one to being just having some speech impediments, having some muscle weakness, that kind of thing. My brother's a little on the higher functioning end, or he was when he was younger.
[00:05:12] Speaker C: Okay.
[00:05:13] Speaker A: He was born three months premature, so his brain didn't develop completely. And also, he was born at home, so oxygen deprivation at birth, so that affected his lower limbs. He had braces and crutches growing up. Went to the same school we all went to, even got through, I think, sophomore year in college.
[00:05:33] Speaker C: Wow.
[00:05:33] Speaker A: Until the spasms. In this case, most cerebral palsy patients will have muscle spasms, and they started getting more and more debilitating for him. He doesn't have any physical impediment to his speech, whereas a lot of cerebral palsy patients do. But as he got older, the spasms got worse and have made him become bed bound.
[00:05:54] Speaker C: Wow. So tell me what kind of care he needs to live on a day to day basis.
[00:06:02] Speaker A: So my dad was brilliant, and my dad worked out to get him into his own apartment. Okay. And that happened 30 years ago, 20 years ago.
And in doing that, he also discovered some resources with the state. There's IHSS, which is in home support services, and there is a agency called it's now called momentum, but UCP, called UCP United cerebral Palsy. As far as I know, southern California. There's arms in Orange county and in La county. He lives in La county, so he has an attendant from IHSS, Monday through Friday, seven to three. And then the UCP people cover from three till seven the next morning. So they help him with bringing him food. He can wash himself, but so they'll bring him his toothbrush and washcloth and stuff like that. He needs to be stretched. He needs to have muscle rubs, stuff like that. He needs help getting to the doctor. He generally can take care of his own, making his own appointments, calling spectrum to set up his intranet. He can do all that. He's extremely intelligent, but he also, as he's getting older, has more problems with communication and with pain that make it harder for him to do things. And so my sisters and I, we'll help him with doctor's appointments with. He was recently in the hospital. We helped with that, getting him to the hospital, coordinating that with his caregivers, getting him home from the hospital, cleaning his apartment, just a little bit of everything. But we do have paid caregivers to help with that.
[00:07:33] Speaker C: Okay. There's still a lot to be done.
[00:07:36] Speaker A: Yeah, there's still a lot.
[00:07:37] Speaker C: Okay, so tell me a little bit more about how you divide the care with your siblings. You have a huge family.
[00:07:47] Speaker A: Yeah. Well, it's mostly me and two of my sisters. One who lives. She probably lives within 10 miles. Carrie will do the grocery shopping. She's a nurse, so she, when she comes in, she can see if he needs. If something's wrong, she can identify. Like she has more than once determined that, okay, he's got a fever or, you know, there's. He's not right. We need to call the doctor or whatever. My other sister, Ann is, lives 60 miles away, as I do with 70 miles, really. But Ann Will, you know, she works nights, so he will call her at night and she will talk him through things at night. She arranged, she buys medical equipment for him after talking to him. Me mostly, I do, I do the physical. Like, you know, one of his attendants can't come. I'll go and spend the day there, or I also help with his financial stuff. Okay. So it's kind of like we don't have to be there constantly, but we do.
It's getting to be a little bit more as he gets older.
[00:08:46] Speaker C: Yeah. So all these siblings in the family, and it sounds like three of you are doing most of the care and support for him. How did you split those tasks with your sister? How do you talk through that with them?
[00:09:04] Speaker A: Well, okay, so after my dad died, we did have, well, actually, after my mom died, we did a family meeting to talk about what are we going to do? Dad can't do this either. You know, after my mom died, my dad was also, you know, it was hard for him to walk and stuff like that. So we did convene a family meeting and, you know, talk about the fact that, you know, we have to figure out how to make sure that John is still taken care of. Like, my mom would still go down there. She was 82 years old, had congestive heart failure, and she would still go to his apartment at midnight.
[00:09:31] Speaker C: Wow.
[00:09:32] Speaker A: Crazy. So we had to talk about how are we going to do that? You know, we need to set boundaries, you know, who can do what, blah, blah, blah.
Out of that, it kind of came to the fact that me, Carrie and Ann had the most availability. My job allowed me to be more available. I can work remotely. Carrie and Ann, being nurses, it kind of naturally fell to them. One sister lives a plane flight away, so she helps, and she's really good. He calls her and she calms him down. I've seen her with him. She will hold his hand when she comes at Christmas time, she'll just hold his hand and calm him down. I'm like, how do you do that? Because I'm like, crazy and make, I ramp him up so I don't do that. And then, you know, my older sister and brother, they, they don't have the, they don't have the time to be running over and helping with him. They'll help when they can, but it doesn't happen very often. And then another sister has a bunch of kids and she's an hour away, too, so it's hard for her. But when she's in the area, she does come and visit and, you know, mostly it's visiting.
[00:10:30] Speaker C: Yeah, yeah.
[00:10:31] Speaker A: That's still helping.
[00:10:32] Speaker C: It is. It is. So in this family meeting, you all spoke about how much you could help, when and where you could help.
[00:10:41] Speaker A: Yeah. We even talked about, do we have to put him in a nursing home? And we, to a person said, no, that's not going to happen. So we as a family committed that we are not putting him in a nursing home. He's staying in his apartment, and we will make it happen. However, we need to make sure that he is continuing to be cared for. We'll make it happen.
[00:10:58] Speaker C: Wow. Tell me what it's like from the heart how is it having a brother who needs care that you wish he had a fulfilling outside experience at the beach and at all the things, how do you support him with that?
[00:11:19] Speaker A: That's really hard because it's hard. You can't. You and I, we can just say, hey, I'm going to the beach, throw some towels in the car and fill up a cooler and run to the beach and we're done. But with him, we either have to get medical transport or he does have a van. We have to make sure that there's two able bodied people to pick him up, get him in the van because the lift is broken and I haven't found anybody to fix it, and then get him to the park or the beach or whatever. But then you have to also remember he's in pain all the time, so moving him causes him more pain. So it's hard to see the brother that we used to play football with, and he could throw the football from his knees, probably 40 yards. He was the quarterback going both ways. And it's hard to see him in bed in pain when you just pick him up and move him from the wheelchair to the other, from the bed to the wheelchair and then move him from the wheelchair to the car. It's a lot of work and you just have to keep encouraging him to do it. We usually will take him to Kerry's house for family gatherings and, you know, then that way he gets to visit with everybody.
[00:12:18] Speaker C: Yeah.
[00:12:19] Speaker A: He doesn't have to go to five different places. Everybody's there.
[00:12:22] Speaker B: Today's episode is brought to you by.
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So what are some tips that you might give other family members or friends when they're visiting somebody who is restricted to their home, even restricted to their bed? What kind of activities have worked well for you?
[00:13:31] Speaker A: John loves music. John can, as a matter of fact, he wanted to make a passcode, like a musical chord. And I'm like, I can't remember that one. So he likes music. He loves movies. He loves to read. He's spiritual. He likes I can never say the name thich Nan Han. It's a, like, a tibetan monk person. He likes Richard Rohr, I want to say. So he, like. He listens to a lot of spirituality kind of things. So you find the thing that they like and you talk to them. You know, if they can't physically do something, find something they like to talk that they're interested in, talk to them about it. I always want to go and clean this apartment, and then I always am told, stop. Because, Mary, you're not here to clean. You're here to visit.
[00:14:18] Speaker C: Yeah.
[00:14:19] Speaker A: Right. And so what do you want to talk about? And just go. So whatever they're capable of doing, if your loved one is able to get outside and do things, take them outside and don't be afraid of them. You grew up with this person, so don't be afraid of this person. Do find out what it is they want to do, what they feel capable of doing, and go do it with them.
[00:14:38] Speaker C: Yeah. Do you experience guilt around how much time you're able to spend with your brother? Times that you're not able to bring him somewhere? How do you navigate that?
[00:14:51] Speaker A: I call my sister, even though I live at least an hour away. I feel like I should be visiting him. Not to do things for him, but to visit with him. I feel like I should visit him at least once a month. And all of a sudden, two months have gone by, and I'm like, oh, I haven't gone, so I'll call. You know, I do try to make. I have a reminder on my phone to call him every Friday. Doesn't always happen because he doesn't always answer. But I feel bad when I can't get there to see him, just to visit with him. So I will usually talk to Ann or Carrie and just, you know, and they'll be like, it's okay. And, you know, so we, the three of us, have a really good support group, if you will, because we understand what we're trying to do, and we have. We all have that same guilt. We're doing the best we can.
[00:15:34] Speaker C: Yeah.
[00:15:35] Speaker A: You know, like, part of me is like, I should just quit my job, and I should take. I should just move by John and I should take care of him full time. And then I'm like, I can't do that because then I won't be able to afford to take care of him. So I have jobs that allow me to be more flexible with where I work. So I can go and I can sit in his apartment with him when he's ready, and I can work and visit, so I just do the best I can. That's all you can eat. That's all you can do is just don't beat yourself up because I didn't get there this week. You know, call them instead.
[00:16:04] Speaker C: I like that. What are some tips that you would give our listeners who are in the same boat? There's probably a variety of medical conditions that all of us will face in our families, but many of them need heavy care.
How would you encourage and support them.
[00:16:23] Speaker A: First of all, if you don't already have a good understanding of their doctors and their medications and their care needs? Learn that, because when we first started taking care of my brother, he would get mad at us because I didn't even know how to rub his back correctly. But now he's just like, back rub. And, okay, I can do your back rub. I can rub your legs. I don't have a problem with that. I know how to do it. So forgive yourself as you're learning what your, what your sibling needs. But there's going to be a lot like, I didn't even know what his Medicare was, and so I had to do all that investigation. My sisters got, had to get medical power of attorney. He can, like I said, he can call. He can make his own phone calls. He can talk to his own doctors. But he recently was put in the hospital for some pain issues and stuff like that. And because he was in pain, he couldn't speak. And so we needed them to know that Carrie and Ann could be the designated decision makers. So you have to be power of attorney. You have to understand the finances. Like I said, we have paid caregivers. So look in your area for, for paid caregivers, because you can't be his sibling and his caregiver. If you become his caregiver, you're no longer a sibling. That is one thing that I learned from Ann. She told me, she's like, we need to remain sisters. We can't become his caregivers. We can manage his care, but if we become his caregivers, we're no longer his sisters. And that changes the entire dynamic. So don't feel guilty getting outside care for yourself, family member. It's, it helps maintain the fan, the familial connection.
[00:17:59] Speaker C: Yeah, that's really a good insight.
It's fantastic. I think that's gonna help some people who are struggling with caring for them personally versus hiring support to help care for them, too.
[00:18:13] Speaker A: Just like with a baby, you can't take care of your baby if you're exhausted, and if you're not feeling up to par, you have to. When you have a baby, you find a way to take time for yourself, even if it's just ten minutes. Same thing with John is we have to find. We have to keep that separate. You know, I'm not your permanent caregiver. I will do what I can to help you, but I also need to take care of me.
[00:18:34] Speaker C: Yeah.
[00:18:35] Speaker A: You know, so you can't feel guilty for taking care of yourself because you won't be able to take care of them.
[00:18:40] Speaker C: I've heard that over and over as I'm speaking with all the guests today about navigating these things. Take care of yourself.
[00:18:49] Speaker A: Yep.
[00:18:50] Speaker C: And start there. You can take care of someone else after you are centered, whole, and rested.
[00:18:57] Speaker A: Right, right.
[00:18:58] Speaker C: So your mom was taking care of your brother even at the end of her life, in her frailty.
[00:19:05] Speaker A: Mm hmm.
[00:19:06] Speaker C: That's really special.
[00:19:07] Speaker A: Yeah.
I think that that's one thing that I would have done differently, knowing what I know now. I would have been more forceful to stop my mom from helping. But neither one of my parents was the kind of person to ask for help. Ann and I took John to UCLA for. They have a cerebral palsy, orthopedic clinic, something. It was in 2017. It was right before my mom died, and we took him down. We spent the night in a hotel, and then we took him to the doctor apartment, brought him home. We put him back in his apartment, you know, visit with him. Okay. He's resting. We went to visit my parents, and my mom and dad were just so thankful that we did that for them. And that was when I realized that, okay, this is a lot of work. And I told mom, I'm like, you don't have to do this anymore. I said, ann and I will do this. We'll take care of John. Don't worry about it. I didn't realize what I was promising, but I made a promise to my mom, so. And my dad. But, yeah, that overnight, I'm like, holy cow, what does mom. I don't know how she does this at 82 and sick, but she did it because that's her son.
[00:20:12] Speaker C: Yeah. Well, my heart feels so heavy right now. I feel like I need to thank all of the siblings out there that are doing sometimes a thankless job. And I can't even imagine how proud your mom is of what you all have done.
[00:20:28] Speaker A: Oh, she's up there singing.
[00:20:30] Speaker C: Yeah. And proud.
[00:20:32] Speaker A: Yeah.
[00:20:33] Speaker C: She raised children that would sacrifice so much for a sibling.
[00:20:37] Speaker A: Well. And the nice thing is, now John doesn't, because a lot of times he's in pain. He doesn't always say thank you, but he did one time, a couple of times say to me and Ann, he said, I'm glad I was born into this family in the order I was born. And I was like, what does that mean? He goes, well, there's enough of you to take care of me. If I had been the youngest, you guys would already be gone and wouldn't and be too old to take care of me. But since I am one of the oldest, you guys can take care of me. And he goes, and mom and dad taught us all how to take care of each other. I was like, oh. So there's times when I feel like he doesn't appreciate us. I just remember that. And that helps.
[00:21:15] Speaker C: Yeah. Are there any final thoughts that you have for our listeners?
[00:21:19] Speaker A: I would just say, don't again, don't beat yourself up. Do the best you can. Understand that this is your sibling. This is the person you grew up with. It's the same person. Even if they're getting more disabled as they get older, which we will, we all have. We get. We all start getting worse as we get older. Well, they're gonna. It's exacerbated for them. It's your sibling. Remember that bottom line. That's your sibling. And don't feel guilty because you're taking care of yourself as well.
[00:21:47] Speaker C: Well, you know that I like to throw in some humor, comedy, and at least a smile, since some of these topics are just very difficult to navigate. So we're gonna play my game, you know, your old one.
[00:22:01] Speaker A: Okay.
[00:22:02] Speaker C: Okay. Tell me if you think this is true. You know you're old when you pee a little bit. When you jump on the trampoline.
Everyone out there, I know who you are.
[00:22:18] Speaker A: I'm gonna say, okay. I agree with that, except for the fact that I haven't jumped on a trampoline in probably ten years. Cause the last time I did, I got such a bad headache after doing it.
[00:22:28] Speaker C: Oh, I remember having moms when I had a trampoline come over and use mine in the backyard, and they would all giggle and laugh and sort of say, ooh, you know.
[00:22:39] Speaker A: And now you know what that was about.
[00:22:41] Speaker C: Now I know what that was about.
[00:22:43] Speaker A: Yeah.
[00:22:43] Speaker C: Okay. Do you have a joke for me?
[00:22:45] Speaker A: Yeah. Okay. You know you're old when the oldie station is playing the songs you loved in high school.
[00:22:52] Speaker C: Oh, no.
Oh, no.
I'm trying to think of a song I loved in high school that was the best what was your favorite song?
[00:23:02] Speaker A: I don't know. The one that I would always think of. It's an Eddie money song. Uh, I can't remember. It's an Eddie money song, but I. Off the top of my head, I can't think of the name of it.
[00:23:10] Speaker C: Yeah, I loved ice. Ice baby, that one. And I memorized a lot of the rap verses. Yeah, it was pretty bad.
Is that an oldie?
[00:23:21] Speaker A: Yeah.
[00:23:22] Speaker C: Is it?
[00:23:23] Speaker A: Yeah, it'll be. They'll play it on the local station. Well, k day. And they'll play it on the. Like the old.
[00:23:30] Speaker C: The throwback blast from the past.
[00:23:32] Speaker A: Yeah, I don't know what they call it on that station, but yeah, play that one. That's good.
[00:23:35] Speaker C: Well, thank you for coming, Mary. We appreciate your insights.
[00:23:38] Speaker A: Thanks for having me.
[00:23:40] Speaker C: And that brings us to the end of another episode. I hope you enjoyed the conversation as much as I did. Okay, so if you haven't already, make sure to hit that subscribe button so you never miss another episode. If you're loving what you hear. I would be incredibly grateful if you took just a moment to rate and review this show on your favorite podcast platform. It helps others discover us, and it's a great place to share your thoughts, suggestions, and ideas for future episodes. For even more exclusive content and detailed show notes, check out our website at 3564 dot. And that's spelled out 3564.com. As always, a huge, huge thank you for spending time with me today during this episode. I appreciate that you tuned in. I'm going to leave you the same way I do every episode. Remember, it's not too late, you're not too old, and you're definitely not dead. Okay, until next time, friends.
