Paula: [00:00:00] Welcome to Chatting with the Experts with Paula Okonneh, me the host, where I speak with women from Africa, from the Caribbean, and in the diaspora. They share with me my mission, which is to educate, empower, and encourage women globally. The women, my guests, are professionals and or successful entrepreneurs. And today’s episode is called How to Care for Family Members When Caregiving Becomes Leadership. My guest who will be joining me very shortly says that Caregiving for family members is more than a personal responsibility. She says it’s leadership, and she should know this because she was a dedicated caregiver to her husband for 25 years. So she’ll be drawing on decades of [00:01:00] experience as a family caregiver and talking about navigating challenges within the healthcare system while working and raising a family.
Today, she is an advocate for caregivers across Maryland and has served on the Maryland Commission on Caregiving since 2020. She’s currently a member of the National Family Caregiving Champion Collaborative through USAging. There’s so much I can say about her, but I’ll let her do that. So welcome to Chatting with the Experts, Theresa Robertson.
Theresa: Hello, I’m so thankful to be here, Paula. Thank you for the opportunity to share my story with your audience.
Paula: Absolutely. You know, you have said off camera that sharing your story has inspired employers, but also legislators and communities to support [00:02:00] caregiving because this needs to be done in a meaningful way. But what I particularly like is how you said, let’s see it as a leadership responsibility.
Theresa: Yeah.
Paula: Let’s talk a little bit about that, about shifting your perspective, because that’s basically what it is. Seeing caregiving as leadership rather than a chore.
Theresa: Yes, yes. And it’s not just a benefit to the caregiver to see themselves as leaders, but also to employers to see the leadership skills that caregivers bring to the table. Imagine you are the CEO of a corporation and caregiving is like a corporation. You have communication channels, you have data, you have stakeholders, you have responsibilities and decisions that you have to make, and you have to be really good at making decisions. You have systems that if you don’t already have them created, systems that you can create [00:03:00] and all of this. It just reminds me so much of being a business owner.
I mean, I’ve been in business for 18 years, and if you are not a business owner, you’ve never been a CEO, you’ve probably worked for a CEO. So you understand the role of that CEO and that person’s responsibility is to care for the entire organization to keep their eye on the market, trends inside the industry, to bring that information back and help make decisions that are in the best interest of their entire company. Well, as a caregiver especially, you know, the term I use is caregiver CEO, as a caregiver who is leaning into their leadership ability, you do the exact same thing. It allows you to take a bird’s eye view of your caregiving life.
You know, you see the doctors, you know their role in it. You see your loved one there. You know, all the data that’s in front of you, but who is the person that’s driving the shift? Who gets to make the most important decisions, especially if you have a loved one who [00:04:00] can’t participate in making those decisions? Well, that person is you and I want caregivers to feel empowered not to leave the responsibility solely up to doctors. We’ve heard so many horror stories of caregivers who trusted the doctor to make all the decisions. Well, doctors, have some really unique skills, and they have information that you don’t have about the medical field and treatment plans, but they don’t know your loved one.
They don’t know, you know, how they slept last night, what they ate last week, who they were around, their behavior at home. You have that information. They don’t know maybe their wishes or desires. You know that and the values that you have. And so seeing yourself as the CEO or the one in that leadership role, allows you to advocate from a different place where you don’t feel like you’re always, you know, uncertain and there’s things are happening to you. I remember that was one of the things I, that really irritated or I hated the most about being a caregiver [00:05:00] was that the uncertainty and when I decided that I was gonna start driving the ship, that doctors needed to, they in a sense worked for me.
If I had a question or a concern it deserved to be heard and I deserved to get an answer. Things started to change, and I remember mid time, after time when I would show up and say, no, I need to know what’s going on. They treated me differently. I felt like I got more respect. I felt heard because I demanded to be heard. Decisions had to be made, and how was I gonna make ’em unless I understood. I would go into doctor’s appointment visits with my husband, and I’m not leaving this room until I know the answer. I mean, I need to know what’s going on. And if I was in the emergency room and I wasn’t, you know, emergency rooms can be a horrible place for advocates because there’s so much going on there, so many people. A lot of pain, a lot of chaos can, you know, is going on there. It’s usually late at night. It doesn’t happen during the day when you have all the time in the world to go to the [00:06:00] emergency room. No, it’s gonna happen in the middle of the night when you have to spend 10, 12 hours and you’re exhausted and you’re in the emergency room.
Well, if you’re going with a plan, it can go a lot easier. I had made up my mind, I wasn’t gonna spend so much time in the emergency room before I started making phone calls. And I would call his doctor. The doctor would call, I would call hospital administration. Somebody was gonna help me move through this process because my husband, he needed care and I’m there to fight for him. And I know there were other people in the hospital also needing care. My responsibility was him. And I was very clear about that. And this is not in a aggressive manner being rude or disrespectful. It was being honest and assertive and operating as the person in charge.
Paula: I have a question though.
Theresa: That position over any other.
Paula: I love what you’re talking about. ’cause you said like if you are the CEO, you take responsibilities. So I’m wondering if there are, you can share with us some [00:07:00] strategies of communication, of boundaries that we could put in place when we look at ourselves as the CEO caregiver.
Theresa: Mm-hmm.
Paula: Are there any?
Theresa: Well, one of the strategies I had was I built really good relationships with his doctors. I shared with them what my concerns were about emergency rooms, about doctor’s visits, and so many doctor, you know, when a person is dealing with a chronic health issue, you’re gonna get a lot of doctors. They may not all be part of the same hospital system, right? You’re gonna start to see breakdown in communication between one hospital system and another. That’s where I step in because it’s my job to make sure that the right hand always knows what the left hand is doing. And there have been times, I promise you, where I told my doctor, you’re gonna have to be the one that’s in charge here. I know that behind the scenes, they have their own system as to who they decide who gonna be in charge.
But I’m only gonna take direction from one person. I can’t hear from everyone. So, [00:08:00] when I would hear from this person, I would ask them, did you talk to, I’m gonna use doctor’s names. Did you talk to Dr. Conger? No, we haven’t talked to Dr. Conger yet. Well, then you need to talk to Dr. Conger. You can tell me but no decision is gonna be made until I speak to Dr. Conger and he knows what’s going on. I made him responsible to get the information because he’s a doctor and he understands doctor speak, and I needed one person I could trust not 10,000 people to talk to and information get confused. So that was one thing I did.
I also… systems behind the scenes or computer systems where they shared information, I would check it regularly to make sure it was updated with the latest information, and if it wasn’t, I would add that information based on my conversations with doctors. Again, just trying to make sure the communication stayed where it needs to be, where everyone knew what was going on. Sometimes I would just call the doctor to make sure he was caught up to speed. I know it sounds like a [00:09:00] lot, but it is what was necessary. And when you talk about boundaries, okay. I think about my family. We all have families. We have people in our lives who may not help as much as we would like them to help, but they demand from you.
Paula: Mm-hmm.
Theresa: We know that’s just gonna happen. My husband was very beloved. Everyone loved him, and everyone felt they were the only person that deserved an update, when in fact, there was probably a list of maybe 50 people who wanted an update on my husband’s condition. So I had to come up with a system. That system involved using software where people could sign up to get notifications. If he went into the hospital, I would use it was called, I think it’s called Care. I can’t remember the name of it, but if I remember it, I’ll tell you later. But a CaringBridge. Yeah, CaringBridge. I think that’s what it was.
Paula: CaringBridge. Okay.
Theresa: They would sign up for that and if he ended up in the hospital, I would put a notice in CaringBridge and they would all get an email saying, Emmanuel’s in the hospital [00:10:00] and here’s the latest update, and if they kept their eye on their emails, I would keep the CaringBridge updated with the latest, and anybody who signed up will be notified.
Paula: That’s neat.
Theresa: Well, if you didn’t use CaringBridge, guess what? You can use any email management system. But, and once it was clear as how I was gonna communicate, it made it easier for me because I would spend hours on the phone calling one after another saying the same story over and over again.
Paula: Mm-hmm.
Theresa: That was exhausting.
Paula: Mm-hmm.
Theresa: Then I would create text threads that would include people, and then we get all these responses back and your phone is going off. And that also became an annoyance.
Paula: Oh yes.
Theresa: But I had a short list of those who I would communicate by text. Here’s something I did that was really kind of radical. I deputized my children because they are adults. My children are adults. Your children may not be, but I made sure they were all updated and then certain people were assigned to them where if they had questions they could call [00:11:00] my children. My job was to take care of my husband, so all I really had to do when he went into the hospital was notify my kids and send out a message through CaringBridge and everybody knew what was gonna happen from that point. They would either get an email update or they could call my kids if they wanna know what was going on. But I needed to turn my attention back to my husband. And what were the doctors trying to tell us? You know, you only have so much mental, emotional energy. You have to preserve and protect that, and you can’t get upset because other people demand something from you. That’s where you draw the boundary and create systems that work for you.
Paula: I love what you said, you know, setting up that system, like you said, use software or, I mean, because most people I think revert to what they used to, which is like text messaging and some WhatsApp if you have like family abroad or so on. But the software [00:12:00] using this CaringBridge, meant that everybody could be notified at the same time and all updates were all together, right?
Theresa: Yep.
Paula: It’s almost like comes in Slack.
Theresa: Yes like Slack and you could use Slack. So slack is free.
Paula: Mm-hmm.
Theresa: It’s an option. I think the answer is you need to find a system that works for you. And everybody’s not gonna be appreciative of that. I understand they may love your loved one. They want more notification. You give what you can. And you make sure as long as they have the information they need, then you can’t spend all your time on the phone as well. I mean, I wasn’t gonna do that. I remember in the beginning before technology was so advanced, I would be in phone booths. I used to carry coins with me ’cause again, it was 25 years ago. I used to carry pockets are full of coins and be in the telephone booth at the hospital, making one call after another, saying the same thing over and over again.
Paula: Oh my gosh.
Theresa: That was so frustrating.
Paula: I can’t just imagine. Yeah. I’m going back 25 years [00:13:00] when yes, it was phone booths, and you know, then the long distance calls would be more expensive.
Theresa: Mm-hmm.
Paula: And so you have to be slotting in those quarters even more rapidly. Wow.
Theresa: Yeah. Everybody wants their own update.
Paula: Everyone wants their own update. Yes. I could just imagine. But you mentioned something about using family members, like you said you had at that time, three sons who were grown up who are adults. And so tell us a way, how did you utilize them? You know, because I’m sure everybody doesn’t have the same way of caregiving. You know, like one son might have been squeamish, oh no, I don’t wanna talk anything about blood. Another one might have been like, you know what? I’m the one who’s gonna be the driver. Did you do things like that?
Theresa: Right? So you’re gonna have family members, whether it’s siblings or children, or whoever, you’re gonna have family members who can jump right in with you and get to work, and there are gonna be others who, for whatever reason, [00:14:00] are not going to show up and they may say they’re gonna show up and then they don’t.
Paula: Mm-hmm.
Theresa: Because maybe they don’t have the courage to say that they don’t have the stomach for it, or it’s too hard for them. My advice is not to spend a lot of time worrying about what they say they can or can’t do, but look at their behavior. If they’re not showing up, that means they, they just can’t do it. That doesn’t mean they don’t love that person too. They may love that person, but for whatever reason, they’re not showing up in the way that you feel you need them to.
Paula: Mm-hmm.
Theresa: Fine. Figure out what they can do and ask them to do that. And if you’re not sure, then ask them in what ways do they feel they want to contribute? Now, if you still don’t get a response and you leave them alone, because the truth is you don’t have the any time to spend trying to convince someone they should do something because you feel they should, you know, people make their own choices and they have to live with them. What I did was I would have meetings with my children and still do today we, I mean you can call them town hall meetings ’cause I like to go back to, you [00:15:00] know, business principles and business vocabulary. But in business we have town hall meetings where you bring everybody up to speed and cast the vision for the future. Well, we would do that with our kids and get ’em on a Zoom call and say, we wanna give you an update on dad’s condition. We want everyone to be informed as to what’s going on.
And so they grew up knowing that caring was part of their life and our lives, what we did. So getting them to help me is not hard. They’ve been helping me their whole life. I would suggest that if you are, even if you’re not caring right now, caring for someone, that if you have adult children, that you start having those conversations with them. Because now that my husband’s not here, we talk about my future, what it’s gonna be like if they have to care for me. What needs do I have today, now that I’m a widow.
Paula: Mm-hmm.
Theresa: It is important for them to know, because they don’t have that perspective. They didn’t grow up. I mean, they’ve never been a widow, so they don’t know unless I tell them. And I feel as a parent, it’s still my responsibility [00:16:00] to teach my children. And you can do the same thing with your siblings if you’re all carrying together, pick a date and time that works for everyone. And again, if you have someone who’s being resistant… date and time, then they can’t say, you decide to meet on this day when I wasn’t available. And then you pick the date and time, but get everyone on the call and have a conversation about this is what’s happening and what do you think we should do about it? And ask them to make commitments they can stick with, and hopefully that will work. If they can’t make a commitment, then that’s okay. Maybe they can be the person that prays for everyone else. Maybe they can be the person that just every now and then has an encouraging word for everyone. That’s all. They’re the one who plans the meeting so that everybody can come together, see if there’s a possibility that they can do anything. And again, if not you let ’em go. So I hope that… does that answer your question?
Paula: It does. That’s very important. Yeah. You know, siblings. Yeah. Because especially these days where [00:17:00] we are global citizens, people can be at all different parts of the world, different time zones, and it’s important to come together and, you know, fix a time that people can communicate. But as you pointed out, not everybody feels comfortable doing certain things. So having that conversation prior to the time of caregiving, I think is very important. But in the case where you’re already deep in it, shifting your perspective and knowing that, all right, yes, X.
Theresa: Can I share something?
Paula: Brother A or brother C or sister B doesn’t doesn’t seem to show up, ask why. I like that. I really do.
Theresa: Can I share a little bit more about that?
Paula: Sure. Please do.
Theresa: Because the truth is we always think we know what’s going through the minds of other people.
Paula: Yeah.
Theresa: And sometimes people aren’t clear themselves what’s going through their mind. They may not know themselves why they feel the way they do or why it’s so hard for them to get involved, but they [00:18:00] know that it’s hard.
Paula: Mm-hmm.
Theresa: Everybody doesn’t process information the same way.
Paula: Mm-hmm.
Theresa: And I have a son who is always so, he’s very sensitive. He tries to be tough, but I know that he’s really sensitive. And when something happens, like somebody’s in the hospital or someone passes away, it hurts him on a level that’s different for the rest of us and he holds it a little bit longer.
Paula: Mm-hmm.
Theresa: And so as his mom, I’m aware of that. He’s not gonna say, you know, this is really still bothering me. It’s been two years since my dad passed away, but it’s still really feels really fresh for me, and so, but again, because we don’t know what’s in the minds of other people, we have to give them grace. We have to give ourselves grace too and ask yourself, is it worth ruining this relationship or destroying this relationship because they’re not showing up in the way I want them to? I’d rather just let them be. Let them, you know, jump in when they feel ready. Now I can’t be [00:19:00] because they don’t know, because I’ve told them what my needs are, so that’s not gonna be a secret. Everybody’s gonna know what my needs are.
Paula: Mm-hmm.
Theresa: If they jump in and they help, fine. If they don’t I let ’em go. I leave them alone. I don’t make it mean something, then I’m not really sure it means.
Paula: Mm-hmm.
Theresa: Like, I don’t make it mean that they don’t care about me. They don’t care about my loved one. I don’t go to that level because it’s not necessary. I don’t have to, so I don’t.
Paula: I like that approach, but what I particularly like is the fact you have had that conversation before you need the help.
Theresa: Mm-hmm.
Paula: From them. So you know where everybody stands. At least as of now, because people change our circumstances and people’s lives change that make them have to adapt, but at least there’s that knowledge that some A, in your case you have some, so some A is going to be responsible for this. Some B feels that he’s capable of this and some C. Alright, we know where we are [00:20:00] and some C can do X, Y, z. I like that.
Theresa: Mm-hmm.
Paula: I like that. So, oh my word. And I say oh my word because time flies. I mean, I can’t believe we’ve been talking for about 20 minutes. Can you believe it?
Theresa: I get a little long-winded sometimes.
Paula: No, you don’t. I mean, we need to make the points you’re making relatable. And many times it’s through telling a story because people can relate to that, you know?
Theresa: Mm-hmm.
Paula: As opposed to just facts. Facts are harder to digest, but, you know, are there any things that we need to know about, you know, like, because we are talking about it from a leadership point of view about like resilience, looking at family members and their resilience level, I wanna say, and you know, finding ways to strengthen their resilience before the time comes for caregiving?
Theresa: That’s a question I’ve never been asked before, because I think it has to be, it is a personal, they have to want to get better in that area. They have to want to [00:21:00] get stronger. I don’t know if I’m answering the question correctly. When it comes to resilience, it’s such an internal process is what I’m trying to say. I am the way I am because I chose to live this way. I want to have the ability to bounce back and to recover when things get hard and to live above my circumstances. So I work really hard at managing my mindset around those things.
Paula: Mm-hmm.
Theresa: I’m aware that what I feel is a direct result of what I’m thinking. So I’m really careful about the things that I think about, what I allow to enter my brain and I meditate on. I can’t do that for someone else. But what you can do is you know, encourage people, give people an opportunity to serve. When we talk about asking, you know, we have a tagline, right? Lead with clarity, ask with confidence and care without losing yourself. Asking seems to be a really big issue for a lot of people. They don’t ask for what they need. They [00:22:00] expect a lot of people to know or they say, well, I asked them before and they didn’t do it, so I’m not asking them again. Asking is just simply that you open your mouth, you say what you need, but first you need to know what you need. So be clear about that and then ask and especially if they say to you, you know, let me know if there’s anything I can do.
Paula: Mm-hmm.
Theresa: In my survival kit, I give you a whole sheet of paper where you can put the name and phone number of anybody who says, please let me know if there’s anything I can do to help you. Why? Because you’re gonna have a need and I want you to be able to go down that list and call those people and ask them to help you. You can’t do this by yourself. We all need somebody. And I don’t think we were meant to do this alone. So…
Paula: mm-hmm.
Theresa: Be careful about isolating yourself and thinking thoughts that don’t serve you. And then there’s caring without losing yourself. Making sure that you put yourself on the agenda, on the to-do list.
Paula: Writing this [00:23:00] down. Caring without losing yourself.
Theresa: Yes. If you were the CEO of an organization and one of your employees was burned out, they’ve been working all night long, 24 hours a day, they hadn’t had a vacation all year long, you would insist that that person go on a vacation because they need to recharge and refresh so they can be of more use to you in the business?
Paula: Mm-hmm.
Theresa: Well, the same for a caregiver. You can’t burn the can at both ends and expect to show up and be your best. You have to take a respite and if that…
Paula: Yes, absolutely.
Theresa: You have to, it’s not well, if I find time though or maybe one day, no. It’s a necessity. As much as eating, sleeping, and drinking water is respite, taking a break away from caregiving so you remember what it feels like not to be on edge or on all the time. You know, you have to take time away to [00:24:00] remember who you are as a person, as a human being and reconnect with others. So. I see you going like this.
Paula: Yep, yep, yep. Because I think that’s a big, a major part of caregiving caregivers burnout. Not understanding that they too have limitations and that they need to care without losing themselves. They need to know when it’s time to say, you know what? I need a break. I need to step away from this.
Theresa: Mm-hmm.
Paula: Especially when it’s a family member that everyone loves. Like you said your husband was beloved by the family.
Theresa: Mm-hmm.
Paula: But knowing that you can’t do it all by yourself.
Theresa: Yep.
Paula: It’s necessary.
Theresa: And I used to think that when I hit that wall, I’ll know when it’s time to take a break. ’cause I’ll get so tired, I won’t have a choice. But I realized that I can actually push myself beyond the point of being healthy.
Paula: Mm-hmm.
Theresa: I can go a lot further on fumes that I thought I could.
Paula: Mm-hmm.
Theresa: And that’s not good. So taking small respites along the way, whether that’s one Saturday a month or two hours [00:25:00] a day. Whatever works best for you. Being consistent is better than waiting until you’re completely burned out, and then you have to escape because now you’re sick. I’ve known caregivers to die before the person they were caring for because they didn’t take care of themselves. They made sure their loved one took their medication, their loved one, got rest and food, and saw the doctor, but they didn’t take care of themselves at all. I didn’t want that to be my story and I don’t want that to be your story either.
Paula: Mm-hmm.
Theresa: So let’s figure out together how you can get that respite in your schedule. And if you need help with that, you can reach out to me.
Paula: Absolutely. Well, you talked about the survival kit. Is that something that you can share with the audience who have joined us today?
Theresa: Mm-hmm. Yeah. I mean, you can go to my website. I actually think it’s a caregiverceokit.com. caregiverceokit.com, or you can go to my website at the thecaregiverceo.com and download a free caregiver survival kit. [00:26:00] It lists the seven systems that I believe every family caregiver should focus on in building. And you know, ’cause as a business owner you have what’s called a business plan. So this would be your caregiver plan. It focuses on financial systems, medication, health, appointment systems, medical record systems, respite systems, and a communication system. And so, those are the things I think family caregivers should focus on. Just ask yourself some questions around those areas and choose the one that makes the most sense to you to work on first. I recommend working on the respite system first, ’cause that’s the most difficult one.
Paula: Respite.
Theresa: Once you learn how to take care of yourself, you’ll have the bandwidth to be able to make decisions in those other areas.
Paula: I love that. I love that. We’ll drop those seven points in the chat for those who are here with us live and then we can put in our show notes. ’cause I think it’s important to know these seven steps to keep healthy to survive. I like the, and I actually like [00:27:00] the…
Theresa: Survive and Thrive.
Paula: Survive and thrive. Yes. Yes. Yes. All right, so as we are wrapping this up, for those who haven’t been able to join us today and who are watching the replay, how can people get in touch with you? I know you mentioned thecaregiverceo.com.
Theresa: Correct.
Paula: What else? How else?
Theresa: Okay. Yeah, the [email protected]. That’s the email address or thecaregiverceo.com website or anywhere online when you look for the Caregiver CEO, you’ll probably find me. I’m happy to connect. We have a Facebook group, but more importantly, you know, reach out to your local family caregiver support office. They have resources available. If you don’t ever talk to me, reach out to them. Ask them to for an options assessment so they can tell you all the resources that are available to you as a family caregiver. If you follow me online I have other items that I can give you, especially for those in the state of Maryland. I have a ton of resources available [00:28:00] for Maryland caregivers and I’m happy to answer any questions that family caregivers have. I’m not alone. I have others who I’ve partnered with who also serve caregivers, and you’ll find all the support you will need.
Paula: Okay, awesome. Now , this is a global show. So for those of you in Maryland, phew! You are able to connect with a phenomenal woman who can share resources with you. But then, you know, for those of you who are global, I know that there are other resources which we will put in our show notes as well, and I wanna thank you, Theresa, for joining me on Chatting with the Expert s TV show and podcast. But for those of you who have listened to this and have enjoyed it, I’ll ask you if you would like to be a guest on this show, please reach out to me either on my web website, which is chattingwiththeexperts.com.
I’m also on LinkedIn as Paula Okonneh. I am on IG, Instagram, my handle base at [00:29:00] chat_experts_podcast. I’m also on Facebook as well, and I say that because I wasn’t on Facebook for many years, but I am. And last but not least, please like and subscribe to us on our YouTube channel, which is Chatting with the Experts.
Theresa, thank you again for being a guest. And now we will open up the floor to those who joined us and are in the audience who I know have more questions for you about this topic, that is a much needed topic. Family caregiving is something that is not, if it’s when it’s like technology, it’s never if, it’s when, even if it’s not for a family member, could be for us. Thank you.