Latest / Chatting with The Experts with Paula Okonneh / How To Care For Family Members

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How To Care For Family Members · Chatting with The Experts with Paula Okonneh

0:03
Welcome to Chatting with the Experts with Paula Okonneh, me the host, where
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I speak with women from Africa, from the Caribbean, and in the diaspora.
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They share with me my mission, which is to educate, empower,
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and encourage women globally.
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The women, my guests, are professionals and or successful entrepreneurs.
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And today's episode is called How to Care for Family Members When
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Caregiving Becomes Leadership.
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My guest who will be joining me very shortly says that Caregiving
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for family members is more than a personal responsibility.
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She says it's leadership, and she should know this because she was a dedicated
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caregiver to her husband for 25 years.
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So she'll be drawing on decades of experience as a family caregiver and
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talking about navigating challenges within the healthcare system while
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working and raising a family.
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Today, she is an advocate for caregivers across Maryland and has
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served on the Maryland Commission on Caregiving since 2020.
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She's currently a member of the National Family Caregiving Champion
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Collaborative through USAging.
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There's so much I can say about her, but I'll let her do that.
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So welcome to Chatting with the Experts, Theresa Robertson.
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Hello, I'm so thankful to be here, Paula.
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Thank you for the opportunity to share my story with your audience.
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Absolutely.
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You know, you have said off camera that sharing your story has inspired employers,
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but also legislators and communities to support caregiving because this
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needs to be done in a meaningful way.
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But what I particularly like is how you said, let's see it
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as a leadership responsibility.
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Yeah.
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Let's talk a little bit about that, about shifting your perspective,
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because that's basically what it is.
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Seeing caregiving as leadership rather than a chore.
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Yes, yes.
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And it's not just a benefit to the caregiver to see themselves
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as leaders, but also to employers to see the leadership skills that
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caregivers bring to the table.
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Imagine you are the CEO of a corporation and caregiving is like a corporation.
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You have communication channels, you have data, you have stakeholders, you
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have responsibilities and decisions that you have to make, and you have
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to be really good at making decisions.
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You have systems that if you don't already have them created, systems
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that you can create and all of this.
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It just reminds me so much of being a business owner.
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I mean, I've been in business for 18 years, and if you are not a business
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owner, you've never been a CEO, you've probably worked for a CEO.
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So you understand the role of that CEO and that person's responsibility is to
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care for the entire organization to keep their eye on the market, trends inside
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the industry, to bring that information back and help make decisions that are in
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the best interest of their entire company.
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Well, as a caregiver especially, you know, the term I use is caregiver
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CEO, as a caregiver who is leaning into their leadership ability,
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you do the exact same thing.
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It allows you to take a bird's eye view of your caregiving life.
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You know, you see the doctors, you know their role in it.
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You see your loved one there.
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You know, all the data that's in front of you, but who is the
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person that's driving the shift?
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Who gets to make the most important decisions, especially if you have
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a loved one who can't participate in making those decisions?
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Well, that person is you and I want caregivers to feel empowered not to leave
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the responsibility solely up to doctors.
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We've heard so many horror stories of caregivers who trusted the
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doctor to make all the decisions.
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Well, doctors, have some really unique skills, and they have information
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that you don't have about the medical field and treatment plans,
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but they don't know your loved one.
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They don't know, you know, how they slept last night, what they ate last week, who
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they were around, their behavior at home.
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You have that information.
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They don't know maybe their wishes or desires.
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You know that and the values that you have.
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And so seeing yourself as the CEO or the one in that leadership role,
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allows you to advocate from a different place where you don't feel like
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you're always, you know, uncertain and there's things are happening to you.
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I remember that was one of the things I, that really irritated or I hated the
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most about being a caregiver was that the uncertainty and when I decided that I was
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gonna start driving the ship, that doctors needed to, they in a sense worked for me.
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If I had a question or a concern it deserved to be heard and
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I deserved to get an answer.
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Things started to change, and I remember mid time, after time
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when I would show up and say, no, I need to know what's going on.
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They treated me differently.
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I felt like I got more respect.
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I felt heard because I demanded to be heard.
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Decisions had to be made, and how was I gonna make 'em unless I understood.
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I would go into doctor's appointment visits with my husband, and I'm not
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leaving this room until I know the answer.
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I mean, I need to know what's going on.
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And if I was in the emergency room and I wasn't, you know, emergency
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rooms can be a horrible place for advocates because there's so much
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going on there, so many people.
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A lot of pain, a lot of chaos can, you know, is going on there.
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It's usually late at night.
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It doesn't happen during the day when you have all the time in the
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world to go to the emergency room.
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No, it's gonna happen in the middle of the night when you have to spend
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10, 12 hours and you're exhausted and you're in the emergency room.
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Well, if you're going with a plan, it can go a lot easier.
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I had made up my mind, I wasn't gonna spend so much time in the emergency room
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before I started making phone calls.
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And I would call his doctor.
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The doctor would call, I would call hospital administration.
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Somebody was gonna help me move through this process because my husband, he needed
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care and I'm there to fight for him.
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And I know there were other people in the hospital also needing care.
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My responsibility was him.
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And I was very clear about that.
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And this is not in a aggressive manner being rude or disrespectful.
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It was being honest and assertive and operating as the person in charge.
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I have a question though.
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That position over any other.
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I love what you're talking about.
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'cause you said like if you are the CEO, you take responsibilities.
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So I'm wondering if there are, you can share with us some strategies
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of communication, of boundaries that we could put in place when we look
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at ourselves as the CEO caregiver.
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Mm-hmm.
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Are there any?
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Well, one of the strategies I had was I built really good
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relationships with his doctors.
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I shared with them what my concerns were about emergency rooms, about doctor's
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visits, and so many doctor, you know, when a person is dealing with a chronic health
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issue, you're gonna get a lot of doctors.
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They may not all be part of the same hospital system, right?
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You're gonna start to see breakdown in communication between one
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hospital system and another.
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That's where I step in because it's my job to make sure that the right hand
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always knows what the left hand is doing.
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And there have been times, I promise you, where I told my doctor, you're gonna
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have to be the one that's in charge here.
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I know that behind the scenes, they have their own system as to who
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they decide who gonna be in charge.
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But I'm only gonna take direction from one person.
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I can't hear from everyone.
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So, when I would hear from this person, I would ask them, did you
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talk to, I'm gonna use doctor's names.
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Did you talk to Dr. Conger?
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No, we haven't talked to Dr. Conger yet.
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Well, then you need to talk to Dr. Conger.
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You can tell me but no decision is gonna be made until I speak to Dr.
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Conger and he knows what's going on.
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I made him responsible to get the information because he's a doctor and he
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understands doctor speak, and I needed one person I could trust not 10,000 people
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to talk to and information get confused.
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So that was one thing I did.
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I also...
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systems behind the scenes or computer systems where they shared information,
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I would check it regularly to make sure it was updated with the latest
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information, and if it wasn't, I would add that information based
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on my conversations with doctors.
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Again, just trying to make sure the communication stayed where it needs to
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be, where everyone knew what was going on.
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Sometimes I would just call the doctor to make sure he was caught up to speed.
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I know it sounds like a lot, but it is what was necessary.
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And when you talk about boundaries, okay.
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I think about my family.
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We all have families.
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We have people in our lives who may not help as much as we would like them
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to help, but they demand from you.
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Mm-hmm.
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We know that's just gonna happen.
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My husband was very beloved.
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Everyone loved him, and everyone felt they were the only person that deserved an
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update, when in fact, there was probably a list of maybe 50 people who wanted
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an update on my husband's condition.
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So I had to come up with a system.
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That system involved using software where people could sign up to get notifications.
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If he went into the hospital, I would use it was called, I think it's called Care.
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I can't remember the name of it, but if I remember it, I'll tell you later.
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But a CaringBridge.
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Yeah, CaringBridge.
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I think that's what it was.
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CaringBridge.
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Okay.
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They would sign up for that and if he ended up in the hospital, I would put
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a notice in CaringBridge and they would all get an email saying, Emmanuel's
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in the hospital and here's the latest update, and if they kept their eye
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on their emails, I would keep the CaringBridge updated with the latest, and
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anybody who signed up will be notified.
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That's neat.
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Well, if you didn't use CaringBridge, guess what?
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You can use any email management system.
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But, and once it was clear as how I was gonna communicate, it made it easier for
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me because I would spend hours on the phone calling one after another saying
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the same story over and over again.
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Mm-hmm.
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That was exhausting.
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Mm-hmm.
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Then I would create text threads that would include people, and
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then we get all these responses back and your phone is going off.
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And that also became an annoyance.
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Oh yes.
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But I had a short list of those who I would communicate by text.
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Here's something I did that was really kind of radical.
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I deputized my children because they are adults.
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My children are adults.
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Your children may not be, but I made sure they were all updated and then certain
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people were assigned to them where if they had questions they could call my children.
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My job was to take care of my husband, so all I really had to do when he
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went into the hospital was notify my kids and send out a message through
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CaringBridge and everybody knew what was gonna happen from that point.
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They would either get an email update or they could call my kids if
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they wanna know what was going on.
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But I needed to turn my attention back to my husband.
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And what were the doctors trying to tell us?
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You know, you only have so much mental, emotional energy.
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You have to preserve and protect that, and you can't get upset because other
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people demand something from you.
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That's where you draw the boundary and create systems that work for you.
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I love what you said, you know, setting up that system, like you said, use software
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or, I mean, because most people I think revert to what they used to, which is
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like text messaging and some WhatsApp if you have like family abroad or so on.
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But the software using this CaringBridge, meant that everybody
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could be notified at the same time and all updates were all together, right?
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Yep.
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It's almost like comes in Slack.
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Yes like Slack and you could use Slack.
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So slack is free.
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Mm-hmm.
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It's an option.
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I think the answer is you need to find a system that works for you.
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And everybody's not gonna be appreciative of that.
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I understand they may love your loved one.
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They want more notification.
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You give what you can.
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And you make sure as long as they have the information they need, then you can't
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spend all your time on the phone as well.
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I mean, I wasn't gonna do that.
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I remember in the beginning before technology was so advanced,
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I would be in phone booths.
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I used to carry coins with me 'cause again, it was 25 years ago.
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I used to carry pockets are full of coins and be in the telephone booth at the
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hospital, making one call after another, saying the same thing over and over again.
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Oh my gosh.
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That was so frustrating.
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I can't just imagine.
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Yeah.
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I'm going back 25 years when yes, it was phone booths, and you know, then the long
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distance calls would be more expensive.
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Mm-hmm.
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And so you have to be slotting in those quarters even more rapidly.
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Wow.
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Yeah.
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Everybody wants their own update.
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Everyone wants their own update.
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Yes.
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I could just imagine.
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But you mentioned something about using family members, like you said
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you had at that time, three sons who were grown up who are adults.
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And so tell us a way, how did you utilize them?
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You know, because I'm sure everybody doesn't have the same way of caregiving.
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You know, like one son might have been squeamish, oh no, I don't
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wanna talk anything about blood.
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Another one might have been like, you know what?
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I'm the one who's gonna be the driver.
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Did you do things like that?
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Right?
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So you're gonna have family members, whether it's siblings or children, or
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whoever, you're gonna have family members who can jump right in with you and get
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to work, and there are gonna be others who, for whatever reason, are not going
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to show up and they may say they're gonna show up and then they don't.
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Mm-hmm.
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Because maybe they don't have the courage to say that they don't have the stomach
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for it, or it's too hard for them.
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My advice is not to spend a lot of time worrying about what they say they can
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or can't do, but look at their behavior.
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If they're not showing up, that means they, they just can't do it.
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That doesn't mean they don't love that person too.
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They may love that person, but for whatever reason, they're not showing up
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in the way that you feel you need them to.
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Mm-hmm.
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Fine.
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Figure out what they can do and ask them to do that.
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And if you're not sure, then ask them in what ways do they
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feel they want to contribute?
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Now, if you still don't get a response and you leave them alone, because the
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truth is you don't have the any time to spend trying to convince someone they
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should do something because you feel they should, you know, people make their own
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choices and they have to live with them.
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What I did was I would have meetings with my children and still do
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today we, I mean you can call them town hall meetings 'cause I like
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to go back to, you know, business principles and business vocabulary.
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But in business we have town hall meetings where you bring everybody up to speed
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and cast the vision for the future.
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Well, we would do that with our kids and get 'em on a Zoom call and say, we wanna
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give you an update on dad's condition.
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We want everyone to be informed as to what's going on.
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And so they grew up knowing that caring was part of their
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life and our lives, what we did.
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So getting them to help me is not hard.
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They've been helping me their whole life.
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I would suggest that if you are, even if you're not caring right
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now, caring for someone, that if you have adult children, that you start
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having those conversations with them.
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Because now that my husband's not here, we talk about my future, what it's gonna
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be like if they have to care for me.
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What needs do I have today, now that I'm a widow.
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Mm-hmm.
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It is important for them to know, because they don't have that perspective.
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They didn't grow up.
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I mean, they've never been a widow, so they don't know unless I tell them.
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And I feel as a parent, it's still my responsibility to teach my children.
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And you can do the same thing with your siblings if you're all
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carrying together, pick a date and time that works for everyone.
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And again, if you have someone who's being resistant...
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date and time, then they can't say, you decide to meet on this
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day when I wasn't available.
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And then you pick the date and time, but get everyone on the call
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and have a conversation about this is what's happening and what do
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you think we should do about it?
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And ask them to make commitments they can stick with, and hopefully that will work.
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If they can't make a commitment, then that's okay.
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Maybe they can be the person that prays for everyone else.
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Maybe they can be the person that just every now and then has an
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encouraging word for everyone.
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That's all.
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They're the one who plans the meeting so that everybody can
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come together, see if there's a possibility that they can do anything.
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And again, if not you let 'em go.
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So I hope that... does that answer your question?
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It does.
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That's very important.
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Yeah.
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You know, siblings.
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Yeah.
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Because especially these days where we are global citizens, people can be
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at all different parts of the world, different time zones, and it's important
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to come together and, you know, fix a time that people can communicate.
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But as you pointed out, not everybody feels comfortable doing certain things.
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So having that conversation prior to the time of caregiving,
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I think is very important.
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But in the case where you're already deep in it, shifting your perspective
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and knowing that, all right, yes, X.
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Can I share something?
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Brother A or brother C or sister B doesn't doesn't seem to show up, ask why.
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I like that.
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I really do.
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Can I share a little bit more about that?
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Sure.
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Please do.
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Because the truth is we always think we know what's going
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through the minds of other people.
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Yeah.
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And sometimes people aren't clear themselves what's
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going through their mind.
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They may not know themselves why they feel the way they do or why it's
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so hard for them to get involved, but they know that it's hard.
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Mm-hmm.
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Everybody doesn't process information the same way.
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Mm-hmm.
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And I have a son who is always so, he's very sensitive.
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He tries to be tough, but I know that he's really sensitive.
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And when something happens, like somebody's in the hospital or someone
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passes away, it hurts him on a level that's different for the rest of us
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and he holds it a little bit longer.
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Mm-hmm.
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And so as his mom, I'm aware of that.
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He's not gonna say, you know, this is really still bothering me.
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It's been two years since my dad passed away, but it's still really feels really
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fresh for me, and so, but again, because we don't know what's in the minds of
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other people, we have to give them grace.
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We have to give ourselves grace too and ask yourself, is it worth ruining
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this relationship or destroying this relationship because they're not
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showing up in the way I want them to?
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I'd rather just let them be.
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Let them, you know, jump in when they feel ready.
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Now I can't be because they don't know, because I've told them what my needs
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are, so that's not gonna be a secret.
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Everybody's gonna know what my needs are.
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Mm-hmm.
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If they jump in and they help, fine.
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If they don't I let 'em go.
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I leave them alone.
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I don't make it mean something, then I'm not really sure it means.
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Mm-hmm.
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Like, I don't make it mean that they don't care about me.
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They don't care about my loved one.
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I don't go to that level because it's not necessary.
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I don't have to, so I don't.
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I like that approach, but what I particularly like is the fact
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you have had that conversation before you need the help.
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Mm-hmm.
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From them.
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So you know where everybody stands.
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At least as of now, because people change our circumstances and people's lives
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change that make them have to adapt, but at least there's that knowledge that some
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A, in your case you have some, so some A is going to be responsible for this.
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Some B feels that he's capable of this and some C. Alright, we know where we are
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and some C can do X, Y, z. I like that.
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Mm-hmm.
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I like that.
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So, oh my word.
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And I say oh my word because time flies.
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I mean, I can't believe we've been talking for about 20 minutes.
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Can you believe it?
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I get a little long-winded sometimes.
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No, you don't.
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I mean, we need to make the points you're making relatable.
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And many times it's through telling a story because people
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can relate to that, you know?
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Mm-hmm.
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As opposed to just facts.
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Facts are harder to digest, but, you know, are there any things that we need to know
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about, you know, like, because we are talking about it from a leadership point
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of view about like resilience, looking at family members and their resilience
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level, I wanna say, and you know, finding ways to strengthen their resilience
20:47
before the time comes for caregiving?
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That's a question I've never been asked before, because I think it has
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to be, it is a personal, they have to want to get better in that area.
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They have to want to get stronger.
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I don't know if I'm answering the question correctly.
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When it comes to resilience, it's such an internal process
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is what I'm trying to say.
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I am the way I am because I chose to live this way.
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I want to have the ability to bounce back and to recover when things get
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hard and to live above my circumstances.
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So I work really hard at managing my mindset around those things.
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Mm-hmm.
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I'm aware that what I feel is a direct result of what I'm thinking.
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So I'm really careful about the things that I think about, what I allow to
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enter my brain and I meditate on.
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I can't do that for someone else.
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But what you can do is you know, encourage people, give
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people an opportunity to serve.
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When we talk about asking, you know, we have a tagline, right?
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Lead with clarity, ask with confidence and care without losing yourself.
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Asking seems to be a really big issue for a lot of people.
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They don't ask for what they need.
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They expect a lot of people to know or they say, well, I asked
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them before and they didn't do it, so I'm not asking them again.
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Asking is just simply that you open your mouth, you say what you need, but
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first you need to know what you need.
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So be clear about that and then ask and especially if they say to you, you know,
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let me know if there's anything I can do.
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Mm-hmm.
22:21
In my survival kit, I give you a whole sheet of paper where you can put the
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name and phone number of anybody who says, please let me know if there's
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anything I can do to help you.
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Why?
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Because you're gonna have a need and I want you to be able to go
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down that list and call those people and ask them to help you.
22:39
You can't do this by yourself.
22:40
We all need somebody.
22:43
And I don't think we were meant to do this alone.
22:45
So...
22:45
mm-hmm.
22:45
Be careful about isolating yourself and thinking thoughts that don't serve you.
22:51
And then there's caring without losing yourself.
22:54
Making sure that you put yourself on the agenda, on the to-do list.
22:59
Writing this down.
23:00
Caring without losing yourself.
23:02
Yes.
23:03
If you were the CEO of an organization and one of your employees was burned out,
23:07
they've been working all night long, 24 hours a day, they hadn't had a vacation
23:12
all year long, you would insist that that person go on a vacation because they
23:17
need to recharge and refresh so they can
23:20
be
23:20
of more use to you in the business?
23:23
Mm-hmm.
23:23
Well, the same for a caregiver.
23:25
You can't burn the can at both ends and expect to show up and be your best.
23:31
You have to take a respite and if that...
23:35
Yes, absolutely.
23:39
You have to, it's not well, if I find time though or maybe one day, no.
23:44
It's a necessity.
23:46
As much as eating, sleeping, and drinking water is respite, taking a break away from
23:51
caregiving so you remember what it feels like not to be on edge or on all the time.
23:57
You know, you have to take time away to remember who you are as a person, as a
24:02
human being and reconnect with others.
24:04
So.
24:06
I see you going like this.
24:07
Yep, yep, yep.
24:08
Because I think that's a big, a major part of caregiving caregivers burnout.
24:14
Not understanding that they too have limitations and that they need
24:18
to care without losing themselves.
24:19
They need to know when it's time to say, you know what?
24:22
I need a break.
24:23
I need to step away from this.
24:24
Mm-hmm.
24:24
Especially when it's a family member that everyone loves.
24:27
Like you said your husband was beloved by the family.
24:30
Mm-hmm.
24:30
But knowing that you can't do it all by yourself.
24:33
Yep.
24:34
It's necessary.
24:34
And I used to think that when I hit that wall, I'll know
24:37
when it's time to take a break.
24:38
'cause I'll get so tired, I won't have a choice.
24:41
But I realized that I can actually push myself beyond the point of being healthy.
24:47
Mm-hmm.
24:47
I can go a lot further on fumes that I thought I could.
24:50
Mm-hmm.
24:50
And that's not good.
24:53
So taking small respites along the way, whether that's one Saturday
24:57
a month or two hours a day.
25:00
Whatever works best for you.
25:02
Being consistent is better than waiting until you're completely
25:05
burned out, and then you have to escape because now you're sick.
25:10
I've known caregivers to die before the person they were caring for because
25:14
they didn't take care of themselves.
25:16
They made sure their loved one took their medication, their loved one, got rest
25:20
and food, and saw the doctor, but they didn't take care of themselves at all.
25:25
I didn't want that to be my story and I don't want that to be your story either.
25:29
Mm-hmm.
25:29
So let's figure out together how you can get that respite in your schedule.
25:34
And if you need help with that, you can reach out to me.
25:36
Absolutely.
25:37
Well, you talked about the survival kit.
25:40
Is that something that you can share with the audience who have joined us today?
25:45
Mm-hmm.
25:45
Yeah.
25:46
I mean, you can go to my website.
25:47
I actually think it's a caregiverceokit.com.
25:50
caregiverceokit.com, or you can go to my website at the thecaregiverceo.com and
25:57
download a free caregiver survival kit.
25:59
It lists the seven systems that I believe every family caregiver
26:04
should focus on in building.
26:06
And you know, 'cause as a business owner you have what's called a business plan.
26:10
So this would be your caregiver plan.
26:12
It focuses on financial systems, medication, health, appointment
26:17
systems, medical record systems, respite systems, and a communication system.
26:23
And so, those are the things I think family caregivers should focus on.
26:27
Just ask yourself some questions around those areas and choose the one that makes
26:32
the most sense to you to work on first.
26:34
I recommend working on the respite system first, 'cause
26:37
that's the most difficult one.
26:39
Respite.
26:39
Once you learn how to take care of yourself, you'll have the
26:42
bandwidth to be able to make decisions in those other areas.
26:45
I love that.
26:46
I love that.
26:47
We'll drop those seven points in the chat for those who are here with us live
26:51
and then we can put in our show notes.
26:53
'cause I think it's important to know these seven steps
26:56
to keep healthy to survive.
26:58
I like the, and I actually like the...
27:00
Survive and Thrive.
27:02
Survive and thrive.
27:03
Yes.
27:04
Yes.
27:05
Yes.
27:06
All right, so as we are wrapping this up, for those who haven't been able to join
27:10
us today and who are watching the replay, how can people get in touch with you?
27:15
I know you mentioned thecaregiverceo.com.
27:20
Correct.
27:20
What else?
27:21
How else?
27:22
Okay.
27:23
Yeah, the info@thecaregiverceo.com.
27:26
That's the email address or thecaregiverceo.com website or
27:29
anywhere online when you look for the Caregiver CEO, you'll probably find me.
27:34
I'm happy to connect.
27:35
We have a Facebook group, but more importantly, you know, reach out to your
27:38
local family caregiver support office.
27:41
They have resources available.
27:42
If you don't ever talk to me, reach out to them.
27:45
Ask them to for an options assessment so they can tell you all
27:49
the resources that are available to you as a family caregiver.
27:52
If you follow me online I have other items that I can give you, especially
27:56
for those in the state of Maryland.
27:58
I have a ton of resources available for Maryland caregivers and I'm
28:03
happy to answer any questions that family caregivers have.
28:06
I'm not alone.
28:06
I have others who I've partnered with who also serve caregivers, and you'll
28:11
find all the support you will need.
28:13
Okay, awesome.
28:15
Now , this is a global show.
28:16
So for those of you in Maryland, phew!
28:19
You are able to connect with a phenomenal woman who can share resources with you.
28:24
But then, you know, for those of you who are global, I know that there are
28:28
other resources which we will put in our show notes as well, and I wanna thank
28:34
you, Theresa, for joining me on Chatting with the Expert s TV show and podcast.
28:39
But for those of you who have listened to this and have enjoyed it, I'll
28:43
ask you if you would like to be a guest on this show, please reach
28:47
out to me either on my web website, which is chattingwiththeexperts.com.
28:52
I'm also on LinkedIn as Paula Okonneh.
28:55
I am on IG, Instagram, my handle base at chat_experts_podcast.
29:02
I'm also on Facebook as well, and I say that because I wasn't on
29:06
Facebook for many years, but I am.
29:08
And last but not least, please like and subscribe to us on our YouTube channel,
29:14
which is Chatting with the Experts.
29:17
Theresa, thank you again for being a guest.
29:20
And now we will open up the floor to those who joined us and are in the audience who
29:26
I know have more questions for you about this topic, that is a much needed topic.
29:34
Family caregiving is something that is not, if it's when it's like technology,
29:40
it's never if, it's when, even if it's not for a family member, could be for us.
29:47
Thank you.