Episode Transcript
[00:00:01] Speaker A: From Riverside Health System, this is the Healthy you podcast, where we talk about a range of health related topics focused on improving your physical and mental health. We chat with our providers, team members, patients, and caregivers to learn more about how to maintain a healthy lifestyle and improve overall physical and mental health. So let's dive in to learn more about becoming a healthier you.
[00:00:26] Speaker B: This is the Healthy you podcast, 29th episode, and I am going to be talking with Maddie McKnight, a caregiver for a sister with dementia. On this episode, we will explore navigating the caregiver's path for a sister with dementia.
All right, I am really excited to have in the healthy you studio with me today, Maddie McKnight. Maddie is a caregiver for sisters with dementia. On this episode, we're going to be talking about compassion and memory, navigating the caregiver's path for a sister with dementia. Hi, Maddie.
[00:01:03] Speaker C: Good morning. How are you?
[00:01:05] Speaker B: Thank you so much for joining us today.
Tell me a little bit, Maddie, about yourself and a little bit about your sister, if you're okay with that.
[00:01:16] Speaker C: To start off. Okay.
My name's Maddie McKnight, and I moved to Hampton in 2015.
[00:01:24] Speaker D: Okay.
[00:01:25] Speaker C: Drove my real estate lady crazy.
I wanted to live by the water because I was close to retirement. So she told me to live at Fort Monroe for a year to figure out if I wanted to live by the water. Well, guess what? I don't want to live by the water. So I bought a nice, cute little house on Mary Peak Boulevard.
And since I was into aging and place in Fairfax, where I moved from, selected a house that was all on one level and easy to live in.
[00:01:53] Speaker D: Okay.
[00:01:54] Speaker C: And flash forward to 2022.
I had retired and was living my best life. And I think that year I went to Florida four times. I went to California with my kids. So I'm really doing my thing, taking yoga classes. And in December of that year, my sister may called me from Philadelphia and say, my apartment has been robbed. Okay, hold on. I'll be right there.
[00:02:23] Speaker B: Absolutely.
[00:02:25] Speaker C: So I guess it took me maybe 45 minutes to throw something in a suitcase and tell everybody I'm leaving. And I got to Philadelphia before dark, and the neighbor across the hall was giving me some cues, and I said, oh, were you here when the police came?
She says, yeah. And I said, well, what about the robbery? She says, not so much.
So turns out there really wasn't a robbery.
[00:02:56] Speaker B: Cause you have nine siblings, right?
[00:02:58] Speaker C: We have nine.
[00:02:58] Speaker B: And this is sibling number.
[00:03:00] Speaker C: This is my oldest sister. She is sibling number three.
[00:03:05] Speaker D: Okay.
[00:03:06] Speaker C: She is the oldest sister.
[00:03:07] Speaker D: Okay.
[00:03:08] Speaker C: Five boys, four girls.
[00:03:10] Speaker D: Okay.
[00:03:11] Speaker C: And sadly to say, last year, we lost two brothers.
[00:03:15] Speaker D: Oh, I'm sorry to hear that.
[00:03:16] Speaker C: So I have one brother left, and all of my sisters are here, and we're trying to make do with what we can do.
It's interesting. If my mom was still alive, she'd be 110.
[00:03:29] Speaker D: Oh, my goodness.
[00:03:30] Speaker C: Okay, so there's this thing in the back of my mind is I don't remember it being complicated for people her age taking care of the older people. So what's wrong with me?
[00:03:43] Speaker D: Right, right.
[00:03:44] Speaker B: Well, it's a huge responsibility.
[00:03:46] Speaker C: It is. It is. So within a matter of weeks, I was able to convince Mae that, yeah, maybe you ought to leave Philadelphia, because she really doesn't have anybody there to help her out like I would. She has her church members, her community.
We have cousins there, but nobody's going to do it like the sister. And, oh, by the way, I'm the youngest.
[00:04:08] Speaker D: Right.
[00:04:09] Speaker B: That's a full time responsibility as well.
[00:04:12] Speaker D: Yes, it is.
[00:04:14] Speaker C: So it was quite a switch for both of us.
[00:04:18] Speaker B: Okay, so you got her here with you. Now tell me a little bit about how that's going.
[00:04:27] Speaker C: Well, initially, it wasn't too difficult because I had no idea what I was doing. When you don't know what you're doing, you just keep doing stuff.
And then I realized what trouble I was in because I didn't know what I was doing. But I knew I needed to find a geriatric doctor. So in finding the geriatric doctor, I was put in touch with the people in Amanda's group. Amanda is my memory care navigator, and she has been like an angel on my shoulder the whole time. And through that, I was able to get her doctor set up.
Turns out she was legally blind in the right eye. Nobody knew that.
And that eye lost its sight because of glaucoma. And she wasn't using the eye drops.
[00:05:22] Speaker B: So things probably slipped through the cracks. But not having family close to be.
[00:05:28] Speaker D: Able to understand what was going on.
[00:05:31] Speaker C: Within a couple of months, she was on four or five different eye drops. It fluctuates. Shout out to Doctor Guo and Doctor Erickson. They've taken excellent care of her. And the eye has stabilized because she had bleeding of the retina and just a whole host of things wrong with the eye. And so between January of last year and August, between the eye doctors and we got her physical therapy because she needed a walker, she kept falling.
[00:06:00] Speaker D: Right.
[00:06:02] Speaker C: We were able to stabilize a lot of things that were physically, you know, problems for her.
[00:06:09] Speaker B: So you were able to see the benefit of the memory care navigator?
[00:06:14] Speaker C: Absolutely.
[00:06:15] Speaker B: Because I, you know, just thinking about your story, if you didn't have somebody kind of walking you through, to your point, you don't know what you don't know.
And when you think of a navigator, sometimes people don't always think about that in the memory care space. So I think that's really important for our viewers to understand and glad that you're sharing, you know, the positive impact of having that person to be there to walk you through the journey.
[00:06:42] Speaker C: I literally would be sitting in a corner playing with my lip.
And in meeting Amanda, I was referred over to the peninsula agency on aging. Shout out to them because, yes, that's a great team.
[00:06:59] Speaker B: Absolutely.
[00:07:00] Speaker C: They put me in touch with a support group.
I'm kind of an introvert, low key, don't really need to be asking people for stuff. I moved down here to Hampton without knowing anybody because I could.
I worked from home before. Working from home was like the Vogue, you know, and I was good with that because that's just the way I am.
[00:07:24] Speaker B: You're right. You were used to kind of being on your own.
[00:07:27] Speaker D: Yeah.
[00:07:28] Speaker C: It wasn't too difficult once I met Amanda. Like, oh, I need to ask for help. Help.
I learned really, really good, Tim.
[00:07:37] Speaker B: So talk a little bit about the support group because we always think about the individual that's going through the dementia and the memory loss, but the caregivers take on so much and.
[00:07:52] Speaker C: Absolutely.
[00:07:53] Speaker B: How has that been for you?
[00:07:55] Speaker C: Well, shout out again to all my friends at the support group.
I've only been doing this for a year, and within my first couple of meetings of that support group, I was really humbled because here I'm thinking, I've got all these major problems.
I met people who had been caring for their loved one for six, seven years, and here I am, like, may takes care of herself. She cooks. When I left the house this morning, she was putting her laundry in the washer, and she could do the dryer and all. So I'm thinking to myself, well, what problems do I have? You're just whining and complaining.
And all the people that I met had a different story, but they were managing. So it kind of put it in perspective for you.
[00:08:47] Speaker B: Yes. Well, you know, I can only imagine when you think about retiring and settling down, you're not thinking that you're going to become a caregiver at that point.
[00:08:58] Speaker D: That's true.
[00:08:58] Speaker B: So, you know, just, your sister is so grateful to have you to be able to have someone care for them and love them during this challenging time.
[00:09:09] Speaker C: And what's interesting, we're kind of the introverts of the family.
[00:09:15] Speaker D: Okay.
[00:09:16] Speaker C: So my initial issue had to do with, is she gonna be okay with somebody living with it? In the 60 years that she lived in Philadelphia, she didn't live with anybody except for cousins initially, just to get her started.
[00:09:31] Speaker D: Right.
[00:09:32] Speaker C: She left Rock Hill, South Carolina, in 1959. I was about eight.
[00:09:37] Speaker D: Okay.
[00:09:38] Speaker B: I'm from Columbia, South Carolina. So is that where your family's from? We could be cousins.
[00:09:43] Speaker C: Absolutely.
Absolutely. So another issue was, I really didn't know May.
May was kind of, as I tell Amanda, our Mary Tyler Moore of the family, she went to the big city and she did well. She didn't have to come back home. In fact, she told me one time, I determined that I wasn't gonna go back.
And if anybody's in my age group, you know, grew up in the fifties, and you think about a town like Rock hill, South Carolina. Actually, we lived in a little place called Catawba.
[00:10:20] Speaker D: Okay.
[00:10:20] Speaker C: There wasn't a whole lot.
[00:10:21] Speaker D: I have not heard of Catawba.
[00:10:23] Speaker C: There wasn't a whole lot to do.
So may graduated high school. Mom got her birth certificate and sent her off to Philadelphia to, you know, do her thing.
[00:10:33] Speaker D: Right.
[00:10:33] Speaker C: And she was bound and determined that she wasn't going to come back. And she didn't, except for reunions and just to visit the family. And her hair was always nice. She had nice clothes. And I'm thinking, man, that's what I want to do. So she was kind of like my inspiration to, if she can do that and just, you know, leave completely and be on her own, I could certainly do that.
[00:10:57] Speaker D: Yeah.
[00:10:57] Speaker C: So she was an inspiration to me.
[00:10:59] Speaker B: What a whirlwind of events you've been through in a short period of time.
If you could give our viewers any piece of advice, what would that be?
[00:11:10] Speaker C: Learn how to ask for help early.
[00:11:13] Speaker D: Okay.
[00:11:15] Speaker B: And I've heard you say that several times, and it's hard for any of us sometimes in any situation to reach out for help and to feel okay with that. And that it's not a sign of weakness or inability. Right. It's not. But actually, it takes strength to be able to say, I need help.
[00:11:34] Speaker C: Absolutely.
[00:11:35] Speaker B: Yeah. Touch on a little bit. You talked about the PCP, and when we think about a primary care physician, we think about just our annual physicals.
Dealing with having someone that specializes in geriatric care is a little. Is a little different, and additional specialty. Talk a little bit about how that journey has been in that relationship.
[00:11:58] Speaker C: Having someone that specializes in all matter of aging issues gives kind of a comprehensive look. Instead of, I'm just looking at the person in front of me and the one or two things that, you know, they're talking about. They do tests, and, you know, when we met with Amanda's group, I mean, it was really comprehensive. They had someone in the pharmaceutical area. They had nursing, and, you know, someone looking after, you know, the different physical issues that she had. Because my need to get her into physical therapy was actually spun by, you know, meeting with their group.
[00:12:42] Speaker D: Meeting with their group.
[00:12:43] Speaker B: What's unique about Riverside health system is that our Martha W. Goodson center is unique to our integrated system. And so you were able to benefit from that because, you know, we provide care from birth throughout the lifespan.
As you experience when something like this comes up, to be able to have that embedded within the system from your primary care to navigator.
[00:13:08] Speaker C: Navigator, yes.
[00:13:09] Speaker B: It's something unique to us.
Can we talk a little bit about what's next?
[00:13:17] Speaker C: What's next is doing what she asked me to do when she came down, because she really doesn't want to be stuck in my house. I'm kind of boring.
[00:13:27] Speaker D: Okay.
[00:13:29] Speaker C: She's.
In some respects, she's more social than I am, and she's actually attended three of the memory cafes. Another good feature that I found out through the paa memory cafes are where caregivers and their loved ones that they're caring for come and meet and just socialize and have brownies and coffee.
And I think it really helps because no one says, oh, by the way, everybody here has dementia or Alzheimer's, but it's evident, you know, and we go around and talk about the good parts of our day and, you know, the interesting things about our lives. And when May 1 went there, she says, well, what is it? I said, it's just a bunch of friends getting together.
[00:14:25] Speaker D: Right?
[00:14:26] Speaker C: And when we got there, she sat and looked and said, why am I here?
As if she was gonna get up and leave. And I'm going, like, because it's fun. I said, these people are fun. I said, just hang in there. Have a brownie. Right, right. You'll be okay.
And they went around the table, and people introduced themselves, and by the time they got to her, she said, she introduced herself and was just so happy to be there. And in the last meeting, she says, I really like coming here because the people are so nice.
[00:14:57] Speaker B: Oh, that's really good. That's great.
So that's, you know, we talk about the good days. What do those not so good days? How do you manage those days? Cause I'm sure that there are times where more periods of confusion. And how do you manage that?
[00:15:18] Speaker C: I sing to myself.
I literally do.
Do you know James Taylor?
[00:15:27] Speaker D: No.
[00:15:30] Speaker C: Well, since I was born in 51, probably my taste is.
[00:15:35] Speaker B: I do know some. Some more seasoned genres.
[00:15:39] Speaker C: Okay, well, he has a song, shower the people you love with love.
[00:15:44] Speaker D: Okay.
[00:15:45] Speaker C: So I play that in my head, or I get my phone out and I play it on my phone, because it's kind of what you have to think about.
My mother had nine children. She basically raised us by herself, and she did it by showering us with love and, you know, protection and a lot of things in the south that were happening, we really weren't aware of what was going on because of.
[00:16:11] Speaker D: She guarded you from that.
[00:16:13] Speaker C: Right. So I'm thinking, well, why can't I do that in 2024 for one person?
Surely I can do that for one person.
[00:16:23] Speaker D: All right.
[00:16:25] Speaker B: What does a day in your walk.
[00:16:27] Speaker C: Look like on a good day like today?
I get up and I give may the eye drops. Right now, she's on four eye drops in the morning, and I find out how she's feeling. And, like this morning, we talked about the gospel show at the coliseum.
[00:16:50] Speaker D: Okay.
[00:16:50] Speaker C: So we picked the seats. She didn't want to be too close. She didn't want to be in the nosebleed section. So I picked a seat that's behind the. The seats on the floor on an aisle. So she has a walker.
[00:17:04] Speaker D: Okay.
[00:17:04] Speaker C: So we took care of all that, and I got ready to come here, and when I came out, she was getting her clothes ready to put in the washer, so she asked a few questions. She knows how to do it, but sometimes she wants to reaffirm. So I just stood back and said, do this, that, and the other, and she did it. And so that's a good day.
[00:17:25] Speaker D: Good.
[00:17:26] Speaker C: On a not so good day, I might wake up, and she's upset with me because she thinks that I've cut her hair or taken her curlers, which are some of the delusions that she has. And her hair is very important to her.
So on a bad day, I might be accused of a few things and find out that she's upset.
It makes me concerned, you know, if I have to leave her.
[00:17:55] Speaker D: Yes.
[00:17:57] Speaker C: But all in all, I think it's been a good transition for her and kind of for me, too, because I've learned some things about myself that I didn't know.
[00:18:07] Speaker D: Yes, yes.
[00:18:09] Speaker C: Some good. Some bad.
[00:18:10] Speaker B: Some bad. Yes. Well, I just. I just.
I just know she appreciates you. There's nothing like having somebody to be able to take care of you when you're in a situation like this. And I think, no, I don't think it's really good that she's still able to be in a home care environment.
[00:18:32] Speaker C: I think that'll make a big difference. But the transition is to get her into an assisted living facility because we've visited a couple times and she likes the interaction with other people.
[00:18:49] Speaker D: Right.
[00:18:50] Speaker C: And I don't go out much. I don't do much. That's why I try to do activities like the coliseum. And so I. I'm working on that. Amanda's helping me with that.
[00:19:00] Speaker D: That's good.
[00:19:01] Speaker B: And I was going to say, you know, having that memory care navigator can help you with all aspects of that, and there's such a benefit to that. And I just applaud that team for everything that they do.
And thank you so much for sharing your story. If there's ever anything that I can do in addition to what this team does, please don't hesitate.
[00:19:26] Speaker C: Future Columbia connections.
[00:19:29] Speaker B: Well, I'm like your sister, moved away from home very young and go back to visit. My mom's still fortunate enough to have my mom still with us, so they bring you back home to visit even though you may not inspire to live there full time. So thank you so much. Thank you for taking the time to talk with me today, and I wish.
[00:19:54] Speaker C: You all the luck.
[00:19:54] Speaker B: And I know that you're in great hands because you have great people around you.
[00:19:58] Speaker C: Absolutely.
[00:19:59] Speaker B: All right. Thank you. This concludes our episode. Thank you to our viewers, and check out our Lingq resources.
[00:20:08] Speaker A: Thank you for listening to this episode of Healthy Youth. We're so glad you were able to join us today and learn more about this topic. If you would like to explore more, go to riversideonline.com.
