Title: Healthy YOU Podcast, Episode 29: Compassion and Memory: Navigating the Caregiver’s Path for a Sister with Dementia
Host: Frankye Myers, Chief Nursing Officer for Riverside Health System
Expert Guest: Mattie McKnight, Caregiver for Sister with Dementia
Frankye Myers: 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 into learn more about becoming a healthier youth.
This is the Healthy You podcast 29th episode, and I am going to be talking with Mattie 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, Mattie McKnight.
Mattie 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, Mattie.
Mattie McKnight: Good morning. How are you?
Frankye Myers: Thank you so much for joining us today. Tell me a little bit, Mattie, about yourself and a little bit about your sister, if you're okay with that to start off.
Mattie McKnight: Okay. My name's Mattie McKnight and I moved to Hampton in 2015. Drove my real estate lady crazy. I want to live by the water cause 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. Okay. And since I was into aging in place in Fairfax where I moved from, I selected a house that was all on one level and easy to live in.
Okay. 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.
Frankye Myers: Okay.
Mattie McKnight: Hold on. I'll be right there. Absolutely. 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 said yeah, and I said well, what about the robbery? She says not so much So turns out there really wasn't a robbery
Frankye Myers: Because you have nine siblings, right?
Mattie McKnight: We have nine.
Frankye Myers: This is sibling number
Mattie McKnight: This is my oldest sister. She is sibling number three. Okay. She is the oldest sister.
Frankye Myers: Okay.
Mattie McKnight: Five boys, four girls.
Frankye Myers: Okay.
Mattie McKnight: And sadly to say last year we lost two brothers.
Frankye Myers: Sorry to hear that.
Mattie McKnight: 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, it's interesting. If my mom was still alive, she'd be 110. Oh my goodness. 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? Right,
Frankye Myers: right, right. Well, it's a, it's a huge responsibility.
Mattie McKnight: It, it is. It is. So within a matter of weeks, I was able to convince May 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.
Frankye Myers: Right. That's a full time responsibility.
Mattie McKnight: It is. Yes, it is. So it was quite a switch for both of us.
Frankye Myers: Okay. So you got her here with you now. Tell me a little bit about how that's going.
Mattie McKnight: Well, initially it wasn't too difficult cause I had no idea what I was doing.
When you don't know what you're doing, you just keep doing stuff. Right. 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.
Frankye Myers: So things probably slipped through the cracks, but not having family close to be able to understand what was going on.
Mattie McKnight: Within a couple of months she was on four or five different eye drops. It was, fluctuates. Shout out to Dr. Guo and Dr. 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.
Frankye Myers: Right.
Mattie McKnight: We were able to stabilize a lot of things that were. physically, you know, problems for her.
Frankye Myers: So you were able to see the benefit of the memory care navigator.
Mattie McKnight: Absolutely.
Frankye Myers: 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.
Mattie McKnight: 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,
Frankye Myers: yes. That's a great team. Absolutely.
Mattie McKnight: They put me in touch with a support group. I'm kind of an introvert. Okay. Low key. Okay. 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.
Frankye Myers: You were used to kind of being on your own.
Mattie McKnight: It wasn't too difficult once I met Amanda, like Oh, I need to ask for help. Help. I learned really, really good tips.
Frankye Myers: 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 how has that been for you?
Mattie McKnight: 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, you know, Washer and you know, she could do the dryer and all so I'm thinking 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 Make me want to
Frankye Myers: put it in perspective for you.
Yes. Yes. Well, you know, I can only imagine when, when you think about retiring and settling down, you're not thinking that you're going to become a caregiver at that point. So you know, just your, your sister is so grateful to have you to be able to have someone care for them and love them during this challenging time.
Mattie McKnight: And what's interesting, but we're kind of the. introverts of the family. So my initial issue had to do with, is she going to be okay with somebody living with her? Because she, in the 60 years that she lived in Philadelphia. She didn't live with anybody except for cousins initially, just to get her started.
Frankye Myers: Right. Right.
Mattie McKnight: She left Rock Hill, South Carolina in 1959. I was about eight. Okay.
Frankye Myers: I'm from Columbia, South Carolina. So is that where your family's from? We could be cousins. We could be cousins for sure.
Mattie McKnight: Absolutely. Absolutely. So, another issue was, I really didn't know Mae. Okay. May was kind of a, as I tell Amanda, our Mary Tyler Moore of the family.
Right. 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 going to 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 Okay.
There wasn't a whole.
Frankye Myers: I have not heard of Catawba.
Mattie McKnight: There wasn't a whole lot to do. Okay. So May graduated high school. Mom got her a birth certificate and sent her off to Philadelphia to You know, do her thing. Right. 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. Right. 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 could do that and just, you know, leave completely and be on her own, I could certainly do that. Yeah, so she was an inspiration to me.
Frankye Myers: 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?
Mattie McKnight: Learn how to ask for help early. Okay.
Frankye Myers: And I've heard you say that several times and, and it's hard for any of us sometimes, in any situation to, to reach out for help and, and to feel okay with that. Yes. And that it's not a sign of, of weakness or inability, right?
It's not. But actually it takes strength to be able to say, I need help. Absolutely. 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.
Mattie McKnight: 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 test.
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 spawned by, you know, meeting with their group.
Frankye Myers: Meeting with their group. 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.
Navigator. Yes. It's something unique to us. Can we talk a little bit about what's next?
Mattie McKnight: 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. Okay. She's In, in some respects, she's more social than I am, and she, 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. Right. 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 Mae first went there, She says, Well, what is it? I said, It's just a bunch of friends getting together. And when we got there, she sat and looked and said, Why am I here? As if she was going to 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.
It'll be okay. And they went around the table and people introduced themselves. And by the time they got to her, she's, she, 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. It's fun.
Frankye Myers: Oh, that's really good. That's, that's, that's great. So that's, you know, we talk about the good days. What, what do those not so good days, how do you manage those days? Because I'm sure that there are times where more periods of confusion and, and, and how do, how do you manage that?
Mattie McKnight: I sing to myself. Okay.
I literally do. I do you know James Taylor?
Frankye Myers: No.
Mattie McKnight: Well, since I was born in 51, probably my taste in music is a little different.
Frankye Myers: Do, I do know some, some more seasoned genres. Okay.
Mattie McKnight: Well, he has a song Shower the People You Love with Love. Okay. So I play that in my head or I get my phone out and I, you know, 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, we really weren't aware of what was going on because she, she guarded you from that. 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.
Frankye Myers: All right. Okay. What does a day in your walk look like
Mattie McKnight: on a good day like today? Uhhuh . I, I get up and I give Mae the eyedrops right now. She's on four eyedrop eyedrops in the morning.
Okay.
And I find out how she's feeling. And like this morning we talked about the gospel show at the Coliseum.
Okay. 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, she has a walker. 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.
Very good. 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. 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 and it makes me concern, you know, if I have to leave her. 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.
Frankye Myers: Yes. Yes.
Mattie McKnight: Some good, some bad.
Frankye Myers: 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.
Mattie McKnight: 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. 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, I'm working on that. Amanda's helping me with that.
Frankye Myers: That's good. 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, if there's ever anything that I can do in addition to what this team does, you know, please don't hesitate to reach out.
Mattie McKnight: We're going to have to find out about your Columbia connections.
Frankye Myers: Well, I'm like, 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 Mm-Hmm 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 you all the luck and I know that you're in great hands because you have great people around you. Absolutely. All right. Thank you. This concludes our episode. Thank you to our viewers and check out our link resources.
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