Navigating Dementia: A Caregiver’s Journey of Love, Resilience, and Hard Decisions

[00:00:00] 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. All right. I am really excited to have with me today in the Healthy you podcast studio, Mister Roydon Goodson. Mister Goodson is a caregiver, and today, this episode, we're going to be talking about navigating dementia. A caregiver's journey of love, resilience, and hard decisions. Welcome to today's episode of Healthy you. I'm your host, Frankie Myers, and today we have a deeply moving and insightful conversation lined up. We're joined by a special guest, as I mentioned, Mister Goodson, who has navigated the challenging role of caregiver for his wife with dementia, as well as his parents, who also face this difficult diagnosis. He will be sharing his personal journey as a caregiver, offering invaluable insight about tough decisions he's had to make, and providing a heartfelt advice for our viewers. Alrighty. Hi. [00:01:26] Speaker B: Hi there. Thank you. Thank you for having me. [00:01:28] Speaker A: You're welcome. It's great to see you and great to have you with us. For our listeners to have just a little bit of background, can you talk to us a little bit about your connection with Riverside? [00:01:39] Speaker B: I gotta say, it must have started in 1955, and I was born. Born in Riverside Hospital. [00:01:45] Speaker A: Wow. You don't look like it. You wear it well. [00:01:49] Speaker B: Thank you. So I've been involved with Riverside my entire life. Lived in this community my whole life. Okay. Been on the board at Riverside Regional Medical center for about 20 years now. And I've been chairman of the board for three or four years. [00:02:02] Speaker A: Yes, yes, yes. Thank you. Thank you for your commitment. We love having you a part of our family. We appreciate what you do for our team members, our patients, our residents, and most importantly, our community. So what I would like for you to do is just touch a little bit about your journey as a caregiver and taking care of Martha. Can you talk a little bit about this? [00:02:25] Speaker B: Yes. Martha was diagnosed with Alzheimer's disease, which is a form of dementia. Dementia being an umbrella term, Alzheimer's being the most prevalent form of dementia. She was diagnosed nearly nine years ago at age 57. We would call that young onset. Yes. So I cared for her at home for the first four years and thought that would be the journey but things changed. And she's been in a more supportive care facility since about mid 2019. [00:03:00] Speaker A: Yes. Yes. Was it a slow process or did things evolve and change fairly quickly? [00:03:09] Speaker B: Mister Goodson, reflecting back, it was slow. Looking back on it, it was pretty obvious. But I started noticing things, enough to say something to her doctor, her family practice doctor, in mid 2019, and she said, what do you want to bring Martha in? I said, oh, it's probably nothing. She's got a regular physical coming up in November. Let's just wait until then. So it was, it was slow. There were, there were a lot of, I mean, at that age, you just don't expect it. [00:03:42] Speaker A: Yes. And just from my experience as a nurse, sometimes they, they remember, like, stories from the past and they'll say them over and over. It's the more recent memory sometimes. So it's hard to pick up on. [00:03:57] Speaker B: A little hard to pick up sometimes with her because she was still very functional. She was having trouble with wayfinding directions. She was never, but so strong in that. So I didn't think much about it. [00:04:08] Speaker A: Right, right. I could see that along with the support of your family, you also were a caregiver for your parents. Can you talk a little bit about that and how you cared for them at home? And do you think that prepared you in some way for what you experience with Martha? [00:04:28] Speaker B: Well, my mom died in 2018. She was 88 when she died. My dad died in 2022. And I'm not sure if dad was ever formally diagnosed, but he did have some cognitive impairment. But they both had full lives. They stayed at home until the end. I have a brother and a sister, and brother lives here locally, sister lives overseas, but they were both very supportive. We were fortunate to be on the same page, and we had caregivers in the home for them. Golly, probably for upwards of ten years. [00:05:07] Speaker A: Wow. Okay. [00:05:08] Speaker B: And at the end, we had 24 hours care in for dad. [00:05:11] Speaker A: Okay. Okay, well, good, good information. All righty. Was your journey with caring for your parents different from your journey with Martha? And I would think it would be. [00:05:27] Speaker B: In some ways, well, structurally it was different. When we, for mom and dad, we had caregivers at the home. We had to manage them, and we had good caregivers. We had a lead caregiver that sort of coordinated the, the food and getting them to the doctor and taking care of that sort of thing with Martha. I cared for her at home as long as I could, and then we went to a care facility. Now, dad really wanted to stay at home, and I don't blame him. It was a beautiful house and a lot of good memories there. But towards the end, he was really lonely. And I felt like if he was in a facility, he was sort of an extrovert. He would have. I think he would have been better, but that's what he wanted to do, and so that's what we did. Yes, but I think your question's probably a little larger than that. The journey of caring for a spouse is different than caring for a parent. It's just a lot more intimate. [00:06:33] Speaker A: Yes. [00:06:34] Speaker B: You choose your spouse. [00:06:36] Speaker A: Well, that's a good point. [00:06:38] Speaker B: You don't choose your parents. [00:06:39] Speaker A: That's true. [00:06:40] Speaker B: So I chose her and she chose me. And we were together. I always felt loved. And so the feeling of loss is a lot more intense because of that relationship. So my job now is to make sure that Martha feels like she's loved. So you might say that all of her is not there. I think. I think it is. It's hard to see. But she knows she's loved. [00:07:13] Speaker A: Yes, she does. [00:07:14] Speaker B: So that's my job. [00:07:15] Speaker A: She does, because she's well taken care of. I think that's something we all hope for. So that's beautiful. Thank you for sharing that. When you were caring for Martha at home, what did a day look like for you? You know, walk us through that experience. [00:07:35] Speaker B: Well, it varied as the disease progressed. Obviously, at first, not much changed. She could still drive. She could still live a normal life. She could work in the yard or in the kitchen. She was strong socially. She could visit with her friends. Friends come to visit. They could go. Go to lunch, that sort of thing. She could fool a lot of people because she was just good at social chit chat. She may not remember your name, but it's like, hey, girl, how you doing? [00:08:07] Speaker A: You fake it. [00:08:08] Speaker B: How to kiss. [00:08:08] Speaker A: We forget now. Like, I know her from somewhere. [00:08:11] Speaker B: Where'd I know her from? [00:08:11] Speaker A: I don't want to tell her. [00:08:12] Speaker B: I don't remember exactly. And so that was. That was. That was fun. We continued that, and as the disease progressed, I ended up spending more time with her. And I was fortunate. I was a place in my career. I could do that. So we spent more time together doing the things she used to do on her own. Simple things like going to the grocery store. And we did a lot of that together. And then time came when we couldn't even do that. [00:08:43] Speaker A: Yes. Yes. All right. You mentioned your experience with trips at the grocery store. How did you know you could no longer take Martha with you to the grocery store? [00:08:57] Speaker B: Okay. [00:08:57] Speaker A: Well, I think there's a story behind that? [00:08:59] Speaker B: Yeah, there's a story. There's a story behind that. [00:09:04] Speaker A: Are you okay sharing? [00:09:05] Speaker B: Oh, absolutely. Some of these things, I mean, they absolutely were not funny at the time, but you can look back and many caregivers will see that there were these events that just came up. And when they do, it's like, okay, well, life has changed. It's not going back. So. And there was a time when she could go to the grocery store, and even with the list, she come home and missed some things on the list. And even though we had two years worth of olive oil in the house, here comes some more. Okay. And that was fine. It was just olive oil. But eventually I started going with her. And so the last time we went to the air steamer, we were just picking up a few things. And, you know, I'm kind of working off a list, and she is going around just plucking everything up. Everything's going in the cart, and I'm trying to put it back on the shelf and she's not looking. And there is more stuff coming in than I can put back. [00:10:08] Speaker A: Right? [00:10:09] Speaker B: Oh, yeah. So then she decided, we need some eggs. And, you know, a lot of times with eggs, you kind of open the carton to see if a couple are cracked or not. Yeah, right, right. Well, the eggs went to the ground. Now they're all cracked. So I got a dozen cracked eggs, and she is off to the next thing. It's like, oh, man, we gotta get out of here. So, you know, tell the store person, you got a problem back there by the edge. [00:10:34] Speaker A: Don't call me later. [00:10:35] Speaker B: Yeah. And so we get to the checkout line, you know, and we're trying to check out, and I'm trying to put, you know, the four bottles of spaghetti sauce to the side, you know, and the checkout person is asking me, don't you want that? It's like, no, I don't. She's looking at me like I'm crazy. So I have this little card in my pocket, and it's a really good thing to have. And it's a little business size card, and it says, the person with me has memory problems. [00:11:04] Speaker A: Okay. [00:11:05] Speaker B: Please have patience. [00:11:06] Speaker A: Oh, yeah. [00:11:08] Speaker B: So I whipped that out, and I gave it to the cashier. And she looks at it, and she looks at me, and it's like, what about the spaghetti sauce? I said, read the card. Yes. And then she's like, the person with me is like, no, no, you're getting me. It's just. Let me give you my credit card. So, anyway, at that point, I realized I needed somebody to stay with her so I could take care of the basics of life. I mean, somebody. You have to go to the grocery store. [00:11:32] Speaker A: Absolutely. [00:11:32] Speaker B: You still go to the cleaners. You just have to do that stuff. [00:11:36] Speaker A: Yes. [00:11:36] Speaker B: So, anyway, it's like, okay, we're gonna need. We're gonna need some help. [00:11:42] Speaker A: Wow. How did you take care of yourself? That there's a huge. I could see a huge emotional piece with this. How did you make sure you were okay? And I'm going off, you know, some of our questions, but I do think. We don't always talk about that. That's a huge undertaking on you. [00:12:03] Speaker B: Well, the. I mean, one of the most important things that you have to do as a caregiver is understand the importance of self care. [00:12:12] Speaker A: Yes. Yes. [00:12:15] Speaker B: You have to keep your mind and your body healthy. [00:12:19] Speaker A: Absolutely. [00:12:20] Speaker B: And if something happened to me while I'm caring for Martha at home and I go down, and then I couldn't care for Martha, so realizing that I needed to care for myself, I needed to build a team to let me be me. [00:12:45] Speaker A: Yes. That's a great point, and you hit it spot on. That motivator is knowing that if I'm not here and I'm not, well, then the person that needs me the most won't have that. Just like we do for our children. Right. When we're raising them, we always say, we just want to make sure you're taken care of, and we take care of ourselves so we don't have to depend on someone doing that for us. [00:13:06] Speaker B: Right. So you need. You need to build a team. [00:13:08] Speaker A: Absolutely. Okay. But there's more to building the team, right? Talk a little bit about that. [00:13:17] Speaker B: Well, it's more than just hiring a babysitter. [00:13:19] Speaker A: Yes. [00:13:19] Speaker B: It just is. I needed somebody to look after Martha, but I needed people that would connect with her, people that could validate her feelings and live in her reality. But she's living in a different reality than the one I live in. And I can enter Martha's reality, but I can't bring her back to my reality. I can't bring her back to the life we used to have together. Those days are gone. And so she needed people that understood that, that were willing to be with her and just love her the way she is, not the way she used to be, but love her for the person she is. And I had to find a way to leave that reality. I could go into her reality, but a healthy mind still needs some logic and reason, and so I couldn't stay there. And I had to give myself permission to live the life that I had and do the things that brought me joyous and allowed me to recharge. [00:14:41] Speaker A: Absolutely. [00:14:43] Speaker B: And, you know, the different circles to my life. I was a caregiver for Martha, but I was also a son to my dad. Yes, father to my children, my three children, and they live around the country, but I just couldn't leave my dad's life, couldn't leave my children's life, couldn't leave my work life. And so part of it was, is giving myself permission to do that. And part of it was, and this is not easy for some people, is allowing people to help. We're just, particularly in America, we're raised to be independent. I got this. [00:15:25] Speaker A: It's hard. Yeah, sometimes to ask for help. [00:15:28] Speaker B: So I needed to ask for help, so I need to learn how to do that. [00:15:31] Speaker A: Yes. Very, very good. What is the biggest barrier to building a team? [00:15:39] Speaker B: Well, it varies, and everybody's situation is different. And some people have family that live close by, some have large circle of friends, some have a faith community, some people don't. Some people are in second marriages, and there's just different. And if you're looking at paid caregivers, then finances come into play. That's not inexpensive. But the biggest impediment, I would say, is not accepting the reality of the diagnosis. And denial in caregivers is fairly common, and it actually works in two ways. Some people think they can handle it on their own, particularly people like myself, been in the business world and used to running the show and making decisions and solving things, but this disease will wear you out. It's not content just to take down the life of the person with dementia. It wants to take the whole family down, and the disease will wake you up. When Martha was at home, I used to wake up at the sound of a barefoot on carpet. I mean, I just wasn't sleeping well. And that's not healthy. You always on alert. Right. You cannot sustain that. And if you try to sustain that, you'll end up with health challenges that will take you out of the caregiving game. So that's one way people think they can handle it on their own. Another way it's pretty common is just deny that anything is going on, and it's tempting to go on with your life hoping that your loved one is safe. The diagnosis is just so difficult that many people ignore it as long as they can because they just don't want to think about how much different their life is going to be. And if you do that, if you just ignore it, you're setting yourself up for a crisis is probably going to happen. And when that does, your life spins completely out of control. And so it's important to accept the reality of the disease. Yes, it's terrible, but it's not the end of the world. No. There's still life left. [00:18:03] Speaker A: Absolutely. That's powerful. Absolutely. How important? And this is just from my own, you know, I haven't dealt with it firsthand. I've had friends and family members that have dealt with both dementia and Alzheimer's. Is a routine important? So is it important that there's consistency? So, as it relates to a caregiver, they're dealing with the same people and the same routines. Does that come into play, or are there things that could trigger them if they're used to having things done a certain way? [00:18:37] Speaker B: Frankly, I would say that is generally true, but it depends on the personality that the person brings in to it. So if they're a person that's always liked order, they're going to like that more. Some people thrive in chaos. Okay. And if you try to fit them into a very orderly situation, they're going to push back on that. So it goes both ways. You have to know the person that has the disease in where they are. When Martha went to the care facility, we took the furniture and the paintings and all that stuff from the house, and we made the room look like home. And Martha was having nothing to do with that. [00:19:28] Speaker A: Wow. [00:19:29] Speaker B: She knew she wasn't home, and she. I mean, she didn't want to look home. No, no. Didn't want to look like home. And so we ended up taking out everything except sofa and a bed. That was about it. [00:19:40] Speaker A: Wow. [00:19:40] Speaker B: Yeah. [00:19:40] Speaker A: Okay. [00:19:41] Speaker B: And she adjusted to that. That was fun. Now the people have a different experience. [00:19:46] Speaker A: Right, right. So it's not a one size fits. [00:19:49] Speaker B: All, but when it comes to caregivers, consistency helps. Yes, if you find the ones. And Martha had people that she bonded with. [00:19:59] Speaker A: Yes. [00:19:59] Speaker B: And so that was important. They knew Martha. They knew her quirks. They knew things she liked. They knew some days they were gonna get sent out the door. It's like, okay, I'll just sit on the front porch. [00:20:12] Speaker A: Okay. [00:20:13] Speaker B: And then 15 minutes later, come back in the house. Oh, Gail. Good to see you. I love it. [00:20:20] Speaker A: I love it. I've had a time out, Gail, I'm okay with talking with you now. [00:20:24] Speaker B: Okay. [00:20:27] Speaker A: I love it. All right. Well, driving is also a big topic of conversation for those that are caring for loved ones with dementia. All of the questions around should they be driving? Should they not? Can you share with us your experience around driving? [00:20:44] Speaker B: Yeah. Well, one of the big issues in dementia care is the balance between safety, independence, and so when we're raising children, we're keeping them safe. And then as they grow older, they learn how to make those judgments for themselves, and they become more independent. They learn to look both ways before crossing the street. So in dementia, it's kind of working in reverse. They have this independence. Now, we're trying to keep them safe, but they're adults, and you might be able to get away with the child telling them 100 times, look, before you cross the street. [00:21:22] Speaker A: Yes. [00:21:23] Speaker B: You ain't gonna get very far telling that to an adult. I know what I'm doing. And so driving is one of those things that is a big part of independence. Get in the car, go where I want to go when I want to do what I want to do. And so it is. It's a big one. Now, Martha was fairly easy. About half the people that have dementia are aware they have it. The other half are not aware they have it. And it's not that they're trying to be mean or deny they have it. The part of their brain that would allow them to know that they have dementia's disease. So they don't know. Now, Martha was in the half that knew, okay? And of the half that know, roughly half of them try to hide it, don't want anybody to know. And the other half are fine asking for help. And so that's where Martha was. She was always a cautious person, and she self limited her driving, so that was kind of nice. She was afraid she might get lost or hurt somebody. And when it came time to stop, she was fine, as long as I was willing to drive her driver where. [00:22:37] Speaker A: She wanted to go. [00:22:41] Speaker B: So she always preferred the safety side. My dad was a little different. [00:22:46] Speaker A: Did you have to hide the keys in your dad's situation? [00:22:52] Speaker B: You know, if we hid the keys, he would find them. You can do something made. I mean, it's just the way he worked. [00:22:56] Speaker A: Call the company out, right? [00:22:58] Speaker B: Yes, yes. One day he made a mistake. He said, how you doing? And I said, well, dad, I'm concerned. He's like, you're concerned? What are you concerned about? Right. Well, dad, I'm concerned. You know, as you've gotten a little older, your ability to drive might not be what it was. He says, well, you shouldn't be worried about that. It's like, okay, but I am, right. All right, well, I'll show you I'm a good driver. I said, oh, you will. Okay, so you wouldn't mind going to the DMV, because if they say you're a good driver, I'll say you're a good driver. All right, come on, let's go. Off we go down to DMV. Actually went with the caregiver. She comes home and he's like, I don't know how he did it. He had macular degeneration. He was blind in one eye and he could barely see in the other eye. And somebody passes a vision test, and he's, you know, he's a great fellow. And somehow he talked to drive. And the instructor is like, it's all, you know, all good. He's like, dad, gone. Okay, but there's one more thing at that age is you have to get a note from your doctor, right? So I called his riverside primary care doctor, and it's like, hey, doctor Souther, I need a little help here. My dad took driving the house. He says, is he still driving? Well, yeah, as a matter of fact, he's about to get his license renewed. And he said, I'll take care of that. So he wrote a letter to DMV. And actually, in Virginia, there is an anonymous at risk program. And so if you think somebody's at risk, you can write a letter. They will keep it anonymous. And based on their age and the circumstances, they will step in. And so part of it is a vision test, and it's being able to recognize the street signs and that sort of thing. So anyway, doctor Souther took over, and that was the end of that. And dad said, for a number of years after that, I think you were in cahoots. It's like, no, I was just concerned. So that's what worked. That's what worked for dad. [00:25:11] Speaker A: Yes. And that's good to know. That's good for our viewers to know. Absolutely. All right, so where are we now? Great information. Thank you so much for sharing. This is very helpful. There's nothing like hearing firsthand from someone who's experienced this. So I appreciate you being so forthcoming with us today. Alrighty. So what about visits to the doctor and that routine? [00:25:41] Speaker B: That routine, right. Well, at some point, as a caregiver, you have to decide when to stop going to the doctor. And the whole question of palliative care and hospice care, I think you probably had some podcasts on that. [00:25:57] Speaker A: Yes, yes. [00:25:58] Speaker B: But when Martha moved to a care facility, they had me answer a difficult question. They asked me if I ever wanted them to call 911. Well, fortunately, Martha and I talked about that. She had an advanced medical directive, and that was pretty specific. She didn't want extraordinary measures like feeding tube, ventilator things that would prolong her life. But now, at a care facility, what if it looked like she was having a stroke or heart attack? What are we going to do? [00:26:38] Speaker A: That's a good point. [00:26:39] Speaker B: What if she has cancer? [00:26:41] Speaker A: Yes. [00:26:42] Speaker B: Are we going to treat that? So my response says that if it looks like she's having a heart attack, that's probably her ticket out of here. And I was comfortable with that because she and I had talked about that, and other people feel differently, and you get to feel differently. My point is, you should talk to your loved one. You should talk to your family members. Even if you're in good health, talk to your kids. I'll make sure they know. Now, if she was in treatable pain, it's a little bit different. And at one point, Martha broke her foot in the care facility, and she needed surgery to fix the foot. And so we did that. Absolutely, because we. I wanted her to be able to walk again, but whenever I took her to the orthopedic office, you know, sometimes doctors will make you wait. Did you know that? [00:27:41] Speaker A: Oh, yeah. Unfortunately I do. I don't get a pass either. Okay. [00:27:46] Speaker B: Yeah. [00:27:47] Speaker A: And I'm a nurse. [00:27:48] Speaker B: Okay. [00:27:49] Speaker A: No professional courtesy in that aspect either. [00:27:51] Speaker B: So I'd always do a dry run. [00:27:53] Speaker A: Yes. [00:27:53] Speaker B: The day before, I would go by myself and I would go to the office and I would explain Martha's situation and how it's not going to be good for her or them for her to have an extended period in the waiting room. And if she was there to get an x ray, I would find out who was going to be on the reception duty the next day at 11:00 whenever the appointment is. And I said, would you give me your cell phone number, and I'm going to give you a call. When we're here and when the exam room is ready for her, you send me a text, you give me a call. We'll be in the parking lot. We may be doing laps in the parking lot because she liked to ride in the car. She didn't, like, sit someplace, particularly with a lot of people around. And so they would send me a text and I'd get the car parked and up we would go and we'd do the exam, and we were out of here. Smart. Yeah. So I thought it was just, you know, whatever you can anticipate, try to do. [00:28:51] Speaker A: That's good. That was a good way of handling that. What is the one thing that would be most helpful for caregivers, in your opinion? [00:29:03] Speaker B: Can I have two? [00:29:05] Speaker A: Yes, you can have three. We'll take all the pearls we can get from you. [00:29:13] Speaker B: I would say the first thing is to acknowledge and embrace the new reality as quickly as you can. Yes, your life has changed in a terrible way, and it's not going back. But you can still have beautiful days. So learn to flex and flow and enjoy the connection that you have with your loved one. And then the second we talked about this, some is taking care of yourself. You've got to keep your mind and your body healthy. But I would say there's a spiritual component of that, too. And some people may wonder why God would allow this to happen to them or to their loved one. And I certainly wrestled with that question. But I came to understand that God uniquely placed me here to be able to care for and love Martha. [00:30:09] Speaker A: Absolutely. [00:30:10] Speaker B: So many of us have different belief systems. I'm not trying to tell anybody what to believe, but I believe that one day life is going to be restored for eternity with the healthy mind and a healthy body. And so that means what I do now is going to matter. [00:30:31] Speaker A: Absolutely. [00:30:32] Speaker B: So if you haven't considered that part of your life, I would encourage you to do so. Because it's been a very big help for me in the downtimes. And there are downtimes. I can give you the Instagram version of my life, and I may have done that today, but there have been some difficult times. But for me to know that one of these days, it's going to make sense and we're going to be restored gives me great peace, and it helps me find strength to keep going. [00:31:05] Speaker A: Absolutely. Absolutely. I would just like to thank you, Mister Goodson, aka Roydon. I like Roydon for, you know, taking time out of your busy schedule to talk with us today, and then all that you've done. I have been with Riverside. I'm approaching two and a half years. And I just feel so honored to have met you and to be able to see you advocate as you participate on the regional medical center board and also the system board. And I feel like I did something right, because as a nurse, I've been able to see someone who is not a healthcare professional, but has dedicated their life to giving back and created such a powerful legacy. And I know you put a lot of thought in where you want your legacy to be. And I can see why you chose Riverside health. Because we do live our mission. We care for our patients and the communities that we serve. So thank you, sir, for your commitment and dedication and entrusting us to continue on with your legacy. [00:32:14] Speaker B: Okay. [00:32:14] Speaker A: Thank you for joining us. Thank you so. And to our listeners, thank you for listening. If there's a health topic you're interested in learning more about and having it on our podcast, please email your idea to Riverside strong. 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 explore more, go to riversideonline.com.