Title: Healthy YOU Podcast, Episode 32: Navigating Dementia: A Caregiver’s Journey of Love, Resilience, and Hard Decisions
Host: Frankye Myers, Chief Nurse Executive for Riverside Health
Expert Guest: Royden Goodson, Caregiver
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 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, Mr. Royden Goodson. Mr. 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, Frankye Myers. And today, we have a deeply moving and insightful conversation lined up. We're joined by a special guest, as I [00:01:00] mentioned, Mr. Goodson, who has navigated the challenging role of caregiver for his wife with dementia, as well as his parents, who also faced this difficult diagnosis.
He will be sharing his personal journey as a caregiver, offering invaluable insights about tough decisions he's had to make and providing heartfelt advice for our viewers. Alrighty. Hi.
Royden Goodson: Hi there. Thank you. Thank you for having me.
Frankye Myers: 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?
Royden Goodson: I got to say it must have started in 1955 when I was born in Riverside Hospital.
Frankye Myers: Wow. Wow. You don't look like it. You wear it well.
Royden Goodson: 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.
Frankye Myers: 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?
Royden Goodson: Yes. Martha was diagnosed with Alzheimer's disease, which is a form of 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 dementia.
Yes. So I cared for her at home for the first four years and thought that would be the journey. Yes. But things changed and she's been in a more supportive care facility since about mid 2019.
Frankye Myers: Yes. Yes. Was it a slow process or did things evolve and change fairly quickly, Mr.
Goodson?
Royden Goodson: It was slow and 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 slow. There were a lot of signs. At that age, you just don't expect it.
Frankye Myers: Yes. And just from my experience as a nurse, sometimes 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. A little hard to pick up with
Royden Goodson: 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.
Frankye Myers: 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? Okay. And do you think that prepared you in some way for what you experienced with Martha?
, my mom died in 2018. She was 88. Okay. 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.
Royden Goodson: 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. Upwards of 10 years.
Wow. Okay. And at the end, and we had 24 hour care in for dad.
Frankye Myers: Okay. Okay. Good information. Alrighty. Was your journey with caring for your parents different from your journey with Martha? And I would think it would be in some ways.
Royden Goodson: 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 that we had a lead caregiver that sort of coordinated the food and getting them to the doctor and taking care of that sort of thing. With Martha, I cared for his home 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's a beautiful house. And a lot of good memories there. But towards the end, he was really lonely. And it felt like if he was in a facility, he was an extrovert. He would have, I think he would have been better. But that's what he wanted to do. And that's what we did.
Frankye Myers: Respected his wishes.
Royden Goodson: 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. Yes. And you choose your spouse.
Frankye Myers: That's a good point.
Royden Goodson: You don't choose your parents. That's true. So I chose her.
Yes. 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. You might say that all of her is not there. I think it is. It's hard to see. But she knows she's loved.
Frankye Myers: Yes. She does.
Royden Goodson: And so that's my job.
Frankye Myers: 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 it, what did a day look like for you? Walk us through that experience.
Royden Goodson: 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 come to visit, they could 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? You fake it. How'd it kids? We forget now. Like I know her from somewhere. Where'd I know her from? I don't remember.
Exactly. And that was fun.
We continued that. And as the disease progressed, I ended up spending I spent more time with her and I was fortunate I was a place in my career where I could do that. 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.
Frankye Myers: Yes. Yes. Okay. All right. You mentioned your experience with TRIPS at the grocery store. How did you know? you can no longer take Martha with you to the grocery store.
Royden Goodson: Okay.
Frankye Myers: I think there's a story behind.
Royden Goodson: Yeah, there's a story. There's a story behind that. Are you okay sharing? Oh, absolutely. Some of these things, 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.
It, And when they do, it's okay life has changed. It's not going back. And there was a time when she could go to the grocery store and even with the list, she'd come home and miss 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. And, but eventually I started going with her. And so the last time we went to there, we're just picking up a few things and, I'm working off a list and she has gone around just. Plucking everything off.
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. Oh yeah. So then she decided we need some eggs. And you know a lot of times with eggs, you open the carton to see
Frankye Myers: A couple are cracked or not, right?
Yeah. Yeah.
Royden Goodson: The eggs went to the ground. Now they're all cracked. Oh, goodness. So I got a dozen cracked eggs. Oh. And she is off to the next thing. It's oh man, we gotta get outta here, . Tell the tour person, Hey, you got a problem back there by the egg. Don't call me later. Yeah. . And so we get to the checkout line, and we're trying to check out, and I'm trying to put, the four bottles of spaghetti sauce to the side, and the checkout person is, is asking me, don't you want that? It's 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.
Frankye Myers: Okay.
Royden Goodson: Please have patience.
Frankye Myers: Oh.
Royden Goodson: Yeah, so I whip that out and I give it to the cashier and she looks at it and she looks at me and it's what about the spaghetti sauce, read the card.
Yes. And then she's the person with it, like no,
Frankye Myers: you're getting me in trouble.
Royden Goodson: Just let me get my credit card out. So anyway at that point I realized I needed somebody to stay with her so I could take care of the basics of life. Somebody, you still have to go to the grocery store.
Absolutely. You still got to go to the cleaners. Yes. You just have to do that stuff. Yes. Anyway, it's okay, we're going to need, we're going to need some help.
Frankye Myers: Wow. How did you take care of yourself? 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, some of our questions, but I do think we, we don't always talk about that.
And this, that's a huge undertaking. Yeah.
Royden Goodson: The. One of the most important things that you have to do as a caregiver is understand the importance of self care. Yes. Yes. You have to keep your mind and your body healthy. Absolutely. And if something happened to me while I'm caring for Martha at home and I go down then I couldn't care for Martha.
Realizing that I needed to care for myself. I needed to build a team to let me be me.
Frankye Myers: 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 need, needs me the most won't have that, just like we do for our children, right?
We're raising them. We always say we just want to, we 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.
Royden Goodson: So you need to build a team.
Frankye Myers: Absolutely. Okay. But there's more to building the team.
Talk a little bit about that.
Royden Goodson: It's more than just hiring a babysitter.
Frankye Myers: Yes.
Royden Goodson: It just is. It's it's. I needed somebody to look after Martha, but I need, 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.
Absolutely. And I can enter Martha's reality, but I can't bring her back to me. 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 you, I couldn't stay there and I had to give my self permission to live the life that I had and do the things that brought me joy and allowed me to recharge.
Frankye Myers: Absolutely.
Royden Goodson: And You know the different circles to my life. I was a caregiver for Martha, but I was also a son to my dad.
Frankye Myers: Yes.
Royden Goodson: Father to my children. I have 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, I was like, I'm very raised to be independent. I got this.
Frankye Myers: Yeah, it's hard to, yeah, sometimes to ask for help.
Royden Goodson: Yeah, you're right.
So I needed to ask for help. So I need to learn how to do that.
Frankye Myers: Yes. Very good. What is the biggest What's the biggest barrier to building a team?
Royden Goodson: 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 there's just different things. And if you're looking at paid caregivers, then finances come into play. That's not inexpensive. But the biggest impediment would say is not accepting the reality of the diagnosis. Yes.
Yes. And denial in caregivers is fairly common. Yes. And it actually works in two ways. Some people think they can handle it on their own. Yes. Particularly people, like myself, been in the business world and used to, running the show and making decisions and in 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. In the disease will wake you up. When Martha was at home, I used to wake up at the sound of a bare foot on carpet. I just wasn't sleeping well. And that's not healthy.
No. You're always on alert, it sounds you cannot sustain that. Yes. 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.
Yes. And it's tempting to go on with your life hoping that your loved one is safe, that you 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 that's probably going to happen.
And when that does, your life spins completely out of control. And it's important to. to accept the reality of the disease. Yeah it's terrible, but it's not the end of the world. No, there's still life left.
Frankye Myers: Absolutely. That's powerful. Absolutely. How important, and this is just from my own I've, 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 it, does that come into play or are there things that could trigger them if they're used to having things done a certain way?
Royden Goodson: Frankly, I would say that is generally. True. Okay. But it depends on the personality. Okay. 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. Okay. Some people thrive in chaos.
Frankye Myers: Okay.
Royden Goodson: Okay, and if you try to fit them into a very orderly situation, they're going to push back on that.
Okay. So it goes both ways. You have to know the person that 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.
Frankye Myers: Wow.
Royden Goodson: She knew she wasn't home. And she, She didn't want it to look like home. No, didn't want it to look like home. And so we ended up taking out everything except sofa and a bed. That was about it. Wow. Yeah. Okay. And she adjusted to that. That was fine. Now other people have a different experience.
Frankye Myers: So it's not a one size fits all. Wow. But
Royden Goodson: when it comes to caregivers consistency helps. Yes. Yes. You find the ones, and Martha had people that she. Bonded with yes, 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,
Frankye Myers: right?
Royden Goodson: It's okay. I'll just sit on the front porch And then 15 minutes later, come back in the house. Oh, Gail. Good to see you.
Frankye Myers: I love it. I love it. I love it. I've had a time out, Gail. I'm okay with talking with you now. Okay. I love it. All right. 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?
Royden Goodson: Yeah. One of the big issues in, in dementia care is the balance between safety and independence. Yes. And when we're raising children, we're keeping them safe.
Frankye Myers: Yes.
Royden Goodson: 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. In dementia, it's working in reverse. Okay. They have this independence, now we're trying to keep them safe. But they're adults. Yes. And you might be able to get away with the child of telling them a hundred times, look before you cross the street.
Yes. 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, 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. Okay. 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 is disease. So they don't know. Now, Martha was in the half that knew.
Okay. 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. Wow. So that was nice. She was afraid she might get lost or hurt somebody.
And and when it came time to stop, she was fine. Long as I was willing to drive her.
Frankye Myers: Drive her where she want to go.
Royden Goodson: So she always preferred the safety side. My, my dad was a little different.
Frankye Myers: Did you have to hide the keys in your dad's situation?
Royden Goodson: If we hid the keys, he would find them.
He'd give me something made. It's just the way he was. Call the company out. Yes. And one day he made a mistake. He said, how you doing? And I said, dad, How you doing? , I'm concerned. He's you're concerned. What are you concerned about?
Dad, I'm concerned. As you've gotten a little older, your ability to drive might not be what it was.
He says you shouldn't be worried about that. He's okay, but I am
Frankye Myers: right.
Royden Goodson: All right 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 DMV actually won't be the caregiver.
Yeah, she comes home and he's I don't I did it he hadn't matched your 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, he's a great fellow. And somehow we talked to drive and the instructor is it's all, all good.
It's dad gone. Okay. But there's one more thing at that age is you have to get a note. from your doctor. So I called his Riverside primary care doctor and it's hey, Dr. Souther, I need a little help here. My dad driving to us, he says, is he still driving? It's yeah. And as a matter of fact, he's about to get his license renewed.
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 an anonymous, you can write a letter. They will keep it anonymous. And based on their age and the circumstances, they will step in.
And part of it is a vision test and it's, being able to recognize the street signs and that sort of thing. So anyway Dr. Souther took over and 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 no, I was just concerned.
Frankye Myers: So that's what worked.
Royden Goodson: That's what worked for dad.
Frankye Myers: 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. What about visits to the doctor and that routine?
Royden Goodson: That routine. At some point, as a caregiver, you have to decide when to stop going to the doctor. Okay. The whole question of, you care and hospice care. I think you probably had some podcasts on that. 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 9 1 1. Unfortunately, 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. Yes. 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?
Frankye Myers: That's a good point.
Royden Goodson: What if she has cancer? 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. Yes. 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. Make sure they know. Now 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. Yes. But whenever I took her to the orthopedic office, sometimes doctors will make you wait. Did you know
Frankye Myers: that? Oh yeah. Unfortunately I do. I don't get a pass either.
Royden Goodson: Yeah. I'm a nurse.
Frankye Myers: No professional courtesy in that aspect.
Royden Goodson: So I'd always do a dry run. 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 o'clock 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. Cause she liked to ride in the car. Yes. Yes.
She didn't like. And so they would send me a text and I'd get the park, car parked and up we would go and we'd do the exam and we were out of here. Yeah, so I thought it was just, whatever you can anticipate try to do.
Frankye Myers: 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.
Royden Goodson: Can I have two?
Frankye Myers: Yes, you can have three.
We'll take all the pearls we can get from you.
Royden Goodson: 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. Yes. So learn to flex and flow and enjoy the connection that you have with your loved one.
And then the second we talked about just some is taking care of yourself. Yes. 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.
I wrestled with that question. But I came to understand that God uniquely placed me here to be able to care for and love Martha.
Frankye Myers: Absolutely.
Royden Goodson: Many of us have different belief systems, and I'm not trying to tell anybody what to believe.
Frankye Myers: Yes, this is your story, absolutely. But
Royden Goodson: I believe that one day life is going to be restored for eternity.
Yes. With a healthy mind and a healthy body. And that means what I do now. matter.
Frankye Myers: Absolutely.
Royden Goodson: 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've been some difficult times, but for me to know that one, 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.
Frankye Myers: Absolutely. Absolutely. I would just like to thank you, Mr. Goodson, a. k. a. Royden. I like Royden.
For, 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 trusting us to on with your legacy. Okay. Thank you for joining us. Thank you. 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 at R I V H S.
Thank you for listening to this episode of Healthy You. 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.
