Alzheimer's and Dementia Caregivers

In this episode, we explore the challenges and triumphs of Alzheimer's and dementia caregivers. Hear personal stories, expert advice, and practical tips to support those caring for loved ones with these conditions. Join us for an insightful and heartfelt discussion on navigating the journey of caregiving.

Learn more at https://www.alz.org/cincinnati or call our 24/7 Helpline at 800-272-3900.

Transcript

Connie Gaylor: 0:12

Welcome back, listeners to the Smashing the Stigma podcast. My name is Connie Gaylor, and today we welcome back Dayna Richie, program director at the Alzheimer's Association of Greater Cincinnati and Miami Valley chapters for the final episode in the Alzheimer Dementia series. And I can't even believe we're at the final episode. Dana, um, just to provide a recap for our listeners who may not have listened to the series yet, please go back and listen to the previous podcast in this series, as Dana has provided so much good information in the discussions have been so good. Uh, just just so, you know, topics already discussed have been, uh, an introduction to dementia and Alzheimer's, ten warning signs of Alzheimer's, dementia and Alzheimer's communication and connection. And today we will be closing out the series talking about caregivers and grief. So, Dana, let's first talk about caregivers who is considered a caregiver.

Dayna Ritchey: 1:14

Yeah. So that probably seems pretty straightforward. But we get a lot of feedback when we have things like caregiver support groups or caregiver education. People think that a professional title that you have to be a paid caregiver that's meant for, you know, paid nurses, paid staff, paid aides. No. Um, and our vernacular, you don't have to be a professional, trained individual. In fact, the majority of the caregivers that we work with are average family members and friends, um, that unfortunately have a loved one in their life that is living with dementia and therefore they need some extra care. Um, so it a caregiver can really be anyone. It can be, um, Uh, people who haven't had a lot of formal training. And a lot of times we don't feel really prepared to do some of the things we're being asked for. So that's why it's important. If you are a caregiver or someone who has dementia, that you do seek out some of the research resources from the Alzheimer's Association to to help you feel better prepared for that.

Connie Gaylor: 2:27

Now, Dana, while I think I know what the role of a caregiver would be, would you tell us what what it entails? What does that really mean?

Dayna Ritchey: 2:35

Yeah. Um, you know, some of the things that a caregiver can do on any given day are maybe things you're actually doing when you are raising children as well. But but now you're providing that care to an adult. So they don't have to be big medical things. Um, they can be things like providing transportation or, you know, coordinating rides for your loved ones that may not feel comfortable driving, you know, after dark or in general, making sure they're buying their medications, helping them, maybe organize them. And in little pill boxes, you don't have to be the person that's giving them the medication. Even if you're just helping in that medication management, you that's a form of caregiving, helping a person manage their money, you know, make sure that their bills are paid, things of that nature, help them with preparing for tax appointments or getting their taxes done. If you're helping them prep for meals or make meals or organizing a meal service for them, that's a role of a caregiver. Of course, making medical appointments for them, attending medical appointments with them, monitoring any kind of medical conditions. Um, so, you know, they're they're having conversations with you about ailments maybe you weren't privy to before, but that can be the role of a caregiver. Um, getting professional health care providers involved and talking with them can be role of a caregiver and then just helping with, uh, what we call ADLs. So if you ever hear somebody say ADLs, that's activities of daily living. So activities of daily living for all of us are things like getting dressed, getting bathed, um, being able to eat, being able to toilet or use the restroom like all of those, um, typical things that a human being does. If you have a loved one who needs help with any of those things, um, you can be a caregiver. So it doesn't. You know, I didn't mention anything super specific to dementia. There's a lot of family caregivers out there that may have interest in what we're going to talk about today, that they don't necessarily have a loved one with dementia, but they may have some other physical considerations where they need additional help. Um, so any of those kinds of duties can make you a caregiver and you don't have to be paid. In fact, the majority of caregivers, even for people with dementia, are unpaid family and friends.

Connie Gaylor: 5:27

Yeah, I remember, um, I took care of my grandmother for a number of years. Even though she didn't live with me, she still lived in her home. But she really shouldn't have been, you know? So I went over daily and, you know, did things just like these ADLs, like what you're saying. But the longer she lived by herself there, uh, her needs changed. And then it became very apparent to me that there was going to be a point that, um, I couldn't do it all by myself anymore. Um, maybe that didn't necessarily mean she was at the point of moving into a, you know, facility. It just meant that, you know, I couldn't continue to be the sole caregiver for her. Right. Um, can you share with our listeners some changes that they may experience as a caregiver, especially for an individual, um, that they're caring for who is living with Alzheimer's and dementia?

Dayna Ritchey: 6:23

Yeah. Yeah. And, um, you know, something else around this is you don't always have to be in close physical proximity to this, to the person as well. So some families will divide up some of these responsibilities based on, you know, work, family life, geographical boundaries. Um, but you could be a caregiver to a family member, maybe helping them manage their bills and their banking. But you live states away. Um, and so sometimes that's a good way for families to kind of divide and conquer, you know? A lot of times if your loved one who needs supervision is a female, they prefer female family members to help them, vice versa with males. So you have to think about those types of things. But, you know, really changes you might experience as a person progresses in any kind of disease. But definitely we know with Alzheimer's, dementia there is a progression. And so it could start with, you know, just helping out a little with chores, you know, like my my mother, just as she age, she would be cleaning out her own gutters and my husband would just get on her about, hey, you're 75. You don't need to be up on a ladder. Call me and I'll come do that. And she was totally physically capable, and we weren't concerned about any kind of cognitive issue at the time. But of course, as we get older, we'd like some help with some of those more typical things, you know? Then, as we realize she was having cognitive issues. We did have to take on more serious responsibilities, right? Like, we did have to employ our power of attorney documents to help her with her finances and, um, you know, moving money around and bank accounts to pay for things. We did have to help her bathe and help her dress. And, you know, all those things that we had to get really involved with before we even moved her into memory care, because we were trying to keep her as independent as possible. So the the roles can range, you know, and we kind of moved out of our roles as daughters into our full time caregiver roles. Like, we really didn't even realize that you just take it on because your family or a close friend. Um, but we really had kind of become like these unprofessional nurses. And, and so it's a big transition. When we moved mom into memory care community and we moved her really for her safety. She was starting to fall more and it was more of a safety risk. And so, um, you know, we really had to learn and they had to help us, uh, remind us, the staff in her senior living community, we're daughters. We can give up some of these caregiving roles that we had taken on now to them as professionals. And we could go back to being daughters and not having to be the bathers. And, you know, the the food preparers and all those kinds of things. Um, so what you can kind of do is, as you're thinking about, you know, if you if you have a loved one, even just an aging loved one that's fully healthy right now, but having conversations about future, you know, the future and putting some plans in place even before a diagnosis or soon after a diagnosis. You know, just having that kind of conversation about Out. Who? Who would you want to help you? Who would you want to take care of? You. You know, my mother in law died of cancer. She died very quickly of cancer, but she was cognitively available. But she had two sons, and she was very clear that she didn't want her sons to get involved in the ADL part of it at all. So she was able to say that versus, you know, other people may not have that much of an issue with that. So having those kinds of conversations, sometimes the easier way to bring it up is if you are aware of other people that are going through this, you know, if you, your, your parents know of other people whose children are having to get involved, you know, that's a good segue to, you know what? If something unexpected happened to you guys, you know, who would you feel comfortable with? It may be that they want a professional person because they don't want those roles to have to change, but they may feel more comfortable with family members than professionals. Um, so you will notice these relationship changes, like I said then, because as you're taking on more caregiving types of roles, sometimes you're not feeling like the family member you used to be. Um, when my mom was well into her dementia. But she would say to me sometimes, uh, which one of us is the daughter and which one of us is the mother anyway? And I always knew that meant I was getting bossy. It was best to handle my mom with humor, so I would answer and say, well, it depends. Right now in your life, we are taking turns and I am the mother in this moment. But I promise to relinquish you. Relinquish that to you as soon as we get our clothes on. Then you can be the mom again, and I'll be the daughter again. But, um, you know, you will expect those relationship changes. And especially, you know, my situation, I was dealing with parents and it is this whole role reversal. And I'm sure with spouses, you know, we almost feel like we're turning into parents of our spouse versus a partner. And that can be difficult, um, and unexpected sometimes. And we feel unprepared in that. Um, and then, you know, that also can lead to intimacy changes because it's you may not have the same emotions or physical attractions if it's your spouse to someone who's living with dementia. And that can be a little hard to navigate, because sometimes a person with dementia has a heightened, um, sexual arousal, uh, that, that is caused by the brain. And so you really kind of have to figure out that piece of it as well. And that can be something unexpected for spouses, uh, And changes that are happening from dementia. So but there can be new ways to find intimacy. You know, with my mother just holding her hand or rubbing her back or scratching her back, you know, any kind of physical contact, right? Yeah. She just it meant so much to her. Um, we had another daughter talk about how she would brush her mom's hair. Yeah, she would just brush her hair and she would style it different ways, and they could just spend a long time just with a comb and a brush. And how good that felt to her mother, but how special it was to both of them. Uh, because she remembered, you know, her mom doing that with her. With her, um, listening to music together, especially if it's music that you realize, you know, if your loved one has dementia, music you realize was was important or special to them, like from their wedding or favorite songs from their high school. But even if your loved one doesn't have dementia, you know, going back into some of those songs that were special to them, that those are great ways to bring up old memories, to learn new things about your loved one. So even though the rules are changing and there's some challenging pieces to it, um, you know, it can still be really rich in the relationship you have with with your loved one from time to time and, and special moments. You know, my husband has cousins and their mother's very late into dementia. And the one of the cousins was just sharing with me one day, uh, her mom just grabbed her hand and started praying for her, and she said it was unbelievable. It was my mom. It was who I had always known. And so unexpected because she's not been the best at communicating recently. So that is the richness of staying involved with somebody, even in those later stages. Every once in a while there's this unbelievable connection that seems so small and simple, but it's overwhelming, you know, that we can see our loved ones still.

Connie Gaylor: 14:57

I think I had shared in a previous podcast about a friend whose mom still knew that she they were a mother daughter relationship, but hadn't spoken her name in a long time. And then just out of the blue, called her by name and it just floored her, you know? And you know, I think those are just those sweet moments that God gives us to help us as caregivers, to still feel that connection, you know, because in the next breath, her mom had went, you know, it's just like a fleeting moment. But then she was back to kind of how it was before. Um, you know, but, you know, I do feel like it's things like that, you know, and you've talked about how sometimes with people with Alzheimer's, dementia, they remember themselves from decades ago, right? And so this same friend talked about having music that they had downloaded for her mom that when she got really agitated or upset, especially, she was trying to take a trip by a car. They would play the music from, like you said, from high school or from whatever, and it would calm her down because all of a sudden that music reminded her, or it was where her mind was already at, and it calmed her down. Yeah. So within these relationships, it's finding those things, you know, to help with that connection and and just to calm them, you know, both people. Exactly. The caregiver and the.

Dayna Ritchey: 16:30

Exact.

Connie Gaylor: 16:31

Person.

Dayna Ritchey: 16:32

Yeah.

Connie Gaylor: 16:32

You know, um, I've read something about and I read this on the website, um, about the person centered approach to care. Would you explain that to our listeners?

Dayna Ritchey: 16:45

Yeah. Well, actually, some of the things we were just talking about, um, is the person centered approach to care. So it's, uh, it's almost so obvious that it's shocking and something we have to talk about. But but we do, uh, because there's no one size fits all in how you care for a loved one, especially when there's cognitive impairment. Because, as you were saying, Connie, some of us are in different decades. Um, music is helpful for a lot of people. But when my mom moved into senior living, there was a resident there that hated music and would throw tantrums when they would play music. So it's it's a very individualized disease. And although some of the medical things might be the same approach. It's providing joy and quality care to your loved one and making that person centered. Um, you know, I always give the example about my husband because my husband's tall and he looks athletic, and I have told him this, you know, when I go out and do training and senior living, I always say, if my husband shows up here and you think you're going to sit him down in front of sports because he has dementia in the, you know, hopefully he never does. But if that ever happens, you're going to look at him and think, that man will watch basketball or that man will want to watch baseball. My husband hates sports. He doesn't hate them, but he that's not of interest to him at all. I mean, throughout his entire life, he's never sat and watched an entire game of any kind on television. So there's no reason to believe he's going to do that if he has dementia or even if he doesn't and he's 80 years old, he's not going to care about that, right? But we make those kinds of assumptions. Oh, we'll put all the men in one room and we'll put on the Super Bowl. You know, some of them don't care about that, and some of them maybe can't follow that anymore. So it has to be very specific. Like you said, specific songs that mean something to someone. Um, and it has to be really reliant on what the family knows about this person, especially who the person was before they ever had the disease. What were their likes? What were their dislikes? What were things? What were their hobbies? What were they passionate about? What were their favorite meals? What were foods they never ate? You know, my mom had some run in with a chicken at some point, and she never cooked chicken. We never had chicken in our house. She never ate chicken. She wasn't going to eat chicken in her dementia. When she heard the word chicken, she would say she didn't doesn't want it. Yeah. Even in her dimension.

Connie Gaylor: 19:34

Yeah.

Dayna Ritchey: 19:35

And sometimes I think they snuck it in on her, but, um, they. She knew it was chicken. She wasn't going to eat it. So, you know, that's person centered care, right? Taking what you know about this person and what you've known about them for the last 50, 60, 70 years, if you can pull that together and provide them high quality activities and, and environment based on their likes and their dislikes.

Connie Gaylor: 20:00

And that makes a lot of sense because, um, as a caregiver, especially an untrained caregiver, which was really the focus of a lot of what we're talking about, um, I feel like you're just kind of winging it. Yeah. You know, like, you don't have a lot of confidence necessarily, because you don't have the training behind it. So you are only doing what you know of that person before to try to do again. You know. So and I think that's scary in some ways. Because you know what? If you do something that has some kind of a residual effect, you know, you don't have the confidence in knowing that that's the right thing to do. You just know your person.

Dayna Ritchey: 20:42

Yeah. You do. And, you know, things in a person can change. They'll go through phases. You know, my mom just wanted to listen to Willie Nelson music for six months straight. That's all we could play. And then one day, she said, I don't want to listen to that out of nowhere. Yeah. And we we had to try all kinds of things to figure out who the new group was or person was that she wanted to listen to, you know, the, the terrible thing about dementia, Alzheimer's. Um, but the hopeful thing also is we do have short term memory loss. So as a family member, as a caregiver, when we try something that doesn't work well, we need to stop. We stop. We need to reverse. We need to walk away from that. You know, erase it from the board. Uh, you know, move to something that we know, uh, a person likes. Or, you know, if they're in a room and they're safe, walk out of the room. Take take ten minutes out of their sight. Come back in. Try a whole new approach. Um. That's the. The terrible gift of Alzheimer's is we can get a lot of attempts at doing the right thing. And then once we figure out what's the right thing for today, that may potentially be the right thing for the next couple of days, next couple weeks, next couple of months. Um, but when you do try, I've tried many things. I thought my mom's going to love this, and she had no interest or she had an opposite impact. You just abort, abort, abort. And, you know, go about a new tactic and try again. You get lots of chances.

Connie Gaylor: 22:26

Yeah. Which is kind of what we were I was going to ask you about, but I think you've kind of touched on a lot of them is just different. You know, you've had so much experience with this just based on is there different strategies or tips that really can just improve on a caregiver's relationship with the individual or just the way they, you know, they go about with their care?

Dayna Ritchey: 22:51

Yeah. Um, well, the first tip we've talked about, you know, use your knowledge about the person, the whole person, and even for my sister and I that were the main daily caregivers to my mom, you know, we talked to her sister about things from childhood that she knew about mom that she might be interested in, um, even things like in our situation where we were the children, what were things that mom did for us that were special to her? Right. Like, as parents, not every parent's out baking cookies with their kids like that must have been a special thing that my mom wanted to do with her children was because we did a lot of baking, so we knew that was something she was involved in there. We had like favorite stories that she always read to us. And I mean, yes, sometimes now we get stuck in reading kids stories that we hate, but the kids love. But, you know, I pulled some of those out and, um, you know, don't try to erase the word. Remember that that can be a little, uh, you know, a bit of a torture test to somebody who's not going to remember, um, but. So I would just pull it out, like I found this great book about dogs or about flowers, and, you know, you want to look through it together. Um, so any kind of knowledge about the, the person from the past, um, even, like I said, if it was a role reversal situation, it might have meant something to them. Stories that I remember. Every family gathering. Somebody shared the story, you know. So I would share the story with my mom, and sometimes I would tell her it was her. And sometimes when she didn't, that upset her. She remember that. I would just say, I heard this story about these siblings. And sometimes she she'll always laugh about it. Sometimes she'll say, that was me. But sometimes she would just laugh about it. So that kind of, you know, how do we connect in the moment of the situation? Um, I found you're talking about car rides. I found when I was driving my mom to church. That's always when she wanted to talk about politics. And at the time, she was really motivated in a different direction than I was. And it was frustrating for me to hear her get on her soapbox. And so I figured out in these moments, that's what I had to have certain CDs ready to go of certain music. Um, so I knew kind of moment to moment, you know, if you can anticipate where we were going to a doctor's office and we may have to wait a long period of time. And my loved ones very impatient right now, you know, have some preparation about what we can do in those moments so that they don't have as much, um, you know, struggle, agitation, stress, those types of things, help the person take part in meaningful activities. Uh, as my mom did get more into her decline and she couldn't participate as much in the baking, we still found meaningful things for her to do. Even, you know, one time just sitting at the kitchen table when we talked to her and, you know, but she was still there with all of us while we were doing our holiday baking. Focus on the relationship that you have with the person you know. I actually went back for a time and I will call my mom mommy because she seems like she was in that era. Yeah. Um, and so my sister always called her mother, and I always called her mom. But I, you know, even just kept focusing on that relationship and that intimacy that we had had. And then the last thing is just create a supportive environment for the person that that can provide them some meaning and some purpose. You know, so if if your loved one is never had an interest in church or anything related to that, you know, probably putting in an environment with a bunch of old hymns may not be a supportive environment to them. Right. Um, we always kind of hear those types of things. A lot of times when you're in senior living communities. But that doesn't speak to all of us, right? So what's what is a supportive environment for your person. You know, I know people that they have 700 on all the time, right? Just in the background, nobody even necessarily listening. It's just the word. It's just the voices back there. Well, then let's. Why does that have to stop? Like, if that's the background of our life, let's put that on. So any kind of environment that supports your individual and their hobbies and their joys and their loves, you know that those are great tips.

Connie Gaylor: 27:49

Well, thanks for that. I like that when you give, when you share these kinds of strategies, you give examples that we may not think about. Um, and sometimes we think about things that are comforting us and not necessarily the person who's living with Alzheimer's and dementia. Yeah. Um, because we think if it calms us, it's going to calm them. But but that's not necessarily true. So I'm glad that you made those points so that we're reminded of how how to best approach this. You know.

Dayna Ritchey: 28:22

It is hard. It's you know, especially around big events like weddings, holidays. There is a little bit of therapy. A lot of times our family caregivers have to go through because there will, you know, what is it that you want ultimately, and then what's really best for your loved one, right. Right. You know, sitting through a full day wedding, even though you would like to have that person present and the people getting married probably would. Yeah. You know that by hour three, there could be some really negative impacts that nobody really wants. Right. Um, but so yes, we understand if it was ideal, they would still be participating in everything the same way. We still have all our holiday rituals the same way. And so that coming to the reality of what you were talking about. My needs, what I really want. If I could turn back time. Versus how can I still have them involved in some way that's special but still meets their needs, is not overloading to them and is not, um, you know, a problem for for them to, to really participate in a dignified way.

Connie Gaylor: 29:33

Right. No, I totally agree. Um, because it it is it's just so hard on on all levels. And, you know, thinking about the caregiver, you know, you had your sister. Um, sometimes people are just kind of a one man show trying to handle everything. And they get to the point of burnout. Yes. So what can we, um. How can somebody go about just preventing burnout? What are some what's something that you would you would suggest for them to do?

Dayna Ritchey: 30:08

Yeah, definitely. Well, it is important to have a team, and I was very fortunate that I had a sibling and that this was something we were fully on the same page together. Um, there's lots of people that have siblings and that's not the case, right? Um, so we were really able to be true partners and divide and conquer. But even if you don't have that luxury to understand that, that you still need a team, not only does the person who needs the care giving, the care receiver needs a team of people because they're going to get sick of you. I mean, my mom got sick of my face. It was nice to see a different person's face every once in a while. But also, um, I needed the team, right? My sister needed a support team, and it couldn't always just be the two of us supporting each other either. So that team approach is really important. And so you need to think about who could be on my team. And it may change over time, but some people will say, oh, my loved one won't. They won't know anybody but me, and nobody else can help with my loved ones specifically. Okay, that that may be true in some cases, but you are likely trying to take care of someone at the same time that you had all these other responsibilities like who's making your meals? Who's going to the grocery store for you, who's mowing your lawn, who's, you know, doing all these other things that actually have nothing to do with your loved one who could be on your team, then. Yeah. You know, your team may be the Kroger delivery driver, right?

Connie Gaylor: 31:45

Like you're.

Dayna Ritchey: 31:45

Just.

Connie Gaylor: 31:46

Giving.

Dayna Ritchey: 31:47

Giving up some things you used to do on your own. And it may even be strangers. But let's figure out how that Kroger delivery thing works, right? So that we know how to employ that. How do I what is appropriate for telehealth versus in-person? You know what doctors offer that? Obviously you can't telehealth to a dentist appointment. But what are some other things that, you know, you can get a team? And we always think of, like I said, just intimate family members. But sometimes your your team is, you know, I employed a lawn man. Now, you know, they're strangers. They can be volunteers and, um, you know, faith based organizations or other nonprofits that are focused on seniors or, um, mental health or, you know, specific illnesses. And it helps if you are working with if you have people that are working with your on your team, so to speak, you know, understand you. Do you have experience with dementia? Do you feel comfortable being with my mom and helping her with some things? Because again, if they don't, you know, don't take that personally. There's still ways they can help. Yeah. Um, you might be surprised. You might have a neighbor that you find out they cared for their mother before you ever knew them. And there they are actually really capable of being on your team. Sometimes your support team is just strangers, you know, a therapist that you can just talk to, uh, or a willing ear at the YMCA that you work out beside, you know. So your team, you got to have a team and you've got to think about all the ways a person can help you or your loved one to, to support. Because like you said, it's 24 over seven. You're caring for a grown adult in addition to yourself, and it's way too much for one person.

Connie Gaylor: 33:38

It is a lot. And you know, this goes for anybody who's a caregiver. It doesn't mean it has to. And we thought you said it at the beginning. It doesn't mean that it has. It only relates to somebody who's caregiving for somebody with dementia and Alzheimer's. For my grandmother, it was a lot of physical things, you know, because of the physical difficulties and some of the things it did take her into dementia in her last, you know, couple years, but I remember not really having a team at that time. I didn't really think about that. And my grandmother was very private, so she didn't want a lot of people in the house. You know, there was one lady that she did trust. My grandmother never drove. She never had her license. So this lady was a neighbor. She would come and get her out, you know, one day a week. But she herself was older. Um, so I couldn't ask a lot of her, you know, so balancing that, uh, raising kids, working a full time job, it got to the point where my stress level was, was, you know, through the ceiling. Absolutely. Um, and you don't want that to affect the relationship with your loved one because they're already in in a condition that, you know, is, is possibly nearing the end of their life. Maybe. So you don't want those last few years to be that way, right? I didn't see some of the warning signs because I was just internalizing them. What would you say in your experience and what you, you know, through this are warning signs of caregiver stress leading to burnout?

Dayna Ritchey: 35:12

Yeah, well, definitely. Some things to look for are denial, you know, denial of of how severe the situation is or how much you've given up, you know, for your loved one. Um, maybe a friend calls and asks you for lunch and you literally can't figure out how to make that happen, you know, and you've never realized how much this is taking over your life. You've been in denial of that. Anger definitely is common because you're you're likely you've upended your life in some situations. You know, I moved back into the state of Ohio from Arkansas when my mom was Been diagnosed with dementia. And, you know, I didn't have children, but I could have upended their life, too, if I did. And so there can be lots of anger involved. You may just want to withdraw socially. And that's again common for all kinds of things. Um, when you're going through grief or stress, you just it's hard to feel like it's appropriate to go out to lunch and laugh with your friends, right? Um, or that, you know, I love those ladies, but they don't understand what I'm going through. Um, and so you want to withdraw because you start to feel like, well, they're just talking about frivolous things, you know, even though those are all the things you love to talk about in the past, you can be really anxious. Um, so my husband and I were just talking recently when we moved back from Arkansas. I started to get Anxiety attacks in the morning, and I never really had those before. And it was because of this. It was because of where I knew where we were going with my mom and her journey. And so I started getting, like, panic attacks in the mornings. Um, depression can be very common. Exhaustion. Of course, you can have problem sleeping, um, because of your caregiving. You can be very irritable. Um, my my mother in law cared for her husband, who had frontotemporal dementia. She was just a joyous, fun person. But 24 over seven caregiving really changed her personality. And after he passed, it took her years to kind of turn around. Um, but she became really irritable and really negative. And that was never her, um, to that extent at least. And, you know, that was something all the families started to notice, even in just phone conversations with her sometimes lack of focus. I have a lot of caregivers that will ask me about that. When they have family members who have dementia, they think that that is actually a sign of them getting dementia because they can't focus or they can't remember things. But again, under extreme stress, we have those problems. And then just general health problems. You know, we can put on weight. We can lose a lot of weight. We can have blurred vision. We can have much more bowel and stomach irritations. Definitely high blood pressure, of course. Um, and like I said, that sleeplessness can be a big issue for someone who's under caregiver stress. Any kind of stress, really. But I think we just if you were under like a big project or if you were growing a baby in your tummy, like we all know, that stuff's stressful. You don't think about it so much when it's like, yeah, I gotta help my mom out a little bit more now, or I gotta supervise my husband a little bit more. Like that's all going to lead to a higher level of stress.

Connie Gaylor: 39:01

Yeah. And you know, and you think when you think about all that, you think, well, I can manage that. I have I'm, you know, I have common sense. I will know what to do and I will know how to handle it, but yet we don't. Yeah. Um, so what are some good reminders for caregivers so that so that they try to be, um, you know, cognizant of things that are changing within themselves? What can they do?

Dayna Ritchey: 39:30

Well, definitely, when you go to your keep your doctor's appointments, right. We all need our annual wellness exam. When you go to your wellness exam, tell your doctor about your family situation. They need to know about this additional stress. They need to be empathetic, and they need to maybe be monitoring some things that they haven't monitored as much in the past, but you need to talk to your doctor about that. And sometimes, you know, your physicians also have some great advice. You know, with my father in law, we ended up telling our doctor, my husband and I were together and we went to our family doctor for an illness I had, and she ended up telling us about hospice for my father in law. Um, even though he was months and months away from from death. Uh, so definitely your physician. And, you know, just being trusting and open and honest with your physician is a positive thing to do, a positive thing to do when you're a caregiver. Finding some relaxation techniques. You know, everybody has a different thing. It doesn't have to be meditation. It doesn't have to be tai chi. It doesn't have to be yoga.

Connie Gaylor: 40:40

Or journaling.

Dayna Ritchey: 40:41

Or journaling. Yes. Um, if I try to meditate, I fall asleep. There's like, no in between. I'm either all the voices in the head or sleep.

Connie Gaylor: 40:49

Yeah.

Dayna Ritchey: 40:49

Nothing else happens in between, so that's more frustrating to me. Like when I tried that, that was more frustrating for me. It was taking a walk. That was my relaxation. Relaxation. There was some days I got out my boxing gloves and, you know, we went to like kickboxing. We had to get aggression out. Um, so you kind of have to know what's best for you. Not everybody's going to want to do the same things, but having some kind of relaxation technique, um, you know, whether that's physical exercise, mental, um, exercise, listening to your own favorite music for once, all those kinds of things. Make sure you're taking a break. Um, with my mom, um, sometimes they were just bathroom breaks. I probably said this months ago, but every once in a while I get so frustrated and really not know what to do that I was like, I'm sorry, mom. I hold on a second. I gotta go to the bathroom. Yeah. And I was rarely using the bathroom. I was in there their deep breathing, sometimes calling my sister, sometimes praying, sometimes thinking like, okay, what else can I say? You know, just talking to myself. And there would be visits, you know, within an hour I was in the bathroom three times. And again, the gift of Alzheimer's is she never thought that seemed odd to her. Um, but taking even just these little tiny breaks can be really helpful. And then just getting help, you know, again, we've talked about the Alzheimer's Association has care consultants, we have support groups. Some people find help in talking to a professional care consultant and getting a care plan and getting armed with some resources. Some people find help in speaking to others that are on the exact same path that they are on. Um, that, you know, are just average sons and daughters and spouses. Um, and they, they find help that way. Some people need all of it. So reaching out for help is the best thing you can do. Like you said, not only for yourself but for your loved one. Because you'll be a better caregiver if you're taking care of yourself.

Connie Gaylor: 42:53

Yeah, I totally agree with that. Um, I hate to see this end. I do. Um, this has been such another great discussion. Um, you just share so many good life stories that make it so relatable and, um, you know, and that's what makes these podcasts, I think, so real to our listeners. Um, but I don't want to leave anything unaddressed. And while I want to be sensitive to our listeners, I do feel like we need to talk about grief.

Dayna Ritchey: 43:26

Yeah.

Connie Gaylor: 43:27

You know, because at some point, we all are going to grieve in some way over something. Um, but I feel like the just the journey that you're on with Alzheimer's and dementia is, is different in some ways. Um, and you've went through it with your mom and your father in law. So what would you like to share about that?

Dayna Ritchey: 43:48

Yeah, I think, you know, the typical person thinks grief happens after death. So we only use that emotion when someone's passed and we don't recognize or realize grief is mourning the loss not of just someone, but something. So for a lot of us that are family members of someone who has dementia, the grief happens with the diagnosis or the realization that we are struggling with dementia related issues. So the grief can start years before a person passes. I mean, there are people who have Alzheimer's more than 20 years. Um, and so it's that recognition that you are in a stage of grief before long before a person dies. You're grieving who they used to be, who they, who you need right now. You know, um, the future. That you may not have all those kinds of things. It's important for you to recognize that and to give yourself that grace of, um, you know, grief. So the same grace you would give a friend who just physically lost a loved one. You know, their spouse actually died. You need to be able to give that same kind of grace to yourself because your your loved ones still here. And body.

Connie Gaylor: 45:16

Yes.

Dayna Ritchey: 45:17

But who? They are you. Unfortunately, you're kind of slowly losing that like we talked about relationship changes. You know, I we lost our mom long before her physical body was gone, right? Um, and I've heard people say, you know, other things are happening to you outside your life at the same time. And I've heard people say right now is when I would call my mom to get, you know, help from her or just emotional support from her. But who I need to call my mom about is my mom. You know, that's. And that's really difficult, that it's like I said, I probably shared in the past like I went had to go back to counseling when my mom started in her dementia because the era that she landed in from her past was one of the more difficult eras of our life. And so all these things were getting dredged up, um, and just, you know, even having to grieve all the things that happened back then. So it was it's very difficult to really understand that the grief is beyond just a physical loss. There's there's also something called anticipatory grief. So your loved 1st May be very early stages need very little supervision. You know, the same person for the most part that they've always been. But you can still face that grief emotion because you're anticipating. Yeah. You know, we're all unless you've been living under a rock for the last five years, we're all kind of aware of what this journey might look like. And so you can have grief from just that anticipation of something that's not even happened yet, but just knowing that that that will be the journey that you face. So we really want to make sure, you know, we have great resources for current caregivers, and we understand some of those things for current caregivers. But we also want to make sure they understand resources that can help them in the grief process, too. So there's a lot of grief support groups through hospice agencies. Even if your loved one didn't die through a specific hospice agency, most of them are very open to anyone who's grieving physical loss of someone. Um, there's also a great national organization that's called Grief Share. Um, and they usually have lots of different grief support groups. And if you go to griefshare. Org, you can put in your zip code and find grief support groups around you. And again, you know some of them, you might even call and say, my physical person is still here, but they can't even speak anymore. And they may say that it's fully appropriate for you to even join some of their groups, because again, it's not just loss of the physical person, it's loss of the entire person as they have been.

Connie Gaylor: 48:06

Yeah. No. That's good. Um, and and thank you for sharing about Griefshare. I had recently just been searching for some resources for somebody, um, and seeing their website and looked at that. Um, and just a reminder to our listeners, we, we have done a full series on grief that's also on our Smashing the Stigma podcast channel. So check that out if you're interested in that. Uh, Dana, I want to give you one more opportunity to share your contact information and and any closing thoughts that you have.

Dayna Ritchey: 48:39

Yeah. Well, first, I definitely want to thank the city of Montgomery and of course you, Connie, for the relationship we've had that you invited the association to be a part of this great podcast on smashing stigma. Um, I think it's very important that all our agencies are involved in mental health. And as we said from the beginning, you know, dementia itself is a physical brain disease, but it does impact mental health of the person with the disease and the care partners and the family members. And so I really appreciate that you thought of us for this podcast. One of our biggest barriers to getting people the help and support they need is just this lack of awareness that the Alzheimer's Association Association provides all this kind of support, you know, somebody had said to me, like, you really had never heard of the Alzheimer's Association when your mom was dealing with this. And if I had, it was just in fundraising, which is important. Where the largest nonprofit funder of research for dementia across the world. Um, we are looking actively for cures and treatments to this disease. And so that's important. But a lot of people don't know that those funds also go to provide free education programs, free support groups for families, those care consultations we talked about where you can get help in care planning, some individualized education and just emotional support through the Alzheimer's Association. And and that we also serve all types of dementia, all types of cognitive impairment. It's not just Alzheimer's that we serve. Um, also, our educational topics are some of the things we've talked about here. We definitely have topics around caregiving and communicating and handling difficult behavioral situations and things like that. But we do a lot of education around keeping your brain healthy for active seniors. Um, for folks like me, you know, that were in their 40s and didn't really understand the difference between normal aging and something that is more concerning. You know, we have a great program where we educate folks on that. So the best way that you can reach us, because I'm hoping, um, people beyond just Cincinnati are listening to this podcast. We do have our national 24 over seven helpline, and we always want to mention, uh, that's an 800 number and it's 800 272 3900. So it's nationwide. You can call that number? We also have an amazing website. It's a Z, as in zebra. So, um, you know, abbreviation of Alzheimer's, a.org. Um, so there's great resources there. If you are on the website or you call our helpline and you want to learn about education programs in your local area, they can connect you to your local chapter. If you are outside the Cincinnati Dayton area. Uh, we always need people to host educational programs for us or support groups. So if you want to be a host site, let us know about that. If you want to volunteer with us, let us know about that. We need people who will lead education programs, will, um, facilitate support groups. All you know, it takes a village to help us what we do as well. So, um, you know, those are all ways you can get involved. And of course, I mentioned fundraising, so a great way to honor or remember a loved one who had dementia is to join one of our walks to end Alzheimer's. They usually take place in the late summer or fall time. The Walk to End Alzheimer's is the world's largest fundraiser to fight dementia. And so you'll be joined with lots of other people in the fight when you go to these physical walks. They're held annually in more than 600 communities nationwide. And our whole purpose there is to raise awareness of this disease as we walk through the city with our purple. And our promise garden flowers. And then, of course, we're looking to fund dementia care support and research, um, to end this disease so many people don't know. Like I said, that the Alzheimer's Association is actually the world's largest nonprofit funder of Alzheimer's and dementia research. And so a way you can get involved with that is to join in your local walk. Either physically just show up and see what it's all about, or start a walk team and raise money to help us in our research.

Connie Gaylor: 53:35

And I actually did get on and and looked at the website. There's a walk in in May. Today's May 1st in Mason. And then there's another one coming up I seen that was in October I think so. Um, you know, so yeah, I think that's a fun way and a great way to honor loved ones, help raise money. You know, it's all for a good cause.

Dayna Ritchey: 53:57

Yeah. If you're in the greater Cincinnati area, one of the biggest walks is in Sawyer Point. It's actually the 15th largest walk in the nation of 600 walks. Um, and so your point is always the first Saturday in October.

Connie Gaylor: 54:11

Okay. Maybe that's the one that I see in October.

Dayna Ritchey: 54:13

But there is a great one in Mason. Yeah, that's in the fall as well. That's a pretty large one.

Connie Gaylor: 54:20

Okay, well, maybe that wasn't the fall I thought I seen it was in May, but.

Dayna Ritchey: 54:23

Yeah, I mean there there's always things happening in support of the Alzheimer's Association or other organizations that might be dementia focused. But yeah, I get involved, um, you know, and help raise awareness of what we do.

Connie Gaylor: 54:36

Absolutely. Well, I'm going to extend an open invitation for anytime you want to come back. If there's anything new that develops that we want to share, you're always welcome here. Thank you. Um, we just appreciate you so much. And thank you for spending a lot of your time coming and helping to educate and inform. And, um, it's just been a real pleasure for us. So thank you to our listeners who've tuned in for this series on dementia and Alzheimer's. We hope it has provided valuable information to you. We hope that you also listen to our other podcasts on the Smashing the Stigma podcast station. Until next time, be well.