Family Resilience in the Face of Dementia: Stories of Hope with Sandra Kiser

Our latest episode shares the touching story of Sandra Kaiser, an Alzheimer's advocate and caregiver. Her experiences with family members facing dementia reveal the unexpected blessings and challenges of caregiving. Sandra shares her poignant story of supporting her mother, brother, aunt, and uncles through their struggles, emphasizing the power of family resilience and the importance of community in times of need. Alongside touching anecdotes, discusses the genetic nature of Alzheimer's, adding depth to our understanding of this complex disease. Sandra's dedication to advocacy shines through as she discusses her plans to establish a non-profit in her family's honor, fostering education and support within communities.

Listeners will find inspiration in Sandra's reflections on documenting family memories, where the bittersweet moments of caregiving bring cherished childhood stories to light. As she recounts humorous exchanges with her brother and her mother's vivid recollections, we are reminded of the laughter and nostalgia intertwined with the caregiving journey. This episode also underscores the vital role of community support, advocating for open conversations about Alzheimer's to reduce fear and stigma. Sandra's insights provide a powerful reminder to focus on what truly matters, embrace the support of others, and live each day without regrets, trusting in a higher power along the way.

Chapters

• 0:16 Meet Sandra Kaiser: Advocate and Author
• 1:31 Sandra's Personal Caregiving Journey
• 7:02 Documenting Family Memories in Alzheimer's Care
• 13:28 Challenges and Surprises in Caregiving
• 18:58 Embracing Community in Caregiving
• 22:40 Final Thoughts and Resources

Transcript

[00:00:00] Rayna Neises: Welcome. This is Rayna Neises your host of A Season of Caring Podcast, we share stories of hope with family caregivers, breaking through the busyness and loneliness of caregiving to see God even in the middle of the season. I'm excited to introduce you today to Sandra Kaiser. She's an experienced marketing professional, author and Alzheimer's advocate who volunteers with the North and Central Chapter of the Alzheimer's Association.

[00:00:28] Sandra has written two publications on Alzheimer's that is helping to eliminate fear by educating, increasing awareness, and empowering our communities. She's written two books on Alzheimer's Mysterious Wonderment: When Alzheimer's Disease Becomes Your Word of the Day, and a children's book, The Amazing Adventure of the Jolly Heart Squad, which was written to educate youth about the disease.

[00:00:53] Sandra has 15 years of volunteer experience, and seven of those have focused on advocacy work with the Alzheimer's Association. One of her many plans to continue advocacy work is to establish a nonprofit to honor her mom and her brother's legacy. She enjoys reading, writing, listening to music, spending time with family and friends, and watching the sunrise over the ocean. 

[00:01:16] Welcome, Sandra. I'm so glad to have you here today.

[00:01:18] Sandra Kiser: Thank you. I'm glad to be here. Thank you for the invitation.

[00:01:21] Rayna Neises: tell us a little bit about, I know you have both your mom and your brother you served as a caregiver for them. Tell us a little bit about them and their journeys.

[00:01:30] Sandra Kiser: Sure. So, when I first moved to Orlando in 2001, I had the opportunity to watch my aunt walk through the Alzheimer's journey. And little did I know, 10 years later in 2011, that was when my mom was diagnosed. So for the first Three or four years, I traveled back and forth from Orlando to Montgomery to help with her care.

[00:01:56] And then I made a decision, a couple years before she passed that I was going to relocate because it would be easier. I would, use FMLA to take time, take a couple weeks and go and help out my siblings. But that began to be a little bit challenging. And I saw her decline. So I decided to move home to make things easier.

[00:02:17] And fortunately for me, the company that I worked with at the time kept me on. So I was able to work remotely. And then, during my mom's journey, we learned that one of my brothers was diagnosed with early onset. So while being there to help with her care, I was also able to help my sister in law with his care.

[00:02:39] So I always say that the journey with my aunt, even though I helped out more like moral support for my uncle and my siblings, that that was my preparatory stage for me for what was to come, even though I didn't know that I would be walking that same journey with my mom. And then, um, also in between time, between my mom's Passing and my brother's passing.

[00:03:05] We also had two uncles, my mom's brothers who also had Alzheimer's. One had Alzheimer's, the other had vascular dementia. But, that was a blessing just to be able to go home and help with their care. She was still able to, during the trips back and forth, my mom was still able to talk and communicate and we laugh and have conversations.

[00:03:27] But by the time I moved, she was pretty much bedridden. She knew you were there, but she wasn't talking as much. So, but I'm thankful that I had the opportunity to travel back and forth. Because I got to spend that time with her.

[00:03:41] Rayna Neises: We never know how long the season will last, and so it's difficult when you find yourselves needing to make those decisions, but that sounds like a blessing to have been able to do it in different ways, to be able to support as she needed that support. I think it's amazing because we become experts in something we really would rather not, but I love that you're really the go to now for your family, and sadly it sounds like many people in your family are needing that support.

[00:04:07] Sandra Kiser: Right. Absolutely. Yeah, and my, brother, I would say he maybe lasted a couple years after my mom. But I have a sister who's a nurse, and one thing she had shared with us that sometimes when patients are younger, the decline seems to be faster. And I don't know if it's because they're more active.

[00:04:30] Right. And then they reach a point where they don't have that ability. To be as mobile, but, it was just still a blessing just to be able there and laugh with him and just, share stories and enjoy. It was an honor to be a part of that because he was actually one of my favorites, you know, y'all have the favorite sibling and, 

[00:04:51] Rayna Neises: You're not supposed to say that.

[00:04:52] Sandra Kiser: I know, right. But, he would always tease me when I would come home for the holidays. He'd pick me up from the airport and he'd say, Mama, you better check her bags because it's heavier than when she came. So he'd always tease like I took something. So we would laugh about that and about childhood.

[00:05:09] So, it was a blessing, even though it was something that was different. Difficult and painful. I look back and I'm like, gosh, what a blessing, because to be able to spend those latter days with them and you just never know. I didn't even think that when I was going to help with my mom that I would actually be there for my brother and that. I will be able to watch him go through that journey as well. So that was bittersweet, but, it was actually an honor just to be able to spend that time with him during his last days.

[00:05:42] Rayna Neises: One of the things that I hear a lot of people say is that Alzheimer's is genetic. And I think initially we've heard a lot of that. That seemed like that was kind of the initial thing out there that it ran in families. But with your work with the Alzheimer's Association, my volunteering too, we know that there's a component of that in some people, but it's not in all.

[00:06:04] Have you done a lot of research within your family to see what's going on? If you have that, determinant gene.

[00:06:10] Sandra Kiser: I have not done a lot of research. That's one of the things that's next on my list after, especially after hearing about my uncles. And I, you know, think myself, I don't walk around sad, but I'm like, man, I wonder if I have the gene, you know, cause that's a lot of connection there. And then you think about older people from years ago when you were a kid, then I wonder if that was Alzheimer's in them, but they call senility.

[00:06:37] I don't know. So, but that is something that I'm interested in because one of the things that I learned. From traveling back and forth with my sister in law to Birmingham with my brother is that the gene can lie dormant in your system for decades before you actually see some of the symptoms manifested. So it's definitely something of interest to me.

[00:07:01] Rayna Neises: Yeah. I think it's curious because there is, but it's less than 10 percent of the people. The gene is a factor as far as the determinant factor, there's a factor that kind of like heart disease or other diseases in families that, you have more of a tendency, but not the definite genetic ones.

[00:07:18] So I know with my mom, there was no testing available back then. My dad was tested and didn't have it. So I've chosen not to test either, but I know a lot of people, that do go ahead and look and see if that's something that's within the family. It's an interesting, I think I just like to keep up with it.

[00:07:38] Once we know more about what we can do about it, then I'll probably jump on board. But until we're there, I'm not sure I want to know, because like you said, it's a little hard to have that is your family legacy. Right. But I love what you're doing with it and how you're supporting others and your books. Share with us a favorite story,

[00:07:59] Sandra Kiser: I think one of my favorite stories with my mom, Was just on the trips home once we knew she had been diagnosed, listening to her share stories about her childhood and the things that they did and all things are so different now. This is ridiculous. What has happened to our world?

[00:08:20] But she would share that information and I just laugh. I said, well, things are different now. She was like, Oh Lord, Jesus, we wouldn't do that. And I think that was something that I will always cherish because she would share how the family, like a big deal for them was to gather around at one person's home and it happened to be their home.

[00:08:42] She said they would watch like the boxing matches because not everybody, had a radio and they were list. Well, now I should say watch. They will listen to because they didn't have TV. She said they will listen to the boxing matches and everybody would come over and it would be just a big celebration. And they would just like pretend like they were throwing jabs because, you could only hear. And imagine what was being said, what was actually taking place. And she's talked about that and then just her, helping her grandmother in the kitchen, cook cakes and bake. And that was such a joy to her.

[00:09:18] And I laughed because I said, wow. I said, she can remember this stuff from 70 years ago, but she doesn't even remember what she had breakfast or I had to learn. And my sister taught me this cause my sister lives in Atlanta. So she was a little closer to Montgomery and she could go more often and she would say, don't ask them what they ate because they're always going to say, I didn't eat and I did that.

[00:09:42] And I was like, mama, did you eat? No, I didn't eat anything. And I'm thinking like, wait, I guess I didn't believe my sister. Cause I was like, I'm going to try it for myself. And I asked her and she's like, no, I didn't even like a lady. I fed you. Yes, you did, but it was one of those things. It just makes you smile when you look back now. to be able to be there and just provide that support and care and just have a team of people to help you. It's an amazing experience. 

[00:10:13] Rayna Neises: Yeah, it is. I think one of the things that a lot of people don't think about is that because they need us so much, we get those opportunities that we wouldn't have had if they didn't. And the amount of time that we spend with our parents as adults is so small in just everyday life because everybody's so busy and there's so much going on.

[00:10:35] And though caregiving is difficult and we wouldn't want anyone to have to go through the journeys that we've been on as far as watching our loved ones pass with Alzheimer's. But the time, the time to hear those stories, your mom probably shared some of those stories when you were young and you just didn't care, you know, it just

[00:10:51] Sandra Kiser: like, I want to go play. I want to go outside and play.

[00:10:55] Rayna Neises: Right. So when we get older, we start to cherish them and enjoy them more. And it is such a blessing to be able to hear and see a side of our families that we didn't get to experience.

[00:11:05] Sandra Kiser: true. That's true. So with my brother, I think this is my favorite story. And I talk about it in the book. One day we were sitting outside and we were just talking about childhood diseases. And I was saying, Ooh, I remember I had the chicken pox. Cause my grandmother made me lay on the ground. And she said these chickens had to fly over you.

[00:11:26] And I was like, what? I said, she did. And I, I remember that. And I was like, what is wrong with this lady? Anyway, I didn't remember having, the mumps. My brother said, yes, you did. I was like, no, I didn't. I don't remember having it. He said, well, just because you don't remember having them doesn't mean you didn't have them. He said, you have them because our grandmother, she, I don't know what it was that she had put in this towel and there's a rag or something and tied it around my neck, and over my head. And I was like, you mean she tied it around my head and my neck? And he was like, you know what I mean? But I never remember having them, but I always laugh about that.

[00:12:06] And I try to go back. Even though I don't remember, but the fact that he shared that with me, that was really special to me. I was like, man, I, I did have the mumps. I've been telling my doctor that the mum;ps, cause I don't remember, you know, I just remember the measles and the chicken pox. Well, so, but that was one of my favorite stories with him because I mean, we went back and forth and back and forth and I was like, okay, well maybe I did have them because he was adamant.

[00:12:34] He was like, yeah, you did. And then when he. And I asked some of my older siblings and they were like, yeah, I think you did. I was like, Oh, okay. He was right. Cause you wonder, you know, at this point he had early onset and it's like, Hmm. Did not really like, but apparently he was right about that. my favorite story with him.

[00:12:59] Rayna Neises: Yeah, the older memories, they hang on to a little bit longer. So it sounds like he hung on to that for some reason and you didn't

[00:13:06] Sandra Kiser: He said, you were too little, you probably really don't remember. He said, but you did have him. 

[00:13:14] Rayna Neises: It's funny how the, the way that they treated things in the past were definitely different, but sometimes they worked really well and we've kind of gotten away for some of the things that are

[00:13:22] Sandra Kiser: yeah, sure.

[00:13:24] Rayna Neises: what would be one thing that surprised you most about caregiving? 

[00:13:27] Sandra Kiser: Surprised me most was the amount of time that needed to be devoted to the patient. I mean, I know that they're the priority, but until you walk through it, you just don't realize how the primary focus is them. Like things that you want to do, you basically have to put those on hold.

[00:13:51] Even though you have a team, like they're the primary focus. And I think that was the biggest thing for me, just. The amount of care that they needed, because once you finish one thing, then there's something else that needs to be taken care of and you don't realize it until you're in that space. I don't know how it was with your dad, but my mom could move so quick. You know, she'd be there one minute and she's like, Oh my God, where did she go? And then you come back and she's standing there and it's like, Mama, where were you? I was right here. And then you're looking like, lady, you were not right there when I came in here. Yeah. But I think that's the biggest thing, just recognizing that they are the primary focus.

[00:14:30] And I, I would hear my parents say when I was a kid, when you get older, you revert back to being a child. And it's almost like that childlike state because you do have to watch them because they will disappear. I don't know where they find the strength to move that quickly. But I think, that's the biggest thing, just time and time management and just having a team of people to support you and being flexible and flexible in the sense that people can give you what they can give you and not being so set on a routine where it has to be this way or I don't want the help.

[00:15:08] No, you have to be flexible and recognize that if they can give you 30 minutes or a couple hours, accept it because you'll appreciate it later. Just that time for yourself. If it's just to take a walk or take a moment to really eat your food as opposed to Looking and then you look and they're walked away.

[00:15:27] Rayna Neises: You need more support than you realize you do. So taking every little bit can definitely make a difference. Teepa Snow talks about the fact that they lose their ability to understand safety, but they keep their curiosity. And I think that's such a good way of describing it that they become just like, like you said, a little bitty baby will crawl right off the bed, right?

[00:15:49] They don't even know that it's unsafe, but there's always that curiosity. So those things that can be tempting and are dangerous, they, they've lost the understanding that they're dangerous. So it really does take being on call and alert all the time. And that's why I think it's so important as caregivers, if you find yourself a 24 seven caregiver is to, like you said, be open to taking every little bit that you can, anybody that will offer, and I always say, try to get them on a schedule.

[00:16:15] You know, if they'll come every Thursday from just noon to two and let you be able to go grab lunch or just go to the post office or whatever those things are that you need to do, it makes such a difference. So definitely important.

[00:16:28] Today's episode is brought to you by Hope for a Caring Heart Journal. This is a journal that I created for you, the caring hearts. It's not just a journal. It's a 90 day journey designed to uplift, inspire and support those with the compassionate task of caring for others. Each day presents an opportunity to discover new strength through scriptures of hope, engage in meaningful prayer, delve into reflective questions, that challenge and comfort and acknowledge the blessings that surround us even in the trying times, it's crafted to be your faithful companion. This journal is meant to be revisited, offering fresh insights and renewed hope with each cycle through. And I am offering you family caregivers I special discount available through the end of 2024, with the discount code of grateful, you can receive $5 off. 

[00:17:22] So visit www.aseasonofcaring.com and look for Hope for Caring Heart Journal. I would love to bless you with this. It's also a wonderful gift. So be sure to stock up on copies at a $5 discount with the code grateful let's hop back into our conversation with Sandra. 

[00:17:39] All right. Share with us one way that God showed up for you in your caregiving season.

[00:17:45] Sandra Kiser: He showed up for me, I would say in the support of family, friends, and the community, as I mentioned, like it's important to have a team there to support you in whatever care they can provide, accept it. And He also showed up in my life personally. It reminded me that He was there for me all I needed to do was to trust him because when you find yourself in that space, your emotions are all over the place and you're trying to figure things out.

[00:18:21] And I had to just take a moment and step back and realize like, okay, you're not having to do this by yourself. So that was the biggest thing. Him showing me that you didn't have to do it alone. And if you made a mistake, it was okay. Get up, try it again, or do it a different way or ask for help. That was one of the other things don't be so prideful. that you didn't ask for help because sometimes we think we can do it all ourselves and we wear ourselves down and then we're no good for ourself or anyone else. And so that was one of the other things he showed me. Ask for help. It's okay. If you know, you just don't know if people are available, if you don't ask, sometimes they can say, yeah, I'll be right over.

[00:19:07] I can't do it now. Like you say earlier, or I can come Thursday at two. Does that work for you? Yeah, I'll take it as opposed to no, that's not going to work. I need you now. So I think the biggest thing is just asking for help too. That was one of the things that he showed me was ask for help. It's okay.

[00:19:26] You think that other people are so busy with this or that, but sometimes I think people too, they don't come around or volunteer because they think, okay, you got it. But when you ask for help, then they say, of course. And you're like, wait, I could have asked you, but I thought I could be the hero and do it all myself. So that was one of the things he showed me. Don't be afraid to ask for help. Rely on community and trust him.

[00:19:55] Rayna Neises: such important lessons and the ones that we have to learn over and over again, aren't they?

[00:20:00] Sandra Kiser: Yes.

[00:20:01] Rayna Neises: It seems like sometimes we do pretty well and then we find ourselves kind of slipping back into, forgetting that he's there or forgetting to say, Hey, can you come help me with this? So, such important things.

[00:20:11] And, and it is so important that he created us for community and in this season of caregiving, it can become really isolating if we don't really embrace the community, ask for the community and realize we really can't do this by ourselves. 

[00:20:26] Sandra Kiser: True. We do.

[00:20:27] Rayna Neises: What would be one thing that helps you to live content, love well or care without regrets?

[00:20:32] Sandra Kiser: I would say the one thing that helps me to live content is, the joy and knowing that I did everything that I could do to help them. And also, one of the things that I've come to realize is that less is best. There was a time when I thought, I needed this and I needed that. And I still like things, we all like nice things, but that's not the priority anymore.

[00:20:57] After having seen my mom and brother walk that journey. The fact that I can wake up, with God's help, of course, wake up every day and I'm in my sound mind and I can take care of myself and do things for myself that just gives me peace knowing that, you know, what?

[00:21:13] Whatever comes your way today, guess what? You can take care of yourself. There are so many people who are in a position where they are relying on others to provide their needs. So that gives me peace. And then the fact that, I have learned to trust him and not myself and rely on him for, strength, right?

[00:21:32] Rayna Neises: That's so true. I think as we realize the important things of life. The unimportant becomes more obvious. And so we let go of those things that aren't as important or things that we maybe thought were important and really aren't. And it definitely helps us to build more contentment when we just continue being focused on what we're thankful for and all the blessings He's given us.

[00:21:56] And really being able to stay, you know, in tune with that trust of that he's got it. And like we said earlier, with it in our families, people ask me all the time, are you afraid you're going to get it? Well, I would, I mean, honestly, well, sure. Nobody says sign me up. Right. So, but we have to trust that God knows. And if that's the path that we walk, He knows and He'll provide just like he provided for them, He'll provide for us.

[00:22:25] Sandra Kiser: sure.

[00:22:26] Rayna Neises: yeah, we've got to keep exercising that trust muscle,

[00:22:29] Sandra Kiser: Yeah, we absolutely do. I'm learning from it.

[00:22:32] Rayna Neises: Yes. So what would be one thing that you would like to share with our listeners that are just in the beginning of caregiving?

[00:22:40] Sandra Kiser: My answer is threefold. And I always share this is that with Alzheimer's one, you don't have to be afraid of it. It's okay to talk about it and just be mindful of the things that you say in the presence of an Alzheimer's or a dementia patient, because you don't know what state of mind they're in at that moment and they can hear.

[00:23:04] And sometimes we're not sensitive to their, being there. And we say things that can be offensive or harmful to them. And we don't want to do that. So those are my, Final points. Don't be afraid of it because we need to talk about it because there are so many people facing it.

[00:23:22] We had our Alzheimer's walk last week here and I went to ask for a purple flower And she said we don't have any we're out of it, but you have orange so the fact that there are that many people that are losing loved ones to the disease lets me know that the number is We know it's growing, but to see that lets me know that there are more people that are aware of it and that are talking about it, because they, whether they say it or not, the fact that all those purple flowers were gone, it's like, wait a minute, that means that there are more people here today Who are facing this disease and the walk was a lot larger than it has been in past years.

[00:24:03] So those are always my, one threefold answer. Don't be afraid to talk about it because the person next to you may have been, may have gone through it or maybe walking through it now. There's still a stigma attached to it. Like, Oh my God, we can't talk about it. But yeah, you can and you should because you may be a blessing to someone else and you never know.

[00:24:23] Rayna Neises: For sure. And it is, there is really no one that you mention it to that doesn't say, Oh, my mom has it, my aunt had it, or, right now they're living with it. And so it is touching so many lives. And it is important to, I think, to say, You can not only survive this, but you can be thankful that you did everything you could. That's such an important statement. And I think as caregivers, we all are pouring ourselves into someone else and we have to do it in a healthy way. But it is important to be able to look back with no regrets. That's what I say too, is what, you know, I'm so thankful that I made decisions that let me not have regrets today because no matter what I did, I would still be here. I would still have. lost my parents. And so the choices that I made just let it make it easier to look back and know that I did the best that I

[00:25:18] Sandra Kiser: True. Very true.

[00:25:20] Rayna Neises: Thank you so much for being here today, Sandra. It was great to visit with you.

[00:25:24] Sandra Kiser: Thank you for having me. I enjoyed talking with you and getting to know you and hear your story. So see, I know someone in Kansas.

[00:25:32] Rayna Neises: Yes. Tell our listeners how they can find your books.

[00:25:36] Sandra Kiser: So my books are available on Amazon right now,

[00:25:39] Rayna Neises: and then you have a website with lots of great information, share that website address 

[00:25:43] Sandra Kiser: sure. The website address is www. alz4all. com.

[00:25:51] Rayna Neises: Great. And I will definitely link those on our show notes page as well. Listeners, if you didn't get that down, but lots of great information laid out in a way that's easy to find and, some amazing resources in her books. So make sure you check out Sandra. Thank you for joining us for stories of hope with Sandra. A Season of Caring Podcast has been created to share stories of hope for living content, loving well, and caring without regrets. If you have financial, legal, or medical questions, be sure to consult your local professionals and take heart in your season of caring.