Caring with Connection and Compassion: Stories of Hope with Amanda Bailey

In this heartfelt episode of A Season of Caring Podcast, host Rayna Neises is joined by Amanda Bailey, who bravely shares her journey as a secondary caregiver for her mother with Alzheimer's. This episode delves into the rapid progression of the disease and the challenges Amanda encountered while supporting her father, the primary caregiver. The conversation underscores the critical role of asking for help and the necessity of building robust support systems for caregivers.

The discussion also touches on the benefits of reminiscent therapy, offering profound connections and comfort to those with Alzheimer's. Rayna and Amanda explore the emotional and physical demands of caregiving, the search for balance, and the importance of spiritual grounding. Through their personal experiences, they emphasize the significance of being present, celebrating small victories, and navigating the complex emotions of grief and anger. The episode reaffirms the importance of doing our utmost for our loved ones and finding peace in the effort.

Furthermore, the episode highlights Amanda's inspiring initiatives, including founding an Alzheimer's memory walk in her town, launching a company to support families with long-term care solutions, and creating The Cognitive Busy Box for multisensory engagement. These endeavors celebrate the power of family support, the joy of collaboration, and the fulfillment derived from making a meaningful impact in the lives of others. This episode offers hope, encouragement, and practical advice for those navigating the caregiving journey with compassion and resilience.

Chapters

• 0:02 Stories of Hope for Family Caregivers
• 2:12 The Role of Secondary Caregivers
• 4:34 Support Systems and Asking for Help
• 12:57 Journey of Faith and Care
• 15:25 Finding Purpose and Contentment
• 23:27 Conclusion and Resources

Transcript

[00:00:00] Welcome. This is Rayna Neises, your host of A Season of Caring Podcast, where we share stories of hope for family caregivers, breaking through the busyness and loneliness of life to see God even in this season. Today, I'm excited to introduce you to Amanda Bailey. 

[00:00:17] Rayna Neises: Amanda's mother died of Alzheimer's and it changed her life forever. For the last 18 years, she has poured into senior living industry, a passion for helping seniors and their families.

[00:00:28] She is the founder of the cognitive busy box. A special box designed for those living with dementia to offer an opportunity to have reminiscent therapy as well as multisensory engagement.

[00:00:42] Amanda has been actively involved in caring for seniors as a Director of Assisted Living and Memory Care Communities. She has firsthand knowledge of how senior living communities operate and shares that knowledge with the families she helps with looking for long term care.

[00:00:58] She started her company Help for My Parents to assist families searching for long term care options. 

[00:01:04] Amanda, I'm so glad to have you here today. 

[00:01:06] Amanda Bailey: Hi, it's nice to be here. Thank you. 

[00:01:10] Rayna Neises: So tell us a little bit about your mom and what caregiving look like for her. 

[00:01:15] Amanda Bailey: So my mom was diagnosed with Alzheimer's when I was 35 years old, a few years ago kind of when it, it wasn't mainstream knowledge back then.

[00:01:28] I really think we were blessed because a, we live in Houston, which is some of the best. medical care in the world. But we had a doctor who put aside his own, what he thought he knew and what he thought he didn't know and said, you know what? This is outside of my realm. I think you should go down to the medical center and see a doctor at Baylor and it just so happened we were able to, she was able to be diagnosed by one of the most world renowned researchers in Alzheimer's. All that being said, you know, hers was a very fast pace from the time she was diagnosed until the time she passed away was about three years. So it was a really rapid adjustment for our whole family. But I was in a unique position because I was a secondary caregiver. My dad was the primary caregiver. You know, at times, the best I could do was support him gather information to present to him. He was the one making the decisions and moving forward on things.

[00:02:29] And you just, when you're in that position, it's difficult. You know, in some ways, but in other 

[00:02:38] ways, it's a relief. You're not having to make the hard decisions. You know, do we go on hospice? Do I sign the DNR? Things of that nature, but at the same time, you have to be that person that can gather up everything to present to them so that they can make an informed decision the best you can and, and really be there for them when they need an ear or a shoulder or just a hug. Because it's, as we all know, it's a very difficult journey. And secondary caregivers is a little different than the primary caregiver. Primary caregivers, So hard. And I think that's what surprised me the most about, about how hard that journey can be.

[00:03:18] Rayna Neises: I agree. I think because I walked in both places, obviously I was just a teenager when my mom was diagnosed with Alzheimer's. And so even putting myself in a caregiving role or thinking that I was, well, it didn't even cross my mind, but definitely over her 12 year journey, just that supporting my dad and knowing how to do that, once I gotten in my twenties, I was a teacher. And so be out of school for the summer and I would go home and be there for a couple of weeks and say like, dad, just go, just go do something. So that role looks really different, but it is so important. Because they need our support and oftentimes they're so busy with the day to day that they don't have time to learn about new things or to investigate something.

[00:03:59] Whereas we have a little outside perspective and and can kind of bring in something that they don't have time to or the bandwidth to really explore. So 

[00:04:07] Amanda Bailey: agreed. Agreed. 

[00:04:09] Rayna Neises: Really, really important roles, and I think that's one of the things that can be really helpful is to start realizing you are in a caregiving role, even when you don't realize you are.

[00:04:18] And that kind of starts to help bring some of these resources to light, which are so helpful. And 

[00:04:23] Amanda Bailey: the primary caregiver, you know, has such a burden, but it can be lightened by other people in their lives. If, if, if everybody will step up to the plate. And I also learned that when I got into a primary role with my own father later in life.

[00:04:41] There's a lot of people around who want to help, but they don't know how to help. And sometimes you just have to be bold enough to say, Hey, I need help. One time we, my husband and I were going to go on a vacation and I had adult children, college age, and I, you know, my dad was at our house and. He was okay, but he needed, you know, meals needed to be made and driving, driving him places needed to happen and things like that.

[00:05:03] So my adult children said, you know, Hey, we'll come in, we'll stay. And I was telling my sister, Hey, look, I'm going to be out of the country. If they need anything, they may reach out to you. And she's like, well, do you want me to come and just stay there? And I'm like, Oh, that would be huge. I said, you don't mind.

[00:05:21] And she goes, no, absolutely. I don't mind. So sometimes, you just need to ask. And I agree because a lot of people don't, they don't want to tread on what you need or take a guess at what you might need or not. But if you ask a lot of people will step up and help.

[00:05:36] Rayna Neises: Most caregivers look like they're doing it pretty well. And so it's 

[00:05:41] Amanda Bailey: difficult because they 

[00:05:45] Rayna Neises: don't see all that. They just see the part that you're putting forward in public. And so it definitely is helpful to just ask, you never know what they can do. So that's a great nugget of wisdom. Do you have a favorite caregiving story you'd like to share about your mom?

[00:05:59] Amanda Bailey: I do. So, and it was kind of I know we'll get into this a little later. It was kind of the birth of The Cognitive Busy Box. My mom had this little basket, little wicker basket that was like, had gold trim on it. I don't know where the thing came from, but she had a little stack of pictures that were, would be in it.

[00:06:18] And she liked to like thumb through those pictures and just look at them and pick them up. And she'd smile at them and things. And they were a variety. They were grandkid pictures. They were pictures from years ago. Travel pictures, sometimes it was a picture of her holding the dog at the Grand Teton's, you know, and things like that. It was a wide variety of, you know, hodgepodge of pictures, but they definitely brought her pleasure. And she was a, she was a walker. She liked to walk around the care home that she lived in and she'd just carry that little thing and then she'd sit down for a few minutes and then she'd pick it up and off she'd go again, but I found when I visited that we could sit down and I would talk to her about who was in the picture and she'd look at me and she'd smile and there was a, in my opinion, there was a, form of recognition there.

[00:07:10] And it certainly brought her comfort and pleasure for me to just interact with her and engage with her. This was long before I worked in senior living. I didn't know what I was doing. It was called reminiscence therapy, but that's what it was. It was reminiscence therapy. And it was we enjoyed those moments together.

[00:07:29] She had so many So many things that would go on and things would get flipped around in her brain. When my dad would walk through the door, she'd go, Oh, there's my band hus instead of husband. And, and, but it's, you know, that brought such great pleasure to my dad cause she knows who I am.

[00:07:45] She, she flipped the word, but she knows who I am. And that was so comforting to him at times. So there were things that went on that she definitely, you could tell she enjoyed it. And those, those were moments that I hung on to. 

[00:08:01] Rayna Neises: And I think it's so important. We had coffee table books. My dad had played for the Brooklyn Dodgers when he was young.

[00:08:07] And so we found books of baseball that were older like that. And Mickey Mantle, all that kind of thing. And we just sat for hours and looked at the books and talked about whether it be somebody in the stand or, other things. So I love that you found that connection with her. I found that it's something that it's not the past or the future, or it's the moment and being able to sit, talk about what you're both looking at right now made such a big difference. Sounds like that was true with your mom too. 

[00:08:38] I think staying in the moment. And that can be tricky because our natural instinct is, in our mind, we connect things to the past. And we do that automatically. And so, Sometimes your mouth runs away with it, but I love that, you can find times to just really, this is something we're looking at together and stay in that moment.

[00:08:55] So, yeah. 

[00:08:56] Amanda Bailey: And, and still here we are 21 years later and it's still memorable to me. 

[00:09:00] Rayna Neises: Yes. Yeah, definitely. So what's one thing that surprised you most about caregiving? 

[00:09:08] Amanda Bailey: How hard it is how emotionally, physically, mentally draining it can be because you want to be Everything to everyone and you know this this caregiving role pulls so much from you And so often we have people who are sandwich generation caregivers.

[00:09:30] They're still raising their kids, but they've got their elderly parents that they have to look after and that tugs in both directions. Whether you are male or female, it doesn't matter. It tugs both directions. If you're not careful, it can overtake you. So you have to find, I, my, my balance that I found was my quiet time that I did with God.

[00:09:51] Even if I had to get up at 4 30 in the morning to do it, I, I found time to do that because it was my balance and it was what, it's what worked for me and it definitely strengthened my relationship with God. I wasn't always real happy with God at times. I, you know, kind of screamed why a few times you know, but now here I am able to. Give back what he put on my heart. And the only thing I would change is having my parents still here. You know, is that realistic that I'm going to make, you know, I'm going to, I'm going to get to be 70, 80 years old and my parents are going to still be here. I mean, some people do but you have to kind of take the life circle as it comes. It's a hard journey and you don't quite realize how hard it is. 

[00:10:38] Rayna Neises: I think that's a blessing in that we just don't realize. Oftentimes when we talk to caregivers, they think, Oh, it's terrible now. And I just think, Oh, you don't know what's coming, but that doesn't help them. So it's okay that they don't know. Right? No, 

[00:10:52] Amanda Bailey: it's good. It's definitely a good thing. 

[00:10:54] Rayna Neises: But it's so important that we are there to walk them all the way home and God is there with us. You won't regret it. You 

[00:11:00] Amanda Bailey: won't regret it. It's hard. And in the moment you might be sad and angry and upset and be grieving. But at the end of the day, when time passes and you get that hindsight to look back at it, you won't regret you did it.

[00:11:19] Rayna Neises: Definitely. 

[00:11:20] Amanda Bailey: I mean, I, and they're gone 

[00:11:21] Rayna Neises: one way or another, whether you were there or not. And so I think it's not near as hard when you know that you've done all that you could. So,

[00:11:27] Thank you for joining me today with stories of hope with Amanda and glad that you've joined us. Today's episode has been brought to you by no regrets, hope you're caregiving season. It's my story of caring for my parents during their journeys with Alzheimer's disease, it's filled with heartwarming stories, practical tips and tools I use to bury them with no regrets, no regrets. 

[00:11:48] Hope for your caregiving season is a available no regrets. Hope your caregiving season is available everywhere you buy books. I do have special signed additions as well as bundles available at my website. A season of caring.com. It's a great gift for you or anyone you love who's in a caregiving season. 

[00:12:07] Now let's get back to my conversation with Amanda. Is there a specific situation that comes to mind when God really showed up for you and you remember just that, Oh, this is definitely him right here.

[00:12:20] Amanda Bailey: Yeah, so one of my screaming, you know fits at God Driving home and tears just coming down the week my mom was passing Me me yelling why why why you know a lot of people never get to understand why? they they may they may understand it when they get to heaven and the the you know, the The realization of what, what your life meant and how it, and how it played out was it was a journey and it was a journey for a reason.

[00:12:51] But I, I, I feel like that God really put this on my heart so I could help other families. I was sitting in church. My church used to do the in every month in July, it was the church has left the building. So the, the idea was to go out into the community and serve your community. And this was in May or June. We were talking about, the upcoming month of July and.

[00:13:16] deciding what was our, what we're going to be our giving stones and what, what were we going to, to do for our community? And I remember sitting there and it almost felt like a wash over me of realization that, you know, I had started the Alzheimer's memory walk in my town. And I was moving in a direction that I didn't know.

[00:13:42] I didn't know what direction I was moving, but I was moving. And the realization of, Oh, you want me to work with, with people with dementia. You want me to work with their families, don't you? And I mean, I just sat there and just tears, just streaming down my face, this overwhelming feeling of, Oh, I get it.

[00:14:01] I get it. I just don't know what you want me to do, but I get it. And And I like, I guess it was about eight months later, I stepped into senior living. It was a, one of those things where something opened up and I stepped up and I said, Hey, I'd like to do this. And somebody took a chance on me. And I've been here ever since.

[00:14:20] So 

[00:14:21] Rayna Neises: it's so neat how He uses all the things because I don't know about you, but I look back at all the different things that I've done in my life and they really have all helped equip me to be able to support where you are today. 

[00:14:33] Amanda Bailey: I know. It's amazing. Launching the launching my company Help for My Parents where I help families find long term care solutions in the Houston, Dallas area.

[00:14:46] But also The Cognitive Busy Box goes all the way back to those pictures that I spent time with my mom with. And, when you think about how that all kind of ties together, it's just quite remarkable. 

[00:15:00] Rayna Neises: Only God, which is so cool. And 

[00:15:03] Amanda Bailey: He had the plan the whole time. 

[00:15:05] Rayna Neises: Yes. Yes. And if he had told you when you were young, where you were going to end up, you'd be like, no way. I'm not writing a book. I'm not doing that. 

[00:15:15] Amanda Bailey: Are you crazy? 

[00:15:18] Rayna Neises: I love that. So what would be one thing that helps you to live content, love well and care without regrets? It's 

[00:15:27] Amanda Bailey: my family, my friends, my dogs and certainly the caregiving journey that I went on. I mean, live without regrets. I mean, we all have some regrets, right?

[00:15:41] But you know, if moving past that and, and just going, okay, well I'm going to make today better than yesterday was and just keep building on that. I mean, I can't ask for anything better. I mean, my husband and I work together in our company, which is wonderful. I, I always thought there's no way I could work with my husband.

[00:16:00] I would kill me, but we're, we're having so much fun. We enjoy doing it. And our relationship's even stronger than it ever was 37 years of marriage last week. And. We're just, 

[00:16:12] Rayna Neises: congratulations. That's awesome. 

[00:16:14] Amanda Bailey: Thank you. Thank you. And it's just, it's wonderful. 

[00:16:19] Rayna Neises: I think we have to be really appreciative of the support we have around us, no matter what season we're in, but who we have with us definitely makes a difference on our faith and just how we walk our lives.

[00:16:29] So it's a blessing to have. 

[00:16:32] Amanda Bailey: When my, my mom passed away, my dad needed to be around family. And I said, I looked at my husband, I can, can dad move in with us? And, and he was like, absolutely. I mean, there wasn't even a hesitation. There was no, there was no, and he, my dad. We had a very strong relationship and my husband lost his own dad at 17.

[00:16:54] So my dad was a huge figure in his life and and neither one of us regret any of those decisions because, you know, he helped raise our family. I mean, if I was busy at work and John was busy at work, he would run the kids to the activity and he would, you know, go to the ball games and, and do all the things.

[00:17:13] And, and he. You know, he'd mow the grass. He was a, an active part of our home. And I, I, I'm so thankful that I have a husband that embraced it. 

[00:17:24] Rayna Neises: Yeah. Yeah. That's amazing. So share with us a little bit more about The Cognitive Busy Box and what, what all's in there. 

[00:17:33] Amanda Bailey: Oh my goodness. I love, this is my, this is my, like my heart project, right?

[00:17:38] You know so I always used to laugh that when I stopped being an executive director in memory care facilities, I would become an activities director because I just enjoyed doing activities with the residents. That was always my thing. I kind of, when I ran a building, I instilled, okay, everybody in management has to stop.

[00:17:55] Or at least take one activity per month and do it with the residents. It doesn't have to be every resident, but pick an activity that you can do with a bunch of the residents, whether you are the maintenance manager or you are the, the, the kitchen manager or you're the nurse in the building, whatever it was, just make a, you know, you have a, I had a group of ladies that we made wreaths for.

[00:18:18] For the building. So they would make wreaths for their doors. And I, I'd make the wreath for the front door of the, of the month. And sometimes it was patriotic. Sometimes it was Christmas. Sometimes it was winter, whatever the theme may be, but we did it once a month. And we had a blast doing it. As I thought back and talked to families, you know, one of the overwhelming themes that I would hear from families is how guilty they felt not engaging mom or just putting dad in front of the TV where there was, they felt like they were bored and not, they felt like they needed to do something to engage their minds in some way.

[00:18:56] Who knows if it helps or not but it doesn't hurt sort of thing. So I created a multisensory engagement tool. So it's a box, so it's, it's pretty simple. It's just a little box like this and there's a picture of it right up there. Of all the things that are on the inside, so it comes with instructions for each item, so it will tell you what the purpose of the, of the item is and tips on how to like present it and work with the person with dementia, and then each item has its own purpose, so for instance, these are These are like little multi sensory hand squishy things, but they're also good for strengthening.

[00:19:43] So a little occupational therapy type options, but some are hard and sparkly, some are shiny, some are soft, some have texture to them. And now it varies a little bit from box to box and that's kind of the unique part about it. They can vary a little bit. There's deep texture type things. This is a deep texture strip, they call them calming strips. And it's been proven that these deep textures, when you rub your fingers across it actually cause a reduction in anxiety and people with autism. And ADHD.

[00:20:19] It's a sticker, so you can stick it on the box, or you can just leave it without it being on there. There's a wide variety in here, but one of my favorite things is these postcards. So the postcards are very recognizable National Monument type of thing. So like this is the Seattle Space Needle, and you can sit and kind of go through and say, This is the Seattle Space Needle and each on the back of each card tells you what it is in case you're really struggling.

[00:20:47] And I had one gentleman, we were doing field steps. I was going through these cards and we were talking about the different pictures and the White House was in there and things like that.

[00:20:57] And I got to a picture of the, now, when they brought him to me, they said, look, he, all he says is yes or no. And that's what he was doing. It's like, Oh, this is so pretty. This is the White House, you see the pretty flowers in front of it. And he said, yes. So he was giving me his yeses and nos.

[00:21:12] And when we got to the golden gate bridge, he immediately popped out with. That's the Golden Gate Bridge. And I was like, yeah, it is. And I said, I've never been there before. And he said, oh, I've been there. And just astounding. And I was like, I so wished for his family to be there to hear that. If he's just a yes or no person and that moment. That moment was right there. He knew exactly what that was. That was huge. And the Memory Care Director was like in my eyesight, but not in his eyesight. And she was like, I've never, and when he left, she goes, I've never heard him say more than yes or no. And he's lived here a year. And so that was huge to me.

[00:21:56] And you know, the reminiscence therapy of these type of things, just so amazing. One of my favorite things is this little lava lamp. I like to talk about the lava lamp that I had when I was a kid. It was pink and purple and pink was my favorite color and ask them questions like what's your favorite color and just kind of engage in a way. That's fun. I had one lady I was doing, I had gone into a care home and when I got there, they had one of those little boards that has the little locks and ties all over it. And they were all sitting around kind of doing it. There was two ladies and a caregiver sitting at a table. Messing with it. And I came in and I started, kind of doing my field research. This was part of our field research that we did this with.

[00:22:42] And one of the ladies, like after we had gone through several things in the box. Cause there's like nine different things in the box. It's all really cool variety of things. And she said, well, I like that. Your thing better than this thing. I was like, Oh, did I quote you on that?

[00:22:59] Rayna Neises: Yeah, that's fine. That's great. 

[00:23:04] Amanda Bailey: Yeah. It's definitely my heart project and I feel like it's back to what we were talking about, I feel like it's a big wraparound to everything I've ever done . From the time I was 35 when my mom was diagnosed to today, which we won't discuss the age today, but it's been a minute.

[00:23:24] So, yeah. 

[00:23:26] Rayna Neises: Well tell the audience how they can find out more and get their own box. 

[00:23:31] Amanda Bailey: So our website thecognitivebusybox. com you can purchase on there There's also a link if you prefer to purchase it off of Amazon There's a link where you can go to Amazon and purchase it that way You can reach out, my email is on there.

[00:23:47] You can reach out to me directly. I would love to be able to visit with anybody if they had any questions about it, or even, even if you had questions about care that, you know, obviously I'm not a doctor, I'm not a social worker but I've been around in, I've been in their shoes, and I've been on the side of running facilities for a while now, and I try to at least be an ear and offer resources that I can bump into, you know, in this industry because nine times out of 10, that's what people need. They just need resources or things that they're bumping into and they just don't know what direction to go. 

[00:24:25] Rayna Neises: Yeah. And they've never been there before. And that's what part of the benefit of us sharing is we have been not necessarily with your loved one, but we have been in a similar situation.

[00:24:34] So we have different resources. Well, thank you so much, Amanda, for being here today. We really appreciate you sharing just a little bit about your mom and your journey and then just kind of where it's led you to. 

[00:24:45] Amanda Bailey: Well, I appreciate the time and thank you. 

[00:24:47] Rayna Neises: Yeah. Well, thank you for joining us listeners for stories of hope with Amanda. Just a reminder, Season of Caring podcast has been created to share stories of hope, 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.