[00:00:00] Rayna Neises: 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 loneliness and busyness of life to see God, even in this season.
[00:00:12] Today, I'm excited to introduce you to our guest, CherylAnn Haley. CherylAnn lives in Tampa, Florida, where she's advocates for better, dementia care and education. In honor of her mom, because she is more often referred to as Sandy's daughter than CherylAnn, she named her coaching company Sandy's Daughter With 40 plus years of management experience and a Master's Degree in Christian Studies and Counseling. / CherylAnn became an Independent Positive Approach to Care Certified Coach after following Teepa Snow to learn how to best interact with her mother who has Vascular Dementia. As a PAC Independent Coach, member of the Dementia Care and Cure Initiative Task Force of Tampa and Alzheimer's advocate and Sandy's daughter. CherylAnn, partners with families caring for someone living with dementia, helping them to make decisions and find necessary resources available to them on their journey. She also offers support groups and workshops to local communities and organizations. Thanks, CherylAnn. We're so glad to have you today.
[00:01:14] CherylAnn Haley: Thanks for having me.
[00:01:16] Rayna Neises: So tell us a little bit about mom and what caregiving looks like for you right now in this season.
[00:01:20] CherylAnn Haley: So my mom is very independent and very outspoken. So, and actually I think I find a lot of people that are caring for their moms that are like that in this age. Which has probably made me very independent, very outspoken, which is why I'm here. She has been in a community since the end of 2020. I had to put her in a facility after she talked to police officer and to jumpstarting her car and sending her on the road to Tampa from her home and was missing five hours. So
[00:02:00] Rayna Neises: gosh,
[00:02:01] CherylAnn Haley: at that point in time, I was like, I am the one with the working brain and I can't live like this anymore. And I knew ultimately that that would be my mom's decision because my mom certainly would not want to hurt herself.
[00:02:16] But she definitely would not want to hurt somebody else driving when she shouldn't be. So for, the best of everything, I knew it was time to place her in a place where she was safe, even though I certainly did not want to do that during COVID.
[00:02:32] Rayna Neises: Yeah, that's a tough time to make that decision.
[00:02:36] CherylAnn Haley: Yeah, it was hard. I put it off as long as I could, but finally it just had to be made.
[00:02:43] Rayna Neises: So how do you feel like your caregiving is different now that she's in a facility versus when she was at home?
[00:02:49] CherylAnn Haley: Well, when we initially started this, I was absolutely clueless about Alzheimer's or dementia. I sometimes share that in the beginning, I noticed there was something wrong with my mom. And so I sat her down very matter of factly one day. And asked her if she was having an affair, because she had these missing time periods and couldn't explain herself.
[00:03:10] And now I look back on that and think, oh my gosh, if I had known more, then maybe I would have been able to pinpoint what it was. And so that went on a while before we even started looking into the dementia aspect of it. So, at the beginning, it was just me not understanding what was going on. I think back and I ask myself, what did I think was going to happen in the future?
[00:03:33] Did I think that she was just going to keep repeating the same story over and over again? And yeah, I think that's what I thought. But then as the dementia progressed, I was like, oh my gosh, there's so much more into this. So, she is in a community where she is well taken care of where she may have some behaviors that come along with vascular dementia in her personality.
[00:03:59] But I am able to visit her probably about four or five times a week and spend some time just really focused on engaging her and having the best moments that we can have with each other. I try to spend my time engaging her rather than being an aid in the facility.
[00:04:20] Rayna Neises: It can be really difficult to be that caregiver and remember to maintain the relationship. I think it's something that we really have to be intentional about and definitely is something we can do. But many times, even when they're in the facility, like you said, you're still there. So it's not like you're just like, Oh, this is easy. No big deal, right? You still have those constant visits and those opportunities to really interact. So that's great.
[00:04:44] CherylAnn Haley: Yes.
[00:04:45] Rayna Neises: What would you say was most surprising to you about moving into that caregiver role?
[00:04:50] CherylAnn Haley: All the decisions that need to be made. I had no idea how many decisions were going to have to be made. I guess I never fully understood how many decisions I made for myself on the daily. And then when you add in making decisions for somebody else, it's just It's just mind boggling, you know, and when we talk about it, we think like major end of life decisions.
[00:05:18] That's one aspect of it, but there's so many others like, okay, so I have to buy my mom new pajamas. Would she prefer long sleeves, short sleeves? Would she prefer night shirts? What would she prefer? What material would she prefer? And it's all All those small decisions, which realistically, depending on how far the dementia has progressed, those tiny little decisions, are huge.
[00:05:47] You know, if I buy my mom something and she looks at and says, that's ugly, I'm not wearing that. And I think to myself, Oh my gosh, I went to the store yesterday and I spent three hours just finding that for her. And now she doesn't like it. She doesn't want to wear it. And like, I didn't know that that was going to be her personal preference. It's just big, like the small things become big. Right,
[00:06:11] Rayna Neises: There are so many things we don't know about the person that we're caring for. And like you said, I always felt like, well, I would want somebody to know what I like because we, We don't, we don't think about how different everybody's preferences are because ours are so ingrained. And so just something as simple as finding tennis shoes or, a jacket. It's especially for my dad. It was like he wanted the same thing. And so we had to learn once we finally found something he liked, it was like, okay, we're buying three of them. Yes.
[00:06:47] CherylAnn Haley: gonna mold them. One of the other things that I didn't know about my mom that was a struggle, and this is kind of more of a caregiving aspect of it. I would try to help her get into her pajamas.
[00:07:01] So, I take my shirt off like this, just like over my head. Well, I don't know if my mom always did it this way or just does it differently because I'm helping her, but she like takes one arm out and then pulls her shirt over her head and slides off her other arm. So when I was trying to take her shirt out like this, she was getting really angry and frustrated with me.
[00:07:28] And she'd be like, what are you doing? Stop doing that. And it was like this struggle. So one day I finally sat down and said, okay, let me see how she takes off her shirt. And then I saw the one arm come out and then go over her head. And I was like, Oh my gosh, who knew that there's different ways to put your shirt on and take it off.
[00:07:49] Rayna Neises: Exactly.
[00:07:51] CherylAnn Haley: small things, small things in caregiving that like go a long way once you get that down.
[00:07:58] Rayna Neises: They really do. One of the things that we did was when caregivers took over cooking for my dad, one of the benefits of having him at home was that we could feed him whatever we knew he liked. And so that way we could, continue to keep him eating. Whereas sometimes when you place them that, you know, it's just not the same.
[00:08:16] And so sometimes I don't, my dad was a pretty picky eater and so making sure that he had what he wanted. So you leave a caregiver, for example, one of the things my dad grew up on was Rice with raisins and milk. And so a lot of people had not heard of that. It might be a Southern thing. I don't know why, but a lot of people hadn't heard of that.
[00:08:36] So the caregivers, especially young caregivers, are like, what do you mean rice? We're like, you need to boil the rice and, add the raisins and put the milk and dad likes the rice hot. And the milk, they're putting cold milk on it. Yeah, just put cold milk over the top of it. But just those simple things.
[00:08:51] It's so funny how we all have our own preferences. And we really haven't paid attention to that for the ones that we're caring for, especially with dementia, until you're like in a place where they can't do it for themselves. And then they don't want it. They won't eat the same. So we developed, menus and I made a little system where I actually said, okay, this is dinner. So it's hot dogs with sauerkraut. And that means he wants mustard and ketchup. I had to go through every little detail that you just never really think a whole lot about. So there are lots of details to be able to help make them as happy and healthy as possible.
[00:09:26] CherylAnn Haley: Right, I mean my mom's been doing this, she's 80 now, so she's probably been putting her shirt on by herself since she was four. You know, she's been doing 76 years, she's not going to change it now.
[00:09:37] Rayna Neises: Nope. Yeah and it's so interesting. Cause when you said she pulled her arm out, I thought, well, she's going to pull her other arm out and then put it over her head. Because a lot of times when you're dressing little kids, you put it over their head first and then put a hand in the hand, you know? But no, that's really interesting to go one arm and then over your head.
[00:09:53] So you just never know. Today's episode of A Season of Caring Podcast has been brought to you by No Regrets: Hope for Your Caregiving Season. My book that shares stories and tips and ideas of how to help your parents or those that you're caring for throughout your caregiving season. The first 10 chapters include tips and ideas of hiring and firing companies to work with dealing with doctors, medication management and that menu system that I developed to help communicate my dad's preferences.
[00:10:25] And the last six chapters have to do with self care tips and tools that I use during my caregiving season to live a life that I loved, even during that caregiving and to have a life to walk back into after that season was over. You can find No Regrets: Hope for Your Caregiving Season at all major retailers. I do offer a special signed edition at www.noregrets-book.com or a full bundle with my new journal and some other special goodies. So feel free to check that out. Join me as I continue, my conversation with CherylAnn
[00:11:03] so do you have a favorite caregiving story that you'd like to share with us?
[00:11:08] CherylAnn Haley: So when we first started out, because there was probably a couple of years that my mom had dementia and I wasn't aware of it. And so she would deflect from anything with sarcasm and sometimes hurtful comments. So when I kind of thought it was dementia and I was like, okay, then we went and got the actual diagnosis.
[00:11:30] That was still kind of shocking to me. The actual diagnosis, this is what she has. I made the decision that I couldn't change how anything happened in the past, but I could change how our future went. So my mom is an avid Disney fan and we're very close to Disney. And we had at some point in time said that we would stay at every Disney resort at least once.
[00:11:55] So I was like, okay, we're going to do this. And so I placed her at the end of COVID. So Disney still was slow going there for a long time and resort rates were inexpensive, kind of. So.
[00:12:11] Rayna Neises: Wow.
[00:12:14] CherylAnn Haley: do that and we were going to do that. And we brought like fake champagne and we brought cups and stuff and we would do this. And so there was one day we did like two nights and we came home and I put her in her room and I went to go to the bathroom and I came out and she said oh there you are I haven't seen you in so long. What are we doing today? And I was like, what are we doing? We just got back from disney like aren't you exhausted?
[00:12:45] And so but she had no memory of it So one of the things I started doing for her and I still do occasionally because we're not traveling so much anymore. After we did something exciting I would order those booklets from CBS photo and I would order them when we left Disney. And when we got back, they would be ready and I would pick them up and I would give it to her so she could show other people. We even took her horseback riding one day at Disney. And so we figured this one hour trail ride, which my mom did so much better than me. And so we come back to the resort because I guess horseback riding is muscle memory Like the girl got her on the horse and said to her Well, I guess she used to ride before and my mom was like I sure did when I was a teenager. And there's me trying to get on the horse, you know And my mom's just kind of trotting away and i'm like the heck?
[00:13:42] And so we come back from that experience and I'm ready to sleep two more days and she's in She's in the bedroom and comes out like 10 minutes later before I could even like wind down to take a nap. And she said, good morning. What are we going to do today? And I'm like, are you kidding me? It's like the Energizer bunny
[00:14:01] Rayna Neises: That is so, that is so great. I love that because I think pictures can make such a big difference even if they don't remember being, a part of that picture. It still just brings up a different kind of feeling of them being able to enjoy it. So that's such a great idea to do it that quickly is really impressive.
[00:14:18] So you're doing great, but I love that all of that time at Disney, I'm sure is filled with great memories for you guys.
[00:14:25] CherylAnn Haley: and a lot of travel tips.
[00:14:27] Rayna Neises: I'm sure you have a lot of travel tips to share
[00:14:30] CherylAnn Haley: there was one day cause I was, I bought like a little alarm thing that goes in the door, which even if you have your loved one at home, I would suggest some kind of alarms on the door in case they travel. And So I'd put the alarm in the door and then the luggage and the wheelchair in front of the door.
[00:14:47] So in case she tried to go anywhere, I would know and I think I'd wake up in the morning and be like, Oh yeah, she didn't do anything. Well, one morning I woke up and she had all her clothes from her suitcase on top of me, laid out on my legs. And I thought, Oh my word. She got up and unpacked her suitcase on me. And I didn't even wake up. Like. You just got to be careful because you're not as sensitive to sleeping as I think sometimes.
[00:15:15] Rayna Neises: I agree. And I think sometimes it's because we're just purely exhausted. And so we were doing better initially. And then we get so tired that we don't hear as much as we think. And I know I slept a hundred percent better with the bed alarm, just knowing that as soon as he got out of bed, I would hear that.
[00:15:32] That just gave me peace, a good night's sleep, maybe not as good on the nights that he got up two or three times, but at least I knew when I was asleep, I had a good, good sleep because I wasn't worried about it as much. So yeah, those tricks are really important and you have to learn because you never know behaviors change. So just because they've never done it before, it doesn't mean they won't do it this time. Right.
[00:15:53] CherylAnn Haley: Yes, was the first time
[00:15:56] Rayna Neises: There is.. one of the things that I love to hear the answers to, because I often think people will have the same answer and we actually don't hear the same answer very often at all, but how did God show up for you in your caregiving?
[00:16:09] CherylAnn Haley: so personally, I think God has used this to really change me. So I didn't start to be a practicing Christian until I was 30. My mom Again, very independent. Taught me to be very independent and self supporting. So, kind of the opposite of being a Christian. So, when I started following Jesus, other people had talked about having their life verse.
[00:16:40] So, I chose four verses. First Thessialonians 4. 11, "Make it your ambition to lead a quiet life. You should mind your own business and work with your hands just as you were told to, so that your daily life may win the respect of outsiders. And here's the key, so that you will not be dependent on anybody." And that pretty much summarizes how I lived my life.
[00:17:07] I was dependent on nobody but me. And so through the years I've seen God kind of work that out of me. You know, and then it got to the dementia point where I was making all these decisions and caring for my mom and running around to Disney and I know that I'm a blessed caregiver because a lot of people don't have The opportunity to do that, but I will suggest that maybe sometimes We do have the opportunity to do more because there were many days where I was like, okay, that's it we're not doing this again. And then I was like, okay, I can do one more, you know? So I don't want to joke and say I suffered through that, but there's things that people probably could do with their loved one that maybe they're hesitant to do. And I hope that hearing me gives them the courage to try to do that little extra thing.
[00:18:09] But as we went through this I was working, and all those decisions, and the decisions at work were just overwhelming to me, like, I couldn't do it. And then, when you hear that, or stop to think that, because your mom has vascular dementia, and also has Alzheimer's, I run the risk. And so when you start reading about, what could have gotten my mom here, and what stress does to you and stuff, I was like, something has to give.
[00:18:38] And so I was like, God, this is everything I have. And something has to give what's going to give. And I honestly felt like he was like, okay, you're going to have to stop working. And I was like, stop working. Who's going, who's going to provide for me now? Who is God? God is our provider. So here I am.
[00:18:59] Feeling really stupid saying, who's going to provide for me, but God, who's going to provide for me. And then him being like, I am, you know? And so, I mean, I, I would like to say that I've learned that lesson because I think when I learned that lesson, perhaps life will be a little bit easier for me, but I can a hundred percent look back and say, God has provided my needs.
[00:19:29] And. In God, providing my needs through other people and just through some things that I'm like, wow, how did that happen? You know? I think also not only do I need to know that God provides for me and that I can depend on him, but also I need to be grateful, more grateful when he does provide for me. And I like, I just feel embarrassed, actually kind of ashamed to say that that's a lesson that I have to learn, but that's a lesson I have to learn.
[00:20:03] Rayna Neises: We can be quick to ask, but not always quick to say thank you. Right.
[00:20:07] CherylAnn Haley: Right.
[00:20:09] Rayna Neises: Sometimes we just don't notice that that's where it came from. We just are busy going and we get what we wanted and we just kind of keep on going. Right. So yeah, I think that's something that many of us can really stop to acknowledge and to be really grateful for. And the discipline of gratitude really can make such a big difference to help us to pay more attention to those things.
[00:20:29] CherylAnn Haley: And you kind of see this played out, like watching my mom with dementia. Sometimes I see that played out, you know, like somebody will, like, these people are showering her and they're helping her get dressed. And then she'll turn around and call them, like, a rude name or something. And part of that's the dementia.
[00:20:46] But still you're like, mom, you should be kinder. You should be more grateful. And then I'm like, oh. I should be kinder. I should be more grateful. You know, and so it's just how amazing how it plays out that way.
[00:21:02] Rayna Neises: Definitely. We know biblically suffering leads to sanctification. It leads us closer to God. And if we choose to use that opportunity more like him, but we have to make those choices. We have to be intentional.
[00:21:16] What would you say is one thing that helps you to live content, love well, or care without regret?
[00:21:22] CherylAnn Haley: I think well, the Holy Spirit for sure.
[00:21:26] Rayna Neises: Yeah.
[00:21:29] CherylAnn Haley: I think just stopping and checking myself. I make sure that I get, this has been something that I've been really, Fight hard for is getting my sleep at night, you know. Seven to eight hours of sleep and so this is this sounds like a another silly thing But I learned to get a full night's rest. I have to go to sleep earlier if I know i'm gonna get up at 6 30 and I want Eight hours of sleep.
[00:22:00] I have to go to bed like by 10, know like I can't stay up till midnight and have to get up at 6 30 and then wake up the next day and be like Why didn't I get enough rest? You know, and that's an important aspect of maintaining my personality, and making sure that I can interact with my mom well, her people in her facility well, other people around me And that's just been like an overly simple, simplified way to make sure that I'm making better decisions. Back when I was working and not getting enough sleep and really running myself ragged, cause. Honestly, that's kind of like our way in many cases. And providing for myself just stepping back and making sure that I'm taking care of myself more than providing for myself, you know, seems selfish sometimes, but like, it's what has to be done to be a better, happier Cherlyann.
[00:23:07] Sherrilyn.
[00:23:08] Rayna Neises: Yeah. Yeah. It really is sometimes something that seems simple, like getting eight hours of sleep isn't as simple because it's something that we're quick to sacrifice, but it really can have a big impact whenever we become intentional with it. So great suggestion.
[00:23:26] What would be one last thing, a little nugget of truth you'd like to leave with our listeners and possibly then how they might connect with you if they want to stay in touch.
[00:23:34] CherylAnn Haley: So I think one of the most important things to do is pause. become educated, learn as much about dementia as possible for yourself and for your loved one. Don't necessarily take like little sound, sound bites here and there, but really research it and step back and look how it applies to your person and yourself.
[00:24:00] Oftentimes we say if you've met one person with dementia, you've met one person with dementia. Everybody's different. You know, a couple of weeks ago, somebody said, they say that my sister has dementia, but she's not mean. So maybe she doesn't have Alzheimer's. I was like, wait, like, so you think all people with Alzheimer's are mean? And she said, yes. And I said, Did you see that on a commercial on TV? For a medicine?
[00:24:34] Rayna Neises: Yeah, my favorite commercial.
[00:24:36] CherylAnn Haley: she said, yes. So I said, okay, let's play this commercial. You know, I'm like, so I pulled it up on my phone and I'm playing it and I said, you know, in, in this part of the commercial, the daughter walks in and grabs the mom's toothpaste out of her hand.
[00:24:52] I said, if I walked in and grabbed your toothpaste out of your hand, Would that make you angry? Would you swat at me? And she said, yes. And I was like, okay, so you have to dive deeper and not just take the little thumb bites. And that's really important to me is I, that's why I spend a lot of time like sharing information, like how it applies to my mom and how it applies to me, but also challenging people to say, okay, so this, this scenario might not be your scenario, but how can you see that play out in your life? And what do you need to learn more about to get a handle on that?
[00:25:36] Rayna Neises: So important. I totally agree with you, especially we know in this day and age that most of the information we're getting are in soundbites. And there are good soundbites and there are not good soundbites, but none of that, just a soundbite is not enough to truly understand what's happening.
[00:25:54] Both in how to care for ourself and how to take care of whoever we're caring for. You know, there's a lot of information out there. I've been just. I'm so in love with brain research and learning more about how our brain works. And that's, I think is what's so awesome about Teepa's program is just talking about what's really happening in the brain so that we have a better understanding of what is happening so that we can then understand the behaviors a little better.
[00:26:22] But that's true in everything. If we truly get a better understanding It's not that we're going to have a a knowledge base like a doctor, but we can have a deeper knowledge base than we have so that we can be more prepared for what's coming and also be more aware of how to support the person that we're caring for.
[00:26:39] CherylAnn Haley: now? I will say one of the things that my mom's neurologist taught me is My mom's neurologist refers people to me because he admittedly says I don't know anything about really caring for these people and how a caregiver manages their stress and how a caregiver best interacts with people. He said, I don't know about that.
[00:27:03] I can know about her brain, and I can know about the behaviors that come from her brain, but, like, the care aspect of that, I don't know. And so, I would 100 percent tell people, make sure they find a doctor that communicates clearly and humbly like that. You know? That's awful humble for him to say that.
[00:27:25] You know, and so people said, well, he's not a good doctor if he doesn't know that. No, no, no. This is not his specialty. His specialty is my mom's brain. Me interacting with my mom is not his specialty because sometimes one of the hardest things that we as care partners have to learn is sometimes to change our loved one's behavior we have to change ourselves
[00:27:51] Rayna Neises: Yes,
[00:27:52] CherylAnn Haley: and sometimes a hard pill for us to swallow.
[00:27:56] Rayna Neises: it is difficult, but I think it's true. There's so much to learn we can't know it all, but we can know more than we do.
[00:28:04] CherylAnn Haley: Right. Yep, 100%.
[00:28:07] Rayna Neises: so CherylAnn, tell us how people can get in contact with you and, and support Keep up with all that you're doing.
[00:28:13] CherylAnn Haley: I think the best way, the way that I use the most often and update the most often is my Facebook page, which is called Sandy's daughter. And so, I mean, that's what people refer to me as all the time. It's Sandy's daughter. So I named my company and my Facebook page, Sandy's Daughter . So I will post a lot of information of things that I've learned, sound bites that I've seen that I think are very beneficial to others and just information that I know, and I'll try to break it down. Like it's brain awareness month. So there's a lot about, for me, the early signs of Alzheimer's, like I should have known them and I should have known what to look at for them. So I've taken some of those and then translated over what that looked like in reality for me and my mom. Daily tasks, tasks of daily living became difficult.
[00:29:09] Well, what did that look like? My mom kind of stopped going to the grocery store. She stopped cooking. I went to her house and was like, there's no food in here. Like, what are you guys eating? Decorating her Christmas tree for four days. I heard that she was decorating her Christmas tree and so when I got there on a Saturday and it had five ornaments on it, I was like, Mom, I thought you've been decorating it.
[00:29:31] And she said, Oh, I have been decorating it. And I was like, what is she like? I was just like, what is she talking about? Why is she lying to me? But it's not, it was like, she probably started to go decorate her Christmas tree all four of those days and maybe got one ornament on there and that was it, you know? And so I tried to pull it apart, like how it applies in real life situations./
[00:29:56] Rayna Neises: Very good. Thank you again CherylAnn for being here today.
[00:29:59] CherylAnn Haley: Thanks for letting me come talk and share.
[00:30:03] Rayna Neises: Audience, thank you for joining us for stories of hope with Cheryl Ann. A Season of Caring podcast has been created for sharing stories of hope for family caregivers, to help them live content, love well, and care without regrets. If you have, any financial, legal, or medical questions, be sure to contact your local professionals and take heart in your season of caring.