Finding Joy and Purpose in Caregiving: Stories of Hope with Mark Applegate

In this episode of 'A Season of Caring Podcast,' host Rayna Neises interviews Mark Applegate, a family caregiver with a passion for supporting those affected by dementia. Mark shares his experiences caring for his mother, who battled dementia for 14 years, offering poignant stories and insights into the ups and downs of caregiving. 

They discuss dealing with genetic predispositions, the surprises and challenges of dementia care, and the importance of community and spiritual connection. Mark also talks about the therapeutic benefit he found in documenting his journey through his blog, Digital Cornbread. 

The conversation provides hope and practical advice for other caregivers navigating similar paths.

Chapters

• 0:04 Caring for a Parent With Dementia
• 6:24 A Roller Coaster of Emotions
• 9:56 Finding Purpose in Dementia Care
• 11:11 Navigating COVID Challenges
• 17:25 Embracing Joy in Caregiving
• 19:19 Supporting Others in the Season

Transcript

[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 busyness and loneliness of life to see God even in the middle of our caregiving season. I'm excited to introduce you today to our guest, Mark Applegate.

[00:00:20] Mark is a Christian, a hubby, a dad, and a cornbread cook. He's an IT I. T. geek advocate, writer and athletic wannabe on the side. His passion is loving his neighbor by helping those struggling with dementia to find hope. tools and community. He's been married to his super patient wife for 33 years. They have three great kids and a polydactyl cat with a right angle tail. Welcome Mark. Good to have you here today.

[00:00:48] Mark Applegate: Thank you for having me.

[00:00:49] Rayna Neises: So tell us a little bit about who you've been caring for and what that looked like for you.

[00:00:55] Mark Applegate: I thought I was going to ask about the cat. no, my, I've been caring for my mom , she was diagnosed in 2009. she passed away on July 2nd of this year. So about six weeks ago, I was a part time caregiver. I, helped her in her home some, and then she was placed in a skilled nursing facility, starting in a memory unit and then advancing to the general population when she was no longer a flight risk.

[00:01:15] Wonderful lady. She was 65 when she was diagnosed and fought it hard for 14 years. my grandmother also had the disease. Her mom, my uncle also had the disease, her brother. So it's, have a set of genes on that side of the family that seems to have the maybe APOE 4, tendency to have the disease maybe.

[00:01:32] uh,I definitely treat it seriously.

[00:01:34] Rayna Neises: And that's really difficult because Back in the eighties when my mom was diagnosed, , it was all genetic. now we learn that there's a big component that's not genetic, but there is still that genetic piece. And so it's difficult. I have people asking all the time, have you been tested?

[00:01:49] And I'm like, no,I love that you're participating in research and you're in the middle of that learning and being a part of helping people learn more about it and what we can do to cure it one day or prevent it for sure. But, for me, I'm just like, until we get there where things are a little closer, I've just chosen not to. So we know my dad didn't have the gene. So I think that helps too.

[00:02:15] So tell us a favorite caregiving story.

[00:02:18] Mark Applegate: Oh gosh. You got so many caregiving stories. One of the fun ones, mom was a really fun person, a very big laugher and just had, we always had a good time every time I was there. Even as things got stressful, she was still wanting to have fun. Came to the memory unit one day, she'd only been placed for, We really didn't understand what a memory unit was like.

[00:02:38] how it's kind of a community of shared property, we'll say, everyone's got everyone else's clothes and stuff. Wasn't used to that, but that's okay. We got it figured out. But we came in one day and she was missing her dentures. I thought, Oh goodness, what do we do now? we, put our Sherlock Holmes hats on, looking around in people's, cabinets and places, the nurses said, we'll keep looking. She had a very distinct, upper plate on her, dentures that had a kind of a gold rim around the back of it.

[00:03:02] Isn't like some sort of grill or something, but it, it's just something they used to do. It's kind of a highlight on it. So you just kind of a distinct one. You could tell it was hers. Couldn't find it and thought, Oh, well, maybe someone stole it. Maybe they saw the gold and stole it. Who knows? So after about three or four or five days, we kind of gave up on it. About a week later, we came in and. I'll be darned if she didn't have her dentures in. I'm like, oh, sweet. Problem averted. We can go to the next problem. I got to talking to her and eating lunch. I looked at her. Something with her mouth brought my attention to it. And it didn't have the gold plate in it. I thought, oh, did they take the gold plate out?

[00:03:36] I got looking at it, and it wasn't her dentures. It was

[00:03:39] Rayna Neises: weren't her.

[00:03:39] Mark Applegate: dentures. 

[00:03:41] Rayna Neises: Oh

[00:03:41] Mark Applegate: it's

[00:03:42] a little hard to get used to, but, um, there's a million stories like that with her too.

[00:03:48] Rayna Neises: But she found a lot of fellowship and community in her memory care, right?

[00:03:54] Mark Applegate: Oh, absolutely. she'd been playing the piano since she was about sixeight, and, she played in church growing up and played the old hymns. And so she, that's, that was kind of her happy place. she would, , hop in the piano room and when she was still kind of mobile and everything, we'd all meet in there and start playing the piano.

[00:04:10] And, I'll be done with the people that were kind of bed, not bed bound, but kind of the ones that their home bodies are staying in their rooms, but come out and circle around and they'd mouth old hymns and smile. And if they couldn't sing them, they'd tap their toe or something, you know, and you could tell they were all being blessed by it.

[00:04:24] And she always had a glow on her face when she got to play the piano So that was her way of kind of getting into the community and everything. One of the biggest blessings she gave us is when she was first diagnosed, you know, she said, Hey, if I have to go to the nursing home one of these days as this thing progresses. Don't feel bad. She said, I'll find a way to get along with everybody. I'll get to know people. I'll play the piano for them. And, years later, when she got there, it all came to fruition just like that.

[00:04:47] Rayna Neises: That's great. I find one of the most important things to me as you're caring for people is letting them continue to be who they are as much as they're capable of being. And, you know, I compare caring for my dad and caring for my mom. That was so different.My mom was a homebody. My mom was a homemaker. And so those kinds of tasks around the house and being able to help with the dishes and fold the laundry all of those kinds of activities were great for my mom.

[00:05:11] My dad kind of didn't really enjoy that. He wanted to be active. He wanted to be in the yard picking up leaves or he wanted to be walking the track or playing ping pong, and so I think it's so important to find, what they still can do and Be able to allow them to continue to be themselves.

[00:05:27] So I don't play the piano. I wish I had learned to be more musical because I think it is a gift that lasts your whole life. And music is such a blessing, especially for those with dementia.

[00:05:37] Mark Applegate: It is. And it's a neuroprotective thing to learn a new instrument at our age too. So

[00:05:41] if 

[00:05:42] Rayna Neises: true.

[00:05:42] Mark Applegate: are in a foreign language or something new, it's good for us. We do it.

[00:05:46] Rayna Neises: Yeah. I have a friend that's older. That's picked up the harp. I'm like, wow, that's quite a task, but maybe, maybe I'll figure something out to try something new that way. So I can play the recorder. And my fourth grade grandson thinks that's awesome. So there you go.

[00:05:59] Mark Applegate: That's awesome.

[00:06:00] Rayna Neises: So what's one thing that surprised you most about caregiving?

[00:06:05] Mark Applegate: Well, dementia caregiving was a lot different than any caregiving ever, ever done. I didn't realize how much of an up and down rollercoaster event it was. I'd come in one day and she was practically normal seeming, you know, you could carry on a little conversation with her in the nursing home and she could remember some of the stuff we even talked about the day before You come in the next day and she might have her, pants over her lower half her shirt over her lower half, her pants on her head or any number of things trying to do it on her own. or she might be really upset or she may be mad at someone And I wasn't ever really used to seeing my mom that way.

[00:06:43] She was always such a timid, nice person. to see her that frustrated was hard to get used to, just a roller coaster. and again, how long it was, she was had it for 14 years. Like you're, you're a relative. it takes its toll. 

[00:06:53] Rayna Neises: Yeah,

[00:06:55] my mom wasn't diagnosed early and she lived 12 years with the disease. My dad had an early diagnosis. He started with Mild Cognitive Impairment and then went on into Alzheimer's. his was definitely longer than 14 years, most people don't expect it to be that long.

[00:07:10] There is no unlike a roller coaster. You can't really see where you're going. there is no stopping and getting off and then starting again. It's we're just along for the ride and we don't control where we're going. So it is a lot like a roller coaster in that way. But we don't even get to see where it's going.

[00:07:25] I was just with my grandkids on vacation and I was in a round boat that went it. On one of those slides. And I was like, why are the people screaming? It doesn't even look that bad. Well then I was the one facing backwards and screaming my whole way down. So I often think it's like riding a roller coaster backwards because you don't know where you're going and you have no idea what's coming.

[00:07:45] And like you said, the good days are so sweet and the bad days can be really tough. 

[00:07:49] Mark Applegate: I wasn't prepared

[00:07:51] for that at all. I mean, we should have been cause my grandmother had it, but she was much older at the time and she didn't go into it seeming like my mom did. My mom was extremely athletic. I mean, she'd walk five miles a day and, she was sharp as a tech up until the year she was diagnosed, really. So we were caught off guard. We shouldn't have been, but we were caught off guard completely.

[00:08:12] Rayna Neises: Yeah. I think the changes are just hard. I think they're hard with, anybody who's aging, watching them, become different than what they've always been. But at the same time, it definitely with dementia is at a whole different level. And the emotional side is a huge piece of that.

[00:08:27] One of the things I love about talking to Mark is how he documented his mom's journey with such love and compassion, but it gives Him a chance to go back and see the special moments in a way that I don't have. Both with my mom and dad. It just wasn't something that I probably was equipped to do, or even really thought about doing during our journey. I took photos with my dad, but not video. And I think the video has to be such a blessing. So check out www.digitalcornbread.com and you'll be able to find the video of his mom playing the piano and so many other sweet ones. I will also link some on the show notes page. So be sure to visit www.aseasonofcaring.com. To be able to check out the show notes page. 

[00:09:13] I just want to remind you that I offer coaching services. For those of you who are caring for an aging parents, coaching is an opportunity to have that clear space and time to talk about what's working. And what's not. And for you to problem solve what will make it better? We don't have magic wands, we can't fix everything, but we definitely can make adjustments that help life be easier during this difficult time. I'd love to talk to you more about coaching. If you're interested, reach out on my website@aseasonofcaring.com. Now back to my conversation with Mark. 

[00:09:47] Rayna Neises: I know thatthat there's many times because God's in the middle of everything all the time, but share with us a time that really stands out to you of when he really showed up for you.

[00:09:56] Mark Applegate: I had a really bad day that day with her. I got there and it was one of those bad days where She was upset crying.

[00:10:02] She had her clothes on wrong. She was having all sorts of issues. You know, we got her settled down in her room and everything. And we said, Hey, let's go and play the piano. started playing the old hymns. I think she played Blessed Assurance. If I remember right on this video and, in the middle of her video, she, I kind of panned the camera around to the other side.

[00:10:20] Rayna Neises: My stepdad singing on the left here to me. And she's playing, she looks over at me and smiles while she's playing it, she's barely verbal in real life at this point, but she could sing pretty well still. And if you could see the video on my blog, she got a knot on her head too, cause she had fallen several times. But right in the middle of her playing, smiling after being upset, really upset, you know, 15 minutes before then she reaches up with one hand still playing and gives me the okay symbol Wow.

[00:10:47] Mark Applegate: somehow prompt her to let me know it's going to be okay? I was really upset. I was a mess. And I thought, you know, it was one of those days we all get as a caregiver. We think this is just going on forever. And she still had five more years at that point,

[00:10:59] but it was. Really, really bad day. And it was a blessing to me for sure. Millions of other stories like that. God has always been there in very challenging behavior days. And then, in 2021 during COVID, they called us in said, well, we have bad news. She's had some seizures. we haven't, they haven't let us in the building for, you know, eight months or whatever,

[00:11:22] because of COVID. I said, well, in all likelihood, this is your last weekend with her. So we're going to set aside a special room and put baggies on the wall so you can come in and spend the last day with her. So we brought in me and my siblings and my stepdad and, and, you know, spent, oh gosh, a full 24 hours singing the old songs and laughing and just, It's kind of just seeing how she's doing and she perked up a little bit, you know, and then, the next day, uh, still there, get perks up a little bit more.

[00:11:51] We're all having a good time and just kind of talking and visiting, you know, and I guess it was day three. They said, well, I guess we was kind of wrong on that whole dying thing. So you guys need to go and leave again.

[00:12:02] Rayna Neises: Oh,

[00:12:04] Mark Applegate: Very discouraging in our heart at the time, but it's also very encouraging that He gave us another chance to, because we were like, we were starting the grieving process again.

[00:12:13] You know, the, we've been pre grieving for 10 years, but we started the real grieving process and then the Lord said, no, it's not time yet. So we got another, they kicked us out again for the rest of the COVID, so another six months without getting to see her other than through the window and, but, instead of it being a very, very sad, discouraging thing to get kicked out, we kind of took it as more of a triumph that God gave us more time and, we had a good time during that time, really did. She smiled a lot more than normal and have all sorts of pictures of it and stuff. It's a special time.

[00:12:46] Rayna Neises: yeah. Especially because you had been separated for so long. It was like this little respite in the middle that you wouldn't have been able to plan to get, He had to do that for you. 

[00:12:54] Mark Applegate: Absolutely. 

[00:12:56] Rayna Neises: I love that. It's beautiful to be able to see what joy you brought her, even in the thick of, , she was obviously not doing well, but having you around really encouraged her and, gave her what she needed to make it through the next six months, you said, right? So that's, that's tough, but it's good 

[00:13:11] Mark Applegate: Of COVID. Yeah. And then she, then threeeven there are two and a half more years.

[00:13:14] Rayna Neises: Yeah. Without being able to be with her is what I was thinking. 

[00:13:16] Mark Applegate: Oh yeah. Yeah. Cause window visits, anyone that had, was going through that journey during COVID window visits for someone with dementia, they give her her, iPad, they'd have us through the window talking into our phone and she's like waving us in. It's like, we, we can't, we couldn't even really tell her we couldn't, it was almost worse doing window visits than it was not doing them, you know?

[00:13:35] Yeah. That it's tough. I think for normal people, it was difficult. So people with brain change and dementia, it, I can't even imagine how difficult that was. I was thankful that that wasn't part of our journey because it was such a crazy time in the world and definitely in trying to even just support your loved one. There were so many. Things that didn't make sense on so many sides. 

[00:14:02] Rayna Neises: So we'll share with us one thing that helps you to live content, love well, or care without regrets.

[00:14:10] Mark Applegate: Oh goodness. Several things came to mind. One day I had my CEO of my company, my boss come in to nursing him with us. This is before COVID happened. She was still pretty, pretty early stage in the disease and everything. and not early stage in disease, early stage in needing to be placed. She was kind of early to mid stage. I was walking up and down the, doing our pacing like we would do for hours sometimes, you know, and see my CEO was with me doing it, and she looked over at me and said, Mark, is, is there something wrong with me?

[00:14:38] She didn't know what was going on kind of. And I said, what do you do to, what do you, how do you, first of all, how do you answer that question? Yeah, that's, that's a hard one. Cause there's all sorts of things wrong with her. I said, you know, mom, You just, you have some big memory problems that we're trying to get worked out for you.

[00:14:53] We're talking to doctors. That's why you're here is we're, we're working through this with the doctors trying to find a way to fix it for you. we'll do everything we can to make things well and everything. And she accepted that and was content with it herself. So when she became content with the fact that we were trying to help her, that helped me a whole bunch and it kind of led me on a journey that, doing things for people with dementia is, one of those ways that all things work for the good or those who love God and called according to his purpose, right? It's one of those ways that Things like that, which is really pretty cruddy can work for good. You know, I, it kind of gave me a service niche in the kingdom where I could, I could make good things out of bad things, 

[00:15:37] Rayna Neises: yeah,

[00:15:39] Mark Applegate: So it's, I mean, I hate to use a cliche that it gave me purpose, but it did, it gave me a purpose with the disease. It really did. And all along the whole time, doing a lot of kind of unusual things for the Alzheimer's Association and, through, I work for the Area Agency on Aging, Senior Age, and doing a lot of unusual things, a lot of extra things, with them has helped me mentally health wise, it's helped me, spiritually too, it's helped me kind of, in my mind, make good out of bad. That make sense?

[00:16:09] Rayna Neises: I can really relate to that. I know for me, because Alzheimer's been a part of my life since I was 16. Obviously losing my mom and having my dad diagnosed, it was really difficult to hear that diagnosis just because it was like, really, we're going to have to do this again.

[00:16:25] I mean, it just seemed unbelievable, but after his passing, that was definitely one of the things the Lord really laid on my heart was the scripture that talks about take the comfort that you've been given and comfort others with that. That's kind of how I then made that shift in my career to offering, support to caregivers because I know how important it is to have that support.

[00:16:46] And I walked that walk. So definitely it gives us a way to be able to make peace with, what his will was knowing we can trust him, but it still hurts. And so I think it helped me to take some of that hurt and really, like you said, serve others and encourage them with a comfort that I was given.

[00:17:05] Mark Applegate: Yeah, it's not meaningless. Nothing that happens to us or about us or around us is meaningless. It may seem meaningless sometimes if it's something small, but, um, it's not a senseless death we're dealing with in dementia. There's apurpose somehow, and somehow it's for the good, and somehow find that path where it is.

[00:17:25] Rayna Neises: Another thing that came to mind when you were sharing about your mom asking that was my dad for after diagnosis and before he was that dependent on help. His sister lived with him and I would go and visit once a month. I lived out of town and I would come home and almost every time he would say, Rayna, can you help me?

[00:17:43] And I'm like, sure, dad, what do you need? And he would say, there's something wrong with me. Can you take me to the doctor? Dad, you're right. You know, something is wrong and we've been to the doctor and you're taking medicine and we're doing the best we can, but it was 1 of those things that he was really aware of not being able to think right.

[00:18:00] For years, he would ask, can you take me to the doctor? And I'd be like, yes, we've done it. It's done. It's a tough thing to answer. So I'm glad she took your answer and had peace at that point. It took him little bit longer to get to that place. But I think that is one of the things that's really interesting about the disease is there are a great number of people that never know that anything's wrong, but then there are others that definitely know that their brain's just not quite working right.

[00:18:23] Mark Applegate: Things are wrong. Of those people that are in that realm also say, Oh, there's nothing wrong. You get mad. That's a, that's tends to be a, seems to me to be a cause of their anger. Sometimes there's mad there. They can't get it figured out. and they're trying to use the same brain to figure it out. That's broken.

[00:18:38] bad combination.

[00:18:41] Rayna Neises: that frustration level is really high and that was something, I could see with my mom in that there was a very small window of time when she was very frustrated and she didn't want help cause she just didn't understand she could do it. I can do it, I can do it. And eventually, she settled into accepting and being willing to accept that help. But it's tough. I mean, I can't even imagine what it's like in that brain. Like you said, it's broken. There's a part of it that's not working, but there's so much of it that is early on that I can imagine how frustrating it would be. 

[00:19:11] Mark Applegate: Yeah. to, you've, you've been through it a couple of times so you can see where they're at almost exactly. Now you're like, you always talk about on the show, if you've seen one case of dementia, you've seen one case of dementia, but still you recognize all sorts of things that are going on and in the support groups I'm involved in and facilitate a constant question begins with, have you ever seen, Dot, dot, And six out of 12 or six out of 20. Oh Yeah. it's, it's hard.

[00:19:42] Rayna Neises: But I think that's where support groups really help and having support can also help because it is so foreign to watch your loved one go through this. when you hear others have been through it, have survived it, there's comfort that comes with that and wisdom that they can share.

[00:19:59] Well, we tried this and it worked and not everything works for everybody, but some things to try are more helpful than not at all. Right? So I love that. You're really giving back in that way because support groups are so important.

[00:20:12] Yeah.

[00:20:12] Mark Applegate: I love my supporters and I started facilitating them even before I was ready to do it, probably,So there's kind of a support group for myself that I was doing for them, you know, kind of most of the time actually was, I told them each as we start classes, this is as much for me as for you.

[00:20:26] I know a lot of stuff about the disease, but it's all of our hearts are connecting together today. 

[00:20:31] Rayna Neises: Yeah, for sure. And I hear over and over again, people in the medical profession, they know it all, but when they live it with a loved one, it's a whole different ball game. And so that's kind of where you were coming from is like, I know it on textbooks, but now I'm walking it with you. I'm right alongside you.

[00:20:45] And it is a whole different thing to have that knowing and that support in that way. 

[00:20:50] Have one last little nugget of truth to share with your fellow caregivers, what would that be?

[00:20:57] Mark Applegate: I talk about it, every support group, and Teepa is really big on it in the Gems video and in different things that she's dealt with. you gotta focus on what's left and not what's missing. Every day you gotta milk for joy. if you don't, you'll find things that are they can't do today.

[00:21:14] They could do yesterday. It'll make you to dispondent and sad and you've missed out on opportunities to have good times to. Every day, honestly, till the last week. My mom was live. We had joy. We really did. We had times it wasn't happy skippy what most people would think of joy at all. I mean, mom, a good example.

[00:21:34] My mom had toward the end, had Parkinsonism. Her arms were pulled up like this, you know, up to her chin. She had washcloths in her hands. But I'd break out my phone, play the old hymns, I'd play Old Rury Cross by Alan Jackson, cause he had a nice low voice, or maybe one of the Gaithers, and her arms would drop down a little bit, and sometimes everyone saw I'd get a smile out of her and stuff. She literally had, she couldn't feed herself, couldn't literally do anything for herself. That was as good to me as a hug would have been or anything,

[00:22:01] because I was able to provide for her some spiritual nourishment, some joy. And, if I would have been concentrating on looking at the different things that are going wrong and stuff, I would have made it, it would have been, I can't see how people can, but boy, the tendency is the opposite of that, you know, because it's so easy to see those things broken.

[00:22:19] Rayna Neises: Yeah. 

[00:22:20] Mark Applegate: around.

[00:22:20] Rayna Neises: It is. 

[00:22:22] there's always joy no matter what our caregiving looks like, whether it be caring for somebody with cancer or caring for somebody who's been in an accident there's always those joy moments and It's a matter of discipline to learn, to see the joy and learn to focus in on that.

[00:22:36] Mark Applegate: Write them down too. I'll go back and reread stuff to my little blog. It's main reason I did my blog is so I'd be able to go back and reread and kind of relive it a little bit and stuff. Um, because especially toward the end, it got harder and harder and it was good to go back and see some of those good times and some of the videos and stuff, you know,

[00:22:53] Rayna Neises: share with our audience where they can find your blog.

[00:22:57] Mark Applegate: it's called Digital Cornbread, Digital Cornbread. com. it's called that because Digital things are made up of ones and zeros, just on off switches, a whole bunch of them. And that's what digital things are. It's really a simple concept, a one or a zero, an on and off. But it makes a really, really complex thing.

[00:23:14] And dimension is a really complex thing.I'm a corny person. I got a corny sense of humor. You'll see that in my blog a little bit. Bread is a Christian blog. It's not as evangelistic maybe as I'd like to have been, but it had all sorts of unusual audience and I did it exactly like I did it because of all sorts of reasons.

[00:23:30] I've written almost a thousand articles now. I'm in the nine hundreds. I forget what it is exactly. So if I wrote, and they're all long form, so if I did a long form, it'd be a, 2000 page book probably, or something like that. I'll never be able to turn it into a book, but, it's been a joy and it's been a joy to do. And I'm not by any means boasting about it. It's just been a way I could process the experience and hopefully pay it forward a little bit.

[00:23:54] Rayna Neises: So Digital Cornbread. com, all right. That's where you can keep in touch with Mark. Thanks again for being here today. We really appreciate just your perspective and encouragement in how you walk through your journey of caregiving.

[00:24:06] Thank you Rayna. It's been great being here.Thank you listeners for joining us today for stories of hope from Mark. And remember that this 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.

[00:24:32] ​