A Season of Caring Podcast

Encore Episode #1: Stories of Hope with Pat Burkett

• Rayna Neises • Episode 232

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Caregiving doesn’t wait for perfect plans or tidy feelings. Pat invites us into the real work of loving a spouse through frontotemporal dementia—spotting the first behavior changes, pushing for a doctor who actually listens, and choosing calm care over empty checkboxes. Her story isn’t about fixing the unfixable; it’s about dignity, advocacy, and the courage to do what works when conventional paths only add stress.

We walk through the moments that reshape a life: when Alzheimer’s meds made everything worse and she had to say no; when mowing the lawn became a sacred ritual that kept Don grounded; when the grief that started years before goodbye finally demanded attention. Pat shares how therapy and a short season on antidepressants gave her the steadiness to process layered losses and return to prayer with honesty. A late-night caregiver post even prepared her for Don’s cluster of seizures just hours later, a startling reminder that provision can arrive right on time.

Along the way, we talk about invisible grief, stigma, and how to measure love without tying it to outcomes. Pat offers the kind of clarity caregivers crave: you cannot do this alone, and you don’t have to. Receive help early. Set routines that soothe. Release the guilt that tells you there was a perfect decision you missed. After loss, she found hope again in remarriage, a blended family, and a new home—proof that life after caregiving can be tender and bright.

If you’re shouldering change you didn’t choose, this conversation offers practical wisdom, faith-filled perspective, and hard-won peace. Subscribe, share with a caregiver who needs it, and leave a review to help more people find these stories of hope.

SPEAKER_03:

Hi, this is Raina Nysis, your host of a Season of Caring Podcast. And before we begin today's episode, I want to take a moment to share why this conversation matters so deeply. This is the number one most listened to episode of a Season of Caring podcast in 2025. And I don't think that's by accident. Caregivers reached for this story because it names the things that we rarely say out loud. That grief begins long before goodbyes, that peace sometimes means choosing a different path than expected. And that love isn't measured by outcomes, but by presence. In this episode, you'll hear from Pat, who shares her journey of caring for her husband Don after a diagnosis of frontal temporal dementia. What unfolds is not just a story about disease or loss, it's a story about dignity, advocacy, faith, and learning how to live without guilt in the middle of things you cannot change. Pat reminds us that while we may not be able to alter the destination, we can shape the journey with kindness, intention, and grace. If you're walking through change you didn't choose, if you're carrying grief that feels invisible, or if you're wondering whether the way you're showing up is enough, I hope this conversation meets you right where you are. Let's listen together. Pat Burkett was raised in Southwest Kansas and she graduated from Newman University in Wichita with an accounting degree. Pat worked for 30 years for Farm Credit before retiring to become a full-time caregiver for her husband. Pat has a son, a stepdaughter, and seven grandchildren with her husband Don. She is married again. She and her husband Dennis are active in our church at one church at Pleasant View. They also enjoy spending time with family, watching grandkids' events, and traveling. Welcome, Pat. I'm so glad to have you here today. Thank you. I'm glad to be here.

SPEAKER_01:

So share with us what your caregiving season looked like. I cared for my husband, Don. He had frontotemporal dementia with the behavioral variant. He lived 10 and a half years after he was diagnosed. Frontotemporal is a little bit in the news now since Bruce Willis was diagnosed with it. Bruce has a slightly different variant than Don. Don was the behavior variant, which I think Bruce's is more of the speech. Yeah. I started to notice changes in Don's behavior, some obsessions, bad decisions, unusual decisions and behaviors. And he also started to forget the names for objects. It was ironic not ironic. It's I believe God's hand in this is that his mother also had some kind of undiagnosed dementia. And she has quite a bit of time with us during the last of her life. And after she passed away, I started praying almost every day. God, please don't let Dawn have dementia. Please don't. So even when I was not being so kind to my husband about all these changes, I was still praying. And then one day it was so clear you're praying for the wrong thing. So I convinced him that we needed to do something. And unfortunately, we had just changed doctors. This new doctor was not good. We had to change again. And you see, God's handed it once again. Someone recommended a younger doctor. We went to him, found out his mother had early onset Alzheimer's. And his wife, he said mainly his wife, was caring for his mother and helping. So he sent Don to KU Med Center in Wichita, and he was diagnosed with a frontotemporal. And I'll just say at that time, I had never even heard of it.

SPEAKER_03:

Yeah, like you said, it's in the news more now, but it's definitely one of those things that until you have it hit your family, there are 110 different kinds of dementia. And until it hits your life, a lot of times you haven't heard of them.

SPEAKER_01:

And one thing I'll say about my doctor and encourage other caregivers to find a doctor who cares about you. He was very concerned about me. And from what I've heard from other caregivers, that's not always true. That you are going to have many things happen to you. And you need to have a doctor who cares and recognizes that.

SPEAKER_03:

Yeah, I think it's so important. I know one of the struggles that we had was when behaviors came up was getting people to just listen. And my dad always had the most odd reactions to medications. And so really having someone that hears you, when even when it's not a typical symptom or reaction to a medication, letting them hear that this is different, something's wrong, and reacting to you. So I love that that you mentioned that because it is not always easy to find. And I always say, even in this day and age where insurance is different, they still work for you. So you can find someone else. You don't have to keep hiring somebody that's not listening.

SPEAKER_01:

That's true. And one other thing, too, is you don't always have to go. Don would get so upset when we would have appointments. He would be so nervous. And I remember the follow-up with the neurologist a year after he was diagnosed. And it lasted maybe three minutes. And they said, We'll see you next year. So we were still seeing someone at the KU Med Center. And I asked her, I said, now why am I going to this neurologist? And it took her about three or four minutes to say, well, it's just good to have one. I thought, no, we don't have to see him, and we don't have to see you because there are no medications for frontotemporal. We tried the ones for Alzheimer's, which made everything worse. Yep. And we stopped. So it's important to know that you are in charge of that. Just like you said, you're in charge of your medical care to a certain extent. And we just opted not to go. And I know some people, they do like to go. They want to see MRIs and see the progress, but that was not a good option for us because of all the stress that it put on us.

SPEAKER_03:

Well, and we have to realize that we have permission to do what works for us. And we're not cookie cutter. We're all different in how we react to medications, how we handle anxiety, all of those things, we can do what's best for the person we're caring for and for ourselves. So I love that point. Pat, how old was Don when you were going through this?

SPEAKER_01:

He was in his early 60s.

SPEAKER_03:

Okay.

SPEAKER_01:

And most people who are diagnosed with frontotemporal are in their 40s to their six sixties. So it is a young onset. And from what I've read, which I can understand, sometimes it's misdiagnosed as mental illness or depression or something else. Especially with those behaviors being a part of his. Yeah. Yes. Don knew the whole time that either he had frontotemporal or that something was wrong. Even at the end, he even told me, I don't have a brain. He always knew something wasn't right. And he would try, he didn't want people to know at first. And he and his mom both were jokers. They liked to joke. They liked to they were good at playing cards because they could bluff. So he could get by with it for a while. Because he was always teasing people. We worked in kids' ministry, and the kids would always talk about how he had a nickname for each one of them. While later on I'm thinking it's because he didn't know their name. Just put a name tag on. He would call them something different. So as he thought, and then the time came when he couldn't pull off his way anymore. And we did tell people, and I think most people knew something wasn't right. But didn't exactly know.

SPEAKER_03:

Yeah, I think it's so challenging. I think personality has something to do with how they handle it, but I also there is a term agniocea, which is the term that someone is not aware of their illness. And so it actually is a diagnosis of something that some people just never are aware that they have anything wrong with them. Whereas there's another person, about 50%, who do know. And so my mom was in the in the field of not knowing, and my dad was in the field of knowing. So my mom was very verbal about my dad taking over, and my dad was doing everything. And I don't understand why he's doing it because she just didn't realize. He told me he took over cooking, he told me I had to, Raina. He said the food got to the point that the dog wouldn't eat it.

unknown:

Yeah.

SPEAKER_03:

We were slipping the food under the table, and the dog was chowing down on it. So he wasn't hurting her feelings. And then it got to the point that the dog wouldn't even eat it. And so he was like, I just had to take over. But she resented that because she didn't realize that what she was doing was wrong. Whereas he was more like your husband, and he would sit and you could just see him thinking and thinking and thinking. And he used to say to me in the earlier stages, Raina, can you help me? And I'm like, sure, dad. You know, what do what do you need help with? I need to go to the doctor. Something is wrong with me. I just can't think right. My brain just doesn't work right. You know, he would use those words. And so I don't know which was better. I I think my mom was blissfully happy. It didn't impact her the same way, but for my dad, it was frustrating. Yes. There was that thought of I should be able to do this, I should be able to figure this out. And that was really unsettling at times. I tried to distract as much as I could or put him to work doing something he could do so that he wouldn't sit and stew about it.

SPEAKER_01:

That's very true. My husband was active, he exercised. We did not hire people, we did things ourselves. And he really did. He just liked to work. We worked in church, we worked at friends' house on mission projects. We worked. But with frontotemporal, they don't necessarily lose their memories. They're there, but they can't find them, or they can't find them in the right order. So when you need to unload and reload the dishwasher, you may forget the steps. So that it that could be a mess.

SPEAKER_03:

The problem solving sequence of being able to get things in the right order. Yeah. My dad was a real problem solver too. And that was what I think triggered him early on with the Alzheimer's was I can't figure this out. I should be able to do this, but I can't figure out what what how to start or what to do first or that kind of thing. Can be really frustrating for him.

SPEAKER_01:

Yes, yeah, very frustrating. And it was difficult for the things that he couldn't do anymore, but he sure didn't want me to do it. So if I would have to wait until he was napping or or out with someone, we had a very old car that fluid constantly. So he would just have a fit if he saw me changing or adding fluid to the car. So he would have to wait until he couldn't see me do it. Yeah. Or resort the garage and put it back in order after he and then he'd come home and resort it again. He was very busy, which was good. And I think that's why he lasted ten and a half years after he was diagnosed. But it certainly kept me busy. Sure. At a lot of different levels. Yes. Like he mowed. At the end, he just loved to mow. He would even when he was on hospice, he would mow every day. The people at hospice said that they, in their meetings, they would call him the man who mows. So I knew the day we went out to mow and he said, You're gonna have to mow. I thought, you're gonna die. And he did 10 days later. Wow. Yeah. Because he just needed to be busy.

SPEAKER_03:

That was his, yeah. My dad was very much that way. And I do agree with you. I think it helps so much to keep them engaged in what they can do. And that's amazing that he could continue to mow safely, even if it was every day. He probably wasn't mowing the grass because there was no grass getting to grow. But just being able to do that routine brought him peace. I think it's so important. Sometimes we're busy trying to make them live in reality and well, the grass doesn't need to be mowed. And that doesn't work because that brought him joy to be able to have that routine and to do that. So that was really wise to let him get out there every day and become the man who mowed.

SPEAKER_01:

He would just mow for hours and hours, and I'd sit and watching. Sometimes a friend would come over and sit with me, and he'd watch you mow. So yeah.

SPEAKER_03:

That's great. So what would you say was most surprising to you in caregiving? The grief.

SPEAKER_01:

The grief is just overwhelming, especially over the years. There's and I guess I never thought about that. Um I'm an accountant, I'm analytical. I read everything I could. I prepared plans for what would happen if something happened to me. I signed him up at Presbyterian Manor. I mean, I had plans in place. I had goals for him, keeping him safe, productive, and happy. But the grief is something he just cannot prepare for. And you keep just watching what that disease did to him. And then especially over the length of time, you lose your life. You know, Don and I had a wonderful life. We had friends, we had grandkids. We did a lot of things with our family. We took trips, we volunteered. We just had a great life. And then it just gradually starts. It's gradual at first, and then after a while, it's just completely different. And then you have the grief of losing a husband. Yeah. There's no one to have a conversation with. You make all the decisions. And I think it was about five years in, he told me, he said, I know you're my wife.

SPEAKER_00:

I love you because you take good care of me, but I don't know anything about you. And so that it was sweet, but also tough.

SPEAKER_03:

Oh yeah. Yeah. I think we're doing a better job of talking about grief and caregiving because more of us are talking about it. But it is one of those pieces that we can't solve it. And so I think we don't talk about it. Like you said, I can have these plans to do all of these things in the things that I feel like I can control, but what's the plan to deal with grief? So how did you handle it?

SPEAKER_00:

I'm gonna say not well for a long time.

SPEAKER_01:

And I was part of Kairos Outside Prison Ministry, which is a ministry to women who have incarcerated family members. Well, I don't know, maybe three years into it, I decided I wanted to work one of the weekends, and you have to do training. So my two wonderful sister-in-laws came from out of town, spent the day with Dawn. When I came home, you know, just thank you, thank you. And they said, you know, we were so glad to spend the day with Dawn. And they said, You're gonna need something to go back to when this is over. And that's when it hit me. Wow. This will be over. Yeah, dad will be alone. Yeah. But through this ministry, I met a woman who was a licensed social worker who saw patience. And I kept her card a couple of years thinking, I need to see her sometime. Maybe it was six, seven years in. One year after Christmas, I just laid on the couch and cried and slept. And Dawn and the dog, I looked down there, they'd be on the floor laying by me. And I thought, we're not gonna make it. So I called her and I went to therapy. And I'm getting teary-eyed now, but I didn't cry the whole 100 years. No. She encouraged me to go on an antidepressant, which I did. And a few months after Dawn passed, I visited her and she said, You don't need to see me anymore. You're crying, you're grieving. I would encourage people to think about that. I know there's mixed feelings about taking an antidepressant, but it wasn't forever. Right. Yeah. It was for that season, and we did survive it.

SPEAKER_03:

Well, and I think it's so important that the medications combined with the therapy as well, that it's not just the medication is not going to fix the problem. No. The reality is nothing's going to fix the problem. You're living with someone who's dying. And so that grief is normal, but at a point in which you're not functioning, it's not normal. So being able to work with someone who can help you be able to decide is medication going to help with this, or is there something I need to do differently, or how do I need to take care of myself? What does that look like? Is a really important step. And I agree. I think so many times we're just in the thick of caregiving that we're not even thinking about life after. And it almost feels wrong to think about life after. But at the same time, I always say the season will end and a new one will begin. And the thing about caregiving is the end of the season is going to be the end of their life. And we don't want to talk about that. We don't want to think about that, but it is the reality of what it is. And so I appreciate you sharing that because grief is a big piece of it. And I don't think that most of us slow down enough to even realize that's what we're doing is grieving. And those comments, like what he said to you of not really knowing you anymore, they hurt. There's no way around it. And when my dad would say he, no, I'm not married. No, I didn't have kids. Oh, yeah. I mean, you know, it hurts. There's no other way to put that. You can understand it logically, but in your heart, it still hurts. And so we have to take care of those hurts, or we're gonna find it snowballs on us.

SPEAKER_01:

Yes. And I found out that I was not good at grieving who one of my very close friends we had met in an adoption support group, and her husband was diagnosed with a different early onset dementia just months before Dawn was. So we had our own little very unusual support group that two women who adopted older children and had a husband with an early onset dementia. And we would talk about that. Something would happen. We need to grieve that. Well, he can't figure out how to put his razor back together. We need to grieve that. He can't find psalms in the Bible anymore. You need to grieve that. And then pretty soon there's so much loss. You just can't do it individually like that. Yeah. It's just too much. And I found out from therapy that I'm not good at grieving, and you should be. Like my mother had died probably two years before then. And I had supposedly retired, but mainly retired to take care of Dawn. Because you haven't, you haven't grieved your mother or your career. And I said, Fortunately, I knew this, knew my therapist. I said, no, you don't understand why I'm here. She said she is no longer practicing, but a wonderful Christian lady, which I believe is also important. You need to find another Christian person to watch this with you. She would say things to me like, Now, Pat, have you prayed about this or just worried about it? I've just worried about it. Thank you. Thank you for thank you. I'll work on the prayer part next. Yeah. Yeah. I'd teach you how much you tell me this. Yeah. Yeah.

SPEAKER_03:

Well, and you know, I've found through supporting people in caregiving that I talk a lot about hope and the only hope is in the Lord. And so without talking about that, I don't really have a whole lot to offer because this is hard. And there is no happily ever after from a world perspective. This is just hard. But God is still good. And the happily ever after for us is that we'll see them again. And this is only a small season of our time together because we'll be together in eternity as well. And so it's that perspective that can bring peace that nothing else can. So I agree. Definitely finding people of faith to encourage you in that, but definitely even professionally can make such a big difference. So tell us one time that comes to mind of how God really showed up for you in your caregiving.

SPEAKER_01:

I've thought about that, and there's so many times. I know. Yes, I know. But one special time, and this was getting close to the end, and I knew it had to be close to the end. I followed a Facebook group for spouses with frontotemporal. And I couldn't look at it very often. Or some people had to block because of all the comments. But one night my iPad was right by my bed, 10 o'clock at night. I thought, you know, I haven't looked at that for a long time. I'm just gonna look at it. Right there, there was a post about a man who had had three seizures in a row. There were about 30 comments, and I read every one of them. And I thought, you know, I've never heard of this, but if this happens, this is what I'm gonna do. At midnight I heard a horrible noise and I ripped off Don CPAP mask, and I thought, you're having a seizure. And then he had another one at one and another one at three. Wow. There are no odds that I would have just read that post. Oh, yeah. Two hours before it happened. I knew then I had already decided two hours before what I would do when that situation happened. So, you know, God gave me the knowledge, the peace about what I decided to do, which may not be the same for everyone. It was in my situation. Yeah.

SPEAKER_03:

Isn't that amazing? Because of all the times that you went and were discouraged or it didn't meet your need, he used something that had always been there to prepare you to be able to handle what was coming, even just a couple hours later. It amazes me how faithful he is. And and how we can trust him to do that, to just bring what we need right when we need it. Exactly. So, what would be one thing that you do to live content, love well, or care without regrets?

SPEAKER_01:

So many caregivers seem to have guilt, especially when it's over. And I tell them, I truly have no guilt. Yeah, me either. I have no regrets. I did the best I could under the circumstance. You're not gonna make a decision that's gonna change their outcome. Yep. And I could not have loved or cared for Don more than I did. So I have no, no regrets. And right now I'm in an unusual season for a woman my age. I'm a newlywed. God was so faithful to me after Don died. I prayed I would find a new man in my life, and God provided a wonderful husband for me. And I wake up and I think I I am so blessed. This is an incredible gift that he has given me. So I live with gratitude that God pulled me through some very tough times and I can be confident knowing that he can do that again. No doubt. And that he has lovingly cared for me, placed me in a wonderful marriage. Dennis's children and his son-in-law and grandkids are just wonderful to me. So I have a great bonus family. Yeah. It's very exciting. Great church. We both sold our homes. I lived in Northwest Wichita. Dennis lived in North Kansas City. We both sold our homes, bought one home in the Derby area, and have just started a new life here.

SPEAKER_03:

Yeah, I love that because I think it's so important to be able to grieve, which you did, both while he was here and then once he was gone, but then to be able to have hope that there is life after. And unless we take care of ourselves and unless we learn to live without regret, because regret will turn into bitterness and will turn into ugliness, and then we don't have a life to live once they're gone, then we can't look forward to what comes next. And we can be blessed by what comes next whenever we take care of where we are now and we take care of ourselves. So I think that's really wise to share, to be able to receive the gifts in the moment. And then later, once you're in that other season, to be able to receive the gift that he's given to you then.

SPEAKER_01:

Yes, he has been so faithful.

SPEAKER_03:

All right. We're wrapping up here. What would be one thing you would like to share with a caregiver who's maybe just starting or in the trenches of caregiving right now?

SPEAKER_01:

You are gonna need people. You you cannot do this by yourself. People may offer, say, what can I do to help you? You may be so overwhelmed you don't know. But one thing you are going to need are people. I can confidently say that anyone who told that to me, I found something. I'm giving you something to do. That's what my my stepdaughter even told someone, she said, Oh, Pat probably won't let anybody help her. Oh yeah, she will. She will. Because you can't do this by yourself. And I don't know why you would want to. We were so blessed with friends, with neighbors. Our church was wonderful. Don had two men friends that he had breakfast with every week, and they came even when Don couldn't go anymore. A man invited him to be part of a new men's Bible study. And he went, and so I'm grateful for that, but just you're don't care what your house looks like, don't care what you look like, you're gonna need people to come over. And I know many caregivers think, well, he's not gonna like that if I leave and someone comes and stays with him. Well, there just comes a time when you're gonna have to do it to be able to survive. You're gonna have to be able to go to the grocery store by yourself. Or I had friends where I'd text and say, Could I come over at 815 this morning? And then I'd show up at 815 and set my alarm for 35 minutes, and as soon as they'd go off, I'd have to run out of the house. You know, people didn't care. A group of women came and met at my house for a disciple group.

SPEAKER_00:

And you were just going to need them. People be blessed by them.

SPEAKER_01:

I've had many sweet times with friends and with family, especially in the last days with John, that we could all share that is going home.

SPEAKER_03:

Such wisdom. I don't know what the barrier is to accepting help, and especially from those that have always been a part of your life. But get over it. Whatever that barrier is, find a way to get over it. Allow people to love you. Yes. And in order to truly do that, we have to be vulnerable and admit that we need it. Sometimes I think it's more pride than anything else that we just think we can do it on our own, or we don't want them to be uncomfortable or whatever. I don't know what the excuses are, but um allow people to love you. Allow people to love the person you're caring for. And don't get in the way of that. Years ago, someone told me when you tell someone no when they want to do something for you, you're robbing them of the blessing. Exactly. I like to do things myself, but no, they want to bless me. They want to do this. They're being blessed by doing this for me. I need to receive and just say thank you. I appreciate that reminder, Pat. I think it's really important. Thank you so much for visiting with me today and just sharing a little bit about Dawn and your journey and just how the Lord really blessed you. Yeah, thank you. Thank you so much for joining us, listeners. And I just want to say I love being able to share stories of hope with you on a C Stuff Caring podcast. But I need stories. I need you. I need your story, and so do all the other caregivers out there. If you have ever thought I could have a conversation with Raina, I could share with her how God shows up for me in my caregiving. Do it. Reach out to Raina at a seasonofcaring.com. I would love to have a conversation and share with you how you could be a guest on the podcast. So do it now. We need your story. We need to hear how faithful God has been to you. Thanks again for joining us for Stories of Hope with Pat and a Season of Caring podcast, where there is hope to live content, love well, and care without regrets. If you have legal, financial, or medical questions, be sure to consult your local professionals and take heart in your season of caring.

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Rayna Neises

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