A Season of Caring Podcast
A Season of Caring Podcast is a place to find hope for your Season of Caring. Pointing listeners to the hope they can find in God even in the busyness and loneliness of caregiving. I want you to know that I see you and God sees you. What you are doing is not only difficult, and often overwhelming, but it's also one of the most important and rewarding things you can do.
The guests featured are both everyday family members who are caregiver survivors and those who are still in the middle of their caring season. At times, you will meet professionals who bring their experience and compassion for you to our conversations.
I want you to feel encouraged and hopeful after our time together, so you can spend this season with no regrets, living content, and loving well.
A Season of Caring Podcast
From Clueless to Guide Navigating Dementia Caregiving: Stories of Hope with Debbie Compton
Join us for an enlightening conversation with Debbie Compton, a veteran caregiver and advocate, as she unpacks the emotional complexities of caregiving for loved ones with Alzheimer’s, Parkinson’s, and vascular dementia. Through personal anecdotes and powerful insights, Debbie shares her transformative journey from a successful business career to a passionate caregiver, highlighting the unexpected lessons she learned along the way.
In this episode, we delve into the heart-wrenching yet inspiring stories that illustrate the dual nature of caregiving: the joy intertwined with sorrow. Debbie recounts pivotal moments that not only challenged her resolve but also deepened her connection with her loved ones, showcasing the resilience and love inherent in caregiving. As she shares practical strategies for maintaining positivity, we discuss the significance of focusing on gratitude and support.
This episode is a profound reminder of the love that exists in even the most challenging caregiving situations. Whether you are currently in the throes of caring for a loved one or seeking to understand the journey, this conversation will uplift and inspire you. Tune in for Debbie's expert insights, heartfelt stories, and guidance on how to embrace this journey with grace and hope. Don’t forget to subscribe and share your thoughts with us!
Welcome. This is Raina Nises, your host of a Season of Caring podcast, where we share stories of hope for family caregivers breaking through the busyness and loneliness of caregiving to see God even in the midst of this season. Today, I'm excited to introduce you to Debbie Compton. Debbie is a passionate three-time primary caregiver for her parents with Alzheimer's, parkinson's and vascular dementia. As a speaker, she brings hope and laughter to caregivers in dementia issues, easing the stress of her audience.
Speaker 1:Since 2017, debbie has been a community educator for the Alzheimer's Association. She has authored 10 books, including Caregiving how to Hold On While Letting Go, where she shares her hard-earned knowledge, perspective and faith. Debbie's latest book, the Caregiver's Advocate A Complete Guide to Support and Resources, is a collaboration between 21 authors in four countries. It's an international bestseller and an Amazon number one new release. Debbie is the founder of the Purple Vine, where she supports caregivers through one-on-one Zoom consultations, a blog, online trainings and a weekly newsletter. Welcome, debbie, I'm so glad to have you here today. Thank you for having me. Raina, it's good to be here. So I know you have three different stories, but introduce us a little bit to those that you've cared for and share what those seasons look like.
Speaker 2:Sure, well, I was in business, business leadership, traveling coast to coast, loving life, had my plan in place. I had been with the company for 15 years and I planned on retiring there. My mom had already been diagnosed with vascular dementia, but she was very high functioning and I didn't know enough to realize that there was a train coming on that journey. So then my dad developed Parkinson's and started requiring more care. The big warning sign there was that when I was out on the coast which I actually live in Oklahoma, right in the center of the US, so I was on the East Coast when dad accidentally took mom's pills and had to be rushed to the hospital. He was nearly comatose. He had low blood pressure, she had high. Could have been fatal right there, but praise God it was not.
Speaker 2:Another time mom passed out at the daily living center, had to be rushed to the hospital and I was on the other coast. So the third straw my mother mental clarity to walk next door to the neighbor's house that she'd known for over 40 years. Instead she got in her car and sat and waited until her daughter got home from work, possibly seven, eight hours, and only by the grace of God she survived. That was my wake up call. That was the realization that something had to be done. They were not safe any longer, so I became a three-time primary caregiver for the three of them. So I started studying a lot, learning everything that I could about their diseases. They're all different forms of dementia, right, so they have some similarities, but then there are differences as well the diseases.
Speaker 2:So I studied and read and researched and tried to do the best that I could, learned so much on the journey. And then when my mother-in-law a few years later now we had her living with us at that point in time, when she was passing in our home I brought hospice in much too late because I didn't know any better. Had them come in, they saw some of the things that my husband and I had created to make life safer. And the little hospice nurse said where did you read about that? And I just laughed. I'm like I didn't read about it anywhere. This is called survival. And so she said the sentence that changed my life. She said other caregivers need to know about this. It would really help them.
Speaker 2:And it hit me. I was just. I was stunned because I thought I'm the last one to the party. Everybody else has this figured out, you know. Everybody else knows what they're doing. It's just me fumbling around out here in the dark and I was so wrong. But that's how I felt.
Speaker 2:So I went to bed, I prayed about it, went to sleep, woke up the next morning and knew this is why I went through this, so that I can help other people, because I can relate to them whether they keep their loved one at home, like we did with my dad in his home, because he would not move in with us very stubborn man and so we had to come up with a way to honor that and still take care of him. We moved my mother-in-law in with us. She passed here in my home and then my mom I had to put in a memory care facility in the middle of COVID and it broke my heart. I felt like I let her down. This is horrible, but she outweighed me by 35 pounds and she was passing out and it was not a sustainable situation.
Speaker 2:So I cried and cried and cried, put her in the memory care and then I realized that was my perception that I was letting her down. She had a great time. She was surrounded by friends, new people, activities to do. She had a great time. It was just me that was feeling all this guilt and all this upset and everything else that you can imagine. So I founded the Purple Vine, as you mentioned, and I just try to help caregivers in any way that I can, predominantly through speeches and one-on-one Zoom consultations.
Speaker 1:It is that journey that all of us are on. There are a lot more resources than there were when we started our caregiving with my mom, back in 86.
Speaker 1:But definitely within even just the last 10 years, I think there's been significantly more books published and more things available to help families. But I do think that one of the reasons why I love support groups is because living it and talking to people that have lived it I think can make such a powerful impact on your caregiving season and those feelings, like you said, that the guilt or the struggles that you're having. Others can express that as well, and it really does help us to get a different perspective and to be able to see things from a different mindset. So share with us a favorite caregiving story?
Speaker 2:Oh goodness, A favorite one or a? I'll tell you about a dramatic one. How's that it was.
Speaker 2:Oh, this was just. This was so dramatic. But I was scrubbing the toilet for the third time that day. My mother-in-law couldn't find it, couldn't see it. I didn't know the things that I know now that you can do to actually make that much better. So I was scrubbing the floor for the third time that day. I'd been up about five nights in a row with very, very little sleep and I was exhausted Mentally, physically, emotionally. I was just worn out. And so I'm crying while I'm cleaning this and I'm thinking I don't know how much longer I can do this. I don't know what I'm going to do.
Speaker 2:And then the scriptures came to me Greater is he that is in me than he that is in the world. I can do all things, even scrub this bathroom floor for the third time, through Christ, who gives me strength, and his mercies are new every morning. Great is thy faithfulness. That's Limitations 323. That is one that all caregivers need to remember. The others are great too. They're wonderful, they're very helpful. But Limitations really spoke to me because, as a caregiver, you have to, when you go to bed, put that day to rest. It's gone. You can't change anything that you did wrong, anything that you wish you would have done differently. A word spoken harshly, you cannot change it, so let it go and just accept the forgiveness and try to do better and start each day fresh. Each day is a new day. That is my biggest tip for surviving caregiving and thriving in caregiving yeah, definitely.
Speaker 1:And I love that his word. It applies and we really can run to it and find those truths that can make such a big difference. So you just said how you had to kind of make it up as you went. What would you say would be the most surprising thing about caregiving for you?
Speaker 2:Hallucinations. I had never been around anyone who had hallucinations before. And then dad is suddenly telling me about aliens tunneling into the house and I'm like what?
Speaker 2:And so I researched and researched and all I could find was don't argue with them. Okay, well, that's a good starting point, because you don't want to argue with them. You should never argue with someone with dementia. You're not going to win. And not only that they see, hear, smell and believe what they are experiencing. So who are you to tell them that it's not true and that it's not real? So sometimes and this is a hard one for caregivers, and I don't mean to stomp on toes, but we can be a little bit arrogant, thinking that, hey, I know reality, I'm grounded in reality Well, guess what? We need to walk in their reality. We need to understand that this is real for them. So don't argue with them and try to live where they are at that particular time will really help as well. But that was surprising. I was like holy cow. I am not prepared for aliens.
Speaker 1:Yeah, it's interesting. My mom was nonverbal about probably three years into her diagnosis. She was very she was just 53 when she was diagnosed and she would talk to things, but because she didn't speak English that was my experience was a lot of gibberish that you could tell she was trying to tell somebody something or trying to experience something, but you couldn't understand her. So that probably helped me not want to correct because there was really nothing I could do but you couldn't understand her. So that probably helped me not want to correct because there was really nothing I could do and I didn't know what she was seeing or what she thought she was seeing.
Speaker 1:But it is such a different experience because we are so used to just being in a common reality with people and so this is right and that makes them wrong because we can't join them. But we can participate and, like you said, the anxiety and the stress that comes from trying to correct or trying to make it not be it can be so difficult. So handling that piece is definitely challenging. Did you find medications were helpful or was that something that you tried?
Speaker 2:Yeah, yes, I laugh because oh my goodness, there's one that I would never give anyone. I don't want to. It was just her adverse reaction to it. But my mother-in-law was hallucinating a lot too, and so I was in the kitchen cooking supper and all of a sudden she's laughing hysterically, which can be scary when there's no one else at home. It's you and her alone. And all of a sudden she's just laughing and laughing.
Speaker 3:And so and she's like oh, he's so cute, he's so cute, look at his tricks.
Speaker 2:And she says Debbie, come look at his tricks, and so I walk in there and I'm thinking I don't know what to be prepared for his tricks. There's no one here, what are we looking at? But I noticed that she's looking down. So okay, it's shorter. So I look down. He's the cutest little pup, he does the best tricks. And I'm like, yes, he is, he's adorable, you know. And so then I had to laugh with him myself because he's the perfect pet. You don't have to feed him, water him, take him out, nothing exactly but she, just she would just love it.
Speaker 3:She's like he's doing tricks again and I'm like, oh, that's great, that's awesome and he made her happy, which is which is huge and I didn't have a dog at the time.
Speaker 2:But hey, that's okay, yeah, that's great. As long as you're happy, it's all good. And you talked about the non-verbal, so I want to. I'd like to put in there real quick a real happy moment that I have with my mom when she was nonverbal. It was towards the end and she was in this facility. As I told you, I had to put her into that just broke my heart. But she was great and it helped our relationship too, because I got to be the daughter again. I didn't have to be the mean person who was making her take her medicine, take a bath, eat her food, do the things she didn't want to do. I got to just be the fun one and I got to bring her strawberry shakes and play music and dance with her, and so it was awesome.
Speaker 2:And so when she was nonverbal, I thought my challenge was to bring joy to her life every day in some way or another. Bring some moment of joy. And so I knelt down in front of her because it's real important to get eye level with them. Don't stand up above them and expect to talk to them. They can't see you. So kneel down, wait until you get eye level, wait until they see you and you know when they connect. And they see you. You see that little glimmer. And so then I'd puff out my cheeks and stick out my tongue, twist my head, make all kinds of crazy faces at her, and then she would make the crazy face back at me and we both just laughed hysterically. It was awesome. I never expected her to do that, but it was so much fun. And so we'd laugh and we'd have that connection, even though we didn't speak. She couldn't speak at all, but she still had joy in her life.
Speaker 1:Yeah, definitely. My mom loved to listen to Elvis and Nat King Cole and she would sing not necessarily words, sometimes words, but she would sing along with them, clap her hands with them. She just really engaged in that and lived about eight years not being able to tell us what she needed, learn to read that body language and learn how to communicate in the way that she could. And, like you said, I think the joy is the thing that always will stick by me is just that, no matter where in the journey, she was still very joyful and I was so thankful for that that we were able to help maintain that and help to keep her stress level down so she could enjoy where she was.
Speaker 1:So share with us and I know there are so many times Beth share with us, one time that stands out to you that God really showed up for you in your caregiving.
Speaker 2:I think. Well, one time that I really remember I was really tired again because dad had passed away. He'd been a couple of years now. So I had my mom and my mother-in-law and I would take the two of them to the grocery store and to the beauty salon and different places and stuff, which was a very stressful event.
Speaker 2:You know, because they're both prone to wonder and you're trying to keep like hurting chats and you're going come back, come back. You know, no-transcript hadn't been able to say a sentence in a long, long time, at least six months and she said your dad is proud of you. And I just started crying. And it was just. And she did too, and I said, and so I asked her, I said do you, do you talk to dad? And she nodded, yes, and I said well, tell him, I love him. And it just, oh wow, so powerful, so powerful Because we just we don't know what's going on in the spiritual realm and we don't know about all the things going on around us.
Speaker 2:But that total moment of clarity just blessed my heart in an immense way, and God knew that I needed to be uplifted, that I had been beaten down, because, see, when we focus on the problem, we get beaten down.
Speaker 2:When we focus on the solution, jesus Christ, then we're uplifted. When we focus on the positive, you can train your brain to look for positive, and something that I really encourage caregivers to do is to write down three things every day at the end of the day, three things that you are thankful for or that were funny, that happened to you that day, and after a few days, your brain will develop new neural pathways and it knows that, hey, you're going to ask me this. So I need to start looking for things that happened throughout the day that were good, that were joyous, that were. It can be little tiny, it can be big, it can be like what I just shared with you, but whatever it is, because when you focus on the positive, set your mind on things above, then your life is going to go so much easier and it just it's huge. It makes such a huge difference.
Speaker 1:Yeah, I love that scripture because it does remind us of something that is, I don't know easy is the right thing to do, but simple. It's simple to do, focusing on the things that I'm not. But yet we make it hard or we miss it, and it can have such an important impact, and I do love those moments of clarity. Like you said, God always gives us those times that are just to really hold on to. I will never forget my dad, probably three or four days before he passed away. You know, it's one of those things when you're caring for somebody with dementia, you don't know when the last time will be.
Speaker 2:Right.
Speaker 1:So when was the last time you heard them say your name?
Speaker 1:Well, the last time, you don't know it was the last time you heard them say your name. Well, the last time, you don't know. It was the last time, right, right, you don't even necessarily think about it until it's been a really long time, maybe even two years or more, since my dad had said my name. Now he would call me babe and he would, you know we would interact. He was still talking, but like saying Raina and getting my attention, and about five days before he passed away I was standing at his bedside and someone else had come in the room and I kind of moved to the side and I was out of his peripheral vision. He engaged with them and then he kind of looked around where did Raina go? And I was like it was just so amazing because for so long he didn't remember my mom, he didn't remember he had kids, he didn't remember all of those things. But just that blessing of all of these years of caring for him he does still know in his heart of hearts who I am.
Speaker 1:And so I just love it. Whenever we have those glimmers, that can just be something we hold on to forever.
Speaker 2:Exactly. It's so amazing and it is such a blessing for God and things don't happen by accident. When my mom was passing, I thought we were in the nursing home. I thought somebody had their radio turned up loud because we were hearing old time gospel music which she loves and we all enjoyed it and she was in and out you know, pretty much not really with us at that point in time. Her eyes were open but there was no recognition and things going on and she kind of had a little tiny smile come up on the sides of her face and we were hearing this music and so we all just started singing along with the music because we knew the words and it was a wonderful time of fellowship for us. And then I went to go out and say something to the nurse and so I opened her door and there was a quartet out there. It was live. They were singing out in the main area which was just outside mom's room, and I thought, thank you God what a blessing.
Speaker 2:That's just so fantastic, because this was just like a day before she passed away and she hadn't spoken anything that made sense in about a week Nothing, you know a few garbled words that we couldn't make out. And that day she said, and she hadn't known how many kids she'd had for years years several and.
Speaker 2:But that day after we were singing and had all the music going and all this kind of stuff, she said I love my four kids. And those are the last words she said. I'm like, wow, that's a mom, that's a mother who loves her children. We were all there with her. It was a fantastic time, but I just thank God for that time of worship to send her on her way. And my mother-in-law had the same thing. She was here in our house and we had family all gathered around. So I brought in all these folding chairs and different chairs and we had them sitting all around the bedroom and we all sang Christian songs and things the same way. But and she just she laid there. She was comatose for about 10 days, but they can still hear.
Speaker 2:And so then we finally decided you know what, let's take a break, let's all go out and eat. And so her youngest daughter stayed with her and the rest of us went out to eat and she passed away. So I think she was waiting. She might have been saying in her mind get out of here so I can go.
Speaker 1:Well, she might have been enjoying having her around so much. Yeah, Didn't want to do it, she had her concert. Yes, exactly. So tell us what's one thing that helps you to live content, love well and care without regrets.
Speaker 2:Oh, what is one thing it's very hard to narrow things down it is prayer. I don't know how anyone gets through caregiving without God. I just don't. I don't understand it, because he brings me such comfort. His scriptures bring me comfort. The word, the songs, spiritual songs sometimes it's the old hymns, sometimes it's worship music, whatever it is, but it brings me peace and contentment and joy in my heart. And if you're depressed and you're sad and you're having a rough day, put on some Christian music. It's very hard to stay depressed when you're singing praises to the King. And so I think music, music and prayer, see, that's two. I already went to music and prayer and worshiping God and his word.
Speaker 1:I think music can be so helpful. I think sometimes, when we get into a place where we're feeling stressed and we're feeling overwhelmed, we forget to look to something as simple as just turning praise music on. Yes, it's right there and it's easy to do, but we don't. That's your strength. Don't shut it off. Go to it, yeah. So, as we come to an end here, what would be one thing that you would want to share with those that are caregiving, either early in their journey or halfway through? What would be an encouragement that you would offer them?
Speaker 2:I would say let go of perfectionism. Don't try to keep things perfect. They're not going to be and it. Don't try to keep things perfect. They're not going to be and it's okay. And don't be so hard on yourself, because we do. We tend to. I know I compared myself to these workers who did so great with mom until I realized they work eight hours and they go home and they have rest and they have a break. I am on 24-7. A whole lot harder to maintain that 24-7. And God never called us to perfectionism. That's not biblical. He never said you should be perfect. We should do the best that we can but, relying on his strength, we can always do better.
Speaker 1:Yeah, definitely. It's so important to really be thinking about and realizing what's realistic, and we do. Oftentimes, people are looking from the outside, thinking I don't know how you're doing all that you're doing anyway, and but we're looking at it, looking at all the things that we didn't get done. So it is really important to let go of that. So tell us, debbie, how can we stay in touch with with you what would be one way for my audience to find your books and be able to learn more about all the things that you're doing you can visit my website, thepurplevinecom, because on there you'll find a lot of articles with information and help and support.
Speaker 2:You'll find free resources Many of my books are listed there, so that's the best place to go and there's also the weekly email that I send out. I don't send it every day, because caregivers do not have time to read an email every day, but that would be a great way to reach out to me, and from there they can schedule a Zoom consultation, and I would really encourage them to do that. The first one I do for free, just so that you can see if that's something that fits your needs. I can help them find creative solutions, things to make your life safer and easier, because that is what I'm all about. That's the mission that God has put on my heart. After going through this three times of caregiving, I got my certifications after two loved ones passed away and learned more things that would have been super helpful had I known back then. Yeah, so I can save you a lot of time and a lot of heartache, deb at thepurplevinecom.
Speaker 1:All right, very good. Thank you so much for being here today. It's been great to be able to visit with you and just share a little bit of what your journeys look like and your wisdom.
Speaker 2:Thank you, I appreciate the opportunity to share.
Speaker 1:Thank you, listeners, for joining us today for Stories of Hope with Debbie. A Season of Caring podcast has been created to share stories of hope for living content, loving well and caring without regrets. If you have legal, financial or medical questions, be sure to consult your local professionals and take heart in your season of caring.
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