How to Talk to Kids About Dementia: Pinkie's Turnabout with Sue Lloyd-Davies

Welcome back to Ask Dr. Mia. And today I am excited to talk with Sue Lloyd Davies. Sue is an author of the book called Pinky's Turnabout. This was a really fun one for me to read. It is a middle grade book about a girl who is taking care of her great grandmother who is living with her and her mother with dementia. And Sue lives in Gulfport, Florida, where she has a fuzzy rescue cat, Arlo, and she's in a really quirky town. And her book was inspired by her own family history of a loved one with dementia. So welcome to the podcast, Sue. Thank so much for having me, Dr. Mia. I really appreciate it. Thank you, Sue. So first of all, how did you get the inspiration for this book? Right, there were two catalysts for writing Pinky's Turnabout. The first was my mother who called us one day and said, I'm coming to live with you. She had a standing invitation from us and so we were delighted, but we were also very surprised because she had lived for 40 years in a small town in South Dakota and she had lots of friends. She was very involved in her church. She had a quilting club, a craft club. She even had a boyfriend. So we were surprised but delighted. And uh the first month she was with us, she organized her room, she helped cook meals, she potted plants on our deck. And she was a very active and joyful member of our family. But within a month of joining us, She fell and broke her hip. And within another month, she had full-on dementia. And I was completely unprepared ah for the challenges that came from that. uh She did not know who I was. In fact, she thought I was someone that she really disliked from her past. And so I instantly became the enemy. So here I was, well, and first of all, she was living with a stranger, but so was I. And here I was the person that was bathing her and helping her get dressed and managing her diabetes and pretty much doing everything for her. And yet I was... hated. And it was a really tough, tough time for us. I was, I made a lot of mistakes. And I was, I was hurt all the time. Until I learned how to manage my own emotions, which is a really important part of that journey. But she, she would hide $5 in her shoe. and accuse me of stealing $5 from her purse. Or she, I would have dinner on the table at six and she would say, it's too late, I can't eat now. But no amount of pointing to a clock would convince her that it wasn't 10 o'clock at night. So ah we were very lucky in that within a few months, we went to uh Doctors and eventually were introduced to the Exelon patch and that patch Helped erase some of her paranoia and she started to know who I was again, but she was never the same uh Fast forward a couple of years and I volunteered at the local elementary school here in Gulfport and Met mentored a young girl. She was 10 years old and her parents were not involved in her life. She lived with her grandmother and her great-grandmother. And she had a lot of caregiving responsibilities at home and missed a lot of school as a result. And here she was. She had this wonderful, open personality. She was an avid reader. She was very smart. And yet what I realized is because of her circumstances, she would never be able to take advantage of the opportunities that her classmates had. They would just pass her by. And so I wrote Pinky's Turnabout because of my mother, but also because of this young girl. She was one of almost a million and a half children who helped take care of a grandparent or a great grandparent within the same household that they live in. They are often very isolated and don't even realize there are other kids in the same position that they are. So I really wrote Pinky for them. Pinky is uh funny and she has a big personality and ah she makes a lot of mistakes and that's just like them. Yeah, yeah, I really enjoy reading about Pinky. And I think the book is fun. You know, even though we're talking about really serious issues of taking care of a loved one with dementia, but I felt like having a daughter who is nine and a half, almost 10, I feel like Pinky was really representative of kind of the things that my own daughter goes through, you know, issues with friends and you know, missing her best friend who's away at camp and, you know, maybe having a friend or having a person in her school that she didn't like very much and learning about, you know, people who may not actually be the person that they seem at first. But I thought the details that you included about Pinky's great grandmother in terms of her behavior and, you know, the day and night reversal and her feet always being cold. Just all of the things that I know is just uh such a part of taking care of an older adult who have medical issues, diabetes in addition to dementia. But I just thought all of those really were little nuggets of things that really helped connect with the readers. That's really wonderful to hear. That's exactly what I was hoping for when I wrote the book. So thank you. Yeah, thank you. I guess, you know, along the lines of, you know, kids who might read this book and uh understand that they have other people who might be taking care of a loved one, what kind of advice would you give to kids or, you know, perhaps their parents who are listening? Yeah, for kids, it's most important to understand that this is a disease that drives a lot of the behavior and the things that their grandparents or great grandparents say and do. um These changes are often something that kids believe are due to some behavior on their own part. And of course, that's completely untrue, but you know, kids, kids just take these things to heart. So if their loved one blames them for something unfairly or just acts out or embarrasses them in front of their friends, these children feel that somehow it's their fault. So they need to understand that this behavior is uh as a result of a disease. They also need to feel that they have permission to talk about the emotions that are roiling inside them over dealing with all these challenges. that they might feel, of course they're going to feel sad because they've lost the person that they love, but they might feel resentful or angry and then have guilt as a result of feeling those things. And I think they need permission from adults to be able to talk about those feelings and understand that adults feel those same things. And we sometimes feel guilty about it too, but that that's very natural and normal. And I think the other big thing is that adult caregivers, primary caregivers are so busy just with their everyday responsibilities when they're taking care of someone with dementia, that they often don't see or forget to acknowledge all the little things that kids do in that household to pick up the ball when that primary caregiver is too busy. They might fetch a blanket when great gran is cold, just like Pinky does, or fix her a snack. or play a game with her, which is so important. Just some kind of engagement is really important. They might also have to come home straight from school because maybe mom works and great-grand needs somebody to just be there to watch over her. So the kids are the silent sentinels. So they give up going home with their friends. um And maybe that primary caregiver doesn't have time to take Johnny to a school dance or to a football game. And so these children make sacrifices too, and they need to be acknowledged and thanked because what they do is so important. really enhances the lives of these grandparents that they are helping to take care of. Yeah, absolutely. Thank you. That was really, really impactful. And I think from reading the book, I could totally see Pinky's different emotions. know, there's the, I wish great-grand would, you know, be the same person that she used to be baking cookies and not the person who is confusing Pinky with her grandmother who has passed. And uh could see her guilt and I thought it was particularly really emotional when her Pinky's mom, who was the primary caregiver, acknowledged how much Pinky was helping and how she said that, you know, I couldn't do this without you. I thought that that must have been so great for a child to hear and just acknowledge how much the whole family is supporting the person living with dementia. And I know, you know, as a when my mom was dying from cancer, that talking with my daughter, who at the time was seven, uh was really important to me, even though it was difficult for me to talk about it, I just knew that I wanted to be able to help my daughter navigate the process because she knows less than I do as an adult. and support her and hearing kind of her grief. um It's a very, it was a very, I don't know how to describe it. It's almost like a meta grief. It's a grief of my own and a grief of seeing my child grieving my mother while I'm also grieving the loss of her. uh even before she died because we knew she was going to pass soon. So that part of grieving, think it's something that it's not often talked about. make a huge point when you talk about grieving before they go and especially with people that have dementia because they really aren't the same person they used to be. And oh it's the amount of sadness that you go through and maybe some fear. It's they're there, but they're not there. Yeah, very difficult. I'm sorry you had to go through that. Well, I think it's just one of the inspirations to continuing to do this podcast and making sure that other sandwich generation caregivers feel like they're not alone. And I appreciate you kind of writing this book really for the kids who I think uh I know in my past conversations have really been about the adult child. ah of someone who is living with dementia and their grief, but there hasn't been a lot of discussions in terms of talking to their children about their grandparents. And I grew up with my grandparents in China, so I know how uh impactful that relationship is, ah both for me and I think for them. And I know there are research showing that, you know, grandparents who are spending time with your grandkids or have healthier lives because they just get invigorated by uh being with young children, but balancing kind of the needs of different people, especially when someone is perhaps not behaving in a way that is who they are as a person. Yeah, um I appreciate that you also. brought in something that I thought was really kind of magical, a cat by the name of Jack, um who is able to communicate uh with great grandma in a way that perhaps people are not able to. And I know Pinky has spent a lot of the book trying to figure out how to keep Jack. with all of the other responsibilities that she has and her mother has, and their financial challenges of owning a pet, what do you think about balancing the person living with dementia and having a pet versus the responsibility of taking care of a pet? Right, you're right, Pinky's family is facing that all the time and they know that having a pet, a pet deserves some kind of attention and uh sometimes they can be very expensive. If you're lucky, they're not, they don't get sick. And all those things have to be taken into consideration when you think about having one. But pets are, animals are just amazing. They really... give you unconditional love, which isn't very widespread. uh And so therefore, it becomes all that more precious. And we know that just having contact with an animal, in this case, cat, petting a cat, caressing, cuddling with an animal, helps to heal people. not just emotionally, but physically too. They've done research about that. animals, know, not all animals are gonna be like Jack where they can talk, but I think they do teach empathy and they teach us to communicate with someone who maybe can't communicate their needs very well on their own, which happens a lot with people who have dementia. So with animals, we often have to intuit what they need. And it's the same with someone who has dementia. So we learn, we learn what their needs are. Children learn empathy. They learn caregiving when animals are involved. And animals take care of us too. I think that's the biggest thing to remember out of this. They're just amazing. when it comes to giving and taking love. Yeah, yeah, I thought the relationship between Jack and uh great grandmother was really special in the book as well. um All right, well, how do you in what ways do you want families to use your book to kind of generate conversations in their own homes about dementia? In the back of the book, there are discussion questions because it's so important for families to sit down together. And a lot of my first readers are telling me that they sit down with their grandchildren or their children and are able to read this book together. And that opens the door to conversation, to understanding. and to allowing some of those emotions to come out that sometimes a child might be harboring and we just never know about it because we're too busy. We're just too busy caregiving and we don't know what's going on with them unless we ask and give them permission to talk about it. So, ah and I think a big thing that comes out of the book is just knowing that as a child, you're not alone. in those circumstances in your home, that if maybe you feel embarrassed by your grandparent's behavior, or maybe you feel protective and you want to shield them from the judgment of other people, Pinky goes through a lot of that. She really tries to protect her great-grand from other people, and it's hard to do. um And sometimes she's worried about introducing new people to her or letting somebody, an old friend in the door. um There is just so much that's isolating that goes on when you are caregiving for someone with dementia. And I really wanted kids to have someone to relate to, someone that's going through the same things they are. uh and expressing those feelings and making mistakes. It's really important for them to understand that they're going to make mistakes and that there has to be a lot of forgiveness involved because adults make mistakes too. Yeah, I was actually just going to say a lot of adults make mistakes too. No one is the perfect caregiver. And I think sometimes caregivers think that if they only just do things perfectly, then things wouldn't get worse. And I have to remind them, actually the disease is going to make things worse, even though you're doing everything you can. But I think that's where that guilt, some of it may be unnecessary in that some people feel it. have unrealistic expectations of themselves. And I thought your description of Pinky's mom who has a full-time job and is taking care of Pinky and her grandmother in the same home was really ah accurate in the sense that she's just so busy and so tired. And I just feel the sense of exhaustion in all of the primary caregivers that I see. ah And thank you so much for writing this book. Just for our listeners, where can people find a copy of Pinky's Turnabout? It's in bookstores, it's online, in online bookstores, it's everywhere. It's a traditionally published book. And uh so it's available everywhere you find it. Great, and I'll link to the show notes about this book as well from Regal House Publishing. And thank you so much for joining us, Sue. Thank you for having me, Dr. Mia. I really enjoyed talking to you and thank you for all the good you do for all of us out there. We appreciate it. I enjoyed the story and enjoy talking with you as well. 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