A Daughter’s Promise: Love and Loss in Lewy Body Dementia with Kimberly Pellicore - Episode 183

In this moving episode of the Caregiver Relief Podcast, host Diane Carbo sits down with author and caregiver Kimberly Pellicore. Together, they explore the "hard and holy work" of caring for a parent with Lewy Body Dementia (LBD)—a journey marked by mystery, "show timing," and the profound sting of anticipatory grief.

Whether you are in the trenches of caregiving or just beginning to notice changes in a loved one, this episode serves as a reminder that you are not invisible, and you are not alone.

🎧 Episode Highlights

• The "Handbag & Peanut Butter" Mom: Kimberly shares a tender look at who her mother was before the diagnosis—an intelligent teacher with a love for meticulous planning and peanut butter and pickle sandwiches.
• The Mystery of "Show Timing": Why patients can appear perfectly healthy for a 15-minute doctor's visit, only to have the "wheels come off" once they leave.
• The FBI & The Mirror: Navigating the heartbreaking moments when a loved one no longer recognizes you, or becomes paranoid due to LBD-induced hallucinations.
• The Guilt of Memory Care: Making the difficult decision to move a loved one into professional care when the physical and mental toll on the family becomes too high.
• Anticipatory Grief: Understanding the "tiny losses" that happen every day long before the final goodbye.

📋 Podcast Outline

1. Early Red Flags 🚩

The first signs weren't memory loss, but a breakdown in meticulous organization. Kimberly recalls her mother struggling to fill out a calendar and later being found confused by her own medications.

2. The Long Road to Diagnosis 🏥

LBD is famously difficult to pin down. Kimberly discusses the role of neuropsychological testing—a grueling 4-to-8-hour process designed to test cognitive endurance beyond the limits of "show timing".

3. "Suck it up, Buttercup": Shifting Perspectives 🔄

When her mother stopped recognizing her—even mistaking her for an FBI agent—Kimberly learned that being a "safe person" was more important than being a "daughter" in that moment.

4. The Decision for Memory Care 🏠

The transition to memory care was catalyzed by a frightening incident where Kimberly’s mother locked her husband out of the house, not recognizing him after 50 years of marriage.

5. Surviving the Darkest Moments 🕯️

Kimberly shares how writing, faith, and finding a supportive community helped her process the trauma and find her identity again.

💡 Key Takeaways for Caregivers

"The disease is something that has become a part of your loved one’s life. Your loved one is NOT the disease."

• Logic is a wasted tool: You cannot argue with a hallucination. If they see something, their brain is projecting it; validate their feelings of safety instead of proving them wrong.
• Permission to Grieve: It is okay to feel sadness at the "empty chair" during holidays, even while your loved one is still alive.
• Community Matters: Surround yourself with people who offer positive feedback. If a support group leaves you feeling devastated instead of helped, it's okay to walk away.

📖 About the Guest

Kimberly Pellicore is the author of A Guide for Lewy Body Dementia Caregivers: Caring with Compassion. Her book balances the science of the disease with "boots on the ground" advice for the exhausted caregiver.

• Website: kimberlypellicore.com
• Book: Available on Amazon

🌟 Don't forget to practice self-care!

As Diane says, "You are the most important part of the caregiving equation. Without you, it all falls apart."

Podcast Episode Transcript

Diane: Welcome to the Caregiver Relief podcast. I'm your host, Diane Carbo rn, and today's episode is called A Daughter's Promise, love and Loss in Lewy Body Dementia. This conversation is for every caregiver who has felt the heartbreak of watching someone you love change, and yet continues to show up with compassion.

My guest today is Kimberly Pellicore, a published author and caregiver who shares her deeply personal journey caring for her mother through Lewy body dementia. Through her story, Kimberly gives voice to the moments caregivers. Rarely say out loud, the grief, the confusion, the total exhaustion, and the fierce love that keeps us going.

Diane: Kim, thank you so much for taking time to share your precious story with my listeners. I'm glad that you were able to help us today.

Be with us today.

Kimberly: Thank you for having me. I sure do appreciate it.

Diane: Now, before we talk about the book and the diagnosis, can you tell us a little bit about your mom, who she was before Lewy Body entered your lives?

Kimberly: Sure. So my mom was diagnosed at age 69. from there going backward is where I'll reference.

She was a very intelligent lady.

She taught preschool high school and college. Throughout her teaching career, she loved. To shop. She loved find, she knew the worth of finding a really good handbag and was always on the search. For one. It's a valuable tool I learned from her. she loved peanut butter and pickle sandwiches, which has also become one of my favorites.

Don't knock it until you try it.

Diane: my dad ate. Peanut butter pickle with Ritz cracker.

Kimberly: Oh, I'll have to try that. That sounds good too.

Diane: Just, it's a Pittsburgh thing, I think, but yeah, I didn't mean to disrupt you,

Kimberly: but No, you're fine. You're fine.

Diane: Tell

Kimberly: us more about

Diane: your mom.

Kimberly: Yeah. She's just a very sweet and caring lady.

Always super supportive of everything my sister and I did together. Just really taught me what it is to be a good woman and a good mom and a good wife.

Diane: God bless her. Yes.

Kim, do you remember the moment when you first realized something wasn't right? what were those early, signs like for your family?

Kimberly: So for us it was, the only kind of tip off we had, it was in December of 2019. my dad was out of town and my sister and I met with my mom to talk about what we were gonna be doing during the December. Break for Christmas and birthdays and whatnot. She was a very organized lady, loved calendars, always liked to plan ahead, and very meticulous in her planning.

And when we sat down with her to plan, we'd be talking one-on-one and she, we'd say December 4th at 4:00 PM she's, oh, that sounds great. I'm open that day. And then she would start writing down on November 28th or a different date than what we said a different time. Which is very unlike her.

And it happened repeatedly a couple times in a row, and then she just kind of got to where, oh, she's been a long day. I'll fill these in later. Let's just do an email and I'll do it later. Which seemed odd at the time. I knew something was a little off, but I didn't give it too much thought.

Diane: Yeah.

Kimberly: And then my dad just started noticing a couple little things, so I had a conversation with her about maybe, going to have it checked out and.

It was a hard conversation to have. I'm not gonna lie, she was really scared, I think, to go have it checked. 'cause I think she knew probably something was wrong.

Diane: Yeah.

Kimberly: Initially the doctor told us it was a vitamin B shortage, which she did have, and she did an injection or two, and we noticed a marked difference.

It was much improved, but that only lasted for a couple of months. And then during the pandemic and social isolation. My dad came in the kitchen one day and she had all of her pills spread out over the kitchen table counter, and just looking at them like she didn't know what they were or what to do with them.

And that's when we started noticing something was definitely off. Off.

Diane: Yes. Yes. Louie body dementia is often misunderstood and misdiagnosed. What were some of the biggest challenges in getting clarity around your mom's diagnosis?

Kimberly: So I think for us, even though it took a long time, I think we were very blessed.

So when we first noticed the vitamin B shortage, she took that, the injections for that, things got a little bit better. Then when things got worse, they went ahead and they did a an MRI and blood work. Blood work came back clean. MRI came back clean and so they referred us to a neurologist.

And I'm speeding this up dramatically because it was during COVID when the healthcare system was already completely taxed as it was. then, we saw the neurologist and she said, you, I don't know if you're familiar with it, but a lot of patients do something called show timing, where when you go into an appointment.

They're the picture of health and organization and

Diane: Oh yes,

Kimberly: it's wild. It's wild. And then as soon as you leave, it's gone. And whatever was there before comes back with a vengeance. And so she was the picture of health during that appointment. But my dad did describe some of the things they were seeing.

So they sent us to a, I don't know how to describe it. Just a professional testing facility that, is here in Texas and

Diane: neuropsychologist. Was it neuropsychology tests?

Kimberly: I'm gonna be honest, I don't remember the testing period

Diane: was Okay. It most likely was Yes. Yes.

Kimberly: The testing period was like four to six hours.

I want to say maybe it was up to eight. It was long. And I think looking back on that is. To test for cognitive endurance, in part because they can only show time for so long before the wheels kind of come off. Exactly. And you see what's going on. So she made it through part of, Four hours and she knew that something was wrong because they had her do puzzles.

They asked about her social life, do you do things with friends? How much are you at home? And it things I think just got a little too real. And so we left, and by only what I can describe as a miracle, we got her back the next day to finish it. She was willing, and then they called later and said, we feel pretty certain it's Lewy body.[00:08:00]

Diane: Wow. you're very blessed that you were referred to a neuropsychologist for the testing because Yes. I can tell you right now that many doctors don't do that and families go through so many things before they get diagnosed.

Kimberly: Yes.

Diane: it's very challenging. It's

Kimberly: heartbreaking.

Diane: Oh, it is. It absolutely is.

a lot of times people are diagnosed with a mental health dis.

Kimberly: Yes.

Diane: Condition first, oh, it's this or that, or it's anxiety. They're just under a lot of stress and

Kimberly: Right,

Diane: and it's sad because our medical delivery system poo-poos people. yes. and reality though, you're only given Medicare reimburses for 15 minute visit.

And what, during that 15 minute visit, you're supposed to tell the doctor what's wrong. They have to assess you. Diagnose you. decide on a treatment or further testing and then document all that before they go on to the next patient. So in reality,it's just we're our doctors don't even, and any patient can look good for 15 minutes.

Kimberly: Sure.

Diane: Yeah. and the show timing is very real. I've seen it millions of times, and, It's just frustrating.

One of the most heartbreaking moments you describe is when your mom no longer recognized you. How did you cope emotionally with that loss while continuing to show up as her caregiver?

Kimberly: So in the beginning it was very hard, extremely difficult.

However, after that, it became clear that I could keep making it an issue that would prevent us from connecting, and that caused her obvious discomfort and heartache. Or I could kind of just suck it up buttercup and move on, because really who I was to her needed to not be important. Yeah. What needed to be important was that I was a safe person, and there were days where she didn't see me as a safe person.

It was, there were days where I was a college roommate or a sister where she does not have or a, I think I was even an FBI agent one day. Like it's just very different. I never was quite sure what I what to expect. Yes. However, as long as I was on the right side of it as a safe person,

Diane: yeah.

Kimberly: That became more important to me than anything else.

Diane: Absolutely. Absolutely. And you just have to, be able to embrace those moments because

Absolutely.

Diane: when she thought you were an FBI agent, Lord knows how she was responding to you, and then that makes so much, it makes so much more challenging to provide care when they're paranoid or afraid of you.

Kimberly: Very much Very much And I think. For her. She liked to do her walks outside, and that became an issue because wandering started to become an issue. And I remember trying to explain to her that we wanted her to go with one of us. Just, for extra safety. And I think I said the word safety and I think that's where the FBI came in because she instantly thought someone might be after her.

Or was I an agent that was trying to help keep her safe And it, it took a while to realize maybe that was a poor choice of words on my part and how to. Redirect a little bit next time, so we wouldn't have that same issue.

Diane: But the next time you say it, it may have a totally different response. you know exactly.

And your word of choice is that, it makes sense to you. But,I love that, she thought somebody was chasing her.

Kimberly: She loved to watch, mystery shows all the time. Of course.

Diane: That's where it comes from. Yes.

Kimberly: Yes. So I have a feeling that kind of flowed from that as well.

Diane: Yeah. Oh, I can't imagine the books I read and watch TV shows what they're gonna say to me, what I'm gonna say to my kids.

your book does a wonderful job of balancing science with lived experience. Thank you. Why was that so important for you to include both in the book?

Kimberly: I knew from the beginning if I was picking up this book and reading it for the first time. when I started out, there wasn't, when I was researching, there wasn't a ton of information.

What was, there was very clinician, or research based in terms of it was at a level that. Didn't necessarily compute to my day-to-day interactions with my mom.

Diane: Exactly.

Kimberly: Yeah. And how to do that better.

So I thought, if I'm a new caregiver that's really at the end of my rope and I'm just really trying to get through and figure out what are the things I need to know.

Diane: Yeah.

Kimberly: That maybe that summary of science in the front would be very helpful and I wanted somebody to do it who really knew what they were doing versus, just what I saw. I wanted that combination of the two so that. They could get both and it gives them a foundation. And if they choose to research more, then they have that opportunity.

But it's just enough in a short period of time because the book is designed for caregivers to be able to read a chapter like while their loved one's taking a quick nap, or, if they have 20 minutes while their loved one is being visited by a friend, it's very easy to go through a chapter. So I wanted the science chapter to be there, but be a little bit, But be somewhat short so that they could go through it at their own pace and have time to really understand it and then turn their attention back to their loved one.

Diane: One of the things I liked about that approach is, our caregivers. our healthcare profe professionals don't have time. They don't know, they don't really know what a family goes through.

Correct. And, you can be talking to a nurse who works in, at the ER and they don't know that people develop dementia and they go through rehab. or Yes. I just did a podcast with an intensive care nurse who teaches the professionals how to do CPR and he never thought about. All the things that we do in long-term care to keep a person alive and never thought about the implications that would make.

yes. Your book, does a really good job of putting things together to make sense and give the caregiver just enough, because their journey may be very different from yours.

Kimberly: Exactly.

Diane: But at least they know that the reason behind some of it, and I really appreciate that.

Kimberly: Yes. that was important to me too because I noticed, you don't want it to ever come from a place where there's a lot of judgment, right?

Diane: Yeah.

Kimberly: We're all doing the best we can with what we have at the time, and that's all you can do.

Diane: Yeah.

Kimberly: So the goal of the book was to share what we went through personally, what worked for us, what didn't, particularly myself, mistakes I made that I wish. Someone had told me at the beginning, Hey, maybe try this instead of this.

'cause I think it would've saved mom and i a and my dad. Just a whole lot of angst over it.

Diane: Yeah.

Kimberly: The whole situation. But yeah.

Diane: you write openly about anticipatory grief, and I know many caregivers have no idea what that even means. So can you explain what it looked like for you and why caregivers need permission to talk about it?

Kimberly: Absolutely. So anticipatory grief, I feel like. I feel like there's too many people that think, anticipate, or that grief in general is something that takes place after a loss, and that's just generally how it's portrayed. However, I think it can also apply to loss of relationships, loss of a job, loss of losing your loved one to a memory disease in stages because you lose, in my experience, I lose my mom a little bit more every day.

There's something she can do. this week, that next week she won't be able to do.

Diane: Yes. Yes.

Kimberly: And so you are losing that as well. As there comes a point where my mom's in the late stages, she's bedridden, she can't converse.

She, mumbles a little bit, but nothing that's, you can make sense out of.

She needs help, being fed. She can't do that. Like it's a full-time job to care for her. And it feels Each of those stages that she's, where she's unable to do something. It's like a new loss, a fresh loss. And so you're dealing with those tiny stages as well as the empty chair at the table at Christmas gatherings because for, and it's different for everybody.

For my mom checking her out of the facility. Causes far more angst and frustration at this point. That's not something we would do anyway. But in the earlier stages, it was just not, it was not helpful to her. It would've been nice to have her at the table to join the family, but she didn't know us. She wouldn't have been comfortable.

And changing that environment, as can be a trigger for a lot of people who are living with dementia because it's a very different atmosphere. So I think anticipatory grief can look different for everybody. For myself, when mom was diagnosed, I had two teenagers at home. Now I have one in college and the other's about to head that direction.

It was. It was seeing it through my eyes and seeing it through their eyes. when you go to buy a prom dress and that's something grandma might have come and done and we'd had lunch together and made a day out of it.

Diane: Yeah,

Kimberly: there's a palpable, just an absence there that's palpable. it's a little bit heartbreaking.

So with every joyous occasion, there's a little bit of sadness because she's not there.

Diane: Yeah,

Kimberly: and I think, and anticipatory grief is very normal. I don't think it's something we should

Diane: absolutely

Kimberly: is right. I don't think it's something we should feel shameful about. I think it looks different for everybody, but however you process it, I think it's important to process it.

And for me, that looks like talking to somebody, whether it's a close friend or a family member or a licensed therapist, any of those things to just download the thoughts that you're processing and it helps. Us make sense of it so that we don't, I think as caregivers we often compartmentalize because we're just trying to make it to the end of the day, right?

Diane: yes.

Kimberly: So being able to take a little bit of time for yourself to process that, I think opens us up to be able to do our jobs better and just live our lives a little bit better.

Diane: I think one of the universal, Ways of, that people with an, with somebody with dementia have ongoing anticipatory grief is the moment when you see their eyes light up and they know who you are.

They recognize you, and it's like, it gives you a sense of, oh, they're back. How long are you going to stay? Yes. And then the very next moment. their eyes go blank and they're no longer that person that we knew in the past. And that's where you grieve every single time. the little a loss.

And that's truly yes. Anticipatory grief and people don't realize it. And,

I love, that you, give people the permission to talk about it and tell them about your experience because people don't know, many feel guilty because they're tired and they're worn out and they're sad and they don't know why, but it is right.

They're grieving their relationship. They're grieving maybe the changes in their own family dynamics. It just, yes. It just depends. Yes,

Kimberly: exactly. And it's also, when you go see them sometimes it's the, I saw mom yesterday and was with her, and when I walked in. I got a smile for about one second.

Diane: Yeah.

Kimberly: And I knew it wouldn't be there long, and it's probably been about nine months since I've seen Lauren.

Diane: Yeah.

Kimberly: So that moment was gold and I loved it. There was a little sadness when, the smile left. But I think also it was important, particularly when our loved ones get to the later stages of dementia, it's learning that.

And really all the way through. I think it applies when you're having a challeng or an obstacle that, that they're facing because of the dementia, you either can choose to work through it.

Or you can you just accept that, okay, my person is not, this is not my person. I'm not sure what's happening here.

But this is not typical for them. Right. So at that point, you have to just kind of. Okay. This is not them making this choice or this decision. This is the disease that they're living with. And for me, separating those two things has been instrumental in being able to move forward.

Diane: Yeah, yeah. you mentioned something before about not having mom at the holiday table, birthday table or whatever, but I want you to know a lot of facilities.

Depending on the facility, we'll let you bring food in and

Kimberly: yes,

Diane: and ha have a family event. I, you have to be aware of what stage are they in and how much activity can they handle, how much stimulation, and it may be a very somber event in one way, because they can't handle. All the, interaction, and another time it can be really fun for them where they're,

Kimberly: yes,

Diane: hey, cake always wins when,

Kimberly: There's never a bad time for cake

Diane: and people eat better. I don't know if your mom still eating or not, but people eat better when they're around other people.

Kimberly: Yes.

Diane: And sitting down. I encourage families, Take a meal in, and absolutely. And make an event of it. Even if it's just you and your mom.

it just, It just makes it special. And for you, Yes. Even if it's not for her, it's for you because you feel like you have a need to. It may be, you may connect at that moment and that

Kimberly: might

Diane: be beautiful.

Kimberly: and I have to say we're very blessed. 'cause the memory care facility that she is in, they do big, celebrations for Thanksgiving and Christmas And a lot of the holidays. So they do encourage families to come in, which is something we always partake in.

Diane: Yeah.

Kimberly: it's a really neat way to connect with them. But like you said, there are good days for that and there are bad days, but it's never. I don't believe it's ever a choice our loved one makes.

I think it's what the disease is exactly how it's operating in that day.

Diane: That's one of the things, a lot of caregivers, don't understand. they're upset because they think their parent has actually chosen to act out or chosen to be, Aggressive or aggravated.

and it's not their choice at all. They cannot control it, and that's really a tough one.

Kimberly: It is. I think that's one of the most valuable things to just try to put ourselves in their shoes. The times where the most frustrated. I found that to be a valuable tool because, my mom would tell me she saw something.

And I would be like, it's not there. Look, it's not there. And I wasted so much time and energy.

Diane: Oh God.

Kimberly: Yeah. Trying to prove logic, which was not helpful to her at all. No. She just got more irritated and agitated and understandably Because her brain is projecting that image.

Diane: Yeah.

Kimberly: So she is seeing it and I'm telling her I don't, so if I were in her shoes, I, that would just make me feel very unsafe, very frustrated, very.

Just suspicious of things, I think. 'cause I know what I'm seeing, right? Yeah. I can't help that this person does things.

Diane: I think, she's dumb or she's just ignore, she's just not gonna tell me the truth. yep. Yeah. From my perspective as an old lady, what's wrong with her? Why can't she get it? She needs to get her eyes fixed.

now you talk about respite care and memory care decisions, and they often. Come with such terrible guilt. How did you navigate those decisions, for your mom?

Kimberly: So for respite care, actually, that was that decision was made a little bit for us. There was a day where my mom and dad had gone out to lunch and they actually had a really nice lunch.

They had a great time together, got back home. They've been married for over 50 years and. He opened the door to go inside the house. She was inside the house, first, slammed the door and locked him out. And then at one point ran out of the house to the neighbors to call the police. 'cause she did not recognize him.

Didn't under, she knew him in the car, but all of a sudden didn't, it can change on a dime.

Diane: Yes, it can.

Kimberly: and so the EMS showed first and he made a specific point. Maybe his delivery wasn't the best, but he was. It was still helpful information. It was just that, they can only make so many calls before they have to choose.

To place them somewhere themselves if it becomes a repeated thing, because I think for many it can be. So that was like a wake up call. And then the police that showed really nice gentleman worked with us and talked to us and he said, my grandmother went through something like this.

We ended up doing home care. It's something that you probably need to think about as luck would have it. Like literally the week before I had started just doing a real quick and dirty research of some places around town that might work if we get to that point.

So we called somebody, they came out and did an assessment, and then we had somebody there just enough the day where my dad could get a little bit of a break.

Because that person that's there, it wasn't necessarily that they needed help doing things. At that point, it was a buffer. So when she didn't know dad or became scared or paranoid, she had another person she could talk to. Yeah. So that decision was made for us for a while, and that actually. Float over into admitting her to memory care.

I knew my dad's health was suffering. He, she was up all hours of the night and would wake him up. She was convinced there were other people living in the house.

Diane: Yeah.

Kimberly: She struggled a lot and it was hard on him. And at the time he was also being treated for prostate cancer, so Oh, he was dealing with that as well.

Yeah, it was a lot. and then the caregiver one day sat down with dad and said, I, I think. It might be time. And that was when we started having those conversations. And the caregiver became a dear friend. She took wonderful care of mom, befriended her, and was also really good to the rest of the family.

So having that. Vote of confidence

Diane: Yes.

Kimberly: Called us. I think we already knew it. And that was just encouragement of, okay, it's time. And then when we made the decision later, I guess I only live about five minutes away from my parents, but. It had gotten a lot harder than Dad was letting on. I saw them every day, sometimes multiple times a day.

But in the nights where it can be the hardest because of sundowning and a whole bunch of other things,

Diane: yeah,

Kimberly: it just became really difficult and was severely impacting his health. And it was just, it was time. She needed more care than what we physically could provide.

Diane: Yeah.

Kimberly: She would become very anxious and needed, medication for some of that.

And when a doctor. When you go see the neurologist at an appointment, they can prescribe something, but they don't see how that impacts them or how it might need to be adjusted. The medication. And when you're in a. Place of care, like the memory care facility. That's something we chose one that had a psychologist there so that they could look at things and monitor and see this is working.

This isn't what, if we shift this dosage to this much? It was, it just became a no brainer for us because it was time and I know that not everybody is fortunate enough to be able to do that, and my heart goes out to 'em because I'm not sure. I'm not sure how we would've handled that, but it's well.

Diane: I encourage, I, people don't want to sedate their loved one. I get that. I absolutely do. But there are times in a disease process, especially with different types of dementia where aggression and, sexually inappropriate behavior occurs and the aggression and when you start feeling fearing for your life.

F or fearing that you're, they're gonna hurt themselves or hurt others, you have to take a step back. And as hard as it is, you may have to sedate somebody for a period of time. And with Lew body, the very drugs that you give to sedate them can have a paradoxical or opposite effects. Yes. And then it agitates them and then you go, Ugh.

Damn.

Kimberly: Exactly. It's such a mess. Yes, it's, and so I went and I toured several facilities because dad was always busy with mom. So I tried to visit most of them and narrow it down and then say, these are my favorites. Why don't you go visit these and see what you think?

Diane: Yeah.

Kimberly: And I would try to show up. In most cases, if I could, unannounced, I wanted to see what was going on in the home and who was being taken care of and how they responded to residents as well as family members.

And then, specifically, I remember having a conversation with the executive director of one place, and she just made it sound like, if they just get too aggressive, we'll just Care how she put it, but basically she was insinuating, we'll just sedate him. And I said, but what are you trying, like before you do that?

Because I,

Diane: yeah.

Kimberly: Dementia's hard, like they can't help it. I don't want her drugged for something that she can't help if it's not a problem. You understand? That was one of my primary concerns when I was looking at homes, and I was very pleased to find several that said, this is not, we understand this.

We work with people that have memory loss or dementia or different things where it does affect their personality and to sedate them is not the first line of action. These are the things we go through first, and if and only if we cross this line, then we may have to talk about that.

Diane: They call it chemical restraint in the facilities.

But I will tell you, just as a facility will saying they don't want to sedate if your loved one starts having terrible behaviors. Sure they're gonna pick them out just no yes and not give you a second thought and that those are the hardest. Types of patients to place. and with Lewy body, it's always a challenge because you just don't know what you're going to get.

And,it's hard. But I will tell the, my listeners out there, you have resources, out there. You've got Kim's book. I'm here with lots of information, ask. Let us help you. Teach you to advocate for your family member. Yes. 'cause that's the most important thing.

Kimberly: Absolutely.

Diane: Kim, your writing became your way of processing this journey.

How did putting words to paper help you survive some of the darkest moments?

Kimberly: when I started writing it was. It was almost just putting thoughts down to paper. There wasn't a ton of organization to it. It was just for me to process. I'm an external processor, so was doing that and throughout the journey there were a couple other friends locally that were experiencing.

I had, I think, two that Lewy body became a part of their journey with their parents, and then others had different kinds of dementia or other things, and there's more people. Struggling than you think and because there's so much, I don't even know, there's so much shame as caregivers to talk about it, but you're just afraid that nobody will understand.

What and hear at home and how that will come off during a conversation. Yeah. So to be able to talk to somebody who shares those same experiences throughout their day made it easier. And I found, I was getting through the grapevine. People would call and say, Hey, can we do lunch? I got your name from so and I just, I need to hear a little bit more about show timing or what did you pack for your mom to take to memory care or, different aspects of the journey. I just thought with the limited information that's heart-based, caregiving based, boots on the ground based, I just felt like there was a need for that so that people would say, oh my goodness, my loved one does this too.

And this is exactly how I felt. I am not alone. This is not just me. And there's a whole community out there, and I do think. Community is a tricky thing. I was involved in a caregiving group, which was a great group, but had a couple individuals that. We're just mad at the situation. And I get that because I'm pretty sure I was there at some point as well.

I think it's a journey. You move through stages, but it became so consuming for them.

Diane: Yes.

Kimberly: That it did not any longer serve me as a place to get positive feedback and okay, yes this is happening, but how are we gonna move through it forward in a positive way? And so.

Diane: A good attitude to have. And I can tell you, I tell my caregivers all the time, change your perspective.

You change your life and you were willing to change your perspective. And those that are stuck in that, I hate this, I don't wanna do this, they're reluctant caregivers and they're also people that need lots of help, but they don't ask for it as well. And they're embarrassed or they feel like a failure, so they put all this pressure on 'em.

I'm glad you brought that up because I think it's important to know that, you have to surround yourself with, or get rid of the toxic people in your life.

Kimberly: Yes.

Diane: Yeah.

Kimberly: Yeah, definitely. Because it, it impacts your journey. Yes. And if you're on a, at the time of the, caregiving group, it was during COVID, so it was virtual.

I would just hang up and I would just feel, I don't even know the word. Just almost, devastated. Just yes, no, no hope. And I thought I didn't start the call this way, so maybe this is not an outlet for me at this time.

Diane: Exactly.

Kimberly: And I really don't have much judgment towards the individual that was struggling, because I know I've been in their shoes at some point myself.

I think you all are. That's just you. When you first are finding out about all this, it's. There is anger, there's why did this happen? and take my loved one away from me as I know them to be.

Diane: Yeah.

Kimberly: But it's just learning to work through it. And that person just wasn't there yet. But for me, I had to draw that line in the sand and say, okay, but this, I wish her well on her journey, but I can't do that.

Diane: Sadly, some caregivers never get beyond that. And I've seen it for decades, and I feel my heart goes out to those caregivers because they're killing themselves too.

Kimberly: Yes.

Diane: With all that anger and rage and it's not good for them.

Kimberly: Yes. And that's on top of the daily

Diane: already Yes.

Kimberly: Activities that you're doing that's already just completely consuming.

Diane: and when caregiving is consuming like that. And it is for all of us. There are many people that, feel a sense of relief after their person dies. Yes, and I want my listeners to know that is not uncommon, and that doesn't mean you're a bad person. It's just you have given so much of yourself for so long.

You've neglected your health, you've neglected your outside relationships and hobbies or anything. You've haven't had fun. Your whole life is 24 7 on one person for Years sometimes. yes, it would be a relief because. You're just a mere shell of the person you were before.

Kimberly: Yes. And

Diane: because, and you need to rebuild that up.

Kimberly: Yes. And I think it's relief. And I also think. At least for me anyway, there's been a new search for identity because my mom's journey is a little over six years now, and she's still doing, her vitals are good, but she's bedridden and she doesn't see really, or hear or not aware of her world in real time at all.

Diane: Yeah. Yeah.

Kimberly: so it's, yeah, it's very difficult, but it's

Diane: challenge.

Kimberly: Yeah.

Diane: Now your book reminds caregivers that their loved one doesn't, for, didn't forget them. Lewy body dementia took those memories away. Why is that distinction so important?

Kimberly: I think it helps you separate. It helps you make sense of your circumstances.

If you start to associate my loved one. Doesn't remember me anymore? Why doesn't she remember who I am? I'm her daughter of 40 years. And there I think it builds resentment. if you don't take a step back from the situation and look at it as in, I know my mom loves me. She would hate what this is doing to her and me, but she cannot help it quite literally.

Yeah. The brain is an extremely, it's wild to just. Try to comprehend what all the brain, I mean, it runs everything in the body, but the things, the way it controls our thoughts, the way it could project images, it's just quite an amazing organ. So yes, it's, yeah. I think it's just trying to realize that the disease is something that has become a part of your loved one's life.

Your loved one is not the disease.

Diane: Thank you. That's well said. Very well said. Now, for a caregiver listening right now who feels exhausted, heartbroken, and alone, what would you most want them to hear today?

Kimberly: Oh, a couple of things. I would say that you're not alone. It may seem like it because there's voices that are trying to, get their message out in the world.

It's becoming less taboo. You hear voices like Emma Hemming, Willis, Bruce Willis's wife, Susan Schneider Williams, Robin Williams's wife. you're hearing voices that are advocating and they're bringing the things that we're experiencing out from the shadows and into the light. And it makes it more acceptable to talk about, and it lets us know that there's a community out there that understands what we're going through firsthand.

Diane: Yeah.

Kimberly: The other thing I would. Encourages to find somebody to talk to, either a family member, a licensed therapist, a friend, even if none of those are possible. You have a journal and write. Just write and write because still getting it out of your head and onto the paper helps you process it. And I think just finding, lastly, just finding something that helps you get through.

For me, it was my faith. I don't know what I would've done without it, and with my faith came an additional community that was helpful to me. So I think those three things, those are the areas that I would focus on because you're not alone and. You're doing hard and holy work. You are amazing. If nobody's told you today, you are amazing and your loved one is so grateful for all that you're doing.

Diane: absolutely. Kim, how do people find you and find your book?

Kimberly: So my book is titled, A Guide for Lewy Body Dementia Caregivers Caring with Compassion. It's available on Amazon and you can also find me@kimberlypellicore.com.

Diane: Great. I will have those on our website. I create a website with all this information on and links to your book and stuff,

Kimberly: okay, great.

Thank you. That's

Diane: great. To my family caregivers out there, you are the most important part of the caregiving equation without you at all falls apart. So please learn to be gentle with yourself. Practice self-care every day because you are worth it.