A Daughter’s Dementia Caregiving Journey with Karmon Hill

[00:00:03] Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies & Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30 plus years of experience as she guides you on a new path

[00:00:28] to a better relationship with those you care for. Here's Lisa. Hello, everybody. Welcome to another new episode of the Truth, Lies, and Alzheimer's show. I'm Lisa Skinner, your host. I'm excited today because I have a very special guest here with me today. Her name is Karmon Hill.

[00:00:55] And I invited her onto the show to share her caregiving experience with us. She took care of her mother, who has Alzheimer's disease. We never quantified. We know dementia. We know the umbrella, but we never got down to... They said Lewy Body, but we're not entirely certain. Okay. So she actually does not have a conclusive diagnosis,

[00:01:24] but it's one of the brain diseases that causes dementia. So she's here to tell us all about that. And I can't wait. But let me tell you a little bit about her first. She actually is an engineer. And then she was kind of thrust into this role of being a partner in care for her mother living with dementia.

[00:01:50] And she's also a wife and a mom. She authored a book that she's going to tell us about. And she considers herself to be a consummate creative with a heart to serve. I can believe that of her. She's a speaker, a dementia care advocate and serves as a leader in multiple ministries at her church.

[00:02:16] So she is now writing a second book to share about her personal caregiving journey with dementia in hopes it will spark conversations between loved ones about the importance.

[00:02:33] And I agree completely with this of having medical, legal and financial affairs in order while your loved one is still of sound mind. Yes. So her first book is called Whisper of the Wings. I love the title. And it is 12 Lessons Revealed by the Butterfly Life Cycle. I can't wait to hear about that.

[00:03:01] And she wrote it to honor God's presence in nature and in our own lives. So help me give a very warm welcome to Carmen Hill. Welcome to the Truth, Lies and Alzheimer's show. Carmen, it's such a pleasure to have you here today. Thank you. I am honored to be here. So thank you for having me. So why don't we start our conversation with an obvious question.

[00:03:30] What was it about your experience with your mom that inspired you to write a book? Not just one book, you're in the process of writing a second book about your caregiving journey and your mom's journey with dementia. Well, the first book honestly was more of a, I guess, paying homage to my mom from the standpoint of she kept saying, you should write a book.

[00:04:00] You should write a book. You should really write. And I was always like that. But it wasn't until I had butterflies in my garden. So the first book is about our journey and how it parallels the butterfly life cycle. And so there's I parallel those two just from like the little whispers that I got in my ear as I was out in my butterfly garden. And that always kind of reminds me of my mom when I get to spend time out in my garden.

[00:04:28] And so the book was sort of that. Yeah, mom, I hear you. You said I should write a book. Here's the book. So that's why I wrote the first one. The second one is like you said, it's in progress. And that was more to not just tell about my journey, but my mom was an educator, a consummate educator. And so I grew up with the gene of teaching pretty much. And I've also been a teacher.

[00:04:55] And so I always believe that whatever knowledge you know, you should share with others. And so that's where the second book is coming from. It's trying to beat the point before someone is in crisis mode and get them set up before that point. So if there is a crisis mode, they've already kind of set up their structure and they've had the conversations.

[00:05:18] It's a starting point and a lead in point for families that may have trouble figuring out how to talk to their loved one. Okay, well, before we do a deeper dive into that dilemma, which is a very, very important topic to raise awareness about and share our experiences with other people who like you are still currently going through this. Oh, yeah. There's no playbook that accompanies these diseases.

[00:05:47] So other people's experience is very helpful and very valuable to other people. But before we do that, I'm curious. Sure. Tell us a little bit more about the parallels that you noticed in the life of a life cycle of a butterfly. And what you have seen your mom go through during her journey. Oh, well, that's interesting.

[00:06:16] So, again, my first book is not specifically tied to dementia or Alzheimer's or anything, but there are aspects that I mentioned in the book about her. And one of the things that I talk about in the book is the fact that we can lay these perfect plans.

[00:06:35] But sometimes the greatest gift that we can actually give even throughout these plans that we lay is helping others and working with others. And what I see when I saw the butterflies in the garden is not necessarily if they were helping each other, but they had this community. And that's another important piece that I talk about in the book, the fact that we should be in community.

[00:07:04] That's something that everybody who is going through Alzheimer's, whether it's the person who's going through it, especially the person that's going through it, but definitely the people who are supporting, like the caregivers. It's so important that we have that community. And so that's one of the one of the lessons, this 12 lessons that I talk about. And one of the lessons, again, is that we should be a community. And I relate how at night the caterpillars cluster together and I don't know if they cluster because to keep warm.

[00:07:34] But part of it is suggested because it's predators. It keeps predators away from them. And so that clustering that I was seeing was the community that I noticed that they would take place in each night. And I related it again to the community that we as caregivers really, really do need to have a community. I really love that parallel because it's so true.

[00:07:58] I don't I have paralleled the dementia journey with another story that I recognize a lot of similarities. But the thought of the life cycle of a butterfly, I don't think ever would have entered my mind. So that's really creative and profound. I love it. So stage is your mom in currently?

[00:08:25] She said definitely stage seven. We bounce between where in stage seven, but she's late stage is my at this point. Late stage. Okay. Yeah, she's okay. Yeah. If that's what we're going to generalize. Then yes, late stage definitely. She is no longer verbal although every now and then she has a few words. Like yesterday when I came over, she had a few words. She walks a little bit, not a whole lot.

[00:08:55] But so she's mostly kind of wheelchair moved around at this point. Totally dependent upon someone to take care of her, which would be feed her, which would be toilet, toileting needs getting dressed. So yeah, but she still has that spark of who she was in there.

[00:09:21] Like yesterday I was sitting and smiling and sometimes I get a smile right back from her and it's heartwarming. So that's where we are. We're definitely late stage. Okay. So you have been really a witness to the progression of her disease for a very long time now. And she's in her late stage.

[00:09:43] So from the time you received a diagnosis and that was probably, you know, well into her already displaying pretty obvious symptoms of some form of dementia. What have been the biggest challenges for you personally, for your family, for your mom?

[00:10:08] Because these are the things that I know my audience truly values to hear what other people's experiences have been in case the same situation comes up for them. And how you handled it and what you've learned from it.

[00:10:24] So you can possibly, you know, help somebody else avoid the missteps that we all fall into to maybe help ease their journey a little bit from what it might end up having to be. Okay. The initial challenge that we had, unfortunately, was that my mom did not listen to us.

[00:10:53] Like we kept trying to explain to her mom, there's something going on. And I imagine it's like most people who do have it. She was highly resistant. So that made our job pretty tough. And I use our a lot because I have a twin sister. So I'm one of the fortunate ones who does in fact have a sibling who is active and helping.

[00:11:16] But we could not get her to do the things that we knew we needed to do up front. The good thing is she had already taken care of a lot of that because she's a very organized person. So we had the power of attorney. We had her trust in place. We had a bunch of things that she had already taken care of.

[00:11:39] But it was just the recognition and the fact that we could not talk to her and get her to understand we're seeing some things and we need you to help us help you. So that was the first piece. How would she respond to you bringing that up? Denial? Would she get angry?

[00:12:01] Because you know about 50% of people who live with Alzheimer's or one of the other brain diseases that cause dementia are very aware of the cognitive change that's happening in their brains. Some will be honest and admit to it. Others will go into denial. But the other 50% isn't even aware that they are going through cognitive changes. So where would you put your mom on that scale?

[00:12:30] I would put her as knowing there was something wrong, but being in denial about what it was because I could when I when I so there was a point where I came for three months and I couldn't leave because I was like I can't leave her like this. When I figured out you know that we were bills were getting missed and all kinds of things.

[00:12:50] But I noticed from when I was going through things like I would see notebooks with a whole bunch of writing in it like she was trying to remembering and keep things together. So I was doing all that on her own. She was living by herself at this. Yes. Yes. Yes. Yes. My dad passed many years prior. Yeah. Okay. So when you went to visit her and stayed the three months, it was blatantly obvious to you that. Oh, yes. There was something wrong with the picture. Huh? Okay. Yeah.

[00:13:21] Can you give us a few other examples of things you noted? Yeah. Well, you had asked about the challenges that I went through. So one of the challenges was the recognition getting her to be honest and let us help her. The second challenge I would say was once we moved my mom, we did wind up moving my mom across the country to Colorado first, which was where my sister lived and my aunt stayed with her.

[00:13:49] There was a house that came available across the street to rent. So my aunt came and one of the challenges was just like my mom was very much not like herself. She was well, she's headstrong, you know, she's a strong woman, but it was like almost mean spirited.

[00:14:09] So one challenge was to have your sweet mom who was always very much controlled, poised in control, turn into this person who was very conspiratorial, very mean spirited. It was tough.

[00:14:32] And then of course you're getting the backlash and the conversation that comes with someone who's not in control of their words and their actions. So it was for me, that was the biggest challenge. Having my mom be so horribly mean, especially to me, you know, because I was there trying to take care of her and I'm like, I'm here for you, but you're not treating me like I'm here for you.

[00:15:00] So, you know, you hear a lot of people say it's the disease and while you know, well, it's the disease. It's very hard to reconcile it coming from someone who loves you that, you know, loves you and that you love. I completely understand that. Yeah. And one of the things that happens to people as they are progressing through dementia is they lose those filters where they could control their anger and things like that.

[00:15:30] They're, they're really reacting to their entire world at some point on raw emotion. And it doesn't sound like you were expecting that or aware of it. And it's painful. It's hurtful. This is your mom. Exactly. Exactly. Yeah, that was, I don't know if it wasn't that I, no, I don't think I was aware of it. Um, yeah, I don't think I was not, not until we were in it. Did I, it was hard to reconcile that. That was the toughest for me.

[00:16:00] Okay. What, what else was difficult? It kind of sounds to me like, because you lived in a completely different state. Um, so you probably spoke to her regularly on the phone. Yes. But it wasn't until you actually went to visit her that you realized how, um, severe she had progressed in her dementia because it, you know, they cover up really well.

[00:16:30] They really do. Um, so when you were actually there with her on a day to day basis, it became pretty blatantly obvious that, uh, she was unwell. Um, it is 2018 April. I knew from one conversation because we talked every day or, or pretty close to every day. And we had had a pretty, pretty big discussion. Um, and then I came back a week and I was like, okay, this is the resolution from that.

[00:17:00] And she was, what are you talking about? I mean, I'll help, but I didn't agree to that. And as soon as she said that, I said to my sister, there's something wrong. So from 2018, one conversation I knew by 2019, it was becoming obvious to everybody else. So I wouldn't say that I didn't know. It may have been tougher for other people to know, but I knew, um, cause we went to a wedding in 2019 and then her siblings could tell that, that there was stuff going on.

[00:17:29] Um, and like you said, by 2020, when I got there, I would listen to her on the phone, talk to other people and she sounded so lucid. So it was like, she was the world's biggest actress on the phone and she could hold those conversations and she would hold them just long enough. And then say, okay, well, I've got to go just long enough to be able to keep it up. And then once she shut that phone down, the whole world fell apart again, um, was, was kind of what it was, was looking like.

[00:17:59] So, uh, that was sort of my story. Uh, one other big challenge was when we moved her to memory care and I really had to be up there and present, uh, as anybody will tell you, I won't say that memory care was a bad idea. I think it was a great idea for me to have the ability to put her there and to be able to visit and check on her.

[00:18:20] But I really had some things that I had to work with them on as they switched, um, executive directors. So, so those were some of them. Give us some examples of that experience. Cause I think that's a really important thing for, um, for the audience to understand some of the things that they could be up against and how you handled it. Yeah. Yeah. Yeah. Yeah.

[00:18:47] I always hesitate a little bit when I talk about this, because what I don't want to do is to deter someone from using memory care as a facility, uh, to be able to support their loved one. Uh, they're all so different. So I think the important, um, the important information here is what to be aware of and what to look for because they all nowadays claim to be person centered and all this stuff.

[00:19:17] And that means something completely different to each. Yeah. Yeah. So yeah, that's kind of where I wanted to focus on and understand that question because, um, they're not all created equal. No, no. And mine was, was it started out a pretty good one, uh, and, and switched over time. Like I said, but what I looked for good, let's start with what I looked for good when I first would go. And then we'll talk about what I was seeing over time.

[00:19:45] What I looked for when I first went was, was it clean? Did it smell clean? Uh, I looked for, did the executive director know the people there and were the people doing something or were they just sitting around doing nothing? Was there an activities director leading the people? Uh, did, did they seem to have control over people? Like was Jim in Mary's room and was Bob wearing no pants?

[00:20:11] You know, like what is the lay of the land when you get there and you catch them off guard? Um, the people, how long have the people been there that work there is particularly the ones that are workers?

[00:20:27] Are they just getting like, are they dealing with agencies where they're getting their people from different agencies and those people it's more transactional where they come in to help, but they don't really know the residents like that for me wound up being a reason why I pulled her in the end. And because they had lost so many people that the good turn out. Yes. The turnover, like that's a big question. The turnover and what does the nighttime routine look like? Like the night and day look different.

[00:20:55] And, um, like, is there a nurse on staff? Just those are some of the things that I looked for when I was the ratio, of course, you know, are they, um, state ratio or, or do they try to do a little better? So those were, were some of the things, uh, one last thing was, is there a separate price for rent versus level of care? And that's where they got us. They didn't start out like that. It's all in part. Yeah, exactly.

[00:21:23] We're going to go to a quick break. Sure. Um, just for a minute. And then when we come back, we'll pick up right where we're leaving off. Okay. Absolutely. All right. Don't go away, everybody. We are having a dynamic conversation with Carmen Hill, my special guest today. And we're going to go to a quick break, but we will be right back. Promise. This podcast is brought to you by Minding Dementia LLC. We encourage you to check out their website for resources, checklists, extra content, and more.

[00:21:51] Visit MindingDementia.com today. Welcome back, everybody. You are watching the truth lies or listening to the truth lies and Alzheimer's show. I'm Lisa Skinner, your host. And we're talking today with Carmen Hill, author of, um, uh, current book. And she's in the process of writing a second book. And we are talking about her journey with her mother, uh, who had been diagnosed with one

[00:22:20] of the brain diseases that causes dementia. We are, uh, before we went to break, we're talking about things that you should look for, the questions you should ask if you are considering placing your loved one in a memory care type facility. Yes. Uh, so let's pick up where we left off. Carmen, you were saying, um, the good things that you were assessing when you were trying

[00:22:46] to decide if this felt like the right place for your mom. And then I think you were going to segue into, um, the things that you kind of were a little hesitant about. Right. Right. So we put my mom, of course, in memory care. And I did talk about some of the good things that I liked about, or that I looked for in the place in this place, had all of those that we mentioned.

[00:23:14] What happened is over time that shifted a little bit. One thing I started to notice was they were losing the head nurse or their head, I guess, director of the nurses. And so the care was getting a little less standard. For example, they were supposed to bathe her on a regular basis, like maybe every other day, but you know, maybe twice a week.

[00:23:40] I can't remember the schedule, but I started noticing that there were no towels or no washcloths in her wash because I would wash her clothes and I would wash her clothes. Originally they said they would do it, but I did it as a way to one know where all her stuff was because oftentimes in memory care facilities, things will tend to get mixed up a bit. But then too, it allowed me to see what the landscape was like, was she getting bathed?

[00:24:08] Were there soiled clothes? Just like, were there wet clothes? You know, what was going on with her day to day, week to week? And I could tell from looking at her laundry. So that was another thing was, you know, what did she have laundry? Was it all she was wearing the same thing when I come back the next day? How did the, again, the turnover rate and how were the caregivers that were there? Were they kind?

[00:24:37] Did they go the extra mile? Did they seem familiar with her? Did they go the same way? And so these were some things that over time started to slip and had me. Questioning. And then the big thing for me, I think was one day they didn't feed her. And the only reason they wound up feeding her was because there was a lady who would always come. Her name was Julie and I love Julie. And her dad, George was up there.

[00:25:03] And Julie was always so kind to look in on the other residents because you really do wind up forming a community with the other people who are going through what you're going through. And Julie went looking and she said, where's your mom? I mean, well, I wasn't there, but she said to one of the ladies, where's, and I, you know, my mom's, I'll call her Althea. I prefer to keep her business personal, but so where's Althea? And that's her middle name.

[00:25:29] And they went, well, she might be in the other cafeteria. And so Julie went to the other cafeteria and said, where's Althea? And they said, oh, I think she's in the other cafeteria. Well, it winds up when they look through the window, my mom was sitting out in the section where the TV is, you know? And so no one had caught that and they would not have caught that had my friend Julie not caught that.

[00:25:56] So just being, you know, you have to be very on top of it, very diligent. You have to employ your community and we watch out for each other, you know? So those are some of the challenges that you run into. Of course, the cost is exorbitant. And so you want to know if there's a sliding cost, like, you know, they can say that the rent is one thing, but then they also can say the level of care is something different.

[00:26:24] And then you've got this huge balloon cost. So those are some of my experiences. These are all great things to take into consideration. You've got to be, and I know you're going to agree with me on that. You have to act as the advocate for your loved one. Absolutely. They are no longer capable of doing that. So somebody has to be their eyes and their ears and, you know, their champion. Otherwise, things don't always go as you hope they do.

[00:26:55] Unfortunately, we are just about out of time. But before we go, I'm going to ask you two last questions. Sure. What really profound piece of advice do you have for the audience based on your personal experience? Because you've been doing this. You've been on this journey for a while now. And then after that, let us know where we can find your book. Okay.

[00:27:23] So that profound experience for me, it's been find the joy even in this journey. It's tough. It's a tough journey. It's one filled with tears. It's filled with anger. It's filled with feeling lonely. But there are going to be some funny things that happen. For example, my mom pointing to the sign saying, I want to go there, that place, that place. And I look and it's McDonald's.

[00:27:53] Now, my mom, we never went to McDonald's growing up. I could probably count on one hand. We lived at the end of the block where there was a McDonald's and we never really went to McDonald's. So for my mom to all of a sudden, like you have to know my mom's personality. She's picture me, but a little more poised. That's my mom. And for her to be pointing to the McDonald's sign, that's where we wound up. So little funny things like that.

[00:28:23] Those are the things that I record. Those are the things that I share because I share on Instagram a lot about dementia and my journey that I've gone through with dementia. So find the joy in each day, even in the tough days. Find that moment of joy. Find that Thanksgiving. Find that if you're, you know, if you're a spiritual person, find that moment of gratitude

[00:28:46] where you thank, you know, your maker, your creator for allowing you to maneuver through that day and get to the end of it. So, so that's, that's kind of my profound piece and find your community, find your community. And where can we find your book? Well, you can find my book on in a lot of places. If you're in Austin, Texas, it is actually physically in the bookstore at book people, which I'm so proud of.

[00:29:14] That's like one of the largest, if not the largest indie store in Texas. So my book is there. You can also find it on Amazon. Actually have, I don't know if you can see it, but it's, um, whisper of the wings. So it's 12 lessons revealed by the butterfly life cycle. And again, Carmen Miller Hill, uh, is the book. So you can find it on Amazon. You can find it in Ingram spark. If you Google it, it's everywhere. So it's, it's easy to find.

[00:29:43] I think my biggest takeaway from this conversation that we've had today, I find, I found it incredibly inspiring, but it's, it's what I believe a hundred percent. And I've been doing this for 30 years. Plus I've had eight of my own family. One of the brain diseases that causes dementia.

[00:30:04] And I think you are the perfect example and testament to how we are very capable of providing a very meaningful and purposeful life to those that we love or those that we care for, who are going, who are living with Alzheimer's disease or related dementia. It's a different life, but it still can be a very joyful, purposeful, meaningful life. Do you agree with that?

[00:30:32] I 100% agree. Yes. Yes. Thank you for that. Yes. Okay. Thanks again for being here with us. It's been a joy and a pleasure to have you as, as my guest and best of luck to you with your new book and, um, you know, having that special relationship and carrying those memories

[00:30:59] forward, um, for the rest of your life of you and your mom in this journey. Thanks again for being here, Carmen and everybody. I will be back again next week as usual with another new episode of the truth lies and Alzheimer's show. I'm Lisa Skinner, your host and take great care of yourselves for now. And I'll see you next week. Bye-bye. Thanks. Thank you for listening to truth lies and Alzheimer's.

[00:31:28] We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa's Minding Dementia Support Group. We're a community of like-minded caregivers and we're here to help.