Episode Transcript
Hello, and welcome back to the next episode of Lewy Body and Mindful Caregiving. I'm Krystal Jakosky, the podcast person.
This week, I want to talk about, I wanna give you a little bit of an introduction to myself, and I wanna tell you about my Mom. And I want to tell you; I think I'm gonna tell you today about my journey to a diagnosis for my Mom so that you can understand where things stand and really follow the journey as much as possible. I am the middle of five children. I live in Colorado. I have a sister in Texas, a brother in southern Utah, and then a brother and sister in Northern Utah. So we're kind of spread out a little bit, and we were all born into the Mormon church. Most of us don't practice anymore, and I don't really know why that matters, but I just wanna share that with you, other than the fact that family is unbelievably important.
It [Family] is really one of the values that I still hold dearly from the Mormon church. While I've walked away from the church, there are some things that I just really can't get behind. And there are some things that I'm like, you know, that was okay. That was okay. And I think every religion kind of has that. I think every religion has the, ugh, I don't like that. And the, hmm, maybe… It's like a buffet of life. <laugh>.
Living in Colorado, I've lived here for 23 years. I moved here in 2000, and in 2015 I moved to Utah with my husband and my youngest son. We were there for two years. And while we were there, I spent every Sunday with my Mom. We would take her grocery shopping, and it was delightful to spend that little; it was like her special outing.
She was working at the time, and she knew that she got to spend this time with me and my husband, and we would go to Costco because it was Utah, and Costco would be way less busy on Sunday <laugh>. So, we spent a lot of time with her during the two years that we lived in Utah. And then we decided to move back to Colorado. My Mom was very upset that we were leaving, and she felt like she was being left behind. And so we told her that in moving here, we would make sure that we had a mother-in-law unit for her. So, we moved here in 2017, and she was still working at that time. And then in, I think it was August of 18, so it was about one year after we moved back to Colorado when my Mom moved here too. Her health was declining at that time. She had retired from her job, which meant that she was at home all the time. And she's very much one who, if she doesn't have to go out, she'd rather just hermit away in her house.
I would call her and talk to her, and she would often report, “oh yeah, I fell the other day.” I could tell that she was depressed and I could tell she wasn't doing well. I just had this gut feeling that she wasn't gonna be with us for very long if somebody wasn't watching over her much more closely. And since we had already told her we'll make sure that there is a home for you, we decided to bring her here and put her in a 55 and older active adult community. We thought this was a great space. It'll give her lots of other adults that can entertain. You know, they had a movie theater, and they had craft rooms and a pool and, libraries. It was a wonderful place with lots of opportunity for my Mom. And they had plenty of social gatherings so that my Mom could easily go and be social if she wanted to.
So she moved there in August of 18. And when she first moved there… <Thinking out loud> my Mom is only 70 right now. In, in, what is this? This is August 23. My Mom is 72. My Mom is only 72 years old. And so at the time, she was probably what, 68? 67. 68. So she, my Mom used to be super outgoing and I, I mean, super outgoing might be the wrong word, but she liked to find the fun in life. She, like, when it snowed, she was the first person to drive through the snow drifts and have a good time. She was mischievous with her other divorced friends. My Mom and dad have been divorced since I was eight years old. And my Mom did get remarried, and then she got divorced from him as well, which I'm good with. Um, and she's good with now, too.
She's always had a little bit of a, “life is hard attitude” and a bit down. And people will think of her as a very, when they meet her, they think she's a very sweet, kind, lovely lady. And she likes to bake for everyone. And the thing is that behind her baking is, “if you love my baking, then maybe you like me.” But then she has to, to keep baking for you to keep, like keeping you into being her friend, keep you liking her. 'cause she feels like that is where her value is. That is where her worth is. She bought into the Mormon belief that she would get married, have kids and be a housewife and a mother. And that was supposed to be her path, her journey in life. And that's not the way it happened. So she's single, divorced twice and now living in Colorado. When she first moved, I was very hopeful. I knew that I couldn't fix everything because of her history and because of her, um, I don't know how to put it, her mental outlook in life that everything is just a hardship. I knew that I couldn't have her living inside my own home. I knew that I needed my own space and that I could help provide a different space for her, which is why we got her into reduced income, 55 and older space. And it was a nice space. But when she moved there, I noticed she was falling a lot at night. And that was part of the reason we brought her over. 'cause she would tell me that she was falling, and I was concerned about her health declining. And I was concerned about closed head injuries, also known as concussions.
I was concerned about memory failing because she had fallen so many times. And so when she moved here, I started paying attention to this, and I started trying to understand “Why is it?” Because it was suspicious to me that she was only falling at night. She was stable during the day. She was able to move around and go to the hair salon in the community. She was able to go down to the movie theater if she wanted to. She had her own collection of movies, so she would just go down and watch a movie on the big screen.
So I did a bunch of sleuthing, and I recognized that one of the medications that she was on, she would wake up in the middle of the night, and she would feel like she needed to go to the bathroom. And she was worried that she was going to have an accident and she would get up and be disoriented and she would walk into a door jamb. And when she'd walk into the door jamb often, she would knock herself out. She would end up on the floor and at one time, she was trying to pick something up underneath the chair, and she fell over and broke her tailbone. There were little things happening that kind of made me go, “Something's not right, something's not right.”
She went and visited one of my siblings and on the way home in the airport, they didn't know. They dropped her off at the airport. They got her checked in, she checked her bag, and she just had to go to the gate. And on the way to the gate, somebody convinced her, like one of those kiosks, they convinced her to spend $2,000 on beauty products, promising her that they would make her look younger and help her with her age spots and that it could take 10 years off of the current look.
These little things kept adding up, and I thought “Something's not right.” So I got the one nighttime medication taken care of, but these judgments were still, still not quite where I thought they should be. Like, who does that? It's, “Oh, I'll take this one serum 'cause it's kind of pricey, and I'll see if that works. And if that does, then I'll do something else.” But $2,000? So then Covid hits. So she's been here for about a year and a half, and we had been building a mother-in-law unit. It's a hundred feet out my back door, it's right there. And we moved her in April, got her out of that community and into this house. This mother-in-law unit, it's 700 square feet, so it's kind of smallish, but it's big enough for her and it's got everything you would need. It's got a full kitchen, the living room, the bedroom, walk-in closet with a stacking washer dryer, and a bathroom. So she has everything that she needs. She is very much self-contained in that space.
So she moved there in April of 2020, and I would keep an eye on her. She would fall here and there, but things were mostly okay. And she seemed mostly with it as far as critical thinking and making decisions and whatnot. But then I noticed that she would end up in the hospital like every eight months. In the hospital one time it was a bowel obstruction, but she didn't really have an obstruction. And one time it was a kidney stone. She actually had a kidney stone <laugh>. Just different, “I'm in severe pain” kind of issues. She threw her back out in June of 2022. So just, yeah, 2022 she had a herniated disc. And in having a herniated disc, she's completely laid up. She's really struggling. And that became the beginning of her decline, meaning the obvious beginning of her decline. Because before that, she would ask me a question and I would give her an answer and she would do the exact opposite. There were still signs that something wasn't quite right, but they weren't big enough for me to say, “Hmm, what's going on?”
So in June, she has a herniated disc, she's struggling, she's not feeling so good. We do what we can, we get her into physical therapy, we do this wonderful thing with a chiropractor, stretched her body out. And then she started seeing what she would call these crawleys. She would look at the wall and everything on the wall looked like it was moving down the wall; nothing was stationary. I would look at the wall and everything looked fine to me, so not too worried. And that was in September.
So we went to an ear nose throat specialist, and that ear nose throat specialist said, “Oh, well she has some loose crystals in her ears, but that's it.”
And I said, “Well, would that do anything with the visual crawling?”
And he goes, “Well, no. I don't, I don't know.”
I mean, okay, so who do we go to next? So we go to the, the ophthalmologist and we have her eyes checked, and they said, no, her vision is absolutely great. And we did blood tests and we did an MRI. And the day that I took her to the MRI, she knew that she had an appointment down in Denver for the ear-nose throat specialist. And we got in the car, and we were driving. We were headed to Erie and my Mom says, “Where are you going?”
And I said, “I'm going to the MRI.”
And she said, “No, I have the ENT today.”
And I said, “No, we need the MRI before the ENT because they wanna look at that too and make sure everything's okay.”
“Oh, okay.”
So then we walked into the office. It was only seven minutes from that conversation to when we walked into the office for the MRI and my Mom walked right up to the receptionist and she said, “I'm here for the ENT specialist”
“Mom. We're here for the MRI.”
“We are?”
“Yeah. We're here for the MRI.”
“Oh, okay. I'm here for the MRI.”
Well, then the next day, we did the ENT. These became bigger and more, these little flashes of, that's not quite right. And all the time I am simply trying to figure out what these crawleys are. Okay, well, the ENT didn't have anything for us. The MRI didn't have anything for us. The ophthalmologist didn't have anything for us. The blood tests didn't have anything for us. And my gut said, “You're dealing with dementia.” And I was like, “No, I'm not. I don't wanna <laugh>. No, I'm not. That's bullshit. Sorry. Uh, I'm not.”
I don't know. Because in my brain, when she moved in here, over here, I believed that I would just, she would just go naturally. And one day, I would go out and I would find her peacefully passed away in her bed, and then I would call my siblings, and we would move on. Like it was this fairytale belief that everything would just be so simple. And the idea that I was dealing with something worse was like, my gut was so, so persistent, and my brain and my emotions were like, “Gosh, no, no, we don't want that.” So finally I said, “Mom, maybe we should look at testing.” I agonized over that decision with my gut saying, “Hey, you are dealing with dementia.” And my brain saying, “No, I'm not. No I'm not. No I'm not.”
Do you put your loved one through two days worth of testing to understand whether or not they have a terminal diagnosis, a terminal illness, or do you believe in ignorance? Will getting the diagnosis actually benefit them in any way, shape, or form? Or is it just gonna cause them more anxiety and more stress? Is it going to be more emotionally upsetting knowing that they're declining and there's not a damn thing they can do about it? And having a name like that for it, like, that's not cool, that's horrible. Am I asking for these tests for myself so that I can have a diagnosis so that I can know what I'm dealing with? And why would I do that? Why wouldn't I just operate as though it is dementia and ignore getting tested? Because I don't wanna put her through that stress and I don't want her to know that she's actually failing so horribly. And what if finding out that she is, she just gives up on life? What will my siblings think if I put my Mom through this? She finds out and then she just declines really rapidly. Is ignorance not better than letting that happen? Is it not more merciful to pretend like it doesn't exist and just smile through all of the missed words, the confusion in preparation of having a diagnosis, because my gut said, you are dealing with this.
I took a savvy caregiver class, I found it by going to the local senior center, and I just laid my heart out on the ground for the director. And I said, this is what's going on and this is what I'm afraid of and this is how I'm feeling, and I'm so overwhelmed and I'm just crying, sobbing in her office, trying not to be a bumbling idiot. And she told me about this class, Savvy Caregiving.
The teacher was amazing. I put together a group and we did it over Zoom instead of in person because I knew of a couple of other people that were dealing with aging parents and suspected dementia. So all of us, there were six of us on that, all six of us took this course. And I was able to ask them in that course, ask the teacher, say, “Hey, is it better to get a diagnosis or not to?” She was full on an advocate for getting a diagnosis. And she was so strong about it because she said, look, if you have a diagnosis, the medical system treats you differently. And that was what made me figure out, I need to get a diagnosis. It's okay to get a diagnosis, being able to talk to the doctors, being able to be my Mom's medical power of attorney and not have anybody question it because she has a diagnosis. It empowered me instead of shaming me. So I talked to my Mom and I said, Mom, let's do this testing and if it turns out that you've got something going on, then these people are gonna let us know. Like they're gonna let us know why the walls are crawling, why the carpets are moving. We've tried every other brain scan thing that we can do to try to know what's going on. So let's do this stuff and see what happens. And if there's no diagnosis, then great, you have a clean bill of health. And if there is, then we're gonna go through that together.
When I told my siblings I was an emotional wreck because I was like, guys, I don't know if you're okay with this. Are you okay with this? I was insecure, afraid of judgment, afraid of them not liking me because that Mormon upbringing and that deep family connection, I was terrified that I was gonna lose it because I was doing something wrong in taking care of our Mom and that they would deem me as, whatever you wanna call it, <laugh>. So I was crying and I was scared, and I told my siblings and they were like, whatever, you know, they weren't living it day to day, so they didn't know and they didn't understand it. But I'll tell you, I understood it.
Getting a diagnosis was the biggest, most stressful thing in the front end. And yet it provided so much relief because it meant that I wasn't going crazy. It meant that I was actually dealing with something very real. It meant that there was a name. And in having a name, I could do research and having a name, I could figure out what is going on, how it's going to move and progress. And that also meant that I could talk to other people, gain more knowledge and put into place some next steps for, well, if this happens, then this is what I'll do. And if that happens, then that's what I will do.
If you are in a place where you are struggling to decide, do I get a diagnosis or not, I highly encourage you, get a diagnosis. As you will find later, I will share with you times where having a diagnosis has been unbelievably beneficial, both in my conversations with my Mom and the research that I do and the doctors at the hospitals that I have to work with whenever she has to go in for a kidney stone or something else. I am telling you that a diagnosis is way more beneficial than it is hurtful. It opens your eyes and it really lets you know what you're dealing with. So if you haven't already, I encourage you to do it. And if you have, you have, and this is where you're at, my heart goes out to you, just like it goes out to me, you're not alone. There are a lot of people going through it, which means that you can have a support system and that you can know other people are fumbling through as best as they can too.
Thanks for listening today. I'll see you again in a couple of weeks and I hope you add self-care. What are you doing for you today, tomorrow, this minute, next week or next time? Take care.
