Episode Transcript
Speaker 1 00:00:10 Welcome back to Lewy Body and Mindful Caregiving. I'm Crystal Dukowski and thanks for coming back. I hope that you're doing okay and I'm wondering what self-care you decided to do in between this episode and the last episode. I gave myself a little break. I decided that I could breathe. I did a puzzle and I spent a little bit of time with a friend just listening to music, some music that they had written and recorded. It was delightful, relaxing, and I was very grateful for it. So that was my self-care. I hope that you can report on what your self-care was as well, because it is so important. Um, today I wanted to touch base just a little bit on my mom and the symptoms that she has so that you can know more of where I am at and where she's at and what I'm going through.
Speaker 1 00:01:05 I know that the symptoms with Lewy body, the symptoms with dementia are so vastly different from patient to patient, from person to person. And that's one of the things that makes this disease so unbelievably frustrating because there's no, this is actually absolutely how it's going to go. You cannot plan for, well, when mom becomes in continent or when mom stops remembering who I am or when mom can no longer read books because it's entirely possible that my mom will be able to continue doing those things or that your person or you may be able to continue doing those things long into the disease. So you're constantly learning, you're constantly shifting, you're constantly changing. My mom, when she first moved here, I mentioned that she was falling a lot and I discovered through a bunch of research that it was one of the medications that she was on, and we got her off that medication and she stopped falling. But by then she'd already had two closed head injuries, also known as concussions and a broken tailbone. And she'd been struggling in a, in less than a year. It had been a big deal.
Speaker 1 00:02:26 I had also noticed that she was shaking, but it was very minor, minimal, and I didn't worry about it too much. At the time, she was living in a 55 and older community, so there were a bunch of apartments and they had wonderful activities and possibilities, and my mom would go do those if somebody went with her or if somebody directly invited her, but of her own free volition will and choice, she really wouldn't, didn't really wanna leave her room. She would go to the grocery store, she might run out to Walmart or to go shopping really quick, but they were very short trips and I noticed that she was starting to, the, the range of area that she was willing to go at the time I thought it was just willing to go, was really shrinking. It was really pulling in. And whereas she used to be able to drive to Boulder for something, now she's like, uh, no, I'll just do something closer.
Speaker 1 00:03:27 Where she used to be able to drive up to Longmont, which are places that are like 10 minutes away. They're not very far up in Longmont. She lived with me up there for quite some time, so she knows the town, but she would forget which side of town the grocery store was on or Kohl's was on, or where was Walmart again, I know that it was up there somewhere. Target, I'm trying to find Target, and I just kind of got lost. So I came home. These were little things and they wouldn't happen that often, so I didn't worry about them too much 'cause I was like, well, you know, it's just mom and she hasn't been out in a long time, so maybe it's just that she's forgotten because she hasn't been driving that. But then Covid happened and we moved mom into a, we had just finished a 700 square foot little mother-in-law unit for her right here on my property.
Speaker 1 00:04:20 And it was when she moved in, I started noticing some of the other forgetful, or she would struggle to find a word here and there. Uh, I noticed that her shakiness was more pronounced as time continued on. It wasn't just the shakiness in her head because, or in her hands. It started with her hands and she would try to write her name and she really struggled with that. And then when she would try to do something on the computer, she would grab the mouse with her right hand, 'cause she's right-handed. And she would struggle so much that she would have to put her other hand, her left hand on top of her right hand to try to steady that hand so that she could maneuver the mouse to where she wanted to click. And she would often miss the click because she was shaking so much.
Speaker 1 00:05:09 And then the shakiness moved up to her head. So she would be sitting there and she would be shaking with her hands, and then she'd, I'd noticed just a passive shake in the head while she was watching tv. And one day I asked the doctor, it was early, and c o d you know, we go and we have our mask on. And I said, you know, should we worry about her shakiness? And the doctor said, no, that's probably just normal aging. The, it's a shake that just comes on normally. And so I wouldn't worry about that at all. I mean, you could go to a neurologist and get it checked out, but that's just probably a waste of money because I think this is normal aging. Okay, the doctor said so, so we didn't worry about it too much, but then a year later in June, she um, threw her back out.
Speaker 1 00:06:09 She had a herniated disc in her lower back. And this was rough because it meant that she was even more confined. We had off and on, she had had back pain and I had taken her into a friend of ours who was a physical therapist. And, um, mom trusted this physical therapist. So we would set an appointment, we would go in, she would do some stuff, she would, um, stretch it out, massage it out, give mom some exercises, and then we would go home. And I would remind mom every day, have you done your exercises? And she would say, yes. She was annoyed that I would ask her. And eventually I would ask and she'd say yes. And I said, well, which ones did you do? Well, I don't know, just the ones that she told me to do. I said, well, what movements did you do?
Speaker 1 00:07:01 And she couldn't remember, which told me that she wasn't actually doing her exercises. And I found other ways to ask her questions. And I found out that she liked to go to this doctor, but she didn't wanna do the work to improve her back at home. She just wanted a quick fix, which I've worked with a few older people and they kind of feel that way. They're like, can't somebody just fix it and make it better so that I don't have to do the work? And I recognized that in mom. And yet I also recognized that we could have a problem if she didn't start taking care of herself. And before you know it, she ends up with a herniated disc and she really can't move, which means that we had to adjust further and do even more physical therapy. And we got her into a chiropractor that has this machine that slowly stretches the back in that specific area and gets some blood flow. It, um, kind of pumps, I don't know how to explain it, but it brings blood flow in there and stretches it a little bit so that it can open up more space and help that space heal. And while we were doing this, while we were going, mom would be more forgetful.
Speaker 1 00:08:18 And two months into it, the crawl, the walls started crawling and she started shuffling a little bit. She would need to hold onto me wherever we went. And it wasn't like when she would feel like she was gonna fall, it wasn't a dizzy ness. It wasn't like her head was spinning and she felt like she was gonna fall over. It was literally, in my opinion, more of a muscle rigidity where she was struggling to pick up her feet and get her lower half to fully respond to what the brain was trying to tell her to do. So we have these crawleys, we have this stiffness. We have doctors saying, Hey, let's check out your vision and see if there's a problem there. Let's check out your hearing. And we're looking at, at trying everything to try to figure out what the hallucinations were hoping that they were something else. And she was confused. She was forgetful, she was unsteady. She couldn't stand for more than five minutes. She would get up off the couch and go into the kitchen and she really wanted to make cookies. But five minutes into making the cookies, she would really feel, um, kind of faint and unable to stand there like she was, like her knees were gonna give out on her. So she would go and sit down.
Speaker 1 00:09:43 Her mobility really started to suffer, and she really started to pull her world even more in confining. So she had gone from living on her own and the ability to drive and being out and meeting with people to keeping herself in her apartment and leaving as little as possible. And then she's in my house or in my, in her mother-in-law unit, and she still has the ability to drive. And she would maybe leave her house once a week, maybe to go to the grocery store or shopping like at Kohl's or Walmart, which are really just down the street. She was already pulling back. She was already self isolating. In addition to the inability to stand and the confusion and the memory problem. She was struggling to find words. She, the critical thinking to make really good decisions was just not there. She ended up spending like $10,000 in one year on computer games, like the farming games and whatnot.
Speaker 1 00:10:53 Just, yeah, I can spend 20 bucks on buying more coins. I can spend 20 bucks on buying more coins and $800 a month later. And she couldn't understand why she couldn't make ends meet. She couldn't understand why she was having to dig into her savings, like, what is going on? Why are things so difficult? She couldn't, she didn't know. And when I brought it up to her attention and said, well, mom, you did this and that, like, let's look at your finances. And she was insistent that they didn't add up to that. There was no way that the, the game had cost her that much, that she had chosen to buy that many, that it must be a mistake, but it wasn't a mistake. So at that point, I ended up taking over some of her finances. So instead of her having access to her savings, now she had access to her monthly that came in from social security and she had x in a regular savings account.
Speaker 1 00:11:54 And then anything that was retirement and I r a and those bigger savings accounts, she has to come to me and say, well, I've spent all my savings, so I need a little bit more. And that little, that little step has been a huge benefit for us because she doesn't wanna ask me to sell some stock or bring money from her, i r a down into her, into her bank account because like, well then Crystal's gonna judge me because I've spent all this money. So it's curbed that and it's been beneficial in many different ways. It also means that when larger medical bills come in, then I can take care of them on the side eventually trying to figure out what the Louis were trying to fill out, figure out what she calls the hallucinations, which is the walls and the pictures on the walls crawling down.
Speaker 1 00:12:54 Nothing stays stable, nothing stays still any patterns like on the carpet or on a chair. Um, everything, you know, is really difficult for her. And when we went in and did the testing, it took three days. We were very, I was very grateful for the gal that we had doing the neurological testing. She was a younger gal. And day one, she gave me a whole bunch of papers and said, I need you to fill these out. I need you to answer these questions. And what they were is all the different in areas of the brain I about orchestra. I have the oboes and the violas and the violins and the tubas and the, uh, percussion instruments and all of these different instruments. Well, all of these different questions that she had correlated to the different parts of the brain. And I needed to answer always, sometimes, usually all of that on all of these different things.
Speaker 1 00:13:49 So is your mom able to hold a conversation? Is your mom able to dress herself? Is she able to do, you know, personal hygiene and take a shower and that kind of thing? Is she able to cook for herself? All of these things in so many different areas? And so she got these answers from me, and then she also had my mom answers similar stuff. And then she had these hands-on cognitive tests that my mom needed to do. And the first day we answered the questionnaires and she just chatted with mom about how she was feeling, how she was doing, what she was concerned about. And the doctor and I had already emailed back and forth so that she knew my concerns. And that way I didn't have to verbalize the concerns in front of my mom because I had noticed at this time that when I was anxious or stressed, my mom's anxiety level and stress level also increased.
Speaker 1 00:14:47 It showed me that if I was calm and relaxed, that my mom took her cues from me. It also meant that if I went out to her house and I was like irritated with something, she would automatically assume I was irritated with her in this space and she would go into a shell. So if I came into her house and sat down and we just started chatting and I thought that I was doing a good job of staying even keel, my mom might notice that I'm not even keel. And she may say, you seem agitated. Are you okay? And in that moment, I would have to answer her, well, I am a little bit frustrated because this is going on so that she knows that it's not with her. She knows that something else is happening or I'm really tired, I'm not really sleeping right now, and because I'm not sleeping, everything seems a little more difficult.
Speaker 1 00:15:43 And she would say, oh, I understand how that can go. I really have had to learn how to watch and box my own emotion up so that if I am frustrated, I either don't go talk to her, which is not good because she is struggling through the actual effects of Lewy body and she needs me, or I have to put them in a little box while I'm talking to her and, and put 'em on a shelf so that I'm not adding to the insecurity and the anxiety and the upset that she is feeling now. Anxiety is a huge part of Lewy body. They naturally get anxious and they naturally get very suspicious of everybody around them. They don't trust people, they don't trust strangers, and they have a really difficult time with that. And not everybody gets that. My mom on occasion does. My mom is very picky about the people that she will let come in, whether or not they've passed muster as far as her own, um, judgment on who they are and what they're about.
Speaker 1 00:16:56 So we got the diagnosis of Lewy body and we, um, have been navigating through that. My sister came out and she was here in April and my mom was doing really good in April. She seemed really with it. We had just gotten her on some new meds for Lewy body that are supposed to help with the forgetfulness and the confusion and the crawling sensation, the hallucinations. And um, so we had just started on those and my mom, it was like we had gotten six months back. It was like we had turned the clock back and she was really with it. She was really doing well. And I was just blown away because, and we got her on those medications in February of 23.
Speaker 1 00:17:47 She was laughing, she was joking. It was delightful. At one point I said to her, she asked me what Lewy body was, and I explained to her that it's protein deposits in the brain. And she said, so I have too much protein. And I said, well, mom, I guess you could say that. And she said, well, then maybe I should become a vegetarian <laugh>. And we laughed about that. We had a good time. And I said, no, I don't, I don't think that's really gonna work. But you know, it's a good idea, <laugh>. Um, we find those moments to laugh and joke around, and we can find those more often when she's more with it and even when she's not with it. There are occasions that she'll say something and we both just chuckle and laugh. Those are moments that I cherish that I hold onto because there aren't gonna be a lot of them, and she's just going to continue declining.
Speaker 1 00:18:42 She's just gonna continue struggling, and we are going to continue adjusting since February. So I am recording this in July of 23. We got her on those meds in February of 23. And in just these six months, even though yes, she improved and she was doing so much better, she has declined again. And I we're not as bad as we were back in November, but we're close. So it bought us a little bit of time, but even though you're on those meds, the disease progresses behind the scenes. And so we have now since changed meds. Here's a crazy thing for you. My mom is lactose intolerant. Lactose intolerance has a range of effects on the human body depending on how badly lactose intolerant you are. And my mom was dealing with stomach issues and in May she started to really complain about it. I was like, mom, let's talk about this. And she said, it feels like it's gone on for years. I thought about it and I worked back and I remembered that she had kidney stones and that when she had kidney stones, we did scans. The doctor was pushing on her stomach, we checked everything, and she didn't have this kind of pain back in February. So I knew it was a sooner, a more recent event, I started doing research.
Speaker 1 00:20:18 Your job as a caregiver or as person who is dealing with it will end up being a ton of research. And I found many medications have lactose as an inactive ingredient. Depending on what manufacturer is making that medication. They can choose to put lactose as an inactive ingredient, and then they just mention in the side effects that it, it might cause stomach upset. Well, duh, if somebody is lactose intolerant, they're going to have stomach upset. Well, stomach upset on top of the Lewy bodies, on top of meaning on top of the dizzy hallucinations. Um, it means that mom's not sleeping well. If mom's not sleeping well, then the hallucinations are worse, the confusion is worse, the forgetfulness is worse, the shakiness is worse. All of her symptoms are increased when she cannot sleep and when she's stressed, all of those symptoms are worse. Well, guess what happens when the symptoms are worse? She's ga, she's anxious and she's emotional because she's scared, because she doesn't want to be so incapable of living life. She doesn't wanna be stuck in miserable life, not being able to do what she wants to do, not being able to function. She doesn't like being so scared. And yet that's the lot that she's been given.
Speaker 1 00:21:57 So I go to the doctor and I say, Hey doc, we need to fix this. And the doctor says, talk to the pharmacist. And the pharmacist says, we can't do anything. Talk to the doctor, put her on a different med. There are only so many meds that you can put someone on for Lewy body dementia for those specific hallucinations, and many of them have lactose in them. So what do you do? Go to the manufacturer. Right now we have resorted to having her take a lactase pill with every one of the meds that has lactose in it. And that pill helps counteract some of it. And so instead of the having the gassy bloy distended, miserable feeling at a seven out of 10, it's down to a two or three. Well, that's manageable considering the benefit that the drug is giving her. There are always side effects and you just don't know what those side effects are going to be.
Speaker 1 00:22:58 Another crazy thing there is such thing as medication induced diabetes. My mom has always been borderline diabetic, or at least for a very long time, and now she is full-blown diabetic and she, we are having a hard time keeping her, her numbers down. And I just discovered that medication induced diabetes is a thing and that the one medication that is fixing most of my mom's symptoms, improving them all the most is most likely the culprit causing the medication induced diabetes. Well, do you go off of that med and fix the diabetes, but then you have to deal with the shakiness and the, the hallucinations and the confusion and the memory problems and, and the weakness? Or do you stay on that med and then start dealing with the diabetes? That is where we are at right now. My mom seems fairly stable at this moment. We're in the process of getting a different doctor, and I'll go into that with a different podcast.
Speaker 1 00:24:10 We want to find somebody that can help us, who can understand what my mom is going through and help be a guide instead of me having to dive quite so deep into every little symptom and every med and every everything. I'm my mom's caregiver. That's what I do. That's who I am, that's what I'm going to continue doing. And yet it can be very exhausting and overwhelming doing that. As my mom is stable right now, I encourage all of my siblings come see her. She can't travel by herself. She would not be able to handle that. So either I need to fly wherever or drive wherever so that she can see my siblings or my siblings need to come here. The challenge with that is if she goes to my siblings house, then she's out of her normal state. And if she's out of her normal comfort zone and her normal routine, then she declines a little bit and she's more confused because she doesn't have that routine, which means my siblings have to come here.
Speaker 1 00:25:14 It's a challenge. It's difficult when you have kids, when you have a job, when you have your own life and your loved one is in a different state and you are trying to get there and trying to support the caregiver. And there's not a lot you can do. And you know that you only have this finite amount of time, which is unknown. You may have two years, you may have eight years, you may have 10 years. You don't know. No. You just know that this is a reminder that none of us get out of this alive and that you are losing a parent or a loved one.
Speaker 1 00:25:54 I'm grateful that she's generally stable right now. I'm grateful that I get to spend that time with her. And we can laugh and joke and reminisce about old times. We can listen to music that she loved and cherished. I can, we talk about books she loves to read right now, and as long as her eyes are okay, then she can read. And she might be get an hour or two a day out of reading, but then her head shakes too much or her eyes have started vibrating inside of her head. It's hard being the caregiver because you're constantly working on that. It's hard to be present in that moment and acknowledge that there's more to it than a patient that you're giving care to. This is still a loved one. And how do you connect? How do you be more like, how do you honor the caregiving part and still keep the relationship? And if it's a parent that you have a bad history with or a loved one that you've got a rough history with <laugh> and there's no way that you're ever going to be able to soothe those issues, how do you deal with that? How do you say it's okay?
Speaker 1 00:27:15 I know I'm upset and frustrated with you for the way that this went back then, and yet I'm gonna dig deep now and love and support you as you go through this. How do you find that depth? And I'll tell you my answer is I found a, I found a therapist who is versed in caregivers and she's been fantastic. However you do it is however you do it. And yet you have to find a way to set that aside so that you can try to help them as they transition out of this life in a really rough, challenging way.
Speaker 1 00:27:58 Find the joy, find those funny moments. Tell them jokes. Help them laugh. Encourage them to do things that they loved before. Share moments that you can with them. That's what I'm doing, that's what I'm trying. And, um, sometimes it, it's beautiful and it works well, and I walk away feeling more uplifted, remembering she's my mom and I have good history, just like I have bad history. So you're doing okay. You're not alone, even though sometimes you feel like it. I'll give you another update later on how my mom is doing. And there are so many topics that I want to cover on this podcast. I appreciate you being with me. I highly encourage you to do self-care. If it's not every day, then I hope you plan in a couple of hours or moments each week to give yourself a little bit of a gift of rebooting, refueling, and grounding while you go through this. I wish you the best. My heart goes out with you. And until next time, we'll see you again here on Lewy Body and Mindful Caregiving.
