Episode Transcript
[00:00:10] Hello and welcome back to Lewy Body and Mindful Caregiving. I'm Crystal Jokowski, your host, and I'm glad that you're here. I hope that you're doing okay and that you've been giving yourself some self care and reaching out for the help that you need. Today I want to talk about a health update, where my mom is at currently in the decisions that I have made in that arena, that vein, and we always start with self care. So what have I done for self care? I've kind of been throwing everything at it, trying to find something that sticks. I've gone to a couple of lunches with friends. I've let myself be vulnerable in expressing the challenges that I'm dealing with and allowing people to give me love and compassion instead of just pushing it off and ignoring it because I'm uncomfortable with that.
[00:00:54] I've been in the Pottery Barn. I gave myself a new comfy chair to sit in. Um, so I've just kind of been doing a lot of things and. Oh, I got a massage too. So just working on me to try to add some of whatever it is that I need at this time, in addition to having asked my siblings for help. So I want to give you a health update because my mom fell and broke a rib. That means added pain meds and all sorts of other things. And because of this, it just feels like a good time for me to update you on what's going on and where we're at, how she's doing in the big realm of Lewy Body. So back to the original statement. My mom fell. And this is hard because she fell at 3 o'clock in the morning and she texted me and she called me and I had my phone on vibrate so I did not hear it. And when I finally woke up at 6:30 in the morning, I saw the message that she had fallen, which made me feel absolutely horrible, extremely upsetting to know that my mom had been in pain for that much time. She was able to get up off the floor and get into bed and lay there until I was able to get there, which minimized some of the pain. But that doesn't negate or completely obliterate the guilt that I felt and having my phone rung on the wrong setting so I couldn't hear her calling.
[00:02:32] What happened was that my mom has been feeling more and more dizzy. She's been really struggling with many of the symptoms of Lewy Body, and dizziness is one of them for her.
[00:02:44] And she had gone to the bathroom at three when she was sitting on the toilet. She felt dizzy and so she waited for a minute and then eventually she thought she could stand up and she'd be okay. So she stood up and she leaned on the door jam to pull her pants up. And when she did that, she then took one step to try to get to the bed. And in taking that step, she fell down and her left side hit the nightstand, totally broke the nightstand and broke rib number 10. She has a laceration as well on her left side. So she's got a nasty, nasty purple bruise and a lot of pain due to this, this fall.
[00:03:32] Now because of this, that's what brings me to wanting to share with you because these are things, these are hallmarks, these are, these are what everybody's going to have to deal with at some point. They're going to be falling more, they're going to be more forgetful, they're going to be whatever it is and whatever progress your loved one takes. There are things that you're going to say, oh, yeah, that's going on. And then there are going to be decisions that you have to make. So I want to tell you about these decisions and these challenges. So my mom is on a cpap. I've told you guys this before. And on this cpap, we put her on the CPAP because she was stopping breathing seven times an hour. Seven times an hour. That's why she's on the cpap.
[00:04:16] Well, since my mom has had a broken rib, she has breathing interruptions. Last week she had 12, no, 20 per night. And this week it's down to 14 per night. So it's improving. We believe it's due to the rib issues. But it begs the question of how much good is a CPAP doing if she's still having all of these episodes. Do we need to increase the pressure on the cpap? Do we need to change? It means another doctor's visit to talk with one of the specialists and find out what, if anything, there is to do about it. And is it a temporary fix because this seems to be since her ribs are a problem, or is this a long term fix because she's now struggling to breathe at night? We don't know. We're in the process of discovery at that one. We just learned that today. So that's number one.
[00:05:11] We had a blunt, a bunch of blood work done because we wanted to check in and see where she's at. Now, this blood work. My mom has been on diabetic medication for over, over a year now.
[00:05:22] Middle of last year, we Found out that her blood Sugars were at 500 and above that she was really struggling to keep them even. We tried to manage it with food and diet and reducing sugar and reducing carbs and all that stuff, and that was not working. That did not do anything. And so we ended up having to change medications because it turned out that her diabetes was medication induced.
[00:05:48] So we have to yet again change a medication to try to fix that. Well, even with the medication change, her numbers were still off. They would, they would tank really badly at night. She would go all the way down to 50 and sometimes during the day she would spike. So we have her on regular diabetes medication. She's currently on one called Jardians.
[00:06:10] On this medication. Her A1C has been great. In fact, in January of last year she was at 5.5, which is beautiful and perfect. Well, in May she was up to 6.5. Now, for older people, some doctors say 6.5 is just fine. It's not a big deal, nothing to really worry about. But two weeks ago we did blood work and now my mom is at 7.5. So in one year, her diabetes numbers, even though she is on diabetic medication, have gone up one full point.
[00:06:43] This begs the question, when you are allowing your loved one.
[00:06:49] My mom is on hospice.
[00:06:51] My mom does not want to get to the final stages of Lewy Body. My mom has stated that in her lucid moments, before this really started going downhill, we talked about her dementia directives. And her directives were that when she is in the middle stages, before she needs full time care, that she wants to be on comfort only and let her pass. She does not want to be dependent on somebody else 24, 7. She doesn't want to be in diapers. She doesn't want somebody to have to bathe her. She's very specific about this, her dignity.
[00:07:27] She doesn't want someone to have to cook and clean and all that kind of stuff for her. She wants to be able to live as independent of his life as possible and then just let herself go. So a 1C up 1 full point. Do we adjust the medication? The answer is no, because she doesn't want that. In addition to her diabetes numbers, we found that she has high blood pressure. Now, her doctor had sent a blood pressure cuff to her through this other company and this company, my mom would take her blood pressure every single day around the same time and those numbers were sent to an office that would monitor these blood result, these blood pressure results. If there was a problem, then they would call my mom's. Doctor. Or they would call me and say, we're a little concerned about this, maybe you need to go to the doctor. Or they would talk to the doctor and say, perhaps you should do something.
[00:08:17] So she has had high blood pressure for a month and a half now.
[00:08:21] And I'm not doing anything to treat it because at this time I don't want to add another medication and have to deal with how that works with the other medications and then go through a whole new upheaval on the medications that are already working right now. Besides, mom is on palliative and she wants to be let go before she has to need full time care. So we have her diabetes, we have her blood pressure. We also revealed that she has liver, that her liver is declining, her numbers are off and not good. And one doctor said, get her off of acetaminophen. Another doctor says, put her on acetaminophen because it will help with her wrist pain. Now, my mom has mild arthritis in her right wrist. What's mild to you and me is not mild to her because that is the only thing she has to focus on that is a discomfort. So it is a big deal and it hurts a lot. And acetaminophen seems to help. So the question is for someone else, do you stop acetaminophen so that the liver isn't damaged or do you continue the acetaminophen to manage the pain so that her quality of life or her comfort is better? So in this vein, again, again, we are not going to do anything different. I would much rather have my mom comfortable than I would have her in pain and struggling.
[00:09:51] If the trade off is liver damage, then that's what we're going to have to deal with because she just wants comfort care.
[00:09:59] Another thing my mom has is called a ventral hernia. Now, a ventral hernia is where there is a gap in the abdominal wall and inside tissue pokes outside of that abdominal wall. When my mom stands up, this looks a little. She calls it her grenade. It looks a little like an egg that's just kind of sitting there and she can push into it and it will go back in its place and it does a little blurble that she can hear. And then she goes to the kitchen and makes food or whatever it is. Now, right now, it is asymptomatic, it is benign, it does not matter. There's nothing wrong with it in the future. It could get large enough. It could be a problem to where there's loss of blood flow or she might need to have surgery, which in and of itself would bring its own list of issues. One of those, the largest one, being the fact that people who have dementia and go into anesthesia, into surgery often come back and they have declined in a dramatic way. It's just a phenomenon that happens. If my mom is in that position, I don't know the answer yet. I'm going to have to talk with my doctor, my mom's doctor, and figure out what is the best course of action. So you see, physically, my mom, health wise, is absolutely declining. Her body is starting to say, we're not doing so hot because of her dementia directives. We are choosing not to treat them. We are choosing to let them be as they are now. Of course, we're treating the pain for the rib. Of course we're treating the pain for the arthritic, arthritic wrist. We are treating the pain to help her feel more comfortable.
[00:11:43] That is what you do when you're working with comfort care. There are other symptoms right now that are upsetting to her that we cannot treat and we can't do because she's already on the maximum dosage for these. For example, my mom's shakes. She has Lewy Body dementia with Parkinsonian tendencies. So my mom has the head shakes and she has the handshakes. Her hands shake so bad. She has a couple of solitaire or maang games on her computer and she likes to play them every single day and make sure she does all five games. So then she has a. A gold star for the day and she likes to have a full gold star for the month. So my mom plays these games. The problem is that with the mouse, her right hand shakes so badly that she'll place her left hand on her right hand to try to get it to stop shaking enough that she can try to click on the different tiles. Her shakiness has increased dramatically and it's very frustrating for her and there's nothing I can do about it.
[00:12:45] Forgetfulness, she has started.
[00:12:49] She notices that she's forgetful and she will comment that she's forgetful and that she's very frustrated with it. When somebody's there and we're talking, she'll mention that she's forgetful and then she'll say, but I'm lucky, because Crystal speaks Carol, and she knows what I'm going to say. So she's grateful that I am able to intuit her words.
[00:13:09] And yet she's also frustrated that she's so forgetful.
[00:13:12] Physically, she's a little more weak. She can go for a brisk five minute walk. But then after that she's pretty well done for the most of the day. She might get up to go to the kitchen or get up to go to the bathroom kind of thing, but she's pretty well, I'm done, I'm tired.
[00:13:30] She can only stand for five minutes, stand still in the kitchen for five minutes. So like boiling pasta for to make spaghetti or something. She'll start the pasta and then she sits down and she hopes that she can get back to the pasta before it's too mushy.
[00:13:46] But with the dizziness that she has in on top of the shakiness and the weakness, it becomes a challenge. So there we are likely coming close to where she just won't be able to do that kind of cooking anymore. It'll be throw something in the microwave and you're good to go, or grab stuff out of the fridge and make a super fast sandwich and then you're going to have to sit down because she just can't handle it physically. She's declining in her general abilities, her general movement. I remember when I was doing a lot of research on Lewy Body and Dementia, one of the things that struck me was handwriting. And people would say that they were really frustrated because their loved ones handwriting used to be be so beautiful and now it's completely illegible. And this just kind of sat in the back of my head. But recently my mom looked at me and she said, crystal, I want to write a list of the people that I want to send Christmas cards to. But my handwriting is so bad that I can't even read it.
[00:14:52] My mom's handwriting has declined to the point where even she doesn't know what she was trying to say. She'll try to write a grocery list and then I need to try to decipher what is on that grocery list and what she really needs.
[00:15:08] Knowing what she's gotten in the past helps me kind of narrow it down. But there is no guarantee that I will be able to fully understand this new challenge with her shakiness and her handwriting emotionally. So we've talked about like medically, physically, then we've talked about physical, physical, emotionally. My mom is really needy and way more anxious all the time with me. She'll put on a good face for other people when they're on the phone, that kind of thing. And she'll be like happy and positive and looking forward to stuff.
[00:15:50] And then with me, she's super needy. Well, is that, is that the disease? And she's hiding it while she's talking to other people? Or is that reality? Is she using it with me to try to get more attention from me because I'm right here in person. My mom's always been really good with the guilt trips on me and I've always reacted to them. And she knows how to needle really, really, really deep. And let me tell you, lately her guilt trips have been off the charts, unbelievably off the charts. And it gets really difficult. It gets really difficult for me to navigate it personally and not take it personally when she puts those guilt trips on and try to let it slide off my back. But let me tell you, those barbs are some, some of those are poisoned arrows that really hit something and are very, very upsetting. This is her, this is her decline. This is her state of being. Her hallucinations where everything crawls up the walls and stuff or across the floor. Like the carpet looks like it's moving. They are way more intense to the point where even a gentle vein in the marbled tile and it's just a small vein and it's all tan and cream, so it's very minimal, is too much for her. We had to get a bathroom rug that was super flat and cushy that would cover as much as the bathroom floor as possible so that she wouldn't go to the bathroom and see them crawling and be upset.
[00:17:23] So this is her health update.
[00:17:26] She's definitely declining, she's definitely challenged in life and we are moving down the line. We are advancing in this disease. Just because she's on all these meds that have been so wonderful and so helpful in the past does not mean that the disease does not continue progressing in the background. And that's exactly what's been happening and exactly where she's at. And we are to that point where we are choosing not to treat things because her directives state, I don't want to be 24 7, I don't want someone changing diapers on me. I don't want anyone having me help shower. My mom understood what she was saying when we talked about those things. If I was to talk to my mom about it today, she's anxious, she's fearful, she's scared, she might think, nevermind, just do everything to keep me alive.
[00:18:25] And then there are moments that she's like, gosh, I wish I'd go to bed and not wake up tomorrow.
[00:18:31] So you don't know what you're gonna get and what answer you're going to get, which means that I need to be the advocate on her behalf. I need to be the one that says, okay, here we go.
[00:18:44] This is where we're at. And I can see the markers, I can see the shift, I can see the change. And I'm here to help you through this.
[00:18:55] It's not an easy task, and it can be very challenging to be that person for your loved one. And yet you are their voice. You are their mouthpiece. You are the one that ensures that they get to go out the way they wanted to.
[00:19:13] You're the one that makes sure that they get the medical need, the medical support, the help that they deserve, that they need because they can't verbalize and they don't understand it all the way.
[00:19:32] Give yourself some love.
[00:19:35] Do any research. You need to talk to your talk doc. In fact, this afternoon I'm gonna. I'm gonna email mine and say, when can we get in and have another session so that I can get some advice on the guilt trips and how to move forward with those.
[00:19:50] Our loved ones will decline.
[00:19:53] My hope is that I can help my mom finish through this and leave this world knowing that she was loved.
[00:20:03] Sometimes that's a challenge, Sometimes it's easy.
[00:20:09] And I want to make sure that I don't lose myself while I'm trying to help her through that. Because let me tell you, it's hard.
[00:20:16] There are days when I definitely put her needs above my own. Her desires, her fears, and her anxieties above my own needs and my own support.
[00:20:27] And I'm working through it, as I know you are too. Get the support you need, Give yourself a little extra self care, make notes on how things are changing so that when you do recognize or when you are concerned and like, is this different than before that you actually have a better answer. I have old documents that talk about the different medications that she's on and what her progression was. And I kind of have them every six months. Unintentionally, it's just magically happened. So I'm able to look at one six months ago and where I'm at now and go, oh, okay, there's definitely a change. There's definitely something. Even though I'm right in it. Because sometimes when we're in it, we don't see that decline as easily as somebody who's out of it and then comes in and says, whoa, that's different. So sending you all love, sending you all support. Thank you for listening, thank you for joining, and thank you again for your support and all of the comments that come in. So until next time, I wish you love and support and take care.
