Episode Transcript
[00:00:10] Hello, and welcome back to Louis body and mindful caregiving. I'm Crystal Jakowski, your host, and today I am giving you an update on where my mom's at, where she's been, and how her decline has gone. So I'm going to give you an inside look into my life and where she's at every week. I start with self care because it is so hugely important.
[00:00:34] And what did I do this week? I actually held a death cafe, and this is where we have coffee, tea, and cake and talk about anything that is end of life on our minds. And that was a huge boon and a gift to me in that moment. So I'm very grateful to jump right into today's topic with my mom and Louis body.
[00:00:57] I haven't really known, really where to go with this one and where to start and how to make this a very measurable timeline for you to follow along with me. I'm going to do my best. I've made some notes, and I'm hoping that you can see and understand how it's gone, how it started, and where we're at now.
[00:01:20] We moved my mom to Colorado in 2018, the latter half of 2018.
[00:01:29] At this point, she had been living in Utah. She had retired from her job in February after she had her birthday. She due to retiring, in my opinion, she became more of a recluse. She started closing herself off. She didn't go out of the house more. She didn't have a reason to go out of the house as much. She started to become a little bit more depressed. I would call her and check in on her, and she was very emotional, very tired, and she would tell me about how she was falling a lot. And due to that fact, I was know we've got a problem.
[00:02:08] And we had already always told her that when we moved to Colorado, we would make sure that there was a space for her that she could move in. We just needed a little bit of time because we had bought a property and we knew that we were going to be able to build a mother in law unit, but we didn't have that unit built yet, so we needed some time. But as I continued talking to her and she got more and more depressed and she was falling more, we decided we needed to bring her to Colorado here. And we put her in this wonderful retirement community, 55 and older, that had a movie theater, and they had craft rooms, and they had social hour, and they had karaoke night and hair salon. They had a pool, all of these things that she could easily do, all she had to do was step out of her door and go down and see what was going on. And at that time, she still kind of stayed more in her room, but she did at least go out, and she would go to Friday night, movie night, or she at least knew some of her neighbors and got to know them. She was still falling at that time, and it was very concerning to me that she was falling. So I did research. I dove in and learned that one of her medications was actually causing her to fall. This was kind of the beginning of my being a caretaker for my mom. September, time frame of 2018.
[00:03:34] Now, since then, so much has happened at one point, so she lived in this housing for 18 months. We finished her mother in law unit right outside my back door in April of 2020, which was right when Covid was starting to peak. And I was very grateful that we could move her onto the property from a distance. When she was at this other place, I was watching her. I was watching how she was doing. I was helping. When she was struggling, I started going to all of her doctor's appointments because I recognized that she wasn't being fully clear or honest with the entire picture. And whether she wasn't telling me the truth or wasn't fully being honest with the doctor, however that was working, there was something not quite right. So I started going to the doctor with her before 2020 to make sure that things were properly addressed, that she was okay. And at that time, she was still able to make her doctor's appointment. She was able to live largely on her own, not a big problem. And then she moved on to the property.
[00:04:46] There was one incident while she was living in the other place that was finances. That was really od, because at one point, she came to me, her rent at that place, we were subsidizing her rent so that she could stay there. And she was only paying $550 a month. And she came to me one month, and she said, I can't make my rent. And I was like, what's going on? Why can't you make your rent? And she was very willing for me to go ahead and look at her finances to try to understand what was going on and where her money was going. And I found at that time, she was spending $800 a month on an online farming game, one of those that says, click here and get an extra 500 coins for $20.
[00:05:36] She was spending $800 a month on that. So that was a clue. She had been falling, and then critical thinking was a little off with that. And then she's on the property, and while she's here. I'm starting to notice just little things as well that doesn't quite make sense. Over the next couple of years, I would watch, and her radius was diminishing, meaning that she would drive less and less. She was starting to kind of opt out of driving and ask me for a ride more often.
[00:06:18] She would go to the store, or she would need to go to a store that was up in Longmont instead of down here in Lafayette, and she couldn't remember how to get there. That was another something's going on. And that was between middle of 2020 into 2021. And I was kind of like, that's something to pay attention to. And it just kept shrinking. She kept forgetting how to get places. And her realm, literally, her world just continued to shrink and come in more and more and more. So this was another flag for me of, oh, something's going on now.
[00:07:03] My mom, in June of 2022, ended up with a herniated disc in her back, and she was struggling a lot with that, and I helped get her back on her feet. And during this time, she started seeing the Louis, which she calls them the Louis. It is a hallucination. It looks like the walls are crawling. It looks like the pictures on the walls are moving down the wall. If there's a pattern on the floor, the floor is moving.
[00:07:35] This visual disturbance was a serious concern for us. And so we went to multiple doctors. We went to an eye doctor and had an exam to see if there were any floaties or any other things in her eyes that could be causing this. We went and had an MRI done to see if there were any issues, obviously, with the brain. We went to an ear, nose, throat specialist, who was like, well, she might be dizzy because of this. And I was like, no, she's not dizzy.
[00:08:04] This is a visual disturbance that she's having. And they were like, well, no, we don't see anything wrong.
[00:08:11] So that was the beginning. And in September, I had a gut feeling that we were dealing with some form of dementia. And I asked my mom after we had gone to these other doctors, and nobody had been able to give us an answer, I said, mom, I would love to get some testing done. Are you okay? If we do some of this neurological testing and see if it is what's contributing to this visual disturbance, and if it is contributing to this visual disturbance, then maybe there's a medication that can help work it out and help make things better.
[00:08:44] So I was able to get my mom to do the testing, and that is how I know that she has Lewy body dementia with parkinsonian tendencies. Now, the parkinsonian tendencies are a head shake and her hand shakes. And when she tries to use a mouse on the computer, and this has been going on for years, I had noticed that she would try to use her computer, and her hand would shake so much that she'd have to put her other hand on top of it for stability to be able to move the mouse around.
[00:09:15] I had asked a doctor a year before, in 2021, if we need to worry about this shake. And the doctor said, and I quote, it's probably just normal aging tremor. It'd be a waste of money to go to a neurologist. Don't worry about it. So I didn't worry about it, and that was fine.
[00:09:39] But then all of these other symptoms start coming in, and I find out she's actually got Lewy body. So at this point, my brain starts looking back and seeing all of the things that have led up to this moment, to where I needed to get a diagnosis. And I recognize that my mom has absolutely been declining. I have been her caregiver since August of 2018 when she moved to Colorado.
[00:10:08] I'm going to give you a rundown, and I'm going to be as specific as I can. And it's really kind of extremely difficult to be specific in this realm because Louie body is so chaotic and unspecifiable.
[00:10:24] It is so different for every single human being, and it's hard to pinpoint. And so I really kind of want to give you an overview of a few of the markers that I have watched on my mom and have brought us to this point. And I've made some notes so that I hopefully am able to follow through and really give you a visual.
[00:10:46] My mom has and continues to be perfectly fine taking care of her own hygiene. She is religious about brushing her teeth every single day and flossing. She takes a shower every night before she goes to bed. She still makes her own bed. She still does her own laundry, and gets dressed all by herself.
[00:11:08] She is largely self sufficient in that realm, in that we talk about cooking. My mom used to cook some kind of meal, and they were often easy, simpler meals. You open a can and you dump it in and you put this one in, and then you throw it in the oven, and then you're pretty well good to go. So my mom was good at doing that kind of thing for herself. But over the last couple of years, and especially this last year, she has gone from cooking for herself to only doing freezer heat and eat meals to very very simple. Like, she'll make herself a grilled cheese sandwich and a bowl of soup, and she might open a can of vegan Alfredo sauce and dump that into some cooked pasta, and that's pasta Alfredo. Or she'll add cheese and call it her Mac and cheese. She'll do the Mac and cheese, but she largely goes for grab and go. My mom is to the point where she would rather, if it's not just ready, for her to grab it and eat it, she doesn't really want to deal with it. Additionally, my mom cannot stand for more than five minutes before she feels weak, like she's going to fall over. Now, this is a symptom that my mom has had off and on since we had her diagnosed. And sometimes we've been able to pinpoint it a little bit. And other times it just impossible to know what's causing it, whether it's one of the meds or whether it's the lewy body dementia itself causing the problem. But she is now to this point where we can't fix it. And she just is that she struggles that much.
[00:13:06] My mom is able to order groceries. My mom has been able to do that for a while now. When she drove, she would go to the grocery store and get what she wanted. And then I taught her how to do Instacart or Kroger and order it directly from the store. And she's been able to do that for quite some time. But she gets very confused. And this is a thing that seems simple for people to get mixed up. My mom will order something that says it's gluten free.
[00:13:42] My mom is lactose intolerant.
[00:13:46] She will get something that says gluten free. I will see it in her fridge and say, mom, this has a ton of dairy in it. And she'd go, oh, well, maybe that's why I've had so much diarrhea. But it says gluten free right there. Crystal, it's gluten free. And I say, mom, you need lactose free. Well, it's organic, crystal, it's organic, so it should be fine.
[00:14:12] Mom, it's the milk that you have a hard time with. Now, this has gotten increasingly more of a challenge because she wants to be able to enjoy those things, and yet then it gives her diarrhea. And then I have other symptoms to deal with. So I am now constantly watching and looking in her fridge, checking out, because I still want her to have a little bit of autonomy and feel like she has control over her life. And yet having that control can cause some really horrible symptoms for her to have to deal with and make her life a little bit more miserable. So I need to go check and make sure that she is actually getting dairy free instead of gluten free food so that it will be better for her and her system and her longevity. My mom medication, she used to be able to deal with her medication and it wasn't a problem. And even when we switched up a new med, I would have to tell her once or twice and she would be like, oh, yeah, I take that. At night. She has this medication set, and it has seven containers, and each container has four different times of the day that mom can fill.
[00:15:33] She's used this for years. This is an over learned behavior, meaning a behavior that she has done so often that it is second nature to her. She doesn't have to think about it. She fills the thing every Saturday, and then she takes that through the week, and then she fills it on Saturday and she takes it. It is to the point where my mom cannot be allowed to fill her own medication thing because she always messes one or two meds up.
[00:16:01] She gets them in the wrong place, she forgets to put them in completely, and the other night, she actually forgot to take her meds. So in the last six months, this has dramatically increased to where I need to be here on Saturday, every Saturday, so that I can make sure that I can help her with her meds, because she just cannot get it right. She cannot. Like, her brain is not functioning in that realm anymore because she has declined to that point.
[00:16:35] I've already mentioned that she was driving. A year ago, when we got the diagnosis, I was able to say, mom, you can't drive anymore.
[00:16:44] You can't drive anymore because you might not remember what's more important, the ball that goes out into the road, or the little kid that runs after it, or, mom, you really want to be remembered as the nice lady that was baking cakes for people instead of the old lady that hit somebody, caused some sad accident.
[00:17:10] So we took her keys away. Now it is to the point where I have to hide the other car keys because my mom has made comments to people. I know where the car keys are. I could just go for a drive.
[00:17:25] There's this part in her brain that just wants to go for a drive.
[00:17:30] My mom will say to people, I wish I could go out more.
[00:17:34] The first time I heard this, I felt guilty. I took it very personally, and I felt guilty like I wasn't taking my mom out often enough. But then when I talked to her and really understood it. She explained to me that she wishes she could go out more. And it's not that I'm not taking her out. It's that her disease has caused her so much deterioration and frustration that she doesn't feel like she can go out. She doesn't feel capable of going out. We used to be able to go shopping.
[00:18:09] We would go to Kohl's. She would return an Amazon order, and we might walk around the store for a minute and see if there was any cute new blouse or a cute new necklace that she would want.
[00:18:20] Now it's, I'll just sit in the car while you go run it in.
[00:18:26] In one year, it has gone from let's go shopping together to, I can't do that. You just go in for me. It's a big change. It's a big shift. In one year.
[00:18:40] My mom used to be able to make doctors appointments for herself, and it is to the point where now the doctors solely talk to me.
[00:18:49] I talk to the doctors through the patient portal. I let her know what her symptoms are, what's going on. We work on adjusting the meds and whatnot. I make her doctor's appointments when we need to go in to see the doctor because my mom deteriorated to the point where she was like, well, the doctor's appointment is on Monday.
[00:19:12] This Monday? Next Monday? Monday in March. Like, what Monday is that doctor's appointment? And she didn't remember. She was very insistent that it was on this Monday. And we went in and checked in at the front desk, and she said, oh, I don't have you down for today. And she looked at the calendar and she said, oh, you're for the first Monday next month, so we'll see you next month. My mom was very adamant and she was very positive that this was the day and she needed to go into her doctor. So now I make all of her doctor's appointments, all of her dental appointments.
[00:19:50] A year ago, her teeth were fine. Now, due to the medications, she has what's called dry mouth. And this is very common in people with dementia, Alzheimer's, and who are on specific types of medication where there's not enough saliva in the mouth to help mitigate the germs that are in the mouth. And because there isn't saliva to mitigate those germs, you end up with more cavities and more tooth decay. My mom, between September and no, August and the 1 October, lost five crowns, had one cavity, and we had to pull one tooth in two months. Now the dentist is an extremely anxiety ridden experience for her. When we go into the dentist, she sits in a chair. I cover her with a blanket. I sit next to her, and I keep my hand on her lower leg and her knee.
[00:20:50] I notice when she starts to tense up when she's anxious, and I just gently rub her knee, or I give her a little squeeze to remind her that I'm right there. I talk to her.
[00:21:03] I talk to the dental hygienist so my mom can hear my voice and knows that I am present. This is what has helped to calm her down. We tried antianxiety meds, but they just made the hallucinations and the woozy weirdness worse. And mom said, I don't want to take those things because it makes me even more anxious because I am afraid that my disease has declined.
[00:21:27] So dental has been a big thing.
[00:21:33] Sleep.
[00:21:35] It is extremely common for sleep to be an issue for people with lewy body dementia, and they often fall out of bed. They get out of bed and act out their dreams and whatnot. My mom just doesn't sleep. We have her on a CPAP machine. I noticed that back in, I think it was late 2020, that I noticed that she was really confused and struggling. And so we got a sleep study done and that we put her on a CPAP. And putting her on that CPAP, she improved. She wasn't as confused. Her memory was a lot better. She wasn't as emotional and whatnot. So getting that sleep study really helped for that moment. But we are now to the point where even with the CPAP machine, she just struggles to sleep. And part of that is pain.
[00:22:29] I don't know how much of this pain that my mom talks about is psychosomatic, like, in her head, and part of what she's going through and how much of it is real pain, but she's constantly got a new thing. My heel hurts, but it only hurts when I walk. My hip feels like it's going to go out whenever I walk.
[00:22:53] My hips hurt when I sleep, and I lay there for a half an hour, and then I have to roll over. My wrist hurts, and I think it's because I play too many games on the computer. She plays games for a half an hour, and then she doesn't do anything else. And her wrist hurts, her throat hurts. She's always got something new, and she's started hiding them from me for fear that I will think she's just complaining.
[00:23:20] She's always got a new pain.
[00:23:23] This is new. She didn't used to be that way. It used to be, oh, I got a headache. But she would blow it off, and she didn't really want to take meds for that. She would push it as long as she could, hoping that the headache would go away, and then she would eventually take something. Now she's to the point where she says, I just want the pain to go away. Isn't there a pill that can make the pain go away? I just want to sleep. Isn't there a pill that can make me sleep? My mom no longer wants to chase down the reasons behind what is going on for her. She just wants it to stop.
[00:23:58] When I asked her the other day how she was feeling and where she was at, she let me know that 50% of the time, she just wishes it was all over, that she didn't have to deal with it anymore and that she wouldn't wake up tomorrow.
[00:24:14] 50% of the time, my mom's done.
[00:24:20] I did buy her an apple watch. Now, this apple watch is for my benefit more than it is for her. Apple watches have the ability to pay attention to the pulse of the person. It can pay attention to the sleep of the person.
[00:24:38] My mom was having a little bit of chest pain, and she's also got swelling, but the chest pain was up in her throat, and she was having a hard time swallow. Well, that can be acid reflux, or it could be something with the heart. Getting an apple watch and having her wear, that helps me be able to monitor it without being invasive. On my mom, she recognized the way that I put it to her was that I wanted to just experiment and see how things were going and see if this could keep an eye on her heart, because she's definitely been paying attention to her heart.
[00:25:13] And so I got her buy in on the heart aspect of it, and she's more than willing to wear it at night and during the day, she charges it for a couple of hours in the morning while she's taking her other meds and playing her games.
[00:25:31] Now, when I got my mom tested, when she agreed to do the testing and they had their diagnosis, the neurologist let me know that there is this phenomena where people.
[00:25:53] There are some people who have kind of, like, a really good grasp on vocabulary, have an expanded vocabulary and great retention in that realm. So they'll have other problems and other confusion and forgetfulness, but their vocabulary will be very intact. And because their vocabulary is so intact, they are able to convince people that nothing's wrong. They are able to find workarounds on some of the questions that you ask. Or some of the issues that are there. A great example of this is somebody is very much impaired. They've had a concussion. And you can tell that there's a major problem. You ask them their name, and they're like, of course I know my name. It's John. Whatever. And you ask them a couple of other questions, and then you say, do you know who the current president is? I don't want to talk politics, and I don't appreciate you bringing it up.
[00:26:49] They don't know who the president is, but they have enough wherewithal to be able to hide the fact that they don't know who the president is. And they're going to let you know that they're offended that you would even ask politics.
[00:27:03] She let me know that my mom is kind of in this space.
[00:27:07] My mom is uneasy. In the beginning, my mom needed to put her hand on the back of my arm when we were going somewhere. Because she was a little unsteady. And just needed a little reassurance of what was stable.
[00:27:22] It has progressed to where she has to loop her arm around. And she leans when you're walking together. Because she needs to know that you're there. And she has a hard time walking straight. Or she feels like she's going to fall over when you ask her, hey, I have this cane. Would you like to use it? Maybe it'll help. She will very obviously say, well, if that cane is in my right hand and I start falling to the left, then it's of no good, is it? Why would I use the cane? It's a very plausible excuse. It's a very plausible explanation of why she doesn't use the cane. But she's really just avoiding the fact that she doesn't want to use the cane because somebody else is there. And she doesn't want to look old because you can say, well, okay, but there's this hot purple walker that would give you that balance. Or, look at these hiking sticks that I've got. And you could have one in each hand and help you walk while you're going, no, that looks like she's impaired. She won't have that. So I am just going to lean on somebody else and let you know that it's stupid that you ask this question.
[00:28:28] It's impressive to the point that we recently had a gathering, and my sisters and brothers all came. And afterwards, I was talking to my sister, and she talks to my mom every Wednesday morning. And in this conversation, it's beautiful. My mom loves the connection, and she loves to tell me everything that they talked about and give me the updates.
[00:28:54] But when my sister saw my mom in person, she said, the person I hear on the phone and the person that I see right there are two completely different people on the phone. I would never know that she's so ill in person. Holy cow, that's different.
[00:29:10] My mom is on that range, and it's Louis body. This is one of those things where you wouldn't know, and it makes it look like she is way better off than she is, especially if you're there from a distance as a little bit of a wrap up. Maybe not. I asked my husband's assessment of what he thought was the progression between two years or five years ago and now, and I want to share some of his insights with you.
[00:29:37] He said that when we had visitors, my mom would hang around a lot more. She would come over and sit with us and just be a part of everything that was going on. She doesn't do that anymore. She comes over for a meal, and she goes back home.
[00:29:51] He said, baking. She used to bake all the time. There were weeks that we had three and four different sweet treats in our house because mom was in a baking mood, and she just wanted to bring us all of these goodies, and it was her way of thanking us.
[00:30:08] My mom almost never bakes anymore.
[00:30:12] Not only that, when she did bake, she would experiment, and she stopped experimenting. A while back, she would say, I want to experiment, but then before you go out to help her experiment, she would make it the same way she always did and move on. But that stopped months ago.
[00:30:32] My mom no longer wants to do her hair, and I support this. We have now bought wigs so that she can find something that feels a little bit better. You see, when my mom does her hair, she uses hot rollers, and it burns her fingers, or she just can't get it done, or she uses a curling iron. And when she uses that curling iron, she burns her fingers, she burns her ears, she burns her neck. She's actually hurting herself. So instead of doing her hair, we have now gotten wigs so that mom can just pop that wig on in the morning and she's done. Makes it a little bit easier. It's a completely different thing because my mom used to take pride in having her hair done. And before we got to wigs in the last six months, my mom does her hair rarely.
[00:31:16] I rarely see her with her hair done.
[00:31:21] Puzzles.
[00:31:23] My mom loves puzzles.
[00:31:27] She was doing a puzzle a day almost. She was doing at least four to five a week, and she could do it in a couple of hours, and it was no big deal.
[00:31:37] Now, puzzles take twice as long. They are way more upsetting and frustrating for her, so she doesn't like doing them as much. And her back hurts for two days after she does a puzzle, because her back hurts, she doesn't like to do them.
[00:31:52] Something she loved to do, like baking. Puzzles have now started to be nonexistent movies. My mom has a collection of over 800 movies, and she used to joke around that that was going to be our kids'inheritance.
[00:32:08] And she doesn't watch the movies anymore.
[00:32:14] And she will go ahead and get something on Netflix, which is great, but she won't use the VCR or the VHS at or, sorry, the DVD or Blu ray at all. She does have both of them.
[00:32:29] All of them. And I do have this big screen that will sometimes watch movies, and I'll invite her over, and she turns us down more often than not to watch a movie, which was something she would never miss out on.
[00:32:45] My mom is always cold now. Also another common thing with Louis body, that they just feel like they're freezing. So they add blankets, they add socks. They kind of just eskimo up. I encouraged my mom to turn the heat up in her house. She turned it up one degree, and then she told me it was too hot, so she turned it back down, and then she put all of this stuff on.
[00:33:09] She's always freezing, and her brain can't figure out it's okay to turn the degree up a little bit, and then you can take off all of these things. It's almost like all of the clothes, all the socks, the hoodie, and the blanket that she's wrapped up in are like a protection from the rest of the world.
[00:33:31] We have a pickup truck, and every now and then, I need to take the pickup truck to go do something.
[00:33:36] My mom used to be able to get in and out of the pickup truck with no problem whatsoever. She could hop up and down, and we could just go for a little ride.
[00:33:44] It's to the point where if we want to take the pickup, we need to take a step stool so that she can get up into the step stool or into the truck, using the step stool and then using it to get out again. And even then, she has a difficult time because she doesn't know which knee is the strong knee, and she can't get her body weight up into the truck. She has a difficult time getting off of chairs couches unless they have a higher supportive armrest for her. My mom is definitely declining. It is obvious and in preparation for this update, for you guys to know exactly where she's at and where she's come from.
[00:34:26] It was heavy and difficult to acknowledge that this is where we're at.
[00:34:34] To acknowledge the absolute shift from five years ago to right now.
[00:34:48] I am all over the board personally. One day I'm okay and I'm fine. Another day I'm struggling and having a very difficult challenge accepting everything that's out there.
[00:35:00] Some days I feel all the feels at the exact same time. And I might be laughing and having joy and crying because or angry all at the same time and I come off as just this frenetic, weird chick.
[00:35:15] And those are the days that I have to pause and say it's okay, that I'm all over the place. I love myself anyway. I love my mom. I'm going to see what I can do for self care to help myself out because it's overwhelming.
[00:35:30] My relationships with my siblings has changed and it's hard because now when I talk to my siblings, the conversation always goes to mom because they want to know how she's doing.
[00:35:43] And that's not a very positive, uplifting conversation.
[00:35:51] So it's sad and it's down and it's weighty.
[00:35:58] So I work hard to try to not be negative and to try not to be complaining and to just acknowledge this is where we're at and this is how life is right now and that will change.
[00:36:13] I'm managing my mom's symptoms now with the doctors because my mom just wants the pill, because my mom just wants to control the pain.
[00:36:24] She doesn't want to chase it down on her back hurting or her wrist hurting. We could go to PT and she could do the physical therapy and she could improve and be better. My mom doesn't want to do that.
[00:36:37] She no longer wants to put in the work to understand the why behind her upset or her pain, and she just wants to move on.
[00:36:47] For that reason, we're moving more into comfort care. We're not doing the diagnostic, long term, life prolonging tests. We're not doing colonoscopies. We're not going to do mammograms. We're not going to do the stuff that would let us know if there was a major problem.
[00:37:11] We are simply managing her symptoms and helping to ease the challenges that she is going through.
[00:37:23] I'm grateful that I've had conversations with her about her end of life, about her wishes, about her directives, where she wants to be, where she doesn't want to be at what point she wants to be let go. And that's a challenge. On the one hand, she says, I just wish I wouldn't wake up. And on the other hand, she's afraid of dying. She's afraid her dad won't approve of her and the life that she lived. And if she dies, she has to face him, and she doesn't want that. How do you help her find peace, knowing that her body on this earthly plane is shutting down and that the time to let her go and meet her dad again is closer?
[00:38:18] I'm managing her symptoms. I am working to do right by my mom and by myself.
[00:38:29] I'm working to make sure that I won't have regrets down the line.
[00:38:36] My therapist, my talk doc is fantastic.
[00:38:42] And she even did an emergency session with me right before the holidays because I needed her support and help in that moment.
[00:38:56] I don't really have a light spin on this one. I don't really have an uplifting, hey, it's all good. Because this is real. This is where I'm at, and this is where my mom is at. And it's really hard to acknowledge that, accept that and say, okay.
[00:39:18] And yet, it is what it is. So I'm doing my self care.
[00:39:23] I'm reminding myself that it's okay. I'm connecting with her and working through everything as best as I can.
[00:39:38] I'm trying to help her work through it, too.
[00:39:41] I'm trying to look for the little rays of sunshine and the little bits of joy, the little happiness that I can do. Let's go for a pedicure. And instead of doing it once a month, maybe we do it every three weeks or every two weeks. Not that we need a pedicure that often, but because it gives her something to look forward to, I look for ways to bring her a little bit more joy. Knowing that she cries every day and she has such a hard time regulating her emotion, which is part of Louie body losing that ability.
[00:40:21] My mom and I are going to work through this.
[00:40:28] I will help her body, her spirit to move on in the most compassionate, loving way I possibly can. And in the same aspect, I will be as loving and kind to myself in the process. My husband is amazing and has been coming to my aid and supporting me in beautiful ways that I am so very, very grateful for.
[00:40:54] So thanks for listening.
[00:41:00] I'm wondering if you've noticed some of these things with your loved ones, too. The lack of interest in so many things that they used to do. The apathy, the inability to function or make really good decisions, the weakness, the unsteadiness, the crazy things that.
[00:41:24] The fact that she can talk and make you think that everything is fine and she's absolutely fine because her vocabulary is so good, and yet you see all of the other symptoms, all of the other systems of her being struggling and shutting down. And that's a really difficult conundrum to have both of those at the same time. To verbally think that they are fine because of the way that they talk, and yet to visually, physically, mentally know and see the difference.
[00:42:00] Pay attention to the signs. Pay attention to what's there.
[00:42:05] Do your research.
[00:42:07] Talk with the doctors. Don't accept a brush off. Find another opinion if you need to do that. And above all, do some self care. Self care. Self care. Self care. Self care.
[00:42:21] Self care. If you're going to make this, make it through this in the best way possible. You've got to give as much to you as you give to your loved one.
[00:42:31] This was a long one. It was a heavy one. I hope you go have a wonderful meal or something fantastic to fuel your soul and help you through this moment. Thank you so much for coming. Thank you for listening.
[00:42:49] I'll see you next week again. Until then, take care.
