Episode Transcript
[00:00:10] Welcome back to Lewy Body and mindful caregiving. I'm Crystal Jakowski and I'm glad that you're here. I hope that you're doing okay and that you're taking care of yourself today. I want to talk about anxiety and Lewy body and the challenges that it can bring up. But before I dive into that self care, always, always self care, what did I do? Well, I was invited to go on an early morning hike with a friend, and this was a trail I had never walked before, so I was a little bit nervous about it. And yet I just kept saying, I'm going to do this, I'm going to do this. It's going to be great. And it was amazing. It's a 45 minutes hike up to, like, partway on this trail. We didn't go all the way. And there was this beautiful rock that you could sit on and you could look out and see the vastness of the world and you could see all of these mountain peaks and you could see the continental divide from right outside of Boulder, Colorado. And it was just, we sat down on this rock and I just cried. It just felt so good to release in that moment and it was so beautiful.
[00:01:23] Heart opening and cleansing. So thank you, Mary, for a hike. And now we're going to move into the anxiety challenge and the discussion that I want to have today.
[00:01:36] Part of this episode. Today also hails back to episode 37, which was the medications, the good, the bad, the ugly about medications with Lewy body and I, this particular one, this is one of the downsides of medication.
[00:01:58] My mom, in the last episode, I talked about how she is a teenager and how she needs a little extra help and support in a teenager kind of way.
[00:02:12] And as far as like the doctor's appointments and whatnot. And she has had wrist pain for a while and we've been trying to trace down the wrist pain along with her refusing to do any diagnostics and whatnot. She's like, just fix it. Just fix it. I just want to take drugs. And we found out that it's arthritis and it's mild arthritis, but, um, in her dementia brain, it is not mild. This is a really big deal and she cannot function and she's having a hard time with some hygiene. And it's definitely a challenge for her. And I totally understand this because I understand that teenage brain aspect of things. But one of the things that we tried to help with her wrist washing round of steroids, because they have found that steroids can really help with inflammation and helping to minimize the pain. So we started on a round of this medication, and we wanted to do two pills at the high dose and then two at the next one down, and then three at the next one down, and then three at the next one down. And then she was off of it.
[00:03:31] And it sounded like a good thing. At least we could try it. And it's just another medication, but my mom is on so many of them that you have to watch the side effects party intensely. But if this helped, then we could do shots in her wrist, and then maybe it would give her a lot of relief, and it would be a lot easier for her to navigate through life as it is. It wasn't that we wanted to prolong life. It was literally that we just wanted to help the quality of life and minimize the pain that she was in.
[00:04:03] So we took the first dose of this medication, and I watched the side effects closely, and the major side effects that she had were just general fear and anxiety and having a challenge, sleeping. And these two just kind of start a spiral together.
[00:04:32] If they're not sleeping, then things are a little bit more difficult. It's harder to just navigate whatever life is.
[00:04:41] And so then you are a little bit more anxious or a little bit emotional, and then you go to bed the next night hoping that you're going to sleep, but you don't sleep, and so you wake up the next day, and you're a little bit more anxious, and that just continues. And with my mom, what happens with her anxiety is that she gets super emotional. She just wants to cry. Um, she is needy. She really needs me around to soothe and reassure her and. And keep things a little bit calmer. She'll ask me questions time and time again to verify and make sure that she knows what's going on in hopes that it won't be as scary as she thinks it was. Um, so she. The anxiety was just eating at her, and it was really ramping up. And we worked through this. We got her through the meds, and the pain never got better. So we kind of went through this anxiety issue for no. Like, there was no benefit from it. We just got to go through a whole bunch of anxious nervous behavior. But now that she's off that med, the anxiety has continued.
[00:06:02] The anxiety is very much still there. So we have increased her antidepressant medication, and we have increased one of her medications to help her sleep a little bit more so that she's not as anxious. Now, what does anxiety look like for my mom? For a teenager, she needs someone around.
[00:06:31] She needs constant reassurance and soothing.
[00:06:38] She needs to know that she's not alone.
[00:06:41] She doesn't really want to meet new people or be out in the world. She kind of wants to hide away. But in the same aspect, if she wants you and you are going somewhere, she wants to go with you.
[00:06:57] In many ways, I ended up having to adjust my life.
[00:07:01] I would go out to the pottery barn, and the pottery barn used to be a self care, soothing space for me.
[00:07:11] Now my mom comes out and she sits down and she does a puzzle. While I'm throwing pottery or trimming it or whatever stage that I'm in, my mom wants to be right there.
[00:07:25] That soothes her, that makes her feel better, that calms her down. So I know that if I want to do a little bit of self care and enjoy my time and still give my mom the soothing reassurance she needs, then I find a way for her to be able to do the things with me or be in my realm while I'm doing self care.
[00:07:51] It's not always easy, and it doesn't always work that I'm able to relax and do self care while she's sitting right there.
[00:08:04] And yet making that effort, for me, finding a way to combine the two, getting a little downtime, a little breather time, being able to be creative in whatever realm that is while my mom is sitting there means that I'm not as stressed.
[00:08:26] I know that she's okay. I know she's right there working on that puzzle. I know that she is in a space where she feels safe, she feels supported, she feels connected. She has all of her needs met in that moment because she's with me, she's safe. And okay.
[00:08:51] There have been a few times that I've gone out to the pottery barn, and she knows that when I am out there and I am working, my hands are covered in mud and muck. That's just what it is. You're working with clay and water. And I've told her that I cannot answer my phone. I just. I can't answer my phone if I'm out there. And there were a couple of times that.
[00:09:15] That she knew I was out there, and she would text me and say, would you like some apples?
[00:09:23] And I wouldn't respond because I wasn't looking at my phone because my hands were a mess, and I didn't want my phone covered in clay. And she would show up with apples and say, you didn't answer your text.
[00:09:40] You didn't answer your phone. And I didn't know if you wanted this. So I walked all the way across and I brought you apples, and she'll pop one in my mouth.
[00:09:51] I love my mom.
[00:09:54] This is quite the journey.
[00:09:57] My mom does not remember, apples make my lips go numb.
[00:10:03] Apples make my tongue go numb. It's not that I swell up or anything like that. It's not that bad of an allergy. But in the last year and a half, during her diagnosis, I have noticed that apples, peaches, cherries, those fruits that we eat, the skins, they end up making my lips go numb. So my mom just feeds me apples, and I can eat two or three before I really have much of a reaction, like two or three slices, but that's about it. So my mom comes out and she brings me, she apples. She feeds me apples because it makes her feel better.
[00:10:48] It helps her be okay and relax into the day. It lets her feel like she's needed and important because, oh, crystal's out there. She's probably not eating something. I need to make sure she has something to eat.
[00:11:03] She's only thinking about being kind and helpful.
[00:11:08] It is a loving thing that she is trying to do with me to make sure that I have what I need.
[00:11:17] I have the option to be upset and frustrated. I have the option to say, mom, I'm not eating that, remember, I can't eat that, remember, mom. That's just. And making her feel bad.
[00:11:28] But she's really trying to help. She's trying to self soothe in that moment.
[00:11:35] I think our loved ones try to self soothe, and when they can't, they get more agitated. And then we have a bigger problem. If I can encourage that self soothing, if I can give her things that help her be okay, then it's a little bit of a smoother journey for that day because that's how my teenager is feeling that day. They're okay playing a video game, sitting on the couch next to me. As long as I'm sitting on the couch next to me, they're not okay. If they're playing a video game and mom's not around, if they're playing a video game and they feel alone and there's a weird sound in the house and that freaks them out, and now they need somebody to know that it's all right.
[00:12:27] Lewy body is one of those where the emotions come out a lot.
[00:12:33] They cannot control those emotions. They are like a teenager in this. They get angry. They want to throw things, they want to hit things. They want to yell at you. They get anxious. Anxious is another side of anger. They can simply go from anxious and uncertain to lashing out because things are so scary and upsetting and they need to protect themselves. The range of emotion that our loved ones go through are all heightened because they no longer have the ability to think through what's real and what's not.
[00:13:10] They no longer have the ability to figure that out, release that, figure out how to release it in a healthy manner and move on with life. They genuinely seriously need us to teach them and help them, and they're not going to remember from time to time to time.
[00:13:36] And there could be a time when they are so violent, so angry that you will need to say, I can't do this anymore.
[00:13:48] I can't put myself if you have other family members in the house, I can't put my family at risk for this any longer because you are unable to soothe and deal with that physical outburst that comes if it is causing you harm. If they are in danger of causing themselves harm, it is time to look for a facility, a place, someone who is able to work through and deal with that.
[00:14:22] It's okay. You are not a failure.
[00:14:27] You have done a beautiful job taking care of your loved one to this point.
[00:14:32] You have given them a beautiful, safe space, a place where they could progress and feel loved and taken care of.
[00:14:43] You have succeeded in giving back to them.
[00:14:49] You have succeeded in loving and care for them. And I sincerely hope and pray that you can feel my truth in that for you.
[00:15:04] You can hold your head high knowing that you have done everything that you could.
[00:15:10] It's okay to ask for help.
[00:15:14] In fact, it's necessary to ask for help. It is better and safer for them as well as for you to be in a space that can navigate that and has the training to take care of them.
[00:15:33] Not totally where I expected to go today, but I do all of these off the cuff and wherever the spirit tells me that it is time to go. So I'm going to leave you there with Louis body and mindful care giving for today.
[00:15:46] I really do hope that you do the self care. I hope that you do something for you and remind yourself that you are an amazing human being. You are a gift and what you are doing is unbelievably challenging. My hats off to you and a hug to you and support to you.
[00:16:07] Take a break, take a breather, do something that soothes your own soul and come back next time for the next episode of Louis body and mind magic. Till then, take care.
