28: The Paradox of Self-Care in Lewy Body Dementia Caregiving

February 01, 2024 00:12:17
28: The Paradox of Self-Care in Lewy Body Dementia Caregiving
Lewy Body and Mindful Caregiving
28: The Paradox of Self-Care in Lewy Body Dementia Caregiving

Feb 01 2024 | 00:12:17

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Show Notes

In this episode of our podcast, we delve deep into the essential topic of self-care while navigating the challenges of Lewy Body Dementia caregiving. As a caregiver, I share my personal experiences, discussing the paradoxes of self-care and the importance of mindfulness, intention, and personal needs. Aiming to be both informative and supportive, this episode aims to provide you with practical strategies and emotional comfort when confronting Lewy Body Dementia.

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FIRST TIME HERE? Hey, there! I’m Krystal Jakosky - a teacher, writer, and transformational life coach based in CO. I release weekly podcasts about self-care, hard truths, journaling, meditation, and radical self-ownership. All are wholeheartedly welcome here. 

LET’S CONNECT! Visit my website and visit me on InstagramFacebook, YouTube!

Thank you so much for all the support throughout the years! If you love what we are doing here with the podcast, you can make a one time donation to support the Lewy Body and Mindfule Caregiving podcast. 

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Episode Transcript

[00:00:10] Welcome back to Louis Body and mindful caregiving. I'm Crystal Jaikowski, your host, and I'm very grateful that you are joining me. And here I hope that you are finding the gems that you need to be able to navigate through this challenging, challenging disease as a loved one or a caregiver. This week, I want to talk about the paradox of self care for a caregiver. And I always start out with self care. So what did I do for self care? I actually went and did something super physical. I went and I played pickleball, and I made myself get out and move function. [00:00:44] And that really feeds into this paradox that I want to share with you. Last week, I talked about the caregiver arc and how you go through this kind of manic thing where you're taking in all of this information, and then you go through this depressive area where it's just like, life is so difficult and you're kind of fighting with grief and fighting with yourself and just so drained in life, and then you finally get to this point where you're feeling okay in each of those spaces. You need self care. It is so paramount and important, I cannot even tell you. I mean, it is something that I am super passionate about, and I jump on a soapbox every time it comes around. And so I'm going to try not to be too preachy or soapbox at you, but I also really want you to understand how desperately important it is and how valuable it will be to you as a caregiver. [00:01:47] My definition of self care is an intentional and conscious act aimed at taking care of your own needs. [00:02:01] Conscious and intentional act aimed at taking care of your own needs. Now, I want you to think about this, because many times we do things and we just go and we do it, and then we think, well, why don't I feel better? Because I did self care. I went for a run. I did this, I did that. I should feel better. Not necessarily. Did you actually say that this is for self care? Did you go get a pedicure and at the end of it, instead of feeling refreshed, like, oh, I just pampered myself, you're like, I'm so annoyed that I just wasted an hour and I could have been working or I could have done this or this, or maybe you went and got a pedicure and you worked the entire time, and it wasn't actually self care because you were working. You didn't set that intention. [00:02:43] You did not consciously say, I am doing this for myself. I am setting aside this time to ensure that I fill my own cup. [00:02:53] I can't tell you how many times somebody will tell me, like, well, I sat down on the couch and I read a book, and I loved reading the book, but when I was done, I just felt horrible because I'd wasted the entire day. Okay, did you set an intention that it was okay for you to spend a day reading a book? No, I didn't. Then they'll go home, and the next time they read a book, they're like, oh, man, it felt so good because I acknowledged that I was going to take a day and I was going to give that to myself. [00:03:24] I went and got a pedicure and I told myself, I'm giving myself this hour. I'm not going to work. I'm not going to anything. I'm just going to pamper me for this moment. Setting that intention means that they walk away from it, they feel better, exercise. Hey, you know what? I am doing this exercise for my self care. Cooking a meal, sanding, whatever it is, whatever activity it is that helps you feel better. Self care is not necessarily only chocolates and bubble baths and pedicures and stuff like that. Self care is literally anything that helps fill your cup, anything that helps you feel better. It might be spending time with friends. It might be going for a run, it might be cooking. I mean, there are a myriad of things. And the first thing I encourage you to do is sit down and write down all of the hobies that you used to love, all of the things that you really enjoy doing, all of the things that might bring a smile to your face and make you happy. [00:04:25] And by listing them the next time, you're like, what am I going to do for self care? I'm feeling down. You can go back to that list and say, oh, my gosh, yeah, I love this. This is fantastic. I forgot about that. I'm going to go do that. I'm going to go do that. And I'm setting the intention that that's self care because I'm going to go do that. [00:04:44] So now that I've given you the foundation and the groundwork for it, paradox of self care is this. [00:04:51] Sometimes we think that we need one thing for self care, and actually we need a completely different thing for self care. [00:05:01] Let me explain. [00:05:03] When you have chronic fatigue, oftentimes the prescription for chronic fatigue is to do some physical activity. It sounds very contradictory because. [00:05:18] But I have fatigue and you want me to go for a walk? Are you kidding me? But it actually works. It sounds counterintuitive. It is a paradox and yet it actually works. By getting up and moving a little bit, you do have a little bit more energy, a little bit more ability to function for the day. Now when you are in your manic, got to go, got to do, you might think that for self care you need to do something very big, something outward. [00:05:52] Perhaps taking a moment to slow down and breathe and giving yourself a break is actually what will fuel you more than achieving another something. [00:06:10] When you are feeling depressed and struggling through the day and you think, I just need another break, but you've already had several breaks and you just keep thinking, I need more peace and you just keep getting more tired and more down. Perhaps the thing you need is something upbeat and energetic. [00:06:36] I realized this. I've realized this multiple times throughout my life. [00:06:41] But in this caregiving journey of mine, I realized it most in my depressive state. I wish that I had paid attention to it in my manic part of my caregiver's arc because I think it would have helped me a lot. [00:06:58] But in the lower part where I was just down and struggling and overwhelmed, I kept sitting on the just. My brain is just, I just need to sit here. I'm going to scroll Facebook or I'm going to do social media or I'm just going to play another game. [00:07:19] I would spend an hour at a time just, oh, I just need some more downtime. I just can't handle it. I need more downtime. [00:07:27] But that was contributing to the depressive part of my arc. Instead of getting myself moving now, I had no energy. I really did not want to have energy. I just wanted to be a bump on a log. And yet if I applied the chronic fatigue prescription to it, then getting out and playing pickleball, being around other people and reminding myself that there is joy in life to be had and that I could be out and about and functioning and it was actually kind of fun and that my body felt better and my brain felt better because I had gone and done something more upbeat. Oh, that was really good. [00:08:11] One day I was like, you know what, I'm down. I want soothing music. And instead of soothing music I put on like upbeat, get it done. Like very move kind of music. It was music that I was excited to kind of sing to and bounce around to. It was like the 80s aerobic functioning music. Now I was down and struggling but I played upbeat music. And you know what? I felt better. [00:08:41] I felt better because I did the opposite of what I thought I needed. [00:08:47] I decided to play devil's advocate and do something completely off the cuff. [00:08:59] It's amazing when you pause and look at it. If your regular self care is not working, if the self care that is your go to is no longer a go to for you because it doesn't seem to fill your cup, then it's time to switch it up. And that's where your list will come in. This is where your list will really be helpful, beneficial, supportive. Because while this one doesn't work, maybe this one does, and it will help trigger ideas for you to play around with and experiment. [00:09:38] You get to have fun with it. But always set that intention. Always, always set that intention. Because when I would play upbeat music when I was down or my husband would put it on for me, it would irritate me. It would really bug me because I was like, I got no energy and you're playing that crap. [00:10:06] But if I set the intention and said, this is going to help me out, I know this is going to help me out. Singing along with some of my favorite songs, that's going to be exactly what I need. And I tell you, because I set the intention, I wasn't irritated or cranky about it. I was actually able to embrace it and my mood was much, much better. [00:10:27] It is so important for you to take care of yourself as a caregiver. Constantly giving to other people, whether that's your loved one who has a terminal diagnosis, or your kids or the job or whatever that is externally that you are constantly giving and doing. [00:10:47] You need to pour back into yourself. You need to help yourself out. And if it's not something like meditating and Zen, because it's just not working, then maybe something more physical and active and uplifting, like energetic, is really going to be the ticket for you. Write the list. Check it out. Set the intention. A conscious and intentional act aimed at taking care of your own needs. You're putting yourself higher on that priority list, and it's absolutely beautiful. I encourage you to do it. I encourage you to play around with it and work with it. Find what works for you. And when it stops working, then look at the other side and find something else that does. Self care. Self care. Self care. Thanks for listening. Thanks for being here this week. I am so grateful that you listen and that you are a part of my journey that I get to share with you the things that have worked for me on this upheaval of life, this challenge that I have been blessed to experience. [00:11:56] I hope that you have gems and nuggets of wisdom that you get to take along in your life. That really get to benefit and support you as well. [00:12:05] Until next week. Take care.

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