Episode Transcript
[00:00:11] Hello, and welcome back to Louis Body and mindful caregiving. I'm Crystal Djokowski, your host, and I'm really glad that you're here. I hope that you're doing okay. I hope that you're taking care of yourself. I hope that you're breathing and reminding yourself that you're not alone. I hope that you have found support, whether that be in friends or family or support groups or a talk doc, whatever that is, that can help you get through this, because you do not have to do it alone. You should not have to do it alone. This is big, and it's difficult, and there is no reason for you to struggle through without something.
[00:00:53] So I pray that you're finding that self care. What did I do for self care? Well, I went to some one acts. I love theater. My husband and I actually met in theater on the stage, and they were doing some one acts of a festival, and I laughed, and that was so great to be able to laugh and enjoy that time. In that moment, I got another massage, and I had coffee with a friend. And the crazy thing about the coffee with a friend is how the universe decided to show up for us in that moment. Because as I was talking with this friend at coffee, this gentleman was sitting over there, and he had AirPods in, and he was working on his computer. And then he stopped and he closed his computer, and he was putting everything away, and he was packing up to leave. But instead of leaving, he turns around and he said, so I heard you talking about Lewy body and dementia, and I am a neuropsychologist, and I'm one of the people that does the testing. So what you got going on?
[00:02:10] The reason that this was self care in that moment was the fact that I struggled getting the diagnosis because I worried that it was selfish. I worried that it would be more beneficial for me and not do much for my mom and that she would just decline, because now, well, I've got a death sentence, so why should I care about living anymore? I thought it would be more detrimental for her to know, and yet I felt strongly that we needed to know.
[00:02:43] So this guy starts asking questions, and I answer his questions, and he keeps diving deeper, and I'm like, well, yeah, I've already got a diagnosis for my mom.
[00:02:56] And he said, but he kept saying, yeah, that's textbook Louie body. Yeah, that's textbook Louis body. Oh, that's absolutely textbook Louis body. And the crazy thing about it, the beautiful thing about it, is the fact that as he said this, it was like I just got a third opinion for free because I'm talking about my mom's symptoms. And here is this doctor who does the testing, and he just randomly decides to join us and start talking about what he does for work, and he's just passionate about his work, and I ended up benefiting from it. This is the third or fourth time that I have spoken with someone and they have reconfirmed that my mom has Louis body.
[00:03:46] And that's a big deal because I didn't have to pay for it. Mom didn't have to pay for it. And Louie body is so ugly and so challenging because of its nature, just in and of its nature itself, that you kind of wish and hope that it's something else. You kind of wish and hope that it's a different form of dementia or that they have something else going on and it's not actually a Lewy body.
[00:04:18] When my aunt first heard that my mom had Lewy body, her response was, tell me that it's not true, and tell me you've gotten a second opinion, because I really don't want your mom to go through that. And I was like, sorry to tell you, we've already gone through so many tests, and we've ruled everything out before we actually found this one. So to have a third person or a fourth person say yeah.
[00:04:44] Was oddly buoying, because instead of feeling weighted down and like it was, yeah, we knew this, mom definitely has it. And here's another person who is confirming that she has it, and that's what we're dealing with.
[00:05:02] While simultaneously, it's sad and, like, that really sucks. It's also a yes. Okay. This is definitely what we're dealing with. They didn't contradict anything.
[00:05:13] So that was my self care was getting another unintentional confirmation of the diagnosis. So this particular episode today, I want to share personally what I'm going through and what I've been working through and trying to navigate, because I want you to know the personal side of it as much as the clinical side of it. And so one of my greatest concerns is losing myself.
[00:05:56] I know that a lot of people go into caregiving, and they're just not the same afterwards. Some people completely lose themselves, and it's almost like when the kids move out of the house, like they've now gone through school, and then they're moving out and going to college or whatever, and then you're left.
[00:06:17] What is life without the kids in the home? Who am I? What's my purpose? How am I beneficial to the world? Like, what do I need to do? And there becomes this personal, existential crisis of what do I do now? And I am keenly aware of this, and I am very stubborn and adamant that I not become one of those people.
[00:06:53] I am so intent on keeping my own identity because I think I'm afraid of having to find myself again after words like, if I lose myself in caring for her and then she's gone, what is my purpose? What is my value?
[00:07:20] I don't want to be there, not again.
[00:07:23] I don't want to go through that.
[00:07:26] So I'm a life coach, I'm a reverend, I'm a very spiritual person, and I'm constantly trying to balance things. Now, it's been a challenge because being a life coach and a minister means that I am constantly encouraging people to find self awareness and find strength and be true to their authentic selves. And being a caregiver and trying to work means that you kind of have this duality, because on the one hand, your definition is caregiver and your mind is throughout the day constantly thinking about, are they okay? Do they need anything? How are they reacting to this? Do they need that?
[00:08:11] Did they take care of themselves, hygienic wise? Do I need to change this? Do I need to change that? You're constantly thinking about how to help them. And so there's that part of you, but then there's also this other part of you over here that is trying to live your life. And those two parts can be extremely difficult. I put my emotions on a shelf, in a box on a shelf when I go work with my mom. And I have to do that because if she notices tiredness, if she notices a little bit of irritation or frustration, she automatically thinks that I'm upset with her. She's automatically insecure about her being a problem for me. So I have to put those on the shelf. But then me that's living through life picks up those emotions and I have this extra emotion, like, what do I do with that? Because I might be irritable, I might be frustrated, I might be. And I feel, honestly, I feel as though sometimes I'm negating the reality of my emotions, that I'm stuffing them because I don't allow myself to fully feel them.
[00:09:36] Sometimes I'm afraid of fully letting myself feel them because I'm afraid that I won't stop, that I will just cry and rage and be all over the place. And that's not where I want to be. That's not who I want to be. I want to be okay.
[00:09:56] And yet I also recognize the value and the importance of allowing those emotions to be expressed so that they don't get stuck in my system. Which is why I've signed up for getting a massage twice a month, because I know that I need to move that energy through. Having been trained as a massage therapist, I have seen people who have physical ailments that have manifested from those emotions getting stuck in different parts of their bodies, and I don't want to be there.
[00:10:28] I was talking with a loved one, a dear loved one, the other day, and they asked me how I was getting through it. And I said, the thing is that all of the life experiences that I've had up to this point have been like a training ground and given me the tools that I need to be able to take care of her and not lose myself.
[00:10:55] That's still a challenging road to walk. It's a challenging.
[00:11:05] Sometimes it feels impossible to be able to walk the path of loving on her, taking care of her, and also loving on myself and taking care of myself.
[00:11:18] It seems we're in a new realm with her.
[00:11:25] I told you a couple of weeks ago about the trip that we took with her to Switzerland and all of the stress leading up to it, and a little bit of upset in the middle of it, and then coming home and the release that happened that I had to let it go. But I've noticed something new with her. She has a very difficult time saying thank you to me, acknowledging that I'm helping her out or asking kindly for things. Now, she used to always, would you please, could you help me with this?
[00:12:09] When would you be able to help me with that? And thank you and whatnot. She would do that all the time. But now I was driving away from the house and I got a text from her, well, when are you going to do this?
[00:12:23] And I was going to the craft store, and she said, that's great. When are you going to take me to do this?
[00:12:31] And there's not a thank you afterwards. And it's not a, can you please help me? It's shifted. And I know that this is part of Louie body, but then I also question, is there something else? My husband and I talked about it, and he was saying that he was reminding me that her executive function and her reasoning is not all there, which means that it's a stressful situation. She knows that she needs to go to the eye doctor, and she knows she needs to make the appointment, and she needs me to make that appointment for her to make sure that she actually gets there. And it works with my schedule.
[00:13:09] And so instead of being able to, hey, would you have time? Can we please set up a time? It's. I'm stressed. I need this to happen, and you have to do it because I'm her caregiver.
[00:13:23] I remind myself that it's her executive function. I remind myself that it's the Louie body that has shifted that. And I am in the caregiver role more than the daughter role that I used to be in.
[00:13:38] But that's still hard, and it's still frustrating. And I have to put that part of me on a shelf and not be angry with her for not being kinder about how she's handling things. And I keep coming back to the reminder in the savvy caregiver course of, if you're treating them like they have a normal brain, then stop it, okay? I want to stop it. And yet I'm so frustrated because when my brother was here, he and his kids, they would walk her home. They would get some water for her. They would fill up her plate so that she didn't have to get up and be off kilter, going to the counter, the kitchen to fill up her plate. And she would thank them. She was constantly thanking them in gratitude, and I would do something for her, and it was, that's nice.
[00:14:30] I wouldn't get a thank you. She used to correct me all the time, and she used to say, crystal, I would say, hey, mom, would you do this? And she'd say please.
[00:14:40] She would remind me that I needed to say please. She reminded me that I needed to say thank you. If I would ask Jay to do something, my husband and I didn't say please after it, and my mom heard it, then she would say please to remind me that I needed to say please. When I asked my husband to do something for me, she was a stickler on the please and thank you, and now she can't say it to me, which is frustrating.
[00:15:15] And I know that it's the disease. I know that it's part of just the dynamics that are there. And yet I could lose myself in my bitterness and my anger and my frustration with the fact that she can't do that anymore with me. And it's with me because of the position that I'm in.
[00:15:39] I really want to honor her, really want to support her.
[00:15:52] There are moments where I'm really frustrated because I am losing myself.
[00:16:01] But even as I say those words, I am the minister. Part of me says, do not create that reality. You say, I am struggling with or I am fighting to keep myself.
[00:16:22] I am working on maintaining my own truth and reality and honoring both her and me in that moment.
[00:16:33] The duality challenge, to be so weighted down by the challenge that her and I are going through by this ugly, disease Louie body and have that weight and then turn around and give an uplifting, inspiring talk.
[00:16:59] How do you do that? And yet, I have to do that.
[00:17:03] I recognize that I have to continue doing things for me that are me to keep me in existence and to help process through all of those emotions.
[00:17:20] I could be angry and frustrated.
[00:17:23] And yet, if I allow that minister part of me to come through, then I'm able to look at it and say, I am an instrument through which source my higher power, God, whatever it is that is your higher power, can operate.
[00:17:41] So, yes, there will be challenging moments.
[00:17:45] Challenging moments through which I will be given an opportunity to learn and grow.
[00:17:51] And I will be able to take those moments and create something even better, something more beautiful. I will be able to apply it to my teachings on compassion and understanding and self ownership and awareness.
[00:18:12] Sometimes I really.
[00:18:16] When I was younger, I would remember my mom would yell at us kids because we had done something wrong, and she would be really angry and just yelling, yelling, yelling, yelling. And then the phone would rang, and when the phone would rang, she'd go, hello? And she was so, like, fake because we saw her angry, and then we saw her this way.
[00:18:40] And right now, I struggle with myself in doing that. I'm like, okay, so I'm weighted and I'm struggling over here, but then over here, I'm inspired and uplifting.
[00:18:55] And I used to judge my mom in that. I used to judge the facade that she was putting forward. And I now am in this space where I have to question myself, is this a facade that I'm putting forward, or am I being authentically me?
[00:19:14] I pray that I'm being authentically me?
[00:19:18] I believe that I am being authentically me. When I check in with my higher power, when I check in with my guides, I believe that I am being true to the authentic being within.
[00:19:40] And I'm juggling that, and it's hard.
[00:19:44] I went to my talk doc, and I asked her about it, and I was talking to her about the difficulty of the duality of it, and I was very grateful for her response, which is why I tell people all the time, get a talk doc. Get a good one. Get a really good one. One who is versed in what you're dealing with.
[00:20:07] I said, I'm really frustrated because of this and this the duality of it. And her response to me was, Crystal, you have to think about the difference. When somebody says, how are you? There's a word missing there.
[00:20:23] How are you? Means that you have a choice. You can answer them on how are you feeling?
[00:20:30] Or how are you doing?
[00:20:35] And I was like, okay. Why is that different?
[00:20:37] Fact of the matter is how I'm feeling is a jumbled mess. And sometimes I am okay and I am on top of it. And I'd say more times than not, I'm on top of it and I am really working through it and I'm doing well.
[00:20:51] But there's also that undercurrent of stress, the undercurrent of grief, because this is the long goodbye, the frustration, the disappointment, challenges of juggling the things that need to be done.
[00:21:08] So emotionally, I might be a mess, and there are some people that I might be able to share that emotional mess with.
[00:21:16] When someone asks me, how am I doing? Or how am I? How are you? I get to choose, am I going to tell them about that jumbled mass or am I going to tell them about what I'm doing?
[00:21:27] And if I pause to tell them how I'm doing, then I get to say, you know, taking care of myself.
[00:21:37] I'm getting a massage twice a month and I'm seeking out joy and I'm doing self care in this way. And I'm meeting with friends and I went for a drive and I get to tell them what I'm doing to take care of myself. And when I share what I'm doing, I'm reading a new book, which means that I get to escape from my own reality for a little bit and dive into the reality that somebody else has created.
[00:22:12] When I express to somebody else what I'm doing, the beautiful thing about it is that it helps me remind myself, oh, yeah, I'm doing all of these things. These are me and these are supporting and sustaining me and these are allowing me to live my life. I have intentionally set it up so that my mom can be as independent as possible for as long as possible.
[00:22:45] She is in that house. She is 100ft out my back door. I do not expect myself to go visit her every single day. I do not expect myself to go spend hours upon hours with her. I am working to make it feel like she has as much autonomy and independence as possible without me hovering over her. And yet, that autonomy that I'm granting to her also grants me autonomy because then I can go do all of these other things.
[00:23:23] I'm constantly juggling this. I'm constantly working with it. I am constantly talking to friends about where they're at and how they feel and what's going on for them. And they are also asking me what's going on for me now. Some of them are great, and they want to know about my mom, and they want to know the reality of my state of being in this moment.
[00:23:49] And it helps me process through knowing that there's somebody that I can talk to. It doesn't mean that they have to take any of my stuff on in any way, shape or form. And yet, speaking with them means that I can be aware of my words and I can create my reality knowing that I am honoring who I am and refusing to give that person up.
[00:24:14] I'm refusing to put my true self on a shelf in honor of simply being a caretaker.
[00:24:26] It's not easy.
[00:24:29] There are times when I do lose myself because she has fallen or declined in some way or another, and I really need to be present. And it is overwhelming and exhausting in that moment. And I do lose myself. I have to cancel clients or a speaking engagement, whatever that is.
[00:24:47] Then there are moments where she's doing really well.
[00:24:52] Thanks to the nature of this disease, she's doing really well. And I am able to step back and feed into who am I? Why do I exist? I believe that I exist on this Earth, on this planet, in this body right now, so that I can help love and nourish other people, so that I can help them feel unconditional love, and so that I can bring a little light and joy in life.
[00:25:26] As long as I'm doing that, I feel my cup is a little more full because I've brightened someone's day, because I've made someone smile. And that's the greatest thing, because that's the one thing you can give away, and it comes right back to you and it didn't cost you a thing you can give away. Smile.
[00:25:48] You can laugh and joke with a friend, be authentic to you. This is a hard road. But the more that you nurture yourself, I think the easier that it might be. You don't get lost in the weight. And I could be wrong. It could be that six months down the road, this will be a very different me talking to you, saying, oh, my gosh. But right now, I'm hoping that fostering who I want to be and fostering how I want to be and where I want to go in life and what I want to do, fostering the true path of my heart while still being a caregiver means that down the road, when it is harder with her, I still have the foundation and the truth that I've already set forth, which is I'm doing self care. I'm doing things that I love. I am making sure that I bring a little bit of joy, those pin pricks of light into my life so that when it's the darkest night, you can still see pretty dang well because the stars and the moon are so bright that they light your way.
[00:27:06] You are amazing.
[00:27:09] Please recognize what a gift you are to that loved one that you are helping to take care of.
[00:27:18] And in being such a beautiful gift, please make sure that you give to yourself.
[00:27:26] Nurture yourself, fuel yourself to make sure that you are not lost. There is no reason for you to be completely lost. There are resources you can pull people in. While you may not be able to tell the definite direction and path of this disease because it is so scatty wampus, you can still acknowledge and put some kind of contingency plan in as she declines. What are the next things that are most likely for you to need to bring in to help you? What are your hard lines? I won't give my mom insulin every single day. I'm not going to make sure if she needs food, help feeding herself or making her own food. I am bringing someone in. What are your boundaries to ensure that you can still be that loving caregiver and not completely lose yourself to the task?
[00:28:29] Thank you for being here and sharing this time with me. Thank you for choosing in for this moment.
[00:28:36] I know it's a hard road because I'm walking it right now.
[00:28:42] Give yourself love because I send it to you as well. I send you hope.
[00:28:47] I send you encouragement and support. I really pray that you lift yourself up a little bit and that this episode of Louis Body and mindful caregiving has been at least a little bit uplifting and insightful. You're are amazing. You're a gift. I pray you take care and I'll see you next week. Here's.
