Episode Transcript
Speaker 1 00:00:10 Hello and welcome back to Lewy Body and Mindful Caregiving. I'm Crystal Dukowski, your host. I always leave encouraging you to do a little bit of self-care, and so what self-care did I do? This week I did a little pottery and I hosted, uh, an event for end of life. It's called a death cafe, d e a t h, cafe. And it was wonderful to sit with other people who are also struggling with issues and, and recognize that it's okay to talk about death. It's not morbid or anything. It's actually beneficial and helpful to talk about it with other people. So that's what I did for self-care. Oh, and I ate a really delicious lunch. So, um, <laugh>, um, I hope that you had some great self-care and, um, maybe some unique things that people haven't thought about that are great options and opportunities. Maybe you went running, maybe you painted, maybe you did service somewhere, because that is what fills your cup. I don't care. I just hope that you did it for you this week. I want to talk about the thoughts that we have that we then think we're an asshole for having. You are not an asshole. It's okay.
Speaker 1 00:01:37 Dementia, Alzheimer's, these life altering diseases, cancer, the things that we end up having to deal with and face and work through, whether you are the person dealing with it and angry and frustrated that your body can no longer react the way that you want it to, or you're trapped in your mind because you can't function. Or maybe your body works, but your mind doesn't. You are like, somehow this body, mentally, physically, energetically is failing. And I'm sure there is anger and fear in trying to understand what, why, why you, why do I have to let people in? That's humiliating. Why do I have to ask people for help? My dignity is being lost.
Speaker 1 00:02:53 I can't drive anymore. That sucks. It's one of the biggest ones for my mom. Her freedom, she feels like has been totally pulled away from her. And she is so sad that she can't just go get a burger or pick out her own groceries without the help of someone else. If I take her somewhere, she has to lean on me. And there's this part of her that hates it because there was a time that her body worked just fine, and she could walk into that grocery store without any support and she could walk around and fill her arms up instead of using a basket and go check out. There was a time that she could drive across from Utah to Wyoming and not have a problem.
Speaker 1 00:03:45 There was a time that she could drive somewhere that she didn't know where she was going, and she could find the map <laugh> from the phone book, and she would just go. And now she can't do that. Now. She can barely read a book. She can barely play a game on the computer. She has a hard time knitting for more than a little bit because her hands and her eyes just don't work. She's sad. She's ashamed because she has to ask for help. She's depressed because she can't function the way she wants to. She'll say things like, I just wish this was over and I wouldn't wake up tomorrow, but that makes me a bad person because I'm wishing to die. She's very religious, so she would never commit suicide, and I don't think that she would even do assisted end of life, but she has those thoughts and then she feels bad for having those thoughts. There's no reason to feel bad. I think it's a real thought and it's very valid. And I think that we should own that fact as a caregiver.
Speaker 1 00:05:16 There have been times, you know, I'm, I'm a life coach. I've been a life coach and a massage therapist for years, and I keep trying to understand what lessons I'm learning in this and how I can put a positive twist on it and how I can find the light in this heaviness. And it's frustrating. When we went to the neurologist and we were doing the tests to find out what this hallucination, vis, visual disturbance was, and I already had a, a suspicion that it was probably some form of dementia. I thought, God, I hope this goes fast. And then I felt like an absolutely horrible daughter for thinking, I want my mom to die.
Speaker 1 00:06:13 But that's real. That's normal. That's a natural because I don't want her to suffer. I don't want to have to watch her suffer. I don't want to be that caregiver by her side as that happens. And yet I do want to be that person that helps her be okay, but lets her know she's safe as she walks down this ugly path, those thoughts that we think are not evil. They do not make us evil. They do not make us bad people. They make us real because we're acknowledging the ugliness of this situation. I had spent weeks, multiple weeks trying to figure out a problem of mom's, a side effect symptom that was going on, and I was so tired and I was so frustrated. And my mom came over and she just started to talk to me and she was like, honey, you look so tired. Are you okay? And I was like, yeah, mom, I just, I've just been working with the doctors and the pharmacists and trying to get what you need because I really want to make sure that you're okay. And she said, well, is there anything that I can do for you? And my brain immediately thought you can die.
Speaker 1 00:08:11 And then I felt horrible for a split second because I knew that once she passes, all of this will be behind me that I won't stress out about how she's doing and what she needs. And if I'm achieving everything that needs to be done so that she can be okay, there have been times that I've been afraid to share with friends or my siblings some of the darker thoughts that I've had because it feels like somehow I'm failing in being a strong, capable caregiver. That if I have one of those thoughts about wishing that it was over that I'm just a horrible daughter.
Speaker 1 00:09:23 But it's not true on both sides of this coin. It's ugly and it's hard and it's difficult. And I don't think that we are going to get through it if we cannot at least admit that it's ugly and hard and that we have those thoughts. And I think that it's really important that we get them out and express them. Whether you are in a support group or you are with a counselor, or you journal, however it is, maybe you need some screaming <laugh> and you just need to go out into a tribal yell, which I have done. We were having some landscaping done, and I had gotten home from a doctor's appointment with my mom, and it was really upsetting. And I went into the house and my husband looked at me and he said, are you okay? And I said, I just wanna scream.
Speaker 1 00:10:16 And he said, well, then let's do it. So we went into the bedroom and we both just yelled and screamed as loud as we could. And I was yelling about, you're such an asshole, and you're this and you're that. And just angry at the medical system and at the illness that my mom has. When we were done, I felt so good <laugh>, and I hugged my husband and I cried for a minute because I needed to finish that release. And then I walked out of my house. And when I walked out of my house and out my back door, there were five landscapers standing there working on something <laugh>. And they heard, you could tell they had heard everything because they looked at me and then they were hurried and down back to work because they didn't want to give away that they had heard me screaming, <laugh> at the top of my lungs, oops, <laugh> yet. And yet I felt so much better and was able to move forward and past it. And I was moving that emotion through me. And when I have those thoughts that I think, whew, you're an asshole. I work to change that and say, no, I'm not an asshole. I am human. And it is very human to have that kind of a thought in this kind of situation. Do I still love my mom? Yes.
Speaker 1 00:11:49 Do I want her to be okay? Yes. Do I wish, wish her harm? No at all. Do I still wish that this would be merciful and move swiftly? Yes. And it's okay to say that it's okay to want it to end for both you and for them. Understanding that it is just as rough for them when they are belligerent, when they are stubborn, when they are arguing with you, when they accuse you of stealing from them or being an imposter, that you are absolutely not who you are. When they start wandering around at night and leaving the house, it's the disease, not them. If you're treating them like a normal person with a normal brain, stop it. They're not. They cannot help it. And it's okay to be frustrated. It's okay to be angry at the disease and what it's doing to you or your loved one.
Speaker 1 00:12:58 Those thoughts are normal, and I mean that. So I'm gonna say it again. Those thoughts are normal. It's okay. You are not a bad person. When you are frustrated and you have a thought that wants to lash out or you do lash out, that's okay. You're human. There's no way that you're going to be perfect through this whole thing. The stress, the emotional weight, the mental strain that goes into caring for yourself, your job, your family, your loved one. It's a lot. It can be too much. It's okay to be angry and frustrated. It's okay to vent. It's okay to have a thought about wishing things would go faster or that they would pass on already, or that you didn't have to do this and somebody else could step in. It's okay. Be a little kinder to yourself and recognize what you are putting in, what you are giving to this situation.
Speaker 1 00:14:13 Be kinder to yourself so that you can be compassionate for them. Because if you're not nice to yourself and you're not saying, Hey, it's okay to struggle to yourself and soothing yourself, then when you go to them and they're struggling, are you going to be able to say it's okay that you're struggling? How can you tell yourself that it's not okay to struggle, but tell them that it is. You're talking out both sides of your mouth and you're not in alignment. If it's okay for them to struggle, it's okay for you to struggle, period. Flat out. That's just the way it is expecting it to be any other way is just bullshit. Self care, self love, acknowledging that this is a really crappy situation that you are in. Whether you have the disease or you're with somebody and caring for somebody who has the disease, it's really crappy.
Speaker 1 00:15:17 Absolutely horrible. Self-care. Self-care, self-care. Recognize that it's okay. It's okay to be angry. It's okay to be upset. It's okay to be emotional, however that looks. And another thing on the days that you only have 40%, if you give 40%, you still gave a hundred percent. Whether you're the person with it or the person giving care to someone with it. If you only have 40% and that's what you gave, you gave it all, you put it all on the table. I'm proud of you. Thank you for being here. Thank you for listening. Give yourself even more compassion and understanding and a little bit of extra self-care. And I hope you come back for the next episode of Lewy Body and Mindful Caregiving.
