Episode Transcript
Welcome back to the next installment of Lewy Body and Mindful Caregiving. Today, I wanna talk about your most valuable resource. And I'm talking about this before I even dive into my journey because it is unbelievably important. It is ridiculously important. The first thing that I learned, the first thing that I recognized and understood when I found out that my mom had Lewy Body and that I needed to be her caregiver, was that I was going to have to take care of myself. If I don't take care of me, there will be nothing left for me to take care of her. I literally have to give as much to myself, if not a little more, than I do to her. Otherwise, I will just be draining my pot, and my relationship with my mother will become one of resentment and frustration instead of one of love and caring and support.
So I want you to think about this for a minute. What I have learned is that we have four bodies. We have our spiritual body, which is our connection to our higher power. We have our mental body, which is our minds and what we think throughout the day. We have our physical body, which is how we experience life around us. And then we have our emotions that let us know what's going on. And if we need to adjust in some way, shape, or form. I don't say that emotions are positive or negative. I say that they are simply emotions because it's not the emotion that's bad; it's what we do with it. So you can be angry, and if you lash out and hurt somebody, that's negative, but you can be angry and say, why am I angry? And what am I doing with this? And you can make it very positive and learn from that.
Now, the reason I talk about the four bodies is the fact that when you are being a caregiver, you only have so much energy to go around. And yes, there's physical energy, there is activity, there is going and doing. If your person is further along in the disease and you are doing more lifting and things like cooking and changing the bed and helping them to and from their bathroom, whatever that is, you are expending physical energy. The thing is, though, with Lewy Body dementia, I think with any long-term terminal caregiving thing, there is more than just physical energy. And I learned this the hard way. I would tell myself, well, I'm not doing that much physically, so I shouldn't be so tired. Why am I struggling? I'm so exhausted all the time. I was not taking into account the emotional and mental energy that I was putting into my mom time. It's value. You only have so much time in this world. Money, you can make more money, you work harder, you figure it out. You can make more money, but your energy with which to actively participate in life, you cannot make more.
My mom, I would go to her, and I would ask her, how are you doing? And what's going on, and how can I help you? And she would start to tell me, well, I'm feeling this, or I'm feeling that. It wasn't just that she was answering my questions; it was, oh, so today her hallucinations are worse. Is that because of the medication? Is that because she didn't sleep well last night? She's really shaky today. Is that a medication thing or is that from not sleeping? Is there something else going on that I'm not aware of? My brain was constantly asking whenever my mom would talk to me about her digestion or bowel movements or the thoughts that were going on in her head or the dreams, it was never just listening about a dream. It was okay. I happen to know that dreams are the way that our body processes the emotions and experiences that we had or have coming up.
So if my mom is having a stress dream about birthing a ton of frogs and she doesn't know what to do with them, and when she leaves the room and comes back, there are even more frogs and it's just overwhelming and she wants to cry. I know that she's processing stress. What is she stressed about and how can I help her change that? Because she tells me about her dream. But in processing what my mom is going through and understanding what's really happening, I am constantly thinking. I am constantly questioning and I'm using tons of mental energy.
So think about constantly doing a puzzle. Think about the idea of like those exit games where you have to solve this issue or that issue and you're, just stuck trying to figure out what the next step is and how to go. And if you were always in that situation, you're gonna be exhausted. Your brain is going to be shutting down. And when your brain starts to shut down physically, you shut down too, and you become a little depressed. You may lose interest in things. You don't wanna really function and do anything because you are mentally spent. Well, that's your energy. You don't have energy to do anything else. And why don't you have energy to do anything else? Because your mental energy is zapping all of the other energy in your body, your emotional energy, trying to figure out how do you help them recognizing that they are losing their mind and they have no control over it. And it is so upsetting and so frustrating for them.
There's nothing you can do. There's nothing you can say. There's no way you can make it better. And while you may be frustrated with their thoughts and their actions, think about how frustrated they are. They used to be so smart. They used to be so funny. They used to be so active. But now it's hard to remember the neighbor's name. It's hard to remember the name of that white fluffy thing in the sky. They trip over their words. They have a little difficulty swallowing and they choke a little bit. Here you are thinking about how frustrating it is as the caregiver and that poor person of yours is struggling because they know it's hard for you, and yet they have no control over it. Their body has decided to create protein deposits in their brain, which is totally messing with every bit of their functioning.
Your energy is paramount. Self-care is paramount. You have to give yourself a break. You have to find people around you that can help spell you off. You have to seek out things that fill your cup. And I'm not talking massages and pedicures and things like that. I believe that self-care is any intentional act focused on meeting your own needs. Now, I'm not. I'm not a runner. Never have been, never will be. However, there's somebody else out there running, getting out there pounding the pavement, being alone with their breath and nature. It's exactly what makes them feel so much better and fills their cup. Somebody else may be in the wood shop and just sanding, enjoying the rhythm that is there. Cooking, chopping vegetables, prepping food for physical nourishment, doing a puzzle. My recommendation is that you sit back and you write down a list of all of the things that you enjoy doing, reading a book, creating in some way, shape, or form, having coffee or tea with a friend, doesn't matter what it is, list everything, even weird things does not matter.
And then the next time that you are feeling drained and you need a little boost, you can look at that list and say, which one of these things will bring me a little bit of joy right now? It might be that you need a bubble bath. It might be that you just need a 20-minute shower underneath the hot scalding water, just rinsing off the stress of the day. It could be that you wanna treat yourself to a banana split or a coloring page or a day in, you know, like an hour in the gym.
Self-care is going to be unbelievably important. The most important thing, period, is self-care. Your self-care will build your resilience and will build your ability to take care of yourself in a more kind, compassionate, loving way. Without that, you will fall into a spiral. You will burn out. And then who is left to take care of your person? Lewy Body is draining. It is draining for you. It is draining for your loved one. Fill your cup. And then I want you to come back to this episode time and time again because there are going to be times when you say, gosh, I did not accomplish anything today. And that's when you're gonna think, maybe not physically, but mentally, what did I do today on their behalf? Emotionally? What did I do today on their behalf? When you start looking at the other energy that you have expended over the day, and maybe it's not even on their behalf, maybe you have that person, and you've got a job, and you've got other family, and you've got other responsibilities. And so all of that adds up. And again, if you're not taking care of yourself, how can you be present for all of those other people?
You have to take care of you first and foremost, and then you can move to the next person. I cannot stress it enough. You can tell I'm very passionate about it and I'm passionate about it because I have been living this and people around me have been reminding me, Krystal, you don't take a break, Krystal. I can see that you're really tired. Even my mom, every now and then, she'll say, Hey, Krystal, you just look down. Are you okay? And the thing with Lewy Body is that they are ridiculously perceptive. So she'll say, are you okay? And if I say no and lie to her, then she thinks that I'm no longer a reliable resource, and she won't talk to me anymore. So I have to be honest with my mom;
“Yeah, I'm tired. I didn't sleep so well last night, and I'm just struggling a little bit today. But I promise you I'll be all right.”
She'll say, “Well, is there anything I can do for you?”
“I'm just gonna sit with you for a little while, Mom. 'cause then I can hide away while I'm sitting with you. And maybe that'll give me a little bit of a break.”
She knows if I'm frustrated with her, she knows if I'm frustrated with her situation because she's so intuitive, and she's intuitive because her world is crashing in; it is getting so much smaller. And if that world is really small, it's really easy to tune in intuitively to the emotions of anybody who comes into that world. And as her caregiver, we are so close with each other; we are so right there that there is no way that she will not pick up on the energy that I'm oozing out, whether I'm conscious of it or not.
So all of that ranting and raving, that whole passionate tirade boils down to self-care. Self-care, self-care, self-care, your energy. You have to manage. You have to recognize that your energy is your most valuable resource. Where do you want to spend that? Is tonight a night that it's better for some fast food and some DoorDash than actually cooking something because you don't have the energy to cook? And you'd rather spend what little time you have left on self-care? What can you give to yourself? How can you help yourself?
Thanks for listening, and I look forward to having you back here again in two weeks so that we can move on to the next topic here on Lewy Body and Mindful Caregiving. Until next time, take care.
