Episode Transcript
Welcome back to Lewy Body and Mindful Caregiving. I'm Krystal Jakosky, your host and thanks for being here.
This week will be an emotional week.
So start off with care. What self care did I do this week? I went and played pickleball. I didn't really want to. Well, I mean, I did because I like playing it, but I had fallen asleep on the couch and I was giving myself a nap. So that's another piece of self care that I did.
My husband gently woke me up and said, “Hey, do you want to play pickleball? Are we going?” And I very groggily got myself off the couch and I went. I had a great time and met some new people and laughed and it was a beautiful bright spot.
So, I took a nap, I played pickleball.
Today I'm going to let myself cry. That's going to be the self care I choose. Let the emotions flow. I hope that you did something fabulous, too.
Lewy body.
Being a caregiver for my mom is definitely the hardest thing I've done, which is saying a lot. It's absolutely saying a lot because I've been through a lot. We all have. We've all got our challenges and ups and downs. We've all got the lessons that we get to learn in life and some of them are a little bit easier than others.
This one is just more. I’ve been married, been divorced. I've left the religion of my childhood. I've been raped, I've been abused. I've really had to fight through some stuff. And so I look at this particular thing and to say that it's the hardest thing I've gone through is… I think it's pretty big and I don't think it's just because I'm in it right now.
I think, yes, my divorce was the hardest thing that I went through at that time, but I didn't like, had I known that this was coming around the corner years later, I would have gone, okay, well, I can handle this because I'm going to go through that.
I find myself in a weird, unique place because I'm also a life coach. So I help people create the life that they want to live and I help them find the positive, joyful parts in life and I help them shift their perspective. And so here I am. I'm a caregiver for my mom and I find myself struggling. I'm giving myself the same advice that I would give any one of my clients and I want to tell myself self to shut up. I want to tell myself that I don't want to hear that because this is so difficult.
People say, “How are you doing?” And it's an automatic question. People say, “How are you?” But I don't think that people always really want to hear. If you were going to sit there and listen to me say how are you? My answer would be much longer than just a two minute. “I'm fine. I'm doing okay.”
My answer would be, you know, really emotional. “I'm a bit tired. I'm constantly worried about my mom. I'm struggling today.” Or, “Today happens to be a better day than yesterday.”
I find that many of my relationships, unintentionally, are becoming more surface type relationships instead of those deep, supportive ones, because I don't feel like they really want or need to listen to all of that stuff.
As a life coach, I would tell my people to find something positive. Something joyful in it, to be grateful for. So when a friend asks, “How are you doing?” And I say, “Well, I'm hanging in there, and mom is stable.” Those are two things that I can be grateful for.
I'm hanging in there. I absolutely am.
And my mom is stable, which is a gift, stability in that moment. So I can be grateful for both of those.
But even though I'm grateful for those, it doesn't mean that things are any easier or any lighter or joyful. Lately, the emotions have all been right on the surface. They're just hanging out there, waiting for a moment to come out. I don't want to let them out, because if I let them out. I'm afraid that I won't stop. Because this isn't going to stop. It won't stop until she passes.
And they're very intuitive. They're very, people with dementia, Lewy body, vascular dementia, Alzheimer's, whatnot, they become very intuitive about their surroundings. I go visit my mom, and she says, “Hey, Krystal, you look tired.”
I say, “Yeah, I am, but it's okay.”
I'm tired because I'm paying attention to everything for her, and it's weighty. She says, “Well, how do I help?” And my brain immediately thought, “You'll help when you pass, when you die.” I didn't say that I held my tongue, but that thought was so… it was so mixed.
There were parts of me that were like, yeah, that's true, and I'll feel relief. And I didn't berate myself for that. I was very grateful that I was able to see it for what it was, an honest reaction. And yet it was also sad because it was, yeah, but that means that you won't be here anymore, and I won't be able to laugh and talk with you or check in on you, or roll my eyes at the negative comments that you have.
Let's just honestly face it that it's really hard to juggle it all.
You can see today, I'm tired. I'm not really sleeping well. I'm not really sleeping well because I'm worried. And it's not just my mom as a caregiver. I'm still working with life. I'm still trying to run a business. I'm still a mom and a grandma. And yes, my kids are grown, but one of them is going through a really difficult time right now in his relationship, and it may not survive. As a mama, your heart goes right out to them and you want to help and support in any way you can. So you have the stress of caregiving, which is a constant low grade pressure cooker, and then you have anything else that's going to come and be right on top of that. So your family, your friend relationships, your own relationship with your partner, your kids. The challenges that your kids go through if they're older and you want to support them or your grandkids.
Every little thing is just another thing. On top of being a caregiver and supporting that person that you so love and care about. You wouldn't be choosing into being a part of their life if you didn't care about them, if you didn't want to be that person that helps them through this twilight tragedy of an experience.
A friend of mine, we were sitting down, and we were talking about just life in general. It was another couple and then me and my husband, and we were all just kind of sitting there chatting. And the spouse of this other couple looks at us and says, “You know, I think of you guys as good people. You care about everyone around you and you try to create joy and wonderful experiences for everyone. And you're so giving. I hate that such bad things. Are happening to you as good people.”
And I thought, “It doesn't matter whether you're a good person or a bad person, challenges happen.” The life coach part of me says, :Yeah, that's so that we can learn and grow.” And the human part of me says, “I don't want to freaking learn and grow. I'm tired of learning and growing. I really just want to enjoy for a little bit. Can't I just learn and grow by serving other people and witnessing their challenges and being a loving support to them? Why does it have to be so freaking close to home and why is it so just damn difficult?”
I've always thought that I handled stress really well. In this situation, this type of stress. I don't feel like I'm handling it very well. I go to my talk doc and I work through things. But sometimes those sessions leave me a little frustrated because I don't like what she has to say, and I don't like where I'm at in life, and I don't like how it's so hard to find a light, a little bit of joy in this sea of weight.
I mean, you know, there's no end to it. Meaning there is an end. May not be the end you want, but that's the only end to it. And it's so nebulous and so uncertain that you have no idea if that's going to be six months, one year, five years, ten years. You have no idea. You just know that you are in this.
You are here, you are helping. You are constantly choosing into the confusion, into the upset, the frustration into watching their meds, in for when they decide to be mad and lash out. In for when they're declining in a way that is so heartbreaking. And you can't take that away from them. Not that you would want to, because you physically want to be healthy yourself and you wouldn't want to be losing your mind, losing your memories, losing your connections with other people.
You want it to go swiftly. And some people might think that's horrible and self serving, but in the same aspect, it's merciful to think about letting them be at peace sooner than later. Instead of the long, drawn out loss of dignity and upset, the forgetting who you are and who the people are around you. The anxiety, the mistrust, the suspicion. I don't want to take it from my mom, but I definitely wish that it would go faster, wish that it would be more merciful.
My mom doesn't believe in suicide. She was raised that it was wrong.
And suicide, I think, is the wrong word, because in this state where she's at, I don't feel like allowing her body to take the natural course and shut down is suicude.
Like, we're treating her for high blood pressure. We're treating her for diabetes, which is medication induced. We're treating her for thyroid issues and her body's struggling and shutting down. This body that God gave to her.
Medically, we keep intervening. Medically, we keep saying, “No, we need to keep you alive. We need to extend your life, because that's what doctors do. We want to make it longer.” But in this situation, do you really want to make it longer, or do you want to allow the body that you were given by The Creator to take its natural course and shut down in a more dignified manner? Is that really suicide, or is that compassionate release?
As a caregiver, I have to weigh that, because I'm her medical power of attorney. I'm the one who has to make those really, really tough decisions and walk through that. Even when the doctors try to convince me otherwise.
We're sitting in the office, and we're talking about my mom's diabetes, and my mom said, “I don't want to treat my diabetes with shots. I don't want a shot every day. That's not what I want.”
And the doctor proceeds to try to convince her, “Oh, but they're little now, and you don't even feel them. And it would be once a day, and it's not a big deal.” and tries to convince my mom that it's okay to get the shots and that she actually really does want the shots.
Which is infuriating.
I'm sitting here in the doctor's office, and I have to say, “Hello, my mom's wishes are this, and I know you're a doctor, and you need to extend life, but what about the patient? What about what the person's wishes are?”
And then I feel like an asshole because in front of my mom I'm saying, “Shut up and let my mom die.” And that's not really what I'm saying but it can come off that way.
What I'm saying is “Don't draw it out because she doesn't need that. She doesn't need to be miserable longer. She doesn't need to forget longer. She doesn't need to be incontinent and reliant on everyone else for so much longer.
Stop.
Just stop.
I want her to be okay, and I want me to be okay. I'm scared that after a long time in a pressure cooker of sadness and weight that I won't come out the same on the other side. Will I still be able to find joy? Will I be that happy-go-lucky, positive person? Because I don't feel like it right now. I really don't feel like it.
I feel weighted down and tired. I feel sad. I feel scared. I seek out opportunities for self care. I'm doing it. I'm taking my own advice and yet finding joy is difficult. This feels like a black abyss that I'm putting a lot of energy into and not a lot can come back because mom can't give back. That's just the way that it is.
So I keep giving and I keep hoping, and some days are better than others because I know she's never going to improve. She's never going to heal and be normal and live a much longer life. I just have to be there for the rest of it. And that's dark and that's weighty.
I want the joy. I miss the joy. I miss the belly laughs and how it could sustain me for a long time because right now when I find those tidbits of joy, they're like tiny little pin pricks. Kind of like those tiny stars up in the sky and there's a long distance between one and the next one.
So how do I make it through? How do you make it through? I keep looking. I keep seeking. I go play pickleball, even when I'm tired and I don't really want to play pickleball. I mean, I do, but I don't. I'd rather sleep. In the same aspect, I know that I'll laugh when I'm playing and that laughter will be a moment that releases wonderful endorphins and brings my mood up a little bit so that I don't fall further into depression, that I don't fall so far that I can't get out.
I go to the movie with a friend because it's a comedy and I know I'll laugh. And if I can laugh, I'm going to help myself out. It's a part of that self care that I keep encouraging you and me to do. What can make it better? What can lift you up, what can support you, how can you bring more light into that dark sky so that when you're walking around, you don't need a flashlight because it's bright enough to see?
I'm working on it. The emotions are so close to the surface, and I'm working on it. I know that if I keep working on it, that if I keep seeking, if I keep trying, that I will end up coming out of this on the other side a better version of myself.
I'll be stronger because I didn't let this crush me. And maybe I'll be a little bit happier because it'll be easier to find the joy in everything that surrounds me.
I look for wonder right now. I try to find that because things that I used to be just awed at, “Wow, that's amazing.” Aren't as amazing and awe filled. It's like, “Yeah, okay, so the way the light during the sunset goes across the grass is really pretty, great. But it's not gosh, look at that, It's so cool. It's so beautiful. I'm so glad I get to be right there.”
People remind me, they say, “Hey, do you realize how amazing that is?”
And I'll go, “I'm glad you see it that way.”
This is a long journey. This is a marathon, not a sprint so pace yourself. Find support. Find those people that you can be absolutely genuine with who love you and support you and want to know really truthfully, “How are you doing, and what can they do to support you in that?” Because that's how you'll get through this. Finding joy, self care, recognizing that you're not alone, little pin pricks of light.
And then see if you can just rip that fabric open and bring in more joy. That's what I'm doing. I'm taking my own advice. I'm working through it. It's a challenge, some days more of a challenge than others, especially when I'm not sleeping very well. Sleep is so precious, and yet when I'm stressed, it's hard to sleep, which means I need more naps. And it means that nutrition, healthy nutrition that fuels my body and my mind, lots of hydration, making sure that I'm drinking water and whatnot come into play. You have to balance that out, and you have to nourish and support yourself in any way that you can to make sure that you can get through this.
You can get through this. You will get through this. We're going to do it together. I am sending you love. I am sending you support. I seriously pray that you continue doing that self care and find something new to do this week.
Until next time here on Lewy Body and Mindful Caregiving.
