Episode Transcript
[00:00:11] Speaker A: Welcome back to Louis Body and mindful caregiving. I'm Crystal Dakowski, your host, and I.
[00:00:16] Speaker B: Really am glad you're here.
[00:00:19] Speaker A: I'm grateful that you're joining along on.
[00:00:22] Speaker B: My journey, and I'm really sincerely hoping that you are finding value in joining in and listening.
[00:00:33] Speaker A: Of course, I doubt that you would be joining in if you weren't.
[00:00:36] Speaker B: But starting with self care.
[00:00:38] Speaker A: What did I do for self care this week? What did you do for self care?
[00:00:43] Speaker B: I went on a vacation and spent.
[00:00:45] Speaker A: A little time with my kids and grandkids and my husband. So there were eight of us, and it was wonderful. We went to Florida and the space.
[00:00:55] Speaker B: Coast and Disney and Universal, and I.
[00:00:59] Speaker A: Knew it was going to be a big week, know, three grandkids and my two boys and one of their wives, and it was go, go. I mean, it's Disney, it's fabulous.
And I had told my husband ahead of time that there may be some days that I decided not to join the group. And I had also asked him to bake in a couple of down days so that the entire group, all of the littles that would be so overwhelmed.
[00:01:27] Speaker B: Could rest and relax and for self.
[00:01:32] Speaker A: Care, knowing that I was going to be overwhelmed, knowing that where I'm at in life with my mom, that I'm easily tired, I don't have the stamina.
[00:01:42] Speaker B: That I usually have, I was worried.
[00:01:45] Speaker A: That I would snap at the grandkids or that I would just be a little bit irritable or whatnot. So I intentionally decided that I would stay home. So when they went to the Kennedy space Center, I've already been there a couple of times.
[00:02:02] Speaker B: So I decided to stay home that day.
[00:02:04] Speaker A: And there were a couple of times.
[00:02:07] Speaker B: Where we went to the magic kingdom.
[00:02:11] Speaker A: In the morning and then came home for naps and the afternoon, I decided that I would just stay home for the afternoon, evening, and so I gave myself downtime.
[00:02:23] Speaker B: And it was amazing because I was restored, I was refreshed, I was calm.
It meant that when everyone was there.
[00:02:34] Speaker A: And the kids wanted to snuggle or do puzzles or color or whatnot, that I had the energy to do that with them.
[00:02:40] Speaker B: And I let myself go to bed early.
So I gave myself a lot of self care.
[00:02:48] Speaker A: And I'm really proud of myself for that because I think it can be difficult. I think it can be really hard, especially when we're in a big group and we don't want to miss out on things or we're worried that they won't understand why we're taking extra time.
[00:03:04] Speaker B: For ourselves, and it's my kids and my grandkids, and I really wanted to.
[00:03:09] Speaker A: Spend time with them.
[00:03:13] Speaker B: I also needed time for myself. So I feel very proud of myself.
[00:03:21] Speaker A: For being strong and being able to verbalize.
[00:03:26] Speaker B: This is what I need. And I'm very grateful that every one of them honored the fact that I needed that. They didn't push.
[00:03:36] Speaker A: They didn't try to guilt trip me into coming along. They all just respected the fact that grandma's going to stay at home today.
[00:03:45] Speaker B: Grandma's going to do her for the day.
[00:03:48] Speaker A: So thank you to my kids and grandkids and my husband and pat on the back to me for doing that. And I came home from that trip feeling really good instead of just drained and exhausted from go, go.
[00:04:00] Speaker B: I felt really, yeah, this is great.
[00:04:04] Speaker A: And I got to come home into the cool weather here in Colorado, which I love, snuggling up in the blankets and the sweaters and all that stuff.
[00:04:12] Speaker B: So it was really good for me.
[00:04:14] Speaker A: I hope that you did something really good, too. And maybe you did something that surprised yourself.
[00:04:21] Speaker B: And maybe you can think about something.
[00:04:24] Speaker A: To surprise yourself this week. Find a little extra strength in putting.
[00:04:28] Speaker B: Yourself first in life. Today I want to talk a little bit about an end of life conversation.
[00:04:35] Speaker A: That I had with both of my.
[00:04:37] Speaker B: Boys because it was very interesting for me.
[00:04:41] Speaker A: I have talked to you guys before about the need to do the end of life documents for your loved ones so that you can know what they want. You can be aware of at what point do they want to stop treatment.
[00:04:57] Speaker B: Or are they a DNR?
[00:04:59] Speaker A: Are they go ahead and do a tube, like a breathing tube or a feeding tube?
What are their end of life desires? And not only that, but why? Because there are going to be those gray areas that are really weird and difficult, and you don't really know, would they want this or wouldn't they want this? But if you know the why behind it, let me explain that just a little bit. My husband's why, behind all of his end of life stuff is as long as he can contribute to humanity, as long as he can help somebody with his mind, then he still wants to be kept alive. So if there's a gray area and he's in a coma and it's highly unlikely that he's going to come back from that, then I need to weigh.
[00:05:49] Speaker B: Okay.
[00:05:49] Speaker A: Do we do everything possible to keep him alive, or do we go ahead and let him go? Because his goal is to be able to continue contributing with his knowledge to other people. He wants to be able to continue learning and taking knowledge in and be able to continue helping other people learn and grow.
[00:06:09] Speaker B: That helps me a lot when it.
[00:06:10] Speaker A: Comes to the gray areas. Why do you want this? What is your purpose in being let go or staying here? So that I can help navigate that for them. So what is your personal, why your intention? What is your reasoning behind whatever your wishes are? And make sure that's known, because when the time comes, it'll make it a lot easier. So the last night of our trip, the kids asked about mom. So we had a little family pow out, and we sat down and I was telling them about my mom and where she's at and what's going on.
[00:06:49] Speaker B: With her in her life and with.
[00:06:53] Speaker A: Me in my life, because everything mom's is everything mine as well. So it was a pretty lengthy conversation just updating them on how she's doing and the medications that she's on and why she's on them and what they're doing.
And at one point, towards the end of it, one of my sons, he.
[00:07:14] Speaker B: Was like, well, why don't. Never mind. Never mind.
[00:07:16] Speaker C: I'm not going to ask the question. And I said, ask the question.
[00:07:21] Speaker B: You have a right to know, and.
[00:07:23] Speaker A: I'm totally an open book. What's your question?
[00:07:25] Speaker B: No, I don't need to ask it.
Ask your question. I want to answer your question. And he said, why don't you just.
[00:07:34] Speaker A: Put her in a home? Have you talked about putting her in a home?
[00:07:38] Speaker B: Now, initially, I took this as he's.
[00:07:43] Speaker A: Worried about me and my stress.
[00:07:46] Speaker B: He's worried about the weight and the.
[00:07:48] Speaker A: Frustration that I'm going through.
And I got ready to answer that, and my husband Jay, instead jumped in and said, let me explain that to you. The reason we haven't and won't put her in a home is that where she's at is the best place for.
[00:08:04] Speaker B: Her and that due to her end.
[00:08:07] Speaker A: Of life wishes, she will pass.
[00:08:12] Speaker B: We will be helping her, taking her.
[00:08:15] Speaker A: Off the meds and allowing her to go before she's fully in that 24 hours care need. So right now, where she's at is the best place, and it does not.
[00:08:27] Speaker B: Behoove us to put her in a home.
After this conversation, we were in the kitchen, and it was just me and my two boys.
[00:08:40] Speaker A: And I said, look, I need you to understand that due to what I'm.
[00:08:45] Speaker B: Going through with my mom and the way I see it, I want you to remember me as me, who I am now.
I don't want you to remember me.
[00:08:59] Speaker A: Having to feed me or change my diaper or help me out in any other way.
[00:09:06] Speaker B: I want you to remember me as.
[00:09:08] Speaker A: A strong, happy, vibrant mom.
[00:09:11] Speaker B: And I will choose my own way out. I will choose my own path to.
[00:09:19] Speaker A: The best of my ability. I said, I will probably put myself into a home so that you aren't questioning whether or not you should and what to do about that.
[00:09:28] Speaker B: And my one son was just upset.
[00:09:33] Speaker A: And crying, emotional, and wanted to argue with me.
[00:09:37] Speaker B: And the other son said, it's no.
[00:09:39] Speaker A: Use arguing with her. She already knows what she wants. I've tried to convince her otherwise.
[00:09:47] Speaker B: This is what I want.
[00:09:50] Speaker A: I don't want my kids.
[00:09:54] Speaker B: To have.
[00:09:55] Speaker A: To go through the stress of, is this the right med? Look at this decline. Is this decline because of the meds? Is it because of something else? Like what's really going on? Taking me to all my doctor's appointments, managing my life for me, like I'm managing my mom's life. And I recognize that if I live to my mom's age, my kids will.
[00:10:16] Speaker B: Be in their mid 50s, so they don't need to be 50 when they.
[00:10:24] Speaker A: Should be living life and maybe traveling and taking in the world. When their kids are just leaving the house and they are becoming empty nesters. I don't feel like that's the time.
[00:10:35] Speaker B: For them to go straight from taking.
[00:10:37] Speaker A: Care of their kids to taking care of me. Now, other people's opinions vary, and I.
[00:10:42] Speaker B: Encourage you to find your own path.
[00:10:46] Speaker A: Your own desires, what works for you, what works for your kids.
[00:10:50] Speaker B: And I did ask my kids, how.
[00:10:54] Speaker A: Do you want to honor me? How do you want to acknowledge me? Because I want to honor that as well as I'm passing, as I'm going.
[00:11:04] Speaker B: My one son said, I want to be the one feeding you. It's every morning.
[00:11:09] Speaker A: I've got your spoon. Hi, I'm your son, and I'm just going to feed you today.
[00:11:15] Speaker B: I want to be the one to do that.
[00:11:19] Speaker C: It was so sweet.
[00:11:23] Speaker B: Because I could feel the love behind his statement.
But in the moment I reacted, and instead of acknowledging his love, I reacted.
[00:11:37] Speaker C: With, but what kind of quality of.
[00:11:41] Speaker B: Life am I living at that time if you're feeding me and people are changing my diapers and I can't function?
That gave him pause, and he said, you're right, and you have the right to choose.
It was a few days later, after we got home.
[00:12:04] Speaker A: I'm so very grateful that my children.
[00:12:08] Speaker B: Will allow me to have these conversations with them because I think it's vitally important. And this, with my mom.
[00:12:22] Speaker A: Has really.
[00:12:23] Speaker B: Brought so much of it to the forefront.
It really is an opportunity to take a step back.
It's an opportunity to look at where we're at and where we want to be and what's our best case scenario. And what's our worst case scenario?
[00:12:43] Speaker C: And in the best case scenario, we.
[00:12:47] Speaker B: Get to pass in our sleep at 104 years old after we've gone skydiving.
And in our worst case scenario, what do we want and how do we want to plan for that?
[00:13:02] Speaker A: Because we don't all get that.
[00:13:04] Speaker B: Best case scenario.
The Ods are that it won't be the best case scenario.
So I called my son up a.
[00:13:16] Speaker A: Couple of days later, and I said, are you alone? And he said, yes. And I said, do you have a few minutes?
[00:13:24] Speaker B: And he said, yes.
[00:13:25] Speaker A: And I said, do you have a.
[00:13:26] Speaker B: Few minutes where mom can go deep.
[00:13:29] Speaker A: Hard and heavy and then we can bounce out? And he said, yes, I can do that. So I was very, very grateful that he was so open and willing to do this.
And I said to him, when you said you wanted to keep me alive.
[00:13:44] Speaker B: At all costs for as long as you can possibly keep me here, he.
[00:13:50] Speaker A: Jumped in and he said, I thought I'd offended you because he's a police officer, and he has been taught to see the micro expressions in someone's face, so he can tell when someone's lying.
[00:14:03] Speaker B: He can tell when there's a shift in a brain by the way your face reacts.
So he jumped in and he said.
[00:14:13] Speaker A: I was afraid that I had offended.
[00:14:14] Speaker B: You and upset you. And I said, well, then I'm really glad I called.
And I said, you didn't offend me.
You didn't upset me. You shocked me in that moment, which.
[00:14:26] Speaker C: Is why I took a minute.
[00:14:30] Speaker B: The reality is I was surprised at your level of intense love for me as your mom.
I was surprised that you would want.
[00:14:47] Speaker A: To be the one holding the spoon.
[00:14:50] Speaker B: Because I don't want to be the one holding the spoon for my mom.
I want to navigate her care, and I want to make sure that she has the smoothest transition possible, but I don't want to hold the spoon.
So then it opened up a good conversation about our love for each other.
[00:15:12] Speaker A: And our relationship with each other.
[00:15:16] Speaker B: And where we stand.
[00:15:18] Speaker A: End of life conversations are conversations that.
[00:15:22] Speaker B: Have to take place over several moments.
[00:15:27] Speaker A: Because there's so much to talk about that it can really be heavy and it can really be upsetting, especially if.
[00:15:33] Speaker B: The people who are another part of that conversation are not ready to talk about it.
[00:15:41] Speaker A: If they're not ready to even consider, the fact that this loved one that's sitting in front of them is not.
[00:15:50] Speaker C: Like they're going to die.
[00:15:53] Speaker B: This loved one sitting in front of.
[00:15:55] Speaker A: Them at some point in time will not be on this earth.
It's hard.
[00:16:06] Speaker B: To look at a person and think, there could be a day that I wanted to pick up the phone and hear your voice, and I can't.
[00:16:18] Speaker A: And while some of us may be in a space like I am with my mom, where we are faced with.
[00:16:24] Speaker B: Death, we are faced with the inevitable.
[00:16:27] Speaker A: We don't know when it's going to happen. We don't know necessarily exactly how it's going to happen, but we know that that is the only exit to this situation. And because we are faced with it.
[00:16:41] Speaker B: Every day, day in, day out, we are more intimately aware, we are more likely to say, it's okay, I can talk about this.
[00:16:57] Speaker A: Whereas somebody who is just living their.
[00:16:59] Speaker B: Life and going through all of the.
[00:17:03] Speaker A: Beautiful things that surround them with their work and their family, their kids, their loved ones, their friends, their just life.
[00:17:10] Speaker B: In general, they're living life, and the.
[00:17:14] Speaker A: Idea of death is not something that enters their realm.
[00:17:19] Speaker B: So broaching that subject, having those conversations, is a little more difficult. Once you have been touched by death.
[00:17:29] Speaker A: Especially a sudden death.
[00:17:32] Speaker B: I think that.
[00:17:33] Speaker A: You'Re more likely to talk about it, especially initially with people.
[00:17:37] Speaker B: But over time, it ebs off.
My cousin's husband passed ho very unexpectedly, and because of this.
[00:17:53] Speaker A: She went to all of her siblings and had a family meeting and said, I want to.
[00:17:57] Speaker B: Know what you want. I want to know what you want. I want to know what you want, because I want to take care of you. This was the second sudden death in her family. One of her siblings had passed a few years prior, and nobody knew their.
[00:18:10] Speaker C: Wishes.
[00:18:12] Speaker A: So that facilitated her telling her siblings, we have to talk about this.
[00:18:17] Speaker B: But they had all been touched by it, which meant that they were all a little bit more receptive to it.
[00:18:24] Speaker A: Especially because it was fresh.
[00:18:25] Speaker B: And in that moment, I urge every one of us to move that time frame up, stop saying that it's morbid.
[00:18:38] Speaker A: Stop being afraid of talking about it, and start acknowledging that this is a.
[00:18:43] Speaker B: Conversation that we should open up and.
[00:18:48] Speaker A: Choose to have willingly and be able.
[00:18:50] Speaker B: To say, hey, I want to talk about this.
[00:18:53] Speaker A: Let's talk about the frosting on the cake.
[00:18:59] Speaker B: And I know that that's a morbid.
[00:19:00] Speaker A: Or that's a weird statement to make right now, but let me explain that.
[00:19:04] Speaker B: The frosting on the cake is my mom in her last weeks, right.
[00:19:10] Speaker A: We know that she's going to pass. We have hospice in there. Does my mom want music playing, or.
[00:19:15] Speaker B: Does she want it quiet?
[00:19:17] Speaker A: Does she want a party? Does she want people around her saying hi? Does she want flowers in her room? Does she want a certain smell in the room? Does she want it to smell like we're making cookies? Do we need to figure out how to make that?
[00:19:32] Speaker B: Because my mom bakes a lot, and.
[00:19:34] Speaker A: She bakes for other people all the time. And then she'll make cookies, and then she'll put them in little baggies, and she'll put those baggies in the freezer so that when people come and visit her, when she knows someone's coming, she'll take the baggie out of the freezer and let it sit on the counter for a few hours so that it thaws out. And then when they come, they get this nice, fresh bag of cookies.
[00:19:54] Speaker B: So what smells? What sounds?
What lighting does she want?
[00:20:02] Speaker A: Like, do we need to get colored bulbs so it's more subdued? Does she want the sound of the ocean, or does she want birds? Or does she want the sound of the wind rustling through the trees?
[00:20:15] Speaker B: Does she want just white noise?
[00:20:17] Speaker A: Like, what is it? What's the frosting?
[00:20:20] Speaker B: We talk about the nitty gritty and.
[00:20:22] Speaker A: The I don't want CPR, and I don't want a feeding tube or give me everything and keep me alive. And we talk about the medical aspect, but let's talk about the other calming, soothing, spiritual, emotional aspect that can be the frosting on the cake. Like, once I know all the nitty.
[00:20:39] Speaker B: Gritty, then it's, how can I make it even better?
Because, I mean, dying is going to.
[00:20:44] Speaker A: Suck, but how can I make your.
[00:20:46] Speaker B: Transition as smooth as possible?
[00:20:50] Speaker A: How can I help you be as calm as possible?
[00:20:53] Speaker B: Do you want church music playing in your room so that you can be reminded of your lord and savior, so.
[00:21:03] Speaker A: That you can know you're coming home?
[00:21:06] Speaker B: What do you want as a frosting on the cake?
[00:21:09] Speaker C: So.
[00:21:12] Speaker B: I know that I will have more conversations with my boys, and I.
[00:21:17] Speaker A: Know that those conversations will continue getting deeper and deeper and deeper, especially as my mom is here.
[00:21:25] Speaker B: I've had a few of those smaller.
[00:21:28] Speaker A: Conversation with my siblings as I update them on what my mom is going through. And honestly, I want to dive deeper.
[00:21:36] Speaker B: What do you really want?
[00:21:39] Speaker A: What's the cool frosting on the cake that is unique, that I wouldn't have thought of? Maybe I actually want that kind of.
[00:21:45] Speaker B: A frosting on the cake. The conversations that you can have, the.
[00:21:51] Speaker A: Opportunity that is there because this is staring you in the face.
[00:21:56] Speaker B: And honestly, for me, and I would hope that it is true for you.
[00:22:02] Speaker A: Too, being able to talk about that.
[00:22:04] Speaker B: Part of it, being able to talk.
[00:22:07] Speaker A: About what my wishes are or what someone else's wishes are, acknowledging that death is there makes it a little bit easier to deal with moms, because.
[00:22:20] Speaker B: Instead of pushing it in a closet and.
[00:22:23] Speaker A: Hiding away from it and saying, no.
[00:22:25] Speaker B: Death'S not going to happen, it's acknowledging it.
[00:22:28] Speaker A: It's pulling the boogeyman out from under the bed. Pulling the boogeyman out from underneath the. Out of the closet and saying, hey.
[00:22:35] Speaker B: I'm looking at you. I see you, and I'm going to choose how I come to you.
I want this. I want that.
[00:22:48] Speaker A: It's not as heavy. It lightens the load a little bit and makes things a little bit easier.
[00:22:53] Speaker B: So have those conversations.
[00:22:56] Speaker A: I'm grateful for the conversation I had with my sons and the way that it came about.
[00:23:01] Speaker B: I'm grateful for the heartfelt understanding and.
[00:23:06] Speaker C: The shift that's there.
[00:23:08] Speaker A: And I'm grateful that I called him.
[00:23:10] Speaker B: Back up so that we could talk about it and that he could know I was not offended at all because I was just surprised momentarily.
[00:23:23] Speaker C: At the.
[00:23:24] Speaker B: Depth of love that he has.
So I hope you have a wonderful week.
Thank you for being here. Please talk about it.
[00:23:39] Speaker A: And if you're not ready to talk about it, maybe write something down so that you can at least have that.
[00:23:45] Speaker C: And then move forward and take the.
[00:23:48] Speaker B: Opportunity to talk when you can, because it will help. I promise you, it will help.
You may learn something about somebody that you didn't know. And that's a fun little gift, too.
[00:24:02] Speaker C: So do a little self care.
[00:24:06] Speaker A: Go have some hot tea or some coffee. Curl up in a blanket. Love on yourself. Give those people around you that you love so very much a hug. Hold them close and recognize that this.
[00:24:20] Speaker B: Moment is a gift.
And in that gift, it is an opportunity.
It's an opportunity to make a memory stamp and say, this is amazing.
I'm so grateful for you.
It's an opportunity to express our love for each other. So I hope you come back next week for the next episode. Code of Louis body and mindful caregiving take care.
