Episode Transcript
[00:00:10] Welcome back to Louie Body and Mindful Caregiving. I'm Crystal Jakowski, and I'm glad that you're here today. We start off with self care. So what self care did I do? I actually I've been knocking out a whole bunch of Christmas gifts, and I'm making them with my own hands because it means that I am creative and meditative in my time of working on them. And it gives me a moment of peace. And not only that, some of them my mom has been able to join in on. And with her joining in on them, it's been a moment of connection and it lets her feel important and gives her something productive to work on. And because she's so happy and because she's so at peace, it also brings me a lot of peace. So it's kind of one of those I'm sharing my time to be selfish kind of thing in fueling my own cup.
[00:01:11] And that's only one, but that's the biggest one that stands out right now.
[00:01:19] This week I want to talk about tough conversations. Absolutely tough conversations.
[00:01:26] My mom and I are pretty good about being able to talk about really challenging, difficult, scary things.
[00:01:34] I'm sure part of that's me and my ministerial I'm a metaphysical minister, and so I can talk about death and not shy away from it.
[00:01:45] It's in my nature to be soothing and understanding and want to understand the world around me.
[00:01:55] And I don't let her hide. I really just kind of push a little bit in the most gentle, loving way I possibly can. And I understand that some people can't have these conversations with their loved ones and they really need a mediator. So I highly encourage you that if you really struggle with talking about the difficult things when it comes to end of life, that you find someone who can find someone who is ready, willing, able versed in talking about these things so that you can get a better understanding. In the past, I've talked about how important it is to have end of life documentation down. What are their medical wishes? What do they want as far as that goes as they decline?
[00:02:44] What do they want done with their body?
[00:02:47] And my mom, as we were working on these Christmas gifts, we were sitting there and we were painting, painting pottery. So I throw pottery. And then my mom sometimes comes and helps me paint. She enjoys the broad brushstrokes, not necessarily the fine detail stuff, but she'll do the broad brushstrokes and she enjoys that. So we were sitting there and she said, there have been a lot of advertisements on TV lately about people with Alzheimer's. And I said, oh really? And what do you think of that? And she said, It's very upsetting and very scary. And I said, Why? What's going on? What do they talk about?
[00:03:28] Because my mom watches regular streaming TV with commercials, and she said, they talk about how people with Alzheimer's and dementia can get violent and verbally abusive with their loved ones. I was like, wow, mom, that's heavy. That's pretty big. How do you feel about that? She said, I don't want to get that far.
[00:03:55] Said, okay, so let's have a conversation about the other things that you don't want to get that far so that I can help you make sure that you're okay. You see, dementia takes your loved one piece by piece, bit by bit, and it depends on what type of dementia they have as to how it goes.
[00:04:18] Some of them are more they have a system.
[00:04:24] Some of them have more of a pattern with which they progress through the person and their brain and their body. And some of them are completely random. My mom's is Lewy Body Dementia and hers is completely random. And you just don't know what we're going to lose next or what the next challenge will be. It's just going to come and we need to roll with the punches when they come.
[00:04:48] It's entirely possible that if we were to let my mom go all the way to the end of this, that she would still have all of her memories and she would be with it that way, but that she couldn't function in so many other ways. You just don't know. We really don't know. So my mom has her dementia directives. And her dementia directives state that when she is in the later stages of the middle part of that, that she wants to be let go. But that's still kind of a vague nebulous time frame. And at what point do I know without a doubt that my mom is ready to move to comfort care and remove all of the life extending medications, remove all the life extending measures that we've put in place?
[00:05:41] I don't have that answer yet. And so this conversation was an opportunity for us to move into it.
[00:05:49] She doesn't want to be remembered as the parent that was mean to her kids.
[00:05:56] She doesn't want to be remembered as a violent and angry person.
[00:06:03] I can understand that and I can respect that and I can support her in that.
[00:06:08] So if I notice that she is angry and violent verbal with me, then I know that it's time to move to comfort measures because I know she doesn't want to get further down that road.
[00:06:26] incontinency is something that is very common.
[00:06:30] And my mom in the last six months has six to eight months, has had three to four episodes where she hasn't been able to control her bowels. Well, that's very few and far between. So it's not enough to where she wants to wear depends because she's not having it all the time.
[00:06:55] But it's enough that we have to be aware that this is probably part of the path, part of her journey.
[00:07:06] So she said if she is more incontinent than she is in control, that she is done. She doesn't want somebody else cleaning up her bum and changing her. Depends. If she's unable to do that, then she's done.
[00:07:23] If somebody else has to take her to the shower, she's done. She's okay. If someone needs to help cook for her, she's okay. If people need to help with laundry and hygiene and that kind of thing. But we talked about these deeper things of at what point are we shifting to comfort care now, comfort care means that you're no longer doing antibiotics. If somebody gets pneumonia, if somebody gets a UTI, you're not doing antibiotics for that. You're not going to the hospital for severe pain. You're probably not doing doctors appointments anymore. You are probably removing the blood pressure medication, the diabetes medication, the thyroid medication, the medications that are sustaining her body and helping it function right now so that it doesn't shut down.
[00:08:30] Think about the medications that your loved one is on that helps extend life for them and make things better. One that people don't think about is like Ensure.
[00:08:43] Now, as they get along, further along in this disease, as they progress, it's common to lose taste buds.
[00:08:53] Well, if you've lost your taste buds, then everything just tastes like mush or whatever texture is there. So if you have a loved one and you're feeding them often pureed foods because they're having a hard time swallowing, everything just tastes like something slithering down your throat and ask yourself, is that pleasant? Is that where you would want to be? Don't force them if that's not where they want to be.
[00:09:22] Ensure. Some people, when they get to that stage and they can no longer swallow or they really don't want to eat, that's a natural way for the body to start slowing down. However, oftentimes, especially in assisted living, skilled nursing, they will prescribe insure, which means that they're getting additional vitamins and nutrients in the form of this shake this drink. Well, does your loved one want to continue that? Do you actually want to continue extending their life by giving them added nutrients when they've already said, I'm in comfort care. I don't want to be here. I don't want to deal with this anymore.
[00:10:08] It was a difficult and emotional conversation, and yet it brought me a lot of peace because I've been wrestling with this.
[00:10:19] I've been wrestling with, at what point do I know that it's time?
[00:10:25] At what point is it going to be okay? I want somebody else to help make that decision, which is why I'm currently looking at palliative care.
[00:10:37] And what does that mean and what does that entail?
[00:10:45] I don't want to look back like, one of my biggest fears is looking back in five years or ten years and saying, did I do that right or did I push her too soon?
[00:10:56] I'm as a caretaker, as the loved one, who is responsible for managing their lives and their decline, it's a huge responsibility and you have so much power, and that's terrifying. You now have a person who cannot make decisions by themselves. They cannot function largely by themselves. They are so dependent on you, you know, that they don't want to get to the end stages, you know, they want to go before then.
[00:11:40] And yet that means that they're going to be kind of with it.
[00:11:45] They could be very much aware and alert. It could be that my mom has moments of anger and violence, but then she goes right back to being herself, because that is the nature of Louie body. So how many times do I allow the anger and the violence if it goes there?
[00:12:12] How many times is enough? And then it's time to move, to comfort, care?
[00:12:17] And if she's with it, quote unquote, in between these sessions of confusion, then do I feel horrible for taking her life away from her? Or do I rest in peace and trust that I did exactly what she asked for, that I let her go with as much of herself as possible as possible and with as much of her dignity as possible?
[00:12:56] It means that I'm going to be the one saying, mom, I think it's time.
[00:13:06] How do you balance that?
[00:13:10] And how do you find the peace knowing that you have their hands, you have their life in your hands?
[00:13:21] It's your knowledge, it's the trust that they have in you that you will do the best for them to follow through on their final wishes.
[00:14:06] It is right now one of my biggest fears when that day comes to make that decision to support her. And yet I'm very grateful that we have the relationship that we do so that we can have these conversations, that I can talk with her and truly understand what she wants.
[00:14:48] And not only that, it opens my own eyes to what would I want?
[00:14:55] Where would I be?
[00:14:58] What do I want my kids to experience of the end of my life?
[00:15:02] How can I make it easier on my children?
[00:15:08] What can I do to support myself in my own creation of my end of life and in so doing, construct and make it easier for them?
[00:15:24] When you're faced with a loved one's end of life, I think it's natural to look at your own and say, is there something that I want to do different? Is there some way I want to change?
[00:15:41] And if I see that person going through that, this loved one, if I was going through the same thing, what would I personally want?
[00:15:53] How can I support them in their wishes? And how can I take this moment as a learning moment for myself?
[00:16:05] Because if my kids are in this position that I am in and having to make that decision, that really sucks.
[00:16:16] And I don't want that. I don't want another human being to make that choice. And that doesn't mean that I'll choose suicide or actively choose to end my life. But it does mean that I may make decisions earlier about allowing my body to take its natural course. If I'm already in, my major thing happens.
[00:16:43] I may choose not to treat it so that I can choose to go my own way instead of the way of society, which is, let's prolong this, let's extend life as much as possible. But statistically speaking, just because we're extending life doesn't mean we're extending the quality of life. It might mean that we're also extending dying.
[00:17:09] It's an interesting thought.
[00:17:15] Just because we have staved off death, what is our quality of life in those extra five or ten years that we have grabbed onto?
[00:17:32] Are we still able to enjoy it?
[00:17:35] Are we still able to be active and functioning?
[00:17:41] And if not, what do you want to do?
[00:17:48] The hard questions, the hard conversations, they will bring you peace.
[00:17:54] Having this conversation with my mom meant that I had more information than I did before, and it was brought on by her in a very lucid moment, in a very aware moment, saying, crystal, I want to talk to you about this, because it's scary and I know you can support me in it. So can we talk about this?
[00:18:16] Can we talk about the I don't want to get this far, and this far is X. You can fill in the blanks with a million different things to truly understand what your loved one wants.
[00:18:29] And then you can fill in those blanks for yourself so that your loved ones, your partners in life, will also know where you're at, what you want, where and how you'd prefer to be going.
[00:18:46] Thank you for listening. Thank you for being here today. Thank you for joining my journey. I send you love. I sincerely hope that you're doing a ton of self care, at least weekly, if not daily, giving back into your bucket as much as you are giving out to other people.
[00:19:07] Take care, and I hope you come back next week for Lily body and mindful caregiving.
