Episode Transcript
[00:00:10] Hello and welcome back to Lewy body and mindful caregiving. I'm Crystal Jakowski and I'm glad that you're here. I hope that you're getting a lot out of these episodes and that you don't feel alone, that you're being reminded to do self care. Today I want to talk about embracing the medications that are there.
[00:00:28] And before I do that, we always start with self care. So what did I do for self care? I. I hurkle durkled. I stayed in bed longer than necessary and I've done that a couple times this week. Just really choosing to give myself that break, that slow, easy morning before the day just hits me and I go like a freight train because I am a goer and a doer and I do help a lot of other people and. And I give a lot out. So Hercule Durkling staying in bed longer than necessary is a way for me to give back to myself and enjoy my day before my day starts.
[00:01:09] To our topic today of embracing the meds.
[00:01:13] This was counsel given to me from somebody else who dealt with their own parents decline. And one day the dad was out traveling and things didn't seem right. They came home and it.
[00:01:29] He had a diagnosis of lewy body and 18 months later this loved one was gone. So a very fast decline, a very quick time from diagnoses to the end.
[00:01:46] And that was heavy. And that was a big thing for them to deal with. Merciful for both the loved one and the caregiver, and yet still so, so tragic and difficult to deal with.
[00:02:01] Embracing the meds was his counsel to me.
[00:02:07] Why the medications don't heal it, they don't stop it, they don't fix it. Underneath those meds, your loved one is still declining and struggling. So why would you do meds? Why would you choose to do that? Here's the answer.
[00:02:27] Quality of life and support.
[00:02:31] These medications are meant to help your loved one through this difficult time.
[00:02:39] Gonna dive into mom and her situation because that is the real world experience that I have to relay to you so that you can understand and help Lewy body. A lot of people have hallucinations. There are medications out there that can help minimize the hallucinations.
[00:02:57] With lewy body, there are a lot of sleep disturbances. And these disturbances are you can work with medications to help minimize some of those hallucinations. Lewy body is a.
[00:03:10] One of the hallmarks is a challenge regulating their emotions. My mom is constantly anxious and struggling. There are medications that can help her be less anxious and struggle less. All of these things. My mom, on a daily basis, if she didn't have the medications, the walls would be crawling, everything would be moving, nothing would be stationary, which would cause more stress and anxiety because she would be seeing these weird things all the time. Why would I not give her a medication to soothe that?
[00:03:43] Why would I not help her out?
[00:03:45] My mom has parkinsonian tendencies, so she shakes a lot. There is medication to help with that. Why would I not help minimize that Parkinson's? So that she can continue doing puzzles or she can do Sudoku's.
[00:04:02] Embracing the medication doesn't mean that I believe that she will be healed from this.
[00:04:08] It does mean that her quality of life is a little bit better because I have chosen to help her be okay. She's not great, she's not wonderful. It's. She's still going to forget things. She is still going to decline. In the background, she will decline. And you might need to increase the meds, or she might get used to those meds and you might have to change medications from one to another. You might try one medication and find that it makes things worse before they get better. You might have to change that medication because it gets worse and not better. And so you want something different.
[00:04:47] Some people will say, stay away from this particular med. It did this to my loved one. Human biology means that each person is going to process, their body is going to process that medication differently. It is not going to be the same as the next person. So you have to find what works for your loved one. And wherever things seem a little bit more stable, a little bit more manageable, a little bit more okay. To deal with, think about it. You personally, if you weren't feeling well, would you not take care of yourself? Whether that meant an over the counter medication or a prescription med to help you get over an infection, what would you do for yourself and why wouldn't you do that for your loved one?
[00:05:35] Now, towards the end, things are going to get a little more difficult. And for my mom, in my mom's case, she is in a lot of pain. She has what they, they have diagnosed as mild arthritis in her right wrist.
[00:05:47] My mom, they say mild. To my mom, the pain is a nine or a ten. She has nothing else to focus on. And so all she focuses on is that pain in her wrist. And it is so terribly bad. Well, if I have a pain, I'm going to go take an excedrin or something to help me feel better.
[00:06:10] Why would I not do something for her as well? So we have her on a medication to help make that better. She was having a hard time sleeping at night. Part of that was because she was having hip pain, and part of that's just because she was having a hard time sleeping. So why would we not help her sleep at night? You embrace those medications to make their quality of life a little bit better while they're still here and with us. Now, there's one little thing. With this. I went to the pharmacy, and I was refilling her, uh, her oxycodone.
[00:06:44] And this oxycodone my mom is able to take throughout the day for additional pain on her wrist.
[00:06:52] She also takes the oxycodone at night, and she's on a different medication at night. That's for pain and sleep.
[00:06:59] And the pharmacist said, do you want some narcan?
[00:07:04] I said, what?
[00:07:06] Well, your mom's on a lot of pain meds, and if she was to overdose, you could give her this, and she would be okay. You would be able to keep her alive until the paramedics were able to get there so that they could take care of you and help her continue on with life.
[00:07:27] And I had to take a second, and I looked at the pharmacist, and I said, no, I don't want the narcan.
[00:07:38] Do not want to add that.
[00:07:41] I don't want to have it on hand.
[00:07:44] It was a big deal for me to say this to the pharmacist, because if my mom overdoses on one of these medications, I am choosing to let her die. I am choosing to let her go, not bring her back, not worry about it. She just. Odd. We're done.
[00:08:10] I'm looking at the pharmacist, and I'm telling her, it's okay to let my mom die.
[00:08:15] It's a really big step.
[00:08:17] Now, for other people, they may not like that, and they may decide that they want the Narcan, that they want to be able to reverse or try to fix it and make their loved one live longer. And that's totally your choice. I support you in whatever is right for you. But for me, I don't want to prolong this anymore for my mom. I don't want to make her suffer any longer than she has to. And as her caregiver, I don't want to have to watch her suffer or also suffer along with her while she goes through this. So if that just happens to be the way that she ends up leaving this world, I'm okay with that.
[00:09:02] Embracing the meds means you find the medications that help you and your loved one, as you go down this journey, down this path, you take it one step at a time and something's going to happen and something's going to shift and you're going to need to change this med or add another med. And when you add one or you change one, then you have to deal with the way that they interact with each other. You have to deal with any new side effects that come up and you find a new normal. And it can be a roller coaster, trying to truly embrace, understand and navigate the ups and downs of that medication roller coaster. And yet, when you hit those spots and you have a little bit more of a glide than the ups and downs, you'll be so thankful that those meds are on board and that you've gone through this far to make sure that she's okay. Yes, you have to pay attention. Yes. You check in with a pharmacist. Yes. You might end up doing a bit more research to make sure that there's not a problem. There have been times that a doctor has said, hey, your mom needs to be on this particular medication. And I'm like, no, we took her off of that medication because it was doing this, this and this. Or I had another doctor prescribe a new medication and I said, wait a minute, that medication is not supposed to be taken with this medication. It says so on the sheets online. Like, I looked it up to find out and make sure that we were doing okay.
[00:10:35] My pharmacist also looks at things. She knows me. I walk in and I say, hey, I'm here to pick up prescriptions for my mom. And she's like, let me pull them up. And so she looks at my photo id.
[00:10:45] I have a relationship with the pharmacist now to help support me in making sure that my mom is getting the right medications and we're not doing something that will make things worse.
[00:10:59] Don't.
[00:11:01] I want to say, don't simply listen to other people. I want to say, listen to your own experience and your own knowledge.
[00:11:12] Medications have side effects, and some of those side effects are absolutely scary. Your loved one is already suffering. They are not going to get better. None of us get out of this alive. So is it worth putting them on a medication that has a possible side effect of ABC when you know that it's going to to help with their clarity or their hallucinations and their shakiness and their forgetfulness? You weigh the pros and cons. They're going to pass away anyway. So how can you make her time or his time, their time here on earth, better.
[00:11:52] I think that's what I have to say today. Nothing else is coming into mind right now. I do these all off script. I just kind of go with it. So if you have any questions, if you have any thoughts, if you have any feedback, feel free to reach out. And remember to do self care. Embrace the meds, make your own decision on Narcan, where you want to go with that, and when you're asked about it, then you'll have a better answer. And hopefully we'll see you again next week. Until then, take care.
