Episode Transcript
[00:00:00] Foreign hello and welcome back to Lewy Body and Mindful Caregiving. I'm Crystal Jakowski and I'm glad that you're here today. I want to talk about the need for keeping a medication log and what you should keep in that meditate medication log. But before that, I always talk about self care. What have I done? Well, I just took a couple of weeks off and really just enjoyed taking, taking a break and being in the moment and not having to worry about some stuff. Had some great experiences that will likely end up being a part of some of my podcasts. So to our topic of making a medication log and why our loved ones are going to go through remarkable, challenging, difficult times. And as they shift from one way of being to another way of being and decline, medications become our friends. Medications become a way that we can navigate the weight and the, the, the shifts. We can navigate the symptoms that they are having and minimize those symptoms. But over time, the body gets used to those symptoms. Get, gets used to the medication. The, even though they're on this medication, the body is still declining in the back.
[00:01:27] The medication only helps so far, so long before you end up having the same symptoms coming back and then you have to adjust for those symptoms. Or maybe you start finding that there is a side effect that wasn't prevalent initially when you first started with that medication. But as you go on and as you continue that there are other side effects and you're like, maybe this isn't good and we need to shift things. So yes, medications become your friends. And I am an advocate for finding out what works for you, what is the best for you and your loved one, not what everybody else says because everybody's biochemistry is different, which means that they are going to react to medications differently. No two people are the same. And while one person might have increased side effects in this arena, another person might have no side effects and be perfectly fine. So, so do what's right for you. Do what's right for your loved one. Work on that more than listening to other people's. I mean, other people's input is important and yet you don't know how your loved one's going to react. So I recommend, because our loved ones are going to go through so many different medications over this that you keep a log. Now I have a log in my laptop. This log started three or four years ago, actually.
[00:02:54] It was simply a way for me to tell people, hey, mom takes these in the morning, these midday, these at night, so that I could hand it off if I wasn't Going to be in town. Somebody else could look. I could email it to them, and they can look and make sure that everything is good to go. Or they could help parse out my mom's meds so that she was good to go.
[00:03:14] It was a way for me to kind of keep track of things and her. Her meds. As we would go to a doctor, we have this little slip of paper that I keep in my. My little hand wallet. My mom keeps one in her purse. And so when we go to the doctors, we literally, they say, have you had any medication changes? We pull that out so that they can compare that list along with that list. Also has all of her surgeries and hospital procedures on it. So they are able to compare that and see if anything's changed according to what they have in their system versus what we have on this sheet. So we keep that up to date, and it's perfect. It's great. But it's not a history of where we've been. There have been many medications that we have taken my mom on or off.
[00:04:07] I didn't worry about it too much. I just was like, okay, we're moving to the next one. And now I've got to focus on how these side effects are going to be and what do I need to navigate. She's more dizzy. Okay, is this a scary dizzy that I'm worried about her falling over, or is it just a slight increase? Okay, now the dizziness is gone. Now we're dealing with just whatever is coming up.
[00:04:34] Recently we went to a doctor and we were talking to them about how in the beginning on this particular medication, my mom's Shakespeare were minimized, she was not as bad, and that the hallucinations that my mom has were minimized dramatically as well. Now my mom's hallucinations are harmless, and they like any. She looks at something on the wall, and if there's a pattern, things are crawling up the wall. If there's a pattern on the floor, then it looks like the floor is crawling.
[00:05:06] So they're not like scary, harmful ones. Um, and she recognizes that they are not real, that the floor is not really moving, but it's. It's disturbing. And when she tries to walk, then she feels like she's going to fall over. So we were talking to this doctor and a newish doctor about this decline that has happened because she's been on this medication for a year and a half, and she has obviously declined in the background.
[00:05:38] And the doctor said, well, let's put her on this medication, because medication S will be like a booster to medication Y. And I was like, okay, But I happen to know in my brain that she was on medication X and we took her off for some reason.
[00:06:02] I don't remember why we took her off of that medication. I don't remember what the side effects were. I don't remember where she was at and what caused us to say, this is not beneficial for her. Let's take it off. I do know that they tried to take. Put her on. Back on it right after we had taken her off of it, but by then we had switched to a different medication and it was contraindicated. So you can't have her on those two meds at the same time because they'll go against each other.
[00:06:31] So I don't remember why we took her off. I don't have that detailed of a list. I know she was on it.
[00:06:39] Why did we take her off of it?
[00:06:42] So this is my letting you guys know that from now on, I will be a why and what. As far as her medication shifts and changes. There will be an added column in my spreadsheet that says, we took her off of this for this. We took her off of that for this. We put her on this for this. So that I can better navigate and deal with it. Because there are so many and over such a long period of time, it's really hard to remember the what's and whys of all the past ones. I can remember the what's and the whys of the ones right now. And as we were shifting through them, I could. I could navigate the most recent shifts into this shift.
[00:07:28] But a year ago, I don't remember the medications without looking at my list, and I don't remember why because I didn't write it down. So I just encourage you to be aware of that. I encourage you to start keeping a more detailed log and analysis of the what's and whys, because the doctors don't necessarily keep that information either. They don't necessarily keep the information. Oh, well. Well, this side effect was very upsetting and disturbing. It was causing more problems than actually helping. So we took her off that. The doctors don't do that. That's not on theirs. They're just like, okay, that's not working. Let's throw something else at it. It's not in their wheelhouse to be that most doctors. It's not in their wheelhouse to be that documented and regimen. So this is my advice to you. Short and sweet, but very, very poignant and important because this is a long journey. This is the long goodbye.
[00:08:24] And what's to say that putting my mom on this one again isn't actually beneficial, and that the other changes that we've made have made it so that there isn't a problem with this one, and maybe there wasn't a problem with this one in the first place. I don't know. I have no clue. So I hope that you guys can learn from my experience and will start adding that one bit of depth, which is going to really pay off in the long run when your loved one needs a new shift and a change. I hope that you're doing well. I send you my love, and I hope that your year is going well. Do a little bit of self care, remember that you're not alone, and we'll see you next time here on Lewy Body and Mindful Carrion.
