Episode Transcript
Welcome back to Lewy Body and mindful Caregiving. I'm Krystal Jakosky, and I'm glad that you're here.
This week I want to talk about medications and the good, the bad, the ugly. Everything about it. And I always start with self-care. So, I am co reading a book with my grandson. He lives in Arizona and I live here in Colorado and we're both reading the same book. We have phone calls and we chit chat about it and I got to read a chapter to him the other night. It was so great to geek out on the book together and laugh and discuss what we would do if we were in the same space. So it was just a fantastic little an hour long conversation with my grandson that just really buoyed my spirit.
So, medications. Man.
I have said time and time and time again,You know your person best. You know what they're going to like. What they're not going to like. You know what their baseline is, you know, if they seem off, if they seem good, if they seem challenged. You know your loved one better than anybody else, which means that you have to pay attention.
There are so many medications out there. So, so many. I want to reiterate a fact that I have said over and over again, and this fact is, Dementia is not curable. You cannot cure any form of dementia. All you can do, all you can hope for, is managing the symptoms. You can use medications to help manage the symptoms that are there. You can use medications to help gain more clarity to help with their memory. Depending on where they're at in the disease, you can get medications that will help with hallucinations if your loved one’s having hallucinations.
There are so many medications out there that can help manage the symptoms, but this is not treating the disease, so keep that in mind. First and foremost.
Due to the fact that there are so many and due to the fact that each person is so unique, what works for one person will not necessarily work for another person. You really have to have them take it. Pay attention to what's there, do your research and if it's not working, take them off of the medication.
This is very frustrating.
This is a realm. I know more about medications than I ever thought that I would. I never thought that I would be in a place where I would be researching each and every medication and what their side effects are, so that I can understand what's going on with my loved one. But that is where we're at.
In the beginning, we had a very early diagnosis for my mom, a very early diagnosis. We were very lucky in that it's because I was so close to her and saw that there was a problem. I took her in and pushed to get a diagnosis, because at the time she was seeing the walls crawl and, things were not stationary.
There were other issues that I was like, “That just doesn't seem quite right.” We were trying to solve the crawlies, the walls crawling. That's what she called them. The crawlies. The crawlies are there and we were trying to understand. We went for MRI's and we went to optometrists and we went to ear nose throat specialists, just trying to understand what was going on.
And the last one was neurology and that is where we discovered that this is absolutely Lewy body dementia. We then got into a mental health professional who specializes in geriatrics and dementia, and she immediately put my mom on some medications that are supposed to help with dementia. It was like we gained six months back
Before my mom started taking those medications. She was super weak. She was borderline falling over, but not necessarily falling over. She was more forgetful. Her decision abilities were very questionable. She had hallucinations and other symptoms that I can't think of at this moment. Once we got her on those meds, the crawlies were, like, almost not there, almost non-existent. They went from there all the time and really upsetting and disturbing to where she couldn't read a book or watch TV to, she could read a book now. She could watch TV now. She could move around and be just fine. She went from weak and feeling like she was going to fall over all the time to, “Yeah, it's okay, I got this. Not a problem.” Still upset about the diagnosis and upset about the impending declining of her abilities and yet she was more able to function and deal. She was less anxious.
The medications that we got her on helped with her anxiety and stress in that realm, which was a huge deal because my mom would stress about everything and anything under the sun. With that stress came diarrhea, heart palpitations or a myriad of different symptoms. She couldn't sleep, so to get all of that under control was a gift.
Now, the medications that we put my mom on are medications that other people swear up and down, “Never put your loved one on this medication.” But it helped my mom. And this is why I say time and again, you know your person. You do what's right for your person. Just because somebody else had a bad experience with their loved one on that medication does not mean that you will have the same experience.
Try it. Figure out what works. They are super helpful and this is the good thing about it. The good is fantastic and so very helpful. If you think about it, you can take an acid reducer so that you're not dealing with acid reflux. You know that you can take an aspirin or a Tylenol or an Excedrin if you have a headache that is just not going away. There are absolutely, even for someone without dementia, beneficial times when taking a medication is a gift and so helpful. Find what works.
The bad is that sometimes the body will get used to that medication, and so they'll start to decline and you'll be like, “What? Like, why are you so forgetful now?”
It might be time for a medication change. The bad is that we have three doctors now for my mom. We have her regular primary care. We have palliative care. And then we also have this mental health psychiatrist. Right. That means that the palliative care is prescribing the pain medication, and the psychiatrist is prescribing the dementia medications, and then her regular primary care doctor is prescribing anything for her thyroid or her heart or blood pressure, anything else that is body.
If you don't have all of these doctors talking and if they aren't fully aware of what she's on and why, and when you increase this and when you increase that and what are all the symptoms, it the bad is that it can be a royal pain in the butt trying to keep everybody on the same page and trying to navigate and negotiate.
So, my mom will be on a new medication and eventually she'll say, “You know, my digestion is a little off and I'm having stomach cramps.” Okay. Let's look at the side effects of the different medications. Let's look at the food that you've been eating. Let's look at the stress that you're under. How can we figure out why you're having these stomach cramps and rough bowel movements?
“I'm having headaches.” Okay. Let's look at anything that's new. Anything that’s changed. Is it the medication? “I'm having constipation.” Okay. Is it the medication? Is it this? You're constantly trying to understand what is going on. Now, that's not necessarily the medications fault, but it is absolutely part of you being a care giver and dealing with everything that there is to deal with.
It's crazy. The bad is that it's just like a constant guessing game. Sometimes you feel like you're throwing darts at the wall. And because you might have to change medications here and change medications there while you're trying to find what works for your loved one, it can be overwhelming and frustrating.
My mom has had a challenge sleeping since November. She will sleep, for she now goes to bed at 8:00 at night and she sleeps until about 11. And then she wakes up in pain and so she takes another medication. She takes a Percocet and she goes back to sleep, and she kind of tosses and turns the rest of the night. She doesn't really feel like she's getting a good night's sleep. In the beginning we put her on one medication and then we added another one.
We put her on one for pain, and then we put her on one to help her sleep. That wasn't working, so we increased it and then we increased it again. Still didn't work. Okay, let's take her off of that one and let's put her on these two instead. So now she's on a new one for pain and still the sleep one isn't working. So let's change that one up and let's change this one up. So literally in March, she's sleeping a little bit better and she's having less pain, but we are still shifting the medications to find what she needs.
At the same time dealing with any side effects that come along because of the constant increase in meds or changing to a new med or or or it can be rough. It can be unbelievably frustrating. And yet that is what we do so that they can have a better quality of life. If
I was not here paying attention to her meds and to her side effects, my mom would have a much lower quality of life because she would just deal with not sleeping. She would just deal with having the headaches or having constipation or diarrhea. She'd be like, “Oh yeah, I noticed my feet are swelling” and eventually that swelling would have gone up and added to congestive heart failure. So medications are challenging.
Now. The ugly is that there are sometimes hidden things with medications that you don't really know that are going on. The side effects are side effects that people have noticed. They're often upset stomach or, diarrhea, constipation, drowsiness, shouldn't drive. There's just those regular ones. But we don't necessarily always know what's going on inside the body or to the body.
One of the medications that my mom was on, turns out, was causing a problem with her red and white blood cells. We changed doctors, and this new one did extensive blood work to understand where my mom was at internally, physically. In those tests, this doctor found out that her red blood cell and white blood cell counts were pretty frickin low, that her heart, rhythm was a little bit off and the swelling was… There was a list. There was just a list.
It turns out that one of these medications, in the background, was causing the majority of those issues. My mom had been on that medication for a year, and the other doctors didn't do tests and find that and think, “This is a problem.”
Now, my mom had swelling that we noticed back in July. Some of the medications cause the swelling. My mom ended up with diabetes. It was medication induced diabetes, literally from the medications that she was taking that were making her memory so much better. So what do you choose? How do you work that out? Do you continue taking the one that's making her memory better, knowing that it's causing diabetes, and then take something to fix the diabetes?
You become like a dog chasing his tail. Well, let's take this to fix this, which is going to cause this so that we're going to take this, to fix this, which is going to cause that, and we're just going to keep going on this spiral, all because you need the one to help with memory and clarity.
That's ugly. And you are the one that says, “You know, something just doesn't look right. Something just doesn't seem right.” One of the medications that we put my mom on for sleep, she had been on it for two months and everything seemed fine. But then she started declining rapidly and I mean rapidly. Magically, one week she was still where she's been at, you know, 70%. The next week she was at, like 50%. And I was looking at her like, what is going on? She didn't want to go get the mail anymore. She didn't want to get out of her chair. She, was unbelievably sedentary. She was turning down coming to watch movies. Which, movies is one of her favorite things. There were so many things that she was just like, “No, I don't want I don't want to do that. I don't want to do that.”
Literally looking at her and the way that she was declining, my gut said, “If it continues this way, we only have a couple months. I don't know that she'll make it through the spring.”
So I let my siblings know. Then my gut said, “Get her off of this medication. Get her off of this medication.” And I didn't understand why, because she'd been on it for two months, and there was no reason why I would suspect that specific medication as being the one that was causing a problem. But I followed my gut because I have learned over time that my gut is rarely wrong.
So I got her off of half of the dose. I just did it without really having a doctor's okay, which is not something that I suggest that you do.
She improved, and I went to the doctor and I said, “Hey, something's wrong. I don't think this is right. And I'd like to see if we can take her off of this specific med.” and the doctor researched it and said, I think that that's fine. Let's go ahead and take her off of it.
Took her off of it. My mom today is, it's amazing. The comeback, the change, the bounce back that she's had from then to today. She's back to getting the mail all the time. She's back to riding her bike. She has a stationary recumbent bike. in her room, she's able to walk into a store without leaning on me. And then she gets the cart and she's buying throughout the store.
She has dramatically improved simply because we got her off of one medication that was not doing her any favors. It was not helping her, and it was actually making things so very much worse. If your loved one is declining rapidly, there's usually something underlying. There's usually something else there. Look at the medications, do blood tests and find out if there's an infection like a UTI. Maybe they have a kidney stone, maybe they have something else going on. Infections often increase all of the symptoms of dementia. The hallucinations, the confusion, the forgetfulness.
Now, if they have an infection, you're obviously going to be adding a medication. And that medication is going to have side effects that you're going to have to navigate along with all of the side effects they've already got going on. And yet you end up having to choose. You end up having to choose, is this medication, is the benefit that this medication is giving my loved one worth it? Worth the side effects that they are dealing with or is it not?
And do we need to get them off of a medication. You need to evaluate that. In our case, I believe that the medications for the Lewy body dementia are absolutely worth it. They are super helpful, super beneficial, and have really lengthened her quality of life and her longevity.
Her ability to have conversations is amazing. So yeah, those medications are absolutely worth it.
Now, do we think that we need to add another medication because she has high cholesterol? No, we don't at this stage. We don't really care about the cholesterol. We're going to let that go because I don't want to deal with the side effects from that. And we already know that she's on palliative care and choosing not to treat stuff like that.
So, Good, bad, ugly. What are you willing to deal with and work with? If you are the advocate and you are paying attention, you get to be the one saying, “I don't think this is working and I don't think that is working. What can we do instead?”
Now, you do have to give it time. People go on to a new medication, especially like antidepressants and stuff. They take weeks to build up in the system and actually truly work the way they need to work in order to be beneficial. So you have to be patient with some of these medications and allow them time so that they can start working. There are other medications that should be more rapidly, and within a week you can be like, “You know what? This isn't good. And we need to get them off of it.”
You know your person, you know your loved one. You are the advocate. You are the one that will help them through this. They don't know that they need to speak up about the weird way that they can't scrunch their toes because their feet are so swollen. They just deal with it. They don't think about telling you, “You know, it hurts when I swallow, but it's just like right here on my collarbone. It's not necessarily anywhere else.” They don't because it's only when they swallow. And maybe they're maybe you're not around when they're doing that. And it doesn't happen all the time. So since it doesn't happen all the time, I'm not going to worry about it.
“Yeah, I had some chest pains last night, but I'm fine.” They don't think about telling you that they have these issues. You have to ask. And in asking and finding out, “How are you feeling? Where are you at? How's your sleep? How's your digestion? What have you eaten lately that you really enjoyed?”
Asking them questions and learning where they're at so that you can then address anything that's a little off that doesn't seem quite right. A lot of information. Do your research and you've got this. Your loved one is very lucky to have you. Even if they don't verbalize it, even if they don't know it consciously, because the disease has taken the mind that once really was them.
I think that's everything I have to say on this one today. So I hope you have a wonderful day. I hope that you do some great self-care, and I hope you come back for the next episode of Lewy Body and Mindful Caregiving.
And in the meantime, do some self-care. Take care.
