Episode Transcript
Hello, and welcome back to Lewy Body and Mindful Caregiving. I'm Krystal Jakosky, your host, and I want to build on what I talked about last week with a little bit of story time.
Last week I talked about the importance of end-of-life documentation, of making sure that people know what you want and trying to find that out from your person, if at all possible, before the bigger disease progresses too much.It means that instead of trying to figure out what your decision is, you get to say, “No, this isn't my decision; this is theirs. And I already know what they wanted and how things need to go.” So, in that vein, I wanted to tell you that it will be difficult.
My mom ended up in February of 23 in the hospital with a kidney stone. Now, this kidney stone was blocking her ureter from the kidney, the tube from the kidney to the bladder. It was blocking to the point where it was shoving the urine back up into the kidney and the kidney was really struggling. So she went in. We didn't know this at first. We went in, We had home health come to the house, and they did a little blood prick, and they checked some stuff out, and they were like, “Well, if she doesn't improve by tomorrow, then you should take her into the hospital.”
So I took her to the hospital, and she was in pain. She was really struggling. We go into the E.R. when they give her some saline solution, and they do some tests, and they were like, “Well, I think that she's all right. We're going to go ahead and send her home.” So they sent her home. The next, it was later that evening, probably 8:00 at night, and my mom calls me. She says, “I need to go back to the hospital.”
I said, “Okay, fine, let's go.”
The pain meds had worn off, and she was not doing well. So I put her in the car and I drive to the hospital and I'm hoping that I miss all of the bumps in the road. We get to the hospital, and I explain to them, “Look, you guys sent us home.She's deteriorated. This is not good. She was more confused, more emotional, more uncertain.”
The doctor comes into the E.R. room, and he notices in her chart she has Lewy Body and he also looks at me, and he says, “Thank you for being here and supporting her.” He knew right then, and he honored and respected me, knowing that I was going to be the one dealing with him more than her. So we went down all of her symptoms, and he ordered a bunch of tests, and we found out that it was a four-millimeter kidney stone. Extremely painful. It is stuck. It's not going anywhere and they give her a whole bunch more meds. They give her another drip. They give her pain meds. They gave her a med that was supposed to help dilate that tube so that, hopefully, this kidney stone would be able to move further down but by now, it's been a couple of days, and that tube is so swollen and irritated from that spikey kidney stone that it's just even though you're enlarging it, that stone's not going anywhere. So he admits her, and we decide that we are going to have to do a surgery where they go up through there and they blast the kidney stones, and then they put in a catheter.
Not a catheter. I forgot the name of it. Sorry, but they put it in this tube, and it holds the ureter open so that urine and the bits of the kidney stone can come out without a problem. A stent. Thank you. So I'm in her room with her. The nurse comes in, she checks on her, and then the nurse leaves.
My mom started in with what's called psychosis. She looked up at the ceiling. Now, to me, this was a very pristine white ceiling. There is nothing but cleanliness up there. And my mom says, “Oh, that is a really dirty ceiling. We might need to have housekeeping come in and clean that because that is so dirty.Can you see all of that dust around the vent up there? Oh, this is unacceptable. It's a hospital. It's so dirty.” She was in this space where she was out of her own normal surroundings, which kind of changed the switch in their brain. All of a sudden, things are just different. So I looked around and said, “Huh. Well, I hadn't really noticed that, Mom. I didn't realize that it was so filthy.”
I didn't acknowledge that what she said was true, and I didn't deny it either. “I didn't realize that it was so filthy. Have you thought about what you want for dinner?” Now, I completely changed the subject. I completely sideswiped that whole thing. And I did that because I didn't want her to stress out with the idea that she was having a hallucination. I didn't want her to freak out that she's seeing things that aren't real. Because my mom, if she did, she would be very emotional. She would start to cry. She would feel insecure and inadequate. She would be afraid about “Why is my brain working so weird?” She wouldn't understand it. And she's in psychosis. You can't speak reason to someone who's missing the conductor. That frontal lobe is flickering and not working.
It comes time for us to go into the surgery, and the whole time, I'm letting them know I need to be with her. I'm her Medical Power of Attorney. I need to be with her. I'm here. So I go with her down the elevator, down the hallway to this place. And again, the nurse recognizes the Lewy body. It was beautiful because now that I had this diagnosis, people would ask my mom questions. I would be standing on the other side of the bed from her, and I would be able to nod my head yes or no and adjust the conversation enough to help them answer. And if there was something completely off the wall, then I was able to jump in and answer. And sometimes my mom would say, “Just ask my daughter” instead. But they didn't question my being there. They didn't question my answers. They didn't question whether or not I was authorized to be speaking on my mother's behalf because the diagnosis was there. The diagnosis has been a blessing to us because now we know what we're facing. Now we can say, “All right, it could go this way, this way or this way. What resources do we have in case any of these things happen? Did any of these crossroads come up? What do we want to do, and how can we make this journey a little easier for me and a little easier for you?”
So we're moved into this room for, it's the pre-op room. The nurse was absolutely wonderful, and she addressed the Lewy Body directly. And then the anesthesiologist came in the room, and he sat down by my mom's bed. She looked completely with it, lucid. If you had met her on the street, you would think that she was perfectly normal. You would not have any wonder if she was normal or not.
So he sits next to her and he asks her a couple of questions, and she gets them right. Like, When's your birthday? What's your name? What day is today? My mom's able to answer all of those, and then he says, “So I see that you're a DNR. Are you sure you don't want to change that? I mean, it would really be a shame if you died from a simple kidney stone surgery just because, you know, you wouldn't let me do some chest compressions, and I could bring you right back without a problem. I mean, are you sure? I mean, wouldn't you like to change that for this hospital Stay?”
I was livid. I was so Mama bear angry, hackles up, ready to take this guy out of the room and give him a what's for. I was so mad because if I step in and say “My mom is a DNR, and as a DNR, I want you to respect that and let her die if you screw things up.” it makes me look quite witchy, and I did not want to come off as, “I don't care about my mom, just let her pass”. And I didn't want my mom to be upset by the whole conversation. And if I get my hackles up and I'm really upset then my mom thinks that I'm upset with her. So, I had to manage my emotions, calm them down and I asked my mom, “Hey, are you okay if I take care of this paperwork for you?”
Mom says, “Oh, yeah, please do.” So I took the paperwork out of his hands, and I marked DNR. Very nice. Here you go. She's a DNR. No chest compressions, No nothing. If you lose her, you lose her. And I signed the bottom, marked it that I'm the Power of Attorney and I gave it back to the gentleman. He was not happy, but he left the room.
I tell you the story because when you know what your person wants, you are going to have to be a strong, firm, confident advocate on their behalf. At the beginning of that hospital stay, the doctor that started in the emergency room was very kind and respectful and said, “Thank you for being here.” He understood the situation.
The first doctor who saw us in her room tried to get us to change the DNR for the hospital stay. And he was pretty pushy. “Are you sure that’s what you want? I mean, let's just think about this.” And he gave her scenarios about why she should change this. Now, hospitals don't want somebody dying on their time. It's a dark mark for them. But you know what? My mom's a DNR. I'm not going to change it for a hospital stay. It doesn't mean I want my mom to die because somebody did something. And yet, in the same aspect, I know that those are her wishes. So I have to be strong enough to say, “No, this is what she wants.” You will have to be strong enough to say “No. These are their wishes. If they were absolutely 100% sane, this is what they would say.”
The funny thing is that she looked so lucid, and as soon as the nurse that was so kind and recognized the Lewy body aspect of things left, and the anesthesiologist left, my mom looks at me, and she goes, “Do you see those footprints on the ceiling?”
“Wait, what footprints, Mom? Tell me about them.”
“Well, they're like big footprints.”
And I said, “How big?”
“They are too small to be a daddy Bigfoot. And they're too big to be a baby, so they must be a mama Bigfoot.
And I said, “Well, how did they get there?”
“Well, they must have done a handstand on my bed. That's how they got up there. I just can't believe they didn't get that cleaned.”
And I said, “Wow, Mom, that's, that's pretty big. So, how are you feeling about the surgery?” I changed the focus. I changed the conversation to something else, and we were able to move on again. I did not validate that she was seeing them, that they were real, that I saw them. I let her tell me about them. The thing with Lewy Body is you are going to have hallucinations. Now, these were extreme hallucinations for my mom. They were in the hospital psychosis avenue of hallucination. Some people will have very disturbing hallucinations, so upsetting and scary. Other people might see a little kid sitting outside the window waving or playing with a ball. The kids are not really there. The hallucination isn't hurting them.
“Hey, what are you looking at?”
“Oh, there's a kid with the ball.”
“Oh, well, enjoy looking out the window.”
Sometimes, you need to step in and get them help. Sometimes. You don't always. You have to advocate for their wants, for their needs. Knowing what they want will help you. And the biggest part of that for me was that when I signed those documents, and I said, “No, she's a DNR, leave it as is.” I felt less weighed down personally because I was able to remind myself, “This is my mom. This is my mom's wishes. That's what she wants. So I'm not killing my mom.” Because, let me tell you, there are tons of different thoughts that go through our minds as caregivers.
I'm not choosing to kill her. I am choosing to follow her wishes. You will have to be strong. I cannot emphasize that. Emphasize that enough. You will have to be strong when it comes to advocating for them, for their wishes, and making sure that they are taken care of in the most compassionate, respectful, loving way possible.
Take a deep breath. Know that you're doing okay. I'm really glad that you're here so that we can talk about this. So that you can learn from my experience and hopefully take gems and nuggets home to help bolster and buoy your own experience. I encourage you to do self-care. Remember, the only way for you to keep giving what you are giving is to make sure you give just as back. Give back just as much to yourself.
Until next time, I send my love. I wish you the best, and we'll see you here again on Lewy Body and Mindful Caregiving.
