The Caregiver Cup Podcast

Navigating Emergencies and Inpatient Care As A Caregiver Advocate

• Cathy VandenHeuvel • Episode 243

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Navigating the stormy seas of caregiving during chemotherapy can be daunting, especially when unexpected crises arise. Picture this: a routine chemotherapy session quickly spirals into an emergency room visit due to alarming symptoms like a rapid heart rate, fever, and severe headache. This episode of the Caregiver Cup podcast takes you through our whirlwind experience, shedding light on the importance of preparedness and the critical role caregivers play as advocates. Discover the essential steps to efficiently manage emergency situations and ensure your loved one receives the best possible care.

Preparedness is key in high-stakes medical emergencies, and this episode arms you with invaluable tips to stay ahead. Imagine having an organized "grab and go" bag with vital documents or being equipped with both digital and physical copies of your loved one's medical history. These are just some of the strategies we explore to help you tackle emergency room visits and potential hospital admissions with confidence. The episode also delves into the vital advocacy skills required to navigate various medical settings, ensuring that you remain a strong support system for your loved one.

Communication is the lifeline during such trying times, and we delve into practical advice on how to engage effectively with healthcare providers. Learn how to ask the right questions, stay informed, and manage stress through small, sustainable self-care routines. With personal anecdotes of managing hospital care during a snowstorm and insights into maintaining balance amidst chaos, this episode is your guide to becoming a resilient caregiver, ready to take on the complexities of medical emergencies with tenacity and grace.

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Speaker 1:

Well, hello, my friend, and welcome to another episode of the Caregiver Cup podcast. It's Kathy here. Hey, thank you for taking the time to listen, and my hope is that you gain a bit of inspiration, tips or insights into this episode today and it fills your cup to keep going in this challenging journey of caregiving. Today I'm sharing my challenges from last week and I'm going to share some inpatient and emergency room advocacy and really the things that I did well as a caregiver, some of the things I struggled with and didn't do well, and tips from myself and others that can help you when your loved one has to go to the emergency room or has to be admitted inpatient, and so I think this is going to be an episode where you can either use it now or you can pull it out if you need to, especially if your husband or your spouse or your parent or your loved one gets admitted to the hospital. So let me share what happened. So last week, it's admitted to the hospital. So let me share what happened.

Speaker 1:

So last week, tuesday, it was just like a typical chemotherapy day. He went in for his lab work and then he had his oncology appointment, and really the oncology appointment is to do the physical exam. It's taught to get some of the history over the last few weeks. The doctor looks at the lab work and makes sure that he's healthy enough for the chemotherapy. He passed flying colors, no problem there. He had his chemotherapy and then we were driving home and I knew that this appointment, this appointment, the chemotherapy, seemed different. He wasn't alert. Going home he slept in the passenger seat, which sometimes he does, but most of the time like 95, 96% of the time he's sitting alert and usually talking to me. He slept most of the way home and then when we got home, he just wanted to get into his pajamas and he slept most of the way home and then when we got home, he just wanted to get into his pajamas and he slept most of the day. He slept most of the rest of the day. We had his appointment. I can't remember exactly. Oh, here I'm looking at my calendar. He had his appointment for 8.30. Treatment was at 10. So we were home probably about maximum time, one o'clock or so.

Speaker 1:

Like I said, he slept most of the day. I checked in on him and about 4 pm he said he had a nasty headache, almost to the point that it felt like a migraine where when he opened his head he just couldn't handle it. And I was like his head he just couldn't handle it and I was like, hmm, that's weird because the pre-meds that he gets before his chemotherapy are Benadryl, anti-inflammatory, which really help with. It's like an ibuprofen kind of in an IV kind of format with a little bit higher dose. And then he gets an anti-nausea med. So usually he doesn't get anything like that and I said, well, I can get you a couple of Tylenol, get you to drink a full glass of water, but he gets IV fluid so he shouldn't be dehydrated. And then he went back to sleep and then about 7.30 pm I checked on him again.

Speaker 1:

I checked on him beforehand but he was sleeping and he said he felt nauseous and he could barely hold his head up and it just was pounding. And I'm thinking, gosh, the pre-med should have taken care of this. And so me, I get out my handy dandy, all of my handy dandy, amateur nursing stuff. Like the thermometer showed he had a fever and he was chilled and so got him an extra blanket. Did the pulse ox thing, that little thing that you put on your finger to check his pulse ox and his pulse and the oxygen level was within the 90s. So that was good. But his heart rate was really high. And then I asked him to check his Apple Watch to look to see what his heart rate was and it was 145 resting. And then his blood pressure was fine. I am a little high, but nothing major. And so I called the triage nurse right away. And you know how the hoops and you have to talk to somebody and somebody calls you back and all that kind of stuff. But once I got a hold of the triage nurse, she just said it's time to get to the ER. I would not wait, especially with chemotherapy. I would not wait, especially with chemotherapy, we don't want anything to go ahead, and because his immune system is really strapped anyway. So we headed to the ER. It was about 9 pm. We got there by 9.30.

Speaker 1:

You go into the ER, you check in and then you get into a room and it did not take long at all. And so the one nurse took vitals, hooked up, the EKG monitor and his heart rate and it still showed a very high heart rate. The EKG seemed abnormal. But his vitals were out of whack too. So they did all of that Immediately there was two EMTs that were in there that were helping at the night shift with the nurses. And there was two EMTs and each one grabbed an arm and they both took his arms and put in IV lines or ports in his veins in each of his arms and they drew blood cultures. The doctor was in there saying this is what we're going to do. They did a urinalysis, a nose swab, a chest x-ray. He was getting the overall treatment.

Speaker 1:

I was kind of teasing him a little bit to say it looks like a pit crew in here and they were moving so fast. But it was amazing because you have to be there and they're asking all the questions. The nurse was asking the questions everything from meds, doctors, history, does he have a DNR? All of that kind of stuff. So they were asking family history and all of that. And as we were doing that too, the doctor was in explaining, asking Dennis questions about what had happened and stuff like that. And then the doctor was explaining we're just doing all of these tests to just determine if it is an allergic reaction, if it was an infection. We need to rule out everything, especially since you just had chemotherapy.

Speaker 1:

And so after maybe about an hour all of the test results started coming in and what's nice about modern technology is we could see some of it coming in on the app, although the room had spotty service. So if I walked around and went down the hall or whatever, I could go ahead and see what the results were. There was no COVID, no influenza A, no influenza B, there was no RSV or any respiratory virus. His EKG was abnormal from the last time they did it. He definitely had tachycardia, which was a rapid heartbeat, but as it went forward and as they were giving him fluids and all of that kind of stuff, his tachycardia went down to like 100, 115. So it wasn't in the mid hundreds, which was nice. His urinalysis came back normal. His x-ray was clear was nice. His urinalysis came back normal, his x-ray was clear.

Speaker 1:

But the doctor came in and said he meets the criteria of sepsis and I had to ask a lot of questions because sepsis is looked at differently than it was years and years ago. They try to do early stages and trying to figure out if it's a skin infection, a lung infection, a heart infection or just a bacterial infection, and he leaned towards the bacterial side. A doctor thought it was an infection and or an allergic reaction to the chemotherapy, or both, and so he had to consult with the oncologist, which took another hour. But during the meantime they gave him antibiotics, fluid, and then eventually they came back in and said, yeah, he needs to be admitted and monitored and observed for a while to see what is going on. And so that was about 9.30 we arrived at the ER and by 2 am he was being admitted to a room and, as a caregiver, you know, you just go into go mode I don't know how else to describe it with me, but I just go into go mode and just like, okay, let's not think about it, let's just move forward, let's go ahead and get treated.

Speaker 1:

No time to panic, no time to get anxiety, no time to go ahead and think about anything else but what the main focus is. And that's just how I react, and you know you may react differently, but I don't panic yet because it's like we don't know what to panic. But it reminded me, though, as I was processing, after about 12 hours of doing this, this reminded me of how you and I have these advocate skills as a caregiver that are so very, very important, and it's almost like we have to flip a switch to see which advocacy skills we need to use, because at home it's a little bit different, at the doctor's office it's different, in the ER it's different, and then now in the inpatient facility it's different as well. And so I wanna break these down, because when I was an advocate, when I was on the phone with the triage nurse, I had all of the small things that I had to relay and I'm so glad I had my little things that I had, like the thermometer, the pulse oxator, the I don't know I called it the pulse ox thingy the blood pressure cup and his medicine list and then his treatment plan that he had for the day. I had that all in front of me and so I could go ahead and talk to the triage nurse. One thing that I had fumbled with is trying to find the number to call so that I could go ahead and get directed, and so I fumbled with that, and I was surprised that I didn't have the doctor's, dentist's, doctor's number or oncology number in my phone, and that was just a reminder for me to get that into my phone so that I would never have to fumble. Thank goodness, his paperwork was right, I have a clamp and I put it on the refrigerator so I could take it off of the refrigerator and I found it on.

Speaker 1:

The chemotherapy paperwork has all of these questions. She's standing in front of her computer screen and she's asking about all of the prescription he's on, and so what's nice about it is I had the paperwork from the chemotherapy appointment and the third or the fourth page in is his list of medications that they just went through and so we could run down that list and I had all of his stats from at home because I wrote them on the backside of that paper. When I was calling the ER, she asked if we had an advanced care directive, which was really really shocking to me in that moment and I'm like, yes, we do, we have one on file at this hospital, but I also have one in my bag, so if you need it, let me know, I said. The hospitalist eventually that came in before his admission asked Dennis if he had a DNR and I said isn't that on the advance directive? And she said I still have to ask, which was interesting. So I was glad I threw all of this paperwork in my grab and go bag because the cell reception was spotty in the room and so, if you think about it, I just want you to think about where do you have your loved one's medication list? Where do you have your loved one's advanced directives, their doctor's list, their medical history? Where do you have all of that stored? And if you just have it on an app on your phone, I want you to be thinking about what if I can't access that app? Can you put it in a file on your phone? Can it be in a photo list on your phone, whatever? Or can you create a separate and print off a paper copy and have it somewhere? So I'm going to go to my grab and go bag.

Speaker 1:

I've had this grab and go bag since 2017. And it's just a simple cloth bag, but it's got all of the pockets and everything in it and I've been using this all along. It's a bag that I have most everything in it packed and I just have a couple things that I have to throw in it and I can go in the event of an emergency. In the event, I need it and I want to share with you what I have in it because I want you to think about what could you potentially need for your loved one. What could you potentially need for yourself if you have to go to the emergency room, if they have to be transported into an ambulance, if you're going for doctor's appointments? It's your grab and your go bag. That's always going to be handy, dandy and, like I said, you want all of the information in the patient's stuff in this bag, because things get really overwhelming and move fast.

Speaker 1:

Like I said, the pit crew in there was moving so fast in that ER room and then the doctor came in and he was asking questions, the nurse was asking me questions and all of this stuff was happening, and so for me I just had to go ahead and rely on the best prepared that I could be and all of the things that I knew in my head, but all of the things that I had written down as well. And so, having that, I also have chargers in my bag for my phone, I have battery chargers and I have my plug-in chargers in there and I bought extras so that they could stay in the bag, so that the ones at home, I wouldn't have to run around the house and unplug them and put them in my phone. And that's helpful because my brother-in-law was helping with a family member, and we had a family member that was in the hospital and he says I can't text anymore, my phone is losing its charge and you think about it. You need those things to go ahead and do it, or the hospital usually has a charging station too, so just be aware of that.

Speaker 1:

But in my bag I have snacks like granola bars, a bag of like trail mix nuts, I have my little crackers and cheese and just things that I could grab if I needed to, that you know that you might need. I also have an empty, like a stainless steel water bottle so that I could fill up anywhere I needed to go, so I could have that as well. And I have a bag of coins. I don't even know if the machines take coins anymore, but any vending machines that you would need to, I have those in my bag just in case. So I also have my own hygiene stuff like lotions and lip balm and wipes for like if I had to stay in the hospital for a while or away for a while, I could wipe my hands off or I could wipe my face off.

Speaker 1:

I've learned that I needed bandages, like if you cut yourself or you have a hangnail or whatever, because I tend to bite my nails when I'm nervous, and so I have those in there. I have deodorant and a toothbrush and a toothpaste I have did I say deodorant? I have Tylenol, I have gum, I have like Rolaids or Tums I've had because I've learned that, okay, I was needing something and I'm like, oh, I don't have it. Oh my God, now I'm going to go trying to find a gift shop and buy it next time. I'm putting it in my grab and go bag. I even added, like a scarf because those places are cold an extra pair of socks, especially during the summertime when I would wear flip-flops. So you want to have those things.

Speaker 1:

And obviously, like a notepad and a pen, something to occupy your time. If you like to read a book or if you like to go ahead and do like a little hobby, you could have something in there that you could use. And obviously a file with your loved one's information in it is necessary as well. Like I said, I hang this where I can grab and go it, and it's in my bedroom, behind my door. It's just there and it's just part of my world that I live in and, like I said, it's a grab and go bag. It reminds me of a woman that packs her pregnancy stuff when she knows she's going to be in labor in the next weeks, and she has it all packed. I have mine packed too. So think about what you might need and just have that bag there and you'll be surprised how that is just something that keeps you intact. It just keeps it there Because when Dennis would go for his appointments we would hang his sheet on the refrigerator, but eventually we don't need it anymore, and so then I just put it in my grab and go bag and then recycle the old one, and I would just keep that. And that's why I asked for paper copies. I'm like, okay, they can print the paper and then I'll make sure I recycle it later down the road. Okay, getting back to the story.

Speaker 1:

So after the ER visit, the doctor talked to the oncologist and they admitted him. It was about 2 am and they wheeled him down to his room. By that time he had seen two doctors and four nurses and was about to get a new patient team. Guess what? When he got into the room, what does a nurse do? Again, she goes through all of the questions again the medicine list the doctors, the diagnoses, the medical history, all of that again, because now we have a new team and they want to re-ask the questions, and so they go on and on and do all that. They do all the vitals again. They hook them up to everything again. Then in inpatient and I believe most hospitals have this they have the whiteboard. They write his name on it, the date on it, the nurses and usually there's two or three nurses the RN, the LPN, the support nurse, whatever and then they write the hospitalist, which is the hospital's doctor that will be visiting and will be coming around each and every day and that's the one that monitors the care, and so that usually takes about an hour. It did for Dennis, and then by 7 am he was meeting with that hospitalist or that inpatient doctor and they were taking more blood and trying to figure out what was going on. And so being able to go ahead and see who the doctor's crew is on that board is so vital for us as caregivers, because when the shift changes, they come in, they write the new team on there and they usually tell the patient that this is who's going on, and if the patient is alert, they know who they are, if they're sleeping or they're not alert. You have that board.

Speaker 1:

Let me break from the story a bit first and share some things that I've been reminded of, or those lessons learned that are worth sharing. And first of all, I want you to think about especially when your loved one is in a facility like an inpatient. You are a caregiver and you are their caregiver and you know your loved one more than anyone there. You know them by far and you know their behaviors, you know their moods, you know their history, you know their care, you know if they're complaining or they're in pain, if it's real or if it's mild. You know that. So it's important to be the advocate and speak up by asking questions, giving feedback and or supporting in any way you can. Obviously, you want to be respectful and you want to know that this is the team. You are just the most important part of that team for your loved one. So, like I said, here are a few tips and suggestions I have and you want to really think about what questions that you have and make note of those questions and ask those questions, because I was really still foggy about the whole sepsis thing and, to make a long story short.

Speaker 1:

He went in for integrative or his transitional care. This is Monday and they ruled out the actual sepsis and they now are leaning towards a bacterial infection. But I didn't really understand the whole sepsis thing, because if you Google sepsis, it's deadly. It's deadly if it's not taken care of right away. And what he did is he met sepsis criteria, with chills and fever and the blood culture showing extremely high and his white blood cell counts were up, but he had no physical symptoms, nothing on the skin, nothing in the lungs. His heart rate was up, but that could be because of the fever. So that's kind of what they were doing. So I have to always ask questions about that. With all of the hospital doctors that we had, I asked that same question over and over and over again. You also. You know, I think I have a Google MD, but Googling is really helpful too, or researching the information is helpful too.

Speaker 1:

Results were coming in and then when the doctor came in, it was almost like I processed it first and then he was telling me and then I could ask the question. So if you have that capability, you can. You could say okay, what does this test result? What is this going to do. What could they discover? What are the symptoms of this? Blah, blah, blah, and you could see why they were doing it and how they were doing it. But then you could ask more questions along the way, versus oh yeah, they're just running tests. For me as a caregiver, that doesn't tell me enough. What tests are they running and why are they running the test, and what do they want to figure out or rule out or diagnose? What do they want to figure out or rule out or diagnose? And then they said, yeah, we put him on antibiotics. What type of antibiotic is he on? And then you can look at the antibiotic and you can record that antibiotic, because then you know if it's working and if he's had it in the past. If it's not working or he has an allergic reaction, you know right away and you can circle that. So I really try to adapt to those styles and kind of be like yeah, I'm going to be the assistant that's taking the notes and asking all of the questions.

Speaker 1:

You also know your loved one's treatment history and overall behaviors. He had chemotherapy that day and I know from my chemotherapy training and all the experience I had with my dad and Dennis for the last seven plus years that first week after chemotherapy you have to be extremely cautious with where he urinates. If he sneezes, bodily fluid could get into our skin and it could affect us. And I had to keep reminding the nurses that he was chemo compromised and when they were taking you know doing the urinalysis, I'm saying, okay, just be careful, you have your gloves on, don't get it on your clothes. You know that kind of thing and I know nurses are heroes and they work really fast. But I kept having to remind people about that. Eventually they put a sign on the door so every nurse would know that. Eventually they put a sign on the door so every nurse would know. I also reminded him that his heart rate is never high.

Speaker 1:

Dennis is the kind of person when he sleeps he sets off the buzzer because his heart rate will go down to 40 or 50. And when it's over 100 and he's resting, that's a major issue. And so I made sure I did that. And when he was having anxious moments in the ER for his pain tolerance, I knew it was abnormal because I knew that my husband doesn't have. He has a huge pain tolerance. He's already had dental. He has a huge pain tolerance. He's already had dental fillings done without the Novocaine and he just can tolerate things. And so when he is antsy, when he tells you he's in pain, he's in pain.

Speaker 1:

So I went home after that long night at the ER and went home and took a three hour nap. But then when I came back, dennis was complaining and I you know as a caregiver you need to be very, very supportive of your loved one and listen to what they're saying, because there was things like yeah, the buzzer was going off and nobody comes. I went to the bathroom and nobody's emptying my what do they call it? A hat in the toilet and I've buzzed them and nobody's coming, nobody's giving me any water. So I just went into the bathroom and filled my cup up and those were major concerns for me.

Speaker 1:

So I had to figure out how was I going to deliver that without sounding like a big B, without being defensive because he has an infection. I don't want him pouring the water from the bathroom sink into his cup, because I don't know how good the bathroom sinks are cleaned and if that spout is cleaned and all that kind of stuff. But you know what I'm talking about, and so that's part of our job, too, as a caregiver. And how could we do that and help me understand, when the beepers go off, what has to happen? Because he's getting upset about this? And so I had to have some conversations with them. And then, when the hospital doctor arrived or the hospitalist arrived, and then, when the hospital doctor arrived or the hospitalist arrived, most of the time it was in the morning, one time it was in the afternoon, and so you have to go ahead and listen to what they have to say. Well, I made the big mistake, and it's a really good lesson learned for me. I told him that Dennis was irritable and he was getting upset, and Dennis talked to me afterwards. And he was getting upset, and Dennis talked to me afterwards. But again, how you deliver that with your loved one is going to be very important, and I should have said, yeah, listen to what they have to say. And I could say, yeah, dennis is getting antsy being here, he doesn't like to be here and the buzzers are keeping him up all night, and I should have delivered it that way. Or I should have said do you want to talk about your hospital? Stay, dennis, and let him deliver that message. So I learned that about my loved one, and we're all going to make mistakes, but being able to talk in front of your loved one and delivering the message right is going to be something I'm going to continue to work on.

Speaker 1:

I did leave. I left, like I said. I left that first day and went home, took a few hours of sleep and then came back. And then it was Wednesday and I came back and it was about, I think, about nine o'clock or so 10 o'clock whenever time. I came back and they were talking about this snow, squall, ice storm coming, and so I'm like, oh gosh, okay. So I stayed there for a while and then Dennis and I agreed that I should go home, and thank goodness I went home, because within an hour that I got home there were icy roads, car accidents and everything. So I was so glad.

Speaker 1:

But one thing that you want to think about when you leave is how are you going to get the communication from the hospital? How are you going to get alert if something goes wrong, that kind of stuff. So my advice would be get the nurse's station phone number and so that you can call if you can't get a hold of your loved one. Give them your phone number and I physically handed them. It's in my notes, but I physically handed them my little note with my name and my number on it, and then they asked me to go ahead and put it on the whiteboard, and so that was a good thing. And then I FaceTimed my loved one, facetimed Dennis throughout the night and asked him how he was doing and what was going on, if there was a doctor in there, if I needed to listen, facetime me in. So that worked really good. And so just those few words.

Speaker 1:

Now as far as my self-care and your self-care, it's so very important. Like I said, I went home and slept for three hours and came back. It was Tuesday am when I left and I came back Tuesday am, but I got a few hours of sleep and my doggies were happy because obviously I could feed them in the morning, they could snuggle with me for a little bit, and then I went back there as well and, like I said, it's so important. And then I was able to take my grab and go bag and anything I used I could fill back up. I was able to go ahead and bring up anything that Dennis needed, so that we could do that and it was nice. It was nice. And one thing too is.

Speaker 1:

Another suggestion is if you have questions and you are worried that you might miss the hospitalist, it's important for you to write those down, or have your loved one FaceTime you during that time, and so what you can do is write those down, put it on their tray area or tape it to the whiteboard or tell the nurse that these are the questions when can I put the questions in case I miss the hospitalist, and they can go ahead and ensure that they have those questions asked. Well, by Thursday Dennis was improving, but he wasn't ready to be discharged. So after the hospitalist visited, I took advantage of the extra time and went home, and I didn't come back. The rest of Thursday I didn't. I was up there from about nine until about two, and then I went home and said you know what? I'm going to stay home. If you need me to come back, I will come back, but I'm just sitting here and you can rest. You can watch TV. Before we left, I took a few laps around the hospital floor that he was on, so he got a little bit of movement, and then I was able to process a little bit.

Speaker 1:

One thing I'm reminded of is, in my stress is I move into this go mode and forget about my nutrition. I want you to think about when you're in a stressful situation, what do you do to survive? We all do something different. So I wasn't eating well, although I did have my green spinach shake each day, but I wasn't eating well. I wasn't, and I wasn't doing that, and so I was trying to think of what can I do in the future to ensure that I eat better? And eat better, I mean you could go to the hospital cafeteria and get a salad. I mean you could go to the hospital cafeteria and get a salad. You could, you know, think about healthier snacks in your bag, that sort of thing.

Speaker 1:

So I, you know, I went home and, as normal, I didn't eat. Well, you want to know what I ate. It's terrible, but I ate it. I ate waffles. I go to comfort food when I'm nervous. I go to comfort food when things are in disarray, and so I have to. Maybe that's I just have to accept it, or maybe I have to continue to keep working on it. If you have any suggestions, let me know. I did have a yogurt one day and I did throw in a piece of fruit on Thursday. So when I was up at the hospital I had a piece of fruit.

Speaker 1:

But what can I do so that I kind of stay on track? Now, coffee, coffee, coffee was like my survival mode, but it's not healthy because I noticed in this past weekend my body was off and I had to start getting it back on or I just have to accept it. So, but from a healthcare perspective, or I mean a self-care perspective Now also, what I did is I, by Friday morning, before Dennis was discharged, on Friday morning, I went for a walk with the dogs, I had my healthy spinach shake, so I started going back into the mode of taking care of myself. But I need to remind myself and I put a note in my grab and go bag and it's Kathy's card to self-care. I know I'm not going to be able to do a lot of physical activity, but there are ways to go ahead and do that. I can go for a walk while he's inpatient and he can text me when the hospitalist is going to be there, or I can ask the nurses is the hospitalist on the floor yet? I can go ahead and do deep breaths, breath work. I can do yoga, stretches, I can do all of those things, and so, and you know, there is a chapel in the hotel or in the hospital not in the hotel, the hospital where I could do go in there and do just meditation, and so I just have to be reminded of that and I'm hoping some of the suggestions will fall into play for you, okay.

Speaker 1:

So next I want to talk about communication, because you have to communicate with your family and your friends, especially if you have immediate family members. I have a family text for updates, family members, I have a family text for updates, and so I would go ahead. At the first of all, when we first got to ER, I did text every hour poor family members, because it was in the middle of the night, and so I texted them. I told them if it was a dire emergency, I would call them. But text messages means that we're okay, and so that's my communication and I'm going to just give you updates. And so everybody was okay with that. And if I forgot to give an update, they would say how is it going? And so I didn't have three boys, three significant others, texting me in six different ways. I only had one text chain for them, his friends, that I could go ahead and give updates on as well, and I only gave him an update daily to let them know what was going on so that they could get updates as well.

Speaker 1:

Since Dennis is fighting this journey and going towards a stem cell transplant, we created a Facebook page. It's like I think it's called Don't Stop Believing, because Dennis is a big, big 70s music and so that's a Journey song, don't Stop Believing but we call it Don't Stop Believing in Dennis. And so we're building up to a stem cell transplant and we're able to put fun things out there, prayers out there, updates out there and everybody does it. Every day Somebody's putting something out there.

Speaker 1:

And then I had my personal lifeline and that was my sister, and I didn't know that she was going to be my lifeline and I am so grateful that she was. She was the one that I could text or call and she would check in with me every hour when we were in the ER to the admission. So she was the one that I did. I was able to go ahead and vent and she would be the one. I need you to take a deep breath. I need you to go fill up your water. I need you to go, you need to go home and take a nap. She would be the one that would be my helper. And I can't tell you how good it was to be able to have those three forms of communication and not 90 and not all the craziness. So that's my update today and I want to thank you to you for listening.

Speaker 1:

And then you know what I did. I went ahead and sent an email out on Friday to my email list and I shared a little bit of what was going on on Friday and I asked my email list and if you were on my email list, you're called my VIP subscribers. And if you answered me and sent me a message, I want to say thank you. Thank you for your kind words, for your support, for just praying for me. I got so many of you just saying I'm praying for you, sending you hugs. It means the world to me. I also wanted to share a tip that Kim had sent me that I think is worth noting, and I'm going to just read what she had said. It's Kim in California. She said Sending prayers and good vibes.

Speaker 1:

Kathy, for inpatient stays, I've learned that it's best to plan to be at the hospital between 8 am and 10 am when the hospitalist makes rounds, it's a good suggestion. Or ask when the hospitalist makes rounds, it's a good suggestion. Or ask when the hospitalist is going to make rounds. The rest of the day could potentially be more flexible, but being able to participate in person for that part of the day is a foundational piece. And if you can't like we had one day where the hospitalist didn't come in until 1 pm you could stay there or you could, if your loved one is able to, you could FaceTime in or a conference call in if you can't be there.

Speaker 1:

But during this time it requires the patient, as it requires you, to know what's going on, you to ask questions, you to get answers, you to be the advocate and drive care coordination. That's what Kim had said. I've also learned to read what's left in the room, which is a good reminder. In a welcome folder left on the far side of the room, I learned that aromatherapy was available by request and it shared the attached acupuncture activity for relieving physical and emotional distress used for patients and for the caregiver. Ah, what a great reminder, kim. And she had signed it off by saying may your cup be steadily replenished. Kathy Kim from California, thank you.

Speaker 1:

Thank you, kim, for all of that, and I think that I think about all of the people that came into the room and being able to grasp everything. There are so many people that are going to be floating in, especially those first few days when they're trying to figure out what the plan is. We had a case manager that will work through the entire case and monitor everything. We had two oncologists that visited his oncologist and a nurse practitioner. We had a different hospitalist each day, which made it a little bit difficult. We had faith, support and more, so there's a lot of things. So, in a nutshell, we have to be the eyes and ears for our loved one, and it's not easy, but we don't have to be there 24-7 when they're inpatient. We need to go ahead and have that balance where we take some time for ourselves, and when is that time and when is a good time?

Speaker 1:

Like I said, dennis was discharged on Friday and he's doing so much better. He has his typical chemotherapy feelings, but by far it's not anything else. They actually took that sepsis test and they measured it 24 hours a culture for 24, 48, and a five-day culture and the five-day culture came back negative. So we are so blessed. They know it was a bacterial infection, pretty severe, but it was mostly brought on by the chemotherapy. We will never, ever know what that germ was. I don't think we'll ever ever know. But we're thankful.

Speaker 1:

I put in my notes, I'm grateful and I am glad that I acted fast. I acted fast before it got worse and that's what we do as caregivers we go ahead and do the assessment, we call, we do the triage, we get them in there and we're there. We're playing that active role and it was a huge reminder too to me that as a caregiver we play a vital role for our loved one. So my hope is that the tips today helped you or they will help you going forward. But I know that there's more tips out there. If you have any more, hey, hit that.

Speaker 1:

Send Kathy a message in the show notes and what it does. It'll send me a text message and it'll show up on my computer screen through the program that I use for my podcast. I can't see who you are, nor can I see your entire text number, so I'll never be able to text you back. It just shows me your last four digits of your text and where you're located. But if you send me that, I will share your future tips or any more tips that you have for anybody that's in a facility like a nursing home, a hospital. They have to stay in emergency room visit and outpatient surgery.

Speaker 1:

What are some tips that you have that help you with your self-care and your sanity? What are some tips that you have that help you be a better advocate and care better for your loved one? I'd love to hear from you. But until next time, my friend, have a good week. I am knocking on wood that I have a better week than last week. And one reminder don't forget to find small amounts of time to fill your cup this week, because that's when you can be the best caregiver that you can be. Bye for now, friend.