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The Caregiver Cup Podcast
Empowering caregivers with knowledge, resources and tools so they can be the best they can be. This podcast focuses on ways for the caregiver to reduce stress, burnout, can embrace moments of joy in their new normal. Listen weekly to Cathy's personal experiences, coaching, tips, inspiration, and interviews.
The Caregiver Cup Podcast
What Has Your Caregiving Journey Taught You About Yourself?
Caregiving transforms us in ways we rarely anticipate. The journey from those first overwhelming days to developing confidence and systems is filled with valuable lessons—if we take time to recognize them.
Have you ever stopped to consider everything you've learned since becoming a caregiver? From mastering nursing skills without formal training to becoming an amateur pharmacist juggling complex medication schedules, the growth is remarkable. This episode explores that learning curve through my recent experience helping my husband navigate a new cancer treatment regimen.
When faced with multiple new medications—each with specific timing requirements, food interactions, and dosing schedules—the potential for confusion is enormous. After watching my mother accidentally overdose on medications because she couldn't track what she'd taken, I knew we needed a system. What emerged was a personalized approach combining visual medication mapping with digital reminders that respected my husband's need to understand what he was taking and why.
The episode also tackles the delicate balance of providing care while preserving your own wellbeing. Taking a few hours for myself during my husband's treatment wasn't abandonment—it was necessary self-preservation that allowed me to return refreshed and better able to support him. These small adjustments can make an enormous difference in sustaining your caregiving journey.
Whether you're new to caregiving or have been at it for years, this episode offers permission to acknowledge your growth, celebrate your adaptability, and continue asking questions when you need help. Remember, when you prioritize filling your own cup, you can show up as your best self for your loved one. What has your caregiving journey taught you about yourself?
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Well, hello, my friend, and welcome to another episode of the Caregiver Cup podcast. It's Kathy here. I hope you are doing well and if you are, just embrace it. If it's a tough season, grant yourself some grace. And just a little reminder here if you haven't joined my email list, you want to click on the link below and get on my email list where I send out weekly email newsletters to you with more tips and tricks besides this podcast episode.
Speaker 1:So let's jump into the episode today. I want to start out by just really asking you a question and I want you to think about when you first became a caregiver, and then I want you to fast forward and compare it to now and I want you to think about what have you learned from the start of your caregiving to now. Some of you, it's maybe just a short stint, but for some of us it's been a long while and it's just something that really is important to think about and what prompted me. I think Heidi last week sent me that email response and talked about our growth as caregivers and it is a learning. It's a constant learning process for us. It's a constant self-growth and development process for us. This might even be a good journaling prompt for you. What have you learned this week as a caregiver? And be a good journaling prompt for you. What have you learned this week as a caregiver? Or what have you learned over the last month as a caregiver? Because there's so much we've learned. Think about it. You're learning different nursing things that, if you are a professional nurse, you probably know these, but if you're like me and have never been in the nursing profession, you've learned different things and ways to watch for your loved one's symptoms or signs. Pharmacy is something that you are thrown into with all of the different medications your loved one may be getting. You're learning communication, listening skills, asking questions, providing feedback, how to handle intense and challenging situations, and I could go on and on. And then also think about what you're learning about yourself. Oh my gosh, it's a constant learn as you go, and I know there's different parts of our lives where we get this all the time. Like being a new parent is a learning process, but caregiving is a learning process as well. It's amazing if you think about it.
Speaker 1:When you started, you probably felt like a fish out of water, or when you're into a new season, even you feeling like you're a fish out of water in most of your caregiving roles, if you think about it. And now you've learned through that experience and you're continuing to go ahead and hone those as you go. And as much as we've learned, we still continue to learn. Right, it's a new drug or a new situation, or a new challenge, or a new situation or a new challenge or a new doctor, whatever it would be and we figure it out in real time. We might be skinning our knees I think that's the saying where you fall on your knees or you're falling down and you have to get back up. You're asking questions, you're embracing your own gut and doing our best. We're doing our best for our loved ones. Last week, like I said, is where I had to ask a lot of questions. I had to embrace my gut and walk through the confusing challenges.
Speaker 1:Let me just share a little bit. You all know my husband's targeted for his stem cell transplant and he's getting an allogenic I think that's how you pronounce it where my son, matt, is going to donate his cells to my husband for his lymphoma and non-Hodgkin's lymphoma and he's been fighting cancer for eight years. He had an autogenic transplant two years ago and now that's where he donated his own stem cells and now he's getting the donor and he's targeted for going and being admitted on the 24th of April. So we're in this six months preparation and kind of cycle here. So now Dennis has finished his last round of this intense chemotherapy treatment and now he's starting a new treatment which is a targeted cancer drug which is going to ensure his chronic lymphoma stays put until his transplant. And then he's taking chemotherapy pills two times daily to keep his non-Hodgkin's in bay. And so this new IV drug that he's getting, like I said, is for Hodgkin's lymphoma and it started last week. Now I'm going to try to pronounce it and I always mess it up and I swear these pharmacies and scientists come up with these new drugs and they have fun making these long, long ones Obentuzumab. It's Obentuzumab, so that's what it's pronounced as.
Speaker 1:And obviously, if you know me, I did a lot of research before they handed out information to us before he signed his consent. But we had a doctor's visit last Thursday which they check his labs to make sure that he's ready. They do a physical exam and then he goes down for treatment and the doctor said he needs to take this one really slow and he wants to do this over two days so it was last Thursday and last Friday Because there's a risk Out of 100 people, there was 10% of the people that had an allergic reaction. This is my research. I've done that and so he wants to take it real slow and he needs 10,000 units I don't know what that means, all I know is the number and so he has to take it over two days. And he said each day of the chemotherapy will be five hours long, and so he also said that he needs to put in a prescription order and the dentist needs to take antiviral and antibacterial drugs, since this treatment compromises his immune system. What it does is it just beats up on his red blood cells and it lowers his platelet counts and makes him more susceptible to everything. So the doctor ordered for us that day, while we were having treatment, there was going to be a nurse that's going to talk about the chemotherapy training process or the treatment process, and then they were going to send the pharmacy down to do some pharmaceutical training on the drugs that he needed. So the doctor's office is on the second floor, so we went back down to the first floor, which is the chemotherapy unit or the infusion unit, which is the chemotherapy unit or the infusion unit, and we walked in and it's kind of like being a caregiver for a while. You know what to expect and your experience, but when there's a new drug you're back to the learning phase again.
Speaker 1:Dennis was extremely nervous because he's had history of having allergic reactions before and he knows that they're going to pump him up with Benadryl which makes him edgy. And so he went down there nervous. But we trust the process, we trust the nurses and we just have to go ahead and go through with it. So the nurses came and we pick out. He gets to pick out his chemotherapy chair and he usually picks out one by a window so he can look out the window. So the nurses sat with us explaining how they were going to do that process today. They would give him steroids and Benadryl. They have to wait 30 minutes and then they hook up his blood pressure cup because that's going to be going off every 15 minutes. And then they were going to give him 10% of the drug, over 10% of that 10,000 units, whatever it is over five hours, and they were going to mix that with just IV fluid.
Speaker 1:And they do that slow because this drug, like I said, has allergic reaction symptoms and they want to monitor them really close. So you know, and my husband knows me, but I ask a lot of questions. I've learned that after about a year into caregiving I ask what allergic symptoms could possibly happen. So I want to know, I want to be able to watch for them. I want Dennis to know that it's not him, it's the drug. And what do you do if they happen? That's my questions, that I asked. And what they do if it happens is they just they slow it down or they turn it off and they wait for 30 minutes to see if the symptoms go away, that kind of thing. But the biggest thing is his blood pressure will go up or he will have slurred vision or whatever. So they went through all of the pieces there Scary, scary stuff. So to make a long story short and I'll kind of get to that piece later but he did wonderful. He did wonderful.
Speaker 1:But once they gave him his Benadryl and steroids, then the pharmacy came down and did their education. They sat by Dennis in his chemotherapy chair with me next to him and they walked through. What they did is they handed us four sheets. Each sheet had the drug that they were getting. So he was getting four drugs. So he got four sheets and each drug on the sheet showed a listing of what the description of the drug was, the dosing, how many he had to take a day, when he had to take them, and further instructions like you can take some with or without food, some you have to take a full glass of water, some you have to avoid dairy products or antacids or whatever. So they went through all of that and on the sheet they also went through the side effects. What the side effects are were the common and the rare. You usually go to the pharmacy and get this booklet. Well, they put it on a nice white sheet of paper and kept it very simple, which is really nice because we could take those home with us and we could look at those again.
Speaker 1:But to be honest, it was quite overwhelming since he's also taking his chemotherapy pills two times a day. He's taking other drugs for his neuropathy, other drugs for his his acid reflux, and he also has anti-nausea meds. So it's so much and we both asked questions, which was really good. Looking at all of the drugs, I said is there any drugs now with his complete list that are going to interact with each other, because I had that happen with my mom and so are there anything that interacts? I know the pharmacies are really good and they, they do that. And they said no. And then I asked what, if there's a reaction, you know what should we do? And obviously stop taking the drugs and call the doctor, that kind of thing. But I also asked that drugs and call the doctor, that kind of thing. But I also asked that. So to fast forward to us going home and then I'll come back again. But the pharmacy guy left and I was so overwhelmed because now he had almost 10 bottles of drugs and can he handle remembering everything? And that's what's going through my mind as I was sitting there before we were going home, because my mom overdosed on her drugs, because she didn't take them at the right time. She forgot that she took some, so then she would take two a day and I kept that in my mind and that lesson learned helped me prepare better for this time around. So fast forward to us going home.
Speaker 1:That day I asked Dennis when we got into the house I said how are you going to remember to take all of these, because I can't treat him like an elderly person because he's my spouse and he's very capable of it. He said I want to just set my alarms on my phone and with the names of the drugs. I said good idea. I said well, let's map out right now on a piece of paper all of your drugs and at what time. On a piece of paper, all of your drugs and at what time. And I'm like before breakfast, after breakfast, midday afternoon, you know all of the ones that he had to take. And we mapped them out on a piece of paper.
Speaker 1:And he questioned why I was mapping them out and I said I'm a visual person and I need to see them, because there's ones that he only takes on Monday, wednesdays and Fridays. There's some that he has to take before a meal, that some of them he has to take on a full stomach. There's some of them he has to take with a full glass of water. All these little instructions, and I wanted to map them out, little instructions, and I wanted to map them out. And once he saw that, he was like I think this is going to work with my alarm. So what we did is we have a spot on the cupboard with all of his drugs and then right next to that we posted that sheet up there.
Speaker 1:So when his alarm goes off, he goes to the counter, he looks at what time his alarm went off and he looks at what drugs he needs and the name of the drug Wyn. It is a Wyn right now because he feels like when they're in the pill bottle he knows what they are and he knows what he's taking. He likes that process, versus my mom didn't like that process. She just wanted the stack of pills and at what time she had to take them. She didn't care about what they were, she just needed to know when, versus my husband needs to know what and when, and so it's just interesting.
Speaker 1:So this it gets me thinking about how caregivers like you and I and other caregivers and the patients, and how they struggle with all of these drugs, especially when they hand them to you all at once with sheets of paper and you're getting your new infusion and you're worried about the allergic reaction and now they're telling you you got to take these home and to take them and you're like your head is just exploded. So I had lunch with my sister yesterday and she had sat. She works for a pharmaceutical company that and she has long term care facility clients where she goes ahead and gets all of their medications prepped and reviewed and works with the pharmacy. And also my sister worked at a long-term care facility an assistant living facility and I asked her have you experienced this before, where people are totally confused and she goes oh my gosh, it is so confusing.
Speaker 1:I said, how do patients and the caregivers figure this all out? Because you get the drugs the drugs I have, you know writing on them and they tell you when to take them and everything. But when you have that many, how do you remember it all? And so she said, hopefully they go home and put it in their pill bottle or hopefully they have a caregiver, hopefully they go home and put it in their pill bottle or hopefully they have a caregiver. But she said, if you're struggling, don't leave until you feel confident, knowing that you can figure it out. So the pharmacist can sit with you and write out a map. The nurse at the doctor's office can create a map for you. You can go ahead and get a pill box or a pill packet where you punch them out if they're going to be ongoing meds so you can go ahead and figure those out. So my sister talked about all of this and really worked through it and so if you're sitting at home and you're just frustrating with all of the drugs and you don't know what's happening, it might be a good idea to sit down and have a discussion with your loved one, or go to the pharmacy and have them help you, or talk to the nurse to see if somebody can sit down with you and map them out, to see if somebody can sit down with you and map them out.
Speaker 1:Now, after we got done with the treatment instructions, the pharmacy and then they started his treatment and about an hour after it our nurse navigator came by and asked us how we were doing. Did we have any questions regarding the drugs or his treatment today? And I shared that this was really overwhelming with her and she said do you have any questions? And so it just opened up some conversations to say I don't really have any questions right now, but this is overwhelming, this is a lot to take in. I told her I didn't understand what this 10,000 unit was and you know the new drug cancer therapy drug. So she spent a little time saying it over again, which was really nice for us to understand. And then she left the window open to say just if you have any questions, don't hesitate to ask. So don't hesitate to look at other opportunities where you can go ahead and recheck in, call the doctor, talk to a nurse again, so that you can do that. I've learned that over and over again to go ahead and just continue to share your thoughts and feelings and ask questions.
Speaker 1:So Dennis had a good day one night, you know, with just some minor symptoms. So we were off in the morning to day two, and day two in the morning was, I think, at the same time, he'd be there at like eight o'clock or 810 or something like that. And I had discussion with him that night to say how about if we, how about if I drop you off? Because I've learned that sitting for five hours each day drains me and it affects my mental health and I get edgy and frustrated and all that kind of stuff. And we've had open discussions about that. And so I said, since you tolerated it well the first day, since you tolerated it well the first day, how about if I go ahead and drop you off and come back a little bit later and he was 100% on board with that and was perfectly okay. And I think it depends on your loved one. With my mom I could have never did that, but for Dennis I could.
Speaker 1:And so we got up in the morning and I told Dennis you go ahead and eat your breakfast and get ready and just kind of relax the morning. I walk the dogs in the morning, and then the dogs were really excited because we drove Dennis to his appointment. We dropped him off at the door, I told him text me when you get in your spot and give me some progress updates and then also give the nurse my number. And so he did all of that. So I went back home and I was able to throw in a load of wash, I did some cleaning of the house, I showered, cleaning of the house, I showered, and then he wanted a Jimmy John's sub, and so I picked up each of us a sub, and then I brought it back at about 11 o'clock.
Speaker 1:It was just the perfect time for me to just be away for a few hours, and so then I it was about 11, 15 or so I walked in the door and he was sitting there. The nurse came over right away because she saw that I came back and said he was doing really good and it gave him some time to. I think he downloaded some movies to watch and he was able to rest a little bit as well and then he got to eat a little bit and really this helped both of our well-beings and I've learned that it's okay to go ahead and and while they're being cared for, you can go ahead and care for yourself at the same time, and I was just a phone call away and so I could have bopped back in the car and been there in 20, 25 minutes and been right there by his side if I needed to. So these are kind of the things that I went through last week to go ahead and learn from you, learn through your experiences. You learn as you go and it's a nonstop learning experience. So I want to just close up today in hopes that you got something out of this.
Speaker 1:I didn't know I was walking this morning going. Would this be enough for all of my caregivers listening and for you listening, to go ahead and just glean some tips and insights out of this, because caring for a loved one does not mean that you have to do it 24-7. You know, you have to find these little pieces of breaks, like I did on day two, and then also pieces of breaks, like I did on day two, and then also because your loved one is going into new seasons, or when they go into new seasons and stressful, you have to also learn to go ahead and adjust and adapt and realize that I'm in new territory. And then I have to ask questions. So I hope this helped. I'm rambling on. Thank you for being here and sharing in my moments today of vulnerability and growth with me.
Speaker 1:You know, as I wrap up this episode, remember that each day for you brings new opportunities to learn and to take care of yourself.
Speaker 1:Even while we care so deeply for others, we also have to care for ourself.
Speaker 1:We've all been there navigating through those overwhelming information, balancing complex treatment plans or inpatient plans, whatever it would be, and finding a creative solution, like for me it was mapping out medications last week, or my husband's idea of setting reminders on his phone.
Speaker 1:Keep asking questions, my friend, keep leaning on one another and, most importantly, keep nurturing your own well-being. And I'm going to go back to the keep leaning on one another and you also want to find out who your partners are, if you have a favorite pharmacist, or if you have a favorite nurse, or who that person is, and keep tapping into it. So until next time, my friend, let's embrace this journey together the good, the bad, the ugly, one step at a time. Embrace the good, discover what you've learned from the challenges and move forward. So I'm hoping this kept you inspired. And until next time, my friend, take care and remember you are doing the best you can for your loved one and when you fill your cup first, you can show up as your best self. So until next time, have a good rest of the week and bye for now.