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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
Empowering Caregivers: Advocacy, Education, and Navigating Challenges
In this enlightening episode of The Caregiver Cup Podcast, we explore the essential role of advocacy in the caregiving journey. Understanding how to effectively advocate for your loved one can transform both the quality of care they receive and your own well-being as a caregiver. Drawing inspiration from Barbara Corcoran’s heartfelt experience in episode 233, where she emphasized the importance of education after her mom was diagnosed with Alzheimer’s, we dive deep into the four key components of caregiver advocacy.
This week, we focus on education—the foundational pillar of effective advocacy. Learn how educating yourself about your loved one’s condition, mastering caregiving techniques, understanding legal considerations, and recognizing the emotional and environmental needs can empower you to make informed decisions and navigate the healthcare system with confidence. Through personal stories, practical tips, and expert insights, discover how continuous learning and building a supportive care team can prevent common caregiving mistakes and enhance your ability to advocate successfully.
Whether you’re new to caregiving or seeking to strengthen your advocacy skills, this episode offers valuable strategies to help you show up as your best self. Don’t miss out on actionable advice and heartfelt stories that will inspire and support you on your caregiving journey. For a more detailed discussion and additional resources, be sure to visit our blog at www.cathylvan.com/blog/236. Tune in and empower yourself to make a meaningful difference in the lives of those you care for.
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Well, hello, my friend, and welcome to another episode of the Caregiver Cup podcast. It's Kathy here. Oh, we're going to talk about a really good topic today. We're diving into the topic that is at the heart of every caregiver's journey and one of our main responsibilities, which is advocacy. It's one that I think that we jump into and we try to figure it out, but today I want to talk a little bit about that.
Speaker 1:Before we get started today, I just want to give a huge shout out and thank you to everybody that's responding to my emails. If you are not on my email list, go to kathielvancom and scroll right down to the bottom and you can join my email list, because each Tuesday, I send out just a reminder that the episode is live and it just kind of gives you a little bio of the episode, which sometimes helps people if they want to listen or not listen, based on the topic. And then on Friday, I do try to do something personal. I call it my newsletter, because it's multiple things that I share, like this week I shared some of the quote and I shared some of the things I'm working on from my website and so on, and I love getting the responses back, especially the one this past week where I said my husband tried to kill me. He put Dawn dish soap into a frying pan and left it out and I thought he just used it and I was going to use it again because he fried up some eggs and I thought, well, I'm going to use it now and make my eggs. Well, little did I know. He put that Dawn spray stuff in the pan and didn't rinse it off or didn't put it in the rack. And I'm like, oh my gosh, I've never eaten soap as a kid or never was punished by putting soap in my mouth. And thank you, I think Kathy. No, it was Katie, I don't remember if it was Katie or Kathy. One of you had said eat chocolate. Yes, I did eat chocolate, and that seemed to cut the edge off. So thank you.
Speaker 1:Also, a reminder that we have that text message link in the show notes. It's right at the top, and so if there's something that resonates with you in the podcast episode that you're listening to, I'd love to hear from you. Or if you have a suggestion or a question, don't hesitate to reach out Now. I don't get your text. I don't get your phone numbers. The platform that we use is called FanMail, and so what happens? There is, the FanMail technology only shows the last four digits of your phone number and your location of where the phone was purchased from, and so it may be in the same city and state, or maybe, if you moved across country, it could show the place that you originally bought it from, but that just gives me an idea of that. It is somebody in our community, but I have no idea who you're at. So if you want me to know, just sign your name and say hey, it's so-and-so, and this is my comment, or this is my question, or this is my feedback. I love getting them. They actually pop up on my phone and I can't wait to open them up all the time.
Speaker 1:Okay, let's get into the episode. Today, there are actually four main components of advocacy for your loved one as a caregiver, and in this episode, we're going to talk on the foundational one, which is education, and we're going to talk about how important it is to stay educated or become educated when you become a caregiver, and it's not just an easy word. However, I'm reminded of this because in our conversation with Barbara Corcoran back in episode 233, which was October 1st of this year, 2024, we aired Barbara's interview that I had with her regarding her mom's diagnosis of Alzheimer's and then how it turned to the agitation side of Alzheimer's, and I asked Barbara questions throughout. But she quickly helped. Barbara quickly realized how critical education was in navigating the caregiver process. If you remember, her brother noticed it first when her mom was taking care of her brother. But her mom was getting forgetful and memory loss was setting in and her brother then decided to go ahead and do some research and take a course and he finally figured out that I think she has Alzheimer's. And in fact, when I asked Barbara what was one of the key advices she would give a new caregiver, the first thing that came out of her mouth was educate yourself. And it is. It's an easy statement to make, but it is so.
Speaker 1:There's so many different levels of educating yourself, but this one really stuck with me because whether you're brand new to caregiving or you're a seasoned caregiver looking to strengthen your advocacy skills and understanding that this is a foundational piece is going to be an important piece. Not only is education. I'll give you the other three so you kind of know what they are and in my Empowerful Caregiver School and in future episodes I probably will be talking about this, but in the Powerful Caregiver School we talk about all four. So envision like a pyramid or a house. The foundation is education and then from there it builds up into oh my gosh, I had them written down, I have to find them. It's education, and then understanding and communicating and listening. So that whole communication piece is important. Then on top of that it's teams and partners, and we're going to talk about that a little bit and then it's also educating what your needs are. So those are the four pieces, but getting back, because I feel like a squirrel that just ran off into different things, but Barbara had talked about educating yourself. Like I said, that really stuck with me.
Speaker 1:But understanding the four key areas of advocacy can make a significant difference, not only in the quality of your loved one's care that they receive, but also in how you show up as your best self. And, like I said, education is the first key component. And I want to pull a quote from Oprah Winfrey because she says the greatest discovery of all time is that a person can change their future by merely changing their attitude. And you're saying well, how does this relate to advocacy? This quote resonates so much with what we're talking about today, because when caregivers embrace education and all the knowledge that we have to kind of learn as we go, you're empowering yourself to make informed decisions and take control of your caregiving journey, because that's definitely the key piece.
Speaker 1:But before we dive in, I want to talk about the biggest mistakes many caregivers make, including myself when it came to advocacy. And I want to talk about these because, if we can stay in front of these or realizing that we're going down that mistake journey, we can go ahead and detour and turn back. The first mistake is assuming we'll figure it all out. Well, we often assume we'll figure it out as we go or that the doctor will guide us through everything. While doctors are incredible resources, they see 100s and 100s and 100s of patients each week, and just think about how many they see in a month. The more equipped you are with knowledge, the better you can advocate for the best possible care for your loved one. I'll tell you this Today, right before I'm recording it. I'm recording this.
Speaker 1:On Monday, right before we recorded this, dennis called and said my PET scan results are back and there show significant metastasizing areas that are showing up in his PET scan, and so they're reading. The radiological pieces are quite overwhelming, but they seem better now as I'm going into. What is it? This is the end of the seventh year, now we're going into the eighth year, and so when I sit down tonight I'm going to break all those pieces apart on that PET scan and I'm going to go ahead and if I don't know the answer, I'll go ahead and research it, or I don't know what it means, I'll research it and then, underneath it, I'm going to write down my questions and so I learned that along the way, versus just letting it saying, okay, we'll just wait and see what the doctor has to say. No, I'm going to go in with questions. Dennis and I will talk about the questions we're going to ask and then we'll move forward with that. That's just one example. I'm not going to assume and let them figure it out.
Speaker 1:Another mistake is relying solely on the internet, and I am so bad at this because there's belief that Google, youtube or the internet has all the answers right. While the internet can be a helpful starting point, it can also be full of misinformation and misleading advice. Want to know what I usually Google, and this is probably something we do under the cuff, too, is life expectancy. What are the worst case scenarios? That kind of thing? You need to be able to sift through the noise and find credible and reliable resources. And when we start talking about this in the episode today, one of the advices one of the nurse navigators gave me is you can go out and research, but these are the resources that you want to research under, like the American Cancer Association, cleveland Clinic, mayo Clinic. You know those pieces because those are reliable resources, not feedback that somebody else is putting out there, that you know you don't have any proof of.
Speaker 1:And the last mistake is trying to do it all yourself, trying to do it all alone. The most common misconception of all of the beliefs that you can do is all by yourself. Caregiving is not a one-person job. Building a supportive team and collaborating with others will ensure your loved one receives the best possible care, and we don't even have to talk about it, but it'll prevent you from burnout. So today we're going to jump into the first key step in caregiving advocacy, which is educating yourself. Trust me, this one is worth taking notes on. But if you're in the middle of your caregiving day, like doing dishes or driving or showering or taking a walk and you can't jot things down. Don't worry, I got your back. You can grab the blog post. Every episode I create a blog post with the notes that I talk about and you can go out to kathielvancom forward slash blog and this episode is 236. And I'll have this in the show notes so you can go and grab some of the key points, some of the questions that I'm going to go ahead and go through, so that you can go back and revisit this now or when you need it the most.
Speaker 1:So let's get started with educating yourself. First of all, being well-informed is the foundation of effective advocacy. It enables you to make informed decisions, understanding the medical terminology and navigating the healthcare system confidently. And navigating the healthcare system confidently I feel like I have like a medical assistance degree already from all of the things that I've gone through. But you have to go ahead and understand and when the doctor says something, you either have to go ahead and make note of the term and research it or ask them right away. We heard that Barbara Corcoran in episode 233 as one of the pieces of advice, like I just said, for new caregivers. When I say educating yourself. Here's what I mean and I'm going to go through. I think it is four different points that you want to consider when educating yourself, the first one being understanding the disease or the injury that your loved one is going through. You want to learn about the medical condition affecting your loved one, thinking about the symptoms, the progression, all of the treatment options. You want to be educated on that and I feel like the initial diagnosis. When they get it, you go to the source and you start going ahead and saying you know, I need to get up to speed on this and really learn a lot about it.
Speaker 1:I go back to back in 2017, when Dennis first realized he had the lumps underneath his arms and his neck and in his groin. He went to his regular doctor and the regular doctor knew right away when he did his physical exam and got the blood work back, that he needed to go to an oncologist immediately. Within three hours, we were in an oncology office and we went to this oncologist, which we didn't stay with. They talked so over our head. There were two doctors in there talking hematology terms. They were talking oncology terms that I had no idea. First of all, you're in shock. You don't know what's happening. And then they're talking about the origin. They're talking about you know, they were talking about fish tests.
Speaker 1:I had no idea what all of this was. I understand it today, but I didn't. It was so over our head. So I started after that initial piece head. So I started after that initial piece. I started Googling everything and I was even more confused. Then I connected with a friend and they got us into a different oncologist and when we had the oncology appointment the following day which I think it was a Monday, because we first were diagnosed on a Friday or he was I walked in and I told them I was so overwhelmed and the nurse navigator said to me I'm going to go ahead and print you off some handouts and some documentation.
Speaker 1:And she wrote down on the back of the sheets. These are the three places I want you to go ahead and educate yourself, and it was such a relief to go ahead and saying I don't know what I don't know and it's so confusing. So being able to educate yourself. And so that's the first one, on the disease or the injury. The second one is educating yourself on the caregiver situation, and what I mean is familiarizing yourself with the caregiving techniques that you need to do all of the legal considerations and available resources. Now that you know what the diagnosis and the disease is, you have to really familiarize yourself with what's going to happen and really get a good grasp on that. So this all means being well-versed in the caregiving techniques. Help you provide better care for your loved one and handle different situations with confidence.
Speaker 1:You have to go in like you're starting a new job almost and you are a newbie in your new job, which really helped us because the binder covered things like what does the chemotherapy drugs? What are the side effects, how do they administer them. They went through the whole process. They went through the process of how we were going to come in each each time and get lab work. So they got into all of that. But then they got into, like Dennis, what he's going to feel like when he got home and what should he eat, even things like when he was taking this really strong chemotherapy drug. They advised that he flushed twice, because we didn't want to. I didn't want to get any on my skin or anything that I would be exposed to. So they went through A to Z and everything and we had this nice binder to look at.
Speaker 1:Another thing in your caregiving situation is thinking about personal care for your loved one learning how to assist them with daily activities like bathing and dressing and feeding, and mobility, depending on your situation. For instance, learning how to safely transfer somebody from a bed to a wheelchair if they had hip surgery or if they had knee surgery, so that you can prevent them from getting hurt both yourself and your loved one and being able to go ahead and do that. So you want to think about what are their everyday needs and how do I take care of them in your situation. Then you also want to think about the medication and the management understanding how to administer medication correctly at home or taking care of it, how to track the dosages, how to recognize the possible side effects. So you get those handouts when you go to the pharmacy and I usually toss them, if it's me, because the doctors told me, but for a caregiver, I find it really helpful to keep them because if a side effect pops up, then you can look at that. Or if you know the drugs, you can also Google it because it'll tell you that. And using tools for the medication, do you have a pill organizer, a tracking app to tell you what time, whatever it would be, so you can stay on top of it. When we were doing home hospice care, the nurse went through all of the medication for my mom, but I also tracked it and so when things would get hectic or I knew I was going to be tired, I would know when I gave the last dosage and what time. So if they came in and my mom was having difficulty, I could say, well, I just gave her the medication 30 minutes ago and then they would be able to assess and do that.
Speaker 1:Another thing is wound care and medical procedures. If your loved one has wounds or needs medical devices like feeding tubes or catheters or whatever it would be, learning the proper techniques to care for these can reduce infection and complications. Many hospitals or care teams offer training for that. Family caregiver or maybe it's something that you have a nurse coming in being able to understand what do I have to do and then being able to assess your capabilities of doing that. Another thing to think about is mobility support of doing that. Another thing to think about is mobility support. Techniques like helping you with walking aids or using assistant devices such as a walker or lifts can keep your loved one mobile and safe. My sister had to teach me how to use the gait belt, because I never knew how to use the gait belt with my dad and I knew how to put it on, but I wasn't using it properly for myself, you know, and she had to go ahead and teach me how to go ahead and use that.
Speaker 1:Thinking about you want to learn fall prevention techniques is also essentially, particularly with aging and frail individuals Even things like you know do you have rugs? Do you have to remove rugs in the home? Do you have to move their favorite coffee table because that's going to be in the way? Do you have a? The lazy boys with the lift chairs are amazing and so helpful. You know just things like that. If your loved one is dealing with dementia or Alzheimer's, you want to think about understanding communication techniques and managing their agitation. We talked a lot about that in that episode with Barbara. With being able to meet them where they're at or implementing memory care strategies can help you reduce your stress, for both the caregiver and your loved ones. Remember, it's a constant learning process and so having the questions written down, talking to your team is going to go ahead and help you.
Speaker 1:Talking about'm talking about your loved one's healthcare team. Now, the things that I never thought about, but they're obvious is legal things like navigating the legal aspects of caregiving both you and your loved one. Do you have access to their doctors and can you speak directly to your doctor? Remember, there's HIPAA laws and so you want to do that. Do you have power of attorney over their medical and I don't know if I'm pronouncing it right, but the POA? It's essential to have the appropriate legal authority to make decisions on your loved one's behalf, especially regarding healthcare and financial matters. And if you have a good healthcare team, they're probably going to go ahead and have you update that or fill that out, and it will help because you want to be able to go ahead and talk directly with the medical team for your loved one if they need that. Or how are you going to communicate? Can you ask questions? Do you have to have your loved one there? You want to make that as seamless as possible and unfortunately, we have to talk about advanced directives. To familiarize yourself with your loved one's advanced health directive, such as do they have a living will which outlines their preference for medical treatment, like the DNR and do they have a DNR? What are their wishes for if they would have to go ahead and have a tube or feeding tube put in? Do they want that? Do they want, you know, to be resuscitated? All those things.
Speaker 1:Also thinking about guardianship or conservatorship you want to think about that. Also want to think about insurance and their benefits, understanding what their Medicare covers. Do they have Medicaid? Do you know their private coverage, insurance coverage? Do they give you permission to speak directly with your insurance? And do they cover in-home care, medical equipment, respite care, knowing all of the ins and outs of that and not relying just on the doctor's office to go ahead and just process the claim. One of the first things I did with Dennis is they had a financial I can't remember, I think a consultant or an advisor and I met with her to say, okay, how do I do all this? Because now we're talking, you know intense care and chronic treatments, and she talked about all of that. And then I asked her was there any assistance or grants as well for anything out of pocket? So it's being in front of there.
Speaker 1:And then the last piece of the caregiving situation underneath the education is your rights as a caregiver you want to think about. If you are balancing a job and caregiving, you may be entitled to certain protections, like FMLA, which is Family and Medical League Act. So you want to check into that. If you are working, what does your company offer? What does your state regulate? What are the regulations when that is without risking your job loss? Because if you are caregiving, there's going to be time where you're going to need to take off. And just this is just my personal advice take it or leave it. Just don't allow your boss to say, oh, just take off when you need to. I know you'll make up your time. Make sure you're CYAing and covering covering your butt for that. So those are the things. Okay, underneath, education as well is one that we don't think about a lot, but I want you to look at your loved one's mood and environment, recognize how your loved one's emotional state and surroundings impact their well-being and just have some good conversations, especially at the beginning, like when I was with Dennis.
Speaker 1:When you, the day after chemotherapy, or when you're not feeling good, do you want me to leave you alone or do you want me to spend time with you? How do you like it? Because I'm the type of person. When I am sick, I shut the door in my bedroom and I don't want anybody to talk to me. I don't want anybody to come near me, I just want to sleep With my husband. He loves to sit on his lazy boy. He likes to watch his movies Bang Theory over and over and over again, or Law and Order reruns whatever he watches. He watches those over and over. But he does not want me to say how are you doing? Are you feeling? Okay, he hates that. And so I would just walk down there and on occasion I'd say, can I get you anything? And he would say, nope, I'm good, or whatever it would be, and I kind of let him alone. But he wanted to be out, where everything was moving around him and just in his lazy boy. But when it came to my dad and when he went through chemotherapy, he was like me. All he wanted to do was sleep and he would get upset like irate upset. When people would ask him how he's feeling, he would be like how do you think I'm feeling? So you want to talk about that?
Speaker 1:Emotions play a significant role in your loved one's physical and mental health. You know. Do they want guests? Do they not want guests? My dad did not want guests. My mom, on the flip side, she wanted family by her, even when she was sick.
Speaker 1:Recognize, though you want to recognize signs of distress and anxiety and depression and agitation, and recognize those and have discussion with your loved one, or have discussion with the medical team, so that your goal is to enhance their well-being and their overall caregiving experience, because when they're moody and when they're down, what happens to you? Yeah, it's the same thing, and you can't always fix that. But you can play with the environment, you can play with the things you can control. So recognize their emotional cues, their behavior changes. Are they withdrawing for social activities? Are they irritable? Do they have sudden mood swings? Is there a pattern? And with Dennis, I knew when it was. It was the week after his chemotherapy and then after that he was better again.
Speaker 1:Pay attention to their verbal expressions and like I'm tired, I don't want this. That kind of thing, or nothing makes me happy, can indicate emotional distress. Pay attention to their body language or nonverbal signals. Are they slouched over in their posture? Do they have lack of eye content? Are they having restless movements? Yeah, pay attention to that and make note of that. You know what you want to do is manage the emotional well-being, like active listening and creating that space and really looking at. Could I get them help we for a while there oh gosh, this had to be in 2019. Dennis went on anti-anxiety medicine during one of his chemotherapy stints because he just could not get rid of the panic and anxiety and that helped for a while. He also. We also talked to different people so that, like therapy and counseling, so he could get through it.
Speaker 1:Now another thing if your person is an extrovert and all of a sudden their loved one is an extrovert and now all of a sudden they have to stay home and they're isolated and sick, now you might want to promote social interaction. I think I've shared this before when my husband had his knee surgery. I think I've shared this before when my husband had his knee surgery. You know he was getting bored, sitting all the time and doing his therapy. But my husband's an extrovert and so I texted some of his friends and saying hey, if you have some time, let me know. When it's good, you can come over and visit and I will go for a walk or I'll go run some errands. He is mood changed remarkably. Now also thinking about how could you engage in enjoyable activities. Maybe your loved one loves to play cards, or maybe they like to garden or walk. You could go ahead and incorporate that. Even if you have to go ahead and push the wheelchair around the block, you could go ahead and incorporate that, even if you have to go ahead and push the wheelchair around the block, getting them out or going for a ride in the car, that could help wonders.
Speaker 1:Here's a case study example of Anna and she is caring for her husband who has been diagnosed with depression following his diagnosis with a chronic illness. Initially she noticed that he became withdrawn and less communicative. Anna started dedicating time each day to talk openly about his feelings and encouraging him to join a support group and arranging regular visits with close friends. Over time, these talks helped because it improved his mood and fostered a more positive outlook. And when I talked to Anna, she had said you know, her husband didn't want to impose on having her trying to drive him to go visit friends or going somewhere outside. He knew that she was strapped. But you know what? That was what Anna wanted. She wanted him to go ahead and get out there and talk about it. Okay.
Speaker 1:So now the last piece of educating that I want to talk about in the fourth component is a care team and personal needs. Am I lying? Is there one more? Okay, I think that's it. I might be lying. No, I think that's it. I'm looking, I have them in pink so I can see the four components.
Speaker 1:So the fourth component is care team and personal needs. Know the roles of each family member and you want to build a care team and you really want to know and assess your own needs and limitations. Like I said earlier, caregiving isn't a one-person job, and building a supportive and collaborative team allows you to delegate responsibilities, share the emotional load and ensure your loved one is receiving the best possible care. At the same time, it's crucial to recognize your limitations and make sure your personal needs are being met to avoid your burnout and I know what you're thinking I don't have anybody. But let's be open to this, because when you understand what the word team means, you're going to go ahead and say, yeah, I do already have people on my team, but I can go ahead and grow it even more.
Speaker 1:Effective caregiving often requires a collaborative effort from a diverse team of professionals, family members, friends, community resources and more. Understanding the roles of each team member and recognizing your own needs and limitations are essential to go ahead and maintain a somewhat of a balanced and sustainable caregiving routine, and this ensures your loved one receives the comprehensive care. They can go ahead and see other people and it brings just a different flair to your caregiving world. And so let's break this down and really understanding who's on your team, and I encourage you, if you are listening to this right now, I want you to think about who's on your team, write it down if you have a chance. Who are the immediate family members that are part of your team, whether they're there or they're afar? Do you have any spouses, any siblings, any children that could provide daily support, emotional care, financial care, research care, whatever it would be? If you have somebody that's across the country, well, they can't provide the physical care, but they may be able to do some of the legwork for you with the insurance companies, or they may be able to go ahead and help financially or looking at you know devices, whatever it would be.
Speaker 1:There's things for everybody to do On your team. You have your loved ones healthcare professionals, the doctors, the nurses. Think about your pharmacist, the therapist, if they're getting physical occupational therapy, whatever type of therapy, a specialist who manages medical treatments and rehab. If you think about it, find all the resources in the doctor's offices. Like I said for the cancer one, we had the financial, we had the social workers, we had the nurse navigators. Even we had the physical masseuses coming down during the chemotherapy and Dennis at first didn't like that, but at the time we were able to. He was able to go ahead and get a shoulder massage, but then we were able to talk to her about well, when he gets home he sometimes has cramps in his legs. Is there any suggestions? So, thinking about her or him as a resource.
Speaker 1:You also have support staff, whether it's paid, whether it's state funded, whether you have insurance, covers it or not. Think about home health aides, personal care assistants, respite caregivers, anybody that can assist with daily activities or provide temporary relief. I mean you could get a home nurse coming in that could go ahead and do the cooking and the cleaning and helping with the bathing, whatever it would be. What support staff could you find? You also have social workers and case managers.
Speaker 1:Don't forget to look in your community, your county, your state to see if there are anything available for you, professionals that can help you navigate healthcare systems. Offer resources, access to resources, coordinate services. If you need devices, you need somebody to do an assessment of your home. Find out if there's resources available to do that. To find out, you know I need a ramp for my front of my home, and how do I go ahead and access that? Is there any funding for that? Also, look at your community resources, like neighbors or volunteers, religious groups, nonprofit organizations that offer additional support and assistance. It could be something as simple as I can't get the leaves raked in the fall this year because I am working my full-time job. I'm taking my husband to chemotherapy, my kids are not in the city that I'm in. There are nonprofit organizations or religious groups that would gladly come and do stuff like that. So, reaching out and looking, there are neighbors and volunteers that want to help, and maybe it's dropping off a meal, maybe it's helping driving your loved one to an appointment. So think about that.
Speaker 1:Also, your team could be non-person. It could be technology, an automatic reminder to go ahead and do the drugs, to do the prescription drugs or give your loved one prescription drugs. It could be a care management app that goes ahead and helps you through, or a telehealth service that facilitates communication and organizations. So, thinking about what technology, I even think about it, as I can go ahead and order my groceries online and pick them up in this hard time, I can go ahead and use a service to go ahead and help me monitor all of his symptoms, and when I go to the doctor, they already have that, because my husband has this app that the doctor's offices have. We all have that, so could we put the information in there ahead of time so the doctor has access to that when we come to visit?
Speaker 1:Another thing to think about is the roles of each member, and I kind of got into that a little bit. Are you going to be the central coordinator, who manages the daily care communication with other team members and ensures your loved one needs are met? Are you that person, or are you going to go ahead and share it with somebody else? The physicians and specialists are on your team. The nurses are on your team. The pharmacists are on your team.
Speaker 1:I think I talked about all of these. The home health care needs volunteer. So I want you to think about who's on your team and then define what those roles are and then define what those roles are. You also want to build and manage a care team and identify the needs, assess the special needs of your loved one to determine which professionals and resources are necessary for them, because you may need to go ahead and pull in a physical therapist for your loved one if they're experiencing issues now with something else. You may need to go ahead and meet up with the PA or the physician's assistants in between regular visits. You also want to think about communicating clearly and ensuring that all of your team members are aware of everyone's roles and responsibilities.
Speaker 1:I go in and especially when I was caregiving for my mom, I would go into her doctor and say I'm the primary caregiver, but you're going to also see my siblings. John is my backup, which will take her to appointments and which will go ahead and take care of her. That way, connie works every day, but she goes ahead and assesses and looks at all of the notes and she may come to you with questions, being able to go ahead and communicate that and then vice versa, how are your members getting their information? When dennis was in his stem cell transplant for six weeks, I was also managing the household. I was managing my mom's caregiving care and so how was? I had like sub teams of people taking care of things, but then we had one channel with daily updates on how dennis was so being able to go ahead and ensure that the team members are aware of the roles and responsibilities, having check-ins with them.
Speaker 1:What form of things Do you want to have a meeting? Do you want to have a text chain? Do you want to have a Facebook page? You could also utilize CareZone or CaringBridge or lots of helping hands, whatever it would be, so that you could go ahead and do that. And that's a nice way to say oops, I forgot about this. The furnace man needs to come in and do their maintenance check. Can somebody come to my house and sit while they do the maintenance check? It's just silly things like that, but when you put something out there, people are willing to help and communicate.
Speaker 1:You also want to think about fostering collaboration. You want to encourage an open dialogue and collaboration among team members to create a cohesive support system, and when you're open to people asking questions or highlighting and giving feedback, you can say that you could say like mom is experiencing this and I don't know what to do anymore and she's not, you know, communicating. By putting my brother and sister's heads together, we were able to talk and then being able to go ahead and saying, okay, let's try this first, but also let's go ahead and communicate with the doctor, and eventually that's how we got the hospice care going and being able to do that. Another component is what I haven't really talked about a lot yet is assessing your own needs and limitations, because part of your team is if, especially if you are the caregiver, you have to be also aware and communicating that I can't do this 24-7. I have to go ahead and get breaks off and on, and so this is going to require you to go ahead and self-reflect and evaluate your physical, emotional and mental health.
Speaker 1:You're going to have to identify signs of stress, fatigue or burnout and really saying and being open to your loved ones and setting healthy boundaries, and not only to your loved ones but to your team to say, okay, saturday is Kathy's day off or this is the weekend I take off and we rotate this weekend, whatever it would be. So you're going to have to learn to say no or delegate to other people when necessary and prioritize tasks to focus on what's important, and no might not mean saying no, I can't be there. No might be saying no, I can't be there. No might be saying no, I can't clean the house anymore Because I have all of these other things, or no, I can't rake the leaves, or no, I'm not going to be able to make this appointment because of work, and I'm going to throw it out. To like, for example, with my mom, we had my siblings and we had the grandchildren. We had neighbors and I can't tell you how many times the neighbors took my mom to her hair appointment. I can't tell you how many times the grandchildren came over and had a meal with grandma and brought over a meal with grandma so that I could go ahead and take care of my husband at home and get a break. So, being able to set boundaries and being able to do that, having a calendar to say here's the highlights that we need help with If anybody can go ahead and fill in some of these, that would be greatly appreciated. You can also seek support, connect with social groups, counseling service me as your caregiver, coach or a trusted friend or family to share your experiences and talk about what you're feeling. What do you need from an emotional support perspective, because you have that too and being able to recognize when you need breaks, when you're fatigued. And, importantly too, you need to maintain some joy, meaning hobbies or exercise or activities and relaxation to go ahead and refill you. So I have another one.
Speaker 1:Her name is Lisa and she's caring for her husband as well, who has advanced Parkinson's disease. Her care team involved a neurologist, a home health care nurse, physical therapist, a social worker and her. I have home health and a home health care aide, and so Lisa's primary goal was she was the primary caregiver. She scheduled and attended all the medical appointments, communicated updates to her team and ensured that her husband's medication schedule is followed Right, and she would hold monthly meetings with her care team to discuss her husband's progress and adjusted the care plan as needed. And she used that because when she had her neurologist, she used her neurologist like her neurologist advocate, which is a nurse, and she had the physical therapist together. She had the home health care company and the social worker. They all facilitated together and she brought them together and everybody talked about what their issues were. Lisa utilized what was called CareZone to track medications, appointments and to share information with all the team members, ensuring everyone was on the same page with all the team members, ensuring everyone was on the same page. Lisa set aside time each week for her own self-care activities, such as yoga and meeting with her local support group. She used me for a little bit from a caregiving coach perspective and it helped her manager stress and prevent burnout. So the outcome was she effectively started managing her team, prioritizing her own self-care needs, and she actually felt like the care was even better. The care was better. Everybody knew what everybody was doing and when the neurologist noticed that there was something going on, they could communicate to the physical therapist, they could communicate to the home health care team. Everybody was able to see everything and knew where everybody was at.
Speaker 1:Another person that I worked with was Mary, and she was the primary caregiver for her elderly mom with dementia. She worked full time and she was feeling overwhelmed by dual responsibilities. Work full time and she was feeling overwhelmed by dual responsibilities. Mary enlisted the help of her sister and neighbors to assist with the daily tasks such as grocery shopping and meal preparation, and just helping with that while she was working. She arranged for respite care several services once a week to give herself a break and attend her job without worry. So she had all of that coordinated. Mary joined an online support group to share her experiences and when we talked, she also had me as a caregiver coach to help with some of those logistical things and efficiencies, and she received advice from others in similar situations. She was so open to all of it. But she was also struggling with how to do it all. Once she communicated her limitations to her family, to her team, ensuring that responsibilities are shared and no one person was overburdened, she found balance with her work and her caregiving responsibilities. She felt like she was having better quality time with her loved ones. She felt like she had friends on her team. The stress levels went down and her mom seemed like she was doing better versus when she was trying to go ahead and juggle it all. I remember at one time she was trying to work at the kitchen table with her mom with dementia and trying to be on calls and meetings and her mom would be wandering and it was just too much to bear.
Speaker 1:So some practical tips for you is map out your care team. I talked about this already. I want you to create a like a visual chart, like just draw a line in the middle of your paper and write the team members on one side and on the other side, outline their goals and every time you think of oh, that person's on my team, oh, that person's on your team, you start thinking like the manager, the boss, the CEO of this and figure out what you want to do to keep everybody updated. It could require regular meetings, especially with your family members, where you get together and you have coffee together and you talk about it. It could be an app or a way of communicating. Use these meetings to make sure you're sharing what's working, what's not working, what could we try? What do we have to go ahead and talk to the medical team about Whatever it would be? Think about using care management tools, especially if you want to communicate to deeper into family and friends, like CareZone or Caring Bridge or a Facebook group where you don't have to keep answering individual texts or you know what's going on. I loved it when I could go ahead and saying these are the dates and times that I need help with. Mom and the grandchildren would see that and they would just fill in the blanks. It was so nice.
Speaker 1:Also thinking about I want you to think about prioritizing your self-care. I want you to get a calendar and saying I'm going to commit to whatever you want to commit to. Is it once a week? Is it twice a week? Is it daily that you're going to go for a walk? I want you to commit to it. Are you going to take respite care one weekend every month? I want you to figure this out, think about what the ideal state would be and work towards it I can help you with that too and then set realistic goals about achieving these for your personal well-being as well as your loved one's well-being. What are you going to work on? Maybe you identify one situation and you're going to work on it Now.
Speaker 1:Don't forget, too, that I'm here to help, but also seeking professional help, especially with your emotional needs, and your mental health, is important. You can start by asking social workers or the nurse navigator, or finding a support group or a therapist. I mean, nowadays you can just go to any site and get help, and they can go ahead and help Check with your insurance company. Maybe you have so many free. And then I want you to be able to communicate openly, maintain open and honest communication with family members, with your care team, with the nurses and the social workers and the home aides that are working with you and tell them when you're at your limit. Tell them when you feel like this is really working. Communicate that and asking them. Don't forget to ask them. You know what went well today with mom, what didn't go well today with mom? What alarms are you seeing? You know what did she say while I was gone? Being able to go ahead and communicate these openly and really documenting all of this is important and tracking things and watching that and having those in one spot. So when you go to the doctor, when you go ahead and meet with your other family members, you can talk about it, that you can talk about the good things that are going on, the struggles that we're still having. It's so important.
Speaker 1:So, as we wrap up today's episode, you can tell that caregiving, advocacy and the most important one, education is such a foundational one. We only skim the surface. Today I probably could do a half a day seminar on just the education piece. But remember, education is not a one-time event. It's an ongoing process that you need to go ahead and continually work on. You're going to make mistakes. You're going to not be up to speed on some things. You're going to learn that next time I'm going to go in there more prepared. Next time I'm going to communicate before I get to my breaking point. You're going to be able to do that. Like I said, barbara Corcoran's experience, shared in episode 233, underscores just how pivotal education is.
Speaker 1:Navigating the complexities of caregiving, you know, understanding the disease and then understanding the progression of the disease, understanding what the needs of your loved one are, whether you're starting out or looking to deepen your advocacy skills, embracing continuous learning empowers you to make informed decisions and advocate effectively for your loved one. I'm going to tell you right here and there if you get a doctor that's not open to questions, or if you get, you know, any professional that's not open to questions, then they're not the right person for your loved one. You need to be able to ask questions Now. Obviously you want to be cognizant of their time and in what you're asking, so definitely give them a heads up. I have questions you know to ask. You know I gave them to the nurse navigator in advance and when I do that now, the nurse navigator says I'll answer these questions, but I'm going to ask doctor the one that I don't know the answer to. So now again, I want to hear from you. I want you to hit that.
Speaker 1:Send Kathy a text and share another tip on your educating yourself. What is a tip that you have? Maybe it's building your team. Maybe you want to add a spiritual advisor. I can't tell you this. It still makes me so sad. My dad was so afraid to die, and so we brought in the priest, the pastoral associates, different people once a week to talk to my dad because it was better for him to talk to somebody else, and it helped each and every time. Maybe it's another technology you want to communicate to your team on?
Speaker 1:Like I said, when Dennis was in his stem cell transplant, I created a Facebook group and we did it together. Then we created and gave them updates each and every day. We shared pictures of where we were at, we asked for help when we needed that sort of thing. So what is yours? Send me that text, because education is a work in progress. Remember, educating yourself is going to take some time and you're going to continuously change your loved one's condition, change your emotional state, change. So too will your caregiving strategies and your knowledge needs. Stay curious, keep asking the questions. Never hesitate to seek out new information and support. Ask your question in the group.
Speaker 1:With that text, this commitment is ongoing education Not only enhances the quality of care you provide, but also ensures you remain resilient and empowered in your role. So if you found today's discussion valuable, I encourage you to take the next step and I've said it like 3 million times send me a text, send me a text. Or, if you get that email tomorrow, answer that email and reply back. And remember, if you want the detailed information from today's episode and because I covered a lot of ground, you can go to kathielvancom forward slash blog, slash 236, which is the episode. I'll have that link in the show notes.
Speaker 1:It's packed with actionable tips and comprehensive information to help you strengthen your advocacy skills. So again, thank you for joining me today on this foundational pillar of education. Advocacy is a journey, and every step you take towards educating yourself brings you closer to providing the best possible care for your loved one while maintaining your own well-being. I want you to really stay strong on this, stay informed and keep advocating for your loved one and, most importantly, yourself through this journey, so that when you look back at this years later, you're going to be proud of the person that you became while you were a caregiver. Have a good rest of the day, my friend, and we'll talk to you again next week. Bye for now.