Hope for living, loving and caring with no regrets!

Wearing the Advocacy Hat

Episode 29

Rayna Neises, ACC, host, and Aly Neises, RN, cohost, reflect on the conversation with Kelly Johnson who provided helpful tips for caregivers as they wear their advocacy hat while caring for a loved one.  Additional insights shared:

  • Doctors and other medical professionals need all available information . . . Try writing a letter or sending a message before appointments to provide your perspective and avoid the uncomfortable situation of sharing in front of your loved one.
  • It is okay to ask questions and want more information . . . Just keep your loved one’s wishes at center focus.
  • Being a good advocate requires you to speak up in a respectful way.
  • Avoid getting wrapped up in your own emotions and feelings and ask, “Is this going to help with my loved one’s happiness or health?”
  • Recognize that as a caregiver, you are an advocate for your loved one and embracing that will allow you to be a guide in the process.
  • Advocate by doing research and talking to others with a different knowledge base.
  • Be an advocate vs. a bully by focusing on finding a win-win where perspective is shared, and understanding is gained.


*Transcript is an actual recount of the live conversation
Rayna Neises: 
Welcome to A Season of Caring Podcast where there’s hope for living, loving, and caring with no regrets. This is Rayna Neises your host, and Aly Neises your cohost. Today, Aly and I will explore advocacy in response to my interview with Kelly Johnson. I think the thing that stood out for me in my interview with Kelly was just how suddenly she was thrown into this role of not just mom who has a child, has a brain tumor, but having to understand all the medical needs and then school and all of the educational needs and the longterm repercussions of brain surgery and chemo and radiation, and wow. Just, wow. So much for anyone to go through, but on such a short period of time, just that suddenness of the whole experience and then the longterm repercussions of it, it was actually. I don’t know, I’m kind of at a loss for words.

Aly Neises: 
I cannot imagine going to the hospital because your kid has a headache. And you find out that he has a brain tumor, and then not only that he does, he have a brain tumor, they’re sending you to a different hospital because they feel like that’s what’s best for him. So you get shipped out. I just can’t imagine the title waves of emotions that she would have felt. You know, for those first 24, 48 hours. And then when you finally realize what’s happening and then he’s already having surgery and, it just, it happened so quickly for her. I can, I can’t imagine that, especially on your little five year old son, that would be so scary. And so I would just, it takes my breath away to think about like, But you gotta do what you gotta do to do what’s best for him. And you can’t pause. I mean, speaking from experience, especially when you’re dealing with cancer, you kind of got to move quickly and we got to come up with a game plan and it’s ever changing to, depending on testing and outcomes and things like that. So I can’t fathom that, especially when we’re talking about our children, but. I love that she just kind of fell naturally into that role and then Kelly, didn’t talk about this, but I’m sure she was an advocate during that time of him being in the hospital and the chemo and the radiation and the surgeries and all of that cause he’s five, he can’t tell you what’s going on or what hurts or, she’s going to be able to tell the medical staff much more than that. Then that folds over into him going to school and how much she was such an advocate for him there. And that’s a beautiful thing. I think it’s a really natural thing when we talk about being advocates for our children. But I think sometimes when we’re talking about being advocates for our parents, it’s a little different, just because that relationship is different. I think becoming more comfortable with being an advocate for your parent is going to make that journey all the way home, a lot easier for you. So do you have some recommendations or thoughts on positive ways to be a good advocate for your parents and how you even create that relationship or create that dynamic between you and your parents?

Rayna Neises: 
It’s a dance is what comes to mind of being able to honor them and allow them to lead as long as they can lead. And as long as they’re capable of seeing the whole picture and being able to lead in that way. But even sometimes when you’re dancing, you kind of trade those roles a little bit, there’s a give and take to what you’re doing. And I think that’s part of what has to happen. Obviously when your parent has dementia or a diminished capability of making decisions or even communicating. It’s it changes. And so that’s what came to mind. When I first started going to doctor’s appointments, we had the diagnosis and so we were just sharing his progression. How is he doing, what things are getting, you know, what’s changing that kind of thing. Because of it being Alzheimer’s they would do testing on my dad and ask him questions, but they separated us and allowed us in a room by ourselves to be bluntly honest about what was happening and being an out of town caregiver. In that role, I wouldn’t even call myself a caregiver, but being an out of town daughter, I was more limited in my experience of what was happening. I saw somethings. But I didn’t see everything. And he definitely was able to continue doing a lot of things that he loved and able to, be very social and have conversations that were appropriate. But when it got down deeper to really remembering the last three things, they said, it became obvious that no, he really can’t do that. And so it was something that we had to be aware of have the time separate or have things in writing so that the doctor can read them before they even come in the door so that they are more in tune with you and what you’re concerned with before they even show up. because my dad was so social, he was really appropriate. long into his disease, he could shake hands and make eye contact and give that great smile that he had and make people not know what a struggle it was. And unless your conversation went deeper, you never even realized. That he was struggling. And so sometimes things like going to the cardiologist. They would think that we were being rude when we were chiming in with answers, because we were speaking up on his behalf and it appeared that he should have been speaking up for himself. And that was difficult to navigate because we wanted to be respectful of him. But at the same time, we needed all the information out there to the people that needed all the information. That was one of the things that we loved about our primary care physician that we found towards the end of his life She would have him come in do the physical exam check in with him, ask him how he’s feeling. If he’s having any pain, if there’s any concerns that he had. And then we were able to have a caregiver go ahead and take him to the day’s state facility. And we had a heart to heart conversation about how things really were, so we could preserve his dignity at the same time, get the information to the doctor that we needed to. But I think one of the challenges when you’re caring for a parent is how you walk that line of being respectful of them when they’re there in the room with you. So I often counsel clients, write that letter to the doctor before you get there, put the symptoms on paper so that doctor can specifically ask them questions about your concerns. So that they have the inside information without having to be uncomfortable for you to tell on your parents. That would be a tip that I would definitely share.

Aly Neises: 
I love that tip. I know that a lot of physicians nowadays are moving to a portal as well. So there’s like a messaging system that a lot of times are built into that. That would be a great way to send them a message before the appointment. Hey, these are the things we’d like to talk about or, Hey, this is what I’ve noticed, here as of late. Just so there’s some of that groundwork already laid. I think you bring up a great point is that as we walk this journey with being an advocate, especially when we have our mom or dad, grandparents or whoever that are, I’m still cognizant, but are having some memory issues. That’s sometimes harder. I have found that as a kid, this manager, we call them parrot phrases. So. I have some patients that have severe dementia, but if you would go into their room and talk to them, they could have a normal conversation because they’ve had normal conversations for so long that their brain is still able to click forward and say what would be socially acceptable. So how are you today? I’m fine. How was the weather outside? It’s great They’ve worked so long and working with small talk that they can have a sort of conversation, but once you get down to meaningful conversation, that’s when you lose them. And so even as a case manager, I’ve learned the ones that will kind of give me those parrot phrases. And so I try to ask them other questions. Not so that I can test them, but I also need to be able to see their cognitive decline. So I need to be able to showcase that in my documentation, but I’ve learned who I, who I can bring up or how I can talk about things. And then all of a sudden we’re down a rabbit hole and neither of us really understand how it got there because they don’t have that mental capacity sometimes to answer the question appropriately. And so they’ve kind of just weaved their own way. Being a nurse, one thing that I deal with a lot, our families as well, especially in my caregiver, like the nursing I’m doing now. Cause we’re talking about terminal illness. So at the beginning, a lot of times it’s patients being advocates for themselves. And they may be very adamant about the things that they want or don’t want. One of the primary diagnosis is we get a lot of times is cancer. So for that, I have found that cancer is very tricky and a lot of ways, because when we’re talking about cancer, you go from this standpoint of fight. And fight and fight, and we’re going to do the next treatment and we’re going to do chemo. And then all of a sudden the oncologist comes in one day and it’s like, there’s nothing else we can do for you. And it’s like, this switch has been flipped. And unless the oncologist says I’m done, or the patient says I’m done, it’s very hard. And so sometimes. It’s really, really hard for families to also be on board for that. What I find a lot of times is that I’ll have family members come in and say, well, this is not what mom wanted, or this is not what mom would want. Or we were doing chemo last week. Why aren’t we doing chemo now? So I would like to encourage caregivers. it’s okay to question people. It’s okay to ask questions, but I also think it’s important to also understand that. I mean, you said it perfectly Rayna. What we’re doing is trying to honor the wishes and what our loved ones want. And so we gotta do that with respect and understanding and with them at the center of our focus. I’ve had family members that have been great patient advocates, advocating for his or her pain. I had one family member that the patient’s pain was out of control, but during our visits, it was very controlled, but this patient would downplay her pain quite a bit. She would tell me she was fine. She would rate her pain, a two at a 10. And finally about the third visit, I looked at the daughter because every time I asked about the pain, the patient would say, Oh, it’s only a two out of 10. And it only hurts sometimes, but the daughter would almost Twitch like, she needed to say something, but she didn’t want to say something because she didn’t want to step on mom’s toes. So I’m glad that the daughter spoke up. Like that’s a perfect example of being a perfect advocate for your mom or dad. it’s okay to speak up, but do so respectfully, but I’ve also had the polar opposite where. I had a patient, very short of breath could barely carry on a sentence. I’ve done a lot education about medications, normal medications. We give to help relieve the shortness of breath. Other avenues that we do, like turning a fan on wearing supplemental oxygen, things like that. And I said, okay, What are you seeing? I mean, you’re here most of the time. Do you feel like her pain is a two out of 10? Okay. And the mom just kind of looked at her daughter and her, and she finally kind of gave her a nod, like it’s okay. The daughter, or spoke up. And we found out that she was having pain crisises every night. She was hurting seven out of 10. Most of the time. Yes. Right now the pains are two at a 10, but last night it got up to an eight. And so, without the daughter saying anything to me, that patient wouldn’t have suffered and she would have been hurting and her quality of life would have been terrible. And that’s not my goal. But one of the medications we use a lot is morphine. And the reason we use morphine is cause it’s easy and it’s easy out. So it’s short acting, people get a lot of relief, but anytime we use morphine, a lot of times people get very nervous. Cause it’s morphine and we’re talking about hospice. So when we’re talking about hospice, a lot of people more with death and that’s not necessarily the case. So I’ve done a one yeah. Education with this family already. And with this patient about her in stages and what they look like, and the is the shortness of breath she’s going to experience and is already experiencing. She was so short of breath she couldn’t say more than two words. Without just gasping for air plus with the oxygen on already. So we were talking about comfort and what that looked like, and everyone was on board with that. But when I mentioned the word, morphine son shuts it down. No, we’re not doing that. We’re not giving it. We’re not doing any of this. You can give her anything else. We can’t give her that. And I looked at the patient and I said, what do you want. And he cut in again and tried to step in front and talked over us and talked over her and he wasn’t even listening to what the patient wanted. And so finally, I had to explain to him this is your journey as well, but our main focus is her. So I’d like to hear what she wants to do. And I tell all my patients that this is your journey. I’m not going to tell you exactly what to do. I’m just going to tell you what I would normally do, and you can make the decision, but I’m going to be your guide and I’m going to talk you through things, but ultimately the decision is up to you. I’m not going to force anything on anybody. That’s not fair, especially when we’re talking about end of life. And she very timidly finally said I wanted to try the morphine. And so I gave her a dose. And he was irate and he was irate from the simple fact that he was uncomfortable with it. So I pulled him aside and tried to have another conversation with him to calm him down, to educate all of that, which he didn’t handle appropriately. So I excused myself and I let my supervisors know what was going on. I let the physician know what was happening. On my next visit the patient was a totally different patient. She was breathing better. We could have an actual conversation. She was smiling. I don’t, I didn’t know that woman could smile, honestly, cause she was just, huh, it’s been such a hard time breathing.

Rayna Neises: 


Aly Neises: 

And I find, I just asked her, and I apologized, I told her, I said, you need to understand that they’re your advocate, but I’m also your advocate. I also have to speak for you. So. That’s why I asked you what you wanted. I said, I didn’t mean to put you in a position where you aren’t comfortable. I didn’t want that for you, but I needed to know that what I was doing was what you wanted. And she’s just said, you know, he handled it inappropriately and it’s okay. And we talked about it and he’s better now. And she’s like, it’s all fine. And then from then on out, we had no more issues, but. That would be an example of what a bad advocate would be is that you’re not listening to even what the patient wants or because you get wrapped up in your own emotions and feelings. And being a daughter and being a caregiver myself, it’s easy to do to get wrapped up in the feelings of what you feel like is best or in the feelings of what makes you uncomfortable? very easy to do. So I would say like, take a breath and again, just think about what does mom or dad want, especially if they still have a voice, like you had said, letting your dad make some decisions, letting him voice what he needed in those situations is the best way to do that. But also when they don’t have a voice, putting them at the center and trying to make sure that you’re doing what’s best for them. I know you’ve talked a lot about, is this making dad happy or healthy? So I think that’s a great way of being a proper advocate, especially when they no longer have a voice. Is this going to help with this happiness or their health? If it’s going to great. Let’s do it and let’s move forward and don’t question it, but he can’t be bogged down in your own emotions and your own feelings of it because it gets really cloudy and really messy, real quick.

Rayna Neises: 

That’s so true as a caregiver, we have to acknowledge our own emotions. And sometimes we’re just not ready to hear what’s being said, or we’re not ready to deal with what we’re seeing in front of us, but becoming aware of your reactions and your body and what’s happening in your head can make a big difference in your advocacy. Because if you’re stuck in your own head and telling your own story, then you’re missing the person you’re caring for. And you’re not being a good advocate. You need to learn to be an advocate for yourself, which might mean I need to take a few minutes. I need to step out of this. I need to calm down so I can hear what you’re saying. Actually realizing that that your emotions are clouding, possibly your decisions or your interaction with the doctor, or even with the person that you love. Sometimes we think we are farther along in the acceptance process than we actually are. So it’s oftentimes I imagine at the end of life, really challenging for the caregiver, because it has been our job to advocate and to fight on their behalf with them, alongside them, all of those things. And when the fight stops we have to change directions, sometimes we feel like we have whiplash and we just don’t get there as quickly as the person who’s been doing the fighting and their reserves are just depleted and they’re ready to stop the fight. So it is a tricky thing being a advocate and realizing that again as Kelly said it is a hat that we have to wear as the caregiver. We are an advocate one way or another, and realizing that we are helps us to embrace it a little bit more instead of keeping your head in the sand and just trying to do the same thing over and over again, and not allowing the changes that are happening with the person we’re caring for, be the guide in the process.

Aly Neises: 

One thing that I think our caregivers need to understand is that neither of us are saying don’t question anything, as an advocate for your loved one. I think, especially when we’re talking about an older generation, we’re talking about we don’t question authority and a physician is an authoritative figure. And so it’s very common that we agree to tests and studies and medications that we aren’t very comfortable with. And what I would encourage you guys to do that as a caregiver and as an advocate, to question those things and to ask why and to ask, to make educated decisions together. I think, again, you do this respectfully and with empowerment, but if you do it, you do it for the same reasons because it’s what’s best for mom or dad. It doesn’t make you a bad advocate to question those things, but I think it makes you a better one in fact. It’s not always interpreted or received very well sometimes because again, we have physicians that aren’t used to being questioned either. And I mean, speaking as a nurse, there has been many, a times I’ve been told that that’s not my job, or I’m not understanding or whatever, but that doesn’t stop me because I know what’s best for my patients. And that’s what I need to do. To do what’s best for them. So just remember that as well and we encourage you to do that. And I also think like just reaching out to a family member or somebody in the medical field that has some knowledge, for finding those people and understanding and laying that groundwork and asking their opinion completely okay. As well. And we wish you would do that.

Rayna Neises: 

I totally agree. It is so important. what I was thinking, as you said, that was, you know, do your own research. So that includes. Talking to people who have knowledge base that you don’t have, but that also includes their scariest stuff on the internet. There’s bad stuff on the internet, but there is also general information that’s available from reliable sources. And I’ll never forget I was young, when my mom passed away, but the last few weeks of her life, she kind of had a psychotic break and she was just stuck in this cycle that she could not come out of. And she was in the hospital for almost a week as they were doing x-rays and different tests, trying to understand what was happening, trying different medications to see if we could break the cycle. And every morning, our family was there to talk to the attending physician and every morning we were bringing, okay, I was reading this and have we tried this or have you done this test? And what did it show you? we were bringing information that might or might not have been helpful, but we were just trying to problem solve with him. And it was funny because we found that he started doing his rounds earlier and earlier, so he could miss us. because there was some question there of his comfort level. I think he just already knew before we were ready to hear that there was nothing they could do for my mom. And that’s a tough place to be. And unfortunately, I think they frequently don’t tell you that he got there eventually, but for us as a family, we just, it seemed to happen overnight. She had made her progression. She wasn’t normal, but she was good for her. And then suddenly this happened and she couldn’t talk, she couldn’t eat, she couldn’t go to the bathroom. She just was stuck in this cycle that didn’t allow her to, to function normally. And it just, it literally was overnight. So it was hard for us to wrap our minds around. But once we knew that every option had been extinguished, then we knew, okay, it’s time for us to let her go. It was a hard thing to do. And we definitely were in the advocate role for a period of time. It’s how we had that frank conversation. And he was able to say, you know, I really have done everything I know to do. There’s not anything more we can do. And it was the beginning of saying a goodbye. That was not one we were ready for, but one that was required. And I think as you are moving through caregiving, you have to understand how to have conversation. Advocacy is being able to find a win, win for both people involved in the conversation. It’s not, I win and I prove you wrong. And so you lose, it’s a win, win. It’s I gain understanding. I offer you suggestions or ideas you gain understanding from my perspective, and you are heard as well. So really focusing on the win win in advocacy is what keeps you an advocate versus a bully.

Aly Neises: 

I think that is a great point.

Rayna Neises: 

So caregivers, as you are listening and thinking about your advocacy hat, we hope that you’re feeling more comfortable and more confident in that hat. As Aly mentioned, I think having others that you can have conversations with, whether they know more medically or have been down the same road as you’re going down with a loved one, that can make a really big difference because we oftentimes have gut instincts about things, but we’re hesitant to jump in and hesident to offer it up. And I would just like to encourage you. I’d like to give you permission to be an advocate for your loved one and for yourself, if there are things that don’t make sense for you. It’s okay to be an advocate for you too. It’s okay to ask the questions that you need to ask in order to get the answers that help give you the piece that you need to have to continue to make the decisions that are required of you in this season. We hope some interesting things in advocacy, and we’ve got you thinking. Feel free to leave a comment on our website about how you have found yourself an advocate or ways that you’re struggling with your advocacy. We’d love to hear from you at www.Aseasonofcaring.com/podcast. Just reminder, A Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, or legal questions, please contact your local professionals and take heart in your season of caring.

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Meet Your Hosts

Rayna Neises, ACC

Your Host

An ICF Certified Coach, Pod-caster, Author & Speaker, offers encouragement, support and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected.

Rayna Neises & Aly Neises

Aly Neises, RN

Your Co-Host

A registered  nurse, has worked in healthcare for over ten years. Currently she is a case manager for hospice taking care of terminally ill patients and their families.

Her passion is to help and care for others.

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