Rayna Neises: 0:09

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 today we have a special guest Beth Rooney Suereth. Beth is the founder and CEO of Caregiving Pathways. Beth cared for her father through five years of dementia, diabetes and cancer. She founded Caregiving Pathways to teach family caregivers, how to manage the hospital stay and the end of life She’s a Certified Caregiving Consultant, educator and facilitator and is an end of life doula. Her clients include the ARP public policy Institute and ARP New York. Beth is also a part-time care manager at Caregiver Homes and teaches financial planners, how to create practical and end of life plans for their clients. Beth has held roles at infusion therapy provider, Bioscript, prescription benefit manager, Express Scripts, and The Caregiving Years Training Academy. She’s also a volunteer family, caregiver coach at Overlook Medical Center in New Jersey, Beth earned a Health Policy and the Affordable care Act Certificate from the University of Pennsylvania and holds a Bachelor’s degree in English from Boston University. Welcome Beth. I’m so excited to have you here today.

Beth Suereth: 1:20

Thank you Rayna. I’m so happy to be.

Rayna Neises: 1:23

So I love your topic. I was blessed in that both of my parents, honestly, didn’t spend a lot of time in the hospital, but I wanted to talk with you because I know being a caregiver that is such a difficult time when you have a loved ones spending time in the hospital. So I’m sure that Caregiver Pathway and your focus in that came from your personal story. So let’s have you start off sharing a little bit about your journey as a caregiver, and then we’ll get into tips and ideas for caregivers in handling that hospital stay.

Beth Suereth: 1:55

Sure. So my dad had dementia, diabetes, and a whole host of complications as a result of that and he had multiple hospital stays. Unfortunately, multiple amputations. He stayed in a hospital in rural Florida, near a big academic medical center in New York and in the hospital near me in New Jersey. So we saw lots of different hospitals. My sister and I were a real team and tag teamed and, sometimes together as needed. And we would go to the hospital at first and just sort of stand in the corner and be the dutiful daughter and smile nicely at my dad and say, you know, look like everything’s going to be okay. And then eventually I would sort of start realizing that something seemed funny or off, or they weren’t quite realizing what was going on or what wasn’t going on. And my sister and I would look at each other and eventually I realized I had to jump in and let people know that he had dementia and that it wasn’t his hearing for example, that was the problem. They needed to speak more slowly or he didn’t do well with other accents. And he just couldn’t process that information. So I had to translate, so this went on for years. We were caregivers for five years for my dad. He passed away 16 years ago now. My background is healthcare marketing. So eventually my little marketing brain was saying, okay, I need more information about this. And other people need more information about this. But this took a couple of years. So a couple of years in, after I realized what was, what got the lay of the land, what people’s incentives were, how the hospital system worked and didn’t work and how to make it work for my dad. And how to work with the people there, to make them work with my dad. I finally thought, okay, I need to make some materials to give to other people because everybody shouldn’t be experiencing this like this. So this was, you know, 10 years ago when never, first of all, dawned on me to go look for any information. And once I did, I didn’t find really anything I was shocked once I finally I realize that everybody goes through this and nobody has any information. And I wished that the hospital would have just given me a simple little pamphlet at the beginning to say your family caregiver, here’s your role. Here’s some sort of broad information about how this whole experience works. So that’s what I made and then put it on my website. So I started Caregiving Pathways, as you said, to share this information. And then as my dad went along and eventually, he died and so we went through that whole end of life experience. Which in many ways was terrible. And in many ways we escaped the worst of some things by dumb luck. But I also wanted to kind of share with people how to prepare for that. So I’m all about preparing. I’m just a natural preparer and information sharer, and I was like, this is the greatest opportunity for somebody like me. So now I created another simple guide about how to manage the end of life, but I also give away on my website. So that’s how I got into all of this. And I, I just, can’t not do it. This is just all I think about and all I do and move forward to help other people through this because it’s so awful and people are so unprepared.

Rayna Neises: 5:06

Amen and amen. I just love your heart in it. And I do think it’s, it’s so hard. It just is hard. You’re never ready for it. You don’t know what to do, what to say. And like you said, you have to be a team. So there’s always this line that you’re walking in, trying to bring the other people into your family team to care for your loved one and how you do that, it’s just tricky. So I love that you have found a way to break it down, given us some really bite things to think about and to prepare. That prepare word is so important because as family caregivers, we’re often just dealing with the crisis in front of us. And like you said, though, our family didn’t have a lot of hospital stays we had enough, boy howdy, they were exhausting and difficult. And so prepare now caregivers, jump on this opportunity to get this information from Beth and you’re not going to be sorry. Read through it. It’ll be in the back of your mind when you get to the point that you need it, you can pull it out again and really spend some time processing through it. But we’re going to talk about some of those things today and just help you to think of how to be able to handle a hospital stay with your loved ones is what we’re going to focus on today So let’s just start kind of at the beginning, what are some of the most important things that you feel like we can do as caregivers to help your loved one when they’re in the hospital?

Beth Suereth: 6:35

Okay. Well, first of all, and this is very difficult with COVID, but one of the best things you can do is to just be there. At the hospital, things happen at a moment’s notice people, doctors, nurses come in at unscheduled times and in order to catch them and understand the dynamic of what’s going on, you need to be there. With COVID that’s very, very hard. Now hospitals at least have understanding of ways to keep family caregivers involved. It’s not the same as being there at all. The first thing you would do at this point is if there are visitor restrictions is to say to the first person you encounter, essentially, how will I communicate with my loved one’s doctors and nurses, and let’s figure out a way to establish regular communication. Then you’re thinking, Okay we’ll set up a system. Well, everybody works a little differently. Everyone’s timetable is a little different. You have two or three rounds of nurses in a 24 hour period, same with doctors. And a lot of times you’ll get different people on the weekend. Then you’ll get during the week, which was a big piece I didn’t catch on to for a long, long time and certain procedures and tests and all kinds of things really don’t happen on the weekend, the way they do during the week. And so I learned to push for, or at least be aware of what was going to be happening during the week versus this often sort of settling in for the weekend and how to manage that frustration on my part. Because during the week it was go, go, go, fix, fix, fix, and then you get to the weekend and it would just sort of stall. And you think why? Sometimes my dad was really only there for IV Antibiotics, which he had for years. It was just so frustrating to just sit there and so lots of dynamics and to understand how the hospital works, how each individual role in the hospital works. And that those people are focused primarily on their role, doing a good job for themselves, their patients and their bosses. And like you said, You want them to fit into your family and at your understand your family’s needs and tune in, or they have so many more pieces that they have to focus on and then they need to fit you into their world. So understanding that difference is key, and then you can figure out how best to work together. So one of the great ways to do that is to say to people, everyone you encounter along the way, how can I help you do your job better? How can I make it easier for you to do your job? We obviously want what’s best for my dad and I don’t want to stand in the way of that. I want to understand, what you’re doing and why, and be part of all the decision-making, but I’m sure there are ways that I can help you in all of this situation. So for nurses, for example, you could say, listen, I will take care of all of the when I’m here, which was the bulk of the time. Luckily I was able to, I could work from there, the stairwell having meetings, but whatever. And so I would say like, I’ll get water from my dad. I will have him to the bathroom. We’ll make sure there’s no fall risk while we’re here all those types of things. And we would save up our questions for when the nurse came, rather than sort of buzzing every time, somebody needed something. And so we learned techniques like that to make it easier for that person to manage us. So realizing that we have to manage them and they have to manage us. But you know, when you arrive in crisis without any awareness of any of this, you just are in a panic. You want your loved one fixed and why isn’t the urgency that you’re feeling being experienced across the board. So just that perspective alone is huge.

Rayna Neises: 10:15

It is, it really is. And I like what you said. I think even verbalizing what you’re doing to help them is also helpful because dad had 24/ 7 care because of the fact that he lived in his home. So we had caregivers scheduled 24/ 7. So when he was in the hospital, we had someone with him 24/ 7. So we just continued the same work cycle with our caregivers. Most of the time, it was a family member, especially in the hospital, whenever the crisis was there. But when we went to rehab, we also kept caregivers there to support because we knew it wasn’t realistic to think somebody would be with him 24 /7. And he needed that because he was going to get up and he was going to take his stitches out and he was going to remove IVs. If there wasn’t somebody there talking to him about it, because with dementia he just didn’t know it didn’t understand. So I think it would have been helpful to say to the nurse, you know, these are the things that we’re going to do just because then they would understand. We often felt that they realized we were doing so much of it that then we felt neglected. We felt like they didn’t come in and check on us.

Beth Suereth: 11:24

Yeah, and that’s a definite risk. And before I established the sort of two-way communication about who was doing what. I would feel that that they would not check on us as frequently because oh, the families in there, we don’t need to do anything. And once I became aware of that, then I thought, okay, well, I’m fine with that in many ways, let them go do their thing with other people who need it, who aren’t as lucky to have a family member be there as much as we were. And then they knew that if I asked for something, I really needed it and they would make an extra effort to really do what we needed at that point.

Rayna Neises: 11:56

Yeah, I think that’s such a great point. So you mentioned too, just saving your questions, but I think there are so many questions. Did you have tricks that you that were helpful with that?

Beth Suereth: 12:07

We did. I ended up with a big fat spiral notebook that stayed in the room with my dad, so that regardless of whether it was my sister who was there, we could keep track of things. So we tracked test results and all the daily markers of the hospital stay. As somebody came in to take his blood pressure and temperature and things, I would just write them down because you could see fluctuations in different things. I finally realized that I could recognize a urinary tract infection well before a doctor or nurse, because I understood the dynamics of the actual test results sort of information and my dad’s behavior. And so there’d be, you know, and this is another thing that you want to alert people when the behavior changes. So there’s sundowning. I didn’t know what sundowning was one day a nurse said, oh, I think your dad was sundowning as she walked out the room. And I thought, well, please, excuse me, please. What is that? And there’s an assumption on a lot of assumptions on both parts, because that’s just the way the world works. It’s not a bad thing. It’s just, it is. And so her assumption was that a family of somebody with dementia understood what sundowning was, but I did not at that point. So she explained to me that it’s as the sun goes down toward the end of the day, that older people with dementia, lose their ability to process and to cope. And so things would go awry and behavior would change and verbalizations would change and capabilities would change. And so once we recognize that. We could do things earlier in the day that needed to be done and needed my dad’s input, his rational, old dad input. And then we would leave some of the other pieces till later in the day when it didn’t matter. If my dad was sundowning or not. We could be prepared that we could leave for a little while in the middle of the day, if we had things we had to do and then come back to help him manage the sundowning that he didn’t realize he was having, he just knew he was miserable. There became an ebb and flow of all of this, but you had to learn what it was. But that spiral notebook was the best tool and everybody has different ways of information tracking. You can do it online. You can do it on Google docs or wherever so that other family members can track along with you. But since it was just the two of us and I’m just a writer, I just write things down. That’s how I work on paper. I know I do. I do use technology like everybody else, but that notebook was really helpful. Just writing things down so that you can refer back because in the beginning you think, oh, I’ll remember all of this. And in the beginning you might, but after awhile, there’s no way you know, for the first year or two, I could recite the whole trajectory of the hospitalizations essentially. And then after that, I couldn’t do it anymore. There’ve been too many if I’ve been going on for too long. So writing it all down and tracking and whatever system works for you and your family it’s absolutely critical.

Rayna Neises: 15:03

So critical. It also built credibility with the medical profession that we could pull out the notebook and say on this date, this is where he was, or we can blood pressure for a period of time and actually have hard numbers. It just really seemed to build credibility in that communication with them. Because like you said, they’re looking at test results. They aren’t looking at all the other things that you’re looking at. And so being able to speak their language in some ways, I think it helps to be able to do that and having one place for it all, because like you said, wow, you don’t remember.

Beth Suereth: 15:38

Yeah. And a lot of them are looking at pieces of information in isolation and when you can put it into context for them and kind of leave back in my book and say, okay, So here’s when this sort of thing started, it went up, it went down and here’s where. And I’m wondering, I would never tell somebody, you know, I know it’s this I’ve learned to say, I’m wondering if it’s this and look at them for their professional opinion. And they would say, oh, I think it is that. And I go from there.

Rayna Neises: 16:02

Oh, that’s a great tip because it is, its a lot in how we present ourselves and allow them to be the expert that they are and encourage them to be that expert all at the same time. So I like that. That’s a great tip. I’m wondering that’s a great way to start a sentence. So any other tips you have on talking to doctors?

Beth Suereth: 16:25

Yes. So the one sentence that has been the most helpful to me is to make sure. Clear to people that I’m not asking, because I’m judging what they’re doing. And I think they’re doing it wrong, which can come across whether you intend it that way or not. But I would say, can you help me understand that? Can you help me understand something? Can you help me understand what’s going on with this? And that’s a sort of a little bit of professional speech, even the bay can understand and use themselves. I found it very helpful to see how they spoke and how they approach things and use a similar tone, words, et cetera, to make the communication just feel more natural to them. So it may feel unnatural to me, but can you help me understand something? And sometimes I would preface that or interject I’m new at all of this. Can you help me understand something? And those very few words right there change the entire dynamic of the communication. They see you in a different light, not just the family member over there and some family members are a pain in the neck. I’m sure I’ve been a pain in the neck on at least the rare occasion here or there, but I learned. And so to let them know that you’re just trying to follow along and you really are in a different space from where they are so that they can kind of adjust. They’re on their rounds, they’re doing their thing and they can stop for a second and think, oh, she’s new. She doesn’t realize. Okay. And she’s trying to figure out what’s going on. Okay. I eventually, you know, she, he will get it. Information a little bit differently and more information. The other piece of that is I found that I got a lot more detail and context when I would say things like that. So it wasn’t just, can you help me understand what’s going on with my dad? Temperature, it’s fluctuating because of the reason I can’t figure out or whatever. And so then they would give you sort of the bigger picture context around that and not just really answered the question, which was, yeah the insight was like, oh, Okay. I got such a bigger picture view of what’s going on. So you and I had talked about this before, how a lot of family caregiving feels like you’re addressing a symptom, you’re addressing a problem. You’re addressing a surgery or. You’re so entrenched in that, that you don’t ever step back and look at the bigger picture, the trajectory of the whole caregiving experience. Even the trajectory of a whole hospital stay in and of itself because there is a trajectory. And so to have that broader understanding of what goes on. You know the sense of urgency that we feel as the caregiver everything is urgent to us and it can’t be that way to every professional because they have 20 of us or 30 of us or more. And so to get that perspective really helps you cope and your sense of urgency is still there, but it’s tempered by understanding of the bigger picture. And that makes for so much less stress, it makes you able to, to manage better and see other questions to ask. It really just makes a whole difference in the whole experience and all the outcomes.

Rayna Neises: 19:37

It sounds like that big picture allows us to kind of shift out of crisis mode which allows our bodies to even cooperate with us and see the big picture. Because when think that there’s a threat then our brain stops working. We just focus on that threat and that doesn’t even allow us to see anything else. Just really thinking about, looking at the big picture can help us to stay out of that crisis mode where we’re only lasered in on one thing and not able to really see the big picture.

Beth Suereth: 20:05

Yeah. And that ties back to that keeping a notebook or journal or some tracking system for information, because when you’re in crisis mode and you receive information. You are processing it on so many levels. Oh my gosh, is my dad going to die as a result of this? Oh my gosh. Do I have to take time off from this? Oh my gosh. Do I have to leave home for three weeks straight and deal with this? What is my husband and what are my children going to think about all of this? So writing it, I’m sitting there scribbling my notes as all these thoughts are still going through, but then I could go back to the notes later to remember. And remember it correctly and then process further from there. So it was immensely helpful to write everything.

Rayna Neises: 20:46

Any other tips that you want to share? Primary thinking while they’re in the hospital, that can be helpful.

Beth Suereth: 20:52

Sure to communicate to doctors and nurses what’s important to your loved one. So when you have a medical situation there could be three different approaches doctor and or nurse or team of doctors might take. And depending on what it is, you and your family and the patient primarily want to get out of this could affect the decision-making. So you want to establish that you want to have shared decision-making and that you want to communicate what’s important to your dad. My dad’s sole focus in the beginning was getting back to playing golf.

Rayna Neises: 21:25

Huh.

Beth Suereth: 21:26

So everything was okay if he has to have a toe removed, can he still play golf? If we do it differently or maybe we would try yet another round of antibiotics or different antibiotic and see if that wouldn’t take care of things so that he didn’t have to have an amputation so that he could still play golf. So those were some big decisions and again, okay. So this goes back to the sort of coverage piece where you won’t always get the same doctor every

Rayna Neises: 21:51

Hmm.

Beth Suereth: 21:52

So one time when one of his doctors went on vacation, that doctor came back and was horrified to hear that another doctor had said, Oh, yeah, your dad, toe needs to be removed. And it was removed while that first physician was on vacation. And I saw him the interaction because we happen to be in the room. They ended up both there and I could see that I never would have dawned on you. That’s something so life-changing as having an amputation could be maybe, maybe not depending on the doctor’s view. And some people like to be more aggressive in treatment and make good and sure that the infection that was there, it wasn’t going to affect the rest of his body. Where the other one was more willing to watch how the antibiotic effect in his kidneys, because they could only handle so much of the antibiotic and monitor closely and go from there, without taking this drastic measure. So you really have to, this is another sort of last key point. I want to get that understand where your physician is coming from, what their focus is. So for example, a cardiologist is essentially looking at how to approach it whatever needs fixing from the cardiology point of view, the oncologist is looking at the cancer from this point of view, you know, so you’ve got all these specialists and they’re all looking at it from their point of view, and they’re trained to do this. This is not a problem. This is what they do. But you, as the central sort of hub spoke, of all the different spokes. Need to learn how to evaluate all of that and put all the little pieces of that together and help make a decision with your loved one. And with all of those different specialists about how you’re going to proceed based on everybody’s input on that.

Rayna Neises: 23:42

Such a vital point and big responsibility that you don’t even realize you have

Beth Suereth: 23:49

Right.

Rayna Neises: 23:49

when you first started as a caregiver, you just have a tendency to, I hate to say it this way, but I think it’s true blindly follow the physician. And you’re just thinking that they’re experiencing everything you’ve experienced, that they’ve talked to the person who came in the door before them and they haven’t,

Beth Suereth: 24:10

Right.

Rayna Neises: 24:10

like you said, they’re each focused on their own specialty. And so, they haven’t talked to the other specialists that are right there and you have, but they haven’t. So being able to both document, so you have that information and being able to then approach them in a way that they can hear what you’re saying. Invaluable. Thank you so much for that. I think it’s so important as caregivers to really dip our toes in the water and understand how important it is to communicate in a way that we can be heard. Cause that’s what true communication is. Right? And to realize that is one of our primary jobs, when we’re dealing with a situation, especially like a hospital stay, but really any medical appointments it’s being able to bring the perspective that the person we’re talking to hasn’t had the opportunity to have. And I like that you’re sharing with us it’s not that there’s a broken piece. That’s hard for me to be honest with you, but rather they’re doing what they’re trained to do. I think the system is set up in that way and we hope that a general practitioner is also that person who’s helping us bring all these things together. And that’s what we found as a family. When we found a general practitioner who could bring all that information and she could synthesize it even better than we could. That was huge benefit for our team. But in the hospital, you don’t really have that. You’re dealing with all of these specialists and you’re dealing with in your mind crisis, which is why you’re there. So, it puts a lot of pieces together that can be really challenging. Wow, great information caregivers I know that you have a ton that you’ve just taken on in your brain. So, I want to make sure that I’m pointing you to Beth’s website where you can download How to Help Your Loved One in the Hospital. You can make a difference. It’s a great handout with some just really meaty, simple presentation of information that you will really be thankful that you have, you can get that@caregivingpathways.com and also the end-of-life resources available there as well. If you would like to connect with Beth, you can do that at Caregiving Pathways.com as well. Beth, Thank you so much for being here today. We didn’t get to half of what we could have talked about, but thank you for all that you were able to share with us.

Beth Suereth: 26:26

We could go on for days with all of this, but thank you so much for having me Rayna and for helping me share the information.

Rayna Neises: 26:32

yep. Get the word out! Caregivers remember that we are here for the encouragement of family caregivers if you have financial, legal, or medical questions, be sure to contact your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation