Advice From Your Advocates
Advice From Your Advocates
Beyond the Bedside: A Caregiver’s Story of Resilience & Wellness
A Departure from the Norm: A Caregiver's Story
Typically, we bring you expert insights from the elder care industry on Advice From Your Advocates. But today, we're taking a different approach. Join us as we delve into the heart of the caregiving experience with Sarah Cart, author of “On My Way Back to You.”
In this conversation with Attorney Bob Mannor, Sarah shares her raw and honest journey of caring for her husband, Ben, through a severe autoimmune disease culminating in a heart transplant. From navigating the complexities of the healthcare system during a pandemic to the overwhelming challenges of daily care, Sarah's story is a testament to the strength and resilience of caregivers.
Discover practical tips, emotional coping mechanisms, and the vital role of community in overcoming caregiving challenges. We'll explore the importance of self-care, the complexities of home healthcare, and the broader impact of organ donation.
Whether you're a seasoned caregiver or a healthcare professional, this episode offers invaluable insights and a fresh perspective on the realities of caregiving.
Learn more about Sarah's book: HERE
Learn more about Mannor Law Group: HERE
Host: Attorney Bob Mannor
Guest: Sarah Cart, Author of "On My Way Back to You"
Executive Producer: Savannah Meksto
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ABOUT US:
Mannor Law Group helps clients in all matters of estate planning and elder law including special needs planning, veterans’ benefits, Medicaid planning, estate administration, and more. We offer guidance through all stages of life.
We also help families dealing with dementia, Alzheimer’s disease, Parkinson’s disease, and other illnesses that cause memory loss. We take a comprehensive, holistic approach, called Life Care Planning. LEARN MORE...
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Speaker 2:Advocates, a show where we provide elder law advice to professionals who work with the elderly and their families. Welcome back to Advice from your Advocates. I'm Bob Manor. I'm a certified elder law attorney in Michigan and we have a practice where we focus on helping folks that have chronic illness and particularly things like dementia and similar illnesses, and today we're going to take a little bit of a different approach for the podcast. Today we're going to talk to someone about their personal experience.
Speaker 2:So Sarah Cart is with us. She's written an excellent book called On my Way Back to you. We're going to talk about her personal experience, and I think this is really valuable for our community to talk about our experiences, and so I know often we're going to have a physician or we might have a nurse or social worker talking about specific details, but today I think it is important to talk about our own journey, and everybody's journey is going to be different, right, everybody's family situation is going to be different, but I think we can get a lot of hope and help by discussing our own journey. So, sarah, welcome.
Speaker 1:Thank you, Bob. I'm honored to be here.
Speaker 2:Thank you very much for asking so talk to us a little bit, Sarah, about your life and your journey here, and you know what your experience was. Obviously, COVID has been front and center on all of this and all of the shutdown and trying to deal with the healthcare industry, and COVID was a horror story at times. So tell us a little bit about what you've gone through and what your journey's been.
Speaker 1:My journey began when my husband, ben, was diagnosed with an autoimmune issue back in the winter of 2016, 2017. And the caregiving learning curve at the start was pretty, not very steep. One step at a time, we were told that his issues would be handled symptom by symptom and we were doing a great job with that until, fairly suddenly, we weren't with that. Until um, fairly suddenly, we weren't it. Uh, the disease migrated from his um gi tract to his joints and his tendons and eventually got to his heart and by the summer of 2018 he needed a pacemaker. And by the summer of 2019 it was obvious that his only hope for survival would be a heart transplant. And in the meantime, he and I were preparing for me to be on my own because we pretty much knew he had a death sentence.
Speaker 1:So we came into COVID, trying to get him onto the heart transplant list, and that's an arduous process and he was just getting sicker and sicker. Two weeks after the pandemic was declared, his kidneys shut down and he ended up in the hospital. He wasn't yet on the transplant list. Because of hospital protocols to do with COVID, I was not allowed to visit him. In the midst of all of that, they finally got him on the list. Then he was off the list because he was too unstable. Then they put him back on the list and they were about to take him off the list again when a heart was allocated. So the surgeon said on the way into the OR this is 50% of the battle. The other 50% will be recovery. And what we didn't know until a week later was that Ben also had a broken hip.
Speaker 2:Oh, my goodness.
Speaker 1:So when he finally came home to me 10 weeks after going into the hospital, he came home with a new heart, in a wheelchair because they couldn't do the hip until he was strong enough for that and he was independent, not looking for game relief. So so my, my caregiving journey at that point went from zero to a hundred miles per hour Overnight.
Speaker 2:In our experience. A lot of our clients tell us that working through the hospital and and rehab and home care and all of that, it almost seems like a maze at times. We talk about that Children's game, shoots and Ladders. I remember playing that with my kids and you get all the way through the game. It seems like you're making great progress and all of a sudden you slide back down to the beginning. And that's been our client experience in dealing with this and it's just the nature of the beast kind of a thing that when trying to work through the healthcare industry there's so many moving parts. We have to deal with the transitions between the hospital and rehab and, whatever the next step is, we have to deal with the medical cutbacks and it sounds like that your husband had quite a few of those. Talk to us about that, your experience first, of trying to just cut through the clutter and cut through all of the multiple sources of information.
Speaker 1:Our situation was unique to us in that it was the midst of COVID so I couldn't visit him and we were dependent on all the nurses and doctors facilitating our community patients with each other, and also all of my advocating on his behalf was via phone or Zoom call, but it certainly wasn't unique to anyone going through hospital stuff in the spring of 2020. We were just one of hundreds of thousands of couples healing. What kind of families doing that? So the COVID complication I don't know how many of our issues were COVID related and how many of them will just the red tape that is out there, but there were certainly many times when one step forward was followed by two or three or eight steps back. We were blessed to have good insurance and that was never really an issue for us.
Speaker 1:The issues that drove me nuts and made me lose sleep at night were after he came home and trying to get the home care support to work. As I said, he was in a wheelchair, he was on opioids, he had a massive bed sore, which was the other hurdle we needed to get over before they could fix his hip, and my kids say this is going to be on my tombstone. I'm just an English major, but for me to have to deal with that bed sore. I was in over my head, and that was not the only wound he had. He still had a wound from his trach. He had places where they, where they'd done catheters up to his heart through his groin. So, like I mean there would.
Speaker 1:There were all kinds of things that needed to be addressed, and the home health care agencies that were supposed to be helping us were very interested in our, our good insurance and not necessarily very interested in actually showing up and doing the work. One health care aide who just said to me oh, that part where they tell you that dressing needs to be changed every day, that's not really true. You go for three or four days. Oh boy, he's a heart transplant patient and it's COVID and I have an English major, so I'm in total panic. Anyway, the people who came through for us finally were the third agency that sent a nurse who came out on a regular basis. By the time she was showing up, 4th of July was approaching and so she was going to have several days off because of the holiday. And when she first said that, she could see on my face that I was in shock. I was frustrated. I was. You're the first person I can rely on and now and now you're telling me you're not going to be here.
Speaker 1:And she was wonderful about saying I'm not going to be here, and she was wonderful about saying I'm not going to be here, but I'm going to show you what you need to know to get through the next five days. And she finally stopped and educated me. Nobody else had taken the time to educate me, they've just been giving me excuses on. If you live in the Florida Keys, you'll fall away and it's difficult to get there and it's COVID, so we don't have the bus, you know, and she was love her full.
Speaker 2:Don't know how we would have been better served if it hadn't been a pandemic, but I think people will continue to struggle with these types of issues even after the pandemic, even today.
Speaker 1:We're in 2024 now, and the book is about how Ben's health declined precipitously, how he nearly died and how he in fact saw his way back to you, but I don't think it gives anything away to reveal that within three weeks of his coming home, somebody filed a report with the State Department of Children and Family Services regarding elder abuse. The state's laws are that that needs to be investigated within 24 hours. So this lovely young woman shows up at our house and she called ahead of time. She told me where she was from, she told me that she needed to come talk to Ben, and Ben was thrilled. Ben was recovering, but he did not have all of his executive function yet.
Speaker 1:And he was just delighted to have this lovely young woman come sit and chat with him about how he'd had a heart transplant and how his hip was broken and what needed to happen next. And I needed to stay in the room because Ben is hard of hearing it's COVID, so we're wearing masks so he can't even read her lips. And so when she said I'd like to talk with you alone to Ben, he said Sarah needs to stay. She's my translator. But really all I was allowed to do was take off my mask and repeat her questions so that he could understand that she was asking.
Speaker 2:Right.
Speaker 1:And not until after she left did he realize. And she had him sign a bunch of paperwork and had left copies of that with him. So I took her and as for her to go back to the fort. When I got back to where he was sitting in his wheelchair and reading through these papers, he said this looks like we need a meter. What's going on here? And I said you know, depending on what she says in her report, they could remove me from our home or they could remove you from our home. We don't know. We were totally clueless through that full process. We did get in touch with a lawyer that night and he was wonderfully reassuring about this. Is the way the state law works and you are probably not false of this investigation. It's probably on your third agency and you less than a week, but we never we never heard any kind of resolution about it. The state agency called us a couple times to see how you were doing, but they never said the faces and it was all of this stuff happened.
Speaker 2:I agree with you on this as far as in Michigan we call it Adult Protective Services.
Speaker 2:Even I get a little nervous when I hear that Adult Protective Services is coming in or investigating in a matter that we're working on, and I can't imagine what the families have to feel about it.
Speaker 2:What's interesting about it is there are times where I find that adult protective services can cause certainly a lot of anxiety, but sometimes it can cause issues with moving matters forward. A lot of financial support and they're able, you know, to initiate some court processes that they really couldn't afford to do on their own, and now Adult Protective Services is taking on that burden. There's some situations where Adult Protective Services can help us get to the head of the line for caregivers. There's a program in Michigan called WAVER. It's a home care program through Medicaid. There's a waiting list, and so through Adult Protection Services, sometimes they can help us get to a higher spot on the waiting list so that folks can get the care in their home that they need. I think that's what I'm hearing from you is one of the real important things to you where you were able to care for your husband in your home and that he didn't have to go and live in a nursing home.
Speaker 1:We were very fortunate on that score and I do appreciate that the agency was doing its job and that there could have been a time when we needed them to be advocating on our behalf. What was scary for us was the report of elder abuse and not knowing where that had come from and the sort of paranoia of who's watching us and who's saying something, Because we were both doing our best. I mean, it was just a challenging moment at a time when I already felt challenged. I was suddenly responsible for 20 prescriptions and three hot meals a day. I mean, Ben had come home from the hospital where he had 24-7 undivided attention of all kinds of medical personnel and janitorial staff and nutritionists and because of COVID he came home to just me on my own trying to manage all those things. So the abuse filing was out of the left field and really, really disconcerting at a time when I was already disconcerted.
Speaker 2:Well, that brings up a really important issue and you've addressed this in your book but the issue of making sure we're taking care of the caregiver too, of making sure we're taking care of the caregiver too. So I'm sure you've heard this that often the statistic is that the caregiver spouse often dies first, and I know you guys were younger, but that is a very common statistic that a caregiver spouse all of a sudden is thrown into this, and you described it very well. In just a short period of time, you went from having to manage all of this, plus the anxiety of the investigation and just the stress of everything. You talked about losing sleep.
Speaker 2:I work with clients on us to say, okay, I know we're here to talk about the husband, but we need to make sure that the wife, whoever the caregiver spouse is, that we're taking care of them, we're giving them proper support, we're giving them some respite, some time to time away, some time to regroup and, you know, taking some of the burden off, because what you described is exactly right you go from three shifts of people multiple people taking care of somebody to going home and, for the most part, you're a 24 hour caregiver. You're taking a place of three shifts of multiple people and you know how to do all of that, and it's incredibly challenging.
Speaker 1:So talk to us a little bit about your experience and and maybe how to make sure that you're taking care of yourself too the hospital and rehab were both very good about calling me and putting me through um zoom call training sessions on this is like I. I probably I don't know how many different sets of personnel I talked with physical therapists, nutritionists, doctors. The nurses when Ben was discharged from the hospital to rehab actually made a point of calling me and at that point they didn't have to. I didn't need to hear from anybody until he was discharged from rehab. The nurses made a point of calling me and saying your husband talks about snakes and reptiles a lot and he needs to not touch any for at least a year.
Speaker 1:So that's the kind of attention that some people were offering me and I deeply appreciate all of that. But the reality it's one thing to go through a Zoom call and have a nutritionist list all the foods he's supposed to have, or the pharmacist tell you which meds he's supposed to have when and it's another thing to be sitting there looking at all the piles of pills or looking at the empty meal tray and thinking, okay, what am I going to put on there? Now, I'm a list person, so there were lots of lists, there were lots of checklists, and that was very helpful. I journal when I'm panicking, so I did a lot of journaling, trying to make the times journal.
Speaker 1:Someone had suggested to me since Ben had to be in a different room than I was in we couldn't be roommates while he needed a hospital bed and a commode by the side of the bed and all those kinds of things. Someone had suggested to me a baby monitor, which was an awesome idea. He had the main unit by him and I had one by my side of the bed and one in the kitchen and one by my desk, so that all he'd have to do was kind of whisper like I need your help, so that all he'd have to do kind of whisper like I need your help and and I could get to him um, without him having to go to the stress of calling for me or yelling for me meditating I did some meditating.
Speaker 1:I'm, my family and friends are like really you. You took the time to meditate. I I guess that's maybe just a sign of how stressed I was that I was making myself take the time to do that. That was very helpful, and I'm also someone who needs to walk, not because I want my 10,000 steps a day, but because I get antsy and if I don't move or swim I go a little nuts. So those were my forms of healthcare. I was also very fortunate and maybe this was because of COVID, and everybody was sheltering in place and had their special COVID pods and balls. But people were wonderful about reaching out via phone, via text, via email or taking you for walks where we're standing 10 feet apart. We were a subject of a lot of people's attention and that was a huge blessing.
Speaker 1:I'd go for a walk and I'd come home and there would be a bag of bagels on my front doorstep or a bouquet of flowers. Or one time I walked in and there was a meal on my dinner table. Someone knew that I had been away on a walk and had come in and left a hot meal for me, so I was very fortunate that way.
Speaker 2:Very nice.
Speaker 1:The support system is important.
Speaker 2:Let's talk a little bit more about your book. It's a really engaging book on my way back to you. So what inspired you to write a book about your experience?
Speaker 1:Well, I've said that I journal and, after all was said and done, there was a lot that I needed to process about Ben's experience, about our experience. Ben calls it my book, my story, I call it his book. It's his going on the hero's journey. He started out great. He got really sick, he had to leave home, he had to endure a lot of adventures while he was gone, and then he returns home a changed person, with a lot more adjusting still to come. But I needed to process things like having missed the fact that his hip was broken when he left home as his kidneys were failing, and that was. It wasn't an oversight, it was that we were overwhelmed by how sick he was.
Speaker 1:He had so much going on. I did notice a couple of days before his kidneys failed that he was popping ibuprofen like it was jelly beans and I asked what was going on and he confessed that he had fallen asleep on his way back from the commode to the couch at two in the morning and gone over like a tree in the living room.
Speaker 1:He was sleeping on the couch because he was sleeping so restlessly at that point that he didn't want to fall out of bed. Three feet from the bed to the floor, but 18 inches from the couch to the floor made a little bit more sense to him. So here I am, his caregiver, and I missed that. He had a broken hip. He probably never, because of his autoimmune issues, we're not sure that he ever would have been accepted as a heart transplant candidate, but he was in the hospital and we forget that at that point of the pandemic you'd drive in your car to get a COVID test. Someone would scratch your brain with a cotton swab and you had to then wait for three or four days before you got your results.
Speaker 1:So the only people who were being taken into the OR were emergency situations car accident victim, a gunshot wound situations, a car accident victim, a gunshot wound, or in the case of the transplants, that happened that spring, at least at the hospital where Ben was, people who were already in the hospital so sick they were dying. But the hospital knew they were COVID-free and they would take them into the OR when unworking became available. So I needed to process that he shouldn't have gotten a transplant. He got a transplant. He also, oh my goodness, never would have gotten a transplant if anybody had known about the broken hip.
Speaker 1:So there was a blessing in our having missed that. There was a lot to go on and the part where I had to take care of him on my own I go back to. I'm just an English major and they trusted me with keeping him alive. That was my responsibility and that was an overwhelming thing. I was lucky enough to be able to break it down into smaller pieces and handle it and get help when I finally needed it. But going into it I didn't know that was how it was going to turn out.
Speaker 2:I know your book has gotten a lot of accolades. I saw the quote from Kathy Lee Gifford and that was a wonderful quote. I'll summarize it. It said something to the effect of, after reading that book, well, she didn't know you, she'd like to know you, and I thought that was a very nice quote from Kathy Lee.
Speaker 1:Yeah, I'm hoping to meet her one day. We'll see.
Speaker 2:And others. It is a very engaging book. She and others it's just been. It is a very engaging book and you know you've gotten a lot of really interesting people that have read it and enjoyed it, and so I do encourage folks to pick this up. It is worth reading.
Speaker 2:And one of the things in the book that you talk about is some practical advice, and I kind of would like to go through that. So I'm going to, you know, quote some of the or not quote them, but just kind of go through the list, and then I'm going to ask you to kind of answer each of the three things or each of the four things separately you talk about, in dealing with all of this and just trying to cut through this maze, what questions to ask, you know, and I thought that was an excellent way to word that what questions to ask, and I thought that was an excellent way to word that. Then, what notes to take, so what signs that you shouldn't overlook and making sure that you have soft gears. So let's start back at that first one. In this situation where you're having all of this input from all different sources, what questions?
Speaker 1:What are the questions that we want to remember to ask? You need to ask what they're going to be handling and what you're going to be responsible for, and will there be for lack of a better description continuing education Phone numbers? How do I reach you in an emergency? What does an emergency look like? When Ben got his PACE name, we needed to know what a? I don't know what they call it. I call it a correction, but if his pacemaker was triggered, what were our responsibilities at that point? So you just, if you don't know the answer it's not a stupid question Ask.
Speaker 1:If it's something that's going to keep you up at night. Ask, don't. Don't hesitate to ask the questions, ask for help those are excellent questions.
Speaker 2:I want to kind of circle back to that first one of making sure that you're clear on what are they going to do and what are they are you expected to do. I wanted to circle back to something that you talked about earlier and with insurance and saying okay, the insurance was providing some folks to come in and help out and change the dressing and things like that. Typically, insurance is going to provide whether it's Medicare or, you know, you were too young for Medicare, I believe, so you were on regular insurance and so it's going to provide what we would usually refer to as skilled care, in other words, a nursing assistant, a nurse, a physical therapist, things like that. Is that, primarily, they didn't provide. Insurance wasn't paying for somebody to come by for hours a day to help them get dressed or to help them shower, things like that. That was not the type of things that insurance, I'm guessing based on my experience that that's accurate.
Speaker 1:It was, yeah, pt which ended up not being useful. I mean right from the start. When it came up for rehab, a PT person came by a couple of times and she was wonderful that he finally said, like with the broken hip without no guidance, I can make this worse rather than better the broken hip without guidance and I can make this worse but rather than better.
Speaker 1:But he was also great about saying like here's, when you are able to get in the shower, this is going to be the best way to do it, and then just giving us you were newbies um, giving us some basic information. But gait belt I had heard of gait bounce before and maybe it's because I write um. I'd always heard it as g-a-t-e um and when I finally realized that it was g-a-i-t and it has to do with how a person walks, it has to do with their gate yeah, it made a whole lot more sense to me.
Speaker 1:But teaching us how to use a gate belt, a home health aid was supposed to come by to help with a shower, again with a broken hip and not being able to move around. We didn't do that. We were, we were dependent upon, but I think must have been an supposed to come by to help with the shower, again with a broken hip and not being able to move more around. We didn't do that.
Speaker 1:We were, we were dependent upon, but I think must have been an lpn license practice to come in and change the dressings and in an ideal situation that person would have visited right before the home health aid. Then, you know, the home health aid would have visited right before the lpn. So if we'd known when the lPN was coming, I would have been able to get him in and have a shower with the help of a home health aid, and then we would have the licensed practical nurse to apply the various medications and set his dressings.
Speaker 2:And I think that goes to your point about asking the question of what's going to be covered in LAT, and I think that's important for our listeners to remember that you know sometimes you're going to have to supplement it with other things, whether it's family, whether it's paid caregivers, paid out of pocket, things like that. But the big question I think is a really important question that you raised is what are you responsible for? You know, whatever the caregivers are coming in, the skilled people that are coming in, what is your job? What are you responsible for? What are the outer limits? When are you going to be able to do your job? You raised some very good points there. We can't do physical therapy under these conditions or traditional physical therapy under these conditions to actually make it worse. That's a really important question. That's a really important question. So I just wanted to highlight that because I agree with you Asking the right questions for older folks and our clients.
Speaker 2:Sometimes the families are dealing with a dementia diagnosis. One of the things I always encourage our families to ask more questions like can you give us an idea of what we think the specific diagnosis is, rather than just sort of generalized dementia? And I think that's what you're going to. You want to know as much as you can and sometimes if you don't ask the questions you're not going to get it. If you hadn't, you know, if the look on your face when your nurse was going on vacation wasn't, you know, a little bit of panic, you know there might not have been that education to say I'm going to get you through this and so those are and there's a learning curve to dealing, to learning.
Speaker 1:Here all the various agencies are.
Speaker 1:And I thought that I was just going to be dealing with the rehab facility said we're your central information system. If you have any problems you can call us. But there was also the healthcare agencies, and then there was like a middleman or inflated agency that would call and say we're calling on behalf of your insurance company to make sure that you're actually getting the care that you're supposed to be getting. I had no idea who that was or that such a thing existed. So there's just more and more people called in in their official capacities and I had no idea who they were or what their capacities were, or how that system worked, was structured, much less how it worked.
Speaker 2:The next one on here is what notes to take, and I think that was an interesting one. I hadn't thought of it that way, but you wrote down what notes to take and I want to inquire more about that.
Speaker 1:I was taking notes at all of Ben's doctor's appointments from the beginning, partly because that's how I manage information. I hear it better if I write it at the same time and that would also give us the material we needed before we go back to the next appointment to say, okay, here's what you said last time, here's what's happened since. How do these things connect? How do we make progress on this?
Speaker 1:One of Ben's earliest doctors in all of this, as I'm taking notes and I'm writing numbers down blood numbers and such stopped and said I can see that you are taking this down and I can tell I can take yours and Ben's temperature right here, right now. You think that you can improve that one number? You can't. That number is what it is and that will be that number for the rest of Ben's life. So it was an educational part of my taking notes also showed the doctors that we were paying attention in and that they would take the opportunity to educate us further about different things, not just what questions they might inspire about different things, not just what questions they might inspire. It was also important to be able to look back and say here's when he started this medication and it was those kinds of things, or here's when that symptom started.
Speaker 2:That can be very important. It's one of the things I know families that I work with struggle sometimes is sometimes for the legal and sometimes for the insurance or benefits. We need to know the progression, we need to know certain dates, and that's often can be a struggle for families because they're going through this whirlwind of everything that's going on. So I agree with you if we can, you know, keep good notes and especially keep it kind of a timeline of things that that can help and it can also help you keep some perspective. You know, talking about everything that had occurred in the one week time period that you were referencing when you first came home, that can be helpful to kind of have that. This is the timeline that we dealt with there. The next one you have is and I think this is really interesting too signs not to overlook. So I'm curious if you could tell us more about that. What are the signs not to overlook?
Speaker 1:They can be really subtle. In Ben's case, the first sign that anything was wrong with him was he had always been able to just whistle with one hand. And when we're at a wedding and they introduce the bride and groom after the exchanging of vows and everyone's applauding what Ben does and I automatically my hands go up over my ears because I know he's going to do it.
Speaker 1:He's going to do this ear-splitting whistle and I see out of the corner of my eye that, instead of just doing it this way or this way which he never did he reaches up like this and then he holds his fingers closer together. And I didn't ask about it at the time, I asked about it in the car on the way home and he said it's just, my fingers are a little swollen. And what do you mean? Your fingers are swollen? That's really weird. Oh no, it's okay, and I said is there anything else? Oh well, yeah, they kind of change color when I'm cold, or when I go from cold to heat.
Speaker 1:I'm cold, or when I go from cold to heat, and so I ratted him out a couple of weeks later when we went to get our flu shots and our doctor said you know, gee, Ben didn't mention that, but I'm not giving him his flu shot today. We're going to do these blood tests instead. So we were lucky enough, by my having nudged him and ratting him out, to have his autoimmune diagnosed before what is typically the initial symptom of that particular autoimmune had even been evidenced. And so you have to trust your gut. I mean. I'm not saying be paranoid, I'm not saying go onto the web and search every little thing, but if something's odd, speak up and ask about it. I also. I would say ask about it rather than look it up on the internet.
Speaker 2:Right, good idea. And then we talked about this one, the fourth one, which is self-care and self-care for the caregiver spouse. So anything else you want to add on that, because I do think that's incredibly important.
Speaker 1:The statistic that you were citing about caregivers pre-deceasing their patients. I've heard that and I've seen it twice in our family my father pre-deceased my stepmother while he was caring for her, and Ben's father pre-deceased Ben's mom um, under the same things and it's. You need to not forget that that you are a human being with needs. Don't hesitate to ask for help. Don't hesitate to uh, forgive yourself. You're not going to. There is a learning curve and um, you're not going to get things to do with caregiving perfect on the on the first go round. You might with caregiving perfect on the first go-round. You might not get them perfect on the eighth go-round either, but be forgiving of yourself and of others who reach out to help and support you. The sanity aspect of it is crucial, absolutely.
Speaker 2:Well, sarah, this was a very interesting conversation. Thank you so much for writing the book. It is available on Amazon, so if you would like to pick it up, that's one of the ways that you can find. It is on Amazon. Anything else, sarah, that you'd like to leave us with for families that are dealing with this, or a lot of the listeners to the podcast are actually people that are, you know, in the health care industry, so social workers and therapists and things like that listen to the podcast, are actually people that are, you know, in the health care industry. So social workers and therapists and things like that listen to this podcast. So anything that you want to leave to either the family, caregivers or the professionals that work in this industry.
Speaker 1:First, to the professionals. I do have a few friends who are doctors, who have read it, who have thanked me for writing it because they said you know, you learn about it in med school. You're supposed to pay attention to the patient and the families, um, but it's a reminder, um, especially one very good friend of ours, uh, who's been in the or thousands of times.
Speaker 1:He said I forget that it's my job, but for you it was a miraculous thing that he came out of the OR as well as he did, and the other thing that made our miracle possible is organ donation. If you are considering being an organ donor, please let your family know that that's something you feel strongly about, because for us, a family, in what has to have been their darkest moments, made a decision that made them, that enabled our miracle and also, I believe, enabled them a miracle for at least four other families because of the numbers of organs that were able to go out, and the ripple effect from that it's not just. It's not just a heart, it's not just a kidney, it's not just that one patient, it's that patient's family and friends, it's not just a kidney, it's not just that one patient, it's that patient's family and friends. It's really really powerful, and we are so grateful to those people for making that decision in a really terrible moment, absolutely.
Speaker 2:Well, thanks again, sarah, and for our listeners, don't forget to subscribe. You can listen to this podcast on any place that you can find podcasts. Will you find us there? Or you can go to our website, manorlawgroupcom, and there is a link to the podcast or, like I say, any podcast service that you use. Don't forget to subscribe so that you know when the next interesting topic will come out. This was very enlightening, sarah. I appreciate everything that you've done to spread the word and share your story.
Speaker 1:Thank you, Bob. I was glad to be here and I really appreciate your giving me the time and the forum.
