A Heartfelt Story of Love, Caregiving, and Recovery

Welcome to the Living to 100 Club Podcast. Well, hello to everyone joining us today on our podcast. You're listening to one of our Successful Aging episodes this month on the Living to 100 Club program, and I am your host, Joseph Casciani. Each program, our conversations educate and inspire, helping you get the best out of all the years we're given, regardless of what obstacles come our way. You can learn more about our club at our website Be sure to take a look at my new training and activities manual, Better, Longer, and Happier: A Guide to Aging with Purpose and Positivity. This is a series of 12 modules in a card deck format developed for activities directors at senior living communities to learn more about psychologically healthy aging. Modules 1 through 6 are now on sale, so please visit the website livingto100.club /BLH. Now on to today's program. On today's podcast, our guest Sarah Cart shares the journey of her husband's acute medical illness and serious decline during COVID and the toll it took on her and her entire family. From kidney failure, hip fracture, and congestive heart failure to a heart transplant cardiac rehabilitation, and recovery from painkillers, Sarah's husband Ben experienced an onslaught of hospitalizations, surgeries, and near-death experiences. Sarah recounts this journey in her new book, On My Way Back to You: One Couple's Journey Through Catastrophic Illness to Healing and Hope. We discuss our guest's unexpected role as caregiver, struggles with COVID lockdowns during the hospitalizations, learning the challenges of home health, and other trying episodes. We also hear about the upsides to this struggle, the favorable responses to the medical care Ben had, and the positive lessons she can share about caring for other with other caregivers. First, a little background. Sarah Karrt was raised and educated in New York and New England and wrote for multiple local publications while she and her husband Ben raised 4 sons in northeastern Ohio. Upon becoming empty nesters, the 2 moved to the Florida Keys, but they returned every summer to the Pennsylvania Poconos where each had lifelong family connections. Then came COVID-19. The pandemic, combined with Ben's health issues, necessitated their sheltering in place in Florida for the entirety of 2020. In the wake of Ben's undergoing miraculous life-saving measures, they have been afforded the unanticipated gift of a future, and more than ever before relish their time spent with family and friends. Sarah, welcome to our program today.

Thank you so much for having me. It's an honor to be here.

Oh, you're most welcome. I always like to open by asking our guests to tell us about the journey that brought you here today. I guess that's, that's why you wrote your book. You've been through a lot. Can you, uh, can you give us, uh, maybe a summary of how you are here today?

Well, it's, it's the overview is that Ben and I met in college, married, raised our 4 sons, and we're living the dream, which in the thick of it we called controlled chaos. And then in 2017, he was diagnosed with his autoimmune disease. We were told that it was incurable and all we would be able to do is treat the symptoms. So that's what we did, sometimes well and sometimes not. And it migrated from organ to organ. And with each new issue, we managed by fits and starts to catch up or keep up until he went into congestive heart failure and ended up with a pacemaker, which is when it all really became real and we understood we were in trouble. When the pacemaker couldn't keep up, we were told that his only hope was for survival would be if he got a heart transplant.. And whether or not he could get on the list was an open question because of the autoimmune. So when 2020 arrived, we were working on that, getting him on the list, and we were losing ground. Ben was obviously dying. He was in pain all the time. Our every conversation began with my asking, what hurts? How can I help? And We were doing a round of home IV antibiotics for infected wounds in his ankles. There was talk of amputation. He wasn't able to sleep. He was constantly exhausted. He was taking falls. He had no executive function. And then 2 weeks after the world shut down with COVID his kidneys shut down too, and he ended up in the ICU at the Cleveland Clinic in Weston, Florida.

Wow.

COVID protocols meant he couldn't have any visitors, and his status changed hour by hour. He made it onto the list, then he was off the list, then he was back on the list. Then he was about to go off the list again when we heard that a heart had been allocated, which was a miracle. And then 10 days after that, they asked, "Has anyone mentioned this broken left hip?" And it happened during those ones, one of those falls before he'd gone into the hospital, but he'd been so sick, nobody had figured it out while he was there. So we couldn't fix the hip until he was strong enough, and that meant that it would have to be after he came home. So he came home after 8 weeks in the hospital and 2 weeks in cardiac rehab in a wheelchair. And because he'd been on oxycodone for the excruciating pain over the course of a month, he was by definition dependent. Um, we had a lot of support, but not right down in the trenches with us. Home healthcare was a cluster, both because of the way we live so far out of the mainstream and because of the pandemic. And we had regular appointments with the doctors at the hospital, so I had to get them in and out of the car and all kinds of things that were challenging. Um, well, they were wonderful about putting us in touch with pain management counseling right away. And once he finally got his hip replaced, they helped us understand when it was best for him to use the oxycodone and then how to get him off of it. But 6 months post-transplant, he'd learned to walk again. He was getting stronger. I could finally believe he'd truly found his way back. And writing On My Way Back to You was a way to process all of that.

Yeah.

It's a, a life and death love story, which because of an extraordinary gift from a family that turned their tragedy into our miracle. How's that?

That's quite an ordeal that you and he went through. How is he doing now?

He's doing fabulously. He takes upwards of 200 pills a week, which he will do for the rest of his life. Um, but on occasion he annoys me, and it's really wonderful.

Wow. Yeah, so I didn't read the title of our program, but let me just Put the Spotlight on a Heartfelt Story of Love, Caregiving, and Recovery. So a lot of what Ben went through was shared by you and the, and your sons, of course. So was there anything that, um, it was somewhat expected, this autoimmune condition. Was there anything that triggered it? Do you have any idea that what brought it on?

I have my suspicions. I mean, of course, the doctors don't say anything definitive, but I think it was stress. Ben has always been really easy, easygoing, a high-energy guy. He's always believed that if you make something a priority, you'll be able to handle it. But 2015 was an economically challenging time for the company that he and his business partner had founded 30 years earlier, and he was worried about his employees. And at the same time, His father, who was Ben's mother's primary caregiver, suddenly became ill and died within 3 months. So, wow. We were long distance arranging for 24/7 care for his mother and settling his father's estate. That all landed on his shoulders. And once the autoimmune took root, it took a while for us and for others to accept that it needed to be our primary focus. I've said that the congestive heart failure got our attention and the attention of our sons. But not until the doctors said heart transplant did the extended family really begin to understand that we weren't just crying wolf.

Wow. Well, and the doctors never confirmed that or never definitively said that was the precipitating factor. And it's hard, I understand.

But yeah, it's— I mean, it's— it's— they say it's not genetic. Um, so yeah, we just take it symptom by symptom and day by day.

And you could see the whole context. I mean, what was going on in Ben's world and the stress and the business and his, his father. So a lot of challenging times. But were there others around to support you? You have 4 sons. Were there?

Yeah, our boys were amazing from the earliest diagnosis, even as none of us understood what it meant. Um, and once we started running the hurdles to get Ben on the list for transplant, they changed their schedules and visited frequently. We were all together in Northeast Pennsylvania, um, for Thanksgiving in 2019. Then because of the pandemic, it was 18 months before we were all together again. Um, other people who were helpful in the thick of COVID both while I was on my own and then once Ben came home, we were blessed by friends and family here, excuse me, friends and neighbors here. Family was far away, but food and gifts were left by the door. And we were Zooming with everyone. My first Zoom call was actually the night Ben went into the hospital. It was a friend's birthday on the West Coast, and I'd never heard of Zoom. And it's amazing to think what an amazing part of, a daily part of our lives it is now.

Yeah.

We Zoomed with our boys and other family and friends and women I'd gone to school with. My Ohio book group got back in touch with me, so I had them. And so many people, everyone was going through something.

That makes such a big difference, I know. And, uh, you learned Zoom soon enough, right?

Yes.

Yeah. So how, how did you cope, or how did you learn what was needed to be the primary caregiver for Ben? What— I'm sure that you didn't get a chance to read a lot of books on caregiving, so how did you How did you learn to take over?

Um, it was little by little. A lot of it was on the fly. But in the greater scheme of things, having watched my dad with my mom when she was dying, my sister when she was losing her husband, my brother's wife when my brother died, um, I, I knew some things about the grace and grit that would be required. Learning the frontline stuff was a lot of trial and error. Um, the grace and patience from various medical personnel who took time to teach me what I needed to know, a lot of which was via Zoom, um, and a lot of which I have since forgotten. Um, administering IV meds, nutrition, physical therapy, wound care. I made lots and lots of lists. Um, I wanted Ben back, so I did what had to be done at the moment, from managing his medications, including administering that IV to changing the dressings on a massive bedsore that needed to heal before he could be eligible for the hip replacement. In hindsight, it's kind of like having been pregnant and giving birth. I've since put a lot of the specifics out of my mind.

Hmm. Hmm. Wow. Yeah. So, you learned along the way and you got a lot of help, of course, but were there times that were just so overwhelming for you, and you just said, I don't know how much more.

Yeah, the worst was trying to coordinate the visits from the home healthcare teams that were supposed to support us after he was discharged from the hospital and rehab. Until then, he'd had 24/7 care from a whole team, and suddenly it was just me. And although various personnel were supposed to come in on a regular basis, between COVID and communications snafus and jurisdictional mix-ups. I was on my own a lot more than we ever thought I would be. It was terrifying and challenging. The weight of being the one person responsible for him was overwhelming.

Did you begin to question whether it was too much for you?

Um, no. What I there were moments where I would think, what, what was it that I said when I was standing at that altar all those years ago? In sickness and in health. Was there a time when I could have said no? And would I have said no? And I kept coming back to, you know, no, I would have, I would have still said yes, even, even knowing where we landed.

Sure. Yeah, not what you wanted, but, um, you wouldn't have it any other way. As long as you were there to help, right?

Right. Yeah. Right.

Were you prepared for the possible death of your husband?

As, as prepared as I could have been. I know so many people who are coming face to face with this kind of thing. Um, there's heartbreak, but you don't realize until you're in the thick of it that this is the kind of thing that can bring you closer as well, and what it means to treasure each day. Um, I said yes to various opportunities to be involved in different organizations, so that if and when he died, I'd have places I needed to be, so I couldn't just be in the back of my closet with my thumb in my mouth. And a lot of that was with Ben's encouragement.

Can you share what some of those organizations were like?

Um, I'm, I'm head of the art— the largest social group here in our community. It's 500 people. Um, so it was rising up through the ranks and And this winter I am the one in charge until May 1st. Um, another one is a women's fishing group. Um, the, the club where we belong down here, I was on the board, things like that.

Good, good. And I know, um, when you and I spoke earlier that you mentioned that Ben had encouraged you to, you know, prepare for the worst and, you know, make sure you knew what to ask him about or what, you know, what preparations were needed or what some of the details were. And, um, just kind of dealing with the reality of the potential realities. And, um, what was that like for you as you were kind of preparing for that possibility?

Not everybody is as lucky as we were. Um, in that we knew we had time to talk about things and what the future would be. Even as I was caring for Ben, he was caring for me, helping me prepare for a time when we thought he wouldn't be there. Um, everything from practical lessons about plumbing and taxes and insurance to heavy conversations about how he wanted us to handle his remains and all of his stuff, which were tough conversations but so meaningful, um, things that would help me power through losing him.

Was Ben the more or less the manager of the finances at home and insurance policies and business items like that, or—

That's how things had settled out over the course of the 35 years we'd been married to that point. You know, I kind of took over Christmas presents and birthdays, took over all the desk work. Um, I managed the groceries and the food. It's just— that's just the way it, it shook out.

So it, it kind of meant taking on some new responsibilities, new roles.

Yeah.

And, um, just in the eventuality that you needed to be more informed about it. But yeah, like you say, that was, that was fortunate because you had the time. You—

yeah, I ended up with a glossary in my computer so that I— a Word document where I could go look up things. Like I could look up the insurance policy by number, see you know, the premiums were due, things like that.

That's what you need. That kind of organization goes a long way.

Yeah, I mean, he'd even told me when I would need to look into Medicare.

So, okay. So I know you wrote your book, a lot of it is devoted to kind of giving recommendations, tips, ideas, insights to other caregivers. What, what kind of things can you share with our listeners that you know, you'd want to pass on to people who might be in similar situations?

I think one of the most important things is to develop some sort of faith practice. It's a version of strength training. It doesn't have to be a church or a synagogue or a temple. It can be yoga or meditation or even breathing exercises. Um, something through which you find blessings and grace and grit, because in the thick of the battle you'll need somewhere to plant your feet so you can stand up strong. Mhm.

So what did you use?

Um, I didn't grow up going to church, but we raised our family in the, in the Episcopal Church, so I had, um, a lot of prayers in the back of my mind. Um, one was, um, You know, this is the day the Lord has made, rejoice and be glad in it. Even if it was a lousy day, the sun had risen. That was a miracle to give thanks for and try to move forward with that.

Sure, sure. Other ideas, other recommendations for people that may be, you know, facing heavy caregiving burden?

Breathing exercises work huge.

Breathing, uh-huh.

And I, I tend to journal when I'm stressed, so I would journal and I would walk, but at night in the dark, all alone, you can't go out walking. Um, breathing out as much as I could, as if my lungs were a sponge and getting out as much. Um, thinking of all the bad stuff, the sca— the fear, the anger, the grief, those were all being squeezed out of my lungs. And then once my lungs were, you know, I need to breathe in. Trying to breathe in joy and gratitude and peace and grace and blessing and, um, positivity and determination, um, fierceness for the battle. And then exhaling again all the bad stuff, squeezing it out. Usually it only took 2 or 3 times before I was sound asleep again.

Yeah, that's a good recommendation, just to be able to let go of a lot of that. And a lot of it is what's going on in our head. Of course, the worry and catastrophizing, expecting the worst, and let— letting go of some of that anxiety, some of that worry, because it doesn't do anything, even though it burdens us. So exhaling all that with the thoughts and the emotions, and then inhaling the positives, feeling the strengths, feeling the goodness, feeling the things that are going right. And I, I guess that that's an important thing to, to learn, I think, because I as a psychologist, I like to point out that it's so important to recognize there are still good things no matter where we are. There are still good things, and we don't— it's easy to lose sight of the good things. It's easy to put on that tunnel vision and only see what's wrong. So we really need to open up that perspective and see the bigger picture. Yeah, there are a lot of— there are plenty of things that are wrong, but let's find some of the good things, right? Let's find some of the positives, right?

And another thing is share what's going on with people.

Sure.

I tried to be as open as I could and not sugarcoat stuff because I didn't want to ever have to take anything back. I didn't want to say, oh, he's going to be okay, and have to say next that, oh no, they're putting in a second pump or whatever it was, or they're reintubating him. Just trying to make sure that everyone was on the same page. I also, when I sent out regular emails, and those were actually ended up forming the outline of the book, I tried as hard as I could with each email to end on as positive a note, or at least get my frame of mind into a positive frame of mind before I hit send.

Yeah, yeah, I like that point about not sugarcoating. It's so easy to gloss over some of the heavy, heavy topic, heavy subject matter. But, um, you can still be straight and not, right, be pulled into the negativity, but you can be straight about some of the wrongs, some of the things that are not going so well, but also, as you say, ending it on some of the upsides.

Yeah, yeah. I didn't, I didn't want to overwhelm people, but I also didn't want to suddenly have to overwhelm them because, oh, I didn't mention this, this, and that were all going wrong.

Yeah, so, yeah, so tell us about your book. How did— I mean, I guess the emails formed some of the outline, but yeah, um, when did you decide to write it? And, um, how did you just—

it, it was a way for me to process all that we had gone through. Um, once Ben had passed the 6-month mark, um, and which should have been, uh the post-transplant marker where we could be more social. Um, but because of COVID vaccines, they were still being developed, so that wasn't a possibility. We were still isolated. Um, we were so happy to be together, and I needed to get all this on paper. And, and as I was processing it, it became obvious to me that Ben had taken the hero's journey. He'd He'd had to come to terms with his declining health and a crisis. He'd had to leave home to venture forth and have this fantastic experience in the belly of the beast in the midst of the pandemic. And then he returned home and had to adjust to the new person that he had become. But the initial version of the manuscript was actually pretty raw, which is— when I then worked with ghostwriter Glenn Plaskin, who helped smooth the rough edges and fill in some of my blind spots.

Yeah, and it's a long book. I have a copy here. I can put it up in front of the camera. I see you have it, uh, behind you as well. Yeah, um, it's a great book. It's, it's not a quick read, 300 pages, but, um, I think it's so useful for readers, other people to learn what you went through and probably to identify with a lot of your, your frustrations, your struggles, your, your successes.

Yeah, well, it might be good for insomnia too.

Yeah, well, you know, it's, it's a, it's a, it's a therapeutic process too, right, for you to absolutely kind of unload and put a lot of that into writing. And you mentioned you were doing journaling as well along the way. Did you keep your journal write-ups, or I've read where sometimes it's okay to write for 30 minutes and then tear it up or erase.

Oh no, I have, I have bound books.

Yeah. Okay.

Yeah.

Okay. How long would you write?

How long? Um, sometimes only, sometimes all I wrote was the date and, and my base heart rate, depending things were really kind of crazy.

Okay.

Yeah. Um, if I really had a lot of unloading to do, maybe half an hour, but typically 5 to 10 minutes. Um, and again, like the emails, I tried to get the, get the ugly stuff out on paper and then pull myself up by my bootstraps and tell myself, come on, let's do this, you can do this.

Yeah, and lighten the load too, I'm sure, to get that out.

Yeah.

Yes, just like the book. And the book is being, uh, released this month, is that right?

Yes, yes, April 2nd.

Yeah, well, that's today.

That's today.

Congratulations.

Thank you very much.

Congratulations. Yeah, but you were also a writer earlier in your career?

Yeah, I wrote, um, I'm really good at a 500-word arc, uh, lifestyle stories for the local paper in Youngstown, Ohio, and then here where we are in Florida.

Yeah, yeah. So, well Okay, so again, the book is On My Way Back to You: One Couple's Journey Through Catastrophic Illness to Healing and Hope. Sarah, some takeaways for our listeners? Any points that you really want them to remember from this conversation?

Everybody is going through something. Treasure each day, which sounds like such a cliché, but really it comes back to that. Rejoice and be glad in it. There is always, always something for which to be grateful. And on that note, organ donation is an unbelievable thing.

Yeah, yeah, that's— that doesn't come up very often about— I mean, it's so important. I wonder why people are reluctant to agree to that.

Yeah, it's part of accepting that we are not invincible, I think.

Mm-hmm.

Yes, it's one of those hard conversations.

Yeah, well, of course, that's only the tissue. It's not our soul or our energy or our life, our spirit. Yeah, yeah, yeah. So how can people buy a copy of the book?

Um, it's available wherever books are sold. Okay, if they don't have it on in stock, they can order it for you.

Available on Amazon, most likely. Yeah. Okay. All right, so just to recap, um, those takeaways: everybody's going through something, treasure each day, and there's always something to be grateful for. And I also want to emphasize the point you made about sharing with others and not trying to carry the whole burden yourself, and yeah, being willing to share. Not that you're asking people to take on your load, but it does ease the burden we're carrying when we can share what we're going through.

Yeah, it's a little bit like, like letting the pressure off the top of a propane tank.

Yeah, exactly. Yeah. Well, thanks so much for being a guest on our program today. I just want to remind my listeners to visit my website, LivingTo100.club, sign up for my email list, and download a free copy of my 9 Tips to Make Living Longer Enjoyable. And if you're affiliated with a senior living setting, be sure to look for our new training manual, Better, Longer, and Happier. Sarah, thanks again for being a guest on our program, and good luck to you with the book sales.

Thank you very much. Thank you. I really appreciate being here today.

Oh, great. Glad to have you. Thank you.

Thank you.