The Other Side of Caregiving: Grief, Vulnerability & Finding Joy with Lindsey & Thomas Kealey (315)

0:01What we found through all of these hard circumstances is we start with the gratitude, no matter where we are in life, no matter what's happening with his body. And if we can center ourselves and delight in something, whether that's just looking into each other's eyes and smiling, whether it's watching a funny video or taking a walk around our neighborhood and looking at the trees changing colors, I think we're learning how to find gratitude. And that's where our joy comes from versus waiting for something amazing, something extraordinary to happen to find joy and gratitude. So I think that's been a beautiful thing is the preciousness of life and the understanding that gratitude is so important and that leads to joy.

0:42Ann Kelley: Welcome to Therapist Uncensored. Building on decades of professional experience, this podcast tackles neurobiology, modern attachment and more in an honest way that's helpful in healing humans. Your session begins now with Dr. Ann Kelly and Sue Marriott.

1:04Ann Kelley: Welcome back to Therapist Uncensored. I'm Ann Kelly. You know, most of us will spend some part of our lives caring for someone we love or being the one who needs the care. Maybe it's happening right now for you and your family. Maybe it's still ahead and you're anticipating it. But when it does, the hard parts are rarely the ones we expect. They're often about our relationships, about losing track of ourselves, and about not having anyone to talk to who understands. That's why I wanted to talk with Lindsay and Thomas Keeley today. Now, Lindsay, you might remember, was here before to talk about social-emotional learning and the three C's, connect, calm, collaborate.

1:43Ann Kelley: This time, she and her husband are sharing what happened when those ideas were really tested in their own marriage during an illness that has changed everything in their lives for them. I don't want this to just be a story about them for you to listen to. I want it to be something that can help you think about what's hard in your own situation, what has worked for them, and what they wish someone had told them sooner. Lindsay, so glad to have you back on the show, and welcome, Thomas, to Therapist Uncensored. Thank you so much. Thank you so much for having us. Lindsay, the last time you were on the show, and boy, we just figured out that was in 2021.

2:21Ann Kelley: That's just crazy. It's been that long. Episode 165. That was fabulous, by the way. I am encouraged people to check it out. But we were talking about how to deal with super intense emotions, primarily with kids, but also for adults when things get really rough. And people love that episode. And I imagine the two of you have had a lot of opportunity to put this expertise into practice over the years with everything you two have gone through. So tell us a little bit about your experience. I really appreciate the two of you coming on and talking about the last few years. I know it's been super difficult and I just think you guys are superheroes to be on and ready to talk about it and share so that we can all learn from your experience.

3:09Well, thank you so much. It really has been such a wild ride since I last saw you, since we last did our interview. At that time, I was really in the world of trauma-informed education, working with students at OSU Cascades who want to be educators, also working with teachers in elementary schools. And I really had this focus on social-emotional learning and having a trauma-informed approach. And then just a few years later in 2024, I found myself stepping out of the classroom. And Thomas is a registered nurse. he found himself having to step out of his role as a nurse as we became caregivers for his mom, who was diagnosed with terminal pancreatic cancer.

3:47Julie, such a wonderful woman. We lost her last year, but it was a world when we really didn't have anyone super close to us who had gone through cancer treatment. We had not found ourselves as caregivers, at least outside of Thomas's profession. And so here we were in this new world helping take care of her. And then just three months later, Thomas was diagnosed with a very acute, aggressive, acute leukemia. And so then Thomas found himself not only as a caregiver, but now as a patient. And it was just such a different world. I mean, it's hard to describe what it's like unless you've gone through cancer or another serious illness.

4:23It's such a unique experience. And we found ourselves learning so much from that. We understand trauma on a totally different level and a different way now. And it's been our passion, Just like when I was here back in 2021, wanting to inform teachers and educators to give them strategies, our goal is to help people who find themselves as patients or as caregivers to give them hope and them strategies to navigate those hard emotions, because we certainly find those here in the cancer realm.

4:49Ann Kelley: It just changes your life. And it's one thing to be talking about something, another thing to dive so deep in it. And so many of us out there find ourselves in the role of a caretaker, like you said, of our parents and how that changes our life and our relationship. And y 'all moved right into that. And from that, something that happened between the two of you, that was a lot for the two of you to hold. It really was something that we've learned. It's a both and in so many parts of life, especially with chronic illness, you have both difficulty and we're going to talk about pain versus discomfort, but most people think of the word pain.

5:28You have that, and then you also have beauty. So it's both pain and beauty. And they seem to come along each side. They seem to go along together as you are experiencing really hard things. But at the same time, you see the beauty and the preciousness of life and to a level that we would have never experienced had we not found ourselves here. So I think that's been a unique situation to find ourselves in both places at once.

5:50Ann Kelley: I imagine. And Thomas, for you, wow, what a combination first to have to experience the grief of this terminal illness for your mom and all of the things that that shifts in the way we think about the world and our foundation. And I can imagine how hard that was. And then for you to flip from that, from the medical provider and caretaker to one that needed the care, what was that like for you? It was a lot. Yeah. Getting that initial diagnosis for my mom and yeah our whole family was just shaken to our core it was a devastating to hear that and you know we immediately started viewing the days we had left as precious and knowing that whatever time she did have we want to spend it intentionally being present and making memories.

6:50But then, yeah, I got diagnosed a few months after her. And you're right, I had to switch from being a caretaker, which is, like you said, I'm an RN, and it's kind of natural for me to want to step in and play that role. But becoming the person who's diagnosed and being the patient was really backwards to me. I really had to let a lot of things go. And I think kind of rethink who I am, my identity, not being so much tied into this, that I'm like, I'm a nurse, that's who I am as defining me. But being like, this is the person I am. Who do I want to be? Do I want to be kind and patient and informative and loving?

7:37Focusing on who I want to be rather than what I want to be kind of became the more day-to-day thought process of going through recovery alongside with my mom. I'm blessed to be able to have her to be able to go through that with, that I was able to go through that with her. And she felt the same way that we wouldn't have wished this on either of us, but becoming cancer buddies and making our own little cancer club with Lindsay being one of the main proponents of it too. She's our president caretaker. We all found ourselves in a situation we've never imagined being in. And having the support of our other family members, and especially each other, was really a blessing to be able to walk through it together.

8:29Ann Kelley: I imagine. You mentioned the transition, and I can just so imagine being the one that is the nurse and the caretaker. Then you moved into that role with your mom. And then you mentioned that shift. What was hard about that shift? And is there anything that you can recall that helps you move over to acceptance? I think just accepting that I don't need to be the one helping out all the time. It's kind of a control thing. As a nurse, you have your patients that you're assigned and you more or less are in control of that environment and situation and when her meds do and what care looks like, it's your responsibility and job to carry out the orders of the physicians to treat and care for an individual.

9:21And stepping into the patient realm and letting my mom's oncologist really run the show for her treatment. And my mom is pretty medically savvy too. She worked at St. Charles Medical Center as a RHIT, which is a registered health information technologist. She did that for 30 years. So she knows all the jargon and she knows a lot medically. She actually would train nurses up in that department that she was in. And so I think cognitively make boundaries and trust that the professionals are doing their job. But of course I have questions. That's okay to ask the providers, why are we doing this this way or that way or whatnot?

10:09But I think ultimately having to let go, open up your hands and trust that the system that you're letting help you recover. So trusting our physician's assistant and our medical aides and we trusted hospice house there at the end. I think instead of feeling like I need to be in the front lines, making sure everything goes right, just allowing those entities to do the beautiful job that they do and just appreciating it. It's something, Thomas, that makes me think of too, as you've mentioned before about your identity, tying into you when you're back into working as a nurse again, when you're medically cleared, his immune system has been compromised with this most recent treatment.

10:58So we're waiting for those blood counts to recover. However, Thomas has said that with each of these experiences, it's like another key has been added to his big janitor key chain. I love that visual. And so with his first cancer and his mom's cancer, and then when his cancer relapsed around his brain, all these things are experiences, keys that he can unlock other patients and people's inner world. So when he finds himself at bedside and he has a patient who's sitting there waiting for maybe a big surgery or some uncertainty about the tests that they're going to have, he can say, I know what that's like.

11:32I've been there before. So you have a window into so many people's realities and experiences. And you've mentioned before, Thomas, how that has been so valuable. That's been one of the things that's allowed you to accept whatever hard thing comes your way. It's another key on your key chain that you can use to reach more people. And it seems like that's been a blessing. Yeah. One of our favorite phrases that we use a lot is, if I'm going to go through this, I want to grow through this. And we bring that one up almost every day, just with every new speed bump we hit or hurdle we have to jump. We come back to there's an opportunity to grow in some way, shape, or form through this experience.

12:14And we have to consciously choose to frame it in that way. It's better for our mental health. It's better for our evolution as a person than a human. And that's kind of an attitude we really try to take every day and apply.

12:33Ann Kelley: That's really beautiful. And I imagine some days are easier to hold that than others. And sometimes the days, you know, you talk about not always having the answers and the control. And I imagine there's times that the two of you supporting each other, you could really help yourself maintain that. And I imagine sometimes it's been, with all that y 'all have gone through, it could be a real challenge as well. So you mentioned a little bit, maybe you could just, I know y 'all have gone through so much in the last couple of years, but maybe just kind of give us a summary, if you would, for those that didn't track all that.

13:15Ann Kelley: So you had the diagnosis with your mother-in-law and your mother, and then three months later, yours. And then what has happened since then? And then let's talk about what it's been like for the two of you in your relationship and how that's changed and what's been the great things? What's been the challenge? What have you learned? So there has been a lot. As you mentioned, Thomas had that diagnosis and right away we had to pack up our bags and get to a hospital. We've been blessed to go to Oregon Health Science University or OHSU. It's about three and a half hours from our house. So we had to pack everything up and they said you'd be there for probably four to six weeks.

13:54And at that time we thought, wow, wow, that's a long time. And now we know that is not a long time. We've been in this for about two and a half years. At one point we spent, I think, 120 days consecutively there. And so it's been a journey. Thomas was blessed to be matched with a donor. He needed a bone marrow transplant. So his first round of treatment was not effective enough. And they decided he was most likely going to achieve remission with a bone marrow transplant. So they did a search. We asked his brother if he would get tested. We called it the great burrito bribe. We had him come visit us at the hospital and we had breakfast burritos.

14:31And we said, Hey, how do you feel about getting tested to maybe let me borrow some bone marrow? So it was kind of funny, but he was not a match, unfortunately. So then became a waiting game. They were looking across the country around the world for someone who would be a match for him. And so finally we found a German donor. I believe she was 21 years old. We don't know her name. We can actually meet her or get matched with her in a couple of weeks. After two years, you can reveal your identity to one another. So we're so excited. We've been pen pals for a couple of years. So it's, it'll be really neat to be able to actually have a phone call or even go visit her someday.

15:07Ann Kelley: You've been pen pals, but without being able to reveal the identity. Right, right. They block out our names. It's been so cool. So the bone marrow transplant required a lot of chemo, a lot of radiation. So this was, I would say one of the hardest times in his journey in order to have, they call it an allogenic stem cell transplant. You're wiping out your own immune system to make way for a donor's immune system and their stem cells. So that was really challenging physically for him and also emotionally for us. He had a successful transplant. He engrafted, meaning that his body accepted the donor cells.

15:45So we were celebrating. But then on Christmas day, we got very bad news. My chart automatically sent us a notice that his lumbar puncture, which is a procedure where they take out your spinal fluid and test to see if there's cancer there. Thomas has a rare cancer that will try to sneak its way into your central nervous system, which is really scary. And unfortunately, unexpectedly, they did find cancer in his central nervous system. So around his brain and spine, which is super uncommon to happen after your transplant. When you have something like that happen, your prognosis goes down into the single digits for surviving one year.

16:23And so we're really glad we didn't know that at the time. We're grateful to our doctor that she kept that little fact, didn't tell us that one. But it was a new season from that point. It involved spinal chemotherapy, intensive radiation to his brain and spine. And that was another chapter recovering from that. He achieved remission again. So his second remission was a beautiful thing and we celebrated that. And I would say ever since achieving that second remission, we've been on a journey of dealing with something called graft versus host disease. And what that is, is when his donor's immune system starts to attack his healthy cells.

17:01So we say that Olga gets grumpy. We named his donor Olga, since we don't know her real name. So Olga gets a little confused and instead of attacking, you know, any cancer cells that try to come back, she'll start to attack his bones or his eyes or mouth, skin. And so that's been a journey. It's an uncertainty of, you know, she'll get grumpy and then his skin has, you know, rash all over. And then most recently we had just published our book. You know, we thought that we had come through the other side and here we are, we can write a book for others. And then just days after receiving our first copies, his bone marrow donor, the cell started attacking all of his muscles.

17:38So this affected his ability to swallow. He couldn't eat food for a few months. He couldn't breathe. The muscles, apparently there's lots of muscles around your lungs. And if those aren't working, then you're not breathing. So that was a really scary thing as well. And then all of the other muscles. So he couldn't raise his arm to brush his teeth. He couldn't put socks on, couldn't walk without a walker at first a wheelchair. So, I mean, that was just back in May of this year. We're now in October and he's recovered all of those muscles functionality. He's went from a wheelchair now to a cane.

18:11We're training for a 5k and he's able to eat food. He's a foodie. So he's so thrilled to have the muscle strength in his throat. So it's been such a journey. We're still on the path with his blood counts recovering, but we've come through so much. And so we have such gratitude for waking up every day for, you know, eating cereal, even being able to swallow that, be able to breathe laying flat. These are things that we are so grateful for since he's come through these different challenges with his body. So would you say that sums it up, Thomas? Yeah, that sums it up perfectly. Yeah. I'm very grateful for every meal that I get to chew and swallow now.

18:50I took it for granted before. And having to have, you know, I mean, Haagen-Dazs milkshakes aren't terrible. There's worse things I could have been forced to eat. but having banana Haagen-Dazs milkshakes to eat for three meals a day for two months. Yeah, it was kind of rough. But it was better than getting an NG tube. They said, if you can't keep this down, we have to put a tube up your nose. It'll go down to your stomach and we'll just have to give you nutrition that way. And I was really not wanting to do that.

19:23Ann Kelley: I mean, that milkshake, give me that milkshake. I'm doing it. Yes. So we did the milkshake and thankfully I got to meet with a speech language pathologist who gave me some exercises to, it's like a physical therapy for your neck. So you're doing chin ups in bed, you know, and finding times throughout the day to like tighten your tongue against your mouth. And it is all these, all these little exercises that helped. And so I weaned myself back on to solid food. And so, yeah, I had a burrito yesterday and it was amazing. Just every meal I have now, I feel like it's a borderline spiritual experience.

20:02Everything tastes so good. The textures are amazing. Yeah, I really appreciate that. Like Lindsay said, I'm a foodie. So, you know, I don't drink or do drugs or anything like that for coping. So food, I think, is probably my primary, for better or worse, a fun thing for me to enjoy. So when that was taken from me, I was like, oh my gosh, like I've got to find comfort somewhere else or find something else to, you know, anchor me. But I'm, like I said, very fortunate. It was kind of like recovering from a stroke. I'm glad I can mobilize. I can sit to stand really well now. I could walk with or without a cane and swallowing and laying flat was another thing that I couldn't do in the midst of that GVHD attack.

20:51If I was laying down flat, I couldn't inhale. And that made getting MRIs and other tests they needed to do pretty tricky. So they had to wait for the steroids to do their thing long enough for me to be able to lay flat so they could make a proper diagnosis. And now I can lay flat. I did a chest MRI yesterday, laid flat for an hour and a half, and I was fine. So my diaphragm is back up to snuff, and same with the accessory muscles that help me breathe. I'm just really grateful that my body's responding the way it is to treatment, because that's never guaranteed. It's brought a whole new level of thankfulness just for the small things every day.

21:37That's something that I've found to be so true. I don't know if Brene Brown came up with this quote at first, but it's not joy that makes us grateful. It's gratitude that makes us joyful. And so I think that what we found through all of these hard circumstances is we start with the gratitude, no matter where we are in life, no matter what's happening with his body. And if we can center ourselves and delight in something, whether that's just looking into each other's eyes and smiling, whether it's watching a funny video or taking a walk around our neighborhood and looking at the trees changing colors, I think we're learning how to find gratitude.

22:12And that's where our joy comes from versus waiting for something amazing, something extraordinary to happen to find joy and gratitude. So I think that's been a beautiful thing is the preciousness of life and the understanding that gratitude is so important and that leads to joy.

22:27Ann Kelley: And what you're saying there is also that the two of you couldn't just hold your breath and wait for this to be over. Like this has been, as you walked us through all of it, I'm sure all the listeners like, wow, this has been quite the process. And I've only had this very distant backseat view of it because we've been working to get this interview for a while and we'd be this close. And if things like, yes, in fact, I think when you reached out to me, you were at the point of, whew, we did it. And then you've had these evolutions that you just described with, oh, we were going to record, but we're on our way to the hospital.

23:01Ann Kelley: And I just feel like I hold y 'all in such deep care and respect through this journey. And when you talked about the initial part, right, because this place of being able to find the gratitude. I imagine some days you can live in the gratitude. I imagine there's some days it might be hard to find when you're laying there and you can't actually lay flat. I'm wondering if y 'all would share your process, both individually and as a couple, through what surprised you? What were the hardest parts? You're saying you packed it up suddenly and took off for the hospital to not come back. That is a huge major life shift for two people that had ongoing careers and life before you.

23:49Ann Kelley: What was that like to be so together as a couple, but going through so much during that first part? So what shocked you? What was the hardest part about that? Yeah. A lot of things surprised me. I learned a lot about medical things. I did not know anything about blood counts. And now I know every type of blood product like hemoglobin and white blood cells, platelets. I'm very well acquainted with the medical jargon now. But I think something that really surprised me was my understanding of grief. I always thought that grief was what you feel when someone passes away. And yet what I've learned through all of these seasons is that grief is really the loss of anything.

24:29And so giving yourself space to grieve, whether it's the loss of your identity, you know, our professional lives. We were really active in our community. The grief of losing our dreams with the path to parenthood that we thought we were on. We were just getting ready to start our journey to conceive. And then that changed due to the nature of treatment.

24:50Ann Kelley: Let me slow you down with that. I think that's a really important statement. And that is like, grief is not about just loss of person. It's loss of so many different parts. you didn't expect to all of a sudden drive three and a half hours away and live in a hotel room. And all of a sudden, instead of being focused on all of the child rearing processes that you were hoping to be in. So how did you cope with those kinds of griefs? You said it surprised you, but what did you find yourself going through and what was the steps to helping yourself really focus on that grief? Yeah. You know, I think one of the first things to do is to accept it.

25:28We talk about gratitude and joy, and those are important. And yet, sometimes you need to allow yourself to grieve. I would find myself thinking, I should just be grateful and joyful right now because we've come this far, right? Thomas has been in a second remission. We've made all this progress. And yet, if I would have this feeling of grief because we're in a place we were going to adopt. So Thomas, I think in one of our emails, maybe I sent to you, we were on the adoption journey for domestic infant adoption. And then he had all of those things occur in his body with his muscles. So we had to stop and kind of change the goalposts for where that next dream was for us.

26:05And so I think what was really helpful was holding space for that and say, being able to tell myself, I am grateful on the one hand, and I am also grieving. Having self-compassion, I love the work of Kristen Neff, treating myself with kindness, being able to say, wow, this is hard, kind of that common humanity. This is hard for everyone when they go through hard things and they grieve. And then self-kindness. So if I am a little grumpy or if I snap or I do something, just pausing and, you know, of course, repairing with Thomas, I'm sorry for the tone that I had with you, or I apologize for how I showed up this morning.

26:38And then also just, again, treating myself like I would my best friend, as self-compassion research shows is so helpful. So being compassionate towards yourself, naming grief and holding space for that. And then something that David Kessler talks about in the grief research, he likes the idea of having a sixth stage of grief, which would be finding meaning. And so understanding that you can take this pain, this grief, and you can find purpose through that has been essential and a lifeline for us. I think it's important not to pole vault yourself out of grief too soon, or to have the feeling of, oh, I need to write a book because I'm going through this hard thing.

27:15But understanding that you can transform this pain into your purpose. This can be something that you are able to, it'll change your life. The dream I had for my life is that we would be parents of two kiddos at this point. And yet the amount of people, the love that we have with our family and the people in our medical sphere, it's such a different type of love that we are grateful for and we're able to impact people who are going through this journey. And so, again, it comes back to gratitude. It comes back to finding that you will find purpose out of this pain and to hold on and have hope. That's one of the messages I like to share with people.

27:51But please give yourself grace and compassion as you navigate this messy process that we call life.

28:06I get asked a lot about mental health resources and honestly access is often the biggest barrier

28:12Ann Kelley: people face whether it's related to transportation cost or even the cultural stigmas of seeking help so I want to tell you about something that removes a lot of those barriers and that's Talkspace. Talkspace is a highly rated online therapy platform, and it does it really well. You get matched with a licensed therapist or psychiatrist within 48 hours. You can access both on the same platform, and you can do sessions from home. You can even text your therapist between appointments, and what's important, it is a licensed therapist responding to you, not an AI. I do a lot of my own individual and couples work online, and I find it generally extremely powerful.

28:52Ann Kelley: People are immediately comfortable in their own space. I love working with couples, for example, as they sit with each other in their own home. And then after the session, they don't have to immediately separate and go their own ways from the office. They can be together and absorb what we've gone through. Talkspace provides therapy for individuals, couples, LGBTQIA plus folks, veterans, teens. They partner with research to make it evidence-based. So Talkspace makes getting the help you need easy, accessible, and affordable. Plus, most insured members have$0 copay. So as a listener of this podcast, you get$80 off your first month with Talkspace when you go to Talkspace.com and enter promo code SPACE80.

29:41Ann Kelley: That's S-P-A-C-E-8-O to match with a licensed therapist today. So go to Talkspace.com and enter promo code SPACE80. Reaching out for support takes courage, and anything that makes that first step easier can make a huge difference. If that's for you, if you've been looking for a psychiatrist, for you or for a client, you know how hard it can be. Good ones are often booked out for months, and when you're ready for help, waiting that long can feel impossible. So that's why I'm excited to share Talkiatry. It's 100 % online psychiatry. You meet with a medical provider for full evaluation, diagnosis, and ongoing medication management for conditions like ADHD, anxiety, OCD, much more.

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31:06Ann Kelley: So that's t-a-l-k-i-a-t-r-y dot com slash tu to get matched in minutes. It's takiatree.com slash tu. All right, let's jump back in.

31:27I imagine that when you're going through grief and you're watching your partner and the love

31:36Ann Kelley: of your life going through so much pain and difficulty, how do you have room for your own groove? Because I know when working with people who are caregivers of other people, you do have your own sense of loss or disappointments or frustrations or sadness. And yet, you know, your partner's going through so much. So how do you give yourself space for that? Was that hard for you initially? Or can that be hard for you to have your own pains and losses and disappointments? And then are you able to share that together? Or is that something I imagine so many people are scared to do? Because like, how can I talk about this when you're going through so much.

32:13Right. I didn't acknowledge my grief at first and I didn't understand that grief was the loss of anything at first. And so when I was able to really understand and get counseling, so I recommend this to everyone. That's why we love your podcast, Therapist Uncensored. Find a therapist as you're going through this. Even if you're in the middle of hard times, in the middle of treatment, some people think, oh, when I'm through this, when I'm finally back at home, then I'll get connected with my therapist. I realized maybe in your second hospital stay, I'm going to prioritize this now. And so with therapy, I was able to realize it is important to realize that both Thomas is on a path and I'm on a different and unique path.

32:50I think comparative suffering can be unhelpful. We can find ourselves, and I found myself in this place too, of, well, why am I grieving? How could I be feeling this way when Thomas is feeling so much more through radiation through this? I mean, he was connected to a pain pump at one point, but then when you pause and realize we're both experiencing grief and difficulty in our bodies in different ways. And how can we support one another rather than comparing? I think that's really an important piece. And then it's beautiful to communicate how you're feeling, to be real with each other. I've noticed as I've talked to other people that they don't want to share their fears because they don't want to have their caregiver or the patient.

33:32They don't want to feel like they're a burden by sharing the fears, the anxieties, the anger that's on their heart. And yet, as soon as I told Thomas, I'm really sad about what's happening. I'm really sad that our dream of becoming parents through natural methods and then when we couldn't adopt at that point because we were back in the medical realm, when I was able to start saying this is something that's really heavy in my heart, it gave him space. Rather than him feeling guilty, he's like, I don't feel guilty. I just feel seen. And I feel like now I can come and share what I'm feeling. So having that connection, having that vulnerability with one another, it's important because it creates space for both of you to share what's happening in your own emotional landscape.

34:15And I think that can be incredibly healing and connecting.

34:18Ann Kelley: Thomas, what makes it, as I'm listening to Lindsay and saying, you know, once I can really adapt that I'm also having pain and you're having pain and we can connect on that, it brought relief. And boy, that makes sense. And what I wonder for you, what are some of the things that somebody going through all of the pain that you were going through, what could you share that you've learned? You know, was it easy to handle her pain when she was like, I'm disappointed? Did you go through guilt? Did you go through, what was that like for you? What were the harder parts of that? And then how did you get through it or how are you getting through it?

35:00Like Lindsay said, we both have our own therapists. So I think everyone in the world should go to therapy. No one would not benefit from that. So wanting to be able to grow in that capacity is something that is very helpful when you come into situations like this. But yeah, being able to be vulnerable with each other, understanding that you are a safe place, you want to be a safe place for that other person and that they can share anything they're feeling or you know whether it's right or wrong just having it no judgment just name it to tame it observation just this is what i'm going through this is what i'm feeling and we'll ask each other when one of us you know starts to share something is do you want me just to listen and be a good listener right now or do you want me to help you problem solve what do you need right now so i can help you out the best way I can.

35:57I think that helps us put a foundation on whatever discussion that might be or what issue we're going through and keeps the problem the problem and puts us on a team together to be problem solvers to want to address the problem. Or if she just wants me to listen, I can be there and listen and say, wow, yeah, that's a lot. Or I can't imagine going through that. It was, you know, I tell her with a lot of the really hard medical things I went through in the hospital being inpatient, it was hard stuff to go through, but they were also giving me like lots of drugs, you know, which I think it helped with a lot of the pain and everything, but kind of silver lining is I don't remember all the hardest parts of it.

36:52But Lindsay had to experience all of that sober as a judge, front row seat in the splash zone, seeing her husband struggling to breathe and walk. And my heart just goes out to her. And so, I don't know, we have a high emphasis on clear communication and clear as kind. We both know that neither of us are mind readers, and if there's a need you have, you need to make that known to the other person, or else they're not going to have a chance to be able to either listen to you or help you fill that need. Everyone wants to help each other. They want what's best for each other. But sometimes if that need isn't clearly stated, especially when there's so many moving parts and pieces, it can get frustrating.

37:41It seems like you're almost on a different frequency trying to communicate. And so I think getting some common knowledge and vernacular for problem solving or expressing needs is huge. and so we took a lot from I like the Gottmans and their studies Brene Brown stuff that's why the podcast we have is called Brain It On so it's a play of bring it on brain so we're brain nerds we nerd out on how the brain works we try to make our communication strategies brain based and follow the science where that goes And so I think we both desire to be better communicators, not just with each other, but everyone.

38:32And learning some of those concepts and the vernacular to share with each other has been huge.

38:40Ann Kelley: I imagine in the way that you described, I could see it touching, Lindsay, as you were describing. I mean, it sounds like this is my expression, Sue, and I use this expression a lot, but you seem able to put her helmet cam on. Like you could see the experience through her lens and sitting there on the sidelines and going, wow, that must be hard as hell. Like to sit there on the sidelines and watch. And so often when we're in the place of the caregiver, we think that the care needs to be just of the person in the bed. and the way you described that is you could really see from a compassionate place from her partner place go she's going through a hell of a lot watching me go through this and giving her room to have her own experience which I think can be really really difficult for so many of us when we think oh my god we're not the one in the bed how can we be complaining and it sounds like you're both giving some space for that to say of course this is your experience too we're doing this together.

39:43I love the terminology care partners. So often we say, yeah, the caregiver or the patient. And yet, as soon as Thomas and I started saying care partners, we're both partners, it shows that there's directionality in both ways. So I'm caring for him because I call myself the pill fairy. I put all of his pills together, right? And I'm also, I make the appointments. I'm like his personal assistant for all of our medical things. So that's the way in which I care for him. And yet he's not just a patient, he's a care partner for me. And so he sees what I'm going through and he cooks for me and he checks in with me.

40:18How's your heart? What's on your mind? And so I think when you say we're both care partners together, it allows us to understand that this can be a reciprocal, beautiful relationship where you're loving each other where you're at. You're recognizing the difficulty that comes with being on both sides and you're there to support each other. So I think the other thing that does when you say we're care partners, it makes us think, oh, wow, the caregiver needs care too. And so what does that look like to make sure that I'm also receiving care? There's a beautiful volunteer at the St. Charles Cancer Center that we go to.

40:50And a very small picture of this is she always comes and says, what can I give you, Lindsay? So she's making Thomas a sandwich or getting him tea because we're there for maybe six hours for an infusion. And then she says, now what can I get for you, Lindsay? I want to see you eating something and you drinking tea as well. So just a small little pivot of how can we care for both because both the patient and the caregiver are both going through different really hard things and how can we wrap around both of them with love and with support.

41:19Ann Kelley: That's so important. I loved when I read that part in your book about the care partners and that's true whether it is a romantic partner, whether it's your parent or a good friend, that to be partners means that you're both in it together and to not forget one another. And I have seen it sometimes when somebody is chronically or painfully ill, that one person basically gives up just about any part of their existence to be there and feels like, how can I do anything else? And y 'all's approach is so full of vitality, even though, gosh, when you describe all of the ups and downs and ups and downs, I imagine you've had plenty of times when you're not only in the positive because it's so painful, but remembering to be there for each other in those really rough periods.

42:14Ann Kelley: If I have to eat another Haagen-Dazs shake, I want to throw it against the wall. I can't imagine not feeling that at times, you know, and it's wonderful to find the gratitude, but sometimes you just have to find the anger and the pain and to be able to be in that together. So I guess I'm trying to remind people, even if it's not a partnership that you're caretaking, it's your mom or how do you let your own experience be part of it without it taking over, of course, but doing it together. I think that you'll have really shown a really wonderful example on that. And I'm going to highlight, you have a book, and I was going to talk about them, but I'll jump in now.

42:54Ann Kelley: It's The Comfort and Healing Companion. And so there's so much to this book as you go through that you've talked about in here, but you even have just schedules and reminders and things like that to track as I imagine that this can be a full-time job. And many of us feel that when we're caretaking our parents or other people we love, that it becomes our whole life. And how do you find that balance? Yes. Well, Thomas mentioned previously that we had a little cancer club when both Thomas and his mom are going through treatment. Julie was the president, you know, paving the way for us with her beautiful energy and joy.

43:32And then I was the CFO. So, you know, I was dealing with insurance and appointments. And when it was just Julie's treatment, my little systems were working. But then once we were dealing also with Thomas's medical treatment, his appointments, you know, at one point his chemo and her chemo were both denied. So then I was on the phone all the time trying to get both insurance companies to please do the right thing. And so it can be so much. and what I ended up doing was creating templates for figuring out what is all the information that you need to know from your employer if you need to take time off of work how do you qualify for medicare if you have a chronic illness and then how do you figure out if you can have cobra insurance as you go on through your treatment so there's so many little business pieces also like tracking symptoms you go to your doctor appointment and they say you know tell me have you been hydrating or what is your nausea on a 10 scale?

44:23What's your pain on a 10 scale? And so having the right documents to keep track of everything is so grounding for the caregiver. As Thomas mentioned before, you know, we're on the sideline and we're watching our patients, whether it's cancer or dementia or any other kind of hard thing, they're doing the hard work. And it can be so difficult as the caregiver to sit there and not be able to help. I mean, so many times I just, I want to take a turn, right? Like I'll take cancer for today, please hook me up to chemo. I do not want him to have it today. And yet this book of being able to track what's going on, even in our book, we talk about writing down gratitudes or milestones, right?

44:59Today, he ate his first burrito bowl, right? After the milkshakes were gone, we have a place where you can write down little wins to remember, oh yeah, we have come a long way.

45:08Ann Kelley: What a great way to remember it. Yeah. To like what you were saying earlier, it's like, okay, I can think about all the things that are going wrong, but I got to eat a burrito today and just feel that sense of awe and joy in that one moment is what I'm hearing y 'all say is, has been really essential to getting through to where you are right now. Definitely. It gives you agency and autonomy, being able to write things down and track. We didn't want to just give, you know, strategies for resilience and joy, but we also wanted to give really practical tools and questions for your care team. That way you can feel empowered when you are on the sidelines as the caregiver, you can be organized and be doing something productive when you can't be taking on the treatment yourself?

45:50Ann Kelley: Let me ask a really hard question. You all shared that at one point you had single-dish-it's likelihood of survival. And I can't imagine how devastating that was to hear and what you were holding with that. And one of the hard things that we go through when there is a terminal diagnosis or could be terminal or high risk of that, is how do you talk about that? How do you talk about your own fear of it for you, Thomas, what that was like to hear that, what it's like for you, Lindsay, to go through that? So many people are scared to talk about it and like, oh, if I mention it, I'm going to create anxiety for the other person, but it seeped into your experience.

46:39Ann Kelley: So what advice would either of you or both of you have for anyone out there going through that kind of seriousness about how one talks about it? What is off limits? What do you wish people would know about that? It's a very difficult thing to get bad news. And I got it on Christmas, as I mentioned, it was late at night and Thomas had just fallen asleep. And so I checked my phone and I saw leukemia right there, really big font on my phone. And I wanted him to sleep. I knew that the next day it would be a really hard day. We'd probably be back in the hospital. So we were staying at the Ronald McDonald house at that time.

47:19So I walked down to the little laundry room and I just sat on the ground and I was crying. And I went through my phone and I started seeing, it's hard to call someone on Christmas at 11 o 'clock at night. You don't want to ruin someone's day. And a lot of people have their phones turned on silent, but I was able to reach out to a friend who had her phone on and I was able to cry with her and tell her how hard it was. So I think find someone you can talk to and really be able to say, Hey, I have something vulnerable. I have some fears. I would love to share this with you. When's a good time? Because if you're catching someone when they're in the middle of a hard thing or they're distracted, if they know, okay, she has something vulnerable to say, even with Thomas and I, if we say, can I share something vulnerable in my heart, then we want to say now's a good time or let's do it later.

48:03But I think being able to have those hard conversations and not shine away from it, everyone's thinking about it.

48:10Ann Kelley: What about having the hard conversation with Thomas? And Thomas, you having the hard conversation, I'm thinking about losing you, I'm fearful. What are your thoughts about that? Having the conversation together when you're having the fear of that. We both feel safe with each other. we know that feeling something and then trying to run away from it's like trying to keep a beach ball underwater it wants to come up the emotion's going to come up either way but like let's be more intentional and just acknowledge it and feel it you know the only way out is through and so there's been a few times where we've had it at the same time but more often than not it's one person's having a hard time with looking at the odds of survival and everything and allows the other person to be there as support, whether that's just sitting there and listening or talking about it.

49:09I think us just knowing that between us two, we would much rather talk about it and address it and pinpoint it and have it out in the open because if there's a knot that needs untangling, you know, it's not going to get untangled in the dark, so to speak. You know, so bringing everything out to light and just being transparent with each other has been huge. She's cried on my shoulders plenty of times. I've cried on her shoulders plenty of times when I'm like, I'm so sorry. You know, there's times where I felt guilt and a whole range of emotions about if the stupid cancer thing wasn't there, we'd have to have kids.

49:52And, you know, So I think we are comfortable sharing that with each other. And I have some family members that I'm able to open up to as well, friends and family. But I think learning that vulnerability is well worth it. It's huge to be able to do the uncomfortable thing and be seen and maybe not even if understood completely, at least seen and acknowledged. And that is huge, I think, for your psyche, for morale.

50:27Ann Kelley: What would you share? What would you, other family members, maybe not as close, right? Y 'all have a very tight partnership so that the high communication is so important. what about the family members that aren't as close to you but are having that thought in their own mind of losing you or wondering if you're afraid or whether you're thinking about death what would you say to them is it something that you wish they would talk to you about are you glad they hold it in and because if they bring those thoughts up it's going to make you feel worse? What would you say to those people? Personally, I'd let them know I'm here for you 100%.

51:13You can share anything. There's not going to be any judgment. I'm here either to listen or to process whatever you need, but feel free to share anything and everything with me. Just share with me to the level that you feel you can trust me. Of course, I'm not going to try to force you to tell me your deepest, darkest secrets or thoughts or whatever. But I would let my family member that I'm not as close with know just, I would encourage them to share whatever it is that they are thinking, any fears they are having. Because I think repressing those and keeping those in is just not healthy. I think it doesn't do anybody any good if it's just, like I said, like a beach ball you're trying to keep underwater.

52:00or it takes all this strength to try to ignore these feelings or thoughts, these thought processes. So sharing open with each other. I feel very blessed to have a family where everyone is pretty good at communicating.

52:16Ann Kelley: So you would rather them share. You would rather them, instead of holding it in out of fear of how it's going to impact you, you would rather them go ahead and say what it is that's happening. 100%. be real with you rather than to approach you on tiptoes. Like that's what I'm hearing. You want a real relationship. You don't want tiptoes. Correct. Yeah. I would also say it would be important if you're a loved one, you're witnessing this happening. It can be really difficult from the sidelines because you feel like I don't have any agency to support this person, right? Especially if you're not super close, but saying, Hey, what does support look like?

52:56How can I support you? what, I mean, we had people from his work who would send us crumble cookie. They would be like door dash to the hospital and blessing us in these different ways, feeding us. Of course, this is when he could eat and people were showing their love in different ways. But also I did let people know I had separate text message groups that Thomas was not a part of. Right. And so I would say, Hey, here's an update. If you have any questions, let me know. Because when he was in the midst of really difficult treatment, I was someone who could shield and who could answer those types of things.

53:27Ann Kelley: So you would take it on yourself to say, come to me, don't come to him. And that, yes, definitely for different periods of time that felt most appropriate. And then that's kind of why we started our podcast. We had so many people who were, you know, hearing about our journey and wanting to know more. So, you know, by the time October came around and we were having a bone marrow transplant, we just said, let's turn some microphones on and talk about our experience and share. We have an episode called The Medical Math of where he was at and just how daunting that was. And for us, we're pretty open about all of this because our faith is so important to us, and that's really what grounds us and sustains us.

54:05We believe that we'll see Julie again. She's not here with us on the earth, but we feel so connected to her, and we have so many people who are praying for us. I think one way that's been personal and resonated with us is people have said, how can I pray for you? And in our values, that's something we take a lot of comfort in. And so I think when people frame as, hey, I'd love to know whatever you feel comfortable sharing with me, I would love an update. And then when you give people space, honor that, hey, share with me what you feel comfortable sharing with whatever depth, honoring that I think is a great caveat, right?

54:39Of like, hey, I understand you're going through some really hard things. You got really bad news. I would love to know whatever you feel comfortable sharing with me. And that gives us permission to be as transparent as we can be in that season. So I think that might be a way that people can approach it that's going to be responsive for those in treatment.

54:56Ann Kelley: And you two started this podcast while in a hospital room. Is that right? Yep. That is just like a way to channel your energy. It was so fun. We had the Positive Choices podcast, and that was what I made for teachers and for parents. And that's when I came onto your show in 2021. I was really into that. And so we already had all the equipment and we thought, Hey, we're going to be in the hospital for 30 days straight. Let's bring our microphones. And if we feel up to it, let's start a podcast. And our nurses were so supportive. They made a sign that said podcast recording in session, and they would hang on our hospital room door, you know, please check with nurse.

55:34So it was so fun. We had Thomas's IV pole that every once in a while, it would start beeping at, you know, not a good time while we're mid sentence. And we said that was our producer, Ivan, the Ivy Pole. And it's time for a commercial break. So we just had fun with it. I think that's another thing is allowing yourself to have humor. At least that's something that Thomas and I do. I know in I think some of the Gottman's work, they talk about couples who were in conflict, those who are able to connect with one another through humor, cutting through the hardness and cutting through that difficulty, being light about things, adding some levity and some humor can really help, at least for us, that's resonated.

56:11We dressed up as Dunder Mifflin warehouse workers for those people who like the office on Halloween. So we had some Amazon packages with those costumes and we dressed up and we walked around the hall in the hospital with good old Ivan rolling alongside us and we made people laugh. So that's just kind of how we operate. We love to be goofy and we found that that levity can really help in hard times too.

56:33Ann Kelley: You mentioned in your book that you would even arrange date nights in the hospital. So I guess we're going to have to start wrapping, but I really love the way you try to bring in real life instead of this holding capacity until it's over. It's like, how do we make the hospital as much as we can our home? And you have some really great suggestions about that, about how to turn the hospital into something that has more warmth and the date nights and still focusing on the relationship you have that is beyond the medical needs, beyond what's going on. You still have a deep relationship together that needs nurturance and care.

57:14Ann Kelley: And we don't want to forget that. Definitely. Do you want to talk about sleeping in the hospital bed, Thomas, together? Oh, sure. Yeah. I think you were telling me earlier today, it had been a while since we actually had touched each other while living in the hospital. And you handed me a glass of water and our hands touched. And we were both like, oh, that's nice. I remember that. Physical touch is one of our love languages. And we've been missing that so much. And so we asked if it was okay, if she could cuddle me in my hospital bed. So we started doing that. And so she would come over and have a sleepover with me where she'd be in my hospital bed.

57:57We'd spoon together or whatever. And a lot of times it would scare the daylights out of nurses that were expecting just one body to be in the bed when they come in at two in the morning to draw labs or whatever. It was pretty entertaining in that as well. But I think realizing where are ways we can connect and fill each other's buckets, so to speak, and understand our own ingoing and outgoing love languages so that we're able to grab onto those bits for connection and find ways to keep our relationships very goofy, mine and Lindsay's, and very light. And, you know, we talk about all the hard stuff, of course, but we have a lot of fun together.

58:43I feel like sometimes even staying in the hospital, we talked about like we had just as much fun today with each other as we did at Disneyland on our honeymoon. Just because we laughed so much today and we found things to be grateful for and ridiculous things to laugh at or stories that we'd make up or whatever. And so I think, is that what you're asking, Linz, about physical touch and such? Definitely. Yeah. One night when we were in the hospital bed, a night nurse, they're like night ninjas. They try to slide in and get your arm out, take the blood and go. Vampires, I don't know what the best image is, but they grabbed my arm instead of his.

59:22And they were like expecting some, you know, man's arm and, oh, there's two people. It was pretty funny. But just realizing you can integrate physical touch. We are a partnership. You know, we love each other and we can touch and have date night. We bought a little card table from Ikea. We brought into our hospital room. We got fake plants and a little tablecloth. And so every night, rather than him eating at the hospital table that slides over your bed, we would sit down at our little card table and I would set the placemats. You know, and it was something where we just tried to have some normalcy.

59:55It's also fun to keep, you know, medical talk. Maybe at four o 'clock, we're going to start talking about all of our medical things. but from two o 'clock to four o 'clock, this little two hour chunk, we're just gonna talk about life and our hopes and dreams and pretend not that you're denying these things are there, but like, let's just be a husband and wife and let's connect and just kind of separate that a little bit. So I think that is something that can be really helpful. And then for us, not only connecting physically, but then also spiritually praying for one another. And I think that's one of the ways we are able to be vulnerable and bring up the hard conversations.

1:00:29Like, I don't know what, I'm going to do if I lose you. I mean, that's a hard thing to bring up. And at first I didn't want to say it. And then when I finally said it, it was so empowering and good to be able to be vulnerable in that way. And then Thomas, as we're goofy, he's like, well, I'm just going to haunt you. I'm not going to follow you around. And I'm like, I'm going to move to Disneyland and I'll just live there. So we make light of it, but then we also hold space to talk about the hard things. One more thing that comes to mind for me is foreboding joy. And so grief can hit you, A little grief burst can happen.

1:01:01And we were making the bed a little while ago and I was putting the pillows. He was passing me these decorative pillows and it's like we have 10 pillows and he thinks we need two. So I was kind of laughing about that. But then I started crying and he said, what's going on? I said, I just have so much joy and I'm appreciating this, but it's foreboding because that would be so hard if you were not here making this bed with me. And so I think what we do is one of us will say foreboding joy, right? Like we're having this beautiful moment and then we have some fear kind of kick in. And then we just say gratitude and we hold hands and we ground each other.

1:01:32But we do hold space for that. And we just understand life is uncertain. All of us, right? I mean, all of us are not going to be on this earth at some point. Just realizing how important it is to love every day like it's your last day can be a beautiful thing.

1:01:47Ann Kelley: Well, that is a perfect note to end on because I think it gives such inspiration and such reality all in the same moment. I really appreciate all that y 'all have come to share and I know you're still in the midst of it in the thick of it I know thomas today was not the best physical day for you and yet you showed up in this really beautiful present day So I feel very grateful to you In this moment and to both of y 'all for coming on the podcast And sharing such important experiences that you have with our audience Thank you for having us. It was a beautiful thing. It's our pleasure And I'll just remind everybody about your podcast.

1:02:27Ann Kelley: That's Brain It On. And they can find it at any podcast player. I've checked it out. It has such rich information for anyone out there going through and want to dive deeper and know more. And of course, in our show notes, we will also have a connection to this book that you have that is an incredible resource for anyone out there dealing with somebody with any kind of chronic illness or acute illness. So I really highly recommend that. And again, that will be in our show notes. Thanks so much for joining. Please take the time to rate, review, and to send this on to anyone else in your life that you know could gain such amazing insight from these two wonderful people.

1:03:06Ann Kelley: Thank you so much for joining us, and we'll see you around the bin.

1:03:16Ann Kelley: Therapist Uncensored is hosted by Ann Kelly and Sue Marriott. This podcast is edited by Jack Anderson.