Rayna Neises: [00:00:00] Welcome. This is Rayna Neises is your host of a season of caring podcast where we share stories of hope with family caregivers, breaking through the busyness and loneliness of caregiving to see God even in this season of life.

I’m excited to introduce you today to Sue Ryan. Sue empowers family caregivers and business leaders to navigate life’s transitions with confidence and purpose. As an international best selling author award winning course creator and certified caregiver advocate, she draws from 40 years of personal caregiving experience three decades in enterprise software leadership to provide practical empathetic guidance.

Her book, Our Journey of Love: Five Steps to Navigate Your Caregiving Journey, an award winning course, The Caregiver’s Journey, has helped countless families find balance and support. As co host of The Caregiver’s Journey: Practical Tips and Candid Conversation Podcast, she continues to share valuable insights and [00:01:00] strategies. A TEDx and SH RM speaker, Sue serves as the Advocacy Board of Southern New Hampshire University and volunteers with organizations including the Alzheimer’s Association and Alz Authors. Her mission is to transform the caregiving experience so both businesses and caregivers thrive. Welcome, Sue. I’m so glad to have you here today.

Sue Ryan: Thank you, Rayna. I am so grateful for the opportunity to be here on your podcast. I have listened to it, and I love what you’re doing, and I respect the fact that you’ve brought your wonderful messages more than 200 times to people of hope. Thank you very much for what you’re doing.

Rayna Neises: Well, thank you. So tell us a little bit about what your caregiving journeys looked like and who you’ve cared for and all the fun stuff.

Sue Ryan: All of that fun stuff.

Sue Ryan: My first caregiving journey began when I was in my 20s. I was a business professional, and the first journey came to me at a time when there wasn’t information about it. There weren’t people who talked about it. We couldn’t find [00:02:00] support groups or anything. And so it was really a challenging experience.

It was also not something we shared professionally in the workplace. Because as it, unfortunately still is there was the stigma that, well, if you’ve got a caregiving responsibility, you can’t be a professional. And so both the, the professional side of it was tremendously challenging maintaining my professionalism at work and then my workload, as well as I say, it was like being on an emotional rollercoaster, often blindfolded because we didn’t know what we didn’t know.

And we would try something and it would work. And then the next day it wouldn’t work. And so my journey began that way. It was really challenging and really difficult. And, I have now come to feel a great peace in my life that God said, okay, well, that’s the first one. However, that was just the foundation.

And I’m going to prepare you because many, many, many journeys since then have come. Three of those have included my grandmother, my dad and overlapping my dad by several years is my husband. And we recently celebrated my husband’s [00:03:00] first birthday back into heaven. And so the lessons from the first one that created the foundation have continued to build. And until the end of my husband’s, I stayed as a business professional in parallel with my journeys.

Rayna Neises: Yeah, it is definitely so difficult to juggle. And I know I was only 16 when my mom was diagnosed with Alzheimer’s. So that first journey started so early in my life. There was no one else talking about their parents, living with a disease like that, much less little information out there definitely can be so challenging, but I do see where God’s hand has just been with me throughout each opportunity.

And the way that I’ve seen them as opportunities to learn and to grow and understand Him better is. Even as I’m learning how to be a better caregiver. And so I guess that’s what life is all about. But I think caregiving seasons are just that perfect Petri dish to help us really become better people and to be more the hands and feet of Jesus.

Sue Ryan: Well, and I feel like I was [00:04:00] very fortunate because I have. observed where people feel God has left them in their caregiving journeys. They’re like, why me? Why would God let this happen to me? Why did this have to happen? And even in my very first journey, when the journey itself was brutal, I always felt the hand of God.

I always felt that this was a journey God had planned for me. Part of the reason he had brought me on to this earth because he had planned my every breath. He had planned my journey all these things and so I’ve always felt that this was something that he said this has been chosen For you and so I stayed in it from that lens of okay What he has brought me in to do he will prepare me for I may not take every step In the way, he would have chosen it for me.

And that’s why we have free will And so on all of these journeys, I’ve continued to see the hand of God in them to both help me support my loved one and [00:05:00] also to help me know that I’ll be okay, I’ll get through this and it will help me to continue to grow into my purpose. Why he brought me here and how to express it.

Rayna Neises: Yeah, definitely. it’s not easy to always see him in the middle of it, but it definitely makes such a difference. And like you said there, the people that I find that are caregiving that are resentful and are not, you know, seeing him in that, I can’t imagine being able to make this journey without God. I always say that. So I’m so thankful

Sue Ryan: It’s hard can you imagine if you were constantly, for me, I mean, I observe them and I, and everybody gets to do their own thing when I see the amount of additional strain they put on themselves with anger and frustration and why me, and this isn’t fair and all of that. I’ve got enough energy to expend on the positive side from a place of love and support and care to do all the things.

So, I’m fortunate and I re and this is what I observe. I can’t control anyone else. However, I [00:06:00] everything is either a mirror or a window. So, I observe them and I say, Is there any place in my life where I am living from that judgment, where I’m living from that so I can let go? It’s kind of the, you know, they say in 12 step programs, let go and let God, am I always letting go and letting God, even in the times I do not understand, I don’t need to understand, just need to accept this is what is. And it’s easier to know I can accept it. When I know I’ll never be alone.

Rayna Neises: for sure. Yeah, definitely. So share with us a favorite caregiving story.

Sue Ryan: Oh, my gracious glory. There are, there are so very many of them. One of my favorite caregiving stories happened with my dad, my dad, my hero. If you took the tallest ladder and you climbed to the very top and you said, who’s the most amazing person in your life, if I tippy toed on the top, My dad’s name would be way, way, way high up [00:07:00] on the list. And all my life, he was teaching me lessons about what to do and how to be safe. And, and one time as the diagnosis was advancing, he had lost the connection with who I was. Which was fine. I was, I was a person and I was energy he was comfortable with, but he had no idea who I was when my dad understood where he was, he was always the person of great compassion, great empathy. And he wanted everybody else to feel comfortable, even when it was at his own expense. He would put things down. Well, when those filters started going, my dad was who my dad really wanted to be. I mean, he didn’t have to try to please anybody or make sure everybody else was happy. So he and I were taking a walk and we had the dog and we were out walking around. He and my stepmother lived, uh, man, around a man made lake and we were out and it was a beautiful day. And I said, daddy, [00:08:00] why don’t we go over here and sit down and just watch the dogs? And he said, because I don’t want to. It’s like, what was this? So then I started testing him like well, this is really pretty humorous. So for the whole rest of the afternoon, I’d say, Hey daddy, why don’t we do this? Because I don’t want to. And he was, it was, it was so fun to see my dad. Now this sounds like a silly thing, but it was fun to see my dad stepping into where we were, where we normally would feel sad because they’ve lost things.

And yes, there is the loss of those things, but what he had revealed is who he’d like, I don’t want to do that. I don’t have to do that. And it was, so it was, it was kind of more of a playful, fun thing. And so when we think of stories, That’s one of the ones that resonates with my heart because I know that my dad had the capacity to take that beautiful heart of his and instead of always applying it to others, to be able to apply it to what brought him joy as well.

Rayna Neises: Yeah, it is fun and it’s a matter of being able to grow with them in the moment and allow them to be who they are [00:09:00] today and not be holding on to what has always been to be able to have fun in those moments. But that’s cute. I, I can totally see that because they do kind of get to that point where it’s almost like, A child in that, you know, well, I don’t want to do that, you know, and so it’s

Sue Ryan: And it’s like he was having fun

and then, and the, and the other part of it, and I think what kind of helped make it more fun is nobody was saying, well, no, you can’t.

Rayna Neises: right. You have to.

Sue Ryan: He would say, I don’t want to do that, and I’d be like, okay,

Rayna Neises: sure. Okay. Let’s,

Sue Ryan: fine, and then we’d find something to do, and so I just kept trying different things, no, I don’t want to do that, and of course now, his favorite thing in the world is ice cream, a favorite, even over me, I think, was ice cream, so we did get to a place where I said, hey daddy, would you like some ice cream, yeah, so we went and had ice cream, and he thoroughly enjoyed it, yes, ice

Rayna Neises: that was one of our favorite things too. That’s often one of my tricks that I tell people about sundowners is ice cream can solve a lot of [00:10:00] things. And so when we found that discontinent home, it would be like, Hey, let’s go for a ride. Let’s get some ice cream. And it just seemed like going away and coming back was very, very helpful for my dad.

But yes, ice cream solves a lot of things. And I personally.

Sue Ryan: yes,

Rayna Neises: I inherited that gene from my dad too.

Sue Ryan: That’s a good, well, yeah, it did not skip a generation in our gene pool. Cause that’s kind of right, right in the top of my list as well. So, but I also now usually what, you know, connect it with a wonderful memory of my dad. And so it’s something that there’s, there’s always a piece of love within that. So, you know, that’s not a bad thing either, but yes, for you also with the ice cream, if you get purely to the caregiving side of it, When we’re struggling with a care, with one of our care receivers, when we change their physicality and we change what they’re able to focus on to something that we know they like to focus on, that’s something that can often bring them out of that kind of despair where they’re getting into, or when they [00:11:00] start spiraling, is that we have something that can invite them in to taking a pause in that moment. And being able to go down a different path in a way where we’re not controlling it. They’re at choice and they’re moving toward it.

So ice cream has very medicinal.

Rayna Neises: I agree. So share with us what would be one thing that surprised you most about the caregiving role?

Sue Ryan: I think one of the things that and then you ask such great questions. One of the things that revealed itself to me through all of the journeys I was on is the incredible gift. I was chosen person of faith. I was chosen to be honored with the care of someone multiple, multiple, multiple times who was no longer able to care for themselves that not because [00:12:00] I was asked to do it by someone else, but because that whatever situation had put me into that place at that time in my life. I was chosen to be honored to care for someone that, that, that I was seen as someone who would be able to love them through this part of their journey. And that for me has been something really incredible. I see it as a divine connection. It’s also connected me to my purpose. It helped me reveal it. When I, Look at my professional career.

I’m a passionate communicator. I connect people with solutions. You know, I had business roles that were formalized like sales and things like that that did that. However, all of those combined with my caregiving experiences I now know that for me, I am living the purpose I was brought here for. And each of those experiences opened my heart up in a different place, [00:13:00] opened my mind up to different kinds of experiences that I can call on and kept drawing me closer into knowing I was surrounded always by the love of God.

Rayna Neises: Yeah, it’s so beautiful how He equips us in all different ways from relationships to seasons of caring, whether they looked a little different with a new season but we, we had all of these opportunities to grow and to learn and become this, who we are today and how we serve others.

And that’s one of the things that’s been such a blessing after my dad’s passing was for me to really, Stop. It was funny because while I was caring for him, I had people say to me, you should coach caregivers. You should coach. I’m like, no, absolutely not. And once he was gone, it was like, the Lord was like, yeah, that’s, that’s really what I have planned for you.

And I was like,

Sue Ryan: Well, I’ve got the intersection and I talk about that on the pure leadership side, and yet I, for me, it developed an even more impactful meaning, I talk about the world [00:14:00] is filled with an almost infinite amount of data, basically an infinite amount of data and through experiences, our lives, we become curious in an area.

And so we start asking questions and we gather information. And then we start using it and we develop knowledge. We get smarter, all of our experiences, all the things we’re studying. So we become knowledgeable and yet it’s not wisdom until we give it away. And so from my lens, it wasn’t random. It may have seemed random in the beginning that I was brought into these caregiving roles and that I was. Through situations got navigated into the professional roles I had. And yet through those, I was gathering information. I was becoming curious. I was developing knowledge. I was getting better at it. And now the gift in my life is I don’t feel like I am doing anything. I feel like things come through me that the messages I’m the vessel for the messages to come through me that are based on everything that has happened to [00:15:00] prepare me to be in the position to share those in support of others.

Rayna Neises: and I think it’s so important while we’re in the middle of the caregiving season to just stay really curious and to really. Continue to examine and explore and to look for options that fit you and not to feel pressure to do it all perfectly or do it all right, because there really isn’t a perfect or a right way to do it.

And so that curiosity is such an important thing to hold on to as a caregiver, and it can be tiring to stay in that state of mind, but realizing that that’s really going to give us a big impact.

Sue Ryan: it is. I just share this with everybody. I am unquenchably curious. I have been since I was a child. My parents talked about the fact that I would ask questions continuously that has never left. I’m unquenchably curious about what else is possible. And so I see every experience as an opportunity to learn something. And yeah, you talk about perfectly imperfect. I mean, our caregiving [00:16:00] journeys are perfectly imperfect. In the very beginning, in the very first journey I was on, there was a lot of judgment of, because we didn’t know what we didn’t know. We couldn’t find the answers. So I continuously felt like I was letting my care receiver down and, you know, and everybody down.

And, and I, and that’s reasonable. And yet now I want everyone else to know that doesn’t support us. It’s a perfectly imperfect journey. And it’s not really meant like what’s perfect, like who’s perfect and what’s perfect. And, what I want people to have in their, in their lives is when the outcome is not what we anticipated.

So many people think of that as a failure and they feel like I’m letting someone down. It’s, it’s actually when the outcome is not what we anticipated. Okay. What did you learn? We’ve learned something. And if everything is going well, you’re not as curious. Because there’s nothing pushing you to go, huh?

Rayna Neises: Very true. Very true. [00:17:00] And I think that’s part of my message and not having regrets. It’s not about being perfect. It’s about continuing to try until you know you’ve done the best you can until you found that solution that works in that situation. And the next time you’re looking for the next solution, right?

So it’s always being able to just continue to embrace something new and try something different. And that is, It can be learned. You mentioned it’s kind of always who you are, that curiosity, but I think it can be learned because everybody needs to find that curiosity again. As children, it’s there. As I hang out with my grandkids, there’s always that curiosity and the, the questions they ask are so much fun.

And if we can challenge ourselves to get back to that place and not worry about right and wrong, just worry about learning, worry about discovery. Discovering that totally changes how our day goes and how we can support other people.

Sue Ryan: You said, you said it very well. Get back to that.

What I’ve learned for me in my [00:18:00] life, I was very, very curious in the beginning. And one of the things that I didn’t know in the time, we get reflective and we go back on things. When we’re very young, we are unquenchably curious because we’re building our container, we’re figuring out what things are. Then, we’re not being asked the questions as much as we’re being asked for answers.

Or, Our parents, people of authority were meant to answer through nothing, no negative reasoning, but they’re saying, now, okay, we’re going to go meet them. Now, don’t ask this, don’t embarrass, don’t ask, so we get confused about, well, should we ask questions or not?

And so we, we, step away from some of that curiosity because we’re not sure we have permission to use it. And we’ve got uncertainty around it. And when that gets damped down to your point, it’s now that we’re in this season of caregiving or whatever area of life we are, is reawaken that, give yourself permission to go back to that because [00:19:00] if we didn’t have curiosity, first of all, if we weren’t meant to be unconsciously curious, it wouldn’t have been part of how we were wired. Second of all, the reason we originally had it is it kept us alive.

Rayna Neises: Definitely.

Sue Ryan: Because we didn’t have, you know, we didn’t have the store you could go to. You had it like, okay, well, how am I going to do this? How am I going to do this? It’s, it’s meant for our survival. It’s meant for our thriving. So to your point, reawaken it and go back to it and, and do it not from a place of judgment, but a place of joy and curiosity. What else is possible? Yeah,

Rayna Neises: So, Sue, share with us, one time, I know many, but share with us one time when God really showed up for you in your caregiving.

Sue Ryan: I’m taking a deep breath toward the end of my husband’s journey in this life. I had gone to visit our family and everything seemed to be well. He was pretty far in [00:20:00] his diagnosis, but things were pretty good. So I went up for about a week. And during that time. There comes a point in time when, when, people who have diagnoses of different types of dementia, the signals that would tell their bodies to heal kind of quit talking together. And of course, at the time when I was away from home, that happened. And so when I came back, we saw obvious signs that his body said, nah, I’m not going to do that anymore. And God just sat with me and said, it’s okay. And I I called, we have, where I live, we have Avow hospice. I called hospice and they came in and so peacefully and I, and God was just there holding my hand, holding Jack. And we very peacefully said, now’s the time. And we moved to hospice and I was able to sit with him with God right there for five days. And I felt his spirit when [00:21:00] his spirit was done with his physical body partway through that journey, I felt his spirit go. And it was quite, quite a peaceful experience. And. And yet I had the opportunity to stay with his physical body until it was ready to be done. And in that whole time, I, I felt surrounded. I felt so peaceful. I didn’t mourn my husband’s loss. People say, Oh, I feel so sorry for your loss. I celebrated my husband’s birth back into heaven. A man of deep faith, who had been So loyal to God his whole life. He had questions. He wanted to ask God in Jesus He wanted to have an intellectual conversation with the Apostle Paul I knew in my life for for more than one second what pure love is And I felt that it was such a great blessing that God said, I am here with you. It’s time for me to bring Jack home. I have other things for him. [00:22:00] And it was an amazingly peaceful experience. I know God was sitting there with me.

Rayna Neises: Thank you for sharing that. I think it’s so hard for us to wrap our minds around. them moving on to that life because this is the only life we’ve ever known.

And so we clinched so hard to it because we don’t know what’s coming. We know who’s there. And when we know that we know God, but it’s still difficult for our minds to release and to let go.

So I, I love what comfort he brought and how he brought that piece to you. It can be difficult because not all passings are simple or easy in that way of just kind of seeing things shut down, but it is such a blessing because he’s there in the middle of all of it, no matter what that looks like for you and your family.

So thanks for sharing that.

Sue Ryan: Thank you. And what I felt is I felt so honored to have been entrusted [00:23:00] with the care of someone who, and this is for every one of us. I don’t, I’m not different. I just have this lens that was shared with me that was revealed to me is that each of us who are caring for someone else have been entrusted with the, the, the gift of that person’s life and caring for them.

And so. My goal was not to squeeze out the last breath of his life. It was to bring the most peace to him so that whatever, and I don’t need to know what is as after he’s done in this journey, but whatever it was meant to be, that he was at the most peace. I could be part of what made it most peaceful for him.

Rayna Neises: Yeah. You know, there was. Such a difference between my mom’s passing and my dad’s passing so I can really relate to just that peacefulness that was there with my dad and, and it was something that it was just this well done [00:24:00] feeling, you know, that, um, we’d walked him. I say it all the time. We walked him all the way home.

And just walked him right into Jesus’s arms, and so that was such a peaceful process. The grief is a whole different story. So because you, because we do have the grief, we do have to learn what life looks like with them, not a part of our daily life. And so sometimes it can be challenging.

Sue Ryan: Absolutely. I have a, do you have time for me to share one quick thing about grief?

Rayna Neises: Sure.

Sue Ryan: Okay. One of the things I learned for me is that every emotion has a purpose or we wouldn’t have it. And so grief has a purpose and people struggle. They feel like we should, or we shouldn’t, or they, they, they, they, they don’t define grief for themselves or they don’t, they’re like, I’m grieving and they’re so sad. And yet what I learned is the depth of my grief shows me the depth of my love. And that it is in the grief, in the clarity of what I love the most, that [00:25:00] as, because we’re not meant to stay in grief, we’re meant to move through grief and move on. And what I learned from grief is what I learned that I loved the most. And so now as I’m moving forward and living my life, I know with such clarity where I share my love.

Rayna Neises: that’s beautiful. It is such a challenging thing because it is so different for, for different people and, finding that way to move through and, and do that in your timing, I think is so important. I know for me, I was so surprised because with Alzheimer’s people often say it’s the long goodbye.

And, you know, there were so many things that weren’t the same in our relationship and weren’t the same for my dad that when he was gone, I didn’t quite expect it the hole to be so big in my life, but it definitely was and, and definitely can be, I think, surprised. It was surprising to me how, big the grief is.

But like you say, when you love big, the grief’s big.

Sue Ryan: The grief is big, and what we have that’s different, if your dad had been hit by a bus, [00:26:00] you’ve got that gut wrenching thing. We have what I call drip grief. Every day there’s a little bit of grief. Every single day there’s a little something, a little something, a little something. And we have more clarity on the pieces of it.

It doesn’t diminish the grief, it just shifts it a little bit. And yet, grief has so many lessons for us. where I wish more people had the opportunity is to not try to resist grief or feel negative about grief, but embrace it for the lessons it has for us because it’s meant for us to learn.

Rayna Neises: Yes, and it is a process. It’s the brain rewiring itself. It’s not just. But there’s physical things that are happening in the brain as well, which requires energy, requires a lot of processing to happen, to learn how to process life without this person

Sue Ryan: Yeah.

Rayna Neises: a part of it. And so I think a lot of times we don’t extend ourselves [00:27:00] enough grace in the middle of the grief because we aren’t understanding all the, all the pieces that are involved in it.

So thank you for sharing that experience. I think it’d be really helpful. As caregivers, we want to avoid thinking of walking them all the way home because our goal in the caregiving is to care for them here. It’s important that we have conversations to help people start to be more open to, we are walking them all the way home.

 We’re not going to fix everything. Everything’s not going to be what we, you know, if we could dream it and we could have our magic wands, it’s not going to be that. There’s going to be an end and it’s going to be hard.

Sue Ryan: And yet if we, if we stay open in the journey, Part of accepting it. And I talk about massive acceptance and radical presence where we accept things exactly the way they are and we don’t judge them. And then that way we can stay fully present in the moment. There were teeny, teeny, like you could barely see them teeny, tiny moments of just such amazing joy. And I [00:28:00] had so much peace when I made what my. You might think is the most challenging choice you could make. And yet I had that peace because of it. I think when we live from that, with that acceptance and that presence of it, then we can be in it and we can see that we’re not alone.

Rayna Neises: Definitely. Well, Sue, it’s been so great to talk with you. I would love for you to share with our audience more about where they can find more information about you, connect with you, and pick up your book.

Sue Ryan: Well, thank you very much. If you go out to the website, The Caregiver’s Journey, you’ll see that my business partner, Nancy Treister, I started a podcast called Practical Tips and Candid Conversations for Dementia Family Caregivers. So you can get tips and things that we’ve learned on our journeys. The book that I created, erode is out there and Nancy and I are writing a new series book based on The Caregiver’s Journey. And we’re updating our online course. So [00:29:00] we’ve got a variety of different materials there. And also if anybody has ever got any questions, just reach out. I’m ready. great.

Rayna Neises: Thank you again so much for being here today. It’s been an honor.

Sue Ryan: Thank you. It’s been an honor for me, Rayna. And again, thank you so much for what you’re doing. You’re, you’re such a beautiful voice of God in all of this for us. And thank you, because over and over and over again, you show us God in our journey. So thank you.

Rayna Neises: Thank you. Listeners, thank you for joining us today for Stories of Hope with Sue. Remember that a Season of Caring podcast has been created to share stories of hope for living content, loving well, and caring without regrets. If you have legal, financial, or medical questions, be sure to consult your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation