Sue Ryan 4/8/25

(This interview has been edited and condensed for length)

Zack: Please share with us your amazing caregiver journey as a spouse caregiver.

Sue: …  I had a variety of caregiving journeys throughout the years. I met my husband when I was 46, and I had already begun caregiving for my grandmother who had a a diagnosis of Alzheimer's disease and many other people before that. After my husband and I got married, Jack is his name, we got married when I was 48. And a few years into our marriage, my dad was diagnosed with dementia.

So we had my dad's care for about eight and a half years, and overlapping that by a couple years was my husband's diagnosis. He was diagnosed originally with dementia with Lewy bodies, then frontotemporal dementia, and then Alzheimer's disease. So, I was navigating both my dad and my husband for a good long time… I was caring for both of them and caring for my dad toward the end of his life along with my stepmother as Jack was stepping more deeply into his diagnosis. So it was pretty full-time.  And I was also with my stepmother helping her.

Zack:  How the heck did you do that?

Sue:  Well, I practice something that I learned in a caregiving experience with my dad when I had been caring for him one evening, and I felt like I was letting him down because even though he had dementia and I knew that he didn't have access to things, it was hard for me not to try to get him to do something. Because all my life he'd been teaching me how to be safe and teaching me how to think… I was trying to get him to do something instead of going, “He doesn't have any access to that.” And in debriefing myself after it, I came to the conclusion of massive acceptance and radical presence.

And I learned in my caregiving and I've adopted it. And the rest of the caregiving I had for my husband as well as now in my life is that I accept things now exactly as they are. I don't have to like them. I don't have to agree with them. I don't have to understand them. I just accept them. I accept them without judgment of myself, of the situation, or anyone else. And when I do that, I can stay fully present in the moment, which is all we really have… So for those challenging decisions, it makes it much easier. And I also can see beauty in even the tiniest moment.

… In addition I was being supportive of my stepmother, and this was something that was very challenging for her… She wasn't able to step into it, in the acceptance of it, in the same way I was. And so I was working with her as well as caring for my dad and my husband.

Selma:  What do you think was the most challenging about taking care of two people at the same time?

Sue:  They both required a lot of care, and they both required care that was multilayered. It wasn't something where you could just say, let's do this. So for example, we moved my dad finally into a continuing care community because he had frontotemporal dementia with aphasia. And his frustration at not being able to communicate didn't ever diminish in the disease… So while he's going through that and we're moving him into a community, as you know with any diagnosis, there's a decline and then there's a plateau and then there's a decline. So I was able to have Jack with me when we were caring for my dad, except during this one period of time with my dad, my husband also took a really significant decline. And so I was needing to be fully present with him and fully present with my dad and supporting my mother-in-law all at the same time. And that was really challenging because it was three different kinds of care. And the most important thing for me to do was to stay fully present and very calm.

Selma: The literature says that spousal caregiving is very different than caring for other family members because there is a different level of expectation. As a result, it’s said that spousal caregivers are least likely to accept or seek help. Did you find that to be the case in your experience?

Sue:  For me, that's not the case. And what I will say is, I've observed it in many people and that's part of why I do what I do now is because it doesn't need to be that way. So for me, in my early journeys before I was married, my biggest challenge was I could never self identify in the workforce that I was a family caregiver… When I was married… we shared with everyone… And I reached out to get help as well as to invite everyone else in because there were so many other people who were part of the journey.

It allowed my husband to be able to have more freedom. It allowed other people to choose how they were going to lean in and support us. It allowed him to be able to be as engaged as he could possibly be because he was around other people who knew him and could meet him where he was. And it also gave me the opportunity to recognize I could reach out for help. And people would reach out to me because they knew what I was going through. So I personally didn't experience that because I chose not to… This was not going to be our experience. And I think to your point, there are expectations some people have put on themselves for that, and they have to just get over it. 

Zack:  Earlier today we had another interview guest say to us that being a caregiver to a spouse  is very difficult and different from being a caregiver for other family members. You've done both. What is your response to that?

Sue:  I would say that there was another level of challenge with my husband, partly because he's my husband and I love him. And even with a family member like with my dad and with my grandmother and other people, you know you're responsible for them. Where I felt that there was more challenge in what I was doing is I'm looking at it financially. This is a long journey. We don't know how long it's going to be. Sometimes with… another family member there are other finances that are involved. There's less of that expectation when it's your spouse… You want to provide absolutely as much as you possibly can… So, I would say there's a higher level of expectation that we put on ourselves as well as that others put on it. And I don't mind that as long as it's done in a healthy way.

Zack:  You left the workforce.  How did you come to that decision, and how did you manage that?

Sue:  When I looked at the care for my husband and I chose and, again, I do everything from being in a position of choice… I chose to prioritize his care over being able to stay employed. I knew that I would potentially be letting down my coworkers if I were not able to be fully present in my work and fully present at home and the demands of what I would be expected to do. And I didn't choose to put my coworkers in that position. I chose to prioritize being always able to be fully present with my husband throughout his care…  And I chose to move forward in that, and so I had complete peace about it.

Zack: What is the most challenging caregiving story you want to share with us?

Sue: My most challenging caregiving story was in 2017. We live in Naples, Florida. Hurricane Irma was going to come up our street, which she did. And on the Monday before the hurricane was coming, I recognized that I couldn't keep Jack safe. I couldn't necessarily be able to get out for gas, I couldn't keep him in an environment where he would be around other people. If we lost power, I didn't know what it would be like. And so I recognized that as difficult as that would be, because he had been diagnosed for a number of years already, and I had been so diligent in keeping him in a routine, I knew this was going to be not a good experience.

However, I felt it was the wisest choice. So I, we have family in Atlanta. I called them. I made a reservation halfway between Naples, Florida and Atlanta. Took him out to a men's meeting and dropped him off at church. We had a care buddy. I called Dan the care buddy and said, please come feed Jack breakfast while I packed up, and we got on the road. And it was more brutal than anything I could ever have considered…. he kept trying to get out of the car while we're driving up the highway. We get to the hotel. He doesn't know anything. When he was tired, he didn't even recognize me. I slept on the floor in front of the door leaving the hotel room so that if I fell asleep and he got up, he couldn't get out and I had locked the door.

We got to Atlanta, we got to our family. He didn't recognize the family. The only place I could get him to have any peace at all was at church because he was a man of deep faith. So, I got him into church, like, four times a day…. I was there with him, present twenty-four seven to support him through that part of his journey.

Selma:  You have such a long history of caregiving for so many different people. Can you talk about what gives you joy in doing this work?

Sue:  Sure. I feel like because I've been on so many journeys, I feel like this is part of the purpose of why I was actually brought here, was to be able to do that. My life's motto is helping people become their greatest, leading themselves and others…. And when I look at it from the lens of being a caregiver, it's that dementia impacts their head, but it doesn't touch their heart…. There was an example when we were in the memory care community with my husband and a musician came in, and he was fabulous. And one of the other residents who had very little connection with any movement at all anywhere in her body, I glanced over, and her foot was barely moving, almost imperceptibly, but it was moving. And I shared with all the other caregivers in there, and I said, “Look at that.”  And we were as thrilled as if she had gotten up and danced because something had touched her heart to the point where she was able to make a movement. And so when you think about what those things are, you know, the diagnosis took away my husband's ability to recognize me in [his] head, but he recognized me from his heart….

Zack:  To be helpful for our listeners who are working caregiver spouses, is there anything you would do a little differently?  What would you advise Sue back then to prepare for this journey?

Sue:   I've been on 11 caregiving journeys. So for a lot of these, the majority of them were while I was still working. And what I did not know in the very beginning was how to manage my time and how to manage my community. And what I learned after I had several caregiving journeys is that we are not on this journey alone. I  embraced reaching out to all different people who could be a part of the community of care and where they could provide care, where they could provide support, what they could do. And, again, I didn't self-identify at work…. So, from a personal perspective, I made a notebook of what the diagnosis was and…  I reached out to people, you know, if you've got five minutes this would be something helpful. I got a community of people together who could support different things. 

And then if I had an emergency, I had a list of different people. You know, I need somebody for an hour, for a couple hours, a half a day, a day, overnight, a few days. I think one of the best things that anyone can do is to recognize you are not alone. You don't need to be alone. So, here are the points:  You're not alone, number one. Support is all around you. It's reasonable you don't know the answers. Don't judge yourself. Don't compare yourself to other caregivers. It's okay not to be okay. It's not okay not to do anything about it.

Zack:  Tell us a little bit about what you do now.

Sue:  A part of me, a big part of me that I'm passionate about is I'm a leadership coach. So I work with leaders who are emerging in an area… and I work that on the business side of what I do professionally. And my business partner, Nancy Treaster, and I who also many years ago worked together as did her husband, she and I have created a podcast called The Caregiver's Journey, and she is the co-founder with me of The Caregiver's Journey. And what we've done is we're bringing solutions and support to dementia family caregivers.

Our podcast is based on practical tips and candid conversations. So when we do a podcast episode, for example, we just did one with elder law attorneys. This is something that many people don't know about, they don't know to think about and it's hugely valuable. And we have two top elder law attorneys, and they provide a variety of different tips. So we bring that whether it's incontinence, or making the home safe, or elder law attorneys, or talking with hospice nurses. We bring practical tips and candid conversations, and we're expanding that to workshops and other things that we can do. We also created a nonprofit called The Caregiver's Journey because it's our passion to make sure that we're providing resources that caregivers can actually afford because it is a very expensive journey.

So, the third leg of my three legged stool is that because for nearly forty years, I was in roles of caregiving, and I was a business professional, and I didn't self-identify,  I'm passionate about helping raise the awareness to businesses so they can very quickly… adopt the support of family caregivers and reduce those tremendous costs that they don't even know are in their business and retain their valuable talent. So that's one of the other things that I do is I'm a passionate communicator and speaker to businesses on that.

Zack:  Final question for you, Sue, how can people find you and why would somebody want to utilize your services?

Sue: You can find me at sueryan.solutions on the leadership coaching side. And you would want to work with me if you want to become your greatest leading yourself and others because I know how to do that.

Caregiving side it's The Caregiver's Journey and you would find me to come in and speak to your organization or business. You would come to us as a caregiver to listen to our podcast episodes and to get workbooks and guides that will support you on your caregiving journey. And I also am a caregiving coach to individuals who are navigating the journey.

Zack & Selma:  Thank you Sue!