Deb Kelsey-Davis: 0:00

Even though I’m a nurse, I really believed going into caregiving it’d be a snap, but guess what? It’s not. I was not prepared for the level of organization required, in muddling, through chaotic situations, the emotional toll and the spiritual toll.

Rayna Neises (2): 0:16

That is Special Guest Deb, Kelsey Davis.

Rayna Neises: 0:19

Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises as your host Deb Kelsey Davis is co-founder of Sagacity.care. And co-founder of Nourish for Caregivers, a national faith-based ministry, supporting caregivers. She serves on the Board of National Association for Catholic Nurses and the Illinois Catholic Health Association. Deb believes family caregivers are crucial partners to the healthcare team and her work reflects this belief. Her passion is supporting caregivers with the practical, emotional, and spiritual resources necessary to maintain their financial, mental, physical, and spiritual wellbeing. Deb is a clinician, speaker, and number one best selling Amazon author. She has over 40 years of experience in healthcare, stepping away from her corporate career in 2014 to focus on the needs of family, caregivers. Faith, family, and transformational work fuels her soul. She’s honored to care for her 96 year old father and 88 year old mother, which Deb considers to be her most important and challenging role yet Welcome Deb. Thank you so much for joining us today.

Deb Kelsey-Davis: 1:30

Thank you, Rayna. Thank you for having me here and it’s a delight.

Rayna Neises: 1:34

Well, I know your caregiving journey with parents has lasted for quite a long while with lots of ups and downs. So share with our listeners a little bit about how your parents are fragile in these final years and just some of your experiences in caring for them.

Deb Kelsey-Davis: 1:50

Sure. The last couple of years in particular have been really challenging. My mother was diagnosed with lung cancer last year. My father had a stroke two years ago and now has congestive heart failure. Along with that we’re now up to a little over 36 medications between the two of them. Yes. To manage, to keep track of as well as numerous doctors that keep us very busy with appointments and scheduling and staying on top of that. I’m blessed to have a brother who partners with me in caring for my parents. You know, one of the things that I’ve come to realize is that even though I’m a nurse, as you mentioned, as a clinician, I really believed going into caregiving a little over 15 years ago with them that it would be an easy job. It’d be a snap, but guess what? It’s not. I’m not, I was not prepared for the level of organization required, in muddling, through chaotic situations, the emotional toll and the spiritual toll

Rayna Neises: 2:54

And you are a long distance caregiver, as far as they’re not right around the corner or even in your home. So that adds a layer as well to juggling all the things.

Deb Kelsey-Davis: 3:06

It does. And, and, you know, For all the remote caregivers out there who are listening, don’t let anyone make you feel like that’s a lesser of a job because it’s not. As a remote caregiver. I am still responsible for managing all the medications, all of the insurance, all the coordinating with the physicians and arranging for all of those things. And though I live three hours away. I do travel back every other week to spend four days with my parents and helping the caring hands on. It’s a full time job.

Rayna Neises: 3:38

Mm-hmm It is. And so difficult because like you said, we often don’t realize how hard it’s gonna be. We think that it’s gonna be okay, we can do this, not a big deal. And then every time you get a rhythm and things are going well, something changes and something happens. So that is caregiving. And we realize that, but it definitely is one of the things that makes it really difficult, I think. So what keeps you sane? And with all of these things to take care of.,

Deb Kelsey-Davis: 4:06

A A couple things. You probably figured out by the words that I use around me, feeling blessed that faith is important to me. And my faith is my superpower. It’s, it’s where I derive my sanity. And then the second part is something that I’ve been very intimately involved in, which is using technology to support the craziness and chaos that goes along with caregiving. That’s what keeps me sane.

Rayna Neises: 4:30

I love that your super power. because we all want to have a superpower, but it’s so amazing to think of just God being that superpower because he is the supplier of it all. There’s so much peace in knowing none of it takes him by surprise. He already knows what this journey looks like. And there’s such comfort in that. So I’m right there with you on that one. So tell us more about the technology How has that changed your caregiving and how has it helped you just with the challenge of all of those pieces?

Deb Kelsey-Davis: 5:00

As a nurse I know probably better than anyone how broken our healthcare system is. And if you’re a caregiver, you really know how broken it’s. I was co-founder of an organization called Sagacity.Care and at the time I really got into the throes of caregiving. We weren’t really focusing on caregivers per se. My experience, my personal journey is really what informed the direction amongst our team to really focus in on the needs of caregivers. I’m the use case, for the technology because I’m blessed by having all these challenges. So the technology that I help to co-develop is really focused on communications and the transparency of being able to share, not only with your family, who’s helping you, but with the providers who are providing the care. As well as being able to track organize. And it is probably that organizational piece that initially helped me the most. I can’t even describe for you how long it took me to reconcile medications or any little changes, the piles of paper that you get from all different kinds of people coming into the home or coming back from the hospital into the home, that are just very disconnected and the fragmentation and communications right now that exists. Even with technology and health systems. abismil.

Rayna Neises: 6:21

It’s so crazy because every organization has their own technology. So nobody talks to each other, even when you think, oh, we’re all in the same group, they can access the portal and they can see that I had this procedure or they are taking this medication. None of it is happening. It, we can put it all on paper. We can put it all on the computer, but if none of us are connected, then none of it helps anything. So how exactly does the app help you with that?

Deb Kelsey-Davis: 6:52

So inside of Sagacity, there is something called Info. Keep. And what info Keeper is designed to do is number one, help you organize all of the disparate health information that you need. So for example this became a reality for me when I ended up having dad go to the ER and we land there and I’m like, okay, dad, where’s your insurance card. We don’t have a wallet. We don’t have insurance information. We don’t have a power of attorney. We have nothing. And so that was a harsh reality of scrambling. So one of the first things that the app does is it helps you to organize and store. All of those important pieces of information, everything from important documents. My dad has a stent. He also has various prescriptions that relate to his eyes. You know, all of the things that relate to power of attorney for health. Anything that you can think of that you. You need to be able to share, to be able to account for the kind of care that your loved one needs is in there, as well as being able to organize and track all the providers. And, oh, by the way, I loved it. When you said this Rayna today, I am managing across six patient portals for my parents six and they’re not connected,

Rayna Neises: 8:02

Nope.

Deb Kelsey-Davis: 8:03

but I have all of that integrated within Sagacity.

Rayna Neises: 8:09

The portals seem like such a great idea, but I found that they’re just really not that helpful, especially, I guess it opens a communication to the doctor that we didn’t used to have, but at the same time, that depends on what the doctor’s reading their own messages. And sometimes they aren’t, sometimes they’re being screened too. So it can be really difficult to have that communication. And I do think that sometimes as caregivers. especially when we first start this journey, we are sadly mistaken to believe that our doctors are communicating with each other. It’s not happening. Yeah.

Deb Kelsey-Davis: 8:42

They don’t. And one of the things that I wanted to, to touch upon here with regards to technology. As a nurse. I came out of a school of thinking that technology was not the answer. Okay. I had a bias there. I really felt that you need that full human intervention and that the nurse or doctor or whomever you’re interacting with on the healthcare side were really going to be your advocate. What I’ve learned through the role of being a caregiver to my parents, is that the caregiver you are the quarter.

Rayna Neises: 9:13

Mm,

Deb Kelsey-Davis: 9:14

You are the quarterback, because remember in healthcare, there’s only snapshots that they encounter you. It might be a hospital admission, it might be an office visit, but all the rest of the time who experiences the care and management of the loved one’s health. It’s you. And you’re the quarterback, you’re the advocate. And that’s really what this technology then aims to do is to fill in all those gaps to be able to. Health tracker information. For example, my dad, he his blood pressure’s all over the place. And so within Sagacity, I’m able to keep a healthcare journal on him. Same thing with my mother, when she’s doing her oncology. I’m able to track their pain, their symptoms, but I’m also able to have their blood pressure recorded. Today, we actually have home care agency, private caregivers who come into the home who, because this app is so integrated with Alexa, they can actually just voice record the blood pressures that they’re taking in the home. I have access to it, and then I can share it with their PCP. We’ve been able to manage. My dad’s blood pressure and I justice medications all virtually because of having information that a doctor would never have. They don’t know what’s going on inside the home. That’s what brings me sanity and helps me to coordinate care, not to mention a calendar that my brother and I share for scheduling and transportation. So it’s eliminated all these piles of paper and all the chaos.

Rayna Neises: 10:45

It’s amazing. I know, as we cared for my dad, we were at and pencil method, but we did try to move to technology and we used a Google form. And so, because I was doing every other weekend, by that point, I wanted to know, I wanted to see how things were going between visits. It was a lot of data entry and it didn’t really go so well. So I love that that’s integrated in such an easy way that even your private caregivers can come in and just learn a system that’s easy for them and be able to report that information. I think it’s so important to see a big picture as well as those small pieces. And so getting that all into one place can really make a big difference I’m sure. So I love that definitely sounds like a tool that would be helpful. How hard is it to use and set up and how much time does all of that take??

Deb Kelsey-Davis: 11:40

Well, that’s an excellent question. And it certainly is a journey. We recently just completed two pilots because we believe that we have to hear from caregivers if it’s easy to use or not. So let me just be honest and share with you that we got feedback from one of our pilot groups that they were having difficulty and challenges with navigation. So by the end of the pilot, we had made changes based on the caregiver’s recommendations, what they were asking for and we had people who initially started out saying they were challenged. Tell us I’m a power user now. So I think that if you work with any technology and you look at any technology there has to be a willingness on the other side to make adjustments. And so I couldn’t rely just on my own experiences. We needed to talk to others and I think that’s been a huge success.

Rayna Neises: 12:28

I love that. And I think the thing, like all of us know is there is no two caregivers that are just the same, just like there are no two people that we’re caring for that have the exact same needs. So we do have to find those things that work best for us and be a little agile with being able to help us get there. Realizing that, you know, getting over the hump of the initial data entry and the initial setup and learning, it’s just a learning curve. And you figured it out on your phone when you got a new phone, right. You can do that in an app as well, and be able to have easy access. And I think improved communication amongst everyone is such an important piece. What has your study shown has been the most benefit for people?

Deb Kelsey-Davis: 13:08

So, and we incorporate this now into what we recommend people do when they first encounter our technology. And I would say for any technology, first thing is on your own, really identify who is your care circle, and then place that inside the technology. That’s the first step, create your care circle. And that is not only your providers or care team that’s professional, but your family, your neighbors, anyone involved. Right. The second thing is to get organized. So, you know, before you try to draw any conclusions, you know, you talked about the data entry piece, at Sagacity, they’re trying to make it easier by using. Alexa to get entry information in also exploring Bluetooth technology so that it can just automatically be dropped in, but get organized, get your papers, get everything that you’ve got laying around. Get it organized in one place. Third thing is connect with others in a group. We talk about technology and it is a wonderful thing, but it’s an enabler. It’s not the sole answer. So within the technology platform, within Sagacity, there are groups that exist. Where people could connect with other people, sharing similar journeys to support one another. The last piece is share it. So you may be collecting information. You may have information organized, but with any technology always look for the ability to share. Make that information transparent to be able to share amongst your care team. Right? Because if you can’t then again, why are you collecting information?

Rayna Neises: 14:39

So it definitely sounds like there are many layers to what’s available and being able to access those things and then take it step by step and just building it into the tool that really supports you. As a caregiver, we know time is so valuable and so difficult, but it’s understanding that again, that learning curve initially is gonna take more time than it will once the rhythm starts going. And like you said, just being able to get in rhythm and know what’s most important for you to collect at different times with different health crisis, you end up needing different things. So maybe tracking the blood pressure isn’t as important to some people as it is like with your mom, as it is with your dad. So being able to make that flexibility and really use it for what’s beneficial to what you need.

Deb Kelsey-Davis: 15:25

And that is absolutely And I know even personally my, for myself there may be periods of time where I pray for, and I receive stability with my parents. They reach a plateau now while there’s information going in, it’s not nearly as intensive. However, Here’s where you get the value. With one emergency room visit, I saw the physicians about ready to give my father a very big intravenous dose of hydralazine, which is to address his blood pressure. And I said, stop, let me show you something. And so I whipped out my phone and I showed him all the blood pressures that have been taken at home. Because again, remember, healthcare has no idea what’s happening outside of the hospital. He looked at that and he said, oh, oh, I can see what the problem is. It’s not that we need to give more medication. We need to change the times of day that medication’s being given. This is why it’s not being controlled. My father’s blood pressure was very volatile, meaning it could drop in a heartbeat or it could go up in a heartbeat. Had he given that medication, we could have had a bigger problem on our hands. Instead it informed. what the ER, doctor needed to have to be able to make a decision that was important. There are many days where I’m not actually making an entry into Sagacity, and then there are many other days where I am, but it’s a tool that’s always there to support me. And that’s, what’s most important.

Rayna Neises: 16:51

So helpful listeners. I hope that that has given you an insight into how you can implement technology to help you. I think technology’s always changing and growing, and there are a lot of different options out there, but I think just having a little peek into some of the things that could help you definitely can send you on that hunt to find the one that works perfectly for you. So, Deb, let’s end up with just kind of talking about one thing that you do every day that really helps you make a difference as you’re caring for your loved ones in this caregiving season.

Deb Kelsey-Davis: 17:23

I’m a proponent of self-care and one thing that I prioritize is first thing in the morning, I get my cup of coffee and then I go and I steal away to a little space, a little cubby hole, here in, my home, where I pray. And I actually use an app to help me because some days my mind is just racing and it helps me focus and slow down, but I make that time to pray and to meditate.

Rayna Neises: 17:48

So the using technology can look different in all different areas of our life to really help us to be able to plug in. Our phones have become. Necessary evil. I would say but it becomes something that’s just always with us. And so I think that’s where all of the growth in the tools that support us as caregivers. We can take advantage of those things, lots of different opportunities to help support us in our caregiving season. But that wellbeing is key and really learning how to nourish yourself. And for us, it’s spiritually, really taking that time to pray and to focus in on the Lord makes such a big difference, for others they might be finding exercises that first step, and then some of the meditation or other things can be helpful. But I think it’s important for us to learn those routines that do nourish us. So thank you so much for joining us today and just for sharing your experience and wisdom.

Deb Kelsey-Davis: 18:44

Oh, thank you so much Rayna. I pray that this is helpful to others.

Rayna Neises: 18:48

Did you know that September was Self-care Awareness Month and in honor of self-care awareness month, I’ve created a simple and I mean, simple five day challenge for you to consider your self-care. Is there something that you can add to your life to help you take better care of yourself? Join me for the five day challenge, September 19th through 24th, to learn more about ways that you can incorporate self-care into your daily routine. Sign up today at a www.aseasonofcaring.com/selfcarechallenge. I look forward to having you join us. Thank you for joining us again today and reminder that A Season of Caring Podcast has been created for the encouragement of family caregivers. If you have medical, financial, or legal questions, be sure to consult your local professionals and take heart in your season of caring.