Rayna Neises: [00:00:00] Welcome. This is Rayna Neises with A Season of Caring Podcast, where we share stories of hope for family caregivers breaking through the loneliness and busyness of life to see God in the middle of your caregiving season. I’m excited today to introduce you to Joan Borton an award-winning writer, blogger, speaker, and disability advocate. In 1995, she married Jerry, who was born with cerebral palsy. Joan recently published Marriage Ability Embracing the Richness of a Marriage Affected by Disability, that is available on Amazon.

Together, jerry and Joan Co-founded Luke 14 Exchange Inc. To mentor and coach people affected by disability and encourage their families. They also equipped faith communities to engage effectively with people affected by disability, having served as a paid caregiver and now as a family caregiver there’s little Joan loves more than sharing in the journey of other [00:01:00] caregivers. She’s a member of Word Weavers International , a contributing writer for Content Magazine, and serves as president of a critique group of writers with disability. When faced with a little downtime, you’ll find Joan reading in her hammock, writing, swimming, or working on a jigsaw puzzle. Follow joan@joanborton.com and luke 14 exchange.org. Welcome, Joan. I’m so excited to have you , welcome Joan. Thank you so much for joining us today.

Joan Borton: Thanks Rayna. I appreciate the invitation and glad to be with you.

Rayna Neises: So I introduced Jerry A. Little bit here in the intro, but you tell us a little bit more about him and what it’s like to be a family caregiver.

Joan Borton: Sure. Wow. That’s one of my favorite subjects to talk about my husband, Jerry, he’s a great guy. I wish you all could meet him. He was born with cerebral palsy and has used a wheelchair since he was in fourth grade, so it’s pretty much been his lifestyle all along. His mother told me that [00:02:00] he was born with a suitcase in his hand.

He just was ready to take on the world from the moment he came out of the womb and he has done that. And so we met because we both were working in the field of disability and we were at a conference and we met there. And for six years we were just conference buddies. And then after the sixth year, he said, to God when he went home to Indiana. I wish there was somebody like Joan in Indiana. I was living in California at the time and at the end of our busy summers of ministry, he said God prompted him to say, you know, the phone works to California.

So

Rayna Neises: I love that. God’s so good.

Joan Borton: yeah, he called me at home the first time we had spoken occasionally office to office, but this was the first time he called home and it’s like hmm, something’s different here. And but because we had this foundation of friendship for all these years at the conferences, et cetera, we just continued that friendship, developing it long distance. I. and we would periodically [00:03:00] well we did email dating and that’s when we paid by the bite, our phone dating, and we paid by the minute for long distance back at that time.

And then we would fly once a month to see the other and meet some of our family and friends and that sort of thing. So we laughingly say that after a little less than a year that we had to get married, but not in the since it is often referred to with that line, but because we couldn’t afford to live apart anymore, our phone bills and our airfare bills were killing us. So we’ve been married now for 28 years. Jerry was independent in his care when he was single and living on his own. When he traveled, he would get people to help him because he didn’t always have the same routines. So we talked about it and decided that I would help him with his care once we got married, I’d worked as a paid caregiver for many people, so it wasn’t a big deal to me and we knew we’d save him time. Well, what we didn’t count on was how much [00:04:00] time it would take for me, but it’s still been a benefit. He has gained so much in his day by having me help him along the way, and it’s strengthened our relationship in a lot of ways because of how much we share together and are there with one another. You’d love him if you get a chance to meet him. He’s a really fun guy as well as a really caring guy who tries to follow after God’s heart.

Rayna Neises: Well, I love that. Most important right there is that willingness to fall after God and even follow to the point of being able to pick up that phone. And I bet that was a really scary first conversation for him to kind of bridge that gap and say, okay, let’s try something new. So that’s so fun.

Joan Borton: Yeah, it was, it’s kind of funny over Valentine’s Day when we were dating was the first time he mentioned the love word, you know, and we, we kid about that. And it goes right with what you just said. ’cause he, when he called me, he said, I think I might be falling in love with you. And he laughed and I’m, I’m like, you think you might?

And, and once [00:05:00] I assured him that I also loved him too, then he is like, well, I do love you. But he needed to like, kind of test the waters first on it.

Rayna Neises: yeah. definitely. And I can relate to the long distance, not that long, but Farmer and I dated for five years. We were 90 miles apart. Trying to navigate that. But again, we were lucky enough that long distance phone calls and all of those things were free by the time we got to that point with cell phones. So it was definitely different day and age, and some people will remember that and some people are like, what you.

Joan Borton: Yeah.

Rayna Neises: So share a favorite story with us about you and Jerry

Joan Borton: Oh my goodness. There’s,

Rayna Neises: So many

Joan Borton: So many

I think one of the things I love most is how he helps me put scripture and life into perspective. One day I was reading scripture, which I was so familiar with, but about submission in Ephesians and, and I got, I guess, a very [00:06:00] myopic point of view because I went to him and said, you know, it’s just not fair. The Bible says I have to submit twice, once to God and once to you. That’s just not fair. And he’s like, oh, you are right. That’s not fair, because all I have to do is die. he said very dramatically. And it’s like, oh, you know, you’re right about that. If my husband is willing to make decisions that would put his life behind my own and lay it down for me. Why would I even think twice about saying I want to, in a biblical way, submit not the way it often happens in society, but in a biblical way. So I, yeah, I, I just appreciate that he is willing to share his perspective and the way he sees and views things. He’s, he’s a good rock for me.

Rayna Neises: That’s awesome part of the reason why Farmer and I dated for five years is that about the three-year [00:07:00] point, we were talking about marriage and he said to me at the time, you know, I really love you and I, I do see eventually getting there. He said, but the truth is I don’t think I love you enough to die for you yet,

Joan Borton: Wow.

Rayna Neises: And I was like. I’m not sure how I feel about that. . I mean, yes, exactly what you said. I appreciated that honest statement, but at the same time, it’s kinda like what, so it, yeah, it is definitely important that we have an understanding, but I love how the perspectives come in and how they bring balance to our life and. No matter who we’re caring for, we can find that with them. And my experience, of course, was with my mom, who was nonverbal, but my dad who also had Alzheimer’s. And it was amazing the times that wisdom came out even in maybe times they didn’t realize the wisdom they were sharing. So we can learn so much from the people that we’re caring for. It does give us a different perspective on life for sure.

Joan Borton: [00:08:00] Absolutely. Absolutely. I also like that you mentioned the word balance a couple minutes ago because that’s something I think is really important in the caregiver journey is finding balance and. It’s not the way that maybe we found it before we became a caregiver or whatever else. For me, balance means, okay, I have eight balls that need to be juggled today between laundry and errands and whatever else it might be, but I only have bandwidth. Time to maintain four of those balls successfully. So what balls am I going to choose to set aside and say, I know I’m not gonna be able to get to those, so why stress myself in trying to think that I will or I need to, and put those aside. Do the ones that I know I can do, and then next week or the week after I trade the balls, or maybe it’s even the next day and do that and giving ourselves permission to say no to things is just such an important part of balance.

Rayna Neises: It. [00:09:00] So is I talk about intentional. You’ve gotta be intentional with your time and your energy, and that changes depending on the season. Sometimes we have more time. I. But less energy because of the emotional demand or maybe it’s just a matter of recovering from an illness or any of those kind of things. So really considering the whole picture is definitely important, and I think that’s one of the things that we have to learn, but struggle to learn is to let go of some of those things and maybe ask someone else to pick them up. We don’t necessarily have to do everything . It might all need to get done. The family might need to eat, but do you have to be the one to cook it? So what, what other options are there? And I think that’s important,

Joan Borton: And even if it looks like another caregiver, you know, is doing it far better, you don’t know what they’re saying no to and what else is happening.

Rayna Neises: exactly, exactly, That comparison will get you in trouble every time.

Joan Borton: that’s right.

Rayna Neises: So [00:10:00] what’s one thing that surprised you about caregiving?

Joan Borton: There were two things actually, if you don’t mind me doing two, but one was again, the. That we hadn’t accounted for what it would do to my body and to my time schedule to take in. It was just kind of, we can do this and it’s gonna be wonderful. And, and it has been in many ways, but it’s been challenging and hard at times too.

I need to be honest on that, but. As we went on, we thought, okay, if we do all the physical therapy exercises that have been recommended to Jerry to do, and then as I started to care for him more and more and do more physical things, then it’s like, okay, now I have to do these stretches for my back and for my legs, and then I have to keep my arms stretch, you know?

And it’s like we could spend all day doing physical therapy exercises and range of motion and never accomplish anything else. So, It was a surprise that my body would. Kind of begin to feel the effect of caregiving as soon as it did. And just, again, another area [00:11:00] where needed to balance and say, what can we do today and what can we leave aside and how do we manage those kinds of things.

I think the other things I learned about caregiving that were a bit of a surprise different from being a paid caregiver to a family caregiver is how personal it became. We would, I remember early in our marriage we went to, I think it was a restaurant that was not accessible and I couldn’t believe that they wouldn’t be accessible. Now, at that point in time, again, this was nearly 30 years ago, so things weren’t as accessible as they are today. But I became enraged. I was so irrate

hmm.

Get excited quicker than I do. Was very calm about it. He’s like, I’m like, whatcha doing? And it was interesting just to see the mama bear that took over in me because now it was different. My family was being affected by this, not just the person I worked for. So that was a surprise how personal it [00:12:00] got. And then with that, it showed me how selfish I was because I wanted things that would work for me and be easy and realized that it’s not gonna always be about me. I. . So a lot of life lessons to learn in caregiving

Rayna Neises: There is, there’s so much about putting the other one first, and that is something we’re asked to do over and over again. But like you said, I think the true. Sacrifice becomes obvious when it is a 24 7 situation with someone that you love and you’re caring for.

And I agree. So many times I talk to people that are medical professionals and they’ll just say to me, it was so different when it was my dad or my mom. There is a point in which professionally you can check in and check out, but personally. That’s not the way it works. And I think sometimes that it’s also important to realize that that’s why outside caregivers [00:13:00] can also be beneficial

Joan Borton: Mm-Hmm.

Rayna Neises: because they can check in and check out.

Joan Borton: yes.

Rayna Neises: So when you reach a difficult patch or when you reach a point in which the person’s not cooperative, especially with dementia,

Joan Borton: Mm-Hmm.

Rayna Neises: That’s wounding. Personally, it’s hard.

Track 1: You,

Rayna Neises: you try really hard not to take in a personal, but it’s hard. And putting yourself in the path of that every day over and over again can be very discouraging. And I often encourage family caregivers. Is there a way to let that go? If this is the issue, for example, I had a, a lady that I was coaching and getting her mom to bed at night, which I experienced as well, was difficult. She had kids at home and she had her own dinner to deal with, with her family, and she was trying to care for her mom. And her mom was less cooperative in the evening than she was in the morning and during the day.

And I just said to her, most people think about bringing in a caregiver in during the day. But what if you were to have a caregiver to come in and do the evening routine with her so that you can spend the [00:14:00] time with your kids and you can spend the time with your husband, because there’s no sense in having the frustration become a part of your relationship if you can help it. I think that can be really

Joan Borton: That’s

Rayna Neises: kind of

Joan Borton: Mm-Hmm. .

Rayna Neises: look at it in that way. So it

is the personal side of it. It it is personal and so.

Joan Borton: Mm-Hmm.

Mm-Hmm.

Rayna Neises: And it’s important to realize that that can affect our perspective.

Joan Borton: Yes.

Rayna Neises: I know you’re enjoying my conversation with Joan. She’s so much fun has so much wisdom from her years and years of caring for, Jerry hanging out with Jerry loving Jerry. I just, I love their relationship and the joy that she brings. So. I just wanted to let you know that I am looking for sponsors. So if you’re interested in sponsoring an episode of a season caring podcast, reach out to me at rayna@aseasonofcaring.com. And I would love to share more about that.

This episode has been brought to you by No Regrets. Hope for Your Caregiving Season. It’s [00:15:00] my story of caring for my parents during their journey with Alzheimer’s disease. It’s filled with heartwarming stories, practical tips and tools that I use to bury them without regrets and to have a life that I loved even while I was caring and after they were gone, No Regrets: Hope for your Caregiving Season is available everywhere that you buy books. I do have special signed additions with some gifts included available at www.noregrets-book.com It’s a great gift or even a treat for yourself. I would love to send you a signed copy. If you just go to www.noregrets-book.com, you can find links to the major retailers as well as to that special edition. Thank you again for being a part today and let’s get back to Joan.

 Share a time that God really showed up for you during your caregiving season.

Joan Borton: Okay. I like the way you ask it. That there, it, it takes me back to there was a time when Jerry had to go to an [00:16:00] early morning meeting and that required us to get up, I think around 4:30 or so in the morning, which we’re not morning people,

Rayna Neises: Me

Joan Borton: get him up and out the door. We had to do that and he got in the van and he left to go to the meeting, which wasn’t very far away. And so my plan then was I’m gonna take a a nap again for a little bit ’cause it’s early. Then I’m gonna get up and have a nice, leisurely quiet time, extra time with God. And then I’m gonna go to the Y and swim. It’s a great way to start my day. I’m taking care of myself. This is perfect. Well, I had barely laid back down in bed when my phone rang and I saw it was Jerry’s number and it’s like, what’s going on? He said, I’m coming home. My chair shorted out.

Rayna Neises: Oh

Joan Borton: And so he said, I’ll need you to meet me in the driveway. So when he pulled in, I went out and he never even got out of the van to go into his meeting because as he went to pull out his chair. sparked

Rayna Neises: Mm. ,

Joan Borton: He was safe in there, but he [00:17:00] couldn’t use his chair anymore and the power to get in or out of the van or do anything else. So I had to kind of yank him and pull to get him between him and his chair together the power chair, it’s about 500 pounds, so yanking that out of his lockdown and then get him out onto the lift, which is about four feet off the ground, three feet off the ground. And hope we don’t go over the edge with kind of yanking and.

Get ’em down, push ’em up the ramp. Those ramps don’t seem steep when you’re operating under power, but when you’re pushing that much weight up, it was, and our thought was, okay, we have a backup chair in the garage. I’ll go get that. We’ll transfer ’em to that chair. We’ll worry about fixing this chair later. And he can be back off to his meeting and I’ll go on with things. Well, that transfer didn’t go quite as quickly as we had hoped. Plus, Jerry then said, after we got things mostly done, he said, you know, it’s gonna be too late to go back to that meeting. I think I’m just gonna go back to bed and kind of take a, an app and. He’s like, would that be okay? I’m [00:18:00] thinking, would that be okay? No, not really. But I did say that like, okay, he’s been through a lot too, if that’s really what he needs. So I said, sure, I’ll be glad to put you back to bed. So did that. And that also meant that I wasn’t gonna go to the Y because I needed to be there when he wanted to get up again and that sort of thing. And So I put him back to bed. I went out to have my quiet time and I’m like. God, my life is not my own. This is just not fair. My life is not my own. And I was complaining to God about that. And he said, isn’t that what you asked me to have your life be?

I’m like, what? And it reminded me back when I was, I think I was even in high school when we were asked in a project to write our own epitaph. And even at that point I wrote that I wanted to be known as a woman who loved and served God by loving and serving others.

Rayna Neises: Hmm.

Joan Borton: And, I’ve replayed that in my head many, many times over the years. That’s still what I want my life to be about. [00:19:00] God said to me, so isn’t that what you’re doing? Loving and serving your husband and loving and serving me? So you know, if you’re doing that, don’t you think I can take care of the rest and get you the other pieces that you need in your life? It’s like, okay, yes, Lord. Sleep well Jer and know, we’ll start again when you get back up. And so, yeah, just a lesson. And it’s not always gonna go my way, but I’m doing what God’s asked me to do and so he’ll either help me tweak those desires, take them away, or give me the strength to work through what doesn’t happen right then.

Rayna Neises: Such a good reminder and like you said, I think we often say those kinds of things, but the truth is, it equals something we didn’t think it was going to , and so, really being able to have him call you on the carpet on it, just to remind you, is it’s sweet that he does that for us because sometimes we need it, especially when we find ourselves having those little pity parties, [00:20:00] which are

typical. We have ’em so

Joan Borton: He made us, He knows that.

Rayna Neises: Yes.

Yeah. He does. And the desires of being that the hands and feet of him again, is something all of us, that are servant minded have. It’s just sometimes we wanna be a little selfish too. Right?

Joan Borton: That’s right. Wanna do it our way?

Mm-Hmm.

Rayna Neises: Yes. On our timeline and our agenda always right?

Joan Borton: Absolutely.

Rayna Neises: And so few, so few times. Does it actually work that way? . So what would be one thing that helps you to live content, Love well, or care without regret?

Joan Borton: Hmm. You know, those are great words, the way you talk about it. Each there I remember Jerry telling me early on that different care, and he’s had other caregivers over his life besides his family, when he is traveled and done other things and been in college and other places, but that sometimes [00:21:00] when his body didn’t cooperate on the schedule that everybody had planned for it to cooperate on. And so he would need to get somebody to help him with a task middle of the day that wasn’t supposed to happen until evening or whatever. He felt often that it was a real inconvenience to the person who was helping him and that they kind of were bothered by that, even though they never told him that. So I tried to make it a point from that point on when he told me to never let him feel like he’s a bother to me. You know,, I haven’t always succeeded at that. But even when he has to wake me up in the middle of the night to say, I need a change with position or whatever it might be. I’ve made it a point to try to say after I help him.

Right before I fell back to sleep. I love you, Jerry, and it’s just a way to remind myself that and to help him remember that it’s not a bother, even though I sound groggy and [00:22:00] frustrated. Maybe right now. I still love you and I will do this for you because of that love. So again, I don’t do it all the time. Please don’t put me on a, anybody on

a pedestal or gimme a halo for anything. It’s not there, but, but that does help me to feel like when the day comes, when I’m not a caregiver anymore. ’cause it will come either because I’m gone or he’s gone. But one day I won’t be a caregiver. I don’t have to face that regret. Like I could have been nicer, I could have been more patient.

Rayna Neises: Yeah. So important, and I think that is something that applies to everybody in our lives, but we often have a low standard for ourselves when someone interrupts us and interrupts, again, I I’m, it reminds me of Teepa Snow talks about as you’re dealing with people with dementia, if you’re pushing your agenda, they’re gonna push back because their agenda doesn’t match your agenda. And I think that’s so true just in relationship. When we’re interrupted [00:23:00] and we have an agenda, it can feel frustrating.

Joan Borton: Mm-Hmm.

Rayna Neises: And when we become aware that their agenda and our agenda just aren’t aligned, it’s okay. We can make that adjustment to, follow their agenda. It’s not a big deal. Then that allows it to be a non frustrating situation. So even just the reminder, I think can be really helpful of just taking that deep breath and being like, yep, I had a plan, but . We just hold ’em open-handed .

And I think That’s what caregiving does for us, is it helps us to learn to hold things more open handedly because the agenda hardly ever goes the way we think it’s gonna, and even for them too. So I, I really appreciate that. I think so many times. The person that we’re caring for doesn’t articulate that, so I love that he was able to tell you that and you were able to see, in those situations how your behaviors might make him feel that way,

Joan Borton: Yeah. And certainly it’s a lot more difficult, I think in in what was your situation and [00:24:00] folks who are working with people with dementia and, and brain and memory problems. Thankfully, we’re not at that point. I. Who knows, and I might get there before Jerry gets there , but we, we never know. But we can at least talk about it and rationalize it.

Now, he’ll say to me often, I know I’m gonna need to do this sometime during the day. Would it be better if we go tackle this now or should we wait a couple hours and do that? And so we’re, we’re learning ways to ebb and flow since then. But again, that’s a blessing and a benefit of somebody who has the ability still to reason and talk that through.

Rayna Neises: Yeah. definitely. And the conversation, just the communication is so open for you guys to be able to, I, I think it takes maturity for us to see our own needs, no matter if that means we have to ask someone else to help meet our needs or if we have to make our own way of meeting our needs. So we have to become self-aware enough to realize what we need, to then be able to have the conversation to ask for what we need.[00:25:00]

And even as a caregiver, I’m sure in your relationship you communicate that as well. I’m gonna be doing this at this time. Is there something you need before then, or can you wait till after? It’s just the way of being

Joan Borton: exactly. Mm-Hmm.

Rayna Neises: work together as the team.

All right, so we’re down to the one last thing. Do you have one little nugget that you’d like to pass along to other caregivers?

Joan Borton: I do, I I know what comes by and we even just talked about this last night again, is, probably. I hope many of your listeners also try to live their lives by the word of God. But that’s what, what obviously you and I do, and one of the verses that has become really meaningful to me recently is John 16:33 that says, In this world you will have trouble, but be of good cheer for I, Jesus, have overcome the world.

And so when things fall apart or don’t go right, . If I can remember that, it helps me to not feel like, well, [00:26:00] why is this happening to me? What’s wrong with me? Or what, and, and it’s not necessarily, sometimes it is because of something I did wrong, but for the most part, it’s just things are gonna be bumpy and troublesome at times in this world. And so that helps me not to get so wrapped up in the drama of the things that are troublesome and to rejoice in the fact. Jerry likes to put it as I’ve read the end of the book and we win.

Rayna Neises: Yeah.

Joan Borton: Big, you know, and we do. Jesus has overcome. And so if I can clinging to him and if my fellow caregivers listening can clinging to him and understand, that’s gonna be some, some challenges, but, but we’re overcomers through Christ.

Rayna Neises: That’s so good, Joan. I really appreciate that. And a support group that I lead. I always say we walk our loved ones all the way home and we’re, getting to the end of some of the journeys. And it’s hard because that’s not our instinct. Our instinct is, let’s hang on. You know, let’s keep doing what we need to do.

 I love that verse . [00:27:00] The take heart, you know, that’s it. Jesus tells us that we can take heart even in the trials and the difficulties we can take heart in him. We are overcomers. It doesn’t necessarily look like what we want it to look like to overcome, but we have that promise and he is faithful.

So it’s so important and I appreciate that encouragement because in the thick of it. We need to remember that, that it’s not number one, it’s not a surprise. I say that all the time. God’s not surprised by anything. And so he knows. And number two, in the long run, we will overcome. And what that looks like might not be how I define it, but it is how he defines it, and that’s always better than my definition anyways. Right.

Joan Borton: Amen. Amen.

Rayna Neises: Again, Joan, just tell them how they can find your book and stay connected with you.

Joan Borton: Okay, well you can have two options. I have a personal website that I try to blog on fairly regularly, and that’s Joan [00:28:00] Borton, my name J-O-A-N-B-O-R-T-O n.com. And then also our ministry blog and website is Luke. 14. The number is one four Luke one four exchange.org, and you can connect with me through either or both of those places and you can find information at both of those places on how to order my new book, Marriage Ability: Embracing the Richness of a Marriage Affected by Disability, and it’s also available on Amazon.

Rayna Neises: That’s great. Thank you so much again, Joan, for just sharing your years of wisdom and your heart of compassion for caregivers. I appreciate it so much in you.

Joan Borton: Thanks and I appreciate you and the Content Magazine. Thank you

Rayna Neises: Thank you

 Listeners, thank you for joining us today for Stories of Hope with Joan.

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