Finding Hope and Connection: The Power of Community in Dementia Support

Rev. Beth Long-Higgins 00:07
Hello and welcome to The Art of Aging, part of the abundant aging podcast series from United Church homes. We are on this show taking a look at what it means to age in America and other places around the world with positive and empowering conversations that challenge, encourage and inspire all to age with abundance. Today, I am pleased to introduce to you Daphne Johnston to the show. Daphne is the founder of Respite for All, otherwise known as RFA. She had worked for 15 years as an executive director and Senior Living Administration, when her pastor, Dr Lawson Brian, asked her to develop a volunteer model to provide support for families living with dementia in Montgomery, Alabama, together, they learned that a volunteer ministry could galvanize a community and change the culture of how we all live among our friends with dementia and Alzheimer’s diseases. This is me, this is my word. This is Daphne’s passion project. That first program began in 2012 and in 2018 she teamed with care partner Warren Borrow to establish the respite for all foundations with the goal of scaling their successful model of care for families across the US. Her book, Reclaiming Joy Together, is a guidebook for why and how to begin an RFA community today. There are, I believe, 52 communities that have launched the program in 15 states. Another nine are scheduled to launch in 2025 and another and that will add another three states to the list. Daphne is known as boss because she is a fierce advocate for families living with memory loss. And although that is not how I address her, I can affirm that fierce advocate is definitely true. De Daphne, welcome.

Daphne Johnston 02:00
Thank you so much. I have to correct you. I had a 90 year old fella that had big fit Ronald Reagan hair, and he was always searching for three fingers of whiskey down in the church basement in our respite program the first week, first day, he comes up to me and he says, sugar, you sure are cute. Dang. You’re bossy. Well, get stuck, and nobody even knows my name is Daphne, and Montgomery is boss. Thanks.

Rev. Beth Long-Higgins 02:29
You know, no one else has started the podcast by sharing a story about somebody looking for whiskey in the church basement.

Daphne Johnston 02:35
Some uglier words than Dang, but it was good. It was

Rev. Beth Long-Higgins 02:41
Just a reminder that this podcast series is sponsored by United Church homes, Ruth Ross Parker center for abundant aging. To learn more about the center, including our annual symposium in October, visit www dot United Church homes.org, backslash Parker, dash center. So as I mentioned in your bio, Daphne, you had been working in the senior living world for about 15 years when your pastor proposed this idea. What led you to that conversation and to your willingness to try this new thing?

Daphne Johnston 03:10
Well, I had been working with older adults all of my life. My mother worked for the extension service, and three days out of the year, I was checked out for an elder camp for 18 years of my life, and it was me and 300 seniors in a big church camp. And I knew I was going to work with senior adults, I just didn’t know how. And for 15 years, I was in long term care, memory units, assisted living, independent living, and I married two small children, and my minister said it’s time for you to come to ministry because it would be a lot lighter load. Little did I know that was not the case. It came 24/7 with two small children and a loving husband, but we began our ministry with two people living with Alzheimer’s in the basement of our church, and 14 volunteers, and now we have served 1000s and 1000s of volunteer hours. I think we logged 220,000 hours of volunteer time in 2024 alone. That is minimal paid staff.

Rev. Beth Long-Higgins 04:12
That is absolutely amazing. And I want to point out that you scaled this. You began scaling this. I’m going back to check the day, the dates here, you began scaling this, like in 2018 we did. So this growth has happened literally during the pandemic.

Daphne Johnston 04:34
It did. I think the only thing that did not close during the pandemic, we had roughly 20 to 25 respite communities that we had begun, mainly across the southeast. Pandemic happens, and I thought, you know, we’re never going to make it. We had to retool like everyone else, and we began having volunteer parades out in the parks and the church parking lots. Families would come by weekly for these parades. We made meals in our homes. Volunteers did. We found a way to stay connected. And do you know that none of our communities closed during the pandemic, and what did we do afterwards, but just doubled, and it was just God’s blessing for sure.

Rev. Beth Long-Higgins 05:15
So tell me about the process of going from a single site to this idea of scaling beyond a single site.

Daphne Johnston 05:26
Let me tell you how God works. So we start with two people with Alzheimer’s and dementia in the basement, a first Methodist in Montgomery. We open it to everybody. We said this church doesn’t want to own this. We want to be the Community Catalyst. We want Episcopalians, even the good Baptists, our Jewish friends. We wanted everybody, right? It was our Jewish family that we had, that had a daughter in Birmingham, Alabama, that said, Why is this not everywhere? She was crying with joy. She’d not seen her mother smile this much in years. It was the Jewish services of the Collect family services that multiplied at the very beginning. And then we had the idea, hey, we don’t need to go raise money for brick and mortar. We need to raise money on how we’re going to spread this volunteer model. And so then other churches began, organically, to come to Montgomery and find out what we were doing when we grew and then in 2018 Warren Barrow, he was the CFO of a large construction company. His Bride, at 48 had early onset Alzheimer’s, and she had a frontal lobe. She could barely speak, but she was energetic. She loved to dance. She loved being a PTO hospital volunteer, elementary school volunteer. And our model, what attracts people is people living with dementia still are plugged into work. We do service projects and throughout the day, it’s not a babysitting service. It’s how do we all still recognize the gifts we have left, and because his wife still found purpose in helping others in our ministry Funeral Home parking lot the day we buried her, he just gave me the biggest hug, and he said, I’m going to give you a lead gift of $50,000 we’re going to start a respite for all Foundation, and you’re going to take this to every state in the union or every community that we can find, because every church needs this model, and that’s where it began, and we’ve just replicated ever since.

Rev. Beth Long-Higgins 07:20
So why don’t we step back for a minute and tell us what happens? What happens? Okay,

Daphne Johnston 07:27
so I get so excited talking about rest, but we forget the 10 o’clock to two o’clock. So the volunteer model, typically 90 to 95% of these are all in churches, but now we’re breaking out in senior living senior centers. Right? New organizations are seeing what we’re doing, but typically, one day a week, two days a week, we will launch a ministry from 10 o’clock in the morning to 2pm and fill up with Tai Chi, Yoga group, exercise, ball games. I’m a retired athlete. I still play tennis a lot, but I play volleyball. People love to compete, right? We do a lot of ball games, hand eye coordination, things we do art and music. But another thing that draws people to our ministry and our programs are the service projects we do. We’re intentional about creating opportunities for that 48 year old with early onset, that 72 year old rotatorian that’s built your community, that’s been the pillar of your church. They have given of themselves all their lives. They do not want to come to a babysitting service, they want to come where they feel purpose and they feel wanted and where they can contribute. And so through those hours of 10 to two, we’re training our volunteers how to create space and how to build our neighbors up. That is living with dementia. How do we build them up to still contribute to the group, and that’s what’s so addictive about what we do. So

Rev. Beth Long-Higgins 09:03
you mentioned numbers, if you have two people, which is what I think you started with. You had 12 volunteers, right? Does that stay at a two to 12 ratio? As Ron, let me tell

Daphne Johnston 09:15
you the magic of it. It is good. It is so good, this is the breakthrough moment, right? So in my almost 20 years of long term care and senior programs that I had been a part of or witnessed a typical volunteer model, you’re lucky if it’s one on one right in the beginning of respite, it’s hard to get local caregivers to understand what you’re doing, right? And so with Memory Cafes, with respite models, with any kind of service that we’re doing, it’s hard to get a loved one to bring their person out while living with a challenge. So you typically only start with two or three participants. And I know God had me start that small, because my favorite. Verse to quote in this whole ministry, Zechariah, 410 do not despise small beginnings, for the Lord rejoices when the work begins. Right. Those two people, 16 and 80 years old, began this whole movement. And yes, we kept the ratio number at 10 volunteers and two participants. And let me tell you why. Because if we had two volunteers come to sit with two people with dementia for four hours, that’s a babysitting service. That’s not energy, that’s not group dynamics, that’s not all the ball games and all the things that we do, you have to have 10 volunteers. And so when you explain that in your volunteer training, people have this aha moment of, yes, I’m still needed when there’s 10 of us and two people with dementia. Until you go over that concept and training, people can come do the training and fall away because they think they’re not needed. But we train our directors on how to recruit these volunteers to understand this new mindset, right? And so as our participants go up to say, seven or eight participants, we still keep about 1212, to 15 volunteers, and then as we get to 10 participants, we might come down to about 12 volunteers. And as our participants grow, our volunteers kind of even out, but we have got a model where we have to cut volunteers back that is so rare while working with dementia, right?

Rev. Beth Long-Higgins 11:29
Wow, absolutely amazing. So you talk about training your volunteers, tell us about the training. What all is involved

Daphne Johnston 11:36
this train. Over the years, I have seen training that was amyloid plaques and neurons and hard to explain chemical reactions in the brain. And you know what? There’s a time and place for all of those. But in a social model setting of respite such as we have, our training is how to be a better neighbor. How do we improve our dementia communication skills? How do we build our neighbor up? How do we make it where we’re all living with something? How do we set them up to succeed? How do we do the ball games where everybody’s interacting and it’s not us against or versus them, we are all in it together, and it’s a contagious spirit that is unique to what we do that’s our training is, is not brain science.

Rev. Beth Long-Higgins 12:27
Now, I met Daphne two years ago at an ASA, yeah, it was before Canada, it was Atlanta, right? And Daphne had a table set up in a large space where other people were talking about their programs, and a colleague of mine came and said, Beth, you have to meet this woman. He literally dragged me, Greg, me across the hall, and we stood, you were talking to somebody, and we talked briefly, and we’ve since then been able to engage a variety of different times. So I have heard some of these stories, but I would like you to share a couple stories about the effect that this has for the families and the individuals

Daphne Johnston 13:15
you are great. You know, just like our volunteer training is not about brain science, we don’t have formalized marketing. We have signature stories, and that’s what I tell our ministries. I want you to tell the stories that will resonate with people, not some marketing bullet point, ideal thing, right? But our signature story is about a couple named Jack and Mary. Jack was about six foot two chemical engineer over a chemical incinerator. The army had North Alabama, where I’m from. He had Parkinson’s and Alzheimer’s. And, you know, I was young, I didn’t know what I was really doing when we started this ministry, and I didn’t know if we could keep him because he could not verbally communicate. He had Parkinson’s rigidity, memory loss of Alzheimer’s, but he was in there, right? And his caregiver would not leave him. I did not know what to do with her. I kept saying, Mary, you need to and she’d said, No, I’m not going well. I just let her stay. And what I learned was we didn’t need a hard, fast rule on caregivers, because, you know what? She was starved for attention, just like Jack was. She needed to be with us at that very moment in the beginning. But anyway, two weeks later, I had a volunteer, unbeknownst to me, take Mary out in the hall, say, Mary, we’ve got this. My mom had all summers. My dad had Park and said, We can do this. You need to go. And so Mary comes back into the room. We had about 10 volunteers, still three participants, and we’re all doing our stuff. And Mary comes in and she says, Jack, Jack, I love you so much. I love you so much, and I’m not deserting you. I’m not deserting you. I’ll be back at two o’clock. I love you so much. We were all watching in slow motion light. Like, Oh my gosh. Do I love my husband this much? I don’t know what to do. I mean the wrong question. And it’s just, you know, probable and Mary is I’m coming back at two. I’m coming back. I’m coming back. I’m not leaving you Jack. And this big six foot two fella turns around, and he looks right at her, and he says, Good BA, and we all just die laughing. And you see, in that very moment, we recognized he was the one that needed a break from her. And so oftentimes, in our ministries and our efforts that we do for caregivers, we’re directing it all toward them, but what we don’t recognize is the person living with the disease. They really need a break from that strung out care partner. They need a break from somebody that’s changing the sheets every morning, doing the bills for two, doing the doctor’s appointments for two, handling adult children that still have crazy things happen in their lives. We are not made to be together. 24/7, right? And we recognized, this is a ministry for both of them, right? He has a place of belonging. Now. Mary came back at two that afternoon. It was a two fold story, and I said, Oh, what did you do? Did you go to lunch? Did you go with girls? Did you go shopping? She just laughed at me, and she wrapped me up in her ears, and she said, oh, dear one. I went home, took off my clothes, put on my bath robe, and I was alone with my thoughts for the first time in three years. See, I don’t have money to afford sitters. 24/7, it’s your church. It’s you. It’s these volunteers that have afforded me a chance to be alone with my thoughts. And it was a gift. And I think we take for granted sometimes just space to have time to think, right? It was just a turning point for me. Trivial was shopping and lunch, but to be by ourselves, it was amazing. So they’re our signature story. They were amazing. And when I can share with directors how to tell that story to reluctant caregivers who don’t want to bring their person out, right, right? Can we get somebody in Squam, Washington to recognize Aha, did you ever consider that bill might need a break from you sue. Give us a try. That’s how we can build up our participants. We have great efforts in all the senior organizations that we do, but when you get off to a slow start, it’s hard to keep the momentum going. And so I feel like in our training method that we teach directors these stories so people can hang on to it. Yeah,

Rev. Beth Long-Higgins 17:36
And that, I’ve heard you tell that story multiple times, and every time I get a little teary eyed and and in part of it are very people we know, yeah, we can relate to that. You know, all of us were, most of us were in our homes with our spouses, our family members, 24/7, for long periods of time. And yeah,

Daphne Johnston 17:58
really highlighted that we all do so.

Rev. Beth Long-Higgins 18:00
So when I could have actually time in the house by myself, who was like, oh,

Daphne Johnston 18:08
is just such a blessing. And I think until we’re trapped is not the right word, but until we’re with somebody just non stop, yeah, it, it won’t sink in, right? I got to share our second signature story. It is just as powerful as Jack and Mary. The second signature story is of a little lady that was driving with dementia, and I didn’t know what to do, because we had never had a drive by, and she came in and overalls and a big straw hat and a green tip till just like my granny in South Mississippi had, and she was a character. She was a little Roly Poly and wide open, right? So she comes in and spends the day with us. And one of the things I love to highlight to visitors when they come to our ministries is our name tags, because we’ve got 50 to 400 name tags hanging on the door because so many people are involved in our ministries. She took her name tag off at the end of the day, took it off, slammed it on the table, and we all looked at her, and she said, Damn, this is just better than AA. Now we thought, what? And we all just froze. And I said, What are you talking about? Lady, you just said nobody cares what my last name is, and you’re all just meeting us where we are. I get choked up when I tell that story for the 1,000th time, where in our ministries do we care what somebody’s last name is, and where are we just meeting people where they are, right? This is not a program. I use it interchangeably. This is a ministry that the lady felt that day. I don’t even know her name. She never came back, but she gave us the vision of why we do what we do, right? Needing people where they are, especially living with men too.

Rev. Beth Long-Higgins 19:55
Yeah, absolutely, absolutely. And you’re right, those towers. Stories are more powerful than telling any of the marketing bullet

Daphne Johnston 20:03
points, right? No, I heard a lady in New York at a conference one time. She said she stood, I gave my whole pitch, and you know, it was one of the first times I had spoken to a big ballroom, and she was way back at the room, and this was like senior services that we’re never going to be able to do respite. And she stood up, and she was just really crying. She had tears just streaming down her face, and she said, I might not be able to do what you’re doing, but I needed to hear the story today. I needed to hear that this could happen, and I tell that all the time, because you might not be able to start a pure respite ministry like what I’m talking about. But any of you that are listening to this are trying to bring good to the world, and you need to hear a story of success, and you need to know how. You need to hear how God’s love can replicate, right? Yeah,

Rev. Beth Long-Higgins 20:52
absolutely. So there’s three things right that that you need to start up this ministry, three

Daphne Johnston 20:59
things very basic, highly suggest you get a host church, because you’re going to have free space to operate, so you can afford to have that slow start of participants, because you got free space, right? Free space to operate. Got a huge pool of volunteers ready made. You don’t have to go to the market, because if you get the clergy on board, they can cast vision from the pulpit. We teach people how to do that, and you get this congregation galvanized to do something new, right? It’s hard to do something new besides music and kiddos in ministry for 15 years. And to do something new is brave and it’s hard, but you get galvanized in that host church. You need a meal source, because we love to have a hot lunch. Volunteers and participants, we were all mixed in there together, because oftentimes we overlook the blessing of a shared meal. These families often eat on the fly. It’s not nutritious, it’s not warm, and when’s the last time you thought of a shared meal with friends is your biggest blessing, I guarantee, and these families do. So you need a meal source, and then Third of all, you need that part time director to help you get going. And we have got a formula that’s going to help you add water and stir. We have got everything laid out that, if you’ll just put a people person in front of us, we will teach them how to do this ministry,

Rev. Beth Long-Higgins 22:23
and not every RFA program is exactly the same, right? Yes,

Daphne Johnston 22:28
That’s right. Thank you for pointing that out. So there’s something in the church world called Stephen ministry, and we love Stephen ministry. It goes for all denominations, and it’s got a model of how to care for congregations, maybe through counseling, and we use that as our model, because we want this to be in our denomination. We’ve now got, I think, 15 denominations started. What we recognized was that all church leadership is different. You know, it might be in the trustees, it might be in the vestries, it might be in the senior pastor, it might be in a vision team, I don’t know, but we give you this model of how to grow this ministry, and we want you to do what applies to your community. These are 15 years, almost, of best practices that we know work, but we don’t want to shove anything down your throat. So we give you best practices on how to collect tuition, how to give scholarships, how to work with the church finance office, and how to get community partners. We’ve got a model that offers a lot of different choices.

Rev. Beth Long-Higgins 23:30
So tell me about tuition.

Daphne Johnston 23:33
Tuition, people oftentimes don’t partner ministry with tuition. Let me tell you. I need mom’s morning out. I think we all have a little bit of tuition, right, and that goes to paying for quality art supplies, quality supplies, food and a quality part time director, because we want this person to take it seriously. But we never turn anybody away. We charge anywhere from $20 to $40 to $50 a day for four hours. We train those directors how to say, this is $10 an hour for the best medicine of Alzheimer’s you’re ever going to get is better than anything found in a bottle of any long term study. Because we say that respite is an immediate response to dementia. You’re immediately going to walk in the door and your life will be changed, right? But we show directors how to say $10 an hour, but then we also show them how to say, if your mother comes in and has no income or something’s happened and it’s low income, we turn nobody away. We don’t dive into people’s finances. We just say, do you know what? We’ve been blessed. Come on, we’ll make space so we show people how to have a balance but the tuition really does help offset the cost, and that’s what makes it attractive for churches to start.

Rev. Beth Long-Higgins 24:50
Yeah. So if my church decided to do this, how long would it realistically take to get it up and going? How

Daphne Johnston 24:59
long. Would it realistically take? I think that the fastest we’ve ever had one get up and go is six months and probably to two years. Okay, so the key is, if you can identify your space, and if you can identify your part time director, early on, we will share with you that hiring a director usually happens two to three months out before the start pay so the community champion. If you’ve just got maybe a caregiver in your church that’s been affected by this disease, they typically can become a champion. They have lived this life, and they want to see and they want to help other people, maybe a daughter or a son that wants to do it in honor of the memory of a parent, right? Six months to two years? But if you can get that director identified, it’ll go a lot quicker, and

Rev. Beth Long-Higgins 25:51
the foundation has grown, yes.

Daphne Johnston 25:54
So the respite for all foundations started in 2018 and like I said earlier, with the help of my co-founder, Warren Barrow, but now we have gotten some national grants that go through our foundation, so we can give seed grants. So for instance, I think we’ll, we’ll get over $120,000 this year to give to about 12 to 15 churches, 10, $10,000 seed grants. And our thought behind that is, if a Community Church can come up with 15 or 20, we give you 10, well then you’ve got the salary of the part time director, and that’s really your only biggest cost for that first year. And then your tuition is going to kick in after that first year, and you’ll kind of even out those IRC grants with no strings attached. We’ve got a great application process. If you fill this thing out, you will have a business slash ministry plan. You know, oftentimes in the church world, I think people get scared when they hear the word business plan, right? But it’s really just a series of questions of, how are you going to execute? Who’s going to pay for utilities? Who’s paying for the director? How are you going to get your food? You know what liability first, supplies we go through in our training. How? Because this is a social model of care. You’re listening to this and you think you want to start, I want you to tell your minister, this is a social model of care. We’re never going to pass medicine. We’re never going to give medical care. This is a ministry that combats isolation and loneliness, right? To me, it’s no different than a ministry in fellowship hall. Okay, we’re keeping up with our friends, but because it’s a social ministry, it typically falls under the umbrella of church insurance. Okay? Our liability is very easy, and we’ve got a lot of steps and resources to help any church through that process.

Rev. Beth Long-Higgins 27:51
And the other thing that I know in conversation with you is the impact this has on the volunteers themselves, right, right?

Daphne Johnston 27:59
We were so fortunate, because the senior pastor that helped me get this going, who commissioned me to do this, is now my partner and a retired bishop, and he’s helping me spread it all over the country. He just did a research project on our 10 year volunteers. Also a ministry that has no attrition. Once you get people in this ministry, they are hooked, and they never fall away. They never fall away. They did. He and Dr John Bell, another volunteer of mine, researched our 10 year volunteers, and they came up with concepts that this is a disciple making opportunity, right? This is not a babysitting service. This is a chance to put all those baby boomers in your church, to put them to work, and they don’t have to volunteer 52 Tuesdays a year. That’s what gets them in there. They can be in a transformational ministry and come when they can join this volunteer pool of people that are the pool is what makes the difference. That’s what gives us our flexibility, but what they recognize is that it’s changed their lives. I remember one fellow said, you know, I’ve done Bible studies all my life, but until I did respite, I was not living the word of Jesus Christ, right? I was not in the mission field. I could study all I wanted, but I was really given the opportunity to help my neighbor, as I know Jesus would have. So it’s a neat way to look at it when you see our friends living with dementia as someone that is teaching us again, it’s just different than a babysitting service, right?

Rev. Beth Long-Higgins 29:38
Right? Yes, you’re honoring the fact that this individual, regardless of a diagnosis, regardless of physical things that are happening in the brain, they’re still Child of God, they still have value to contribute to the world, and you’re able to respect them. Them. We had one of our communities some years ago, a resident who came in, I think she moved directly into a memory care neighborhood, and the chaplain, you know, went to meet her soon after she arrived. And this woman did not want to speak with the chapel. I mean, she was obviously pushing and like, going away. So she, the chaplain, had the opportunity to meet with the daughter who came in to visit her shortly thereafter. And the daughter said, Do you have some time? I need to tell you what’s going on? And the daughter shared that she had moved back to the hometown once her mother had this diagnosis to care for her mom as long as she could, and that included, then, you know, going to the church that her mother had been a member of for 30 to 40 years. One day, the pastor called the daughter and said, I need to request that you not bring your mother back to church. And the daughter said, Excuse me? He said, Well, her behavior is just becoming too disruptive for everyone else in the congregation, and we’re afraid that, you know, if she were to get up and go to the bathroom, that she would get lost and wouldn’t be able to find her way back to the sanctuary. And so the woman was very upset by this. She had a hard time figuring out how to explain this to her mom, so they started going to another church, but her mom knew that wasn’t her church, and so by the time it got to the point that the daughter couldn’t care for her anymore, and they moved to the member chair neighborhood, the woman who was living with dementia, she was so angry with the church that she did and she knew enough to make to connect the dot that she did not even want to speak to the chaplain who was in the community. So the chaplain worked on that relationship, and over time, she did start to come to worship in the community. But I thought, how does a church tell this family who have been members for 30 to 40 years. No, you’re not. You’re not welcome

Daphne Johnston 32:07
here for you, yeah, yeah, yeah, not appropriate. We, you know, one of the things that we didn’t start this, but after that first year, we recognized that our families needed a dementia friendly service, and our church is a large cathedral. We’ve got respites in small country churches. We’ve got them in medium size, large, all different sizes, but we landed on doing our chapel service twice a month. And so when we operate from 10 to two, two Tuesdays a month, from 1: 30 to two, caregivers can come back in jeans and a sweatshirt and still take communion. And the hardest part of that service is getting a preacher down to eight minutes. We say, you can minutes. And, you know, that’s really one of the hardest things I’ve ever had to do, is get them to shut up. But those services are so powerful. You know, taking communion along someone alongside someone that might not remember their daughter or son, and yet they have their hands out for the body of Christ. And how, you know, how, as a church, do we deal with that? Do we create intentionality where we still have open arms for these families, right? Yeah,

Rev. Beth Long-Higgins 33:21
you know. And we know in our memory care neighborhoods, or individuals who are pretty non verbal, they’ve stopped speaking for whatever reason. And when they gather in community, and the chapel chaplain is leading a chapel service, or when they go to visit them in their room and they start the Lord’s Prayer, they say the Lord’s Prayer, or they start singing doxology or hymns that they’re familiar with. They start singing It’s protected

Daphne Johnston 33:46
in the brain for a reason. God does it. I’m telling you, we’re still a part of the collective body of Christ. I had a fellow that was living with Louis’ body, and he was still really with it, but had bad hallucinations. He had killed 2000 spiders every morning, kept his boots by his bed so he could kill the spiders. That’s how bad they were. And yet, our first chapel service, I’ll never forget, I just didn’t really know what I was doing. I knew we were going to do communion singing. And I walked out and into our little area, and I said, is anybody getting prayer requests? And so my hands went up. And so Ed raised his hand, and he said, boss, I need everybody to pray for my daughter. She’s written a lot of bad checks around town. We’ve got her three daughters under the age of 10 at my house, my wife is working full time. She’s had to, you know, go away. We’ve got these three little girls, and I need Joel’s prayers. And so everybody kind of got choked up, and Ed said, boss, I’ve had this disease for four years, and everybody has prayed for me. This is the first time I’ve been given a chance to ask for prayers for my family, where in the church. Are we creating space for people living with a challenge to still be in the collective body of Christ? It was so powerful, darn

Rev. Beth Long-Higgins 35:10
it. I don’t have Kleenex near me.

Daphne Johnston 35:15
It’s good stuff. It’s good stuff.

Rev. Beth Long-Higgins 35:16
Okay, well,

Daphne Johnston 35:18
it is. You want to not forget to tell you that we have got a respite for all. The documentary coming out is going to be roughly 30 minutes, not even for PBS. I want the whole country to see how easy this volunteer model is, and it’s really through the base of the church.

Rev. Beth Long-Higgins 35:35
And just to mention quickly that you’re going to be showing that at your annual training event, you have an annual training event that folks can come to. So the training is not just as you’re getting started, but you have ongoing opportunities for the directors to train the volunteers and for the directors and the volunteers annually to come in, and you do bring in rock stars to your annual training. I, as you, shared with me who some of those folks are. So in

Daphne Johnston 36:05
our ministry, it’s not typically the directors are not people with dementia background. There are a bunch of do gooders that are retired, that are really ready to give back to their community. We can learn Alzheimer’s and we can, we can learn a lot of new skills, but we need a people person, right? And so our training is set up for us to have director calls once a month to train people on community partnerships, to train people on troubleshooting, dementia communication, dementia education. And then we have an annual training where volunteers, not just the director, but we’ll have 200 people that are training, and these are lead volunteers that want to learn more, right? We’re alive for something. We want to grow in it, and we want to learn more.

Rev. Beth Long-Higgins 36:48
I always love talking with you, Daphne, and you know that I have several ideas of folks I want to make sure to tell about our RFA, because I think they would be prime locations and congregations Cora

Daphne Johnston 37:01
and well, we’ve got our first outside of Columbus, in Scioto ridge. I looked it up at a United Methodist, and so we’ve got one in Ohio. If anybody is listening, I know this is nationwide, but we do have many on our website. You can look at our locations, and our goal is to get one in each state so people can drive to that location and really catch the spirit of what we do.

Rev. Beth Long-Higgins 37:22
Great. So one thing that we do as we come to the end of our podcast is we ask all of our guests three questions, and we’ve primed you so you’ve had a couple days to think about this. So the first question is, when you think about how you have aged, what do you think has changed about you or grown with you that you really like about yourself? I

Daphne Johnston 37:48
I think as I have aged, it’s letting go of all the small things that used to worry us and now is the freedom of being in your 40s. And I’ve been around people in their 80s and 90s all of my life. But I remember the first time in my retirement community asking, what age, what decade would you go back to? And I remember this lady saying, I wanna go back to my 40s. Everybody else went back to teens and early 20s. And I said, why your 40s? She said, Because you’re a little more financially free. Your kids are moving on, but you’ve really let go of the baggage. Worry about yourself. I think in aging, we can let go of a lot of baggage.

Rev. Beth Long-Higgins 38:31
Yeah, nice, nice question number two, what has surprised you most about you as you have aged,

Daphne Johnston 38:44
What surprised me most, I think, is the capacity that God gives us on a daily basis. If you would have asked me 10 years ago, hey, Daph, are you going to start a national movement that goes into 15 states and 15 denominations and affects 1000s of people and 250,000 hours of volunteer time, and just one year alone, no, oh, my goodness, no, with a big capital N, O, right, that is many of the people listening to this podcast. And anybody in ministry knows that when you just take a moment to look back. You think, how in the world did I do that? You know that God put that spirit in you, and you know he was growing capability and capacity that you never could dream of.

Rev. Beth Long-Higgins 39:31
Excellent. Thanks. I suspect that this next last question is difficult for you, because we ask you, is there one person that you’ve met or who’s been in your life who has set a good example for you in aging, someone that inspires you to age abundantly?

Daphne Johnston 39:49
I think that’s going to have to be my mother, and that’s probably the answer of many but I started this ministry almost 13 years ago now, and nobody in my family had. Dementia, Alzheimer’s, or anything like that. Now I’ve got multiple family members, as we all will as we age, but she is still one of the best volunteers at my respite ministry. She gets up and goes twice a week, and it’s beautiful, because in this space of respite, she, living with vascular dementia, is still one of the best volunteers I have with people who cannot verbally communicate, and her patients, and the way she is handling her memory challenges. She stood up at a respite one day last week when the volunteers told me and said, You know, I’m taking medicine to help my memory. It’s okay. It’s okay. We’re not perfect, and I think it’s just her positivity has always just affected me, and I really didn’t know how much, and until these last few years,

Rev. Beth Long-Higgins 40:44
wow. Thank you. Thank you. So before we close, how can people find you? So

Daphne Johnston 40:51
if people will look on the web for respite, R, E, s, p, i, Tee. You know, before I took this job, I didn’t even know what the word respite meant. It means to take a break from something hard, right? And we all need a space in our lives where we can take a break from something hard. But look up respite, F, O, R, A, L, l.r.org, respite for all.org and you’ll see just a host of three to five minute videos that you can share with your church family, anyone in your community. You’ll see our locations, you’ll see our theology, you’ll see our mindset. We think that website is a wonderful resource,

Rev. Beth Long-Higgins 41:31
great and that’s how they could also connect with you personally through the website.

Daphne Johnston 41:36
Yes, there will be a contact page. We’ve got a resource director. I think my email is listed there, but now we’ve got staff that are handling onboarding of new communities and vision teams. What I strongly recommend, if you hear this and you’re vaguely interested, order my book off Amazon, reclaiming joy together. Daphne Johnston, you can read that. Get some good ideas. There’s a one two step guide in the back of how to start a respite ministry. I wanted to just lay it all out there so you could see how easy it was before you start this process. And then we can get your vision team. I just met 25 people in Delaware a couple of weeks ago. It can be three people and 25 but I’ll get on a zoom call, just like this, and we’ll go through the slides of finances, of recruiting and what all will happen. There’s just so many resources.

Rev. Beth Long-Higgins 42:26
Great. Thank you. Thank you Daphne, and thank you to our listeners for listening to this episode of The Art of aging podcast, part of the abundant aging podcast series of United Church homes. And we want to hear from you what’s changed about you as you’ve aged, that you love, what has surprised you most? How do you define abundant aging, and who is your abundant aging influencer or hero? You can join us at abundantagingpodcast.com to share your ideas. You can also give us feedback when you visit the Ruth Ross Parker Center website at UnitedChurchHomes.org. Thank you. Daphne. I just love spending time and being in conversation with you and just Blessings to you as you keep bringing on new organizations in these coming months. Thank you

Daphne Johnston 43:19
so much for having me and just the opportunity and keeping the whole country together, right? I mean, churches need each other. We are the body. So thank you for spreading the ideas. Thank you.