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Navigating dementia: A guide for loved ones

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Loneliness, grief, anger, exhaustion and a longing for peace. Healthcare chaplain, former United Methodist pastor and author Elizabeth Shulman says these emotions frequently surround families dealing with dementia. In her new book, "'Finding Sanctuary in the Midst of Alzheimer's: A Spiritual Guide for Families Facing Dementia," Shulman offers steps for how caregivers, as well as members of the church community, can find and offer support for one another.

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This episode posted on June 24, 2022.

Transcript

Prologue

Crystal Caviness, host: Loneliness, grief, anger, exhaustion and a longing for peace. former United Methodist pastor and author Elizabeth Shulman says these emotions frequently surround families dealing with dementia. On today’s Get Your Spirit in Shape episode Elizabeth offers steps for how caregivers as well as members of the church community can find and offer support for one another.

The conversation

Crystal: Welcome, Elizabeth, to "Get Your Spirit in Shape."

Elizabeth:Thank you. It’s nice to be here.

Crystal: Today, we are going to talk about a topic that’s really affecting more and more families. And I’m happy that we can share, I believe, tangible ideas to help families that are dealing with either caregiving for a family member with Alzheimer’s or another brain disease or even those of us in the church who may not have family members, but we have friends and definitely members of our church who are. So, we’re going to talk about that today. But before we do, can you share just a little bit about yourself with our audience?

Elizabeth: I was born and raised near Cleveland, Ohio and was called to ministry when I went through confirmation at my Methodist Church. And then went on and became a pastor in the East Ohio Conference, but moved to the Holstein Conference and lived in Tennessee for many years. I miss it. My daughter lives in Nashville now and I love going to visit her. But I…I went from church work into chaplaincy because I really love healthcare. And I was then hired at a large nursing facility—a 600-bed nursing facility, and really started relating to the family members that were coming into the memory care units. And at that time my husband was diagnosed with paranoid schizophrenia. And I was seeing so much of his behavior, even though schizophrenia is a mental illness and Alzheimer’s is brain disease, there were so many similarities. And so I turned to my church and they didn’t know how to help. And so I went back to school. I went back to seminary. And the topic of my dissertation was “The Experience of Marriage for Spouses of Alzheimer’s Patients. And I did that to help develop a ministry for churches and senior centers and community groups to minister to caregivers because that was just missing, I think. A lot of…. It wasn’t from doing my interviews that church members and pastors didn’t want to help. They just didn’t know how. So I took personal stories from the caregivers and I coupled that with Scripture and wrote "Finding Sanctuary in the Midst of Alzheimer's" as a way to help churches provide better care for caregivers and for caregivers to receive some spiritual support in the journey.

Crystal:  I appreciate that you said you turned to your church but they didn’t really know how to help. I think sometimes that we do feel helpless. We don’t know what to do. And I appreciate that in your book there’s some real tangible ways that congregations can help. In your book…the subtitle of "A Sanctuary in the Midst of Alzheimer’s" is "A Spiritual Guide for Families Facing Dementia." But this book is for all of us. And I appreciated that whether you’re caring for a parent or family member or you’re caring for a spouse, or you’re just inside the church, this book can be…can be a way to kind of help navigate those spaces. Tell me about how that…kind of that holistic approach to your book came about.

Elizabeth:  Well, initially it had come about when my first version of my book was just written for spouses because that was my experience. But then I heard from readers saying, ‘Yeah, but what about the family members?’ And so I went back and interviewed more people and got the perspective of, you know, kids caring for a parent and then incorporated that into, and each section addresses challenges that are very common and yet the personal stories show the unique perspective. But I think other people often see themselves in other people’s stories. And it was very important for me to provide readers and participants with a sense of hope. So a Scripture that reminds us of who we are and the hope that God provides, and then also, you know, a big piece of the book is for friends of caregivers, helping them identify what gifts they have that couple with the needs from their fellow congregants or just, you know, friends, and then bringing those together so that when people are helping out they’re doing so in a way that is not only helpful to the caregivers, but is meaningful to them. They really feel like they are providing support because they’re using gifts that they would love to share.

Crystal:  One of the stories that you shared was a friend who came by to bring…I think they dropped off maybe cookies or something and said, ‘Hey, can I just sit with your parent while you run some errands?’ And I was thinking about how that’s just such a really simple offer and how that’s something that all of us can do. We don’t need special training. We don’t need special…you know, really anything, just a giving spirit, honestly. Is that…I think that part of that helplessness that we might find sometimes is that we’re not quite sure. We think we need some kind of education or we need some kind of medical expertise. And what have you found as far as just kind of opening up that access (if you will) for other people to say it’s okay; it’s okay to come in and just be who you are.

Elizabeth:  Right. Well, a lot of times really the burden begins with the caregiver and feeling comfortable asking for help because that’s so hard. So I incorporated that in the program to help people feel more confident because people really do want to help. They really do. And so to trust that and to identify specific needs. And a lot of times our specific needs… You’re right. They’re not medical or they don’t need an expertise. I had one gentleman who said, ‘You know what would make a big difference? As if someone could just come and wash my wife’s hair. I’ve never washed a woman’s hair and that would be a huge help.’ And people were bending over backwards. I can come wash hair. You know, there’s so many daily tasks that we take for granted. But then when a loved one is not able to perform them and suddenly we’re put in the position to do those things that may be completely normal, but yet maybe not very normal for that person to ask for help. People will step up and minister to you.

Crystal: So really it sounds like it starts at a place of the caregivers being vulnerable enough to ask.

Elizabeth: Um hum. That’s why I think finding specific things they need help with. It think it makes it a little bit easier to ask. You know, a lot of times caregivers don’t know…. Well, a common thing they do know that they want is time. So you know, the example of ‘can I just come sit with your loved one for an hour? Can I take them for a walk?’ Yes. Now I can go take a shower. Or I can get these dishes washed or I can vacuum. It makes my loved one agitated.’ So you know, the gift of time and just presence. And you don’t have to know specific things. You just can be yourself and provide a friendly face.

Crystal: Elizabeth in the book you had a couple of people who endorsed the book who said that congregations are uniquely positioned to offer support for people with dementia and their families. Why is that true?

Elizabeth: I think because of the message of the gospel. You know, we’re called to serve. But I think it’s also just a human…a human trait. But I do believe that, you know, as Christians we may not just see what we’re able to do as skills, but that they’re God-given gifts. And so that is why with this program of ministry you know the end result is to come up with a program of ministry for caregivers. But it’s unique to each church because each congregation has different needs and made up of different individuals with their own unique gifts. So utilizing those in one congregation may come up with a ministry that’s very different in a different congregation just because their needs are different and the people with the gifts to share are different.

Crystal:  As you did the research for this book, what surprised you the most?

Elizabeth:   Hmm. Oh, gosh. There were lots of surprises. I think one of the things that surprised me was… We’ve already mentioned it. It was the hesitancy to ask for help. But what surprised me, I think, more so is the degree to which caregivers will allow a situation to just get so burdensome before asking for help. So it’s not just that they’re hesitant to ask for help. It’s that they allow life to get so stressful, and they’re carrying so much of a burden before they ask for help. And I think if caregivers are able to ask for help earlier, you know, it just sustains them for a longer period of time. And they can care for them, perhaps…. You know, a lot of caregivers might be able to keep their loved one at home, if they’re able to establish a caregiving routine with friends who can provide support, that enables them to keep a loved one at home longer.

Crystal:  You talk really candidly about all the emotions that are involved—the loneliness, the grief, the anger, the exhaustion. But then there’s … your desire, as you said earlier, is for…to help the caregivers find peace. What does that path look like? I know it would look different for everybody, but I would think if you’re in the middle of exhaustion and grief and loneliness, that peace seems very elusive.

Elizabeth: I think it’s really important for caregivers to begin with being honest, primarily with themselves. No caregiving situation is the same. And yet there are common threads. But people try to cover up things. They try to, you know, minimize. And I think being honest with ourselves can really, you know…Jesus said, ‘The truth will set you free.’ You know, if you feel resentful because your father was maybe abusive or family dynamics were such that it wasn’t a picture perfect family even if it looks that way on the outside. You don’t have to necessarily share that with people. It would be great if you can find trusted people. But if you can just be honest with yourself. You know, I don’t want care for my father because he was abusive. And I feel like God is able to provide relief and opportunities for help when we first can acknowledge to ourselves how we really feel about something. And the good feelings are often easy to acknowledge. But difficult feelings are not as easy. And yet those emotions can point us in the direction of where we need help, if we honor them.

Crystal: And sadly there’s still some stigma, isn’t there? Can you talk about that?

Elizabeth:  One of the gentlemen that I interviewed was a pastor and he and his wife had been married for 50 years. And he was up preaching one day and his wife, who had always sat in the front row, prim and proper, started talking like a sailor and he was mortified. And they immediately went…she ended up being diagnosed with Alzheimer's and I think partly because, you know, she kind of outed herself. But they chose to then be very honest with the congregation. And because of that people were able to help and, you know, they would start sitting with his wife or they would take her for a walk during so that she could still come to church. But a lot of times people…others recognize that something’s going on, but no one talks about it, or they talk around it. But I talked to…. One of the narratives in the book is from him and he said, “We just talked about it. We wanted everyone to know.” And it really….. It helps the congregation because then no one was like, Oh, what’s going on? You know, it was…it was out in the open so people knew to step up and they knew what was going on.

Crystal: It sounds that…this place of secrecy and this place of being alone is just…it’s not good for anybody obviously. How do you take those first steps?

Elizabeth: Well, having trusted pastors and close friends that you can share with. Another good first step, I think, is if you suspect or whether you’re already knee-deep in caregiving, there are so many online support groups available. And you can join and you don’t have to participate. You can read what other people are encountering and then dip your toe in and ask a question. I have found online support groups to be tremendous for support. And it’s a way to kind of…once you feel comfortable and more of an anonymous community, then you know you get used to some of the struggles, you realize you’re not alone and that actually so many people are encountering these challenges with caregiving, that you’re more able then to reach out.

Crystal:  Elizabeth, you said you were a caregiver for many years yourself. What helped you the most?

Elizabeth: What helped me the most was remembering my value. For a period of time I lost myself to caregiving. And you know, it was 8 years of erratic behavior and having my husband stay compliant with his medication, going off his medication, going on. Finally you know, our children…. We had 4 daughters and they were afraid of him. And I was secretive. For probably 2 or 3 years I didn’t tell anyone. And I was going through my chaplain residency. And I had believed that it was my husband’s story to tell. So I was going to respect that. And then when I was going through my chaplain residency my supervisor said, ‘Yes, but Elizabeth, your story is that you are married to someone with schizophrenia. You have a story that is yours. And that provided me such a sense of relief. And then I was able to tell my family and close friends, who, ironically, had suspected something was going on for a long time. So I think honoring our own feelings and what we’re experiencing is really important because we’re the only person we have complete control over. 

Crystal: In sharing that it sounds like what evolved was this community around you, a community of support.

Elizabeth: Yes. Yes. And you know, with 4 kids that was very helpful. 

Crystal: So building the community, really…regardless of the kind of caregiving you’re doing, having a trusted community is just so important.

Elizabeth:  Yes. Yeah.

Crystal:   And I really love, as I said earlier, that the church, your local congregation where maybe you and your family member had been for years, can provide that loving community and that loving support. And the book addresses how that can happen. So, yeah, that is…I just really appreciated that you started with the book and it can almost be a how-to guide.

Elizabeth:  Um hum. Yeah. And that’s the idea. I’m working on a new book which is for individuals. It’s a workbook to kind of work through on your own. But the message is more of a…was written for groups, although individuals can use it. But yeah, a how-to guide would be a good way to describe it.

Crystal:  You had a question. It’s toward the end of the book. And you said when maybe going into meet with someone or to visit with someone with Alzheimer's or dementia that you…a way to take the pressure off or maybe remove some of the fear or the uncomfortableness is you ask yourself ‘what can this person teach me about myself?’ That question struck me as unusual, just to be honest. I’d love for you to talk more about that.

Elizabeth: Okay. Yeah. Again, that was another thing that we learned in chaplain residency is to ask, because so often we want to help. We don’t know how to help. Then we kind of become stressed over, well, I don’t want to…I hope I don’t say the wrong thing or well, this person has dementia and I’ve never really interacted with a person like that. What happens if they’re, you know…. So, to stop and ask yourself, ‘What is this person going teach me about me?’ helps you to be just more present for the encounter with the other person. Can’t remember… Thomas Merton may have said it allows the Christ in me to see the Christ in them without trying to solve anything because a lot of times, especially with people with Alzheimer’s, it’s a condition that’s not going to be solved, at least not yet. So, to just be present and to be willing to learn from that person and acknowledge the way things make you feel. I think it just really opens you up to becoming more present and more loving and more compassionate and self-forgiving. You know. You worry you don’t say the right thing. You know, it’s okay. Wherever 2 or 3 are gathered God is present. I’m just going to be here. And it takes the pressure off a little

Crystal:  And I think that another part of that was, if I’m recalling correctly, was about your expectations—managing your expectations. I would think that if you’ve had a relationship with someone that is now suffering from Alzheimer’s, you know, that relationship…your expectation of what that relationship is is going to change, or perhaps should change.

Elizabeth: Right. Right. It’ll be different. You know, the whole idea of the new normal. But if your expectations are just to continue to have a warm friendship, then that’s nice and general. You know. You can’t expect them to play bridge, maybe, as they did for years and years. But expecting to, you know, just be present.

Crystal: I have just a couple of more questions for you. Is there anything you wanted to share today that we haven’t yet had a chance to talk about?

Elizabeth: I just had an article come out in the Health Progress. It’s the Catholic Health Association. And I got a lot of feedback from readers about how I address the idea of ‘should,’ and how a lot of times we’re disappointed because we…. And this ties in with the expectations—thinking something should be different. And yet God is all-knowing, all-loving. And so if something should be different, I believe that it would be. And if it’s not, then it’s exactly as it is to be right now. And so to be okay with that can really change our perspective going into a challenging situation. If we automatically assume something that we don’t want to happen is because it shouldn’t be that way, then we’re not dealing with reality because the fact is, it is. So, you can just take a breath and go, ‘Here it is.’ And go from a place of whether or not it should be or shouldn’t be, it is. And I don’t know if that makes any sense, but I feel like just allowing things to be the way they are in the moment is more peaceful and helps us tackle things in a way that might bring about new ideas. It opens us up for God to present solutions that we might otherwise not think of.

Crystal: Oh, that makes sense. And the other is about us trying to control the situation and maybe fix the situation, a situation that we have no power to fix.

Elizabeth:  Right. Right. And solutions will come because I believe God is all about hope. But allowing God to provide the inspiration rather than get stuck in the circle of ‘I can’t do this; I can’t do this. It shouldn’t be this way.’ Just wait and see what God has to show for us.

Crystal: I like that. The last question I have for you is a question we ask all of our guests on "Get Your Spirit in Shape": How do you keep your own spirit in shape?

Elizabeth: I swim every single day unless, you know, I’m out of town. I discovered swimming in my 50s. And there’s something about…. And I have a tether. So I tie myself…. I have this belt that I attach to the side of the pool. So I don’t go anywhere. And I close my eyes and I swim for an hour. And there’s something about just being immersed in the water, I just love it. Who knew I could love any form of exercise. But this one I do. And so that’s how I feed my spirit every day.

Crystal: Oh, I love that. That sounds so relaxing and so peaceful.

Elizabeth: It is.

Crystal:  Elizabeth, thank you for being a guest with us today. On our episode page we will list where our audience can find the book, any other links,maybe to the article you referenced or the online support groups, anything that might be of help.

Elizabeth: On my website I have links to all kinds of resources.

Crystal: We’ll definitely have that on our episode page. I just appreciate you, your ministry. That’s important to so many people, so many families right now, and to all of us as we try and navigate these unknown waters. So thank you for being with us.

Elizabeth: Thank you so much. I really enjoyed talking with you.

Epilogue

Crystal:  That was Elizabeth Shulman, author of "Finding Sanctuary in the Midst of Alzheimer’s: A Spiritual Guide for Families Facing Dementia." To learn more about Elizabeth, her new book and her ministry, go to UMC.org/podcast and look for this episode. In addition to the helpful links and a transcript of our conversation you’ll find my email address so you can talk with me about Get Your Spirit in Shape. Thank you so much for joining us for today’s episode of Get Your Spirit in Shape. I look forward to the next time that we’re together. I’m Crystal Caviness.