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The spiritual life is an essential part of our human experience. But suffering from dementia can make going to church a difficult and confusing experience.

So how can you help your loved one continue in their faith during periods of cognitive decline?

In this episode, we discuss why it’s important to let others know about your loved one’s diagnosis and how to stay connected to the faith community even when suffering from dementia. 

Here Are The Show Highlights:

  • How to find God in your loved one’s dementia experience (5:36)
  • Why unknowingly churches harm those with dementia and how those relationships can be restored (7:55)
  • How to endure that dementia doesn’t cost your loved one their church connections (8:59)
  • Why musical worship can provide a powerful spiritual experience for dementia sufferers (11:59)
  • 4 ways to support the faith practice of dementia patients and enrich their lives (16:26)
  • Why telling people to call if they need anything is unhelpful (and how to provide support instead) what you can do instead to provide needed support (23:44)

For daily 5-minute mind exercises, head over and like my Facebook page: https://www.facebook.com/hcafortworth/

You can also find additional support and resources by calling Home Care Assistance at 817-349-7599 or visit our websites https://www.homecareassistancefortworth.com/ and https://itsmyturntocare.com/

Read Full Transcript

Welcome to “It’s My Turn To Care.” We know the challenges you face caring for someone with dementia. That's why each week we bring you tips, strategies, and most of all, support, as you navigate your role as caregiver. Let's get started. [00:15.6]

Dave: Hello, this is Dave parks. I'm a certified senior advisor and the host of It’s My Turn To Care: Secrets for the Dementia Caregiver. What we try to do in our podcast each week is give you some tips, strategies, things to think about, as we help you maneuver through your journey of caring for a loved one with dementia. Today we have two very special guests, Linda Abel and Gail Snider.

Linda is a registered nurse. She's retired and currently serves as the president of the board of Dementia Friendly Fort Worth. She's an active member of First United Methodist Church of Fort Worth and helped with the development of its dementia ministry that culminated in the founding of Dementia Friendly Fort Worth. [01:07.3]

She and her husband, Jim, live in a senior living community, and from there, she records the Dementia Friendly Chapel Services that are broadcast by the church on Sunday afternoon and Wednesday mornings, and then made available for viewing on demand on the church's website, and on Facebook and YouTube.

Welcome, Linda, to the program.

Linda: Thank you. It's a pleasure to be with you today.

Dave: And we also have Gail Snider and Gail currently serves as the executive director for Dementia Friendly Fort Worth and was instrumental in launching this initiative, which is now reaching beyond the borders of Tarrant County. Gail is committed to helping families and the community navigate age-related decisions. She walked that 12-year journey with her mother-in-law who had dementia, and she has helpful insight into issues and services families desperately need. [02:00.8]

Gail has a passion to help the community understand dementia, and to help persons living with dementia and their care partners have better quality of life within the community. She understands that it's difficult for everyone to be experts in this area, but strives to be a resource and educator to improve knowledge.

Gail is a certified Dementia Live coach. She's a certified dementia care practitioner, and she also serves as the co-chair for the Tarrant Area Gerontological Society Faith Based Bridge and has been a part of that committee since September 2014, and actually this is Gail's second appearance on It's My Turn To Care.

Welcome back, Gail.

Linda: Dave, thank you for the opportunity to be here again.

Dave: I'm so excited to have you both because what we want to talk about today is faith and dementia, and how kind of folks with dementia can still worship. [03:04.2]

Particularly during this time of year, I wanted to talk about this because I just think it's so important, because we're so focused, understandably so, on kind of getting through our day, making sure that people are comfortable and we kind of get those tasks done, like going to the doctor, making sure we're eating right, maybe getting a little exercise, being comfortable, taking our medications, trying to socialize as much as possible, but it's so easy to forget about our worship and our faith.

I just wanted to kind of give our folks that are listening some things to maybe help them on that part of the journey because it's so critical to those in the faith community. Let's start with why are we even discussing dementia and faith, Linda or Gail? [04:05.2]

Linda: I'm glad you said what you did because faith is important to many, many people. There's a French theologian whose name I will butcher if I try to say it, but he wrote, “We are not human beings having a spiritual experience. We are spiritual beings having a human experience.” That says to me that we are all spiritual beings.

Now, some of us have a very firm grasp of our spirituality and it's a very important part of our life through our particular faith. That human experience that we have, that changes throughout our lives and so does our spiritual experience, but we are primarily spiritual beings, and so that's a real important part of who we are. The changes that we go through, and especially as dementia takes its toll, really can have an impact on our expression of our spirituality and through our faith in our faith practices. [05:05.8]

What you said is actually so true that we need to think about ways that we can continue to express our faith, even in the midst of dementia, both as the person who has the disease and the person who loves and cares for them. People often ask, Where is God in all of this? I mean, dementia is just such a devastating experience. Where is God in all of this? And my faith tells me that God is where he has always been, present and loving his children, and so that's an important thing for us to remember for the person who's loving the person with dementia to remember that God is still here.

But our experience is different and, unfortunately, sometimes our experience with our faith community changes some—I'll talk about that in just a moment—because sometimes what happens is that the church seems to forget the people who have dementia and their loved ones. When people feel they are forgotten by their faith community, they can also begin to feel like they are forgotten by God. [06:17.5]

We're offering ways to still express our faith. It’s really important. Sometimes people say, My wife and I loved, supported and participated in our church all our lives until dementia came, and now friends, sometimes family and even our pastor no longer come to see us. You can see how a person can begin to feel disconnected from their faith, and then that's why it's important for us to think about ways that we can continue to help them experience and live out their faith, as you mentioned. I think those are some of the reasons that we need to talk about this, get it out in the open and admit that it does happen. [07:02.5]

Dave: Yeah, I saw that actually a little bit with my own parents who both suffered from dementia and they were in a senior living community, a memory care, and so they can't go to church unless someone takes them. They can't interact with the church unless the church reaches out to them.

I will tell you that I would send a warning to those in the faith community that people watch how you interact with those that maybe don't darken the doors of the church and that can't darken the doors of the church, and maybe they don't have the means to give monetarily. People watch that and how you treat those people, and if you're not loving on them, reaching out to them and doing everything you can to minister to them, that sends a message I think to those that are watching. [08:04.6]

But, anyway, I love what you said. Go ahead, sorry.

Linda: I was just going to say let me just tag on one short thing and that is when we’ve got involved in this ministry at First United Methodist Church in downtown Fort Worth, it's a big church and it's very easy for people to drop out. They miss a Sunday here or there. Everybody misses a Sunday here or there and before it they've missed three or four Sundays in a row, and if I miss one of those Sundays, I don't know if you miss one of those Sundays, too, so it's easy to lose track of people.

The other thing that I think is so critical is that when there is a diagnosis of dementia, tell somebody. Tell someone at the church. I have had people in the church say to me, Can I talk to you? I don't want to tell anyone else. I can't really say to the pastor, Hey, did you know so-and-so has got a form of dementia now? I can't do that, and so it's important that when you are dealing with this disease, you need to let everybody and their brother know that can help support you, and especially your faith. [09:12.8]

Dave: Yeah, absolutely, because that's what the church is for, right? To lift up each other and to reach out for others, and that kind of thing. Talk a little bit about some ways that dementia affects people of faith.

Linda: One of the ways I already mentioned is that people begin to feel isolated and they feel alone, and they feel forgotten, and so that can really drag you down. That can add to the prospects of depression. It can add to the anger that often occurs when someone has some kind of dementia. The loved one can be very angry that this situation has occurred. Why me? Why my loved one? And angry at God. Those are things, if you feel forgotten, those can just really make that anger even more intense. That's one way. [10:05.2]

Then the other thing is that when you do not have the ways that you have had in the past of practicing your faith and expressing your faith, how do you maintain your faith? I mean, those things that we do, the spiritual disciplines as they're usually called, prayer, Bible study, worship the music of the church, those are all ways that we strengthen and express our faith, and if you don't have access to some of those, you become more withdrawn and inward-looking because I don't know how to express my faith anymore. If I lose verbal skills, how do I express my faith because I can't pray like I used to pray, I can't sing like I used to sing, and I can't follow a sermon [as] that's too many words?

Those are some of the things that can really affect us, and you feel abandoned and alone. I think those are probably the hardest things to deal with as it affects us in our faith. [11:10.8]

Dave: I know with my father, he suffered from dementia for about 10 years, and one thing I noticed, it was very clear that we would be doing an activity and then when the singing started, he really began to participate. We enjoyed singing when he was younger, but when the singing started in an activity, whether it be religious service or just an activity, then he really [participated]. Can you talk about that a little bit, because I know you’ve had--

Linda: That is such a common experience because music has such emotional attachments to it. I heard a Bishop of the church talk about this because his wife died dementia just a couple of years ago and one of the phrases that he used was that the heart remembers what the brain forgets, and we remember more of the things that have emotion attached to it, and more the music that we sing has a lot of emotion attached to it. [12:10.5]

Now, if a person is still trying to attend worship services in their faith community, trying to read in a hymnal can be very difficult. If we know the words, we can sing along, but if we can't read the hymnal, we get lost often after the first verse. That's the verse that most of us remember.

This is an opportunity for me to tell you a little bit about what we do in our dementia friendly chapel because we really draw on that wealth of memory of that music that was so important to us, and the way that we do that is through singing those old familiar hymns that we grew up singing and sang when we were young adults, and even into our middle age. We sang those songs and people know, for the most part, the first verse. [13:04.8]

When we sing in our chapel, we sing the first verse and then I may make a little brief comment or something, and then we sing the first far again, because we've just reminded you of it and now you get to join an even more fully. So, drawing on the music is really important and that's the most important thing we do in our Dementia Friendly Chapel Service. It’s to draw on that music. You're absolutely right about that.

Dave: It’s kind of interesting that, as you were talking, I was thinking, if someone said sing the first verse of Just As I Am, I wouldn't be able to do that, but if someone started playing the music, then I'd be able to do it.

Linda: Absolutely right.

Dave: It’s amazing, yeah. [13:53.2]

Linda: It is amazing. You can watch people join. When we were able to have our chapel services onsite in the chapel at the church, you could watch people. They could not really communicate with you very well when they came in and we greeted them. They really couldn't have a conversation with you, but you could watch their faces as they began to sing those old hymns and they don't miss a beat. They know it and that's such a wonderful experience.

Gail and I had the pleasure of being upfront and we could see their faces, and it's just amazing to watch them join in and sing all the words. It's really a joy to see that.

Dave: Oh, yeah, absolutely. If we're ministering, what can we do to minister to people who are suffering from dementia and, frankly, their care partners as well, those that are caring for them?

Linda: Okay, here are some things and, Gail, I am going to let you have a chance to talk, but I want to answer this and then you can add to it. [14:54.4]

I would say, the first thing that people outside that family that's dealing with the person with dementia, and their spouse, their son or daughter, or whoever is caring for them, I would say, the rest of us need to learn more about dementia. We need to understand more about it, so that we can be more understanding of the person and more patient, more gentle, more kind, all of those things.

The first thing I would say is learn about dementia in general, and then the second thing I would say is learn about what kind of dementia does this person have. If they've got a real diagnosis, learn a little bit about that particular kind of dementia because that can make a difference.

Dave: Sure.

Linda: The second thing that I would say that we all need to do is to love them and we need to find ways to express our love, which I’ll mention in just a moment. In the scripture, it says that this is how we know love. “Jesus laid down his life for us, and we ought to lay down our lives for our brothers and sisters. Little children, let's not love with words or speech, but with action and truth.” [16:01.7]

That's where we need to do a better job in learning to love them through what we do for them. Don't just say, I love you, Mom, and be out the door or that sort of thing, but what can we learn? I have four things that I want to mention.

One, be there. Your presence speaks louder than any words that you can say. Even when they don't know who you are, even when they forget that you came, while you are there with them, you are the very presence of God was skin on for them. As a family member, as the care partner, if you can set aside times that you are going to really focus on spirituality, it will be even more understood by your loved one that you are talking about, you are sharing with them your faith together, and the presence of God, Jesus said, Where two or three are gathered together, I am in the midst of them, so if we are there with them and intentional about expressing our faith. [17:06.3]

The second thing is to support the caregivers. Those of us who are not caregiving need to be supportive of caregivers through our acts of kindness, going by to visit. Again, if we don't know that they have dementia, we can't visit. We need to make sure that the people in our faith community know and express to them that we would love to have visits. Meals, take meals. Can you imagine being responsible for caregiving 24/7 and all of the care that you have to do, and then also you're the chef, you're the cook?

So, we can visit. We can take meals. We can send cards and remind them that I'm missing you at church. I remember the days that we spent together in church, our Sunday school class. Mention things about their faith because that will help the caregiver who's there. Say, Look, here's a card from the church and write their name on the card, on the envelope, so that you can let them see it. They may not be able to read, but you can say, Here's your name. They wrote your name on this card. [18:13.0]

Support caregivers and the person with dementia with acts of kindness. Support groups, you may not be able to start and facilitate a support group, but could you be there so that the caregiver can participate in a support group? Right now most of them are online anyway, so they would be in the home along with you if you are visiting, and so if there is a crisis, they would be there and you wouldn't have to be so frightened because, let's be honest, it's frightening for people who are not accustomed to being around people with dementia, and they worry about what happens if, but if you can go and be there and be with that person, and give the caregiver a break, let them participate in the support group. [19:03.2]

Then the next thing is respite care. Once you are comfortable being there, can you stay while they are gone for 30 minutes or an hour or two hours to get a break? Do you know how many caregivers don't ever go to the doctor because they don't have anyone to stay? We as the faith community can offer those kinds of things for the caregivers and the person with dementia, just a chance to go get your haircut or to go to the mall and walk around for a few minutes. Just those are some things that we in the faith community can do to support the person who has dementia and their caregiver.

I've made a long speech and I’ll let you…

Dave: No, I agree. I think you’ve got to be intentional on both sides. The tip I would give to those that are caring for someone with dementia is be ready for that question of “What can I do to help?” because a lot of people may offer to help, but they don't really know what you see, and so be ready for that. [20:12.7]

It may be as simple as what you said. Can you just sit with my mom for an hour while I go run this errand or go to Starbucks? Whatever the case may be, be ready for that because people want to help, but they don't really know how to help. If you're intentional and you say, This is what I would really need if you're available, and then I kind of look at it like if you're the one offering help, I mean, you’ve got to be gentle and kind, but maybe be intentional and don't take no for an answer.

In words, if they say, Oh, I’ll call you if I need you, because that's probably going to be what they're going to say most of the time, I would suggest you say, Hey, would this work for you if I just come by and bring some dinner on Thursday? [21:03.1]

Linda: Absolutely.

Dave: Let them say, No, that's not needed. Let them say no, instead of saying, If you ever need anything. Right? We're all guilty of that. If you ever need anything.

Linda: That’s so true. This is not about dementia, but I remember so well an experience we had in a church where there was a death in the family and I remember that there was a gentleman in the church who said to the grieving widow, “I will be by in the morning. Have everybody in the family pick out the shoes they're going to wear to the funeral and I will polish them.

Dave: Oh, wow.

Linda: What a simple thing, yes. So, can we say, I'm going to bring some tea bags and let's all sit down together, because you're inviting the person with dementia to participate as well and that allows you on your first time to do this to be with the caregiver who knows the person with dementia, and you can learn a little bit about. But you are so right. Be intentional about that. It's really important. [22:05.2]

Dave: Yeah. Gail, do you want to say a couple of things about Dementia Friendly Fort Worth? Y'all do such great things. I'd love for you to talk about that a little bit.

Gail: I just wanted to reiterate on what you've been saying about the church, stepping up to provide that extra support, that it's important for the church and the people at the church to understand what dementia is, and to understand how to respond.

That's one of the ways that faith communities can become involved in the Dementia Friendly certification, so that they can get some training and some education, so they do know how to respond in a way that can meet that need, because caregivers are hesitant to ask for and/or accept help, but if we're intentional and we understand what they're dealing with, we can respond in a way that can be helpful. [23:01.4]

Just like you both said, when someone passes away, we say, Call me if you need anything. They're not going to call because they don't want to impose, but if you call and say, I'm going to be out today. Can I pick up lunch? Can I bring by a pie? Can I take your car and go get it washed?

When my grandmother first lost my grandfather, the first time she had to take the car to get it washed, she was petrified because that's something my grandfather always did. It was to get the car cleaned and fill the car with gas.

Dave: Yeah.

Gail: If someone in the church had volunteered to do that for her for a few months, that would have meant so much if it was something she was afraid to do and she has never had to do it.

But learning about dementia and how to better respond can give and the tools to people in all parts of our community a better way to respond, so that those caregivers don't feel so alone and so that the person with dementia doesn't feel so alone. [24:06.6]

We're talking about spirituality and how to ensure that the caregivers and the person with dementia still have worship opportunities, but I also wanted to share that even in our activities program there's an underlying spiritual component because we're meeting the need of the whole person, and when someone is missing, the other participants want to know where they are and they're concerned. We follow up with the person that's missing to make sure that they are okay.

We recently had one of the participants’ husband who had a medical issue and everybody expressed directly to her that we would be praying, and there are different faiths who are participating in the program, but everybody wanted her to know that we were praying for them and that we were concerned, and everybody waited anxiously to hear that report back after the medical procedure. [25:11.5]

That's a sense of that community that's a part of our faith community that people, caregivers and people with dementia lose because that Sunday school class or that small group, or that social group that they've been a part of goes away.

Dave: Yeah, absolutely. Wow, this has been great. I'd love to have you all on and on in the future because I think that there are so many good things that Dementia Friendly Fort Worth does. Gail or Linda, if people want to reach out to y'all and find out more about what y'all do, what's the best way for them to do that? [25:52.5]

Linda: Please go to our website. It's Dementia Friendly Fort Worth, Dementia Friendly FW or just DFFW.org, and there are lots of resources on there. There's a calendar of events which lists our daily activity program, our chapel services, so that people can find those. Then there's a caregiver resources tab, lots of information on our website.

We would really encourage you to check out the website and look at the links that are available that will take you to other resources that we are aware of. We would hope that you would be able to join us for the activities program and the chapel programs.

If you want to be on the mailing list, you can. There's a way to let Gail know that you want to be on the mailing list. Gail, do you want to say a word about that?

Gail: From the website, there is a Contact Page, and if you click on that, it will let you send a message to reach out to us that you are interested in learning more about the resources that we can provide. [26:56.6]

Dave: Very good. Linda and Gail, I really appreciate y'all being on the episode, this episode of It’s My Turn To Care: Secrets for the Dementia Caregiver.

This is Dave Parks signing off as your host, and I'm a certified senior advisor and owner of Home Care Assistance. Always encourage you to visit our website HomeCareAssistanceFortWorth.com or call our office at (817) 349-7599 if we can be of service in any way. Thanks so much, and we'll talk to you next week.

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