Ep. 36 - Celebrating Holidays with Dementia-Inclusive Traditions

Imagine navigating the holiday season with a loved one living with dementia. It's undoubtedly a heart-wrenching reality, yet it also presents an opportunity to connect more profoundly with your loved one. This is the focus of our earnest conversation with the mighty compassionate Elisa Bosley chaplain and founder of Spiritual Elder Care.

In this fascinating episode, host Attorney Bob Mannor and Elisa tackle the sensitive subject of including dementia patients in our family and religious traditions. Elisa brings her wealth of experience to the table, offering practical tips for planning ahead and embracing the situation with grace and empathy.
 
Bob and Elisa also discuss the significance of treating our loved ones with dignity during holiday celebrations and the art of creating a conducive environment for them, emphasizing the importance of slowing down and involving them in meaningful activities. We even delve into the logistics of handling guests with dementia respectfully and inclusively. 

As we go deeper, we also explore the art of managing agitation in dementia patients during religious services and celebrations. We offer advice on reading body language, implementing a buddy system, and establishing a calming ambiance.

This episode is more than just a reservoir of information; it's a catalyst for fostering an empathetic and informed community. So, join us on this journey of learning, growing, and connecting.

Host: Attorney Bob Mannor, CELA, CDP
Guest: Chaplain Elisa Bosley
Executive Producer: Savannah Meksto

Transcript

Attorney Bob Mannor: 0:00

You're listening to advice from your advocates, a show where we provide elder law advice to professionals who work with the elderly and their families. Welcome back to advice from your advocates. I'm Bob Mannor. I'm a nationally board certified elder law attorney in Michigan and I'm very excited about today's podcast. We have a repeat podcast, but this one's gonna be a special topic here, so we have Elisa Bosley, who is a chaplain and founder of spiritual elder care. So you should go back and listen to the podcast that we did before with Elisa, but today we're recording. It's in the middle of the holiday Time of the year for us, and so we thought it would be an appropriate conversation To talk to Lisa about how to Incorporate your loved ones that have dementia Into your family traditions, your family religious traditions and things like that. So welcome a Elisa and thanks for joining us again.

Elisa Bosley: 1:00

Oh, thank you so much for having me back.

Attorney Bob Mannor: 1:01

It's great to be back so at least I tell us a little bit about your ministry with the, the spiritual elder care sure.

Elisa Bosley: 1:11

I am a licensed Nondenominational Christian chaplain and I have a special focus for meeting the needs of older adults who are living with Alzheimer's disease or other dementias. I Also have a heart and calling for helping others to do that kind of work. It's my, my calling to make it as easy and doable for other people to do this kind of spiritual care, which I just think is so important. So I've created an enormous repository of resources Bible study discussion guides and church worship services and Recorded classic hymns, all designed to be Suitable for adults that are living with dementia and they're all for free on my website, spiritual elder care Com, and on YouTube. I also consult with people one-on-one and just try to try to make this kind of care Common rather than rare.

Attorney Bob Mannor: 2:12

Well, lisa, I know we talked last time about this, but I so much appreciate your ministry With my own parents having gone through you know, the dementia journey. It was very difficult. They've been lifelong. You know participants in their faith and their religion and their church and it was very difficult to incorporate that, and so it's nice to know that there's a resource out there that can help us to incorporate this, a very important part of life and make it more palatable or more Sort of user-friendly, if I'm if I can use that term right Mm-hmm right, exactly, I mean, that's the thing.

Elisa Bosley: 2:55

It's such a, it's such an important part of so many elders backgrounds and such a high value for them participating in their faith traditions, and so to Suddenly or, you know, even gradually not have access to that faith expression or ways to Enjoy and gain comfort from their faith, I just I couldn't live with that. So that's where spiritual elder care came from.

Attorney Bob Mannor: 3:21

So I encourage everyone to take a look at Elisa's website and All of the resources that are there, because it's it's just a great resource, and to offer this to the public for free and on your YouTube station.

Attorney Bob Mannor: 3:38

So so, very important. So today is a timely topic. Now, depending on when you're listening to this podcast, it may no longer be the holiday season, but really, when it comes to faith and family traditions and things like that, it is a year-round thing. So whether you're listening in the holiday season or not, this is still going to be relevant, but as we record, it is, you know, coming up by Christmas. So I wanted to talk to you today about how, if you can give us some tips on how to incorporate the care for your loved ones suffering from dementia in the upcoming holiday plan. So, if there's gonna be family parties, if there's gonna be going to midnight mass, I might not be an appropriate, best option for someone with dementia, but you have to incorporate some of the religious traditions or some of the family traditions If they're hosting someone with dementia this holiday season.

Elisa Bosley: 4:35

That's great, such a great question and, as you point out, it's so appropriate during the holiday season, but these ideas also pertain to family reunions or Birthday gatherings, so I hope that they're helpful. I think the main thing that I would say to start with is to Plan ahead, to give it some thought ahead of time. That might sound obvious, but it could be that you know you think, oh well, they'll just come and it'll be all fine, and that's really not accurate, because if you have someone joining you that is living with dementia, there are going to be changes and For the person living with dementia and the family members, giving some thought ahead of time is Going to set both of those parties up for success. And that's what you want, right? You want to realize, before you even have the gathering, that things are gonna look different, and I think during the holidays that can be especially challenging.

Elisa Bosley: 5:36

I know you know, families have a certain way of doing things, in a certain way, things should look in a certain menu that they're gonna have, and so having that flexibility can be especially hard during the holidays. So, again, thinking ahead and realizing that things may not look exactly like they used to look, to manage your expectations in that and to be ready and able to let go of some things and to be flexible as an act of love. Right, that not just sort of oh darn, we have to do it in a different way, but really taking the time to create a posture of we are going to be flexible and not demand that things be done exactly the way they've always been done, as an act of love to this person who, by the way, can't help it right, it's not like the person living with dementia is just being difficult or trying to be stubborn. They have a brain disease and that, to me, is a really important compassion building attitude to take.

Attorney Bob Mannor: 6:48

I'll give a quick example and one tip. My quick example was that my parents used to always host the any of the holidays, and we'd have four generations. We have a very big family, and so we'd have kids and grandkids and great grandkids and all of that. And what we realized after a couple of these was that my mother would notice the cues. And so it's very interesting how the brain works, even with dementia notice the cues.

Attorney Bob Mannor: 7:22

And one of the cues that she seemed to seemed to get a bit agitated by was when it got dark outside. Well, in Michigan it gets dark pretty early in December, and so we had to adjust the time of our party, because we usually would have got there when it's still a light out, but it wouldn't be too long before it got dark. Well, we realized that her brain was telling her that means it's time to end the party or it's time to go, even though she was at home. And so it was an easy adjustment for all of us to say, hey, let's make it where we start a little bit earlier, because we realized when it starts to get dark, she's gonna, might be where she's anxious, because she's thinking, okay, that's a cue to me, that I should leave, or that these people should leave, or things like that.

Attorney Bob Mannor: 8:10

And so it was a nice easy adjustment, just to say, okay, how hard is it for us to change the party by a couple of hours? Let's get started a little bit early.

Elisa Bosley: 8:19

That's an excellent, excellent example, yeah.

Attorney Bob Mannor: 8:22

My tip is if you have a family like mine and we're bringing in multiple generations, one of the things that was true is, occasionally there'd be a new person coming a girlfriend, boyfriend of one of the grandkids or those types of things and my tip is to make sure that there's a conversation about that beforehand. People have different levels of understanding and experience with dementia and if the new person is coming and doesn't have that life experience, they might not be very nice to somebody that keeps repeating themselves, or asking the same questions, and things like that.

Attorney Bob Mannor: 9:02

So, it's just one of those things. Like you say, plan ahead, start thinking through some of these things. If there are gonna be new people, maybe look up at some of the resources at your website. Maybe look at ways to make sure that you're kindly letting them know that there's a unique experience that they might have there and to be nice.

Elisa Bosley: 9:25

Right, right. Well, you're basically reading off of my notes, because that's exactly right, I think. The example I think of. As many years ago we had a huge reunion, a family reunion, and ahead of time I asked my mother-in-law's permission to send a letter to the rest of the family explaining the current condition of my father-in-law, who had Alzheimer's. A lot of the people at this reunion hadn't seen him in a long time and I wanted them to feel again you wanna set everybody up for success. I wanted them. They loved their uncle Rex and they wanted to know what to do. But they didn't, and so they had.

Elisa Bosley: 10:09

I was able to create a letter that just gave them some basic tools, saying look, there's no shame in this, let's take that stigma out of here. And say, look, this is just a reality that we're dealing with. Here's how we can all enjoy the time together. Here's how we can give my mother-in-law a break and a chance to hang out with people in the family that she hasn't seen in a long time, and it can be the simplest things, right? So, again, giving people a heads up. A lot of people can react badly if they don't have the tools. There's fear, there's fear and there's frustration and oh, the person's just not trying. It's not that at all. Again, it's a brain injury. So that kind of tends to help people with a category. But there's other simple things like wear name tags.

Attorney Bob Mannor: 11:05

It's why would you Sure?

Elisa Bosley: 11:09

And you know it might. Everybody might think, oh, that's ridiculous, this is just our family, Everybody knows each other. But again, if you're wearing name tags, that takes a piece of that puzzle for the person living with dementia.

Elisa Bosley: 11:22

They don't have to guess what the person's name is and you should never ask them like oh, do you remember me? What's my name? Right, that's another, you know? Just a helpful tip Please don't quiz the person, please don't argue with them. It's not that they're not trying, it's that they can't access the information that they used to have in their brain. So again, name tags are such a simple thing. Everybody can wear one, and it just makes it easy. And then when a person interacts with the person who has dementia, they can just offer that relationship. Hey, uncle Joe, you know. Hi, Grandma Mary, you know. So the person hears that says, oh, I'm the grandma, oh, I'm the uncle, and they have that piece already there, and then they can interact. This is just, you know, simple, loving tools that you can use.

Elisa Bosley: 12:16

And the holidays you alluded to this, bob, the holidays are such a perfect setup because there's so much tradition and repetition. Like you said, your mom could recognize some of the forms, including when the sun went down, but the traditions are married, particularly during the holiday time. So there's a real opportunity to have a lot of success because those forms are so familiar. You know, the things that people see, the things that people hear, the things that people smell or taste During the holidays, there's all those long term memories, so there's a lot you can work with there to set people up for success.

Attorney Bob Mannor: 13:02

I know that you and I have talked about this before in the context of religious services but the importance of music, the importance of the things that they you know you can never forget a certain tune and to incorporate that, especially if that has previously been part of traditions to do, you know somebody play the piano or maybe have some religious hymns, things like that, that could be a real nice addition to the priority.

Elisa Bosley: 13:35

Oh, music is a huge one. I mean, you can. You can have music in the background, you can have, like you said, a sing along. You want to think through again. This is part of that preparing ahead of time. You want to think through ahead of time. What did this person enjoy doing? What did they do well, and did they do they enjoy helping? Would they like to help set the table? Would they like to help even you know cook? Now, that would be something like having them stir something or add an ingredient. You know what did they like to do?

Elisa Bosley: 14:07

Give it some thought ahead of time and then say, okay, how can we simplify that? How can we engage that person effectively? Let's have it all set up ahead of time. You know, again, this is we should start with this. Really, this is all about imparting dignity to the person, to the person with dementia, and, at the same time, making the time pleasant and enjoyable and meaningful for everyone there. Right, because there's when you do focus on okay, we're going to make this a dignified, meaningful interaction. We're not just going to invite the person and then put them off in a chair and hope that they're quiet. You know, we're going to say this is a person that's part of our family. They always have been and they still are, and their level of cognition or cognitive ability doesn't change that. They're still a person of dignity and a member of this family and a member of this friend group and a member of this church, and let's acknowledge that and make it work.

Attorney Bob Mannor: 15:16

Well, at least you did a perfect segue into my next question. I did want to kind of change the conversation a bit, because we've been talking about how to incorporate. I think we need to have to answer that question why, why?

Attorney Bob Mannor: 15:31

to incorporate the person with dementia into the plans rather than, you know, not include them. I do think that some folks might have that tendency to say, hey, well, you know, if they have some memory issues or things like that, maybe we'll just not invite them or leave them out. Why is it so important to continue to have your loved ones with dementia participate in the way that they can?

Elisa Bosley: 15:57

Oh, yes, that really is the key Again, that that incredible value and reality of their dignity as a human being. We want that for ourselves and why would we take that away from someone or not make an effort to express that inherent dignity to someone who has a brain disease? Why would we do that? Why would we not accommodate them? So it's up to us to learn some tools to make the effort to welcome people living with dementia because they are. They don't have the ability necessarily to engage with or interact with our world the way they used to, but we can enter into their world, we can do that, we have the ability.

Elisa Bosley: 16:48

The other, well, there's many reasons why.

Elisa Bosley: 16:51

The other reason again we alluded to these traditions, by their very nature, are embedded so often in long term memory, and that is where people living with dementia live.

Elisa Bosley: 17:02

They live in place of the long term memory and the procedural components of the holidays and those rituals, the sounds, the smells, the taste, what we were talking about those are already, they're hardwired in, and the music, again, is a huge part of that, I think.

Elisa Bosley: 17:21

The other why is that the people living with dementia have a lot to teach us, a lot to offer to us because you know what better time in the holidays that we tend to get this like everything has to go fast and there's this hyped up sense, but when we stop and think about it we think, no, what do I really want the holidays to be about? I really want the holidays to be about connection and love and the expression of all that really matters in life who we are, as people are. Love and and people living with dementia really force us forces and quite the right word, but by their, by their very being, we are required to slow down and to really pay attention to what's going on. So, as we are connecting and making an effort with a person living with dementia, they serve us, they teach us to slow down, to really focus on what matters, to stop and smell the pine cones in this case right, to really enter into what we inherently know is the really important part of the holidays, or really any gathering.

Attorney Bob Mannor: 18:43

That reminds me of the story from the Bible with Mary and Martha and just the importance of slowing down and that we regardless of if we have somebody with dementia that taking time, you know, at the holidays, to not worry about if everything looks perfect or if we have the perfect tree or the perfect decorations, but slow down and, you know, engage in the experience of it.

Elisa Bosley: 19:10

Right, right, we can get so wrapped up in. You know, I got to do this and I got to do that and it's got to be like this, and so it's back to what we said at the beginning. It's like no, we need to learn to let go and to be flexible and to slow down. And I guarantee the blessings and the beautiful points of connection and the surprising things that can happen when you slow down with someone living with dementia. It's, it's wonderful to see I have innumerable stories of you know sort of what happens when you're slowing down and paying attention.

Attorney Bob Mannor: 19:42

Well, you've mentioned about. You know it's important to plan ahead and kind of set the stage, and one of the parts of setting the stage is making sure that that first the first part of it. I think there's always. Any time you're going into any setting, anybody with social anxiety will understand that as soon as the walk in, the introduction, the beginning of it sometimes is the is the part that has the most anxiety around it. Once you get settled in, everything is good. And so talk about that, maybe how to navigate the arrival of your guests that has dementia.

Elisa Bosley: 20:19

Oh, what a great question. So, yeah and yeah, I mean you really hit the nail on the head. It's like you want to, at every, at every juncture, at every opportunity. You want to be aware, to simplify, to not get too fast or wrapped up, and that includes just like right when you get there.

Elisa Bosley: 20:41

I think one of the things that I Was, as I was thinking about this ahead of time, if it's a family gathering or a large group gathering, you really might want to consider a buddy system, basically a one-on-one buddy system for the person living with dementia, because a One-on-one interaction is going to be far easier, far more likely to succeed. Then, you know, a person with dementia trying to interact with a group. It's just too much stimulation, it's really hard. So it could be that a family or a gathering, a church gathering ahead of time decides okay, we're gonna have a buddy system and you're gonna be the person that I greet and you know, and then 15 minutes later, maybe So-and-so will come, sit down with the person and just have a one, and they don't even have to talk. I mean they really should follow the lead of the person with dementia. Do they want to eat something. Do they want to chat? Do they just want to sit and watch a little football or a Christmas movie, do they? And maybe you know every so often that you know buddy system, you trade off.

Elisa Bosley: 21:54

Number one, so the caregiver isn't necessarily the person having to do the entire, you know, gathering by themselves. Number two it it again sets up the person living with dementia with better success having just a one-on-one conversation. And number three it teaches. It teaches the people there that do care about this person. I am presuming that they don't have anything to be afraid at right, that they can be with this person and love them and Serve them just by holding their hand, you know being with them for a few minutes.

Elisa Bosley: 22:31

So that's one thing I would say, especially if it's a larger gathering, if you can kind of get those smaller, smaller groupings or one-on-one, even better. And there's also it's not a bad idea to have planned ahead a quiet room that you could go to, like it's just you know, I know gap family gatherings, there's little kids, there's dogs, there's, you know, they're everybody's cooking and we're down it out of that a lot going on. And maybe you have Just a quiet bedroom or a little sitting room or something where the one-on-one, the person living with dementia and one of the person can just go and just Sit and maybe sing a song and or look at some pictures again.

Elisa Bosley: 23:18

They don't really even have to talk, but just to kind of give that sensory calm, whether that's for a long time or for just a few minutes. You kind of have to gauge that has the person doing, look at their body language, see how it's going. But it's helpful to have a little place to remove to. I like that, my goodness. I do that when I'm in a big party like go hide a few minutes in the bathroom or something.

Attorney Bob Mannor: 23:46

Yeah, that's a couple of things I have five children and their natural tendencies when they go over to grandma and grandpas would be to just swarm, go in, swarm and really give hugs. In the later stages. What we decided and made a point of, you know, getting the kids to understand the importance of this was to sort of take shifts and instead of immediately going in and swarming, we knew that we weren't going to stop the youngest from going up and hugging grandma, so youngest got to go first and then, you know, we'd have that, get some calm instead of being swarmed and all this activity and all this things going around. Just one at a time they'd go and they'd sit down, they'd give grandma a hug, they'd go down and sit down for a few minutes, talk through things and then take a minute, even a little minute, in between. So they kind of had shifts and they enjoyed it because they really got more time with grandma that way, rather than everybody just kind of swarming and then going off and getting snacks or something like that.

Elisa Bosley: 24:53

So I think that's important to you, that's a great strategy and you make an excellent point. Do not shield children from their loved one with dementia. This is a valuable, valuable learning experience and, again, nothing to be ashamed of, and I think as we, oh, my goodness. And of course, it's so great for the elders who love to see children. I've not yet seen a person, whether they have dementia or not, an older person who doesn't love the energy and just the joy of having small children around. So that intergenerational thing is just really great. Do not shy away from that. It's an excellent opportunity all around.

Attorney Bob Mannor: 25:36

You've addressed this a bit, but I want to highlight the point of the size of the gathering and maybe some strategies and you've discussed this but I just think it's worthy of highlighting this and just emphasizing the importance of being aware of the size of the gathering, if there's things that we can do to kind of address that we don't necessarily not want to have the whole family there, but to maybe have it be where we have segments or we can do it in smaller pieces.

Elisa Bosley: 26:12

And you said it at the very beginning be flexible with when, accommodate the person and the caregivers, schedule and know what's the best time of day for them, when are they at their best, and arrange if you can arrange your time to suit that so that they'll be in a better place, better able to engage.

Attorney Bob Mannor: 26:40

We addressed this a little bit earlier and it's a good segue as far as what you're saying, as far as the timing and looking for those triggers. What, if what are some of the warning signs that the celebration is becoming too overwhelming, and what can you do about it if you see that there maybe is too much stimulation?

Elisa Bosley: 27:02

Yes, we've touched on this a little bit. I would say certainly watch the person's body language. If they're starting to look angry or distressed I mean, it doesn't take a genius to figure out that something's wrong and that there could be just too much going on for them. Are they looking or sounding uncomfortable? Just be aware and again, I'm not saying that lightly I understand that in a big group that can be hard, but that's where that buddy system is gonna come in real handy.

Elisa Bosley: 27:35

If you have someone who's just right at their time, they're just focused on that one person. They're not trying to talk to 10 different people. They'll see that, that you can pick up on cues like that If they are. If the person is getting agitated and starting to speak in an agitated something triggers them. This is something I learned from Tipa Snow, who is just a luminary in dementia field.

Elisa Bosley: 28:00

She says you know, don't try to talk them out of it. Actually match their tone. They're upset. They don't want you to tell them that they're not. They shouldn't be upset. Don't be upset. Don't be upset, it's okay. That's just gonna make them more upset, right, and I've used this myself and it's incredible how it works. So I'm thinking of someone who something triggered her. She was convinced that somebody was stealing, had stolen her glasses, and she was just he's coming. He's coming to get my glasses. I called the police. What's gonna happen? Nobody's listening to me and I said oh, my goodness, that's terrible that I can't believe it. I'm so glad you called the police. I'm matching her tone.

Attorney Bob Mannor: 28:42

Right.

Elisa Bosley: 28:43

So she feels seen and heard. And then, as I'm matching her tone, I'm slowly starting to ramp it down Right, like okay, we're gonna, really we're gonna be on top of this. This person is not getting back here, not while I'm here, you know. And she's like, yeah, well, what if he comes back? You know, I was like, nope, this person's not. So I'm just ramping it down, right. Nope, this person is not gonna come back. We are safe here. You're with me, we're not gonna let anything happen. And I kid you not. She said thank you for listening to me, thank you for listening to me.

Elisa Bosley: 29:19

She just gave me this huge hug and then, you know, it took a while I'm telling you this in 30 seconds but it took, you know, probably 10 minutes maybe, and then she was okay, right, she got past that. Whatever that trigger was, I didn't need to figure it out, I didn't need to correct her and say you know what are you talking about? Nobody's here and nobody got in In her reality. She was in trouble and I needed to acknowledge that and then help her feel. Like I said, seen and heard. So there's that.

Elisa Bosley: 29:52

There's also an issue that and I've had this happen to me too where I become part of the problem For whatever reason in the person's mind, they get mad at me. Right, and again, it's really important, don't take that personally. Right? They're not right. It's not something that other actually mad at me. There's some trigger that's going on. But if you, if you're in a situation with a person living with dementia and you realize that you are part of their agitation, you need to just get out of there, just remove yourself from the situation. Again, here we back to the buddy system, right? Somebody else needs to step in because right now in their mind, you're part of the problem. I'm. You know I'm part of the problem. I, like I said I've had this happen. I don't do it intentionally, obviously, just remove myself, like, okay, now I'm part of the problem, I don't need to understand why, I don't need to ask why. I'm just gonna remove my room myself and then, in your number fifteen minutes, come back in. They will likely remember Just working with that and then again having that, having that quiet room, making sure they're hydrated, making sure that you put some water, punch or something in front of them.

Elisa Bosley: 31:08

If you ask them, are you hungry, are you thirsty? They'll probably say no, because to even figure out whether they are that's too hard. So make sure there's something to drink in front of the. Make sure there's something to eat in front of them. If they haven't gone to the restroom in a long time, just gently say, hey, let's stop off here at the restroom because they might just need to go to the restroom. Something starting to agitate them. Yeah, so those are just some tips. Music, again, is a great way to kind of ramp down Any agitation. Just get to a place where you can play something that you know they love. That could be being, cross, be, or, you know, jazz or, but again that music can be a lovely calming influence. So those are just a few ideas.

Attorney Bob Mannor: 31:56

Well, at least such great advice, especially for this time of year when we're celebrating the holidays and Interacting with religious communities and going to religious services. All of these are excellent tips. I highly encourage everybody to check out, at least as website. If you can tell us the website again spiritual elder care dot com.

Attorney Bob Mannor: 32:19

Excellent spiritual elder care dot com and at least is also available for for consulting, and I think that you've actually maybe consulted with some Assisted living and memory care organizations, right, because this would be an excellent thing to try to incorporate into your, your care facility if, especially at this, you know this time of year. So appreciate everything that you do and appreciate you coming on our podcast. Thank you so much for all of the advice and all of the work that you do. Remember, if you like this podcast, don't forget to subscribe, and you can listen to the podcast on any of the podcast services where you listen. You can also watch on YouTube if you like to see our smiling faces. But don't forget to subscribe and we will see you at the next podcast.

Elisa Bosley: 33:14

Thanks again, bob. Thanks for listening. To learn more, visit mannorlawgroup. com.