This is the Whole Care Network. Music Helping you tell your story one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music We both wish we knew about creating a quiet, safe space for our care receiver during holiday events earlier in our caregiving journeys. Yes, we do. In this episode, we're talking about being intentional in our considerations for our care receiver, family members, friends, loved ones, and for ourselves as we navigate the holiday seasons. We're bringing five tips. Nancy, are you ready to get started? I am. Welcome. We're Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music The holidays are filled with a lot of activities and a lot of emotions. So we want to make sure, as Sue said, that we're being very intentional about our planning and preparation. Absolutely. And Nancy, in the very beginning, we may not have to do anything special. And yet, that time will come. Yes. So you're right. At the beginning, all may be good. But your job is to observe and adjust. And part of that, observe and adjust is understanding when you need to potentially prioritize calm and familiar. Because we want to be very intentional about our holiday events so that we can create the best environment for friends, family, your loved ones, and make wonderful memories for everybody. Absolutely. Now, the thing that's going to cause a wrench is the lack of routine, because that's the nature of the holidays. Sue, tip one? Yeah, tip one would be about routines. And it's how to keep them. What we know as caregivers is we are working so hard all the time to create and to refine the routines that help our care receivers and us throughout the day. For our care receivers, we're really focused on helping them keep calm and be connected with the familiar as long as possible. And it's also about us, so that we have routines that let us practice self-care and also to prevent our burnout. So, you know, holidays, Nancy, holidays, routine, they got eight letters. That's about where this similarity ends for sure. That's about where they're, it's so easy during the holidays to get out of our routines. And yet it's, when that happens, that's when they lose their calm and they become disconnected from the familiar. And they can spiral, emotions can spiral for your care receiver at this point, creating fear, anger, anxiety, agitation. It's definitely, it definitely can be a big challenge. It can be a really big challenge. I'll give the example with my dad. My dad, for him, quiet and rest were really important. There were times of the day where he could have more activity, but he didn't like anything loud and he didn't like large groups. Well, that's a lot about, you know, what the holidays are. He also had his dementia routines. One of them was walking the dog and another one was closing the blinds. What we did as a family is we looked at dad's routine. We looked at my routine. We looked at my stepmother's routine. We looked at everybody's routines and what we wanted to be getting done. And all the family members talked together about who would come and when and how we would do everything so that we could keep him. Calm and not agitated. That's not always possible. And that's what leads us to tip two. Thank you. Because tip two is about being intentional. Remember upfront planning for a calm, quiet, familiar environment that you will take your care receiver into if they become agitated. Our first suggestion here is if you can avoid having the main holiday activity in their calm, familiar place, that's ideal. Now you may not be able to avoid that. If you can't avoid it, please try to have another place in mind. Know upfront. Okay. He or she gets agitated. Here's the calm, familiar place. I'm going to take them. That's away from the main event. And make sure everybody knows what that is. I like that. I like that. Expectations with everybody. Have everybody know the importance of it and where it's going to be. I like that. I like making the more you can prepare the people that are at the event so that nothing comes as a surprise, the less of an issue it's going to be if something does happen. We started having our Thanksgiving meal. We're in the U.S. So we had our Thanksgiving meal down in our basement as opposed to in our main level. My husband's calm, familiar place, quiet place is the main level. So we took the crowd down into the finished basement and that's where we had Thanksgiving meal for a few years. We would bring him down to the basement and he could enjoy being with everyone or at least participate. I don't know how much you enjoyed it, but he could at least participate. But then there came a time where it was just too much noise, too big a crowd. That was not going to work. So we would make a plate for my husband, his caregiver. We'd take that up into his to the main level, which was his calm, familiar environment. They would have Thanksgiving dinner there and then people could one on one go up and have a one on one conversation with him and visit with him if they wanted to. Now, that really leads us into tip three, the if they wanted to part because you need to find a place in your heart to give grace to those who maybe just can't deal with that. And that leads us into tip three, which is setting expectations and giving permission for people to not come visit if they choose not to and then also to give grace to them. The holidays are times when people come visit and it's a time when there are a lot of families around there are a lot of traditions and some of our family members haven't seen our care receiver for a while or they haven't seen them at all. And it's reasonable that they might be uncomfortable. Some of the reasons would be that they haven't seen our care receiver at all and they don't really know what to say or do. Another one is to expect. So sometimes it's just we don't know what I don't know what to expect. So I'm scared to do it. Exactly. They don't know what to expect or they've seen our care receiver. They know they were diagnosed, but when they saw them, you couldn't even tell and now you can. And again, they just they they're uncomfortable with it. Another one is they're they're processing. It's a family member, perhaps, and they're processing their own relationship with their loved one. And then the fourth one is some of them have been on caregiving journeys as well and they're processing the emotions of their own journey. You know, relationships are complicated and it may not be possible to do this, but wherever you can give everybody grace. Give them permission to be uncomfortable and help walk them through it. And if they choose that they don't feel comfortable seeing your loved one, give them grace and say it's OK. Yeah, so you're so good at this. This is something that honestly, I really had to learn from you. I'm still not as good at it as you are, but I had I really had to learn from you because it's not natural to it's not as natural to do. And and it's really important because, you know, we can't be judging everybody's emotions. It's not it's not reasonable. We need to find the grace to let people deal with their emotions the way they best the best way they can. Because they've all got their own emotions. And I'll give you a quick story with my husband. He had a dear friend for many years and this friend's mom and sister had both passed away from diagnosis of Alzheimer's. And he was really uncomfortable with it. And in the beginning, my husband didn't really show that he had the diagnosis. He didn't you couldn't really tell as you could start telling this friend quit being around him. He was just so uncomfortable with it. And he shared with a mutual friend that he felt tremendously guilty about it. And when I heard that, it's like, I don't want him to feel bad about it. So I went to him and I said, hey, please don't feel bad about it. Jack loves you. I love you. We understand what your feelings are. Please, if you're not comfortable coming to see him, we don't feel bad about it. We love you. And it was such a relief for him. And it was a great way to go ahead and give grace because then on his journey with his healing from what he'd been going through, he could also be at peace. And I was at peace. Well, that's very nice. It's a great tip. Now, if they are comfortable coming to visit and they are going to visit, one of the things we want to do is to teach them how because it's true. They may not know how. Yes. So tip four is teach your visit your family and friends how to visit. First, you need to help them understand what to do and what not to do. You know, you'll know, you know, you'll love one better than anyone and you'll know for a holiday event what to expect or what you think your loved one is capable of doing. My father-in-law loved to sit at the table, the dinner table with everyone and just listen to everyone laugh and tell stories. He didn't really participate, but you could tell he loved it. For my husband, there's no way way too much. So he needs to be really more one on one. And so, you know, at the point where it needs to be one on one, if your care receiver is going to be sitting down where people are coming to visit with them, make sure you have a chair sitting next to them so that the visitor is eye to eye. Explain to them to approach your care receiver slowly and to speak softly. I'm really big on this. Help them think about checking their body language. Check your body, tell them, check your body language, put a smile on your face, speak and be happy. Speak calmly and slowly and just be happy about the whole interaction. Don't be concerned. You know, that's a big part of how that interaction is going to go is that person seeing the look on your face. If you've got a big smile on your face, I'm telling you, my husband can get a big smile on his face. He does. He does. He walks up to him with a big old smile and he gets a big old smile on his face. Right. Right. You look terribly concerned. He's got to look terribly concerned. So body language, huge. Two more points. Really big one. When you're teaching people how to visit and they're visiting and speaking, talking to your care receiver, please ask them not to ask your care receiver to remember. Please don't ask them to remember. Not remember when we went caroling instead suggest they say, I loved go caroling at Christmas. I love jingle bells. You know, see if let the care receiver either participate in the conversation or not participate in the conversation, but don't test them. That's really what remember turns out to be. It's a test. Do you remember when? Do you know my name? Do you know your birthday? I mean, let's not test them. We want them to preserve their dignity as much as we can. So let's stop the test and you have to teach people not to do that because something about that there's a natural thing of, do you know who I am? So please teach them not to test your care receiver. The second thing that I'm big on is please ask them not to talk about your care receiver within earshot. So you just don't know what they're connecting with that day and what they're not. And so it's, I'm surprised on a regular basis where, you know, you don't think your your care receiver, my husband's paying attention and then all of a sudden he'll make a, he doesn't, he can't really make a big comment, but he'll say something that is sort of on track and you're like, what? So do not talk about your care receiver within earshot. You are them. That is another place in time for those conversations. Absolutely. And I'll give you an example from our experiences after we had moved my husband into memory care and he'd been there for a while. Two employees were talking in the hallway about something business related going on with the care community. And my husband was sitting a few feet away apparently and they talked for a little while and then they said he got up, walked over and said something on point. They said it was really great advice as though he didn't have dementia or anything about exactly what they had been talking about. And they said it absolutely startled them that he was so clear and so specific. So we don't know. We don't know what they connect to. We don't know when they're connecting. Assume they can connect to everything. Agree. Agree. Assume they can connect to everything. So speaking of connecting to things, our last tip, you may find whatever holiday you're preparing for, you may find you want to decorate for that holiday. Seems reasonable. That's what you do every year. So tip five is about how to do that successfully. And I'm sharing this tip because I'm a great example of not doing it successfully. And I want your experience to be better than mine was. It was a great learning experience. Whatever holiday it is, and you're getting decorations out, decorate gradually, make changes gradually. Now that I am wiser, I recognize why this is. And it is partly because they have changes in their vision. They have changes in their depth perception. They see light and shadow differently. And for example, a big old Santa Claus may seem like a monster to them. We don't know that. My husband loved, and this is the Christmas holiday I'm going to be talking about. It could be any holiday, but Christmas, he loved Christmas. And we had all kinds of decorations, strewn different places in the house. It was Christmas time. I get all the decorations out. I get the trees out. I put the lights on. I get all the ornaments on because this is going to be such a joyful time for him. We've got spinning trees with blinking lights, all that stuff. All this stuff going on. He comes in and he goes over to the tree and he starts taking the ornaments off and throwing them in the trash. Then he's trying to pull the lights off of the tree. Then he goes over to the nativity scene, which he's taking apart. And it was the way he took it apart. It could never be put back together again. But like, I'm kind of like, what, what, what? Okay. It doesn't occur to me, you know, that all of these things were so overwhelming to him. Well, the blinking lights were flashing and they were sparkling off of the ornaments. So he's seeing all of that. So it was really very agitating to him. As soon as he went to bed, I undecorated absolutely everything. Took all the tree down, took everything down. And I got one little nativity scene, one that was all one piece. I got one little nativity scene and I put it out. I also got one strand of Christmas lights out to test out. And I just put it across the table so there would just be that one string of the lights. And I put them out just for me to kind of see what might work. When the lights were on by themselves and not blinking, he was okay with it. But as soon as I had them blink, it was very agitating. Whatever holiday it's going to be, practice very gradually changing their environment with it. On the other side, one of the things that didn't go away. So this part of the holiday he really struggled with. Other holidays, the thing that he always connected with was the music. 100% Irish, St. Patrick's Day. He would sing with all of the music. If it was Valentine's Day, he would sing with the music. So test out the things they connect with and do it very gradually. Do you like the Christmas music still? Oh, he loved it. And I would play Christmas music for him in July. He had certain, you know, we know what songs they like. We didn't care whether it was holiday specific or not. I played the songs he enjoyed at different times of day and on different days. And he connected with them and it was great. He connected with the music. That's awesome. Okay, are we ready to summarize? Yes, ma'am. So today we talked about being intentional about planning and preparation for the holidays. We talked about five different tips. First, know your routines so that you can work around them as best as possible. Two, when the routine falls apart and agitation occurs, make sure you've prepared, you're prepared with a calm, quiet, familiar place to take your care receiver. Three, give grace and permission to friends and family who are not comfortable visiting. I hope I can do that. Four, when people do want to visit, teach them how to visit. And five, if you're going to decorate for the holiday, decorate gradually. Don't do what Sue did. Please, please don't. If you have tips. Play music while you're doing it. Play music while you're doing it. Play music while you're doing it. Perfect. If you have tips that you think others could benefit from, please go out to our Facebook page, our Instagram page. Their links are in the show notes and give us your tips. That would be great. If you like this podcast, please follow it or subscribe to it, rate and review it and share it with your friends. Getting through the holidays can be stressful enough on its own. Now you have someone else to worry about. So be intentional with your preparation and planning and you'll get through it okay. We're all on this journey together. Yes, we are.
