Celebrations and Holidays

This special holiday episode of Spotlight on Care offers practical, compassionate guidance for planning celebrations with loved ones living with Alzheimer’s or other dementias. Co-hosts Virginia and Steve share personal stories and helpful tips for creating calm, meaningful gatherings—from keeping events small and familiar to preparing guests in advance. They discuss the value of routines over traditions, involving the person with dementia in simple activities, and recognizing signs of stress or fatigue. The conversation encourages caregivers to slow down, adjust expectations, and focus on joy in the moment.

Chapters

• 0:00 Intro and Welcome
• 1:24 Importance of Planning Ahead and Setting Realistic Expectations
• 2:48 Creating a Calm and Familiar Environment
• 4:51 Importance of Routine over Tradition
• 8:31 Preparing Guests in Advance
• 12:27 Tips to Get Loved One in the Mood for Celebration
• 17:01 Prioritizing Self Care During Planning

Transcript

0:06

From the University of California, Irvine, this is UCI MIND's Spotlight on Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.

Virginia: 0:22

Welcome to Spotlight on Care. I'm Virginia Naeve, and I'm here with my wonderful co-host, Mr. Steve O'Leary. We got to thinking one day that it might be helpful to our listeners to hear some practical tips on caring for a loved one with Alzheimer's or other dementia during celebrations, birthdays, holidays and other important family gatherings. We all know that those things can be filled with joy and tradition and many happy family times, but they can also bring stress, sadness and a deep sense of change. How do you manage everything and still find moments of peace and joy for yourself and family members, whether you are hosting, visiting or just trying to get through the celebration, you are not alone. And I would like to mention that we all could use a little advice on how to handle those situations. So let's get started. I'm going to start asking the first question for Steve, which will discuss the importance of planning ahead and setting realistic expectations.

Steve: 1:35

Yeah, that's a good segue after what you set up, because things change. You have to maintain your flexibility, you have to really know a little bit about what's going to happen on the day, so you have to plan ahead and be prepared for it, but at the same time, you have to be aware that things are going to change. Thinking about it from the standpoint of traditions and routines, and we're going to cover that a little bit later in more detail, but the reality is, is that quality of the experience is far more important than quantity. So don't worry about the fact that you were planning three hours. If it's apparent everybody's had a great time and it's an hour and a half, then it's great. So be open to new memories as you go through these things. Know that the holiday or the celebration that you're experiencing will be unique. And kind of put your hat on about the fact that this is going to be a different one. Maybe some of the things that you used to do will be different in this case. So try and prevent chaos. The way this gets executed is sometimes 20 people at a celebration doesn't work as well as maybe five or six. Trying to figure out how to make it more important for the loved one is really the issue, rather than having way too many people.

Virginia: 2:47

That's the key.

Steve: 2:48

So let me ask Virginia the next question: Create a calm and familiar environment.

Virginia: 2:55

Well, if there are people out there like I am, the holidays, the decorations come out, the lights get strong. It is crazy, chaos, fun if you don't have dementia. I think with dementia, we all need to realize that the brain has changes and damage, and it affects senses. Too much light, too many sounds and too many people will guarantee agitation for that person. So you just have to remain sensitive to the fact that those things, perhaps at one time in that person's life, they loved it meant they loved crowds and lots of food and lots of things going on, but that is sure to change with dementia. Building in rest times, there might be a place in your home where the person with dementia can just take a break from the fun chaos. So maybe there's a Barcalounger sitting in a different room and just that break can really help. Photo albums, I found very helpful with my mom. It doesn't have to be long, it doesn't have to be thick and big, just grab a few pictures, organize them, and at the bottom of the picture, put the name of the person or people who are in the photo, and that person with dementia can sit there and enjoy that photo album. I found it extremely helpful. You just have to redefine your concept of what is a successful event, and if you found that there was some joy and some creative happiness that happened during that time, then consider that a success. Okay, Steve, talk about the importance of routine over tradition.

Steve: 4:57

Yeah, this is a tough one, because I experienced a little of both, and we- I'll get to that story in a second- but routine can be as simple as getting up in the morning and going to the breakfast table, eating breakfast, putting the dishes in the sink. This gives your loved one a sense of control. That's what it's really all about when you talk about the importance of routine and when the routine gets off, stress increases. Stress increases for your loved one, and also increases for you, because you feel that stress from your loved one. So instead of making the tradition a priority, focus on the routine of the process. So, you know, if you'd always had Christmas dinner or birthdays were always at a certain time at dinner, maybe you switch it up to a time that's better for them. I think that's really critical. And also be aware of sundowning is a problem, especially when you think about doing events later in the day. So we talked a little bit about this already, about too many people, and I think this is also true here in terms of having the whole family. Somebody suggested, well, maybe you even break up a party, you know, especially Christmas, you could have something one day and something the next day. Who cares whether or not it's on the 25th and the 26th or the 24th and the 25th? If it's broken up and they can handle it better that way, that's a great idea. So try and maintain familiarity, and this will lead into my story, but smells and candles and things like that are valuable. Singing is wonderful. In terms of music, even have some familiar music in the background is always comforting and calming. I think that also my story is, don't try and make everything maintain familiarity. In my case, my wife was a Dickens village fanatic. Patty had, I think, something like 40 houses and all sorts of different people. We would decorate every place we could with these families. And so I recreated all of her Dickens families with the help of my daughter. And she was living in a community at the time, and we brought her home, and I was just waiting for her to go, "Oh, look at this and oh, look at that." And it was all something she hadn't seen in such a long time. She didn't remember it. In fact, it was a little intimidating, because we tried one type of scene and another type of scene. So I think this is a good example. We've been fine if we just had a few pieces out instead of trying to do the whole Megillah. I think that's the beauty of making sure that you have some routine and realize that their attention span is a lot less than it would be previously.

Virginia: 7:28

That is so interesting that she did not remember that she used to do that.

Steve: 7:33

And I think this talks just a little bit about routine versus tradition. One thing to remember if you're going out to eat, remember that home is better than restaurant.

Virginia: 7:43

Agreed.

Steve: 7:43

You know, you might like the idea that it's going to sound more special and there'll be a cake or whatever it is, but that's another totally different environment that they're not accustomed to, so routine of doing it at home will be easier and much more enjoyable for them.

Virginia: 7:57

My mom had a reaction in a restaurant one time. We thought it was going to be just fine, and everybody was happy. And probably 10 minutes into the meal, she said, "Well, it's time to go."

Steve: 8:09

Yeah, my experience was we would have special birthday dinners with friends, you know, and we'd have maybe eight people at the dinner, and she couldn't follow the conversation, so she would shut down. And you could just see how unhappy she was and stressful, whereas if we just had maybe two couples, it would have been a lot easier for her to follow. So again, thinking about making it smaller, making it better is a really good idea. Speaking about doing things with friends, let's talk about preparing guests in advance.

Virginia: 8:37

I look back and I think I should have done a little bit more of this. Friends and family can feel out of control, just as much as the person with dementia if they didn't know what to expect and they're witnessing someone who doesn't recognize them. The advice here is to tell your friends and family what to expect for whatever stage your loved one is in. Dementia is a progressive brain damage. I looked up the name of this because I didn't know this, but there's a part of the brain that is responsible for facial recognition, and it's called fusiform gyrus, and that gets damaged, and the person with dementia can sit there and think, "I don't know these people. I don't know who they are." If you explain that to your relatives and your family and your friends who come to celebrate that they may not get recognized, that will hopefully ease the pain that they're going to feel, or the rejection and the hurt if their loved one doesn't recognize them. Be sure to have people when they approach your loved one repeat their names. Either someone standing there can say, "Oh, this is your cousin Alice. This is your uncle, Bob." That relieves a lot of tension for the person with dementia right off the bat, because they don't have to remember that person's name.

Steve: 10:07

So even when other people arrive, like you said, repeating, you could say, "Well, yeah, this is Alice," like you're reintroducing them to the whole group, but you're also reintroducing them to your

Virginia: 10:17

Yes, I think that you will, if you look at the face of the person with dementia, they will have this look of relief that, "Oh, I don't have to remember that name."

Steve: 10:27

Yeah. I often thought about name tags, but then again, it takes some of the personalization off. But it's an interesting idea.

Virginia: 10:35

I love name tags.

Steve: 10:36

Yeah, I remember how many times we're in a meeting and we're going to a group setting. And I know that person, but I can't remember their name. It happens to all of us.

Virginia: 10:44

And you don't want to get caught looking at their name tag.

Steve: 10:48

No. Well, yeah, you can just glance.

Virginia: 10:50

Yeah, you got to learn how to glance.

Steve: 10:51

Oh, maybe that's an interesting idea.

Virginia: 10:53

I know it's true. I haven't really thought about that, but honestly, who cares? And it would just make that person feel so much better. All of us have a tendency to say,"Oh, do you remember when we-whatever fill in the blank- and the person is not going to remember, most likely, what that wonderful event was, and they are forced to kind of fake a reaction. So generally, you tell your guests, don't use the

phrase: 11:23

"Do you remember?" It would just alleviate all kinds of difficulties if they remember that.

Steve: 11:30

You're kind of bringing up the issue that they're most worried about.

Virginia: 11:33

That's right.

Steve: 11:34

By saying, "Do you remember?" "I don't remember. That's why I have this problem." But yeah, I think that's really great advice, because you can just start by saying, "Hey, was a lot of fun when we did this, this and this," and always remember- sorry- that always remember that their short term memory isn't as good as their long term memory. So if you're going to tell a story that you think they might recall, you could certainly tell something that might be further away in your relationship, rather than something that happened like last week.

Virginia: 12:03

That is absolutely true. My mom grew up down the street from Cornell University in Ithaca, New York, and they rented the third floor to students, and mom could very easily talk about the fact that they had to do the laundry for those students, but she couldn't remember my name.

Steve: 12:21

That's a perfect example. I think that kind of making me another comment about the value of photo albums. If you want to help get your loved one in the mood for a celebration, never a bad idea to bring out a photo album prior to it to get them thinking about how much fun it was and how these people are they care. And I think Virginia made an excellent point. It's great to look at pictures, but I don't remember what the names are, so make sure even the names and where it was, especially older situations.

Virginia: 12:49

Yeah, no, that's an excellent idea. Just those little tips can kind of ease the situation and actually make everybody kind of have a whole lot more fun. If you give your loved one something to do, and also have the guests pitch in a little bit that can help a situation. My mom used to like to fold napkins. Setting the table can be a little confusing, but it wouldn't hurt for them to be given things to put on the table, just wherever, and then somebody else can arrange the silverware. But if they're given little tasks, I think it can help asking your guests to"Gosh, would you mind picking up a pie, some contribution to the celebration?" People like to help.

Steve: 13:36

I think you're really touching on an important issue there, especially for the loved one. They want to be involved. If they're involved, they're going to feel more valued. If everything moves around them and they have no role in any of it, they're going to feel like they're not really included.

Virginia: 13:51

It's true.

Steve: 13:51

And I think you really cover a point. It could be simple things, even in some of the preparation of some of the meals, because, least in Patty's case, she had all of these things written on cards. So even if it was discussion that Casey and she were having about making something together, she could be reading what was on the card and contributing to the process for Casey who was actually doing the cooking. So there's lots of ways to keep feeling like they're valued.

Virginia: 14:17

Absolutely, getting good at monitoring for signs of fatigue or stress. I could always tell when mom was getting stressed. She fidgeted a lot. She fidgeted with her fingernails, and she never did that before dementia. So little things. Just look at their face, if their face looks like they're not having a good time that little break of going into another room or just having a little rest somewhere else, can refresh them, and they can be ready to come back and enjoy the celebration, taking a break if needed.

Steve: 14:57

Especially if you're the primary caregiver, you're going to have a greater sense of what's going on with your loved one in these situations. I recall, as I said, being out many times for a meal with friends, even at their home. And of course, they're assuming everything is just natural. As Virginia said, I don't think I did a very good job of briefing them, and we got there, and they're carrying on a conversation and a speed with which the conversation is occurring. And Patty couldn't keep up, so she tuned out. So I think that you have to think about how you have to slow things down, slow things down for them and slow things down for yourself. What's the rush? It's not like we have to get it done and we can cover less and have more fun and make it simple. I love your suggestion about doing things while you're together that makes it fun, and the more stuff you do that, even if it's silly, stuff, like, you know, blowing little tootors, or putting a hat on your head or whatever it might be, make it festive like that.

Virginia: 15:55

I know traditions you kind of want your celebration to go like the successful ones always have before. But for this situation with someone with dementia, it's not going to be the same, so you have to just go with the flow.

Steve: 16:12

Yeah, and you know as it's going along, you can sense that it's done. I think Virginia made a really good idea about taking a break to see if you can recapture it, but sometimes you'll see that your loved one just isn't participating any more, can't keep up or just shutting down. So a break becomes purposeful. But let's say you planned on a dinner that was going to be two or three hours together, and all of a sudden it was apparent right after the meal that it was over. It's okay. Yeah, and make everybody aware in terms of the preparing, how she's doing, or he's doing, and how they're feeling. And the key is that they come away from this experience in a positive way, rather than feeling like, "Oh my gosh, this was just terrible."

Virginia: 16:53

Right, you want to look back and think we had a joyful, successful celebration, and we just had to go with the flow.

Steve: 17:01

Well, how does that relate to the person who's actually doing the planning, and what do they have to worry about?

Virginia: 17:08

I was going to ask you, Steve, I think you came up with some good ideas on prioritizing self care.

Steve: 17:14

Well, I think self care is, you know, critical. You need to make sure you are less stressed going into these arrangements, and if you're excited, you're anticipating that it's going to be wonderful and if you build your expectations way up there and all of a sudden it doesn't happen, the stress that you're going to feel,like the food wasn't ready on time, or someone showed up late, all of these things, you have to adapt and go with the flow on these things. And reducing your stress in terms of getting prepared, getting a good night's rest, making sure you're exercising. You don't want to run into one of these celebrations and be exhausted. If you came off a flight and you're running into something, you got to take time for yourself. Of course, that goes for any situation, really, but especially for a celebration that you want to be special.

Virginia: 17:58

It's true. Just see if you can take a break and go take a walk, either before or after. That will help.

Steve: 18:05

I do this discussion about, how do you deal with stressful situations while we're talking about it, and I remember learning a technique about literally excusing yourself from a conversation. Patty would be asking me questions for the umpteenth time, and I would say,"Ah, excuse me, I need to go to the bathroom." I didn't really need to go to the bathroom, but it gave me that mental break so I didn't get upset or angry about the fact that she was doing it. Those are the kind of things that you can do that really help.

Virginia: 18:34

Yes, good advice. Well, Steve, what do you think, did we forget anything?

Steve: 18:40

You know, I think one thing we could talk a little bit about is not being fearful about these celebrations and how meaningful they can be for your loved one, as well as your- especially your intimate family,- as long as you don't set expectations way too high, it's an opportunity. And in Patty's case, she was in a community, and I brought her home, thinking this was going to be just like all the Christmases we'd had. So my expectations were sky high, and it was a disappointment. And actually, it worked out pretty good when I reflected on it, but I expected like I said, she was going to recognize all the work we'd put in and how excited she was, and that were all her favorite meals. Really, it was a good time together, and that's all that really mattered. So kind of realize that it can't be everything that you used to have. It can be, as we said, routines are more important.

Virginia: 19:34

That's right, very good. Well?

Steve: 19:36

Well, let's just kind of wrap up by saying thank you, Virginia. She put a lot of work into all these questions, as usual, and you know, it's a great time in the year. And just look forward to taking advantage of it, enjoying it. And we hope you'll tune in for future podcasts. We always look forward to that. And if you have any tips that you'd like to send to us about topics we should cover, we'd love that.

Virginia: 19:58

Love that. Thank you very much.

Steve: 20:00

You're welcome. Thank you. Spotlight on Care is produced by the University of California, Irvine, Institute on Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast. Wherever you listen for more information, visit mind.uci.edu.