Virginia and Steve speak with Dr. Galindo, who cared for her father with Alzheimer's disease and helps the listeners understand the importance of simplifying the holidays to maximize enjoyment for everyone. She gives tips on focusing on one or two traditions and recruiting help instead of trying to balance caregiving with all of the pressures of maintaining family traditions. For more caregiver resources at the holidays and throughout the year visit www.alzoc.org or call the helpline at 844-373-4400. Happy Holidays!
Virginia and Steve speak with Dr. Galindo, who cared for her father with Alzheimer's disease and helps the listeners understand the importance of simplifying the holidays to maximize enjoyment for everyone. She gives tips on focusing on one or two traditions and recruiting help instead of trying to balance caregiving with all of the pressures of maintaining family traditions. For more caregiver resources at the holidays and throughout the year visit www.alzoc.org or call the helpline at 844-373-4400. Happy Holidays!
Steve O’Leary 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 Naeve 0:23
Welcome to Spotlight on Care. I'm Virginia Naeve, and I'm here with my co-host, Mr. Steve O'Leary. Today, we have a guest with us who can tell us all how to have less stress during the holidays, and other celebrations when you're caring for a loved one with Alzheimer's or other dementia. Before we get started, Steve, and I like to kind of chime in a little bit on our own experiences about the topic. And Steve, do you remember anything you did to make the holidays or perhaps a birthday celebration, more enjoyable or less stressful for your wife, Patty.
Steve O’Leary 1:03
Christmas, in particular was probably not unlike other people Patty's favorite holiday by a long ways. And there were certain things that she'd acquired over the years, many, many things from our early marriage, and you know, things. And when I brought them out, we got to the point where she really couldn't decorate the home. But one of her special favorite things was Dickens villages. And if you've ever seen those, you know, they're there. It's like, adult doll houses is basically the concept. And so I brought those out, and she was fascinated by them all over again. And she recalled them because it were things that she'd had for 30 plus years, you know. And so it was a very, that was the way to kind of activate her positive memories. And so, you know, she was back into just being a very happy because it rekindled positive memories for her.
Virginia Naeve 2:05
Wonderful, wonderful. I'm glad you commented about something on Christmas, because I'm going to comment something about a Thanksgiving that we had. I remember, mom's assisted living community always put on lovely holiday meals, not on holiday day. So they didn't interfere with family things. But they prepared a Thanksgiving celebration and meal at mom's place. And my brothers were there and we brought mom down to the dining room and sat her down and, and I looked across at her and she folded her arms. And she said, “Well, no one told me this was going to happen”. And I, I looked at her and I said, “Mom, I've been telling you this for weeks”. And she said “No, you haven't. I can't believe no one told me about this.” So great. We're off to a good start. So we ate our meal, the food was delicious. But she wasn't happy. And the chef came over to our table, which I thought was lovely. And he looked at mom and he said, “Well, how is everything? “And she looked at him and crossed her arms and said, “No one told me we were going to be doing this.” And he looked at her and he said, “Oh, that's terrible. We should have told you. Oh, I can't believe we didn't tell you.” And I looked at mom's face and I saw this this sign of relief that she had that someone knew what she was talking about. And I Okay, that was lovely man. I thanked him later. I learned something that day, I learned normally my mother would have loved every bite and loved the decorations. But with dementia, things were now different. And I had to get a grip on how holidays we're going to be a little bit different. Okay, so right now it's time for me to introduce our guest. Her name is Dr. Miriam Galindo. She is a licensed clinical psychologist, a licensed social worker and registered nurse with over 30 years of experience working in a variety of outpatient and inpatient mental health settings. She holds a doctorate degree in psychology to Master's degrees in social work and nursing and currently is a second year doctoral student in nursing. She shares a private practice with her husband, Dr. Galindo. She's also a former long-time caregiver for her late father Henry, who was diagnosed with Alzheimer's disease, so she knows what she speaks. Dr. Galindo has been a proud volunteer for Alzheimer's Orange County since 2016. And was honored with their Visionary Women Caregivers award in 2020. Welcome, Dr. Galindo. We're glad you're here with us today.
Miriam Galindo 5:23
Thank you. It's an honor to be with you today.
Virginia Naeve 5:25
And I'm glad you're here. This is an important topic this time of year. But I think about, I think the things you're going to talk about can be used throughout the year, not just holidays. Let me start by asking you how we should keep our expectations realistic for holidays and celebrations. How do we do that? And why is that so important?
Miriam Galindo 5:49
Well, you said something just a little while ago, that's important. The concepts that we learned that are applicable to the holidays are also applicable to the rest of the year. traditions in themselves are a good thing. They stabilize us, they remind us of our roots, they unite us, they build connections, they reinforce this collective identity. And, you know, no matter what changes are going on around us. Traditions are always that constant that connect us with previous generations, right? And they remind us of this excitement, and this storybook magic that we had as kids, caring for a loved one with dementia is kind of the opposite. There's a lot of uncertainty. There's a lot of ambiguity, you wake up in the morning, and you think is this what's going to happen today? And sure enough, it's not. Right, right. And right. So trying to connect the constancy with the lack of certainty is really important because it grounds us as caregivers, and grounds your loved ones with dementia. So tradition, routine is very, very important. The problem is, I think that when we try to recapture these traditions that have gone on for generations, sometimes we try to include everything, and we lose the quality for the quantity. And so I think if I were to capture an answer to your question, in a nutshell, I would say, strive for quality, rather than quantity. That's how you're going to keep things realistic. Don't try to do everything, and be open to building new memories. Focus on something that's of meaning, rather than focusing on trying to get as many tasks completed in one day. And you're going to surprise yourself at how memorable this year might be compared to previous years.
Virginia Naeve 7:44
I know a lot of us just go crazy. On holidays. Yeah, getting ready. And that doesn't help a person with dementia at all.
Miriam Galindo 7:51
That's true, and it doesn't help any human being
Virginia Naeve 7:55
No it doesn't!
Miriam Galindo 7:56
Right!
Virginia Naeve 7:59
Well, that kind of leads me into my next question for you. I know I'm not the only one with a zillion holiday traditions. But how do we handle family traditions if they might cause stress? And how do we know that they're going to cause stress?
Miriam Galindo 8:13
Yeah, it is. Sometimes you're learning as you go. But if you if you recognize that prevention is the key to, you know, a chaotic or aggressive moment, you can predict some of these things. So I'll give you some tips. The first is lower the chaos. Before you even begin your holiday, keep in mind that your loved ones are experiencing brain changes that affect their brain’s interpretation of the world around them. So all incoming stimuli is interpreted by your brain, sights, sounds, the tactile, the feel of things, the olfactory senses, your sense of smell, all of that is interpreted by the brain. So if you have too many lights going on at once too many sounds too many people, too many people trying to have conversations, you can guarantee that your loved one is going to get more confused and more agitated, the ability to even discriminate what's important and what's not, is brain related. So if you've got Larry who's talking loudly to his friend, and you've got Mary over here, who's talking softly to Mom, it's going to be very hard for mom, presuming she's your loved one, mom to then be able to filter out what Larry's saying and just pay attention to what Mary's saying. So we have to keep that in mind. Second, like I said before, focus your energy on one or two traditions that are most meaningful. I mentioned before the dementia carries a lot of ambiguity and uncertainty. So recognize that going in. That's one of my prevention strategies. Just know that what used to take you five minutes is probably going to take you half An hour and build in plenty of, you know, ample time for things not to go as expected. Build in the potential for you needing some time to rest or your loved one needing time to rest. Build in that the ovens not going to work. Building that the cookie recipe that you've been making forever doesn't seem to work out this year. Just know, it's, that's the way it's gonna go this year. So focusing your energy on just those traditions and then providing yourself ample time. So two traditions
Virginia Naeve 10:31
keep it to one or two really meaningful traditions.
Miriam Galindo 10:35
Yes, which by the way, you're going to find that your holiday is more meaningful. When you're focused on too many things, you get so scattered that you're not able to take in the joy and the peace. When it's one or two things you think you're going to miss it, the rest of the stuff you really don't. Which then leads me to my third tip, which is redefine your concept of success. So you and I, and maybe everybody that's listening will say success means how many tasks? Can you complete in one day? Yes. Yes. Isn't that delightful? Just go into those little boxes on the left hand side. Done-done-done-done. Yeah, you feel like you change the universe for good. But when you're caring for somebody with dementia, success means more joy than not? Did we reduce anxiety and fear? If you do that, in any given day, you have achieved much. If the laundry isn't done, who cares? Ultimately, we have to redefine our own concept of success. Because that in itself can get in the way of us, you know, experiencing joy in the holidays. So you get this good checklist, oh,
Virginia Naeve 11:55
I live with lists.
Miriam Galindo 11:59
Glorious!
Virginia Naeve 12:01
I live with lists. And if I don't write something down, I'm in real trouble. But there's some days I have 15 things on my list. But tone it down,
Miriam Galindo 12:11
Tone it down, tone it down. Yeah. And you know, all of us caregivers know we go in with a list and guess what happens? The list is modified. That's the way life is when you love somebody with dementia you think you know what you're going to be doing in a given day. And your loved ones going to hand you something you didn't expect. And, you know, that's actually quite a blessing because it improves our sense of flexibility and gives us creativity. But they we learned
Virginia Naeve 12:42
We learn different ways to be in control.
Miriam Galindo 12:44
That's right. That's right.
Virginia Naeve 12:46
My mom, we belong to a, we had a group of friends that were basically her friends. But we had lunch group every month. And I remember the time we went there, it took me an hour to get there. I mean, with traffic and everything. And we were seated for no longer than 10 minutes. And mom looked at me and said, “Well, time to go. What?”
Miriam Galindo 13:11
Yeah. There you go. A great example.
Virginia Naeve 13:16
So you got to be flexible.
Steve O’Leary 13:18
Dr. Galindo, I’ve got a question. Yeah, I think you're saying something that I hadn't thought about which is lowering your own expectations. I think that we get so excited that we're going to be reintroducing all these historical traditions. And when our goal is, oh, my goodness, this is going to be the best thing that could possibly happen to our loved one. And lo and behold, your expectations are never met. I mean, they have lower your own expectations. And lo and behold, you will have a better time and guaranteed your loved one will as well because you aren't you're only expecting that they're happy. And whatever happiness they have. That's your happiness.
Miriam Galindo 14:01
Yes, exactly. You got it.
Virginia Naeve 14:04
Perfect Point, Steve. Okay, let's talk about the importance of routine and perhaps creating and building new memories. I do remember that when I mixed up mom's routine, it turned her upside down. It didn't matter what it was a celebration, a trip to the hospital, whatever. A good thing or a bad thing. If it was out of her routine. She was upside down for probably two weeks. Tell us the importance of routine and creating new memories.
Miriam Galindo 14:38
Yes. So routine is vital and what you brought up a Virginia about, you know, your mom goes to the hospital and takes her two weeks to recalibrate. That's very true. And if we you know, from an empathic standpoint, if we recognize that the parts of the brain that are responsible for explaining meaning to oneself, hey, we're in the hospital temporarily this is what's going on. Those are affected by the disease. What seems to persist is that craving and that ability to, you know, that core capability of recognizing patterns. And patterns could be as simple as I get up in the morning, I go to the breakfast table, I pull out the newspaper, whether I fold it, whether I read it or not as irrelevant, I fold it in half, then I get up, then I go over here, then I fold the laundry. Those routines give your loved one a sense of control over the environment. And neurologically, it's just, as we talked about before, we human beings crave control when things are out of control, which is why we love tradition so much. When things are out of control, it creates stress. So for your loved one, when the routine is off, it creates stress and then trying to recalibrate and reorient is pretty difficult to get back into the swing of things. So think of it this way psychologically routine is giving your loved one a sense of security just like it does with us. And it gives an enhanced sense of control. So what does that mean in terms of holiday traditions? Well, it means that instead of making the holiday tradition a priority, you want to make sure that the traditions are built around your loved one’s routine. So what does that mean? That means scheduling the holiday activities around your loved ones daily routine, preferably when he or she is most alert, and most awake, avoid maybe the times at night where your loved one might get more confused. There might be a proneness to what's called sundowners, which can lead to some agitation that will make everybody quite upset, including your loved one. The second thing is minimize exposure to too many people at once. That is a deviation from routine. Yes, in the past, maybe your loved one could handle big crowds. But like we said before, their ability to filter out competing stimuli is compromised by this brain disease. So if you want to see a lot of people, break them into groups, you don't have to see everybody at once one group can come in for lunch, then they leave, then the other group can come in for dinner time, an early dinner time. You can do zoom calls. And you want to, again, this is going back to what Steve reinforce that your own perceptions of what's considered successful. Recognize that increase confusion, agitation and frustration in your loved one is not them trying to ruin your day, or trying to, you know, ruin the holiday spirit. It's that there's too much going on at once. So it's a clue. It's a clue they can help overwhelmed. Yes. So you might see your loved one even wandering off into the backroom because it's just too much. So that so you try very hard not to take it personally. So another, you know, conceptual thing that we ourselves had to tackle. I have two more ideas. So the third idea that maybe we'll have more time to elaborate on in a bit is preparing your loved ones, your friends, your family that are coming in for visits, what to expect and what's expected of them. That's a good way to plan ahead of time so that you're not dealing with chaos in the middle of a crisis. So again, that preserving the routine by making sure everybody else can dance along with your loved one, rather than expecting your loved one to dance according to their themes and their rhythms, metaphorically speaking. And then the fourth thing that I can think of is maintain familiarity maintain familiar sights and sounds. We talked about that brain's craving for desire, you know, for patterns and routines. And ironically, the dementia process spares that so we need to capitalize on that. Which means any kind of delicious smells that we can bring into the household, go for it. And you don't necessarily need to make cookies. You can actually go buy yourself some candles, the candles a smell just like pumpkin pie Thank goodness for these creative inventors and even room spray that smells like Christmas cookies and you can sing the other miracle that that dementia has, you know uncovered is that there's a brain area in the brain that spared by the damage of dementia. That's the area of the brain responsible for recognizing familiar music. It's in the anterior temporal lobe. And some of you caregivers have already seen things on the internet about how loved ones with dementia just come alive when they hear familiar music and holiday music is so familiar. It is built into our DNA, I believe. So whether you're playing the music, or whether you're singing along, what a wonderful way to bring in that traditions and that holiday spirit, but also to wrap it around the existing traditions and routines that your loved one needs in order to feel like they've got some control.
Virginia Naeve 20:49
right not to overwhelm, can do, you know, with loud music everywhere, but maybe it got some of you getting together and singing. Yes, familiar song.
Unknown Speaker 21:00
Yes and listen, sometimes, you know, we caregivers can say, well, you know, they've lost their ability to express themselves in words, or they, they can no longer follow along by reading words on a page. But I would challenge you go ahead and do it anyway, print out the words, you know, type it all up, put it in big print, hand it out to your friends and family, including your loved one. And, you know, turn the pages so that they have a sense that they're included, they may not be able to sing along. Maybe they've lost their expressive abilities. But they can hum, they can nod their head, they can snap their fingers, they can clap their hands. There's a lot to kind of involve your loved one in this process. And again, bring those traditions in, wrapped around their need for routine, sameness and their aversion to change.
Virginia Naeve 22:01
Right. Right. Oh, that's wonderful advice. Yes, my mom loved seeing Christmas songs. And she just came alive. And she would remember things that I thought were long gone. Yes.
Miriam Galindo 22:19
And that seems to be pretty universal, even in the severe stages of dementia, that there's this ability to perk up and recognize the music that's been sung, right? And listen, whatever way to incorporate them into that singing is just you will be you will be moved at how your loved one will fall along.
Virginia Naeve 22:43
I didn't. I don't think I was very good at saying to my mom's friends. Okay, now you've got to limit your time because she's going to be overwhelmed. I can't have too many of you here at one time because she'll be overwhelmed. What advice do you have for people like me who hesitate to do that?
Miriam Galindo 23:01
Yeah, well, first, show yourself some mercy because I think we who are good at caregiving to begin with are also very bad at accepting care from other people. Right? We're the ones that, you know, oh, you've got 50 people that want to come along. Great. Well just pull up more chairs. Yeah. I know, Virginia. So it's really hard for us to then say, “I'm sorry, no.” Because no doesn't exist in our vocabularies. We say, “yes, yes, yes, yes, yes.” Which makes us wonderful possibilities, thinkers and, you know, innovative creators, but terrible when it comes to say “no.” So you're you, we have to shift our own thinking again. And recognize we're not necessarily saying no, we are being just very good CEOs that are managing a big team of experts. And what we're doing is recognizing the strength in our team members, and giving them jobs that correspond with their strengths. And so the way I see this is figure out not only what to direct but how. So by what I mean, is telling your friends and family what to expect and what's expected of them. I mentioned that before, I'll say it again, it's, as we talked about before, that brains need for control when you're dealing with something as complex as dementia, where there really are no answers and there are no cures. And the progression is different from one day to the other. Keep in mind that friends and family are feeling helpless, and they want to feel a sense of control. So you're doing them a big favor. When you say listen, I'm going to tell you what to expect. And I'm going to tell you what you can do about it. So you're validating ahead of time, this is what you're going to notice You give them instructions on the best way to respond. So I've got a great example of that, that I think about a lot because I did it with my own family. Dementia over time will affect every part of the brain as we know, it's progressive brain damage. And one of the parts of the brain that affects is a portion of the brain called the fusiform gyrus. And that area is responsible for facial recognition. So imagine you've got people coming in from out of state who haven't seen your loved one in quite a while. One of the things that often happens is they're crestfallen when your loved one appears to not recognize them. Or turns to you. Virginia andn says Who is this? And they're devastated. They say, she doesn't recognize me. Well, what a help you are to say, Listen, this is what you might see, you might see that mom doesn't recognize your face anymore. Don't take that personally. It's part of the disease process. And you give them an example. And then you say, this is what you can do about it, you're going to go right in front of their line of vision don't come from behind don't come from beside because perspective is, you know, the peripheral vision is narrow during the dementia process. So go right in front of them, and say, “Hi, I'm Virginia, I'm your daughter.” And put your smiling face right in the middle in the field of vision, and say, “I'm so happy to see you today.” Well, you've just given them a tool that's going to save the day and eliminated a lot of guesswork. And you're going to have that loved one. Enjoy your time. Steve, you you've seen that touched a memory for you. Hmm. Yeah,
Steve O’Leary 26:53
I was just remembering a tip I got a long time ago, a phrase we all use at any kind of holiday is, “Don't you remember or Do you remember?” That phrase is the wrong phrase for someone with dementia? You just start off with the story. And the story either brings it up or it doesn't. But you do the word Oh, do you remember and then when the person doesn't, then it hurts. And I think everybody else the expectation again, is that they're going to remember it. It's a phrase we commonly use, especially around gatherings. So anyway, that was a tip somebody gave me and I briefed people, especially my kids, not to say that when they were around their mom.
Miriam Galindo 27:41
That's right. You know, there's a misconception sometimes that dementia is just a process of forgetting you forget this, you forget this, you forget this. And so all you need is a little helpful reminder to remember something and it really isn't. That is it's progressive damage. And so you're right to be reminded again, and again, don't you remember this? Remember this? I just told you that, don't you remember, it's painful. And you'll see your loved one, literally banging their hands against their foreheads trying, or at least feeling devastated that No, I don't remember. So it is it's a gift to your loved one is a gift to yourself, and it's a gift. Most importantly, because we're all caregivers, for those you love in terms of friends and family, give them something to do, it'll give them a sense of control. You know, besides the what though, there's also the how. So you want to think ahead of time and tell your friends and family, how they can pay be helpful to you. And to that, you know, get gathering they get together. Don't just let them guess. And this is another difficult task for us, caregivers, because we usually take care of everybody else. And we don't tend to put pressure on anybody else to do things. But if you leave them guessing what they can do to try to help which by the way, they're going to want to do when they feel this helpless. It'll just raise their own their blood pressures. So you help them by giving them something to do and this is where I said
Virginia Naeve 29:19
Folding napkins, Anything.
Miriam Galinda 29:21
Yes. So you're going to be the CEO that's going to recognize the talent in your team. And you're going to say, you have great folding abilities. I need when you come at five o'clock. I could really use you, you know, decorating the table because you're so good at that. Right. And then could you bring that wonderful pie that you made five years ago that was to die for. And then Mary, could you do this and George, could you do this and you know you they will love you for it because you're
Virginia Naeve 29:54
it's really true. People want to be helpful. Don't tell them how they don't know how some Yes,
Miriam Galinda 30:03
That's exactly right. And it listen in the face of dementia where most of us are feeling helpless at what we're seeing in the progression at the, you know how things are transpiring. It gives this family a sense of cohesion, it gives friends a sense of cohesion and oneness. We're all in this together. And that in itself can make a tradition just push it over the top as far as it being memorable, pleasant, peaceful, full of joy. Because everybody felt like they were connected that day. So you're, you're doing a good thing.
Virginia Naeve 30:39
Wonderful, wonderful advice, really important tips and thoughts about making holidays, just what they should be. They shouldn't be full of stress, they should be a good memory for all involved. You have any last comments, Steve, before we wrap up?
Steve O’Leary 30:59
Ask the doctor if she recalls a memory from her own holiday experience with her father that that she'd like to share.
Miriam Galindo 31:11
Yes. And it may have been the same Christmas that the oven wasn't working. So my husband ran out. And being the jokester he is came back with corndogs. And we just thought my mother thought that was the worst possible meal, we thought it was a riot. But that same holiday, we decided to split up the day, which a lot of us caregivers decided to visit dad, one part of the day and then we come home and we do a different, you know, a tradition with the others. And we're able to kind of split that up so that he's not too overwhelmed. And what we did during his final month, two months of life, it was two months before he died, is I typed up the holiday songs like I had done every single year. I put them in his hands even though he was bedridden at that time, and he was not even able to smile, you know. But we turned on Bing Crosby, and we sang and sang and sang. And listen, I'll tell you even though he has, you know, movement was so restricted, he was still tapping away with his right hand. His toe was keeping time, he was still in there. And I just want to, you know, reinforce that for all that are listening. Besides just recognizing that quality is where it's at. Remember that the essence of your loved one is still in there. He or she, she is still in there. And that can bring joy for years to come. Because, you know, we can see each other now and smile at the memories we have. But I'll tell you that is one of my best memories.
Virginia Naeve 33:01
Yes, it is, isn't it? Yes. That's one of your wonderful, wonderful memories of your father. Yes. Well, we can't thank you enough for being here with us today.
Miriam Galindo 33:11
Oh, it's my pleasure.
Steve O’Leary 33:13
You were great. Absolutely phenomenal.
Miriam Galindo 33:15
Thank you. Thank you. It was wonderful spending the afternoon with you too.
Virginia Naeve 33:20
We're glad you took the time to give us some great information. I'm sure the listeners will really appreciate it especially this time of year but all through the year actually. And join us again soon for more helpful tips and information on caregiving someone with Alzheimer's or other dementia.
Steve O’Leary 33:37
Spotlight on Care is produced by the University of California Irvine. Institute for 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
Transcribed by https://otter.ai