Rayna Neises: 0:00

Teepa always says, “We want to do it with them, not to them.” that is such an important statement when we think about caregiving. When we’re doing it with them, we’re in this together. We’re not startling them. We’re not forcing them. We’re helping them to see options and, opportunities, and that changes everything. Welcome to A Season of Caring Podcast, where there’s hope for living loving and caring with no regrets. This is Rayna Neises, your host. Today I have co-hosts Carlos Olivias. Carlos has been the primary caregiver for his dad living with Alzheimer’s and I invited Carlos to have a conversation with me to discuss those challenges that we run into with the changes of behavior and moods as the disease progresses. So we’ve both lived that Alzheimer’s walk for quite a while now. And Carlos, I’m excited to have you here to just talk about some of the things that you’re finding that are working well with your dad. Kind of share with our audience a little bit more about some strategies beyond medication.

Carlos Olivas III: 1:01

Well, good morning. It’s good to be here. I’m excited about about being on this journey because it, one, it helps me kind of become a better human in a way. I’m learning about myself more than I learned in the previous 50 years of my life. And you know, it’s never too late to maybe correct and change directions especially if you are attending to a parent that’s going through a life struggle like my dad living with Alzheimer’s disease and it’s a, it’s a challenge. One to ground yourself and understand that it’s important to give back to family. To really, I guess, have a connection that’s nurturing and providing the strength to endure. Family, is a institution, you know, it’s been part of humans since the beginning of time that’s been noted and it’s always been like a tribe. It’s always been kind of like, this group that traverses the adversities of the universe. So being here, being present is one things that I feel is needed in providing Dad the best care he can have.

Rayna Neises: 2:30

I agree. People often ask me about, well, did your dad know who you were? Do you get that question a lot?

Carlos Olivas III: 2:37

Yeah. You don’t tell like, yeah, he knows who I am. And I’m pretty sure he’s going to know me for a long time. Even if he can’t say my name or, kind of recognize me. I’ll be able to, you know, whisper into us ear, hold his alarms, and know that he is being surrounded by people that love him and care for him. And I think over the last few years I’ve been recognizing that he senses that. And if I can keep on injecting that positivity, that comfort for him to kind of embrace that we are here for him. That he’s not alone and he should not be afraid to live out the rest of his life.

Rayna Neises: 3:22

My mom was nonverbal for, I would say eight years of her journey, but there was always that recognition and I will never forget one time. I came in the front door and just yelled,” Mom I’m home.” Like I did for a million years before that. Right? Not a million, but you know, a lot of time before that, and I could tell by the look on her face that there was recognition to my voice. Now my face didn’t connect to the voice in her mind, but there was definitely recognition and all the way through, I just felt like there’s such a connection. And I do feel like it doesn’t matter if they know your name or not. They know who you are. They know you’re someone significant in their life. And I think that’s so important. It can bring such comfort, like you said, for them to realize they’re not alone. And that connection really does continually reinforce that because when you look at what’s happening in the brain, It’s pretty scary. I mean, I can imagine it has to be pretty scary for them.

Carlos Olivas III: 4:22

That fear, that sense of fear, that isolation, being afraid of themselves, not knowing what’s going on, what’s the surroundings. I sense that with my dad, just by observation that, you know, at one point he was trembling. And I’m not sure if it was trembling because he had a hard time standing up or he was scared because he was in a very strange situation or, the intensity of what the environment was. Being in a clinic area during COVID of all things, it was just, it’s like, oh my goodness, this guy is really afraid. And that causes agitation because he doesn’t know how to convey it otherwise. That really knocked me down. I had to figure that out. I had to cope with that. I had to talk to a therapist about that. I had to, you know, talk to other caregivers to understand how to develop strategies to protect myself so I can be emotionally strong for my dad. And those things are a hard lesson to learn and to develop a skill that helps you through those process.

Rayna Neises: 5:47

Keeping that strength and that consistency, that rock for them in those really scary times is really important. But at the same time, what you’re saying is that it is important for you to find how you could do that because you were rocked in that situation. You don’t want to show that to him. You want to, to continue to provide the support that he needs. So that’s important as a caregiver to find how you can stay as even keeled as possible. And I think that’s one of the biggest challenges with being a 24/7 caregiver without time away. You don’t have that time to refresh yourself to reinforce yourself to really give you what you need in those moments that you need to express your own emotion. And that’s why I think it’s so important to bring that team in. I know you have your daughter that helps you and now have caregivers that are coming in as well. And do you find that that time off the clock has helped you to process and reinforce a little bit more?

Carlos Olivas III: 6:42

Absolutely. Once I leave the home I’m out that the worry is still there, but I feel that I’m able to focus on tasks, focus on myself, with self care I’m able to engage socially with your friends and family or just being out, in nature by myself to kind of ground me, I’m able to do these things. When I have time away, when I do have someone covering my dad, And I’m able to recharge rejuvenate. Some of the things may tire me out, but it’s a good, tiring feeling. It’s like, I’ve accomplished something, you know, if I go to work and I’m on a task and I’m able to successfully accomplish that task without a burning things down. It’s a good, it’s a good day. If I’m able to, get in, a three, four mile walk, and really connect with nature and kind of really let out these frustrations, these resentments that I have built up and able to kind of flush it out and absorb the beauty of, of life, you know, that’s surrounding me. It helps, it helps me tremendously to come back home and then be present for my dad and have an attitude of compassion. I come home and it’s like, hi, how are you? How was your day? And he responds, and it’s all about kind of like your positioning and your body language, the tone in your voice, the eye contact. And you may be maybe just touching his hand and letting him know, Hey, I appreciate you showing me that gratitude that has been afforded. That’s a really kind of a hard thing to do because, some people just can’t get out of the resentment part.

Rayna Neises: 8:42

Yeah and, I think sometimes we can get so focused on all the things that there are to do that we miss the person. And I love, Teepa always says, “We want to do it with them, not to them.” And I think that is such an important statement. When we think about caregiving, when we’re doing it with them, we’re in this together. We’re not startling them. We’re not forcing them. We’re doing it with them. We’re helping them to see options and, opportunities, and, that changes everything. When you think about even how you treat another adults, you don’t do things to an adult. You do things with someone, you ask them, can you want to come do this? Can you help me with that? Those are the kinds of things that you say, but sometimes when we’re caregiving, we shift that and we forget, and we go into this commanding mode or something that puts their hackles up, I think. And that can be a trigger for people.

Carlos Olivas III: 9:34

Yeah, exactly. For me avoiding these triggers is like a foundation for me. It’s like, if I can keep my tongue tied. And not be, you know, condescending or insulting in a way that I used to be. Like me, my dad would have banter, it was like, I would call him out on something wasn’t right. Or, educate him or, try to make a point. In many ways we would argue. And I had to pull back the reins. It’s like, okay, wait a minute. We’re dealing with something different here. He can’t understand my position or understand the intellectual kind of properties that he’s set forth. You know, he’s taught me a lot of things in life. And then when I presented it back to him, He can’t grasp it. His brain capacity is not there. So that was a kind of hard thing to change. But when I would say, okay, come help me change out the faucet in a sink, you know, it’s like, I need help. I’m relying upon somebody with great knowledge of how to do this. Although he didn’t offer any help about it, but it was him being present and having that, I would say like that, like an encyclopedia of how to do things there as comfort for me, it was comforting for me. I was able to you know, do this task and go through all of the the diversity of it, you know, multiple trips to the hardware store, trying to get the correct part or. Other parts, if we find one thing go wrong and then there’s nothing that pops up and sharing with him that agony of trying to make something work. Understanding that he understands where I was coming from. And it was very supportive in a way that I included him in this task, it’s about inclusion and, and, and drawing them in and having them be supportive without them conveying their support.

Rayna Neises: 11:57

Yeah. Without them having to really contribute other than being present and being who they are. Allowing them to contribute when they came. But when they reach that point that they can’t it’s okay. They can still be present and still feel like they’re a part of it. I think one of the biggest triggers that I figured out for my dad was his ball cap. My dad always wore a baseball cap when we left. And so a lot of times when we came home, we just put it on the couch, right by the door that we would go out, have to leave. And so those sundowner times, you know, he’d get that cap on and buy gum, he’s leaving. It was just going to happen. You were not going to stop him. And so many times initially it was trying to talk about it, but look, it’s dark outside. You know, all the reasoning that we try that is futile, it doesn’t help at all to try to reason through the situation. We learned that if he puts the ball, tap on, let’s just go ahead and go get in the car and drive around a bit because that’s going to be the easiest way to handle the situation. The easiest way was to put the cap where he could see it. Right? So though he wasn’t putting his ball cap on and being ready to go. It was so interesting that that was such a trigger for him, that I see my ball cap, I’m going to put it on and we’re going. It was such a simple thing once we figured it out make sure to keep it out of sight, but it was interesting that that was such a trigger. Does your dad have one thing in particular that kind of spurs a behavior that you’ve run into that’s challenging?

Carlos Olivas III: 13:31

Yeah. Keeping track of his remote to his fan in his room.

Rayna Neises: 13:36

Ah,

Carlos Olivas III: 13:37

Yeah, it was like the other day he came out and he was pretty upset and he’s like, I can’t find my remote. And he’s trying to look for the other remote for another fan that’s same, same brand to see if it works, but they don’t, they don’t intermix. So he will hide it from himself or hide it from other people.

Rayna Neises: 14:03

right.

Carlos Olivas III: 14:05

That, eh, he has that fear that someone’s coming in there and messing with it or something. So he hides it from himself in his favorite hiding spot. So I go directly to that spot and then I pull it out and just like, okay, here it is. And he’s like, oh, I was hiding it from myself so I can remember where to put it or something like that.

Rayna Neises: 14:31

Yeah.

Carlos Olivas III: 14:32

and it was like, yeah, I know you told me about it, or at least trying to reassure him that he is okay. You know, and trying to reduce his anxiety because if I say something wrong. That anxiety goes through the roof, and now we’re into heavy agitation where, he’s going to be defensive, combative. He might stand up to me and pose a threat I don’t want, and that’s the scary part. Recognizing those triggers that can be defeating to myself if I’m not careful and it’s not like I have to walk on eggshells, but I have to walk on the water to kind of float and being very, very kind of liquid and flexible to understand where he’s coming from. You have to step into their world. What are they feeling? I don’t know. It’s all speculation but they’re afraid that they forgot something, or they can’t remember that they forgot something or, you know, they, they can’t recall where they put that they know what’s there. That object is there and it’s something that is affecting them in a way that we can’t comprehend. He was hot, he was hot, but he’s, you know, stark naked. In his bedroom looking for his remote, he just wants to cool down a little bit, you know? And

Rayna Neises: 16:07

he didn’t have control.

Carlos Olivas III: 16:08

yeah, he didn’t have control. And that there’s a, there’s an attachment, the emotional attachment that, he doesn’t have control and he fears that he doesn’t have control.

Rayna Neises: 16:18

Yeah.

Carlos Olivas III: 16:19

I don’t, I don’t know how that feels.

Rayna Neises: 16:21

Right. My dad, one of the things that he would hide or lose was his wallet. And I think that was a security for him to be able to have money because he grew up without it at all. And so that wallet was a real security that he could take care of things if he needed to. So he would put it in a safe place and we couldn’t find it. And eventually after one time of just really not being able to locate it. I was like, okay, I’m going to the store. And I’m buying three wallets that look exactly the same. We’re going to photocopy his ID. We’re going to put money in all of them. And when he loses it and we look for a bit and we can’t find then we can, oh, I found it and give him another one. And we did that for quite a while. Eventually they would pop up in the strangest places, but we never knew if we were going to find it soon enough. So being able to have the alternative to relieve the anxiety quickly was definitely something that came in really handy. And so if it’s something that you can have multiples of, it might be helpful. For you as well, but that fan remote, like you said, it’s funny that you have one that looks the same, but it doesn’t work. So I bet that’s even more frustrating for him. I think it’s so important as we look in caregiving that we’re looking at their triggers and we’re learning to avoid those things. But then what you also said was decelerate. Finding a way to bring them back down, even when we can’t avoid the trigger because we can’t avoid all of them. They’re going to pop up here and there. So the things that we found for my dad that helped us to decelerate his anxiety or stress was, walking away and giving him quiet. Not trying to continue whatever it is that triggered. So that might mean we’re going to be late to an appointment because we can’t get out the door because something triggered him before we tried to leave. Or it might mean that he just is tired or he’s trying to do something he can’t communicate and we’re trying to interrupt, our agenda is in front of his agenda. And I think one of the biggest keys to being a caregiver is that their agenda needs to come first. If we’re trying to force our agenda, we’re going to find triggers. We’re going to find pushback. So really making sure that we understand what their agenda is and support them in that agenda. And then the other thing we really found was agitation was just a piece of, it was sometimes was pain was an underlying factor. I don’t know if you and your dad’s struggle with that, but my dad had arthritis. And he wouldn’t articulate the pain, but when he was in pain, he was agitated and everything was harder to accomplish. So we learn to go ahead and get the cream and rub it on that knee and try to see if maybe that was it. It wasn’t gonna hurt anything if it wasn’t right. But sometimes that was definitely a trigger that we could help to alleviate by taking some medication to it. What other things have you found that can kind of help bring things down if he just seems a little irritable or you’re having trouble with pushing buttons. you didn’t know you’re pushing?

Carlos Olivas III: 19:24

Greeting him in the morning time with very positive intention. Like good morning sunshine, you know, just making him feel like he’s welcomed and he is appreciated. Just giving him a great big smile, even if I have to fake it. And I think that sets the tone for that moment and kinda helps me gauge if he may be triggered previously to being present at that time in front of me. Cause he might be in his room looping through some traumatic memories that puts him in a mood. And then he’s still kind of, you know, fuming over that or something. And then he sees us and he doesn’t like it. You know, he’s going to say something, but if I can approach him and say, Hey, good morning, sunshine. He’ll respond to it either in a positive manner or you say something condescending where it’s like, oh, okay, he’s grumpy. Or at least let him kind of sit up by himself for a little bit and kind of figure out where he’s at. Because sometimes he doesn’t, you know I w I don’t want to say he doesn’t know where he’s at. He just doesn’t know where he’s at within himself, because there might be some things that might be going on. He might have a stomach challenge or he might, have a cough or, his nasal cavity might kind of have some pressure. He might have a headache, there’s other things that he may not convey. That I tried to extract from him to understand where he’s at. Sometimes, I get some pushback be a little snarky, but then most of the time he’ll be like, Hey, you know, I slept good. I had a good night. I was in dreamland. I don’t know what I dreamed about but I was there,

Rayna Neises: 21:17

Hey, it happens to me too. So I think reading their facial expressions, reading their demeanor, and then starting to kind of put that detective hat on and figure out what could be the underlying source of their mood. Sometimes we just have moods. Right? And so that’s okay. I think sometimes we expect people that have dementia or that we’re caring for to not be people. And they are who they’ve always been. Some of their abilities have changed, but at the same time, the root of who they are as a person, they are who they were. And so just remembering that sometimes I wake up in a bad mood to and I don’t really know, why, and I’m not really sure how to get out of it. And that’s okay. So just being able to let them be a person

Carlos Olivas III: 22:06

Yeah. I think one thing that’s really helped me is like, if I’m in a bad mood, if I wake up and I’m like, don’t feel like being the caregiver right then and there. I have to go through a series of routines to get me up to a level where I can function as a caregiver. And that reinforces being positive and leading the way for my dad. So he can kind of reflect off that he can kind of absorb it and understand that he’s in a good, safe space.

Rayna Neises: 22:42

Routines are so important. I think they’re important for us as caregivers because they are our self-care many times people think of a self-care as an event or something special that they went and did. I feel like routine is actually one of the best self-care items possible to really start your day in the same way, as much as you can, sometimes he’s up before you and that interferes. But overall, having that routine that helps you to really ground yourself and find yourself in a place of being ready to serve him. I think the thing that came to me this last week was just that we are also in charge of the person that we’re caring for, of their self-care. We are their caregiver that’s where the word comes from. But sometimes we think of all these outside things and we don’t think about the things that brings us comfort and bring us strength will do the same for them. And so really looking at understanding what they did for themselves, what their routines were. For example, my dad always showered in the morning. Well, if I tried to change that because it wasn’t convenient to me or because there wasn’t a caregiver there that’s going to cause problems cause I’ve changed his self-care routine. So really finding and figuring out and watching what their routines were and then helping to assist them to continue those routines, I think is really important.

Carlos Olivas III: 24:04

Yeah, absolutely. That’s why I kind of find developing or at least adapting and improvising some routines with my dad to get him to have his own routine is important. Getting him to, have a shower routine. It’s ongoing, it’s developing, we are honestly navigating that on a bi-weekly basis of getting him to the shower and then and building that muscle memory that he can understand, oh, well, it’s time to take a shower. He’ll feel that, he’ll understand, ah, maybe it’s time to take a shower or, you know, on the days, day we do establish a shower routine. He’s already getting up thinking, oh, shower day, it’s like, it’s part of his, his muscle memory. It’s not like in those, it’s not just a memory it’s muscle memory. It’s building that connection that, that emotional connection with the physical. And he understands that, oh, shower time, at least from my observations over the last few months or something, it’s starting to develop. And it’s taken a while for it to kind of sink in. It’s just being repetitive in the routine and creating that structure and that system that kind of develops in many ways, it’s not like he’s a slow learner. He’s just that he’s adapting at different pace with this disease. And it’s something that we’ve had to take on with compassion and empathy. And that’s kind of like really hard to kind of really sort through because you have to let go the frustrations and the resentments and kind of promote good, healthy hygiene. You have to some way that’s promoting good, healthy hygiene to something like that. So here’s an example. But you know, I have to leverage techniques and methods to create these structures and systems. And that’s the routine starts to starts to develop.

Rayna Neises: 26:20

One of the things we found really helpful was just going back to when he was doing it himself. What did that routine look like? And trying to keep that routine as much as possible. And like you said, adapting is part of what has to happen. As barriers get in the way it’s finding, how can we work around that barrier? And one of the barriers we ran into was my dad hated being cold. And the older I got the heart cold, he seemed to be. And so we found that a space heater near his bed, we could. Toast him up to a point that he would get out of the bed because it was warm and cozy under all the blankets and everything and so he wanted to stay there. Well, when we got the room to a temperature that it wasn’t as comfortable to be under the covers, then it was like, okay, now I’m ready to, Oh, I can poke my toe out and it’s not freezing outside of the bed. And so it was easier for us to get him going in the morning was to go ahead and turn up that space heater and get it really toasty in there. And then he was willing to not only get out of bed, but get undressed and get in the shower. Until we figure it out that that was the barrier. We didn’t know how to adapt, but so much of what we’re doing as caregivers is really just investigating and trying and seeing what we can think of that might be in the way and then figuring out ways to adapt it.

Carlos Olivas III: 27:35

Oh, I think finding the root of a problem

Rayna Neises: 27:40

Yeah,

Carlos Olivas III: 27:41

is a key to kind of understanding what may be triggering your loved one. Understanding the, if it could be a an emotional childhood trauma that could be affecting them/ there could be the the weather being in a cold environment triggers my dad. I think that still translates to a childhood trauma A lot of things that we can speculate about them, but if we can kind of get an idea of what the true trigger is that we can best approach that and be proactive in providing a human centered care approach to care.

Rayna Neises: 28:24

Well listeners, I hope that you’ve enjoyed our conversation today, as we’ve really looked at different things that Carlos and I have been able to try and have found successful at times other times, not so successful, right? In adjusting to and adapting to behavioral changes, mood changes in the person that we’re caring for. Thanks for joining us today, Carlos.

Carlos Olivas III: 28:44

It was my pleasure to be here and I appreciate you and everything that you do.

Rayna Neises: 28:49

Well, I appreciate you being willing to just be honest and share your experience and just encourage others, because I think you’re doing a great job. I know it doesn’t always feel like it, but you are doing a great job. Your growth is there and that’s part of this journey, growing as an individual and then seeing how well your dad’s doing, that’s just such a compliment to you and what you’re doing. Thank you for joining us today. And just a reminder, A Season of Caring Podcast is created for the encouragement of failing caregivers. If you have financial, legal, or medical questions, be sure to consult your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation