Fred shares his story of learning to relate to his father who has dementia. There has been some trial and error along the way, but that is to be expected.
https://www.kathysconsulting.com/
Katherine Cocks0:02
Hi, my name is Kathy. I've been a geriatric nurse for over 10 years. Many times when I would meet with family members of aged loved ones, they didn't always know what to do. I started this podcast knowledge for caregivers, to assist them with practical suggestions as they assist their own loved ones age with dignity and grace.
Katherine Cocks0:35
Welcome back to the podcast. This second season, I have been interviewing experts. But I also will be interviewing family members who are caring for someone who is aging. Today, I interviewed Fred guitarras. He is an architect and a fellow podcaster. Fred shares his journey and learning to Gutierrez build a different relationship with his father, how he does this long distance, and how he also supports his mother. I have found Fred story provides wisdom and insight. Let's join the conversation. Fred, tell us a little bit of what is going on with your family.
Fred Gutierrez1:11
Well, my mom and dad are retired. They're retired nurses, which I've always very proud of, I feel like their nursing really influenced me in the way I act as a person and I really hold them as strong role models. They've always been very generous to me.My mom, since they're retired. They really got active in the church. My mom is Filipino. And she came to the United States when she was 17, I think, from the Philippines to Buffalo, to study nursing, she got a scholarship, and she came in the middle of winter. And she met my father in Buffalo. Then she helped him get into nursing. They're both nurses. And we ended up in Florida because my grandfather was ill at the time in Clearwater, we moved down there, I was only two. It was a teaching school in Gainesville. So that's what they practiced. They both worked in critical care. They enjoyed the excitement of I guess it was really action packed. So we'd spent a lot of our holidays at the cafeteria, our Christmas dinners would be at the cafeteria. Thanksgiving, probably too. They also worked off shifts, my mom would work nights and my dad work days and then shift off so that there will always be somebody with us. But the trick is that person to always be sleeping, we were kind of what was the term latchkey kids, but they're working hard to give us a good life. So they put us both through school now the retire then church, my dad got diagnosed with Alzheimer's maybe four years ago. To my knowledge, maybe three years ago, time is kind of weird with a pandemic and all. But I remember him being diagnosed. I'm in Boston, I moved up here to go school about 25 years ago. And I stayed up here with my significant other Stephanie. And this is home for us. But my family who has a small family, it's just my sister and my, my parents are still in Gainesville, Florida about four years ago, we go to to visit my mom's sister and San Francisco. She's a nursing home there. And she wasn't doing well. My dad had a lot of separation anxiety with his dog. So he's always been very attached to his dog. And he got very emotional about being away from his dog. And it became kind of a struggle, he would call all the time really worried about his dog. And I think that was the early signs of stress from him in terms of recognizing that he had his own issues that he was dealing with. I think back then to me, the diagnosis was more impactful on him than the actual illness itself. Just the thought that he was going to lose his mind. I don't That sounds horrible, say that word. But in a way, that's what what it was felt like he was going to lose his memories, and his ability to recognize people. And he thought that and maybe I'm being naive, he thought that the disease was going to eventually kill them. And then it was a terminal diagnosis that he received. Maybe six months later, my mom needs a break. Because I think it was pretty hard on her. And I went down and my sister and my mom were going on a cruise. So I took my dad and his dog and a friend of ours that he knows and his dog to the Key West and I thought it'd be nice. We'll be there with the dogs with somebody he knows pretty well. We'll just rent a place and we'll just relax. But when we were there super stressed and really wasn't able to operate well being away from home. It was scary. It was scary how stressed he was. We almost just returned home. Alright, but we had to stay down because that's where the port they were gonna leave from there and we Turn, that was a good eight hour drive from Gainesville. So these are kind of the things that are leading up to me kind of, I realized that I need to be more involved in this because it seemed like my mom was getting more stressed herself about the responsibility of being the caregiver. And I needed to support her more. So I'm trying to go there, like every six weeks to be part of the family. But the challenge for me and is being away, you know, having to, to watch from a distance. And to be honest, you know, I'm a little is a guilt like that I'm not supporting as much as I could be. But then there's probably some relief and like being there. And really, maybe recognizing that it may be isn't all the bad things that I'm thinking this is just a natural progression of a disease that there are high points and low points, which, when I do visit, I see those I see the high points, I see the low points. I think he's got more high points when I'm there. But maybe I'm just telling myself that to
Katherine Cocks 6:05
the hardest thing sometimes that people don't recognize, is sometimes it's the personality changes, before they see too much of the memory loss, which is what I see, I don't know that I have some great statistic to show you. But that's what you guys were kind of seeing and going well, maybe this is weird, because you were seeing an emotional response. And the best thing I ever read one time of how to explain it is like when you walk out of a grocery store, you know, momentarily you like forget where your car is where everything is, that's what a person with Alzheimer's is going through. So when he went to a different place, he was feeling really disoriented. But he couldn't explain that to you, because he didn't know why. And so you know, you saw something, but neither of you were probably going what's really going on. And so that's why they get that cold disorientation type of thing going on, the hard thing with Alzheimer's is the diagnosis. When you're talking about your dad thought it was terminal, right? People can live with it from five years to 20 years. So it's a long process that your mom, your family, that everyone's dealing with something and so you have to sort of figure out what I'm going to do in the long term, I think what you're doing going down there every six weeks is definitely a benefit to your dad seeing you hanging out with you may not have to feel special. What do you like to do when you go down?
Fred Gutierrez7:33
Well, my dad has always put me to work when I go to Florida, because he's always had rental properties. So I always hated that. But it's really what I'm good at. So now I want to go down and work. So it's kind of the roles have flipped, and I want to put him to work. So our last big project will be powerwash the driveway. And it was a great project for us because he could understand the task and he got involved in it. And it got him some exercise, which was good. He found a groove to the powerwashing. That was really nice to see. Because I think that's one of the things that's hard for me to watch or to experience is my dad not not being curious about things anymore, just kind of falling into a rut, you know, watching TV without really engaging in it. I think it's a placebo for just having something going on. And I can understand that. I mean, I think everybody's done a little about in the last year, just watch TV to try to numb your mind. But yeah, I want to get him involved in things. But truly, he doesn't have a lot of energy to do these things. But he enjoys starting the project and getting there and then watching us do the work. So right, that's what we usually do is we usually do little projects.
Katherine Cocks8:52
That's good because you said he had rental property. It's a thing we call muscle memory. They can do some they may not be able to explain to you how they do it, but you get them in what they used to do. And they just automatically do it. Their brain just sort of functions on that thing. It gives them purpose. I had a couple interviews with OT and PT and the best thing is just do normal things they like to do like powerwashing that's Yeah,
Fred Gutierrez9:13
yeah, I'd like to him to do some painting. Because he really enjoyed painting he really kind of self proclaimed himself an expert at painting. Some painting pictures or painting balls, painting houses, yeah. Painting inside of houses, but this there's a lot of exertion for him too. I wanted to try to maybe figure out a way to like, maybe get some birdhouses and have them paint birdhouses or something.
Katherine Cocks9:37
Have you seen then from Is it from the pandemic because not everyone who has Alzheimer's also has the physical decline? So is he having both?
Fred Gutierrez9:46
Yeah, he's he had a he had a fall and hurt his knee. So his his mobility is very quickly decreased. He moves pretty slowly. Yeah, we have to watch out for him. We're worried about Another fall, we got these walking sticks and he refuses. I'll walk with them. And sometimes they'll grab one and do it. But he's not there yet.
Katherine Cocks10:10
I know. It's just really hard for people to learn something new. Yeah. And they have Alzheimer's. So if they didn't use a walker walking stick before, it's right. They don't do it. People think they're doing it on purpose. And they're not they just write plainly don't remember how,
Fred Gutierrez10:25
what I like to do take them to to Home Depot or Lowe's. And I get one of those big carts, the big heavy ones. And I'll throw some soil in it. And then we'll push it around, like, that's awesome. So he's got the mobility, and he's got a little exercise. And I'll just say, Oh, we forgot something. We'll have to go over there. I mean, we really getting stuff. But it's kind of nice to kind of walk through a hardware store with them. That's a nice thing to do. That's kind of like that's the the picnic.
Katherine Cocks10:56
Right? And Did he enjoy hardware stores before since he was
Fred Gutierrez10:59
oh, yeah, he loves hardware stores. Yeah. So it's, it's a perfect place. Yeah, I guess you have to realize that and in a way, that's enough doing stuff like that. I've always struggled with this. And I think everybody has when you're visiting your family. I mean, everybody, it's sometimes it's just too much like you're trying to do too much. That's those little things that really what what a family is about, you know, the one thing that we did, and it would be nice if we could do it again, but I don't think we can it's for a long time. Our whole family volunteered in West Virginia, we would go down in the summers for two weeks, and build houses that renovate fix houses for people that didn't have the means to do it. And we would stay in an elementary school and cook our own meals there. And I love that as a vacation because you knew what you were doing. And you're doing it as a group. And it was very rewarding. But you still have that opportunity to catch up with people you haven't seen all year.
Katherine Cocks11:53
Did you do that, like as a kid or as an adult? Was that? No,
Fred Gutierrez11:56
as an adult, I was already living here and they started doing it. And I would go down and meet them. So I was already at a school.
Katherine Cocks12:04
I think that's awesome. Because you're doing something for someone else. You're keeping physically active. You're hanging out socially. Yeah. But again, probably with that disorientation in new places. Yeah, fine yet to find something probably closer.
Fred Gutierrez12:20
Yeah, travels gotten tricky with them. We did fly him up here to see his childhood friend for his 80th birthday. And it actually went surprisingly well. They they flew together. They came to Boston, and then we all flew from Boston to Buffalo. Then we drove from there to this other place, which was like another three hours. So as a lot of planes, trains, automobiles, but he did really well. And he did well with his friends. And he went back to Buffalo, which was where he grew up, he could remember a lot of things about Buffalo. And we drove around, he was telling us where to turn who's nice.
Katherine Cocks12:57
That's to me, the most fascinating thing is what people do you remember? Yeah, that's probably why when he went there, he didn't have that disorientation. Because their memories kind of go backward. So they'll remember things from their childhood. And you're like, I mean, word for word place. Like you said, he knew everywhere he wanted to go. How's your mom doing with all this?
Fred Gutierrez13:18
I think she's doing well. She's amazing. She's always been a caregiver, she's always been super generous. And that's hurts me is like she's at the age where she needs to be taken care of herself. And not like she's asking to be taking care of herself. But she's earned this retirement for how much she's given over her life. For her to be in a situation where she has to be this constant caregiver really hurts to see and, but this is her husband. They've made a commitment to each other and she's going to keep that but it is hard to see how much she has to give.
Katherine Cocks13:55
If you talk to spouses, and they would tell you, they wouldn't want anybody else doing this. Yeah, that's how much they love their spouse and they would not see it as I'm giving up this or that or the other they would see it as Yeah, we've done this thing but definitely, I am always feel like I'm just like hammering we got to protect the spouse, they're my my husband's parents. You know, I love them both, like my own parents. And the same thing happened she became the caregiver. And I was like, everything I was doing with my husband sister. She because she lives a little closer is that take care of dad but then let's also make sure mom was being taken care of as soon as I knew it was going on. We interviewed a company hired some help. They found an gentlemen almost my father in law's age. I think he was a couple years younger they both had this big white beard and they would just go out to eat and laugh and it was awesome for for both of them. You ever hurt to have that break. And then he had this companion that he just kind of look forward to. They just were kind of goofy together,
Fred Gutierrez15:06
I recognize that now, it's hard to ask for help. It's like, You're that strong will like I can do this. But I think we got to a point where I realized, I think people want to help. So we need to give them the opportunities to help. So we've kind of reached out to our community, everybody loves my dad, if you reach out to him and say, if you could visit my dad, once a month, no agenda, just come by, say hi, and spend half an hour with them. That's huge. He'll love it. And most of the people that do it will love it, too. So you have to give people that opportunity. You got to remember that, that that people want to be there.
Katherine Cocks15:42
That's very wise, because last year was just health wise for my husband was just an awful year. I remember calling my pastor, I'm like, I am so overwhelmed. He goes, what do you need? Well, I didn't even know what I needed. I just knew I was overwhelmed. And so I had to really stop and go, I just needed somebody prepare me a couple of meals. It was like one thing after another. We just couldn't keep up. I was trying to do everything, my job, my podcast, and I didn't stop long enough and say, what do I really need when he just said, What do you need? He's like, I don't know how to help you unless you tell me. And so that's where I had to really stop. And I was like, I can't think of anything. So but somebody could prepare some meals. For me that would helpful. So they Yeah, you know that some people from the church and we contacted and like they made me a couple of meals.
Fred Gutierrez16:27
It was like, and they probably felt really good doing it. Yeah. Right. Yeah, people do.
Katherine Cocks16:32
I think when we're a caregiver, I'm just trying to get through the day, get everything done. And then you get the in the day and you need somebody do the housework and you somebody to go to the grocery store, you need somebody to come sit. And so you're right. We have so much in the community that we can ask, besides the fact that we can hire and yeah, yet community stuff. And even
Fred Gutierrez16:52
that helps with hiring if you have more people come in and help in that helps that transition, that you're not alone. People are going to be helping you
Katherine Cocks17:01
and your dad, I guess I assume he has a lot of his own personality that people were he said he was a lot of friends with.
Fred Gutierrez17:07
Yeah, he's, you know, he's always been a very kind and kind of kid like in his personality. So he's never been rough. He never swore. And that's what's really shocking is sometimes he'll with with the disease, he'll get really upset and he'll, he'll lash out by saying nasty things, which from some people, it wouldn't feel that nasty, but from him, it's just like, way over the top. And you can sense that he's gone there because he's just really frustrated. He's just really doesn't know where else to turn. Other than verbal abuse. It's not often but it's hard to see. But in general, when he's kind of found himself in tough situation. He just laughs it off. And I think that frustrated my mother for a while, like, cuz, you know, I guess you feel like, you know what they're laughing at? They're laughing at themselves. They're just laughing at the situation. I find myself doing the same thing. When I get hurt. I usually start laughing. I think it's the response for a lot of people. But my mom, I think she's gotten used to it now. But at first I was just frustrated.
Katherine Cocks18:13
My husband laughed at me because when I get hurt, I go clean. Or you go cry You mad. Really start late. Are you mad at me? Sorry, often? Yeah. Anyway, I think you guys as a family, I know it's hard, long distance. Because I'm dealing long distance with both sets of family. I went home to see my dad. I think he felt like he was getting interrogated. Because I was like, Tell me your meds tell me what are you gonna do if you fall? Because He lives alone? Are you still driving? Those kinds of things? So or how's your driving? Are you have any recs? He was like, I was ready to disown her.
Fred Gutierrez18:50
Yeah, the driving is the really challenging with us. Okay, this is the part where I'm not there all the time. So I'm, I'm kind of like trying to support my dad, because I know, when I first heard that he was going to lose his license, I actually had a nightmare that my mom was going to take my driver's license away, and I woke up in a cold sweat. And I recognize how much freedom that takes away from somebody. And he, it really will devastate him, it's already happened. But when he recognizes that it's happened, because it's a state of mind. It's a civility. I mean, everybody, you remember your first time driving a car, and it's just like the world changed. I mean, and then did have that taken away is and it's not like he can call an Uber either. That's too challenging for him. He's hasn't had an accident. Driving is actually not too bad, though. It's incredibly slow. So people pass them. But he's had a couple of events where he can't get a car started. So either he's forgotten how to turn the key or I don't know what kind of car they have. Or he's not pressing the right, accelerator brake or something. So that's scary that he's forgetting those things. The worst case scenario is that he forgets that the brake is on one side And then accelerators on the other side and that that happens to people that aren't losing their memory. It's just it can happen. So that's the big fear. The other fear is when he wants to drive in my mom's in the car, it really scares her. So we've been trying to accept the fact that he can't drive. And the last time he got lost, because the car is trackable. So we know we can find out where the car is. One time he got lost, my sister went and got him and he was surprised that she found him and, and then one time, we're like, Well, we were advised that we should just let the police go get them. And they'll help them get home. So that's what we did is we basically said he was missing that we said we know he was when they went by they address them. And they followed them home and kind of told him something about him that he shouldn't be driving. And then I think somebody and I'm just learning that this week is I think we received some mail that they were taking away his license because of some reason. And I didn't see it. And that piece of mail, curiously disappeared in the house. My mom just found it the other day. So I think the that he has had his license revoked, and I don't know what what event that was,
Katherine Cocks21:10
it probably was the police going to get him.
Fred Gutierrez21:13
It might have been that guy. It's just best that he doesn't drive for everybody's safety. But I understand how hard that is. I don't even it's such a hard subject. Right.
Katherine Cocks21:23
Is there anything else you want to say?
Fred Gutierrez21:25
I'll report back. I mean, it's an evolving thing. But I'm feeling more comfortable with the situation. I think part of it, you know, my sister and I are starting to recognize that this may be something we might have to deal with our families might have to deal with. That's a scary thing. That's kind of opened our eyes. And you know, looking back at you kind of my father's, you know, siblings, there's a little bit of history in that. They all haven't gotten to this age, but the sister is definitely similar. She's in a home now. Yeah.
Katherine Cocks21:53
Yeah, over 80. It's just that's the risk factor really, is being over 80. And everyone's living longer. So we get to live longer and enjoy a lot longer life. But then we have all these issues that we're dealing with the memory and it's hard on family members. Fred, thank you so much for coming on the podcast, sharing your story, being really honest with us, telling us about your highs and lows with your dad. It has definitely been something that I have enjoyed and I have gleaned some really great insights from I hope you have enjoyed this podcast. If you have found it helpful, then share it. If you wish to contact me for consulting services. You can reach me at www.kathysconsulting.com and Kathy's is spelled KATHYs. Remember, our content is meant for informational purposes only, and not to replace the advice of healthcare professionals.