From Soldier to Caregiver : A Veteran's Son Battles Dementia with Love and Mindfulness

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Zander Keig grew up in an unconventional household, as his father explored alternative spiritual practices like meditation and yoga alongside his career in engineering. Zander was exposed to these ideas from a young age. When COVID lockdowns began, Zander and his wife had to care for his father full-time while working remotely, which caused stress and isolation. Zander's father's health rapidly declined after moving to assisted living.

When his father was scammed out of $18,000, Zander realized something was wrong as his father had always been very conscientious but no longer recognized scams.  Zander would move his father to Florida, taking on the role of primary caregiver for his elderly father, who was living with dementia. 

Despite the challenges of caring for his declining father, Zander tapped into various support systems, attending both grief and all-male caregiver support groups. During visits, Zander focused on sensory experiences over memories of visiting his father. Today, Zander is committed to helping other LGBTQ caregivers by sharing his story and resources through consultative services.

About Zander:

Zander Keig is the founder of Keig Consulting, LLC and an award-winning speaker, educator, and author, earning many distinguishing accolades for his work, including the 2020 WPATH Harry Benjamin Distinguished Educator, 2020 NASW National Social Worker of the Year, and 2018 NASW CA Social Worker of the Year. Zander has earned a BA in Speech/Interpersonal Communication (1999), an MS in Conflict Analysis and Resolution/College Student Personnel Administration (2003), an MTS in Theological Systems (2004), and an MSW in Clinical Social Work (2012). He has subject-matter expertise in workplace conflict mitigation, implementing social care services, illuminating transgender experiences, and delivering dynamic personal wellness and well-being* webinars. Zander is a fifty-something-year-old first-generation American of Mexican heritage (Latino), a post-transition transsexual man, a Coast Guard Veteran, a childhood TBI survivor, a neurodivergent first-generation college graduate, and the primary caregiver of his elderly Veteran father living with Dementia. To build support and awareness for LGBTQ family caregivers, Zander co-founded the LGBTQ

Transcript

Natalie: 0:02

Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad and the completely unexpected. You're guaranteed to relate the inspired lead with helpful tips and resources and of course, laugh now, let's get to today's confession

JJ: 0:29

Hey, Madeline.

Natalie: 0:31

How are you doing this morning? You

JJ: 0:32

know, I'm fantastic. You know why?

Natalie: 0:34

Tell me tell me tell me.

JJ: 0:35

This is our actual first recording since I got back from my vacation. Oh

Natalie: 0:39

my god, I bet you're still jet lag. Let's see. It's

7: 0:41

47am We're we're recording and so that means it must be 747 where

JJ: 0:49

I was in almost ready for bed.

Natalie: 0:51

Oh my guys, I hope don't fall asleep on Xander. There's no you know what, it's not even possible to fall asleep on him.

JJ: 0:59

I'm doing wonderful. But I'm excited. So I'm feeling all chatty. So Xander has been warned. Me

Natalie: 1:08

let's say you know what? People love to hear about your vacation. It was 30 days people that's ridiculous. But but let's not talk about your vacation. Now let's talk about what we're here to talk about today.

JJ: 1:20

It is and today's guest is fantastic. Xander kick. He is an award winning speaker, educator, author and founder of kid consulting. Okay, I got Sanders biography. And I love self description. So Xander This is read word for word this this description. He says I'm a 50 something year old first generation American of Mexican heritage as a 50 something as well. Sanders, so

Natalie: 1:45

that's fine. She's in her 50s

JJ: 1:47

Sorry, a post transition transsexual man, a Coast Guard Veteran, a childhood TBI survivor and neurodivergent first generation college graduate and the primary care caregiver of an elderly veteran father living with dementia. You got a lot going on Xander. Xander definitely has a caregiving story and he's used it to build support and awareness for LGBTQ family caregivers. And that's not been out there for quite a while and so we're excited to hear about it. From the early signs of his father being scammed out of$1,800 on Facebook to moving his dad in and caring for his dementia while working from home during COVID to ultimately moving his dad to a facility that can meet his needs. This story is filled with pieces that touch us all. So get ready by your seat belts. Xander, we are so happy to have you here with us this morning.

Zander: 2:39

Thank you very much. It's great to be here. And you know, just I must have missed a zero because my father was scammed out of $18,000 What?$18,000

Natalie: 2:53

Oh, there wasn't a zero off. I hate those people. I just feel like you need to know that I hate those people like, Josh. Like the rest of us.

JJ: 3:01

I missed the zero then I missed something because I saw 1800 18,000 I'd be fired up right now.

Natalie: 3:06

Oh, let me tell you something, I'd be cutting somebody check. Well,

Unknown: 3:09

as you as you might imagine, when my father first told me about what was going on, I was sitting with my dad and my wife, we were having brunch at a restaurant in San Diego, California where we all used to live. And he as he was telling me the story, it was just sort of so casually coming out of his mouth. And I had to just remind myself, stay calm, don't overreact. He doesn't understand what's happened. And I could tell immediately that it was a scam. But he thought it was just a friend helping him with something. And so I had to stay very calm and ask him, you know, questions, very open ended questions to try and elicit as much information as I could to know how bad it was. It was, it was I was I think I was probably holding hands with my wife under the table like, Oh, my God, this is terrible.

JJ: 3:58

She's well, well, you know, and this is kind of jumping forward. But I do since we're talking about it. So yeah. You're you said your dad when I was reading about this, this event, which is now 10 times as bad as I thought it was. Your dad had always been really conscientious about things like that. So in addition to the amount though, you were really surprised that this has happened to him. But this was how he noticed that because your dad suffers from dementia. Had you noticed it before? Or this was like the red alarm? Oh my gosh, something's going on with dad.

Unknown: 4:26

This was it. This was the moment that I realized that somehow, some way my father was not capable of recognizing that he was being scammed. Because you're right. He was very conscientious about the you know, the company. He kept his business dealings. He was a very smart man. He wasn't a college graduate. But he was very learned on his own. He was well read. He was you know, he traveled the world. My father was not stupid. He wasn't gullible. He was not somebody that could easily be taken in manager. So I knew that when he said, you know, he, this is what it was he said to me, I said, Dad, how have you been this week? And he said, Better than last week. And instead of letting it go, that was a very unusual thing for my father to say. Yeah. And so I said, Oh, what's different this week from last week? And he said, Well, you know, all the gift cards last week, and I said, Oh, what gift card and then it just went from there. Like, if I hadn't been paying attention, if I would have just went, Oh, that's good. And moved on. You know, most people aren't paying as close attention. But I think just my upbringing, and also my social work training, I'm on trained to pay attention to things that are out of sorts, even when they're really minimal like that. It was just, it was just a way of speaking that my father didn't speak.

JJ: 5:51

Yeah. Wow. You know, that's hard and you say your social your social work background Xander. But I will say sometimes it is hard, especially when you're day in and day out with someone that's older. And you hear that, you know, you're always talking about the weather or someone's dad. And so sometimes you are dismissive. And that's a good reminder that you you do need to be attentive, because if they do say something, and it does catch you, you really made Johnson Okay, that's good. Oh, okay. And I know we all I know I do sometimes when I'm talking to mom on the phone, and, and she, I'll take the blame for it. And that's that you call it it, it was like gift cards in itself is a terrifying thing. So I know Natalie's had a little experience of that with her company of people buying gifts, we

Natalie: 6:30

totally did bought it for the CEO. And I'm just like, and, you know, the the part and the sad part is is people that don't have you know, some limitations. You're, I mean, it's fact that common sense you would think would would prevail. But these people are very, very skilled at selling, which again, still kind of pisses me off, that they do not take those talents and use them elsewhere and pay taxes on it. So and so I just think that's terrible.

JJ: 7:00

How old was your dad and Xander that what, at that time?

Unknown: 7:03

78, or 79? Oh, you know, they're also bullies, because they were doing a lot of this through text, it started on Facebook, but then it moved to text, because my dad had to take photographs of the front and back of each gift card. And it wasn't just gift cards, it was 9000 and gift cards and 9000 Straight out of his checking account. And so the the texting, I said, Oh, let me see your phone. Let me oh, let me just see. I was just very like casual about it. Oh, let me see. And I could see in the text that was being texts that were being sent from this from this person, or these people were in all caps with lots of exclamation points. Lots of question marks. So they were it was like a bullying tactic. Like they were yelling at my dad. Like there was a sense of urgency. And, you know, don't slow down. It was it was so alarming. I just I just took a bunch of screenshots I contacted the Sheriff's Department. Yeah, you know, it was, yeah. And Facebook and the bank. Yeah.

JJ: 8:05

Yeah. Wow. You

Natalie: 8:06

know, and that's absolutely, I'm just sitting here saying I'm like, you know, there's a couple of little nuggets that I take away in there. It was like, be calm. Like, especially with the person your loved one, because here's the thing. You know, I know that if that happened to mom, mom would be mortified. Number one that she'd been taken even and you know, your dad didn't understand. But he's also a pleaser, too. And like, he doesn't want to disappoint you. So if you're not calm, he is going to dysregulate him and make things probably even worse. And so I think that let's be calm. Let's figure it out. Let's not. And then what, let me ask you this sander. Is there any safeguards, like after you notify the bank and the police and all that? Is there any safeguards that the phone company like it that you could put on your dad's phone to make sure that we kind of divert that or notify you? Or does the bank say, Hey, we're not going to allow for certain transactions to be anything that they said you could have done this do this differently moving forward?

Unknown: 9:09

Unfortunately, there was very little help from the various agencies that I reached out to it was one of those things where, you know, there's not much we can do about it. We'll take a report, we'll, you know, so on Facebook, I went into my father's Facebook and I, I sent off a notification to to the internal Facebook, you know, team that deals with fraud and said, you know, this is the person and the thing is that the way they do it is pretty masterful, because the Facebook page that they commandeered was a longtime friend of my father. So he trusted that this was a friend of his, and then at the time, the most heartbreaking piece of it for me, was that my father was trying to do something for me Me. So the way it was sold to him was, you know, we're gonna give you this big chunk of money, but you have to give us this little chunk of money up front, before we can release it to you. It's like a little processing fee. And he said, all they wanted to do was helping you pay off your student loan. Oh, and so that got me because he knew that, you know, the amount of debt that I was in with my student loans back in that time and was was a daunting, you know, for me, I thought I'd go to my grave with student loans. And he was wanting to help me. And then he got scammed out of $18,000. It was it made me even angrier.

JJ: 10:42

Yeah, okay, that upsets me. Okay, we got lost in that that upsets me so I'm gonna I gotta figure out when we if we find you or if we find you Facebook person. That's very upsetting. Okay, so Xander, we really got into this financial portion. I'm gonna we're gonna have some sort of session on helping out with that, because I do hate when people take advantage, especially like my mom and stuff. So yeah. So Okay, should we jump back? Natalie, let's go back to okay, you were born or because you're in San Diego, Florida. You've been like around you've got

Natalie: 11:11

a number one. I always like to say this. Thank you for your service. Yes. Thank you for your service, because we love our veterans. We love our military. And your dad was also military. Marine Corps. I was in the Coast Guard. He was in the Marine Corps. Yeah. So I think it's kind of like, we're gonna start from the beginning and kind of move forward because you hear dad, mom,

Unknown: 11:36

and my mom passed away in 2000. My parents were divorced when I was two. So I was raised by my father as a single parent.

Natalie: 11:43

Okay, okay. Okay. So moving forward. So you had military bring up, bring up. And so So you decided that you thought, Okay, I'm going to follow that path too. Right. So kind of walk us a little bit forward and then jump into like, we're like the big thing that hits? Where does Where does our care start. So my

Unknown: 12:02

father and his four older brothers were all born in Mexico. And my grandmother decided to send them to the United States for school. So they, once they hit certain ages, they would be sent over to a boarding school in Texas and a town called Brownsville. And so, and then as they became of age, 1718 years old, they all went into the military. So I had my oldest uncle Edward went into the Marine Corps. My three other uncles, Victor, David, and Sven went into the army. And then my father went into the Marine Corps. And so yes, all my uncles were in the military. And so I grew up around that none of my uncle's retired from the military, except for my Uncle David, who medically retired because he developed a heart condition, but most of them did, you know, one, two, or which is four years, or maybe two or three, but none of them did the full the full retirement tour. And it's my father did four years in the Marine Corps. So it's like, Yes, I was brought up by somebody who had been in the Marine Corps but my father, interestingly enough, he wasn't gung ho Marine. When I was being raised, my father was into very esoteric things like Gestalt and going to the Esalen retreat center and big stir and learning going to men's discussion groups or consciousness raising groups. And he worked as a trainer for a training system called SST, lower E, lower s, lower T for Earhart systems training, I believe it stands for so he was into this human potential human actualization. And he was but he was an engineer. So we had this really interesting like, left brain, right brain, you know, he was doing yoga and meditation. So I was raised in this kind of, I don't know, strict, but also kind of hippie, you know, like

JJ: 13:50

ultimate Zen.

Natalie: 13:52

Zen was the word I was thinking. I was like, that's still super Zinni. Yeah, your

JJ: 13:58

dad is way ahead of his time. Here heavy. Ah,

Unknown: 14:02

yeah, he really, you know, for my 12th birthday, my father took me to the Transcendental Meditation Center, and my 12th birthday present was getting my mantra. So I mean, and he got me, you know, books like The, you know, mindfulness or meditation for the teenager or Zen in The Art of Motorcycle Maintenance. Like, this is how I grew up when I was made when I was like, 1011 12, my father would bring me along to these s trainings, and have me speak to people who put me up on stage and me speak to people, and then they develop children's seminars. So my dad would sign me up for like a all two day, you know, seminar with these, you know, Hollywood actors who are leading them. It was such an interesting time. I was also my dad would take me to the Italian Universalist Church. And so I was learning all about different kinds of religions around the world and Transcendentalism and American stoicism, like through Emerson and Thoreau. So it was it was interesting the because, you know, he was a Mexican man. So there's a cultural component to it. He was a Marine. And so there was that kind of component to it. But he was really into all of these, you know, funky, artsy hippie kind of alternative things. And yeah, I love to see.

JJ: 15:17

I mean, it sounds like he's a seeker of knowledge. So do you think that's kind of through your life? You've always just been seeking more and that's kind of how that got embedded in you.

Unknown: 15:25

Absolutely. Okay. Absolutely. My mother is similar. I just didn't grow up with my mother. But I spent time with her I visited with her. My mother did psychic readings and owned a shop in San Diego, California that sold my tarot cards and candles. Right, so and she was a minister with something called the spiritualist church. Right. So my parents were definitely, you know, that very alternative style.

JJ: 15:51

You were like the cool kid.

Natalie: 15:53

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Unknown: 17:11

you know, becoming a social worker happened late in life for later in life. For me, I went from being in the military to law enforcement. And when I left law enforcement, then then I pivoted into cut, basically a being what I say, I pivoted into doing more alternative things. So I went to school to become a massage therapist. I took a part time job at a natural food store. I began teaching cooking lessons on how to veganize your favorite recipes at a local Unitarian Universalist Church in San Diego. So I was I guess I was following somewhat in the path of my father except for he was doing both the engineering and the more alternative or esoteric stuff. Simultaneously, I kind of went from doing one thing, right military law enforcement to like, now I'm gonna do massage and work in a natural food store and teach, you know, vegan cooking classes. So I did them in succession rather than simultaneously. Yeah. And then after that, then things started to blend together. And I wasn't sure exactly what I was going to do as a as a next career. I thought about being a lawyer. So I took the LSAT and I went to law school for a short period of time. And I realized it was too much like the law enforcement experience. And so I left law school. And I was wondering, What am I going to do and my wife and I met in seminary, so I have a master's in theology. My wife has a Master's of divinity. And she had gone into chaplaincy, which I thought was really very beautiful, you know, work, and then it became a marriage and family therapist. And so when she was looking at what she was going to do after her chaplaincy training, and she thought about doing the lm t program, I started looking to oh, maybe I could do something like that. So I looked into psychology and marriage and family therapy and licensed professional counselor, mental health counselor, drug and alcohol counselor, and social work in the way I made my decision about which occupation I was going to go to was I read the code of ethics. And I loved the code of ethics for social work because I liked it our emphasis was working with the poor, the marginalized, the oppressed, I liked the kind of work that social workers do doing psychotherapy is not a standard social work career trajectory. It happens but mostly we do case management and discharge planning and we work in schools and prisons and and with people in child welfare and adult welfare. So it I've never I barely done psychotherapy

Natalie: 19:54

as a practice out there. No one would pay me Xander.

Unknown: 19:57

I tried it. I did try it for a year and Half with a very small had seven clients, and I enjoyed it. But if I had to do that for a full time basis, no, no.

Natalie: 20:08

So let me ask you this because I want to, because you and I could go into social work fun all the time. So I want to kind of kind of steer us back. So you're doing all these cool things, right? And your your life is going this really comical and your dad has really had some cool transitions through his life too. But at what point do you start getting kind of does it start to transition? And in addition to those, those those what you're doing personally, you start seeing that there you're there's something going on with your dad, and then he needs support? What's that? When did you start transitioning into that more? That caregiver role? What does that look like?

Unknown: 20:44

So about a year after my father was scanned, my wife and I talked about moving to Florida where we live now, because her whole family had come out here her sister came out first with her family. And then her parents came out here when they retired, and she wanted to be closer to her family. It was a lot of traveling back and forth, right for holidays. And so I said, I can only move to Florida if my father will come with us. And so it took about a year, maybe a year and a half of asking my father periodically, you know, we're thinking of moving to Florida, would you come with us? He started out with, you know, absolutely not. To eventually he said, Sure, why not? You know, and maybe I can live with you and I'll be your butler, I'll, you know, I'll do the dishes and cook the food and do the laundry. And I was like that sounds like a great plan. And but I said to my wife Margaret, I said, As soon as my father said yes. Without hesitation, I knew that there was still something going on because my father was determined my entire life to never leave Southern California. My once my father got out of the Marine Corps, he settled in Southern California. He was he was never going to leave. He was either in LA County, San Diego county or Ventura County was never going to leave. And so when he said sure, why not. I was like, okay, something something's really not right. But the but the moment I knew that I needed to step in, was, when we got to Florida. When we got to Florida, we had to go to the DMV, they don't call it that here. But we had to go get our new driver's licenses and ID cards. And we needed to print out documents that proves that we were residents now. And all of our stuff hadn't arrived yet it was in route. So we didn't have our own computers. So we were living in this large condominium complex that had a business center in it. And I said to my dad, hey, let's go down to the business center. And we could just use their printers or computers. And we can print out these documents that we need. I had sent him copies of things that he could print out. And so when we got down there, he started a computer, I started computer, I wasn't paying any attention to him, I was just moving the mouse around and I was clicking, clicking, clicking, finding the documents, or opening up my email account, finding the documents, printing them out, I go to the printer, I grab them. And then I go into standby my dad's computer. And the the internet isn't even up like the like where to find his internet, you know, or his Gmail account wasn't even up on the screen. It was just a blank screen with all the little icons on it where you have. And he had been working on a laptop with a little pad on it. And when he opened up his pad, his Gmail just popped right open. It was like a Google Chrome laptop. So all of a sudden he's on this odd computer. He doesn't know he didn't he couldn't remember how to use a mouse. He didn't remember double click and right click and and so at first I was like, oh, yeah, just click on the Chrome icon Dad, just any. And he was just sort of was frozen. And I pointed to it, and then and I was like, you don't move the move the mouse. And I said use the mouse to move the little arrow. And he was just struggling with it. I thought my father was a computer scientist. He knew all about computers, he you know, we had computer stuff in my household when I was a kid. Yeah. And I saw I was like, this is something's really strange. And so I just I helped him with it. I didn't want to take over, but I helped him do it. And I thought, okay, something is really wrong. And I said to my dad, the next day, hey, we're new in town, let's go register at the local VA clinic. Because we need to get new doctors and we need to, you know, get all this stuff, you know, change our address in the system. And so my father got set up with a geriatric with the geriatric team or clinic at the, you know, the team at this bigger clinic, and I went to his first appointment with him and told the doctor, you know, this is this is what's been happening and they did a mini mental exam, and he didn't do very well on that at all. He didn't know what year it was. He was off by like 25 years. And so they said he probably has dementia and that that's when it really started but he he was living with us, he was fairly independent. You know, we my wife and I would go to work and he was he was doing his things he go to the gym every morning. And then he'd go into the community area and hang out with the concierge and have some hot chocolate. And then he'd walk across the street and get some lunch. And then he'd come back and he'd watch some YouTube videos of Neil deGrasse Tyson, you know, like, he was just sort of doing his little thing. But by so he's he was diagnosed, sort of, tentatively with dementia, in February of 2019. In September, they sent an occupational therapist from the geriatric team, to the home to do an evaluation. And he he couldn't do most things that he needed to do to be safe at home, operate the oven, you know, the taking a shower, you know, getting in and out of the tub kind of thing. And so they said he now needed to go to adult daycare.

JJ: 25:47

Yeah, yeah. Were you noticing all these things? I mean, I know that you know, your background, social work, you and your wife both, but when the occupational therapist came in, and he's in your house, do you feel like he needs? Does he need that extreme help? Or are you have you not really noticed that he's like, Well, I don't think it's safe for dad to be here with, you know, using the oven? Or maybe he does need a little extra help? Are you noticing those things? Are you like, no, he's still okay. Are you avoiding realizing a question? Or are you avoiding,

Unknown: 26:17

I wasn't avoiding but what I have said in the past is, I don't like to social work my home. Right? I don't like to social work my family. So I really do take off the Social Work hat. So I don't look at things through a social work lens. When I'm when I'm with my family. I just don't want to do that. And so also, you know, he was on his own during the day. And as far as I knew he was eating because His food was, you know, he was eating food. He was doing his own laundry, I could see that he was trimming his nails. He was trimming his beer. So I could see those things. But what I couldn't see was that he was completely ignoring his feet. And he was always in shoes and socks, and I wasn't seeing that. So and when I weighed when we came home at night, we cooked dinner, and we all sat down and ate together. So I didn't see him using an oven. So he was basically making sandwiches and using the microwave. Okay. And but he was also he was also going to have lunch at a restaurant across there down the street every day. Yeah, that was part of his daily routine. So he was he was probably eating something very simple for breakfast. That was easy for him to do. And then he was or maybe he was just doing brunch. Yeah,

Natalie: 27:35

honestly, that's that's me. Honestly, because JJ will never know if I have lost it because NSA lost it in the sense of I start losing my memory and you start getting dementia, Alzheimer's, because I don't cook. So that will not be the trigger for me. Because I eat eggs and avocado if I ever stopped JJ eat and eggs and avocado.

Unknown: 27:58

Well, and a lot of people don't know that people with dementia in the early stages, do masking behaviors. Hmm. Where they, they know that something is wrong, so to speak, something is off. But they mask it by doing behaviors and engaging in particular ways. Like nodding their head in the foot like oh, yes, aha, and engaging in conversation. Like they're able to track what everybody is saying. So my father was always very conversational. And I noticed that he would just sit and nod a lot. And not join in not interrupt, mostly, you know, because that's the Mexican way. We just jump all over the conversation. And so that was another piece was I noticed that the way in which he was engaging started to change.

JJ: 28:48

Let me ask you a question. Was it ever because we've had a couple of people thinking of Bonnie Chavez who's of Mexican descent, and it was never a question that she would take care of her parents don't like to ask that question. She, she never thought about it. It was like, Okay, well, mom and dad need care. I will immediately move them in was that kind of how you? And then of course, that's kind of a discussion you have with your spouse. That it was like, Okay, we're going and I don't know, you said if we go to Florida, Dad has to go with us. But was it ever something that you said, Well, that's old? He didn't have any more kids? I'm assuming you have siblings, but that's, you know, he'll have to wing it and take care of himself. Was that ever? A discussion point for you guys?

Unknown: 29:27

Well, so nobody in my family has had dementia. Everybody in my family has had heart disease and they died in their 50s or 60s. Okay, so the fact that my father has lived into his 80s is unusual. And he does have vascular dementia. So his heart got him to just in a different way he because my father was so athletic. You know, he ran 100 marathons and 100 half marathons and 110 ks and he crossed the country on an elliptical which is this cool stand up bike? Yes, I've seen them. He's he's been really physically fit. And so that probably helped him, you know, stave off the heart disease. Yeah. But his heart ultimately, you know, had had issues. And so when when my father said, I'm going to move in with you, Margaret and I were talking about like, oh, you know, we'll have a two bedroom, he'll have his own bedroom, his own bathroom. And when we're gone during the day, he's going to help out, he's going to have dust and vacuum and do the dishes, and he's going to go grocery shop and, you know, all those things, do the laundry, that seemed like a nice thing. You know, we'd still be able to have our life do our thing. And we, you know, we take our weekends and go traveling and do the things we want to do. We weren't going to like all of a sudden start hanging out with him. But that's because I we didn't know at the time, at what point he was in his progression with his dementia. But within three days when I noticed something's really not right. We did have to have another conversation because now we have an elderly person with dementia living in our house. And everything really changed when COVID lockdowns came, because my dad's adult daycare shut down. I was sent home to work, Margaret was sent home to work. And I know people struggled with having their children in their home doing schoolwork. But could you imagine a 79 year old who is just aimlessly walking around while you're trying to do work that's supposed to be private, confidential? It was not, it was not an easy task to figure out how to manage that. Yeah. So that was you know, it completely changed our lives. Because we were told you can't go away and leave him all weekend long anymore. You can't go can't go on weekend trips. And we were used to doing that once or twice a month. Yeah, just as a way to take a break from you know, the work of being a therapist and a social worker.

JJ: 31:52

If you'd like confessions, we have another podcast, we'd love to recommend the happy healthy caregiver podcast with Elizabeth Miller as a fellow homecare network podcaster. We love how Elizabeth chatted up with family caregivers and dives into their caregiving and self care strategies, just like us. Elizabeth believes that family caregivers are the experts in caregiving beyond the informative conversations. But Elizabeth reveals the tried and true resources and practical self care tips that empower caregivers to prioritize their health and happiness. You can find the happy, healthy caregiver podcast wherever you download your favorite podcast, or go to the website at happy, healthy caregiver.com. So I know when COVID hit and everything locked down, and he's there with you all, and you really you're 24/7 Everybody is there together, and you're in each other's space. How does that how does that impact? You know, you're saying you and your wife are not able to get away, nobody's able to get out of the house. So we're all in that same scenario. But mentally, how is that impacting you that full time care? And how long does that last there in the house as everybody's working through COVID? Where do you How does that how does that go?

Unknown: 33:10

After about three months, it was pretty obvious that it was not a good working situation, to have him right. Because the restaurant he went to shut down the gym in our building shut down the common areas where he could congregate, have hot chocolate or coffee, shut down, right? So all of a sudden he and you know Margaret needed a lot more privacy because she is a psychotherapist. So she she was in heat. My dad had a desk in his room. So she would go into his room to use his desk and I was at the dining room table. And I wasn't doing psychotherapy, but I still needed, you know, some semblance of privacy and quiet. And we were like, maybe it was a month actually, who was God? No, wait, I'm thinking back now. I think it was two weeks, two weeks, two weeks into this, the adult daycare program, which also operated a very small assisted living house. They said, we have an open room. Why don't you send your dad here until the you know, the curve dies out right? And, and you know, we're flattens. And you can stay at home and work and he'll be here and the VA is gonna pay for the daytime. And you just pay for the nighttime, right? So they'd still pay for the adult daycare allowance. And I thought that's a great idea. But the problem is and this will be familiar to people who have who have, you know, done this work or had, you know, family members, the decompensation was so rapid from there. So once he was living in a house with, you know, four or five other people with dementia, and he was just in it 24/7 Even though they were working out they had a recreational therapist that lived in the home. He was still doing his workouts and they were eating good food, but I think he felt lonely and isolated. He didn't know those people. And when you have dementia, it's not like you're all hanging out having conversations with each other. Yeah, it's like five people in one living space. You know, they'll say they're in the living room in the dining room. They're not talking to each other for the most part. And so it's very isolating because he didn't know any of those people. But he knew me and he knew Margaret well enough that he felt comfortable in that so he d compensated so rapidly that he's never come home.

Natalie: 35:28

So he still lives there at the assisted living. No, he's

Unknown: 35:31

had to go into a nursing home. Okay, so he did go into skilled nursing. Yeah, he's currently on hospice. They started morphine yesterday. Oh,

Natalie: 35:41

sorry. It's my heart for you. So how long it How long has he been in the skilled nursing?

Unknown: 35:47

He went into, so he went from the assisted living house. He was there for about six months. And then I had to move into an assisted living facility that had more services available. And so I moved him into that. He was there for about a year. And then that was in Jacksonville, where we were living at the time. We're in Orlando now. And so we came to Orlando. As soon as my dad went into the assisted living facility, we moved to Orlando to be closer to my wife's family. Because the driving back and forth was an issue during lockdowns. Right. And so I wanted him to get closer to me. So it took a while because they weren't moving people around during the lockdown periods. So I was able to move him to Daytona Beach, which was an hour away instead of two hours away where Jacksonville is. And in Daytona Beach, they have one of several Florida State Veterans Affairs, nursing homes for veterans. And so I was able to get him in there as a stopping place on the way to the Orlando veterans nursing home that was being developed. It was and so he was at the Daytona Beach, nursing home for veterans for about six months. And then he moved to the one in Orlando in July of 2022. He was the first resident there he was like their Beta resident, he was on his own for about six to eight weeks, they just kept in there. And they were they were testing everything out with them. And they've slowly built up there. But you know, when he went into the assisted living facility, he was completely upright, he was able to take walks and still go into the little gym they had and do his workouts. Then he went into the assisted living facility. And he was so much more isolated. It was really because they cut everything out the events, the activities, the dining room, they shut everything down. And he ki D compensated. That's where he started decompensate further, and he fell. And once he fell, then they said you have to have a walker, then they sent him also to the emergency department and have the hospital Look at him. And that's a slippery slope for the elderly once they get sent to the hospital. So, you know, you know he's so he went from like a walker. And then he kept falling. And then he ended up in a wheelchair while he was doing physical therapy. But it wasn't enough physical therapy. So he was never able to get out of the wheelchair. And then eventually, you know, the last six or seven months, he's been they've been using a machine called a hype machine to lift him out of bed and into his wheelchair and into the shower chair. He's being fed Now spoon fed. So he's he's lost all of his own physical faculties at this point.

Natalie: 38:28

So when before go Jake, Jake, as I say you have a question, I want to I want to step back just a sec, I like to steer. Okay, we've talked a lot about your dad want to talk about how this is impacting you, and your relationship with your wife, you personally, you first you and your wife. So

Unknown: 38:46

thankfully, because of being introduced at a very young age, to mindfulness, and meditation, and you know, going through these SST trainings as a kid, the, the basic framework of these was, don't be a victim in life, you know, take responsibility, be accountable, you know, be your word, if anybody's read like The Four Agreements, like, those are the kinds of things that are definitely in that we're in the s training. Yes, doesn't exist anymore. But it's now called landmark forum for people who might know about

Natalie: 39:16

that. Did read The Four Agreements, it was a little weird, but I liked it. Right?

Unknown: 39:21

It has really good messages. And so because of that, and I think also my social work training and perhaps just my default personality settings. I'm not overly reactionary. So, you know, I'm not an anxious person. I've had moments of feeling anxious, but I'm, I don't have any anxiety disorder. I don't have. I've had I've been sad in my life, but I've never been depressed. I don't. So that I mean, I think I have some things going for me, right. I don't have major depressive disorder or generalized anxiety disorder. And so my upbringing, my social work training, it's you I think it's been as smooth as it can be in the sense that, you know, I have to simultaneously take care of business because I'm the durable power of attorney and medical proxy. So I have to take care of all the business entities of his care. And then I go visit him. And when I'm with him, I just put on this hat that says, Your father has dementia. So don't ask him questions like, do you remember when? Right, because I think too often families are trying to pull out they're trying to extract memories. And I think it's more for them than it is for their family member who has to measure Alzheimer's. And I know not to do that. So I don't do that. I focus more on things like and I've been through a training, it's called the dawn method, da w n, I highly recommend people check out the dawn method. Oh, that's like a resource. Yeah, very good resource. And so I learned from that eight week training that when you have when a person has dementia, they lose their memories to varying degrees. But they they don't necessarily lose it till the very end their senses and their emotions, their emotion emotionality. And so when I'm with my dad, now, I might do things like, take him on a walk and show him point out the flower and look at the brilliant orange of the flower or, Oh, can you feel the texture of the flower? Can you hear the birds chirping? I mean, that's the thing about being in Florida, we have so many birds, I love it here. It's just beautiful. birds and plants and flowers. And so I take them out, it's like, Can you feel the warmth of the sun on your face? So it's like, so I just pivoted, I'm like, I know what to do. And I pivoted now what changed was more recently, more recently, my father's behaviors changed. And I went to go visit him it was about a month ago, and he was cursing in general. And then he started cursing at me, so I'm not gonna say exactly what he said. But he said, Fu, you know, he said the whole thing. He said that to me three times in a matter of like one minute. And then he spit, and he took his ball cap off and threw it at me. Because just think about anybody who's parented a child, when you have an infant, a toddler, the only way they know how to register their, their upsetness is by spitting out their food and throwing their things. And so he's reverted to that. And but I found it so jarring, because I gotta tell you, I never once in my entire life until that moment, heard my father curse. Never, ever, so it was quite jarring. And I was talking to a friend about the experience. And she said, it sounds like you're experiencing grief. And I went, oh, so I immediately found a grief group. And it meets once a month and I've been going and it's an LGBTQ grief group that meets at a at a local at a local church, because I didn't want to have to explain like, we haven't talked about it on the on the on the show, but I didn't want to have to explain to the grief group people that I'm a trans man, right, it was mentioned in my bio, but you know, we haven't really talked about it. And like there's a bunch of nuance that goes into that. It's like, when you have a parent with dementia, and you're trans, you know, for people, you can hear my voice right now. But you know, for people who can't see me like, I have a big beard, and I have, you know, no hair on the top of my head. So I for all intensive purposes, I look like a man, I'm still female sex. I'm my father's daughter. But I've been his son, so to speak for the last almost 20 years. And so he's forgotten me twice. Right. So I've had to navigate through that knowing that that was coming. But thankfully, I did find this brief group. And that's been really helpful. And also there's a caregiver group, but I'll tell you more about that later on.

Natalie: 43:51

Okay, so I'm, I'm tight now because because normally we stopped because we've got a handful of minutes left. I don't want to ask a quit, keep going. But just

Unknown: 44:02

want to say it has there hasn't been Yeah, there hasn't been any issues in my marriage at all. But I'm truly blessed. To have Margaret my life. We've been together 21 years married for 18 of those years, almost 20 I think it's going to be 22 years later this

Natalie: 44:19

year. It's safe. It's good, safe.

Unknown: 44:23

It's been a wonderful, wonderful relationship. And Margaret like me, she just kind of went with it. Like your your dad's moving in with us. And we're moving to like, we're moving to Florida to be my family and you're bringing your dad with you. And because it's about family, we're both very committed to our families. And so it's like this is just our new normal now and and we went with it and my father was with us for 18 months. So we you know, We made adjustments, but there's there hasn't been we haven't fought over it. There hasn't been any tension. I just, I think are we You gel very well together, we're very compatible. And so I think it's, it's worked out really well, I'm very thankful.

JJ: 45:07

That's always so and that's a hard thing, especially in any relationship. But it's so hard in marriages when that common belief of the importance of that care and that relationship when those are on the same page sander, because if they're not, if they diverge, then it that really is difficult. So the fact that you guys are both going in the same direction, that's a blessing.

Unknown: 45:30

But as I've got to tell you, we're married. Yes, we were living in the same house with my dad. But I'm the child. Oh, I did not ask Margaret to take on any caregiving duties at all? None. Right. I didn't, I didn't expect her to jump in and do things. You know, she has her own family, she has, you know, her father was very sick for a while he passed away in 2022. So, you know, she was spending time with him. And I would spend time with with him too, but she would spend the bulk of time with him alone. And I was dealing with my dad. So we, you know, we didn't share responsibilities. And I know some people do that. But you've got to know the person you're with, you know, it's it's not Margaret's forte to be my father's caregiver. She doesn't know him well enough to do that. And, you know, when he was with us, he was he was independent, and most of his activities of daily living, so he didn't need all the kind of care that he needed once he went into assisted living. But, you know, I wouldn't expect Margaret to do even, you know, I mean, she helped cook dinner, and we ate dinner together. And we went out to the movies together, but I wasn't expecting her to make phone calls or, you know, check in on him. And you know, in those ways,

Natalie: 46:48

that's important. You mentioned a caregiver group, I want to go back to that. And just because you said the grief group, because that's like, boom, that was like a game. It feels like a game changer for you a little bit like, hey, somebody helped me recognize this. And I think the fact that you had someone to talk to who was an apt who was far enough away, to be able to say, hey, it sounds like you've got some grief. And you said, I'm gonna go to a grief group. And I'm not going to be intimidated by that. I'm gonna be scared of that. And then you said, but there was also a caregiver group. So tell me about that.

Unknown: 47:22

Well, just let me mention quickly that grief groups are for people who are dealing with loss of any kind, right? And so when you have a relationship with somebody who has dementia, the relationship as you know, it is lost, it shifts into something new. So it's, I think people might feel that it's insensitive to say that there's loss or you're grieving, or you don't do that until they're, they're gone. It's like, No, you can do it while they're still around. Absolutely. It does. It's it doesn't take anything away from how much you love them, or how much you care for them. But yes, caregiver groups are really interesting. You know, I attended three different caregiver groups until I found this one. And for me, what was really important was this one that I finally ended up with, it's all men, so male caregivers, most of them had wives with dementia. There were only a couple of us who had a parent, but it was mostly men who had wives with dementia. When I went to these other caregiver groups, they were led by women. They were attended by exclusively women except for me, and they would they were pretty condescending. They'd be like, oh, where's your mother? How about your sisters? Is your wife taking care of your dad? It'd be like, No, I'm the child. I'm doing it. And they'd be like, oh, oh, that's so wonderful. And it was just something. I didn't find it to be supportive at all perverse

Natalie: 48:47

sexism.

Unknown: 48:48

Well, yes. It was very interesting, because I just wasn't taken. I don't know. It wasn't I can't say it wasn't taken as seriously. That's not really the right framework for this. But it's, it says if I was still just on the sidelines of caregiving, I wasn't really a caregiver. I'm like, No, my father's living in my home. I have his I'm the legal person for all of his financial and, and medical decisions. The same as you. But then when I found this all men's support group, caregiver support group, I walked into it, there were like 30 Guys in it. They meet once a month in person once a month on on Zoom. It's local here in Orlando. It's wonderful. It's just and you have there are these men who their wives have passed, and they still come because they want to be available for the men who are just entering into the grease. Yeah, the grease that comes when you're in your golden years and you can't live them how you thought you were going to live them. And you want to you don't want to put your wife in a nursing home because it's terrible, it's the last thing. And they say these older men, these wiser older men say, That's what I thought too. But my wife actually thrived in the nursing home. Because she was doing activities and events and making friends, keeping her at home and heavy. It's like, it was the opposite of what people think like no, there, there actually are opportunities for these for their spouses to thrive. And so they're able to support each other. And even though my situation is different, mine's a dad instead of a wife. It's a wonderful group of men. very loving, very kind. Yeah, wonderful group. You

JJ: 50:38

know, Xander, I'm so glad you call that out, though, that finding a group that fits who you are, is so important. Because same thing for us, we're caring for a mom, it's very hard for us to sit in a group or listen to the story of a woman, caring for a husband is totally different. I don't think the male caregiver is given enough credit. And we talk about this, because when you look at the numbers, they're all these females, the majority of them, they're females, but I think there's so many men that don't identify there's so many people that don't identify it, but so many men that don't think about it, because men traditionally have they've done this hour, I know this is a traditional view, but they've they've done this, they've done the salary and they brought home the bacon or whatever that is, you know, all that that cliche stuff, but they don't identify as that. And we love talking to male caregivers, because the feelings and I guess there's just so much more to it, there's so much depth to it, but it's not recognized and there's not enough information out there to share. And so if you're another male covered caregiver out there, you need to know that it's, it's okay that you know, you're caring for your dad or whomever you're caring for, you're okay to not be okay, that it's it is it's hard,

Natalie: 51:50

and you're gonna have thoughts and feelings and emotions that are gonna fit, you're gonna feel lonely too. And it's okay. Like, it's like you have permission. These are all normal things you're going to feel, but society makes it hard, because of traditional role expectations and what is expected. And so much, man. Okay, Sandra. So we're gonna have you come back, like, I love you, I want you to come back, because there is so much more that I want to talk about. Right? And so I have one last burning question. Because this, we normally do sister questions, but man, you are just juicy, like all kinds of great info for us. And I just, I have so appreciated this conversation. There's always the one question I want to ask. And I'm selfish, and I'm going to do it. What is your favorite? Guilty pleasure? I know it sounds crazy, after we've been talking about all kinds of serious stuff. But what is the one thing that is just for you, that you do for you,

Unknown: 52:47

I take walks and listen to podcasts. It's my my time, I just put in the earbuds, I turn on a great podcast, and I go for a three to five mile walk around a beautiful lake in my neighborhood.

JJ: 53:02

I think that's that's something he learned early on. It's like it's made time back off.

Natalie: 53:07

You know, I just, you know, for everyone listening, it's kind of like are watching this because this is so much fun. I always recommend people watch this on YouTube, because then you really see our facial expressions, and Jake and I are alike. And so but I think, you know, it started, your dad gave you that gift. In childhood. It's really that regulating and you're, I think that's a gift that you were exposed to so much and things that help with regulating. So I just I think there's so many things and then all the things you've learned, but that you're so mindful to apply them to your everyday life. And you have Margaret who we love you, Margaret, because Margaret is also probably a very calming, regulating, balancing rock course. Right? Absolutely.

JJ: 53:52

I do want to say that there are a lot of resources that Sandra has brought to us there are also a lot of organizations that he works with that he speaks with. And we definitely will have those in the show notes because we want you everybody all listeners to be able to find those those resources and or that really weren't available when you needed to be able to grab them fast. But as Andrew we are he asked to come back. Without

Natalie: 54:17

question. I already know he's coming back because we have so much more to dig into. We really are Oprah. Thanks.

Unknown: 54:24

I had a great time. And I'm definitely looking forward to coming back.

Natalie: 54:28

Wonderful. Alright guys, thank you so much and until we confess again. Well, friends, that's a wrap on this week's confession. Again, thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find a video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry all the details. are included in the show notes below. We'll see you next Tuesday when we come together to confess again, till then take care of you. Okay, let's talk disclaimers. You may be surprised to find out, but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I at Confessions of a reluctant caregiver have taken care in selecting speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors, or hosting company. This podcast is copyrighted and no part can be reproduced without the express written consent of the sisterhood of care, LLC. Thank you for listening to The Confessions of a reluctant caregiver podcast.