Season 1, Episode 4
The Caregiver Trending podcast features discussions on caregiving topics, interviews with thought leaders, and provides expert advice for caregivers from Homethrive’s in-house Care Guides. Episodes are available on Apple Podcasts, Spotify, or wherever you listen to podcasts.
Our interview today is with award-winning social worker and speaker Zander Keig.
Zander Keig has over 31 years of experience as a consultant, trainer, and speaker, specializing in wellness, leadership, emotional intelligence, social and emotional learning, inclusion, and belonging. He is also a Board Certified Transgender Care Specialist and a Licensed Clinical Social Worker in California and Florida.
Zander is co-founder of the LGBTQ Caregivers Center and is on the advisory board for the Rise Registry Research Project. He is also host of the Umbrella Hour Podcast and the owner of Third Space Press. A proud Coast Guard veteran, he has received multiple awards and honors, including the 2023 Caregiving.com LGBTQIA Advocate of the Year, the 2020 NASW National Social Worker of the Year, and the 2018 NASW CA Social Worker of the Year. His new book, The Third Space: A Nonconformist’s Guide to the Universe is available now.
Today, we hear how, in addition to everything else, Zander became a caregiver for his father as he began to show signs of dementia.
Episode Transcript
Ali Habashi: So Zander, this is not the first podcast you’ve been on. And when I was doing research for this episode, we’d already worked together a few times on the Homethrive content that we do, so I thought I had a pretty good understanding of your biography, but I swear every time that I read or listen to another interview, I learn something entirely new about your life.
So what I want to open with is this, just a short history of Zander Keig.
Zander Keig: Well, that gets harder and harder the older I get. I’m almost 60 now, so it’s like, how to encapsulate so much of my life? But you know what, this is not the first time I’ve heard somebody say that, Ali. People, most of my adult life at least, have said to me, “Every time I’m around you, I learn something new about you.”
So, I’m not sure what that says, but it’s something that I’m very familiar with hearing. So I grew up in Torrance, California, which is part of Los Angeles County. I was raised primarily by my father as a single parent. My father was born in Mexico, so I am first generation Mexican American. He was in the Marine Corps, so I was raised with a strong emphasis on rule following and the military being very popular in my family.
He had four older brothers. They all served in the U. S. military.
At age six I was given the MMR vaccination. That’s measles, mumps and rubella vaccination to start first grade. I had an adverse reaction to that vaccination and ended up with encephalitis, which is a swelling of the brain, which led to seizures and paralysis and blindness all on the left side of my body.
I was put into a medical coma or medication induced coma for about two weeks because the seizures were so severe that they were concerned about damage to my body. I then spent about two years in physical therapy, occupational therapy, and speech therapy to be able to rehabilitate back to a new sense of normal.
I had to learn how to talk again and walk again and read again. Everything. I had to learn everything all over again and then go back to school. I didn’t go back to school until third grade. Actually, I missed first and second grade, but I did have tutors to bring me up to speed.
I also had what were called learning disabilities. I was tracked into special education and dropped out of high school and spent a couple of years hitchhiking around the country before I joined the military.
I served in the U.S. Coast Guard and was medically discharged from the Coast Guard.
I’ve been married for 22 years. I went off to college and graduate school twice and also seminary, so I have three graduate degrees. I traveled around for that schooling. I went to college in Colorado and graduate school in Florida and both of my other two graduate degrees were in California, one in Berkeley, one in San Diego.
I now live in Orlando, Florida and I’ve been here for about five years now. So there’s so much more I could say. I guess I could mention that I’m a trans man, and so what that means is that at age 39, I started a medical transition, which included and still includes testosterone treatments. I’ve also had some surgeries and you can tell from my voice that I have a very deep voice that testosterone did that. If you could see me right now, you’d see that I have a big bushy beard and I’ve lost most of the hair on the top of my head, which is pretty sad. But that’s what happens with testosterone to some of us.
Ali: At least you’ve got the big majestic beard.
Zander: I love it. I love it. And you know, I’ve never shaved, not once. I’ve never shaved my face. So I just go to the barber shop every three weeks and they trim it up. I don’t even own clippers.
Ali: I keep trying to convince my brother to grow out a Viking beard that he can braid, but he won’t listen. So I want to talk about caregiving now because you were a caregiver for quite a while. So how did you become a caregiver yourself? Was there a moment that you realized this is the role that you were about to fill or was it kind of a slow evolution into that position?
Zander: It was quite sudden actually. A bit of a lead up to that is that in the summer of 2018, my father was scammed out of $18,000 through a connection on Facebook that he thought was a friend of his, but I think that that account had probably been hacked into. And so that was the first red flag because my father was a brilliant man.
And so for him to get scammed like that didn’t make any sense, because once I started talking to him about like, how did it happen, and how much money, and how are you communicating with them, I was thinking, oh, something’s not right with my dad. But even though I’m a social worker, I don’t social work at home, so I wasn’t looking at it through a social work lens.
I was looking at it the lens of, you know, an adult child worried that my father just got scammed out of money. Then in December of 2018, my wife and my father and I all moved to Florida.
About two days after my father got here, we went into the business center in our apartment complex so that we could print out some documents to go to the DMV to get new identification cards and new driver’s licenses, and my father couldn’t figure out how to double click on the Chrome icon on the desktop to get into his email, and my father was a computer engineer, so I was like, well now that’s strange that he can’t do that.
I had to talk him through how to use the mouse, which was unusual. He had used a mouse for a couple of decades, two or three. And so that was the first sign that something was not right with my dad. And I said, you know, dad, now we’ve moved to a new city. We both need to go to the VA and get enrolled and get our primary care providers assigned to us and go have a first appointment.
And I thought I’m going to go with my dad to that first appointment. And that’s when it was official. They did the little, mini mental examination and my father failed it miserably. And so they said, we think your father might have dementia. And then they sent him for some testing to verify that. So that was in February of 2019.
And it was presented to me at the time like you’re going to need to take care of your dad, right? You’re going to need to watch out for him because he’s not able to do that for himself very well. So I got him enrolled in adult daycare. And we got him the bus route to go back and forth, the little bus that comes and would pick him up and take him to daycare and bring him back.
And so for the most part, he was being taken care of through the VA and adult daycare. I was mostly involved in things, you know, just in the evenings and on the weekends. And that was until the COVID-19 lockdowns happened, everything changed then.
Ali: What was that transition like? Because I know with COVID-19, some of the first scary headlines that I was reading about was senior care homes, and I can only imagine that it was the same with the daycares and things that you were relying upon.
Zander: Yeah, they shut down the adult daycare and they also shut down the buses and they shut down everything in our apartment complex. The gym that my father went into every morning, the community area where he could get his free coffee, tea, or hot chocolate every morning.
So he couldn’t go interact with the concierge desk anymore. So everything changed in that respect. And my wife and I were both working as psychotherapists at the time. We were sent home, and so we were working from home, and so we had a 79-year-old man just milling about in the house while we were trying to have private and confidential sessions with our clients.
It just wasn’t going to work out. And thankfully, the adult daycare program that the VA was sending him to was a house that had six bedrooms that housed people that were there for medical respite stays. And then they also ran the adult daycare program at that same location.
And so they called me up and said, we’re closing, today’s our last day. It was like a Friday when they called and they said, if you’d like, you can bring your father here on Monday and he can stay in that other bedroom. And, the VA will pay for the adult daycare part, like the day charge. And then you would just need to pay for the overnight charge.
And so my dad stayed there for six weeks. So he had his own private bedroom. There were only six people in the house, including, not including the owner and her husband. So there were eight of them. They didn’t have people coming and going so nobody got COVID. My father didn’t get COVID until December of 2023.
Ali: Oh, wow. That’s nice. Well, not nice, but yeah, but it’s nice. He avoided it at the early steps.
Zander: He did. And that was like going from the medical respite into assisted living and into nursing care. So he was quite fortunate.
Ali: In and out, several different places. Okay, so you mentioned that you weren’t looking at your father from a social worker sort of standpoint. Once you knew that caregiving was on the horizon, that that was sort of the next step, did you pivot and start to look at it more as a social worker?
Zander: Well, I had no training in geriatric social work. So the best I could do is fall back on my training as somebody who was an advocate, somebody who knew how to find resources, somebody that was trained in warm handoffs to people who were more prepared or better trained to provide whatever my father was needing.
And so I began to put all of that into effect and finding every resource I could find and enlisting as much assistance as I could in getting him taken care of.
Ali: Between that role as a caregiver and your work as a social worker and as an advocate, what lessons do you plan to take with you as you yourself and your wife age?
Zander: Well, I can tell you that this experience has impacted our decision making in a big way. One of the things that we’ve decided to do is to move into a life plan community, or what used to be called a continuing care retirement community. They’re probably in every state in the union, if not most states in the union.
And these are places where you can move in when you’re still independent. Some of them are age 55 and up, some are 62 and up, some are 65 and up. It depends sometimes on the company and sometimes on the state that they’re located in. What you do is you move in when you’re fully independent and you’re just living in a retirement community.
And the differences between a life plan community and a traditional retirement community is that you age-in-place. So in some of them, when you get to the place in your, in your life where you need maybe some in home assistance, they have staff that provide that assistance to you. Perhaps you need assisted living.
Well, then you just move into the assisted living unit in the same facility or to another building on the same campus. When you need, if you need nursing care, there’s a nursing home on site with most of them. There’s memory care provided. There’s hospice provided. So there, you basically move in. You have to be fully independent when you move in.
You have to be able to take care of all of your ADLs or activities of daily living in order to move in. And then any needs that come up after that point are taken care of on site. Now, if they have to send you out for care, then you just come back. If you have a surgery or you have a prolonged stay in a hospital, when you’re ready to return back, you would just go into the skilled nursing room or facility on site before released back to your own private apartment, if that’s where you’re living at the time.
So we’re really serious about moving in. It’s an investment. Financially, you buy into those kinds of communities, but I’m 10 years older than my wife. So, not having to put my wife through the challenges of figuring out what to do with me when I’m still able to be at home and maybe dealing with some physical or cognitive issues and then how to get me into maybe independent living or assisted living and then nursing care.
Having gone through that myself now and her witnessing me going through that. We’re both not interested in having to do that for ourselves. We want to be able to just move into a place and have professionals take it from there.
Ali: That makes a ton of sense. It sounds like a good balance between sort of aging-in-place, which I think a lot of people just assume is staying in your own house and not ever moving, and moving into a senior facility of some sort. So it sounds like a nice balance.
Zander: Well, oftentimes what ends up happening is even people who are in couples end up getting isolated because maybe for mobility issues or financial reasons, they don’t venture out of their house very often. And so, and maybe the people around them are moving away, they’re moving back by their children, or they’re moving into retirement communities.
And so they’re losing their local connections. And so isolation is one of the things that makes aging even more difficult, right? Isolation impacts our physical, our mental, and our emotional health in ways that we don’t even really fully understand now, but the World Health Organization has sounded the alarm on how isolation impacts our health.
And so, moving into a retirement community or a life plan community means that you’re going to be surrounded by other people, approximately your age, and I’ve gone to a number of these places and listened to their, their presentations and looked on their websites and talked to their residents, and it’s unbelievable the amount of activities they provide.
It’s like they not only have a fitness center on site with trainers, they also have a couple of dining rooms and maybe a pub and they have a movie theater and a chapel and they have all kinds of resident community groups where they get together, maybe one for veterans, one for people that do puzzles, another for people who want to sing or put on plays.
I mean, they’re very active. So you won’t be isolated when you go into those environments, which is also something that’s of interest to us, to be able to be around, not necessarily like-minded people, that’s not the guarantee, but individuals that we can, you can at least, maybe play a game of pickle with, or watch a movie with, or join a book club with.
Ali: This sounds incredible. This sounds like college.
Zander: Well, that’s exactly some of the comparisons that I’ve heard people make who move in to like planned communities. They’ll say, it’s like being back in the dorms. But of course it’s a bigger, nicer, not-shared space.
Some of them actually, they’re not just apartments. Some of them are homes there or townhomes. I said it’s a buy-in process. Some people buy like a house with three bedrooms and some people have like a one bedroom apartment and other people might have a townhouse or a duplex so they’re very there.
It’s like living in any other community. It’s just that everybody goes to the same two or three dining rooms to have their meals.
Ali: All right. Well, that’s us sorted. That’s my plan now to thank you for that.
Zander: Absolutely. No, I’m quite excited about learning about life plan communities. When I first did learn about them, I was surprised that I hadn’t known about them already.
Ali: I do want to continue the conversation on the sort of community track, and I found a bunch of different stats at this point on sort of caregiver demographics, and one thing they all kind of have in common is that it’s usually more women still in the caregiving space than there are men. So this trend has started to shift, especially ever since COVID-19 and the lockdowns sort of forced more men into the role of caregiver.
But I’m inclined to believe that, when it comes to support groups for caregivers, many of them are still women-led, women-focused, and women-attended. So I’m curious, as a man familiar with this caregiving space, what was your experience with support communities? And, where did you find a space that worked for you?
Zander: Well, that was my experience, Ali. I went to, for example, they had a caregiver support group at my dad’s adult daycare program that was run by one of the women that worked at the adult daycare program, and all of the caregivers that attended the meeting were either wives or daughters of individuals who were at the adult daycare program, and I didn’t find that very supportive of at all.
As a matter of fact, on my first meeting that I attended, they asked me, where’s your mom? Where’s your sister? Do you have a wife? Like, where’s the real caregiver, you know? And I said, no, I’m the caregiver. I’m an only child and my mother is deceased. So it’s me. And they were like, oh, you’re such a good son.
And I thought they don’t talk to each other that way. I wasn’t the only person that was there for the first time. So they didn’t say that to any of the women that were there. Oh, you’re such a good wife. It’s almost like, for them, it’s expected. And for me, it’s this big thing that I’m doing.
And I didn’t like that. I also didn’t like how they just make the assumption that women are the default caregiver. I think part of it is terminology too. You know, it’s the same as when I worked as a social worker at the Department of Veterans Affairs, we used to talk to people about, like in the hospitals, in the emergency departments or in substance use treatment centers.
And they would say, you know, we don’t get very many veterans coming in. And I was like, you do. They’re just not saying they’re veterans. Well, we ask everybody if they’re a veteran. And I said, instead of asking them if they’re a veteran, ask them if they’ve ever served in the military. You’ll get a lot more yeses.
People think veteran means served in combat. And so I think it’s the same with caregivers and with men. Because I eventually found a men’s caregiver group, and specifically caregivers for Alzheimer’s and dementia related, issues. So we’re talking there between 25 and like 45 men would show up every month in person at these meetings.
And one of the things that I noticed is it was similar. They didn’t refer to themselves as a caregiver. They were the husband. They were the son, they were the brother, right? They did not call themselves a caregiver. It wasn’t a label or a title that they used to describe who they were in relation to the person that had the dementia or Alzheimer’s.
And so I think it’s one of the clues that there probably are many more men who are providing caregiving to family members and friends and loved ones, especially in the LGBT community. There is going to be peer-based caregiving happening, but they’re not going to refer to themselves as a caregiver.
They might never show up at a caregiver support group. It just doesn’t dawn on them to do that. But I can tell you at this caregiver group, this men’s caregiver group, I went for about two years, and I really enjoyed it. The men were very raw, and they asked for guidance from each other, the gentleman who had been going through it longer, or maybe even their person had passed and so they still kept coming to the group.
I called them caregiver emeritus, right? They still came to the group to provide that wisdom that they had gleaned from their experience, and it was invaluable. It really was, because there wasn’t anything they hadn’t heard before.
It was a large enough group, and it had been going on for a long enough period of time that there wasn’t any new information. It was going to be new to the individual. It was new to me. I didn’t know how to be a caregiver for my father who had dementia. I had never planned on being a caregiver for my father because I never thought my father would ever get dementia. We don’t have dementia in my family.
I also didn’t think he’d ever end up in a nursing home, in a wheelchair. My father was a lifelong marathon runner. So his physical well-being, his mental well-being, everything was really robust. And then all of a sudden he’s stricken with dementia and lands in a wheelchair. So it was unexpected.
So for me, that was new. But for the people in the room, when I shared that, they were like, oh yeah, that’s what happens when the body starts breaking down. When you have the dementia, it’s impacting your mind and the brain impacts your body. And it’s like, oh, okay. Now it makes sense when you think about it.
But for me, I was like, what’s happening to my dad? And so I was able to be not only comforted, but also just given some information about this is what happens. It was almost like I was in a palliative care support group. Like, here’s the trajectory of dementia, generally speaking, and this is what you might start see happening, so it doesn’t catch you off guard.
It was, it was really a helpful space to be in for those two years.
Ali: It’s really helpful, and I know this from experience, to have a group that can kind of point at something that’s abnormal, or something that’s happening in your abnormal experience and say, that’s normal. Like, I know it doesn’t seem normal, but it’s normal. It’s part of it.
Zander: Yeah, because we don’t know. If we haven’t experienced it before, it’s going to be unusual to us, our abnormal. And so to have somebody come and say, oh yeah, no, I experienced that. Oh yeah, me too. Oh, me too. Then there is something, you know, the word that we would use nowadays is affirming, right?
It’s so it can make us feel like we’re not alone in what we’re going through, even though being a caregiver can be a very lonely experience.
Ali: Oh, yes. Oh, yes. That’s, that’s a huge part of what we try to solve for at Homethrive. And, you know, we try our best, but isolation is just sort of something that sometimes happens naturally to caregivers, and to have that space that you could find, and I’m glad you found that space, especially because you were sort of exploring these different communities and you found out what was uncomfortable and what was invaluable in the end.
So I’m glad you did find that space.
Let’s talk about the LGBTQ caregiver center.
Speaking of, you know, more communities and more help, you’re the co-founder. So I’d love to hear a little bit more about the inspiration for starting that along with what it offers and how it helps.
Zander: Sure. Well, you know, when my father was first diagnosed with dementia, I did some research. I mean, not like academic research.
I just read up on dementia and what might happen in that really basic way. And I thought, oh, okay, so the memory is going to be impacted. So I had heard about with Alzheimer’s, they forget everybody around them. They don’t know that it’s their spouse who’s with them all the time.
They’re like, who are you? They might even think they’ve been kidnapped by that person. And so I thought, okay, I need to, I need to reach out to my community, meaning the trans community and say, okay, how have you dealt with this? Right? Because not only is my father going to forget me, he’s going to forget me twice.
Because as an only child who transitioned when I was 39, That means the majority of my life, with my father, I was his daughter. So, the last 19 years I’ve been his son. And so he got to the point where he didn’t remember that I had transitioned. He didn’t know who I was when I came to visit him.
He would ask the nursing staff, like, has my daughter come to visit me? And so they would tell me that, you know, do you have a sister? And I’d be like, oh, I’ll go talk to my dad, because I didn’t want to tell the staff that’s private information.
I would just talk to my dad. What’s your daughter’s name? Where does she live? What’s a memory you have of her, something like that. And that would get him talking, but eventually he even forgot that he had a daughter, that he had a child at all.
I thought maybe there are other trans people who have had this experience. And I’m pretty well connected. I mean, I’ve been in the community for 20 years. I’ve attended workshops. I’ve spoken at conferences. I’ve lived all over the country and interacted with thousands of trans people. And I put out my feelers and I said, hey, who’s gone through this experience?
Not one person responded to me. I know I’m not the only person with this experience, but I just didn’t get anybody who responded back to me. And so I reached out to another social worker. Her name is Jennifer Haines. She was part of the department of veterans affairs. She worked there for 20 years and she was part of the executive team that set up the VA’s caregiver support services.
I said, I need some help figuring things out with my dad, legal stuff like elder law attorney, and she helped me with that. And I was telling her about this experience of being trans and being forgotten twice and not having any peers that were had responded to my inquiries, and she said, well, why don’t we start something?
In June of 2021, we started the LGBTQ Caregiver Center. It’s a virtual resource hub, and what we have available are links to the rise registry, which we’ll probably talk about in a little bit and also yoga for caregivers, which is Jennifer’s company. She has hundreds of yoga instructors that volunteer their time to lead.
You know, two minute, five minute, 30 minute, 60 minute yoga sessions for caregivers. And, so we make that as a resource for people for relaxation and respite. And also some socialization as well, even though it’s virtual. And then we’ve been partnering with other, organizations on doing trainings, to educate people on what is the difference between an LGBTQ caregiver and a non-LGBTQ caregiver.
Then we partnered with a organization in Arizona called Duet, and they are now running twice monthly a virtual LGBTQ caregiver support group that people can learn about through the lgbtqcaregivers.org website to find out how to get registered for that so that they can attend those virtual groups.
We also have a Facebook group, LinkedIn group, Instagram. And so people are contacting us on a regular basis saying: I’m a caregiver. I don’t know what to do. I need support. And so we’re able to connect them in with our community that is on Facebook and then also send them to that support group that’s available for them virtually.
Ali: All right, you mentioned the RISE Registry Research Project, and I definitely want to talk about this.
So, can you tell us a little bit about what it is and the importance of projects like these for education and advocacy?
Zander: Absolutely. So Rainbows of Caring is a NIH funded, multi-year, multi university research project that’s focused on LGBTQ caregivers of individuals with Alzheimer’s and dementia and related conditions and the RISE Registry was created as part of this project and what the RISE Registry is striving to do is to increase LGBT representation in Alzheimer’s and dementia and other related conditions in research.
So any researcher across the country, maybe even the world, who’s looking for participants in their research and would like to include an LGBTQ perspective in their research, they can go here. I think they have to enroll in it, but as a researcher not as a participant to be able to be granted access to it.
Then they can reach out to the people that have registered in the RISE Registry. And then individual participants can say yes or no to any inquiry they get from a researcher that’s doing that research study.
Ali: Awesome. Alright. Well, you know what? I think we’re at the top of the hour now. So I just want to say, first of all, I can’t believe I’ve learned even more stuff about you after this interview. I thought I knew it all. But thank you so much for joining us. And thank you for telling us about the book, your incredible life, and your caregiving experience. I hope we can work together again and, thank you for coming.
Zander: Absolutely. Thank you for having me on the show. And I’m just so happy I’ve been working with Homethrive for a little while now on a different projects. And as soon as I learned about Homethrive’s existence, I was thrilled.
I’m like, wow. An employee benefit plan that focuses on caregivers. That’s exactly what I could have used. So I’m just so happy that that you exist and you’re available to the employees of the companies who have your plans.
Further Resources
- The Umbrella Hour Podcast
- The Third Space: A Nonconformist’s Guide to the Universe
- LGBTQ Caregivers Center
- The Rise Registry Research Project
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