Episode 388 Elisa Glass Navigating Life as a Caregiver Transcript

This transcript is from episode 388 with guest Elisa Glass.

Scott DeLuzio: [00:00:00] Thanks for tuning in to the Drive On Podcast where we are focused on giving hope and strength to the entire military community. Whether you’re a veteran, active duty, guard, reserve, or a family member, this podcast will share inspirational stories and resources that are useful to you. I’m your host, Scott DeLuzio, and now let’s get on with the show.

Hey everybody. Welcome back to Drive On. I’m your host, Scott DeLuzio. And today my guest is Elisa Glass. She’s a dedicated caregiver to her husband, a hundred percent disabled veteran, and A remarkable advocate for caregivers and individuals with rare autoimmune diseases. And Elisa’s journey is one of resilience, strength, and unwavering dedication to supporting others facing similar challenges.

And we’ll get to talk about that in just a minute. But first I want to welcome you to the show, Elisa. I’m really glad to have you here.

Elisa Glass: Thank you for having me, Scott. I’m really happy to be here. I appreciate it.[00:01:00]

Scott DeLuzio: Yeah, absolutely. So, um, before we kind of get into. The nitty gritty of what it is that you do and how you’re helping other folks. Uh, can you share a little bit about your experience as a caregiver, uh, to your husband and, you know, some of the maybe unique challenges that you faced in this role and how you’re, you’re navigating them?

Elisa Glass: Absolutely. And, um, one of the things that I really am pushing for and why autoimmune disease is in correlation with caregiver is that I had not identified myself as a caregiver. I was just thinking, you know, I’m a spouse. This is what I do. You know, I’m okay with this. I became overwhelmed. The stress was phenomenal because it turns out that you’re on call 24 seven.

It’s not like what some people would think. You know, you get the nights off. No. If, uh, he suffers from insomnia. So guess what? I’ll be suffering from insomnia. So it was very difficult to navigate in the beginning, especially [00:02:00] not identifying as one. So what happened to me in 2016, the pressure, the stress of taking care of him.

I was a professor at a university. I was running a store. Um, My body gave out. Within four days, I was in the emergency room and it was a four month stay. The stress triggered, obviously, this autoimmune response that is rare. Obviously, it’s chronic. It’s not going anywhere. And that was a difficult time for me.

And in the hospital, my body was just like a lump of flesh. I couldn’t eat, couldn’t swallow. I was paralyzed and I was in excruciating pain. But luckily, my mind was still functioning. And I really had to think about what was going on in my life, what happened. I was an avid runner, I was really healthy, I was very, you know, things were great.

And then this happened. And while I was laying in the bed, ill, I was still concerned about my [00:03:00] husband. Is he going to eat? Is he going to walk outside without shoes on? I, you know, that, that wheel just keeps going. So I, I was really fortunate. I had a neuropsychologist who was assigned to me that actually started to help identify who I am, what I was doing, what’s going on.

My husband was at the hospital every day, faithfully, obviously that triggered a lot of things in him. That we had addressed when I came out, but it was a difficult time, but it was a big learning experience for me, for sure.

Scott DeLuzio: I can imagine. Yeah. And as you were talking about, um, uh, always being on call to me, kind of, kind of resonated with being a parent. Um, you know, when you have a newborn baby at home, you’re always on call. You’re, and I’m not, I’m not trying to like minimize what you you’re going through in, in what I’m saying here.

Uh, in, in any way, what I’m, what I’m [00:04:00] trying to say is that, um, as a parent, You kind of expect that you have, you have a newborn, they’re kind of helpless. You need to do everything. You need to feed them. You need to change them. You need to clothe them. You need to keep them warm and safe and, and happy and healthy.

And all the, all the things that, that go into it, you know, take them to doctor’s appointments, uh, you know, uh, you know, putting them down to sleep and, and all the things that, that go along with it, they’re helpless. And you kind of know that going into it, because I mean, you’ve never seen a baby get up and just like cook himself breakfast or anything like, you know, what, what to expect, but in your case, um, you know, you, you have an adult who, you know, in, in theory should be able to take care of himself, but then, you know, something happens and all of a sudden now you’re in a place where you do need to do things for him that maybe you didn’t have to do before.

And that. Yeah. [00:05:00] Again, to your point, uh, you know, when he has insomnia, you have insomnia. And that, that I think is the line that, that kind of triggered the, uh, the parenting thought because you never know when kids are going to wake up, uh, you know, in the middle of the night. Um, but you know, that type of thing is hard, especially when you have one.

All these other expectations of you, you know, work and, and, you know, your career, your, your home life, you know, everything else that you are, are doing. Um, and if none of those things kind of gets dialed back a bit and you’re going a hundred percent at everything, of course, you’re going to have some sort of burnout at some point, right?

Elisa Glass: You know, absolutely. And it’s so, you know, most people try to correlate, they try to figure out what is it that a caregiver is going through, especially with a vet. And um, it’s, it’s not easy at times to explain. I do use the issue regarding, you know, children and [00:06:00] stuff. And the thing is, is that you bought into that.

You prepared yourself for that. You know, this is going to happen. You don’t see that coming in a relationship with an adult, your spouse. Okay. And yes, there is some behavior that you feel, wow, I’m dealing with someone who may not be his age at this moment. And then there are times. When he’s there, when he’s there again, and I see the man that I’m in love with and I married, you know, it’s like, Oh, this is great.

And, and you get excited and you get happy and then boom, you crash again because something happens. So that is the big major difference is that, yeah, you’re right. You slam into this relationship and it’s hurtful. You mourn and you realize you’re losing and it takes a while. If ever, to get where you’re going to be and how this relationship changed, you know, so, yeah, using the analogy of a child is perfect.

Scott DeLuzio: Yeah. And what you just said there too, uh, [00:07:00] is a good, uh, another good difference there, because when a new. Child comes into the world, it’s celebrated. That’s, that’s something that’s, uh, a positive thing. It’s, it’s happy. It’s, it’s joy, a joyful occasion. Um, but like you were saying, you were in a state where you were kind of mourning, uh, what once was.

There’s a period of grief and loss. And, um, you know, there was, uh, maybe hopes and dreams of things that you might’ve been able to do together or, or whatever, uh, you know, the lives that you’re, you’re trying to build together, um, and, you know, it’s, A lot of that maybe got changed, uh, because of the situation that, that you found yourselves in.

Um, not, not to say that it’s, uh, it’s all bad. I don’t, I don’t want to say that because you know, there’s obvious, obviously still love there and there’s, there’s all of that. Right. Um, and, and so, you know, Thank God there, there, there is that, right. But, um, there’s, there’s also those, those, the way things were [00:08:00] kind of gets, um,

Elisa Glass: You mourn,

Scott DeLuzio: in that.

Yeah. You’re mourning. Yeah,

Elisa Glass: and you grieve it. And you grieve it because when, in a way, when you signed on to marry this person, that’s part of what you were signing on for, to kind of think, oh, I’ll have this for the rest of my life, you know, and, and you’re in having that vision and, and yeah, you know, we’re always going to be able to talk and do this and do that.

Then all of a sudden you realize that, you know, Okay, that’s impossible today. I may get lucky tomorrow and you realize you do, you lose a lot. And it took me a long time to realize that I was in a continuous mode of grieving and mourning. And I had to really work with that and, and which brought in a lot of what I thought of mindset therapy in particular, because you just don’t think about a lot of things that you go through.

You know, because you’re thinking I’m being a good wife or a good husband, I’m here, I’m supportive. But you forget to support yourself. [00:09:00] You forget to remember to love yourself because you become so giving, you know, and that’s what happens. Right?

Scott DeLuzio: Yeah, exactly. And, and there’s, uh, you know, the, the mindset that, you know, you can’t pour for from an empty cup if you’re not taking care of your, yourself, then. You know, how are you going to be able to expect that you can take care of somebody else if, if you’re physically, emotionally drained? Um, so yeah, you, you do have to take time for yourself.

Um, and, and yeah, caring for that person, that, that loved one can be emotionally and physically, uh, demanding. Um, and, and in your case, you know, there was that, that, Period where you couldn’t do any more. You were, you were, uh, you know, at that point, um, how do you, you mentioned that there was that mental side of things when, when you were in the hospital where you were, uh, still, still on, you’re still on duty, if you will, [00:10:00] um, and you were still thinking through all of the things that, that needed to happen or could have happened.

How did you manage afterwards, uh, all of the stress and demands of, of, uh, Caregiving while also taking care of yourself.

Elisa Glass: Well, I definitely had to get educated on what caregiving was. I became a lot more active, um, in the, in, you know, trying to find out what are the services for vets. Uh, there was so many things to learn. And one of the things I did was, um, join this, uh, caregiver program with the VA. And I, at that time I was living in New York and it was in Castle Point.

And when I was in the caregiver program, they had a lot of other webinars, you know, to really understand what my role is, what’s happening, that grieving is part of the process. There’s so much education in there that is not mainstream. And that’s difficult because [00:11:00] if you don’t know where to look, you’re not going to get the information.

How are you going to know? You don’t know. And it’s, it’s just becomes interesting, but that motivate me to learn more. Simultaneously learning about a rare autoimmune disease that I had acquired. So I became, um, I’m now, believe it or not, 100 percent disabled as well. Um, you know, my body doesn’t function like it used to and I have to be careful of flares.

But I, my mindset is different. I’m very positive. You know, I know I’m, I’m in it for the long haul. I’m not sitting here thinking, should I divorce him? Because you know, this is a little bit too much. No, it’s like, okay, let me figure out how I can deal with this person. Yeah. Right.

Scott DeLuzio: the right mindset to have because, um, you know, it’s not going to get any better for anybody if, if, if you, you kind of go that direction, uh, you know, the way you were just describing and, um, you know, When you bring two people together, uh, they’re, they’re [00:12:00] supposed to be able to help each other out in, in good times and, and

Elisa Glass: it’s

Scott DeLuzio: bad times.

And, and this just happens to be one of those times where it’s, unfortunately it’s, it’s, not, it’s not ideal. It’s difficult. Yeah,

Elisa Glass: It was definitely a critical time in our relationship and in my life, my personal personhood, my life was very critical during that time.

Scott DeLuzio: Yeah, exactly. And, um, so as you. We’re going through this whole process. You, you were kind of discovering that the tools and things that are available to you, programs and all these kinds of things, um,

Elisa Glass: for

Scott DeLuzio: you know, not to, not to add on to your workload, right? Because you had other stuff going on right now, now you got to go do all this research and find out all this other.

Uh, stuff that’s available to, to help you and without finding that stuff now, you’re, you’re just still doing everything all on your own. [00:13:00] Um, so what, what advantages or what benefits were there to some of the programs and, and stuff that you, you discovered, uh, as far as, you know, help for your husband or even for you,

Elisa Glass: Absolutely. I will tell you that during my hospital stay, and it was so severe, I had to give up my career. So my professorship was gone. I had to close the store. That was gone. So in essence, I kind of lost everything that I worked so hard, you know, to create, which was, you know, of course, my career and things like that.

So what happened was being a disabled, classified now as a disabled person, was never part of my reality, my dreams. And here I am at the same time. Being a caregiver. Okay. So what I did learn immediately, the first thing I did, you know, people were helping me to go online. Cause at that time I couldn’t even move my arms, let alone my fingers.

And we were searching about PTSD. We were searching about [00:14:00] things and I started getting information and, and I love putting puzzles together. So in my mind, I’m going, okay, this relates to this, this relates to that. And that’s what started happening. And when I found the caregiver program, I told them I want every course that you deliver.

So what else do you do? So they gave me a list of things. Aromatherapy, uh, the chiropractor, uh, couples counseling. I got us into everything, the Wounded Warrior Program. And I tell you that there was nothing that I did not try and utilize. And a lot of it was absolutely helpful. And more importantly, it was helpful to me.

I needed to change my mindset. I was always a very positive, happy go lucky person, but I was being hit with a wall that I couldn’t understand or identify, let alone. But. It also led me to the Elizabeth Dole Foundation, and I became a fellow, and I am an alumni [00:15:00] now. And there are so many things, there’s a mental health framework, there’s things that they do.

And what I needed to know for me was how can I utilize this information that I’m not finding? Because it’s good to have it. But then what? So I kept saying, now what, now what? So I definitely got involved in things that I knew my husband would do. He’s not, he’s not a people person any longer. So, you know, you know, taking advantage of some of the tickets that Wounded Warrior would send to us.

And, and I, I kind of picked and choose. He loved food. So anything that dealt with restaurants that they had, I took him, which gave me also the opportunity to do something I love, which was to go out of the house, which he didn’t like anymore. So, you know, it’s just him and the dog to go hiking. Oh, that was the other thing.

I was able to find a program and got him a service dog. So yeah. So part of it is learning to know what’s out there to research, ask [00:16:00] questions and then to utilize it. That’s the next part, not to just leave it there as a one day I’ll get to it, you know? So that’s how it’s been working.

Scott DeLuzio: Yeah. And that’s a good point because, yeah, you could do all the research and do all the work to find out all this information and what programs and what services are available, but if you’re not using it, then it’s kind of like you just wasted your time almost. And, and so, So yeah, use that information and, and the benefits that come with it.

But, um, also I think the, the thing that I kind of took away from what you were just saying there is that even if you are rated or classified as a hundred percent disabled, um, doesn’t mean that you can’t do anything, right? Like there’s, you still can do something and I’m not, I’m not. Uh, obviously, I don’t know everybody’s situation.

There may be some people who

Elisa Glass: It’s definitely my situation. So you picked that up from me. Absolutely. And you’re correct. Everybody is [00:17:00] different. And I will share with you, I’ve met women who had my disease that have subsequently passed away. I have not. They’re surprised. They don’t know what it is. I believe this is, it’s, it’s love and, and, Um, my mindset, I’m real positive and I have a strong, a strong identity and faith in what I’m doing and what this is about.

So, I have um, and I will tell you for me, I don’t always accept the classifications. Because when I was in the hospital, they told me, you’re not going to make it out of here. You’re going to die. So immediately, what am I thinking? Oh my goodness, who’s going to take care of him? What’s going to happen? You know, instead of thinking about myself, so I had to kind of go, wait a minute.

And I recognize that, you know, I really believe that they could be wrong. Right? And I, I chicken scratched because I, while I was there, I had another filet and lost my ability to speak and to eat. So I was doing what I call the chicken scratch. They would give me a [00:18:00] pencil or pen and I would try to write.

And I told them, I’m not dying. And I kept my word, you know, and to this day they will see me and they’re going, Oh my goodness, they’re shocked. But I believe that, you know, getting that classification, what wasn’t disabled was my mind. So that’s the difference. Okay. My mind was still functioning. I was able to research.

I’m able to read. I’m able to learn. I’m able to, articulate what I’m learning. And that is my story that I’m able to do that. So I didn’t lose those abilities of critical thinking and things like that. So that’s my personal saving grace. You know, there’s some people who are hit. I don’t know if you heard the term medical PTSD.

Scott DeLuzio: uh, I, I’m not familiar with it. No.

Elisa Glass: Yeah. And it’s something that they’re discussing a lot. I do a lot of lectures and, um, especially with pharmaceutical companies. And, and, um, this is something that they’re tossing around a [00:19:00] lot, that getting sick as quick as I did, losing so much that there is a post traumatic syndrome attached to it.

So they’re doing a lot of programs now to help persons like myself. And it’s quite interesting to kind of see it. But, um, obviously for me, I, I really think that I have been fortunate and maybe it’s because I had the mindset ahead of time that I was going to persevere. I’m going to make it. I had a lot of things to do.

I’m not ready. And that’s what I also do with my spouse. And, um, during this time, unfortunately, one of my sons got ill, Air Force. And now that was another. And so when I looked, I’m going, wow, you know, I really need to research this and see how I can help caregivers. And one of the things was to make sure that I got out there with legislation, that I go and speak as much as I did.

And the VA at Castle Point was really supportive. They allowed me to [00:20:00] create webinars on positivity, direction, um, and talking about the Elizabeth Dole Foundation. So they were really supportive of my work and we got to get it out there. And the first thing is that people have to identify as a caregiver.

That’s your first step, right?

Scott DeLuzio: Sure. Sure. Yeah. And, and, and I want to talk a little bit more about kind of some of the, the, the stuff that you do now as, as an advocate for caregivers and, um, and the tips and tools and tricks and everything that you, uh, are providing to folks. Um, so. Maybe we’ll just start off with like, what advice would you give to, to people who, um, who might be navigating similar challenges?

Uh, you know, as far as being a caregiver, you know, unexpectedly to, uh, to a spouse or to another loved one or, um, you know, finds themselves in a situation like you were in, uh, where, where they [00:21:00] unexpectedly got ill

Elisa Glass: Right. I tell you, the first thing is, you know, it’s really looking at yourself and seeing what you’re doing and to look at the definition of caregiver and see if you fit. And if you fit, then research everything that says and talks about caregiving and the undeniable thing. You must.

Take care of yourself. Believe in those spa days, which is every day, by the way, whether it’s five minutes or 10 minutes, you take that time off for yourself. I really believe in positive affirmations. I believe in doing things that’ll bring color and joy. So I believe in coloring art. You know, I happen to be creative and artistic as well.

But I do believe that if you say it often enough, today will be a great day. Today is really going to be a great day. If you really say that often enough, this, this affirmation, it really does become a great day. Things can go wrong, but your mindset is there. I can handle this. And if I can’t handle this, I will learn how to [00:22:00] ask for, because that’s another thing caregivers don’t do.

We don’t ask for help. We think we’re imposing. We think we’re asking too much and we have to really evaluate. How much we can do. And I’ve learned when I ha I, I need time, I, I gotta take it. And I specifically, since I have a chronic disorder, have to make sure I, I look at the flare ups and everything else and what’s going on, but I, I tell you, um, breathing.

You know, there’s something called Power Breath, which is really wonderful. And you know, the VA does give GGAN classes, a lot of things that are free. And then there’s also online. And because we both got hit with this 100 percent disability, there was a financial crisis. Right. So YouTube became my best friend because a lot of things on YouTube is free.

And so I became the free 99 queen that says, free is for me. So you, you know, you look at these crises that [00:23:00] happen and just, you know, try to make it as possible. Turn it around, you know, and, and just go for it. But never forget yourself. You have to be the primary to yourself. Because who you’re caregiving for can’t take care of you.

This is obvious.

Scott DeLuzio: That’s true. Um. And you do have to, yeah, you do have to take care of yourself because if you’re not, if you’re not up to the task, then that other person is going to suffer as well. And that’s, you know, looking at any caregiving relationship, you, you don’t look at the person like, Oh yeah, well, you know, that we’ll worry about that person another day, you know, you, you, as a caregiver, and I know I’ve been in that, that situation before, uh, myself where you look at the person and it’s like, okay, well.

I, that’s my purpose. I need to do whatever I can for this

Elisa Glass: Right.

Scott DeLuzio: Um, and you’re willing to sacrifice your own, you know, health and [00:24:00] wellbeing and, and all that stuff because you care so much and you love that person so much and you, you just want to make sure that they have the best, but they’re not going to get the best of you if you’re not taking care of yourself.

And so, so you really do need to do all of those things that you just said.

Elisa Glass: Exactly.

Scott DeLuzio: You know, I’m, I’m glad that you mentioned the YouTube, uh, you know, free, uh, you know, stuff that’s available there. Um, and I know you kind of made a joke of it, but you know, in, in your case, obviously with two. A hundred percent disabled, uh, people in the, the household finance, financially things become a little bit more tricky.

Um, and you know, if you’re, if you’re unable to earn the income that you once had before, yeah, you’re going to have to find some resources that are free or very inexpensive. And. You know, YouTube, I mean, you can find information about just about anything on YouTube, and some of it, some of it may not be great information, and, and so you might have to do a little [00:25:00] digging, but,

Elisa Glass: A little bit of digging. Exactly. Absolutely,

Scott DeLuzio: channels on, on there that you can trust.

And you can, you can start following those and get more information from them. And, um, you know, other guidance and feedback and, uh, you know, just strategies to navigate what you’re going through. Um,

Elisa Glass: absolutely.

Scott DeLuzio: I got to imagine that the, the folks who are in the position that you’re in, you know, in a caregiver position, uh, they may feel like, Oh, I don’t have time to go and research and look through all of the, these things.

Right. You probably have that as well. Right.

Elisa Glass: Well, and I’ve heard it often. I don’t have time to do X, Y, and Z, but that becomes part of what you start learning as well. And this is why [00:26:00] if anyone’s a caretaker for anyone who’s in the military that There’s so much that is being given by the VA, but it’s, it’s, it’s not sent to you as a formal announcement.

You have to go to them and get it. And obviously it is all free. And the social workers do really great work. You can even get free therapy, you know, to help you to process what your role is, how you can do it. And time management was something that I advocate for, you know, cause I will tell you something that I caught myself doing.

I would think, oh, I don’t have time, but then I realized I was sitting down and then I was watching consecutive. NCIS. So three hours may have gone by while I’m trying to cook or do something, but I’m going, wait a minute. And I had to look at that because I was not consciously aware of how I was managing my time.

And I had to make it like that in any time of the 24 hour period. [00:27:00] Okay. If I’m awakened by him. and can’t go back to sleep, I find time to do something then, you know, even if it’s coloring, anything that’s a de stressor, you know, so

Scott DeLuzio: Yeah. And so

Elisa Glass: time management.

Scott DeLuzio: I, and that’s a great point that you made as far as the time management goes, because I’m sure even, uh, folks just, you know, scrolling through their phones, uh, you know, looking, you know, scrolling through social media, uh, or, you know, looking at, You know, whatever it is that they may be doing on their phone, playing games or, you know, whatever the phones could do just about anything.

So the sky’s the limit as far as what you might

Elisa Glass: And, and you get lost, time

Scott DeLuzio: you do. Time flies. Exactly. You could be, you could be sitting there and then, you know, a half hour is, is gone. And you’re like, where did that time go? Right. Or, or more, you know, hopefully not, but, you know, it could be even more. Um, but, you know, take a look at your, at your phone and, uh, There are in each phone’s gonna be a little bit different.

So I’m not going to say how [00:28:00] to do it, but you can, you can always look it up and figure this out, but you can look to see how much time you spent on different apps. Uh, you know, whether it’s Facebook or, you know, other social media or games or things like that, you can look to see how much time you’ve wasted on, on those things.

And that will give you an indication of where you can start cutting some time out to go do the things that. Are, uh, required, are necessary for you to, to do, whether it’s researching, like you were saying, or, or things for your own sanity for, you know, uh, taking some time out for, um, you know, to paint or to do some artwork or whatever.

That type of thing you, you gotta make time for, but if you’re spending all of your time scrolling on, on your phone, well, you’re not going to have time for it. So, um, so yeah,

Elisa Glass: you know,

Scott DeLuzio: yeah. Time management.

Elisa Glass: I, I definitely time management is no doubt, but I will say that [00:29:00] why are they on Instagram? Why are we watching three shows consecutive back to back? It’s called distraction. Okay. We’re trying to distract ourselves from what’s happening. We’re on overload and we don’t even realize that we’re doing this.

So my thing has been, well, I’ll tell you what. Talking to myself, of course, Lisa, you want to be distracted? Well, let’s make music less color, less, less right. When I was able to write this, let’s do things that could be productive for me. Okay. And in the beginning I couldn’t take myself for a massage. So I would make sure I find someone, you know, and to drive me for my massage and then bring me back.

And I make sure that, The food was already prepared, that everything was set so that no matter what was said, if I was out of the house, it was already taken care of because you know, you have that forethought, right? So I, I recognize that I had needed a lot of distraction and I, I tell [00:30:00] you very, I, the TV was my biggest distraction.

There was no doubt, you know. And so that I have to work on. And yeah, I cut a lot of hours out of that and created other stuff. And, and so, you know, but part of this, how do you recognize that you’re doing this? How do you recognize, I’m still going to push for therapy? Caregivers need to go in and, and, you know, like I had mentioned, if you’re with the VA, there’s a lot that you can get to support yourself that is free.

And at the time is wonderful now because now they will also do it on Zoom. So you could do it from your home. So there’s ways that you can find things for yourself to do. In the past, you had to show up. Now they’re all about Zoom. The other thing for people who are caregivers that are not connected to the, let’s say the VA, there are still things that you can find to do.

There’s still so much support. Just go online and start Googling. And once you identify as a caregiver, you [00:31:00] will see. Facebook is a great thing. There’s communities that people talk and give ideas. They even tell you, you know, they throw out ideas on how to pre make food, you know, you take one day and cook for the week.

I’m not one of those, but, you know, it’s amazing the ideas that they come up with to help you get through the day, let alone the week. Yes.

Scott DeLuzio: Right. And like you said before, a lot of the stuff that is offered, uh, that, or that is available is free and you just need to know where to find it. And,

Elisa Glass: That’s the key.

Scott DeLuzio: you know, the, the VA doesn’t, like you said, it doesn’t just, Show up at your door and say, here’s all the stuff that, that we have available to you. Um, yeah, you might have to do a little digging and a little, you know, a little research, but,

Elisa Glass: And be proactive. Make that phone call. Keep making the phone call. I left so many messages to one social worker. It was hysterical that when she finally got to me, she goes, I need to tell you, you’re the only one that had a voicemail. People said they [00:32:00] couldn’t get through.

Scott DeLuzio: Oh,

Elisa Glass: I kept leaving voicemails.

I’m like, you’re going to call me back and we’re going to make this work. And I, I had to be persistent. I, I, you know, and proactive and, and I didn’t know about this. I didn’t know about the world of caregiving. I didn’t know about the resources in the VA. So I really felt like a duck out of water and I had to do a lot of learning.

And, and also strangely enough, Build confidence to be proactive and to go get these things. And, but simultaneously, I must share with you that my respect for the military, for veterans just grew exponentially. I tell you, and then at the same time, my respect for caregivers and what we are lacking and I’m going, we got to go out there because our vets need us.

They need us, but they also need [00:33:00] us to be whole, not to, not to do to yourself what happened to me, which was to crash and in the hospital. So that’s how it became my passion. Okay. And what I do today.

Scott DeLuzio: so, uh, can you tell us a little bit more about, um, in addition to like the, the advocacy work and you mentioned you. You do all of that type of stuff. Um, you also, uh, wrote a book, uh, with, uh, affirmations for caregivers, uh, which you talked about a little bit about that as well, uh, about the affirmations, um, yeah, tell us a little bit more about, you know, kind of everything that you do, but also the book as well.


Elisa Glass: I Matter was what came out of my work. And, and it’s, it is an affirmation journal and coloring book, but it, in the back, what makes mine’s different is that it also teaches you how to make your own affirmations. And it gives you A lot of resources as a caregiving person where you can call in what you can do.

And these, this is work that I did and I [00:34:00] put together because it’s just not out there. But today I’m the CEO and president of Myositis and Allied Diseases. And what is that? Well, I am really Advocating for the underrepresented who have chronic autoimmune diseases, and that also considered very rare. So I’ve become a voice for the voiceless, so to speak.

I advocate for medications and drug therapy for clinical studies, and that opened up the door for me to work with many pharmaceutical companies, and it’s been interesting. I’m kind of like a favorite speaker, which is exciting. But, um, right now I’ve been doing a lot of work with Johnson Johnson who, it’s really interesting how they’re doing this stuff, but I have worked with Alexion, I have worked with Octofama, and what we are trying to do is to make it known what is going on.

I happen to be one of their rarest stories because I [00:35:00] am a caregiver. that broke down, and here I am ill, so I still carry both. You will not hear me talk about my disease without talking about caregiving and talking about veterans. To me, they go hand in hand and it needs to be discussed. So that’s what I do a lot of now.

And during this, I’ve compiled a lot of information. Um, this particular book, it’s really for the caregivers, whether they’re for vets or any other caregiving situation, it can even be children and how to kind of take care of yourself, to question yourself on a daily basis, to kind of judge where you’re at emotionally on that day.

And then to get to the point where, you know, you can empower yourself. To write your own affirmations that really resonates with you. And there were two that resonated with me when I was going through everything. One was, I got this. I got this. I kept repeating it. And the other was, I matter. I exist. And the Elizabeth Dole [00:36:00] Foundation really helped me to bring that attention is that we are here.

We may not be seen. We’re behind the scenes, but we exist. And I. and working towards people understanding who we are, what we go through, and get even more assistance for caregiving. And that’s what brought about, okay, the I matter, because that was my affirmation. And you know, this person, of course, that was my moment of where I can say I felt free.

within the confines of a chronic autoimmune disease and being a caregiver. You know, it’s just, it was so unfreeing. That’s why you have the person, their hands out. And there is coloring pages, which I love to color. I put loud colors. So that is vibrant for me. It, it helps a visual for me to kind of take me there.

And as I mentioned, there’s parts in the back for notes and there’s resources. But during this time to really becoming involved with veterans, [00:37:00] I went into, uh, Uh, business degree for you in UConn and I got a business degree for veteran services and I love it. and was more motivated. And I work now with small veteran businesses to succeed.

And that’s how I got on the board of the Massachusetts Veteran Chambers of Commerce. So everything started to connect. And I’m, I’m grateful because a lot of the work is done on Zoom. So I’m not putting so much pressure on the body and taxing out the body. My brain is working fine. So it’s my brain, you know, I’m really great at grants.

And so there’s a lot of things that I got involved with that way. And then at one point, uh, the veterans business, you know, it was a business week and I wound up writing the jingle that is being used in Massachusetts and probably other places. And I love it. You know, I got to sing it, got to write it, and it was so much fun and it was used.

It’s still [00:38:00] on the Massachusetts website, obviously. And um, Yeah. I also, there was a woman, Lisa DeCharm, who wrote a song and she wrote a lot about every service and we got together and what I did was refine it, redefine it, and we actually made a song out of it. So, um, and it, it talks about every branch, not just one branch, because Each and every one of them needs to be honored, needs to be respected, needs to be supported, you know, and for me, needs to be loved, you know, I’m a love of love, let’s throw love out there.

So, so a lot of that is what happened and that’s how this book came about. And there’s two others in the back that I actually got some of my short stories and a poem that I wrote. for my husband that I was really surprised when I read the poem because they said it was so good. They had me go down and I had a reading in White Plains, New York, which was exciting for me.

And when I read [00:39:00] the poem, some of these people just broke out in tears. And for a moment, I couldn’t understand, but I realized that they identified how much they love their spouse. You know, and, and through all the adverse, adversity and the craziness and all this stuff and the loss, that love is still there, you know, and I, it’s, that’s what’s one of the things that they also published for me and that’s Homefront, I don’t know if you can.

On the Homefront. So I got some of my work published through two of their, their platforms, which is exciting. And I have to tell you, all of this came after. Okay. So I wound up with this whole beautiful new life after almost dying. Okay. And I, I like what it is. I love fighting for my veterans. I love fighting for caregivers.

I love being an advocate. I love getting the word out there. And, [00:40:00] and, and like yourself, meeting someone like you, it’s like I’m meeting more and more people who are just wanting to help and get out there. And that makes me so excited. You know,

Scott DeLuzio: Absolutely. I, and I have that same type of feeling with this show. I mean, this episode is, uh, nearing the 400th episode that

Elisa Glass: look at that.

Scott DeLuzio: I, I’ve met, I’ve met hundreds, literally hundreds of people doing this show, uh, that I I’ve talked to, you know, a lot of times I didn’t know that person before we started talking on, on the show.

Uh, but, uh, By the end of the show, uh, by the end of the interview, I feel like I’ve known this person for so long because they shared so much of their background and their personal history and all that kind of stuff with me. And it’s actually kind of cool, uh, because you, you start to develop those relationships and, you know, somewhere down the line, you start helping each other out with, with something.

It may not be something that’s, you know, immediate need right now, but you know, [00:41:00] Six months on the line a year later, Hey, yeah. Remember me, you know, can we work together on this? Yeah. And that’s happened plenty of times. Um, so, so that, that community building is, is important in like what you’re, you’re talking about and what you’re doing, um, you’re, you’re meeting people.

You’re, you’re getting to know about them. Um, and, and you’re, you’re helping people out. Um, And all while not neglecting the, the caregiving, uh, side of things either, you know, and so I, and I, I mentioned that because there’s going to be people out there who are like, but I’m just so busy. I have to do all this stuff.

I’m always constantly doing that time management thing that you mentioned before, how much time can you. Can you free up by not binge watching a show? It makes it so easy now that it’s on Netflix or Hulu or whatever.

Elisa Glass: Prime, you know,

Scott DeLuzio: so easy. Yeah, all of that. It’s so [00:42:00] easy to just binge watch these things, right?

Um, but that, that eats up a huge chunk of your day. And when you’re like, where did the day go? And I, I, I thought I had more time. Well, you did have more time, but you, you blew it on doing something else.

Elisa Glass: Without knowing, because you’re distracting yourself.

Scott DeLuzio: you’re, you are distracted. Yeah, it’s very, very distracting. And then, um, you know, I, I’ve had days like that too, where, where, I’ve looked around.

I’m like, where did the day go? Like, I felt like I just woke up and now it’s almost time for bed. And the day just flies by. And, and that, that’s,

Elisa Glass: Which reminds me, another thing to use is a calendar. I am, I have calendars with me. I walk with it and I try to fit everything in because I don’t want to be late anywhere. Um, I’m a caregiver, not a veteran, but I will tell you, I’ve learned, you know, if you’re, you know, if you’re 15 minutes early, you’re 10 minutes late.

This is, you tell me this all the time and I’m like, Oh my gosh, you know, so I really [00:43:00] try to, you know, and manage all of my doctor visits and I manage it. And how do I manage it? Time management, the calendar and, and prioritizing. Sometimes you have to say, wait a minute, I got to get out this house. Okay. I mean, you know, it’s sometimes I got to get out the house.

Okay. I need to decompress. I need to do something of, of fun and maybe even frivolous, you know, in order to come back and be ready and re energize and keep going. And I’ve, listen, I’ve heard it all that they don’t have time. And, and one of the things that I also correlated with not having time is that we spend time in being sad.

We stay in the morning. If we keep feeding and looking at them and or get into their. psychosis at that time, or, or, you know, like I said, don’t, don’t even bother if they’re going to argue, whatever. Sometimes it’s best not to even [00:44:00] engage, right? It’s to disengage. And, you know, you look at that and you realize, I am also wasting time sitting here, feeling sorry for this person.

feeling sorry for myself or being angry as some service that is not being given. And you have to look at that too. And I recognize that. And I’m definitely talking about myself here that I was spending a lot of time grieving. Not only was I grieving him, I was grieving my own life, you know, and thinking, oh gosh, you know, I worked so all these years and thinking, oh, I got a few years left and then I can retire young and do X, Y, and Z.

Didn’t happen. It just didn’t happen. So there is that grief process that I spent a lot of hours just sitting there, just staying in my head. And I’m going, that’s not, it’s counterproductive. It was not productive for me. And needless to say, started all of these. Affirmations, [00:45:00] you know, staying positive and doing what I need to do.


Scott DeLuzio: Yeah, absolutely. And, and getting that mindset right is, I think just a huge part of it.

Elisa Glass: Oh yeah.

Scott DeLuzio: in addition to the time management, but that’s, that’s also part of the mindset, I think, um, because if, if you are constantly looking for that distraction, time management’s going to be nearly impossible. Um, and you’re always going to feel like you’re just barely keeping your head over, over, uh, above the water.

Uh, you’re, you’re, you’re going to feel like you’re, you’re just swamped and you can’t move. Make any headway or any progress with anything. And if anything, you may feel like you’re even going backwards and you’re not going in the direction that you want. So yeah, get,

Elisa Glass: It’s really amazing. And that’s the, you know, the mind is amazing and it can just play all these tricks on you. And that’s when I also realized too, I needed some therapy. And I, I went to the VA, I got some great [00:46:00] therapists in there. Then I also had a therapist on the outside that was assigned to me because of my, my, uh, state, my body’s state.

And, um, That was dealing with what they were calling at that time, um, medical PTSD for me. So I, I continued the therapy. I, and I became a little bit more talkative because I didn’t talk much. I didn’t tell people everything I was doing and how I may have been overwhelmed. And I wasn’t asking. I, I didn’t even ask, you know, and I have.

Siblings and I have adult children and I didn’t even ask you think you can come over this weekend and you know, do this because I felt guilty to want to do that and I felt it was my responsibility and then I felt that if I didn’t do it or I couldn’t do it, that it was a failure on my part and I really had to look at all of that and it’s not, it’s okay to ask for help.

It’s okay to do these things, you know, and yeah. I had to process all of [00:47:00] that and I worked really hard on that. And still to this day, you know, I call myself eight years old because at 2016 I almost died. But um, I am still working on it and I listen to so many, like yourself, you know, having words of wisdom, you know, and you listen and learn and try to create that space for yourself.

You know, you must go on. You don’t, don’t let your identity get swallowed up and disappeared, you know.

Scott DeLuzio: That’s right. And, and I guess also realizing that you’re not alone in any of this, that there are other people out there who have experienced similar things, uh, that. They have been there, done that. They’ve been in the trenches. They know what you’re going through. Um, so ask for help and, and take the advice when, when you need it.

You know, and so, exactly, um, is there any place that, that people can go to kind of get in touch with you if they have questions or they want to find out more about what it is that you do and the advocacy work [00:48:00] that you do and that type of stuff?

Elisa Glass: Absolutely. Um, and I, I didn’t mention it, but in case they are interested, it is on Amazon. Okay. I, um, I’ve been surprised I’ve been contacted by social workers who have been buying in bulk to kind of distribute among their clients. So that’s been kind of exciting for me as well. I do have a, um, by the way, myositis and allied diseases, uh, at gmail.

com. That is an email. Okay. Myositis. Allied Diseases at gmail. com. And there is a phone number 603 290 3218. I do get back to everyone in time. There is no question that I find silly. That’s no such thing as that. Um, and if there’s any way that someone may even want to share information with me, please feel free to send it.

I [00:49:00] Listen, I, I’m all for it. The more we can grow, the better it is to get that word out there.

Scott DeLuzio: exactly. And, and I’ll have, uh, this information, the, the show notes as well, so folks can, uh, reach out to you and, and find out. More about what you do and, and get that, that information. Uh, also have links to your books in the show notes as well.

Elisa Glass: Thank you.

Scott DeLuzio: that way folks can, can grab a copy of the book or several copies if they, you know, in, in the case of the social workers, like you mentioned, that, that might want to distribute it out to folks, um, that, that could be a thing too, but, um, you know, I think the message that you, you mentioned earlier, um, uh, you know, saying, repeating to yourself, I got this.

Um, I think. I think that is a thing that, uh, if you keep telling yourself, eventually you’re going to start believing it and eventually you’re going to have it, you know, so that, that to me is a super powerful, uh, thing

Elisa Glass: I, I think

Scott DeLuzio: telling people exactly. Um,

Elisa Glass: so.[00:50:00]

Scott DeLuzio: before, before we wrap up this episode, uh, I want to end it with a little bit of humor.

Um, I know sometimes the subjects that we cover on the episodes are, you know, a little, little heavier for some folks. And, uh, I always like to. You know, it’s almost like having a dessert at the end of a meal, you know, it

Elisa Glass: I love humor.

Scott DeLuzio: Yeah, so hopefully the joke that I tell here is a good one and you can laugh at the joke, but if not, you can always laugh at me and I’m okay with that.

As long as, as long as you’re laughing, I don’t care. Um, you could, you could definitely laugh at me and that’s fine. So anyways, um, so a new captain becomes a leader of a company of soldiers and as he goes out learning everything on how they did, uh, do things, he finds that there’s two soldiers who are guarding a bench.

And he asks the soldiers why they’re guarding the bench. And they say that the previous commander, uh, ordered them to do it. So he called the previous commander up and, uh, he’s at, he’s [00:51:00] asking why he did that. What, and the, the major, the, the guy who we called said it’s because, uh, the previous commander ordered it.

So he calls that commander and that guy’s now a Lieutenant Colonel asking, uh, you know, why, why did he order that? And he gets the same answer. That it was ordered by the previous commander. So he goes through this whole song and dance a couple more times, uh, before he gets hold of a retired four star general.

And he calls up the general and he asks, why did you order the men to guard this bench that all the commander’s since have maintained this tradition of, of having people stand guard at this bench? And the old retired generals goes, wait, is that paint still wet?

Elisa Glass: Sad but true.

Scott DeLuzio: You know, it’s the one thing I’ve noticed in, in business and in when I was in the military is there’s, there’s been this mentality [00:52:00] with people. It’s, this is the way things have always been done. And so that that’s the reason and the rationale for why is it that you’re doing this thing? Well, it’s because that’s the way it’s always been done and is a good example

Elisa Glass: I, I love it.

Scott DeLuzio: it’s the way it’s always been done.

So that’s how we’re going to do it. Doesn’t mean it’s right.

Elisa Glass: call ourselves an agent of change.

Scott DeLuzio: There you go. Yeah. So,

Elisa Glass: it.

Scott DeLuzio: I, I just hope that that captain who took over that company has a Dismiss those soldiers and let

Elisa Glass: I hope so!

Scott DeLuzio: guard that bench anymore. Holy crap. Uh, anyways, thank you again for taking the time to come on and sharing your story, sharing your husband’s story and, um, and the work that you do to help out caregivers and others who are in a similar situation, uh, to where, where you are, um, because there is help out there and there’s hope for those who, uh, maybe are feeling like they’re all alone and that they need help.

They [00:53:00] can’t get through this on their own, so thank you.

Elisa Glass: Thank you for having me, I appreciate it.

Scott DeLuzio: Thanks for listening to the Drive On Podcast. If you want to support the show, please check out Scott’s book, Surviving Son on Amazon. All of the sales from that book go directly back into this podcast and work to help veterans in need. You can also follow the Drive On Podcast on Instagram, Facebook, Twitter, LinkedIn, YouTube, and wherever you listen to podcasts.

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