Scott Webb (Host): Welcome to Wise and Well, presented by Community Memorial Healthcare. I'm Scott Webb. And today, we're going to learn about the Caregiver Navigator Program at Community from Janice Aharon-Ezer, the caregiver navigator, and Lisa and Dwayne, both of whom are caregivers for family members and members of the caregiver support group at Community. Janice, I'm going to start with you. Just want to have you tell us about the Caregiver Navigator program and the Caregiver support group at CMH.

Janice Aharon-Ezer: I would love to tell you about this fantastic program. We started the Caregiver Navigator program deep during COVID. It was started August 2020 by the good graces of Ventura County Community Foundation, a grant that they gave us and two other hospitals. We're the only hospital that's continuing the program.

The program is very unique in that, because it's grant funded, there's no cost to families, and we never have to ask them about insurance. So right there, that's a wonderful thing for caregivers. And I deal with, as a caregiver navigator, family caregivers of all sorts, taking care of loved ones of all different ages that have medical, psychological, substance abuse, developmental disabilities, or dementia. So, our program is very broad. Usually, when caregiving comes up, people think of elderly people, and that certainly is true, but there's a whole swath of people that are taking care of loved ones in very difficult situations.

The Caregiver Support Group I started a little bit over three years ago. It is different from the Caregiver Navigator program in that it is really a community treasure. It's open to any family or friend caregiver anywhere in our county that's taking care of loved ones, whereas the program itself is only for family caregivers that are caring for patients that are patients of one of our family clinics.

Host: Okay. Yeah. And that's a great foundation to start the conversation today. I'm sure, Janice, like many people probably just don't even realize they are caregivers, right, until they are overwhelmed. Many people just don't realize that that's become their role. So, what are some of the common challenges you see caregivers facing? And how does the program and caregiver support group help?

Janice Aharon-Ezer: Interesting what you're saying. Rosalynn Carter started the Caregiving Institute decades ago, and we still don't know really what caregivers are. I took care of my mother who had Alzheimer's in another state, moved her here, went through all kinds of things, placed her. I had no idea I was a caregiver. So, it's really true, Scott. People don't necessarily think of themselves as caregivers or realize the stress they're under as a caregiver. That's true.

Host: Yeah, that's great to hear, Janice. You have to be of a certain age to know who Rosalind Carter was. And great that you offer that support and help to folks. And Dwayne, I want to bring you in because I know you and Lisa have very different caregiving experiences. You're both members of the caregiver support group, of course. Maybe you can tell us what's happening in your life and when you first connected with the group, and maybe what made you decide to reach out?

Dwayne McCulloch: I take care of my wife, Susan, and I have been for three and a half years. She was diagnosed with Alzheimer's dementia roughly three years ago. And at that time, I knew I needed a support group. And one of the things I wanted was that I wanted it weekly. And so, I started researching, and I finally found Janice's group through a flyer. And I called her and found out where they meet and what I have to do to get into the group.

And so, roughly three years ago, I joined the group, and it's been very supportive. And it's helped me a lot. One of the reasons I wanted to be in a group is that I wanted to have future knowledge of the disease and what to expect. And I knew that there would probably be people in there further along the journey than I was on. And it helped to deal with the constant change of my wife's reality, which changed mine, you know, on a daily basis. And so, it was very helpful with that knowledge, and plus the group is very compassionate and helpful. You know, we all tend to vent a little bit, but I think we need to do that. We're human. Anyway, the group is very helpful, and I'm glad that I was able to get into it, and I will continue as long as possible.

Host: Yeah, it's so great. A few takeaways there. Obviously, people still look at flyers, so that's amazing. I love hearing that. And as you say, we're all humans, right? We're all human beings. We're all kind of going through this together but separately. And great to have your perspective on things. And Lisa, I want to get a sense from you. Like, how did you first get connected and decide to reach out?

Lisa Hildebrand: My caregiving started with my parents. I was noticing that they were in need for entering assisted living coming up. And so, I did that part all on my own. I did it from what I saw them do with my grandma, and I kind of went through that by myself. I really didn't have much support. I had a sister, but she wasn't really a support in that, and I quickly realized why after my parents passed, because then I went straight into caregiving her when she had a bipolar manic episode.

And right after that was when I found the caregiver support group, because I started caregiving her without kind of almost realizing it. So when I had to put her into assisted living at 55 years old, a friend of mine kind of recognized that, "Hey, now you're caregiving your sister," and she invited me into this group. And so, my story is different than some of the people in the group. But since then we've had people in my same situation come into the group. So, it doesn't have to be dementia, it doesn't have to be Alzheimer's. There's lots of different ways people enter our group. So, the stories are really varied and there's different levels of caregiving. You know, I don't live with my sister. It's not a everyday thing that I'm actively involved, but she occupies my brain all the time.

So, my caregiving is through thinking about her all the time, figuring out how to get her support and maintain that support, and it ebbs and flows. I think for all of us, our caregiving ebbs and flows as far as the intensity. And so, it's great to have that because the people in your life are not there all the time hearing all the ups and downs. But the people in the group know your story and understand that and, you know, are there for you through all of that. And so, it's been a phenomenal support for me.

Scott Webb: Yeah, it sounds like it. Like as you say, ups and downs, ebbs and flows. Maybe you could just give us a sense, Lisa, like why this gathering with other caregivers is such needed support for so many?

Lisa Hildebrand: Well, what's been really great for me is the healing I've had from dealing with my parents by myself. Through listening to Dwayne and others with Alzheimer's and dementia, I've learned so much of what I went through in retrospect, so I've had a lot of healing from that. But also, similarities, no matter what we're going through with the people that we're taking care of, it really doesn't matter what the person you're caregiving for is going through. The similarities between the caregivers are the same. So, the same things that we're dealing withwhether it be guilt or exhaustion or frustration or hopelessness or joy or whatever the things are all the same. So, we really understand and can still give that compassion or empathy or just that place to vent, like Dwayne said.

So, I think that's really what we get from each other, is just a non-judgmental place to just be. But also, I mean, Janice is just such a treasure for all of us, because she's there and she knows all of our stories and can kind of, you know, give us that empathy or also kind of push us to take care of ourselves or go on that vacation or whatever it is to not give into that guilt that we have. So, having someone there to guide us too is invaluable.

Host: Yeah. And Dwayne, you mentioned earlier it's a place where you can vent, because we're humans and sometimes you need to do that. Something that Lisa said there caught my attention—well, many things—but one in particular about taking care of yourself. And I just wanted to get a sense from you, especially working with these other caregivers and the support that you get from them, is that something you need to be reminded of sometime, like, "It's okay, Dwayne, you can take care of yourself occasionally"?

Dwayne McCulloch: Well, Janice has really pushed the self-care. I started up golf again. I hadn't played in 30 years, but I've been fortunate enough that I have people around me that are more than willing to help. So, I have a couple that watch my wife when I get to play golf once a week. Another couple that watches her when I go to the caregiving group, and we have dinner afterwards in both incidents.

And I know, as with a dementia individual, your world for me collapses on you. It becomes smaller and smaller, and it's very important to constantly reach out to friends and family. And I have a lot of ladies at church that help me out. So, I do get time for myself, even though as the journey goes, it's less and less. But it's very important to definitely have time to yourself and do, you know, various projects that interest you.

Host: Right. And as a fellow occasional golfer, I understand completely sometimes you just need to get out there and swing those clubs, and it's good mentally, physically, and otherwise. Janice, wanted to bring you back. You've been referenced here as being a great support and encouraging these other caregivers.

Just want to get a sense in general, like the services, resources, support that's available through the Navigator Program, and how you really tailor it to each caregiver's unique situation.

Janice Aharon-Ezer: Well, this program is very unique in itself because I actually never interface with patients. They're not my clients. My clients are the family caregivers. It's about them. And this program is actually behavioral health-based, because, sure, I do help with resources. I help knock down barriers that people are having sometimes in the healthcare system, unfortunately.

But really, it's about what is this experience like for you and how can you go through this experience and have the integrity that you want to have, have your anxiety and depression low, increase your resiliency, and how can you feel good and maybe even develop some skills or capacities. We were just talking about that in group yesterday, that you may not have had if you weren't a caregiver. So, how to kind of turn the whole situation around.

So, it's about family engagement, because sometimes there's only one person in a big family that's taking care of mom and dad or that sibling in really difficult situations. So, there can be a lot of feelings attached, resentment, anger. Why is this happening to me? Why am I the person doing it? Or the person I'm taking care of, mom, dad, sister, brother, they were abusive to me. They weren't there when I was there, and now I'm there for them. How do I make this work for them and me? How do I do the right thing for them and for myself? So, a lot of it is behavioral based.

There's an hour assessment that I do when somebody comes into the program, and that's what really helps target what is it that this person needs. It's finding out from them what do they need. Is it all about the emotional piece? Is it resources that they're not able to get? There's tremendous barriers for people that need to place their loved ones.

Lisa, her sister is placed. There's a lot of people, we think of placement as being a bad thing. But when you have to have cameras on somebody because they're escaping, you have a son that has Willi-Prader syndrome who is very violent, you know, people that cannot be safely managed in the home, it's very, very expensive. What do you do? You don't have the right insurance. There's really no insurance that covers it. Those are huge issues. What do you do if you have a daughter who's over the age of 18, and she's got a substance abuse issue and she's legally involved and she will not stop, she won't take any help? What do parents do about that?

This program cannot create a magic wand that isn't there because we have some things in our society that make it very difficult to deal with these issues. But it really helps the caregiver navigate these difficulties and maintain a sense of themself and power within themselves to deal with the situation.

Host: Right. Dwayne, I wanted to ask you, like, what are some of the biggest misconceptions maybe that people have about asking for help as a caregiver? And what would you say to someone who is struggling on their own, as maybe you do on some days, you know?

Dwayne McCulloch: Well, I don't know if it's misconception. I think it's more of out of sight, out of mind. Generally, people will not offer help. You as an individual have to reach out and ask. And when I've done that, you know, people are more than willing to help. So, it's very crucial that you develop a support group around you, whether it's, you know, friends, family, church, whatever, the person is involved in, and not be afraid to not ask.

You just have to ask, and sometimes you're going to be rejected. But most of the time, people are compassionate and they understand, and they do want to help. But my experience is that most people don't offer. You have to ask.

Host: Yeah, that's interesting. And I'm sure, Lisa, maybe that's one of the biggest barriers like Janice was mentioning, is just the fact that you have to ask maybe sometimes. And people are going to say yes, most folks are going to say yes, but you have to ask. But just in general, any other misconceptions that stand out to you?

Lisa Hildebrand: I don't know if it's a misconception, but I think people get stuck in that you are the only person who can care for your person, that you have to be there 24/7. And that it is okay to step away, that it is okay figuring out a way to find out how to leave them. Like Dwayne has done, you know, how to figure out how to get to golf, how to do that. Like, it's crucial. You know, it's that old thing about putting the oxygen mask on yourself. It feels impossible. But if you don't do that, it will come imploding in on top of you. And so, you know, getting to something like this caregiver group is part of that.

And so even stepping away for, you know, the two hours that it would take to get to something like this feels impossible when you're a caregiver, and so many times the people that you're taking care of are going to really make you feel guilty for doing something like this. But you really have to advocate for yourself as a caregiver. And ironically, that's the best way you can care for them as well. So, it's just imperative that you do that, and that can feel impossible when you're in the middle of it. So, I think that's one of the biggest hurdles in early caregiving to get over.

Host: I'm sure. And, you know, I know we could probably stay on here for far longer, but for today, Lisa, I'll give you a chance here as we wrap up. What do you hope listeners take away from this conversation?

Lisa Hildebrand: I mean it could just be my algorithm, but I don't think so. I think this is becoming a bigger and bigger conversation and a bigger need and is not going to be going away. I think it's happening more and more. And more and more people are going to be caregivers and, honestly, younger and younger people are going to be becoming caregivers.

I'm the director of a school, and more and more of my younger teachers are raising children and caregiving people in their family. And younger and younger people are needing caregivers. I mean, I now know a few people who have, you know, people in their 50s and younger in their family who have Alzheimer's. So. It's something we have to deal with. And it's something we need to get better at, is supporting people who are caregiving because people are living full lives and having to caregive at the same time. , It's something that we really need to figure out how to support people in doing. So, I think the more you understand about it, the more you can support people in it.

Host: Right. Yeah, and we certainly hope podcasts like this help with that understanding. And Dwayne, give you an opportunity here. What message would you like to get across to folks?

Dwayne McCulloch: Well, definitely, find a support group. You gain knowledge, people listen to you. You can, you know, vent and tell your story and people listen with compassion. And as my dad would say, it's like getting a breath of fresh air. And I look forward to the group all the time. But two, don't be afraid to ask for help from your friends and family and anybody else that is in your sphere of influence. But you definitely need the support of a group.

Host: Yeah. Yeah, that's well said. And Janice, give you last word, so to speak here. How can caregivers in the community get connected with the Caregiver Navigator program and the support group?

Janice Aharon-Ezer: Yeah, just a quick point. So, we've partnered with Channel Islands University, and they've done two data analysis studies on the effects of the program. We just got the results about two weeks ago and, again, consistently reducing levels of anxiety, depression, caregiver burnout, and increasing resiliency in caregivers.

So, it's a really great program. Number 805-948-5803 will get people to the caregiver navigator, which is me. And I get calls all the time. That phone number will get you to me, and I can talk to you about the group and tell you when it is, and we can see if you qualify for the program.

Host: Right. Well, that's great. It's great to have you all here. I appreciate, Lisa and Dwayne, you guys, you know, sharing your own personal stories, your family stories. It's a lot to think about for folks and myself, and I just appreciate everyone being here. Thank you so much.

Lisa Hildebrand: Thank you.

Janice Aharon-Ezer: Thank you.

Dwayne McCulloch: Thank you, Scott.

Host: And once again, to reach Janice to learn more about the program, call 805-948-5803. That's 805-948-5803. And if you found this podcast helpful, please share it on your social channels and check out the entire podcast library for additional topics of interest. I'm Scott Webb. Thanks for listening. This is Wise and Well, presented by Community Memorial Healthcare.