The Unexpected Joys of Being a Caregiver

and my guests as you're weekly walking buddies. We'll hear stories from caregivers and gain tips and insights from health experts and advocates who know how important it is to take care of yourself and manage joint pain due to arthritis that often accompanies being a caregiver. Will discover community, ourselves and maybe even alleviate some joint pain due to arthritis in the process as we walk together and connect to the best parts of being a caregiver. Welcome back

to care Walks. I'm so glad you're here today. How are you feeling? You know it's okay if the answer is I'm okay or I'm hanging in there, because it's important to acknowledge and recognize our feelings, especially if we're not caregiving is twenty four seven, and it's okay to say, you know what, I'm struggling today. That is the first step to asking for help and finding time to take care of yourself. I'm also hoping today's show can be an uplifting self care moment for you too. But first,

just a quick reminder. Right now, you're listening to the full version of this episode, But if you don't have time for a full walk today, that's okay. Just go check out our bridged version of the same episode. It's like the cliff Notes for podcasts. All right, I'm really looking forward to today's episode. We're talking about the joys of being a caregiver. We talk so much about how hard and difficult caregiving can be, which is true, but

caregiving can bring a lot of bright moments too. So I know that from my own experience, being a caregiver gave me some really valuable quality time with my father. We had a lot of deep conversations, and it became a time where we really got to work on and improve our relationship. We got to say things to each other that we've never said before, and we had some major breakthroughs. I cherished that time today I'll be joined

by caregiver Rob Phobian. Rob is the chief community Engagement officer for the Austin Groups for the Elderly and Central Texas, but he's also been a primary caregiver for the last twenty four years for his husband, who suffers from early onset dementia. While finding how to strike a balance between the many aspects of his busy schedule, Rob has found boundless joy in the relationship that caregiving has forged and understands the importance of fine support and joy throughout his journey.

Before we get to my conversation with Rob, let's get walking. Let's bring our full attention to this walk. Find things to anchor onto in this moment to help you stay present, whether it's the feeling of the ground beneath you or focusing on the sound of my voice. Take a deep breath in and out. We can always return to our breath to anchor ourselves again. Take another deep inhale and release it out of your mouth. Don't be afraid to

release a sigh, a good sigh along with it. Recognize that the stresses from the day or from this week are only obstacles. They do not define your abilities. They do not define your happiness. Take this opportunity to loosen your shoulders if they're tints, unclench your jaw, and take another cleansing breath in and out. Now start to find a natural and comfortable walking pace to settle into. And let's explore how we can find renew joy and love in our role as caregivers every day with my guests,

Rob Phobian. Rob, thank you so much for joining us today. Holly, thank you so much. I appreciate this opportunity. Yes, oh so, I love to get to know your story a little bit more. Can you tell us about how you first became a caregiver? Most certainly, first, I started caring for my husband. He has been HIV positive for more than thirty years. So he takes thirty six pills every day,

and you multiply that time thirty years. You know, everything that goes in your mouth eventually ends up in your brain. And so the doctors told us very early on that if he lived long enough, that he would probably develop some type of cognitive issue because of all the medication. Luckily, he is doing terrific health wise. His viral load is undetectable, his T cell count is through the roof, which is a blessing because the meds are doing exactly what they're

supposed to. They're keeping him alive. Unfortunately, because of all of that medication, it's starting to affect his cognitive Yes, the cognitive it's said, it's a give and take, right. How did you approach taking on the challenges of his health as it declined and did you is you get to talk about together or strategize about it. We certainly did and that was one of the blessings that we

had is knowing that we had time to plan. And for many families who are dealing with memory loss cognitive issues, they don't have that time or they don't take the time.

Many times they don't you know, they start seeing something happening with mom, dad, husband, wife, and they think, oh, that's just part of normal aging, or you know, that's just them being silly, but in reality, they are slowly starting to have cognitive issues, and so addressing it early on is so important because we were able to talk about the what ifs and what would he like And the same thing has happened with my parents. My father had a brain bleed stroke three years ago and so

I'm also his caregiver along with helping my mother. They live independently, but in order for that to happen, I helped take care of them there in their to late eighties, and so in addition to the normal aspects of aging, we have this on top of it as well. And so that's one thing we did is we sat down and had those very honest conversations about what if and what comes next and what do you want because the

time to have that is early into these situations. It's not when you're at the hospital in an emergency having those conversations. You need to have them early on. And you know a lot of people don't like talking about those things, but it's so important. It's not the if it's going to happen, it's the win it's going to happen, and you really need to have those conversations early. That's right.

As a caregiver for both your parents and your husband, how how do you approach caregiving differently for each Well, you know, in one case it is my spouse, my partner, my life partner who I live with seven and so that's a different dynamic than my parents. As we know, being care evers taking care of our parents, we kind of become the parent in many ways. It's the role reversal, and you have to kind of tread lightly in many ways.

You know what is best for them, you know in your heart what needs to happen, but at the same time, they still view you as their child, and so it's a complete role reversal and you have to come at it in a in a different way. The way that I would talk with my husband about things would be different, the way that I would talk to my father about things. Seeing that you dedicate so much of your time being there for your loved ones, what would you say caregiving

means to you? It is such a blessing, It really is. For example, I have learned so much about my family and my parents getting to spend this much time with them. I just found out that my mother was a roller SKay being car hop when she was a senior in high school. I never knew that, Wow, that's compressive, And that my dad would come in his car every night and you know, park in her area just to get to spend some time with her before they ever started dating,

because he thought she was so beautiful. And so I'm learning all these great stories about the family, and it's time that I probably would not have gotten to spend with my family because honestly, as a career professional, like most people, I wouldn't probably have taken as much time as I have to spend with my family. That is one of the blessings of caregiving, hearing you discover these

things about your parents that you did not know. You know, you mentioned that not everyone is meant to be a caregiver. What are some of the challenges that you've had to overcome in your relationship while being a caregiver to your partner? Well,

obviously trying not to take charge of everything. You know, it's very hard when you care so much about someone and you want everything to be just so perfect for them, and you become overprotective and you forget that this is an individual who has their own purpose in life and their own desires, their own feelings, and you don't want

to take any of that away. You want to be the hand to help them when they need it, but you also want to be the pat on the back, the encouragement just to support them in their journey as well, because when someone has a cognitive issue, it is incredibly confusing for them. Uh, I heard it best explained of someone that I work with talking about dementia, saying that people who live with dementia know something's wrong, they don't know what it is or how to fix it, and

that is living in twenty four hours of confusion. And I understand that that. You know, when he lashes out at me, it's not because he is attacking me, it's because he doesn't know how else to express, because he doesn't know what's going on, and so he's gone to fight or flight mode. Oh my goodness, there's just such an a level of empathy and an ability to try to put yourself in someone else's shoes that sometimes it's

very difficult to do that. My dad had dementia for a long time at the end of his journey with Parkinsons, and I was never really able too. I don't think properly empathize with him about the dimension. So what you just the way you just defined what that is is super helpful, I think to a lot of people. And trust me, this is not something that just came to me overnight. As a caregiver, you grow into your role.

For many of us, caregiving sneaks up on us, and you know, we go from being helpful to being the one that's relied on seven. You know, you seem to have such clarity about the realities of your situation. I mean you have to, obviously, And I know you said it didn't all come to you overnight and it was a journey. But what have you what have you been able to learn about yourself since becoming a caregiver for

your husband and parents. I don't know if it said I've learned about myself, but what I have learned to do is exactly what you said. You know, realize that most of it is not in my control, and that's okay, And so you take a deep breath and you make good choices and you keep going. I'm the kind of person that makes lots of lists and has multiple plates

spinning simultaneously, and always got lots of projects going. And I've had to learn when I'm caregiving with my parents with my husband in that situation, put all that aside. I am there with them. I'm not thinking about the project tomorrow. I'm not thinking about what I need to do next week. I need to think about what they

need and the time that I'm spending with them. And that's been difficult for me because it's not my personality to do that, But I think that has helped me be a better person because it is giving me a new skill set that I'm very proud of. We'll be right back with more from Rob Phobian, and now back to my conversation with Rob Phobian. Tell me about the work you do with the Austin Groups for the Elderly and Central Texas and how that organization works with those

who are aging and their caregivers. Yeah, our acronym is AGE, and so Age of Central Texas is a regional nonprofit organization that serves older adults and particul kuler those who are experiencing a cognitive issue in their life, to help them stay connected in the community, continue to socialize, continue having that purpose in life. We give them those opportunities, those outlets, and that support so they can continue to be that important part of the world that they want

to be. Our founders founded us thirty six years ago locally here in Central Texas. They were very forward thinking and knowing that in order for older adults to succeed, we had to support the family caregivers as well, because, as I mentioned, no one teaches you how to do this. I go and speak to elementary school students about aging and caregiving. As we grow up in our lives, we don't have many opportunities to watch other caregivers in action.

And then suddenly we're at the hospital with an emergency and we have no earthly idea what a medical power attorney is. Are do we know who the doctor is that prescribed this medication? Are like, No, I don't know any of the stuff. And so having a place that provides the resources, the education, the support, the shoulder to cry on whatever you need to help you connect to the resources and let you know that you're doing a fantastic job and we're right here behind you to help you.

And so that's available on our website, along with lots and lots of caregiving resources both local for our Central Texas area but also that are available nationally. And so I'll just give a plug to that. Our web page is Age of Central t X dot org. This is the ongoing threat through all of these care walks that we've done. You have to take care of yourself. You've got to keep yourself and put self care and make it a priority. And so speaking of that, while helping

other caregivers prioritize themselves at age. And by the way, that work sounds amazing that you're doing there. Do you rob have a self care routine to find that me time I do. I go to the gym, And that is not something I ever thought I would say out loud, but that has become something that I really enjoy doing. So I go to the gym and that is my time where I just disconnect and you know, I can listen to my inner voice while I do my workout routine.

The other thing that has been really wonderful is we bought a house seven years ago, but the grass never grew in in our backyard, so we just dug it all up and turned it into one huge flower garden. And he has a degree in botany, so that's something we've been able to share together is we have this big, beautiful flower garden. And so when I get home every day, the first thing I do is I walk outside and I go in the backyard and I just walk around

and look at the flowers. That has been my blessing that that's my escape, that I can just go out there look at the bees, the birds, the flower as the plants, go dig in the dirt, just kind of get lost in that for ten fifteen minutes. That kind of recharges my battery. And it's like O gamay to go. Oh, flowers always do it. They're just they they're just like it's serotonin for the brain and just give you so much. I mean, for me, I just grew up loving flowers

so much. My mother used to take me to flower shows in Philadelphia. Like my earliest memories are just what flat how flowers made me feel. And so I love hearing that. I would love to see a photo of that garden. I know, it's amazing. What do you have in there right now? What's coming up? Tulips? What do you have right now? My bearded iris are blooming, all of our trees are starting to bloom out. By hibiscus are starting to come up nice. Yeah, and all of

my roses are in full bloom. So it's really beautiful. I'm seeing all the colors as you say that. That is so great. So what are your favorite ways to incorporate movement in your schedule? Whenever I have the opportunity, I like to go out to the park and go walk, go jog My knees will hold up for that day. Uh. You know, one of the things you learn about yourself as you get older, your knees start going what in

the world are you doing? So, especially as a caregiver, Rob right exactly, because as you said earlier, you know, we tend to just feel that pain and we just pushed past it because we're so busy doing all these other things. We have to make note of that. Yeah, we have to listen to our bodies. Our bodies are telling us what's going on. We've got to tune into that. But just being able to go out and go walk in the park is fantastic because again, that's a great

way of recharging your battery. You're in nature, sunshine, the trees, the birds, just getting to see other people walk by, and that helps build you back up. I understand that you're a caregiver who does manage joint pain. We talked about your knees. How has joint pain affected your caregiving? Well,

obviously it does slow down. My father is six three and he was full grown, linebacker sized man by the time he was twelve, So he's a big guy, and so you know, helping him in and out of the car, and when when we use a wheelchair, or when I need to help him go to the bathroom. These types of things, you know, stooping, bending, standing it when you already have got joint pain, that just adds to it. And so that's why it's so important to make sure

that you're taking care of yourself. If you're feeling pain, go find out what it is. You know, don't let it keep getting worse, because that's not the right thing to do. As a caregiver. You're going to wear yourself down physically to the point where you can't continue to be effective in your journey and in helping the ones that you love. And so it's so important to get

it diagnosed and and look for your treatments. Rob, you seem like some that can handle everything, or people from the outside look look at you and go, uh, he's got it. Rob can handle it. He's doing this. He's down at age, he's got the parents who got the husband. You know. One of the things that I never did when I was a caregiver, and I'm still caregiving, but when I was caregiving from my father and my my son who had special needs at the same time, UM

was asked for help. I never asked for help. So what would you say to people listening who about the importance of asking for help and building a community to support you. That is the perfect question, you know. Honestly, if I were not in this job that I'm in, I would not know a lot that I do. And I seek caregivers every day that are struggling and who are suffering and who are hurting because they don't ask for help. And for most caregivers, it's not a natural

thing for us to do, you know. We we feel like, Okay, I'm the I'm the oldest son, this is what I'm supposed to do. I'm the oldest daughter, I'm the wife, I'm the husband, this is what I'm supposed to do. But there is so much involved in it that it's

not something that one person can do by themselves. I always tell caregivers there is never ever any shame in asking for help, because all of us need help at points in our lives, and there's nothing wrong with saying I don't know how to do this, or I don't know what the answer is for this, or I don't

know where to find this resource. And that's why organizations like Age of Central Texas, like the Area Agencies on Aging, like the Alzheimer's Associations, that the meals on Wheels, all these great organizations around the nation exists to help us as caregivers in this journey. And it is absolutely okay to say I'm a little lost and I don't know

what to do. People don't realize that this is in their most likely in their future, and I think that's something that we never you know, we like you said, it's not something we get educated on. I feel like two things should be taught in school, financial literacy and caregiving and how and how important that is. So do you talk to a lot of I mean, obviously you with your the organization, you talk to a lot of

other caregivers and you hear about these similar experiences. I think one of the things that helped me through my caregiving journey was talking to other caregivers, sharing experiences, having a sense of humor. I think that's very important. I found to be very helpful to try to approach it from a more positive point of view, and being able to talk with other caregivers gives you an opportunity to

learn from their journeys as well. You know, I always say that support groups are so important for caregiving because it's an opportunity to be with their folks that are going through the same things that you are, being able to just let stuff out and say, oh, my goodness, my husband did this the other day and it drove me absolutely insane, and yeah, and just to get it out so it's not in here festering all day long

in your brain. And have and have someone sitting there nodding along knowingly going yeah, I had the same thing happened. But also having people that have discovered resources maybe you haven't found. It's wonderful to have those like minds in a room to share together. Yes, how do you? How can listeners go about finding a community for support near them? So the a a r P is one of the greatest resources I have found nationally for finding resources on

the local level. You can look up a ARP dot org and you can find your community and they have resources listed there. The others the Area Agency on Aging. They are also a national resource. They are the follow through money of the Older Americans Act. So every community has an Area Agency on Aging. They can be a great clearing house of resources and information for your specific area.

Great resources are everything before we go, Rob, what what is one of your What would you say is one piece of advice you would give two caregivers listening, especially new caregivers, about finding joy in their work. I think it's always important to look at this journey as a cup that is half full, not a cup that's half empty.

It's not taking something away from your life. It's giving you opportunities that you wouldn't have otherwise, and look for those moments of joy, look for those opportunities to spend time with your loved one that you wouldn't have other wise. And you don't look back three years later and go, oh, I wish I really had, because no, you didn't know that you made the best choice with what you had and that was the right choice absolutely. I mean that

is you learned so much on this journey. You know, hindsight is everything, right, get to go back and you could go back and do this and do that, but no, that was your journey. You were learning and you knew what you knew and did the best you could with what you had. So Rob, thank you so much. This has been an awesome conversation, um when I was really looking forward to because that's a question I get all the time, Like you know, I'm this is such a

tough situation. How do we learn to embrace it and find and mind the joys from it? And so I think you gave us a lot to think about it and so many awesome resources, which is something we always need. So thank you again. Take care of yourself and your parents and your your husband, and I wish you well. Thank you, Holly, I appreciate this opportunity to visit with you. A big thank you again to Rob Phobian for joining

me today. Hearing more about his story just it really just reminded me about how many special moments caregiving offers for a loved one. I know how important it was for me to have that time with my father. Rob shared with us his favorite parts of caregiving for his partner and his dad and how he finds new ways to carve out me time while working around his own joint pain and remembering to ask for help, which makes him a better caregiver. Thanks again to Rob and you

for stopping by. That's it for today's episode. Come back next week when I chat with our guests, therapist and licensed clinical social worker Lindsay Pace about combating caregiver burnout. It's such an important conversation. Until then, keep walking and don't forget to take care of yourself too. Care Walks is produced by iHeart Radio in partnership with Volteren Arthritis pain Gel and hosted by me Holly Robinson Pete. Our executive producer is Molly Sosha. Our head engineer is Matt Stillo.

This episode was written and produced by Sierra Kaiser, with special thanks to our partners at g s K Platform, g s K, Weber, Shandwick and Edelman