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June 29, 2022 27 mins

Whether he is uplifting other caregivers or enjoying the unique opportunity to bond with a loved one, Rob Faubion’s genuine passion for caregiving is clear. For 24 years, Rob has been the primary caregiver for his husband with early-onset dementia while also helping support his elderly parents so they can continue to live independently. With his experience as the Chief Community Engagement Officer for The Austin Groups for the Elderly in Central Texas, Rob understands the importance of having the hard conversations with loved ones to ultimately build a healthy caregiving relationship. He shares his favorite memories as a caregiver, inspires others to cultivate a supportive community, and shares how to incorporate movement into a busy schedule. 

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Speaker 1 (00:00):
Hi everyone. I'm Holly Robinson, pete, actor, author, advocate, do
it All mom, and I'm also a caregiver. And this
is care Walks, a podcast from I Heart Radio and
volterin Arthritis Pain Gel. It's a show for family caregivers
who give everything to everyone and need to make time

for themselves through movement. Every episode is designed for you
to walk as you listen, so just think of me
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
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