June 15, 2022 • 27 mins
Sometimes we don’t realize we need to take a step back from caregiving to reconnect with our loved ones and the larger communities we’re a part of. Laketa Caston has been a dedicated caregiver to multiple family members in need over the years. She knows all too well how isolating caregiving can be without the support of others and acknowledges how self-care is equally important as caring for others. Laketa shares how she has found ways to combat isolation through movement, creativity, and a close connection to her community. She is also launching “Caring for Caregivers,” an organization that will offer respite and resources for self-care to those dedicating time to their loved ones.
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Episode Transcript
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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
(00:22):
for themselves through movement. Every episode is designed for you
to walk as you listen, so just think of me
and my guests as your 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,
(00:47):
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. So thanks
for joining us on what will be another great episode
of care Walks. How has your week been? Were you
(01:09):
able to take some time for yourself? Don't forget to
lean on your support systems and find ways to connect
and reconnect with the people and activities you love outside
of your caregiving responsibilities. Just a 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, then
(01:29):
go check out our bridged version of the same episode.
It's like cliff notes for podcasts. I asked earlier about
connecting with others, and that's because today's episode is all
about the importance of finding and maintaining a community as
a caregiver. It's so easy to become an island and
feel like you're all by yourself in this role, and
(01:50):
that isolation can lead to depression. When I was younger,
I didn't realize how much caregiver isolation was affecting me.
And that's why I'm so glad that we can share
care walks together, because you don't have to do this
all on your own. Today, I'll be joined by caregiver
Lakida Casting. Lakida has served as a caregiver to multiple
(02:11):
family members. In her first two caregiving experiences with her
aunt and uncle, Lakida frequently felt alone and without any support.
When another aunt of hers became ill, she was determined
to make sure her cousin didn't go through the same
sense of isolation. She did. Lakida volunteered to help her
cousin and her aunt, and she is now taking on
(02:33):
a new mission with her organization, caring for Caregivers. Before
we get to my conversation with Lakida, let's get walking.
A great mantra for today's conversation will be I am
stronger when I ask for help. Whenever you're to do
(02:54):
list pops up during this walk, say that to yourself,
I am stronger when I ask for help. Feel your
feet connecting with the ground on each step. What do
you notice about the way each part of your body
works together to keep you in movement. Your feet can't
do all the work. They connect with your knees, your arms,
(03:19):
your lungs, all working in harmony. Let's take a couple
of deep breaths together and through the nose, out through
the mouth one more time, and through your nose and
(03:39):
out through your mouth. If you're someone who is responsible
for the care of someone in your life, you know
that sometimes it can feel incredibly isolating, but you are
not alone. With each step you take, think about someone
who has been there for you. How do you feel
(04:00):
when you let someone support you the same way you
support others? Now As you start to settle into your
pace and your breath, remember to stay present in this moment.
And when you start to think about your daily to
do list again, remember today's mantra, I am stronger when
(04:20):
I ask for help. Keep moving and give yourself time
to recharge. I'm going to be there in your ear,
keeping you company. Alongside our guest and fellow caregiver, Lakida Casting.
I'm here with Lakida Casting. Lakida is a family caregiver
(04:44):
based in Detroit. Lakida first began her caregiving journey when
her aunt reached out looking for help caring for Lakida's uncle.
Shortly after, her aunt passed away from cancer, but Lakia
stayed in Baton Rouge and cared for her uncle alone
for five years as he battled Alzheimer's dissease. Today, Lakida
(05:07):
is still caring for her family members, but no longer alone.
She supports her cousin as they care for his mother
together and build the organization Caring for Caregivers, which provides
support and respite to family caregivers. Lakda Welcome to care Walks.
Thank you, thank you. I'm so happy to be here.
I'm happy to have you so, could you tell us
(05:29):
about how you first became a caregiver. It was the
most extraordinary thing. My aunt was ill. I didn't know
how ill she was, and she called me one day.
I was living in Illinois. She called me one day
and said, you know what, I need somebody here. Your
uncle and I are getting a little older and we
need somebody staying in the house. Could you come down
(05:51):
and help us out? And so I came down and
two weeks later she passed away. She had stage four
lung cancer. She was an opera singer, so she sounded
so strong over the phone. No one knew she was
as ill as she was. And when I got down
there and I saw her how emaciated she was, it
kind of it scared me a little bit. But if
(06:15):
you knew her life, you would know that she had
lived a wonderful life. It was as amazing to see
the love that she had for her husband. She told
me that he was suffering from short term memory loss,
but I found out that it was Alzheimer's and he
was doing pretty well, pretty good at first, but it
(06:37):
became worse and worse, of course as years went by.
I'm so glad you got that chance to be with her.
She sounded like an amazing woman, your aunt, just the
fact that she reached out and you were able to
come and connect with her, and then you shifted your
focus to her husband, your uncle. Yes, my uncle was
a very very intelligent man. He was Jean of Engineering
(07:01):
at Southern University, and I was not used to him
being the way he was, so to watch him decline
that way was a bit unnerving, But every day you
have to get used to a new normal. But I
got to know him in a way that I I
don't think anyone else knew him, and that was a
(07:23):
consoling thought for me. Oh wow, what what would you
say that caregiving means to you? Likida? Caregiving means giving
back to the people and your life who have given
so much to you. My aunt and my uncle were
amazing human because they didn't have children, so they gave
(07:45):
to us. I would get tickets to her show she
she sang and Porking Best at the Metropolitan Opera. He
traveled the world, and there were always little gifts and
things that they would send to us as nieces and
nephews of their sisters and brothers. And they gave so
much of themselves to everyone else that you have to
(08:06):
give back to those people. And that's what family caregiving
means to me. Even now I have a cousin, he
is the only child, and watching him trying to care
for my aunt, I really said, no, I can't have
him go through what I went through by myself. So
I just kind of moved back here. What do you
(08:29):
wish that you knew before you became a caregiver? Ms Holly,
let me tell you. I wish that I knew things
that I still don't know. I want to know everything
about the disease I'm still learning. I want to know
everything about the disease. I want to know what the element.
I want to know where doctors. I want to know everything,
(08:51):
and I still don't know everything. What I will say
is self care is important. That you make sure you
take care of yourself. That's one thing that I wish
I had done a lot better. Make sure that I
take my walks, make sure that I get to the
gym when I can, make sure my doctor's visits are
(09:12):
scheduled and that I keep them. Those are the things
that I want to tell other care care of his
family caregivers. Yes, amen to that that's you know, as
I'm asking you these questions, I'm answering myself in my head.
And that is the number one thing I wish I
knew too, just to take a little bit better care
of myself while I was caring for for my dad.
(09:35):
It's so difficult and if you can't hold up, you
can't hold up others. So you need to hold yourself
up and care for yourself. If you know anything about
caring for anybody, you know that that person needs to
get out the house. You know that person probably has
laundry that needs to be done. Don't wait for them
to ask, Just come over, drop off a meal. I
(09:57):
was telling somebody just drop off. It would be nice
if somebody mud just drop off ham, you know, some chicken.
Just drop it off, so maybe I don't have to cook. Yes,
that is true, That is true. But I think my
takeaway is that I should have asked, even though I
felt like my brother should have known he saw what
I was dealing with. I should have picked up the
(10:19):
phone and said I need help? Can you bring me
some food? And I think that we have to self
advocate because we can't expect other people to just, you know,
just just to have that mindset. Yeah. Yes, you mentioned
that you were on your own as a caregiver in
Baton Rouge. And since then have you been able to
(10:40):
talk to your friends and your family about your feelings
and your experience. Yes, I have, And as a matter
of fact, my daughters would come and visit me when
they could. We all live in separate states, so they
came and visited when they could, and they would give
me a break or let me go for a weekend
just to get some rest, because that's that's what's needed.
(11:01):
I started Caring for Caregivers, a foundation where I want
to supply respee care for family caregivers and that's it.
Maybe they need a massage and home massage or hair done,
just something to make them feel like themselves. They're not
always a caregiver every single moment of every single day,
(11:21):
because that's what you are as a family caregiver. Absolutely,
caring for caregivers sounds like an awesome resource, just an
opportunity just find community. And yes, that was something that
I wish I had. I found it was very difficult
to find resources for caregiver support, yes, and I felt
(11:45):
very isolated. So how do you how would you suggest
caregivers best combat feelings of isolation. The way I did
it was going back to something that I loved when
I was younger. I went to cass Tech here where
I majored in performing arts, and of course I couldn't
(12:05):
do that. They're in bad and rouge. I couldn't really
do a lot of theatrical things. But I became a
costume designer for community theater there, so I did a
lot of costume design and then I ended up acting.
And that was one thing that my uncle was then
still for. He would love to go because my aunt
was not for sinker. He would love to go to
(12:26):
the theater and just sit and watch, doesn't matter whether
those rehearsals. And that was one thing that was constant.
And then isn't it wonderful? Your theater community is amazing.
They're all family, so they would sit there with him.
He became everyone's uncle, and it was amazing how they
treated him. The first role that I played in was
(12:46):
Dot by Coleman Domingo, and it's about a woman who
has Alzheimer's. Wow, And it was so prophetic. It was amazing.
I was able to like channel some things from him
and totally understand where that character came from. So I
loved how everyone rallied around my uncle, and I loved
(13:08):
how I was able to do that and he was
able to see it. I don't know whether he understood
everything about it, but he always had a kiss on
the cheek from me when I came on stage. And um,
um man, I'm tearing up from that. Wow. That never No,
that's so emotional. That's that's a great memory. Though, that's
(13:29):
a great memory. We'll be right back with more from
Lokida Caston. And now back to my conversation with Lakida
casting So let's talk a little bit about self care.
(13:53):
Tell me what you do, what's your me time? What
does that look like? My me time is is writing
and reading to my aunt. And actually I just wrote
a screenplay called Decline about a woman's decline while she's
being a caregiver, and it got selected into film festivals,
(14:15):
so hopefully I'll be able to get it produced. And
it's just a short film, it's nothing major, but I
want to be able to show that to people, the
effects that that caregiving has on a person when there
with another person who needs them constantly every single day,
(14:36):
and look, you know, how has that writing? How is
writing decline? How has that been cathartic and or therapeutic
for you? It got so much out of me, It
got so much out I was able to write down
inwards the things that I were I was feeling, the
things that I was going through, And hopefully when people
(14:59):
see it or read it, they can identify with and
even people who are not able to identify with caregiving
now family caregiving now they can look at it and say, Okay,
I understand and I will be able to do better
with my own family or my own person that I'm
caring for. So that has helped me. You mentioned that
(15:24):
finding a community theater when you are taking care of
your uncle, and then you've also written this this screenplay
as well. How how has art made you feel less
isolated as a caregiver. Art is something that I don't
know how anyone else feels about it, But in my
lowest moments, in the days when I'm down, I can
(15:46):
look as beautiful dance, read a wonderful book, see a
painting that just makes you want to cry, and it
opens up a whole new world to you. Not only
that art as therapy music something that is wonderful for
people with Alzheimer's and or dementia. When I couldn't relate
(16:08):
to my uncle in any kind of way, I would
put on some classical music and oh that man, he
would calm down. And he was a big man too,
he was about six ft six ft one. And when
he didn't want to do something, he didn't want to
do it, or he didn't want to eat something, he
didn't want to eat it. But when I would put
on music, his whole demeanor would change. And that's just
(16:30):
what art does. Art moves people, no matter what frame
my mind you have, it can move. Yes, for my dad,
it was Ray Charles. If I put some Ray Charles on,
he would perk up. Oh my god, everything about Ray
Charles and play it and listen to it. Yes, it
was everything. I mean, Ray Charles was everything and um
(16:54):
and so I totally understand how that music and the
arts can really penetrate all of these situations that are happening.
And I love hearing that. And so, how has your
approach to caregiving and being a caregiver evolved and changed?
We we talked about, you know, letting people know what
you need, and that was certainly something that if I
(17:16):
could go back and be in that situation again, I
would have maybe advocated for myself a little more. But
what would you say your how your approach has changed
from the time you first became a caregiver. I don't
feel like I have to take everything on and don't
take things personally. There's always a little bit of ego
(17:38):
in everything that we do. It has to be done
this way, it has to be done that way. Just
let things go. I don't feel like you have to
do everything. And that's how I feel now with my
aunt and with my my my cousin, who is wonderful.
(17:58):
That's one thing I'll invite more people in. Yes, and
the patients right, So patients is uh, Yes, it's something
that I learned. How did I didn't think I had
the patients to be a caregiver? Uh? No, long term?
But you develop it, you develop it, and it's something
that is very, very tangible. You don't know how impatient
(18:21):
you are until you have to be patient. Yes, that
was another thing that I did. You find it your
You had to really develop your patients muscle. Yes, and
that even more still than you do with the children.
I know you have children that I have three girls,
and children are different than grown adults. You know, of
(18:43):
course they're setting their ways and we're setting our ways.
But uh so there's always a conflict. There's always a
little bit more of a conflict, I think when you're
dealing with adult family, who needs more assistance. So, yes,
patients is more than a virtue. You have to work
at it. You really have to work at this a process.
(19:06):
So on top of the emotional dedication that caregiving requires,
there's a lot of physical work. You're lifting your you're
you're walking, you're running, you're chasing, you're You're doing so
much stuff. I wanted to know how how has that
affected your body and furthermore, how has it depicted your
(19:27):
joint pain. It's been a struggle. Some days are are
better than others, but still I'm a little up there
in age, so it's more of a struggle. And that's
where self care comes in. Of course, you have to exercise,
You have to keep on your routines that you do
for yourself in order to keep your body in shape.
(19:50):
In order to do these things that you need to
do for your loved one, you really do you push
through the physicality right. So if you're hurting and your
joints are hurting, or you're not feeling good physically, you
just push through it. And that's that's where we have
to stop as caregivers and really recognize that we have
(20:11):
to take care of ourselves in a real tangible way
as caregivers. We just have to pay attention of family caregivers.
They suffer from, like you were saying earlier, isolation and depression.
And if you're depressed, you don't know how to push
through sometimes, so getting that outside to help, the therapy,
(20:33):
the support groups, if you can find one, it's very
important so that you can push the isolation and depression. Yes,
the isolation is something that rarely has talked about in
our caregiver community. I don't ever remember talking about isolation
or feeling isolated. And during my caregiving years, and I
started caregiving a very young age at nineteen from my dad. Yeah,
(20:57):
I was nineteen years old when he got parking since disease,
and I never discussed the isolation. Now, I was young,
you know now, So I bet you cried about it.
I bet you cried about it. I did, and it
manifested itself in other ways right, It came out in
other ways and other conversations. It was really more about
(21:19):
the frustration and the sadness I had about my father
and how he was. His body was degenerating and with
his perfect sins, and he also had dementia, so that
was difficult at the same time. But being so young,
you know, I absorbed a lot of it, but I did.
I did emotionally feel that I probably could have really
(21:39):
used some help and and be able to find somewhere
in the community that I could talk about the isolation
I was feeling. I remember your father, I remember him,
my daddy, the o g the original God. Yeah, you
have to be you have to be a certain age
to remember my dad's Gordon Um from six to seventy three.
(22:02):
But yes, he was like America's father for a while.
It was really an amazing time. He was a remarkable
man and got Parkinson so young in his forties and
it was just difficult, yeah, really difficult, And I didn't
There was no no search engines back then, so I
(22:23):
couldn't really get much information about it. My question for
you is when when do you know you need to
reach out to others for help or support? What are
the what what are the signs? I think when you're angry,
the frustration kicks in. I think that's when you need
to make sure that you reach out. Because God bless him,
(22:46):
there were some days that I was just like, would
you please just do as I asked, Let's get this done.
That's why I said earlier, I I'm I'm not gonna
be that picky about things that need to be exactly
the way you're gonna put on these socks, you're gonna
put on these pants, you know what you want to
wear your under wear outside, You're you're jim shorts. We're
(23:08):
not going intwhere today? Fine, but yeah, just just when
you start getting so frustrated that you're frustrated at your
loved one and you're frustrated at yourself, that's when you
need to go out and you need to talk, and
you need to talk to someone quickly. And how important
is it for you to talk to and connect with
other caregivers like minded people. I mean, I'm just having
(23:32):
a great time talking to you because I feel like
we get each other right, We understand what we've been through,
what we're going through. I first one to a caregiver
support group when I was about nineteen or twenty, and
I felt so good after talking to other caregivers and
other families dealing with Parkinson's at the time, I felt
(23:55):
so heard and seen. Really felt like that helped me
early on. So I always encourage caregivers to get together
and talk, most definitely because didn't you feel a little bit.
I don't know about you, but I felt a little
awkward even when I took my uncle out. Not awkward
(24:15):
about him and his condition. I felt awkward that other
people would look at him or maybe laugh or or
I just felt like I didn't want him to be judged,
and I didn't want me to be judged. I just
didn't like the idea of someone mocking him. So I
love to be able to be around people who understood
(24:36):
the situation and there was no judgment. Even though caregiving can,
you know, have a big mental and physical demand. We've
talked about that. What have been some of your favorite
parts of being a caregiver? Getting to know me? Knowing
who I am and what I'm capable of. Days that
(25:00):
I didn't think i'd have the strength to do certain things,
I found out I was able to do it, and
I was able to persevere. I love that. Wow, this
has been a great interview. And again, so many years ago,
I would never even be able to have a podcast.
Well they didn't have podcasts back then. But even on
(25:21):
the radio and even on TV, you didn't hear caregivers
talking to each other about what they're experiencing and caring
for a loved one and what that brings. So I've
really enjoyed this conversation and I'm so glad to meet
you and connect with you. And Wow, I just hope
that we are able to connect again. And when you
(25:42):
get caring for caregivers up and going, please let me
know I'll definitely amplify it for you. Thank you so much.
I do appreciate that you're welcome, and it's been wonderful
speaking with you too. I'm so proud of you. I
really am. I did not know you started this at
nineteen years old. I don't know if I could have
handled it, but oh my goodness, I'm proud of you.
Thank you, and look at how much you are thriving.
(26:03):
Thank you so much. You know, when I was nineteen,
I didn't a lot of people didn't say that to me.
They didn't say, oh, you know, you're doing a great job.
I'm proud of you, and I think that was part
of my you know, I just I think it was
just supposed to take care of my daddy. That was
my job. And uh, I really appreciate you saying that.
Oh well, I am. It was a lot of work,
(26:27):
but it was so worth it it is. Thank you
so much, Lakida. I just really appreciate talking to you.
Take care of yourself. Thank you you two. Thanks again
to Lakida Caston for joining me today. Hearing more about
her story really reminded me how proud every caregiver should
be of themselves, not only for the time they dedicate
(26:50):
to their loved one, but also for finding joy in
that process and being able to share that joy with others.
That's it for today's episode. Joe and Us next time
with physical trainer and fitness educator Pete McCall, together will
explore the importance of mobility and strength training for caregivers
with joint pain due to arthritis. Until our next walk,
(27:13):
don't forget to find the support you need and take
care of yourself too. Care Walks is produced by I
Heart Radio in partnership with volter In Arthritis Pain Jael
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
(27:36):
thanks to our partners at g s K Platform, GSK,
Weber Shandwick, and Edelman
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
(00:22):
for themselves through movement. Every episode is designed for you
to walk as you listen, so just think of me
and my guests as your 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,
(00:47):
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. So thanks
for joining us on what will be another great episode
of care Walks. How has your week been? Were you
(01:09):
able to take some time for yourself? Don't forget to
lean on your support systems and find ways to connect
and reconnect with the people and activities you love outside
of your caregiving responsibilities. Just a 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, then
(01:29):
go check out our bridged version of the same episode.
It's like cliff notes for podcasts. I asked earlier about
connecting with others, and that's because today's episode is all
about the importance of finding and maintaining a community as
a caregiver. It's so easy to become an island and
feel like you're all by yourself in this role, and
(01:50):
that isolation can lead to depression. When I was younger,
I didn't realize how much caregiver isolation was affecting me.
And that's why I'm so glad that we can share
care walks together, because you don't have to do this
all on your own. Today, I'll be joined by caregiver
Lakida Casting. Lakida has served as a caregiver to multiple
(02:11):
family members. In her first two caregiving experiences with her
aunt and uncle, Lakida frequently felt alone and without any support.
When another aunt of hers became ill, she was determined
to make sure her cousin didn't go through the same
sense of isolation. She did. Lakida volunteered to help her
cousin and her aunt, and she is now taking on
(02:33):
a new mission with her organization, caring for Caregivers. Before
we get to my conversation with Lakida, let's get walking.
A great mantra for today's conversation will be I am
stronger when I ask for help. Whenever you're to do
(02:54):
list pops up during this walk, say that to yourself,
I am stronger when I ask for help. Feel your
feet connecting with the ground on each step. What do
you notice about the way each part of your body
works together to keep you in movement. Your feet can't
do all the work. They connect with your knees, your arms,
(03:19):
your lungs, all working in harmony. Let's take a couple
of deep breaths together and through the nose, out through
the mouth one more time, and through your nose and
(03:39):
out through your mouth. If you're someone who is responsible
for the care of someone in your life, you know
that sometimes it can feel incredibly isolating, but you are
not alone. With each step you take, think about someone
who has been there for you. How do you feel
(04:00):
when you let someone support you the same way you
support others? Now As you start to settle into your
pace and your breath, remember to stay present in this moment.
And when you start to think about your daily to
do list again, remember today's mantra, I am stronger when
(04:20):
I ask for help. Keep moving and give yourself time
to recharge. I'm going to be there in your ear,
keeping you company. Alongside our guest and fellow caregiver, Lakida Casting.
I'm here with Lakida Casting. Lakida is a family caregiver
(04:44):
based in Detroit. Lakida first began her caregiving journey when
her aunt reached out looking for help caring for Lakida's uncle.
Shortly after, her aunt passed away from cancer, but Lakia
stayed in Baton Rouge and cared for her uncle alone
for five years as he battled Alzheimer's dissease. Today, Lakida
(05:07):
is still caring for her family members, but no longer alone.
She supports her cousin as they care for his mother
together and build the organization Caring for Caregivers, which provides
support and respite to family caregivers. Lakda Welcome to care Walks.
Thank you, thank you. I'm so happy to be here.
I'm happy to have you so, could you tell us
(05:29):
about how you first became a caregiver. It was the
most extraordinary thing. My aunt was ill. I didn't know
how ill she was, and she called me one day.
I was living in Illinois. She called me one day
and said, you know what, I need somebody here. Your
uncle and I are getting a little older and we
need somebody staying in the house. Could you come down
(05:51):
and help us out? And so I came down and
two weeks later she passed away. She had stage four
lung cancer. She was an opera singer, so she sounded
so strong over the phone. No one knew she was
as ill as she was. And when I got down
there and I saw her how emaciated she was, it
kind of it scared me a little bit. But if
(06:15):
you knew her life, you would know that she had
lived a wonderful life. It was as amazing to see
the love that she had for her husband. She told
me that he was suffering from short term memory loss,
but I found out that it was Alzheimer's and he
was doing pretty well, pretty good at first, but it
(06:37):
became worse and worse, of course as years went by.
I'm so glad you got that chance to be with her.
She sounded like an amazing woman, your aunt, just the
fact that she reached out and you were able to
come and connect with her, and then you shifted your
focus to her husband, your uncle. Yes, my uncle was
a very very intelligent man. He was Jean of Engineering
(07:01):
at Southern University, and I was not used to him
being the way he was, so to watch him decline
that way was a bit unnerving, But every day you
have to get used to a new normal. But I
got to know him in a way that I I
don't think anyone else knew him, and that was a
(07:23):
consoling thought for me. Oh wow, what what would you
say that caregiving means to you? Likida? Caregiving means giving
back to the people and your life who have given
so much to you. My aunt and my uncle were
amazing human because they didn't have children, so they gave
(07:45):
to us. I would get tickets to her show she
she sang and Porking Best at the Metropolitan Opera. He
traveled the world, and there were always little gifts and
things that they would send to us as nieces and
nephews of their sisters and brothers. And they gave so
much of themselves to everyone else that you have to
(08:06):
give back to those people. And that's what family caregiving
means to me. Even now I have a cousin, he
is the only child, and watching him trying to care
for my aunt, I really said, no, I can't have
him go through what I went through by myself. So
I just kind of moved back here. What do you
(08:29):
wish that you knew before you became a caregiver? Ms Holly,
let me tell you. I wish that I knew things
that I still don't know. I want to know everything
about the disease I'm still learning. I want to know
everything about the disease. I want to know what the element.
I want to know where doctors. I want to know everything,
(08:51):
and I still don't know everything. What I will say
is self care is important. That you make sure you
take care of yourself. That's one thing that I wish
I had done a lot better. Make sure that I
take my walks, make sure that I get to the
gym when I can, make sure my doctor's visits are
(09:12):
scheduled and that I keep them. Those are the things
that I want to tell other care care of his
family caregivers. Yes, amen to that that's you know, as
I'm asking you these questions, I'm answering myself in my head.
And that is the number one thing I wish I
knew too, just to take a little bit better care
of myself while I was caring for for my dad.
(09:35):
It's so difficult and if you can't hold up, you
can't hold up others. So you need to hold yourself
up and care for yourself. If you know anything about
caring for anybody, you know that that person needs to
get out the house. You know that person probably has
laundry that needs to be done. Don't wait for them
to ask, Just come over, drop off a meal. I
(09:57):
was telling somebody just drop off. It would be nice
if somebody mud just drop off ham, you know, some chicken.
Just drop it off, so maybe I don't have to cook. Yes,
that is true, That is true. But I think my
takeaway is that I should have asked, even though I
felt like my brother should have known he saw what
I was dealing with. I should have picked up the
(10:19):
phone and said I need help? Can you bring me
some food? And I think that we have to self
advocate because we can't expect other people to just, you know,
just just to have that mindset. Yeah. Yes, you mentioned
that you were on your own as a caregiver in
Baton Rouge. And since then have you been able to
(10:40):
talk to your friends and your family about your feelings
and your experience. Yes, I have, And as a matter
of fact, my daughters would come and visit me when
they could. We all live in separate states, so they
came and visited when they could, and they would give
me a break or let me go for a weekend
just to get some rest, because that's that's what's needed.
(11:01):
I started Caring for Caregivers, a foundation where I want
to supply respee care for family caregivers and that's it.
Maybe they need a massage and home massage or hair done,
just something to make them feel like themselves. They're not
always a caregiver every single moment of every single day,
(11:21):
because that's what you are as a family caregiver. Absolutely,
caring for caregivers sounds like an awesome resource, just an
opportunity just find community. And yes, that was something that
I wish I had. I found it was very difficult
to find resources for caregiver support, yes, and I felt
(11:45):
very isolated. So how do you how would you suggest
caregivers best combat feelings of isolation. The way I did
it was going back to something that I loved when
I was younger. I went to cass Tech here where
I majored in performing arts, and of course I couldn't
(12:05):
do that. They're in bad and rouge. I couldn't really
do a lot of theatrical things. But I became a
costume designer for community theater there, so I did a
lot of costume design and then I ended up acting.
And that was one thing that my uncle was then
still for. He would love to go because my aunt
was not for sinker. He would love to go to
(12:26):
the theater and just sit and watch, doesn't matter whether
those rehearsals. And that was one thing that was constant.
And then isn't it wonderful? Your theater community is amazing.
They're all family, so they would sit there with him.
He became everyone's uncle, and it was amazing how they
treated him. The first role that I played in was
(12:46):
Dot by Coleman Domingo, and it's about a woman who
has Alzheimer's. Wow, And it was so prophetic. It was amazing.
I was able to like channel some things from him
and totally understand where that character came from. So I
loved how everyone rallied around my uncle, and I loved
(13:08):
how I was able to do that and he was
able to see it. I don't know whether he understood
everything about it, but he always had a kiss on
the cheek from me when I came on stage. And um,
um man, I'm tearing up from that. Wow. That never No,
that's so emotional. That's that's a great memory. Though, that's
(13:29):
a great memory. We'll be right back with more from
Lokida Caston. And now back to my conversation with Lakida
casting So let's talk a little bit about self care.
(13:53):
Tell me what you do, what's your me time? What
does that look like? My me time is is writing
and reading to my aunt. And actually I just wrote
a screenplay called Decline about a woman's decline while she's
being a caregiver, and it got selected into film festivals,
(14:15):
so hopefully I'll be able to get it produced. And
it's just a short film, it's nothing major, but I
want to be able to show that to people, the
effects that that caregiving has on a person when there
with another person who needs them constantly every single day,
(14:36):
and look, you know, how has that writing? How is
writing decline? How has that been cathartic and or therapeutic
for you? It got so much out of me, It
got so much out I was able to write down
inwards the things that I were I was feeling, the
things that I was going through, And hopefully when people
(14:59):
see it or read it, they can identify with and
even people who are not able to identify with caregiving
now family caregiving now they can look at it and say, Okay,
I understand and I will be able to do better
with my own family or my own person that I'm
caring for. So that has helped me. You mentioned that
(15:24):
finding a community theater when you are taking care of
your uncle, and then you've also written this this screenplay
as well. How how has art made you feel less
isolated as a caregiver. Art is something that I don't
know how anyone else feels about it, But in my
lowest moments, in the days when I'm down, I can
(15:46):
look as beautiful dance, read a wonderful book, see a
painting that just makes you want to cry, and it
opens up a whole new world to you. Not only
that art as therapy music something that is wonderful for
people with Alzheimer's and or dementia. When I couldn't relate
(16:08):
to my uncle in any kind of way, I would
put on some classical music and oh that man, he
would calm down. And he was a big man too,
he was about six ft six ft one. And when
he didn't want to do something, he didn't want to
do it, or he didn't want to eat something, he
didn't want to eat it. But when I would put
on music, his whole demeanor would change. And that's just
(16:30):
what art does. Art moves people, no matter what frame
my mind you have, it can move. Yes, for my dad,
it was Ray Charles. If I put some Ray Charles on,
he would perk up. Oh my god, everything about Ray
Charles and play it and listen to it. Yes, it
was everything. I mean, Ray Charles was everything and um
(16:54):
and so I totally understand how that music and the
arts can really penetrate all of these situations that are happening.
And I love hearing that. And so, how has your
approach to caregiving and being a caregiver evolved and changed?
We we talked about, you know, letting people know what
you need, and that was certainly something that if I
(17:16):
could go back and be in that situation again, I
would have maybe advocated for myself a little more. But
what would you say your how your approach has changed
from the time you first became a caregiver. I don't
feel like I have to take everything on and don't
take things personally. There's always a little bit of ego
(17:38):
in everything that we do. It has to be done
this way, it has to be done that way. Just
let things go. I don't feel like you have to
do everything. And that's how I feel now with my
aunt and with my my my cousin, who is wonderful.
(17:58):
That's one thing I'll invite more people in. Yes, and
the patients right, So patients is uh, Yes, it's something
that I learned. How did I didn't think I had
the patients to be a caregiver? Uh? No, long term?
But you develop it, you develop it, and it's something
that is very, very tangible. You don't know how impatient
(18:21):
you are until you have to be patient. Yes, that
was another thing that I did. You find it your
You had to really develop your patients muscle. Yes, and
that even more still than you do with the children.
I know you have children that I have three girls,
and children are different than grown adults. You know, of
(18:43):
course they're setting their ways and we're setting our ways.
But uh so there's always a conflict. There's always a
little bit more of a conflict, I think when you're
dealing with adult family, who needs more assistance. So, yes,
patients is more than a virtue. You have to work
at it. You really have to work at this a process.
(19:06):
So on top of the emotional dedication that caregiving requires,
there's a lot of physical work. You're lifting your you're
you're walking, you're running, you're chasing, you're You're doing so
much stuff. I wanted to know how how has that
affected your body and furthermore, how has it depicted your
(19:27):
joint pain. It's been a struggle. Some days are are
better than others, but still I'm a little up there
in age, so it's more of a struggle. And that's
where self care comes in. Of course, you have to exercise,
You have to keep on your routines that you do
for yourself in order to keep your body in shape.
(19:50):
In order to do these things that you need to
do for your loved one, you really do you push
through the physicality right. So if you're hurting and your
joints are hurting, or you're not feeling good physically, you
just push through it. And that's that's where we have
to stop as caregivers and really recognize that we have
(20:11):
to take care of ourselves in a real tangible way
as caregivers. We just have to pay attention of family caregivers.
They suffer from, like you were saying earlier, isolation and depression.
And if you're depressed, you don't know how to push
through sometimes, so getting that outside to help, the therapy,
(20:33):
the support groups, if you can find one, it's very
important so that you can push the isolation and depression. Yes,
the isolation is something that rarely has talked about in
our caregiver community. I don't ever remember talking about isolation
or feeling isolated. And during my caregiving years, and I
started caregiving a very young age at nineteen from my dad. Yeah,
(20:57):
I was nineteen years old when he got parking since disease,
and I never discussed the isolation. Now, I was young,
you know now, So I bet you cried about it.
I bet you cried about it. I did, and it
manifested itself in other ways right, It came out in
other ways and other conversations. It was really more about
(21:19):
the frustration and the sadness I had about my father
and how he was. His body was degenerating and with
his perfect sins, and he also had dementia, so that
was difficult at the same time. But being so young,
you know, I absorbed a lot of it, but I did.
I did emotionally feel that I probably could have really
(21:39):
used some help and and be able to find somewhere
in the community that I could talk about the isolation
I was feeling. I remember your father, I remember him,
my daddy, the o g the original God. Yeah, you
have to be you have to be a certain age
to remember my dad's Gordon Um from six to seventy three.
(22:02):
But yes, he was like America's father for a while.
It was really an amazing time. He was a remarkable
man and got Parkinson so young in his forties and
it was just difficult, yeah, really difficult, And I didn't
There was no no search engines back then, so I
(22:23):
couldn't really get much information about it. My question for
you is when when do you know you need to
reach out to others for help or support? What are
the what what are the signs? I think when you're angry,
the frustration kicks in. I think that's when you need
to make sure that you reach out. Because God bless him,
(22:46):
there were some days that I was just like, would
you please just do as I asked, Let's get this done.
That's why I said earlier, I I'm I'm not gonna
be that picky about things that need to be exactly
the way you're gonna put on these socks, you're gonna
put on these pants, you know what you want to
wear your under wear outside, You're you're jim shorts. We're
(23:08):
not going intwhere today? Fine, but yeah, just just when
you start getting so frustrated that you're frustrated at your
loved one and you're frustrated at yourself, that's when you
need to go out and you need to talk, and
you need to talk to someone quickly. And how important
is it for you to talk to and connect with
other caregivers like minded people. I mean, I'm just having
(23:32):
a great time talking to you because I feel like
we get each other right, We understand what we've been through,
what we're going through. I first one to a caregiver
support group when I was about nineteen or twenty, and
I felt so good after talking to other caregivers and
other families dealing with Parkinson's at the time, I felt
(23:55):
so heard and seen. Really felt like that helped me
early on. So I always encourage caregivers to get together
and talk, most definitely because didn't you feel a little bit.
I don't know about you, but I felt a little
awkward even when I took my uncle out. Not awkward
(24:15):
about him and his condition. I felt awkward that other
people would look at him or maybe laugh or or
I just felt like I didn't want him to be judged,
and I didn't want me to be judged. I just
didn't like the idea of someone mocking him. So I
love to be able to be around people who understood
(24:36):
the situation and there was no judgment. Even though caregiving can,
you know, have a big mental and physical demand. We've
talked about that. What have been some of your favorite
parts of being a caregiver? Getting to know me? Knowing
who I am and what I'm capable of. Days that
(25:00):
I didn't think i'd have the strength to do certain things,
I found out I was able to do it, and
I was able to persevere. I love that. Wow, this
has been a great interview. And again, so many years ago,
I would never even be able to have a podcast.
Well they didn't have podcasts back then. But even on
(25:21):
the radio and even on TV, you didn't hear caregivers
talking to each other about what they're experiencing and caring
for a loved one and what that brings. So I've
really enjoyed this conversation and I'm so glad to meet
you and connect with you. And Wow, I just hope
that we are able to connect again. And when you
(25:42):
get caring for caregivers up and going, please let me
know I'll definitely amplify it for you. Thank you so much.
I do appreciate that you're welcome, and it's been wonderful
speaking with you too. I'm so proud of you. I
really am. I did not know you started this at
nineteen years old. I don't know if I could have
handled it, but oh my goodness, I'm proud of you.
Thank you, and look at how much you are thriving.
(26:03):
Thank you so much. You know, when I was nineteen,
I didn't a lot of people didn't say that to me.
They didn't say, oh, you know, you're doing a great job.
I'm proud of you, and I think that was part
of my you know, I just I think it was
just supposed to take care of my daddy. That was
my job. And uh, I really appreciate you saying that.
Oh well, I am. It was a lot of work,
(26:27):
but it was so worth it it is. Thank you
so much, Lakida. I just really appreciate talking to you.
Take care of yourself. Thank you you two. Thanks again
to Lakida Caston for joining me today. Hearing more about
her story really reminded me how proud every caregiver should
be of themselves, not only for the time they dedicate
(26:50):
to their loved one, but also for finding joy in
that process and being able to share that joy with others.
That's it for today's episode. Joe and Us next time
with physical trainer and fitness educator Pete McCall, together will
explore the importance of mobility and strength training for caregivers
with joint pain due to arthritis. Until our next walk,
(27:13):
don't forget to find the support you need and take
care of yourself too. Care Walks is produced by I
Heart Radio in partnership with volter In Arthritis Pain Jael
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
(27:36):
thanks to our partners at g s K Platform, GSK,
Weber Shandwick, and Edelman
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