July 28, 2021 • 25 mins
On this episode we talk to Marty Handlon, former mayor of Alabaster, AL about her journey as a care-partner.
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Speaker 1 (00:08):
Welcome to Dementia Real Talk by Karen Thrive, a podcast
to help you navigate life with dementia, presented by Blair Pharmacy.
Whether you're living with dementia or a care partner for
someone with dementia, join us to learn more about what
to expect and practical approaches to adapt your world to thrive.
Now welcome our host Jerry Young and certified dementia practitioner
(00:29):
and trainer Judy Pritchard.
Speaker 2 (00:44):
Welcome man, everyone, I'm Jerry Young along with Judy Pritchard
and Judy we got a fantastic podcast today.
Speaker 3 (00:51):
I couldn't be more excited about today's show and our
special guest today. And let me introduce you to you, everybody,
of our good friends, Marty Hanlin, who is the former
mayor of Alabaster, the city of Alabaster in Alabama, and
is now embarking on a whole new second career, second passion,
(01:12):
I believe, And so she has got just a wonderful
story to tell, and I'm just gonna let her really
turn it over to her and let her tell us
a little bit about yourself, Marty, and tell us about
your new journey.
Speaker 4 (01:26):
Oh wow, Okay, So you know, it's really funny because
you just never know where you're gonna be, and life
just kind of gives you curve balls, and you know,
just if you follow them, you'll find yourself in a
place that you never thought you would. And this this
(01:47):
new career, this new journey that I'm on in mental health,
I'm very excited to just start something totally totally different,
but something that I've become so passionate about just because
of the experience that I've had, not only personally with
my family, but also as mayor. While I was the mayor,
(02:12):
our community experienced mental health up close and personal, and
it was an awakening that I wasn't expecting. And so
I would have never guessed that I would find myself
back in school at my age. So the fact that
I'm doing that is a miracle in itself.
Speaker 2 (02:30):
Tell us a little bit about your personal story and
what led you to be passionate about mental health, you.
Speaker 4 (02:35):
Know, And Jerry, I'll tell you what's really interesting is
you don't know what you're in while you're in the
middle of it. It's really on the other side that
you can actually name it. And so, of course our
family experienced a real tragedy in twenty eleven when my
oldest son, my step son, Sean, had an accident that
(02:59):
left him a quadriplegic. And I really can't hardly talk
about that story without getting emotional.
Speaker 5 (03:05):
So I will tell you that he was.
Speaker 4 (03:07):
Twenty one years old and thinking that you know, he
was about to embark on a whole different life than
what he was left with. And so, you know, we
are a very faithful family, and we relied on our
fate the lot in that journey and just knew that
(03:28):
whatever whatever happens, that the Lord has a plan and
that we're going to have to trust him. But while
you're in the middle of that and you're working through it,
you you're still struggling. I mean, you are still struggling.
And it's not just Sean that was struggling with a
whole new life, but our whole family struggled through how
(03:51):
to adjust as a family. And so we we dealt
with a lot of emotions. There were there were de prey,
there was excitement, there was for you know what's happening.
But it truly is one of those things that you
while you're in the middle of it, you can't name it,
and so as a frustrated caregiver suffering from burnout, I
(04:19):
really couldn't. I really couldn't understand what we were all
going through, except that it was taking a really heavy
toll on each one of us.
Speaker 3 (04:29):
Was your background, Marty and anything around healthcare.
Speaker 5 (04:32):
No, I'm a CPA.
Speaker 4 (04:35):
I'm a numbers person. You know, it's black and white,
it's you know, there's no gray area. So there's truly
this is a huge shift for me and my personality.
Speaker 3 (04:45):
So even though even though this whole new world is
embarking on you and your family, you have a numbers background,
and all of a sudden, the world as it existed
with numbers in black and white, you turned into a
whole gray world.
Speaker 4 (05:00):
Oh yeah, questions because as parents, you know, we just
do we just do whatever we have to do with
what we're what we're faced with. And you know that's
you're pulling from parts of your personality or your skill
set that you may not have ever had to rely
on before. And so all I was doing was pulling
from that maternal love and encouragement, you know, cheerleading all
(05:25):
the way through it. And I was not a nurse,
so I honestly was learning as I go, and I'm
so thankful. I have friends who are nurses and they
were so helpful to me, and I will tell you
they got phone calls in the middle of the night,
you know, what do I do?
Speaker 5 (05:42):
What do I do?
Speaker 4 (05:43):
So you know, you just the village is always helpful
and I'm so thankful to have had that while we
were going through it. But it was learning a whole
new aspect of life.
Speaker 3 (05:55):
So when when the accident happened and you found out
Sean's condition, did you have so many of our care
partners that we discussed with in our families, we help
they get a diagnosis of dementia for themselves or their
loved ones, and then they're pretty much told that here's
(06:18):
your medication list and come on back when they make it.
A little bit of therapy and the initial parts are
a little bit of counseling, but then it's pretty much
crickets and they're out there on their own. Did you
find the same kind of situation with you?
Speaker 5 (06:30):
Absolutely?
Speaker 4 (06:31):
And that was probably the most overwhelming part of it all,
because while we were at the Shepherd Center, we had
somebody holding our hand and walking us through everything. And
then at the end of that stay, they go, Okay, well.
Speaker 5 (06:48):
You're going home.
Speaker 4 (06:49):
You know, when you get there, you need to find
a doctor for this and a doctor for that, and
you know, you just kind of go okay. And we
were all ready to go home. You know, when you've
been in a hospital environment for a short period of time,
you're ready to go home. But we were there six
weeks and so we're ready to go home. But then
(07:10):
when we got here, it was like, oh, we're doing
this solo. I mean, we don't have anybody to call
in to help us. And so the biggest thing for
me was not having a list of people, you know,
not knowing where to go for different things, and not
knowing what to expect when I called them. So, you know,
(07:33):
that was truly the most overwhelming part for me because
in the middle of caregiving, the physical part of caregiving,
I had the other coordinating and setting up and that
kind of stuff, and it just seemed to be overwhelming emotionally,
mentally and physically.
Speaker 3 (07:54):
I can't even imagine. But yet we see it time
and time again today with families we're working with. And
the thing that amazes me is, like you said, you
have to reach inside and you have to pull out
your love for the person you're caring for and let
that be your guiding force. How did you find your
(08:14):
Were there any tricks of the trade or any any
hints of how you were able to do that for
yourself and for your family.
Speaker 5 (08:21):
I prayed a lot. I truly did pray a lot.
Speaker 4 (08:25):
It truly was one of those things that forced me
to grow spiritually. I knew that I couldn't do it
on my own, and so I truly had to rely
on God to help me get through that each day,
that strength to just do it another day.
Speaker 3 (08:44):
Absolutely, How did you focus? Did you find yourself at
all focusing on the things that weren't going to be
or the things that Sean wasn't going to be able
to do.
Speaker 4 (08:56):
I didn't, but I know that Sean did, and I
know that Steve did, and I know that Jesse. You know,
the life and relationships that we had had known were
going to be different for all of us and all I.
Speaker 5 (09:11):
Because I was the primary.
Speaker 4 (09:12):
Caregiver, I couldn't really focus on, you know, what we
couldn't do together as a family because I was just
trying to make sure that Sean and I.
Speaker 5 (09:21):
Got through each day.
Speaker 4 (09:23):
And that was probably the most overwhelming part because I
felt like I was carrying that question all by myself,
where you know Steve and Sean is my stepson and
he is Steve's real son, I mean, you know, blood,
and so I know that it was more difficult for
(09:44):
Steve to kind of back away from from that. I
jumped in as that I'm your partner, and that's something
that was probably easier for me being a step parent.
Speaker 2 (09:58):
Marty, you mentioned burnout and if caregivers are listening right now,
care partners are listening to you, what when do you
realize that it's burnout and you have to step back
a minute? And what did you do to step away
from it?
Speaker 4 (10:15):
Well, in as side as and by it as the sounds.
When you feel yourself being angry at that person that
you're caring for, you know that you're getting to an
unhealthy place and that's you know, not taking into account
what they're going through emotionally or mentally. You're just thinking
(10:40):
I can't do this. You know, I got to do
this forever. It just everything seems to come crashing down.
And I think recognizing that early on is the best
thing that somebody can do and go I gotta have help.
And that's what I finally did, was like, I have
to have help. And so then that was the time
(11:03):
that we got a little bit of help.
Speaker 5 (11:04):
And then you're.
Speaker 4 (11:05):
Able to step back and look at things with a
little better perspective than when you're in it.
Speaker 2 (11:13):
Was there a routine every day for a while, and
how important was it to you to keep that routine
or did you want to break it? Well?
Speaker 4 (11:22):
And you know that's the thing when you're not a nurse,
you don't want to break something. And accountants kind of
go by a.
Speaker 2 (11:27):
Check break, break the routine. That's what I mean.
Speaker 4 (11:30):
I mean, that's what I'm saying. Accountants are like checklists people.
You know, it's all got a balance out. And so
you know that.
Speaker 5 (11:37):
Shepherd Center gave me a checklist, and I was going
to go by that checklist.
Speaker 4 (11:42):
And I didn't know enough to veer off of that checklist.
And and you know, so that was what I lived by,
and that having a little bit of more probably would
have I'd go, oh, I can fudge here. And a
funny story because you know, Shawn and I were so
very close. It was so funny because we were so
(12:05):
proud that we did the checklist. That was our thing,
and we went back for a visit. Jesse was playing
baseball travel baseball in Cobb County, and so Sewn and
I decided that we were going to make the trip
over and watch him play baseball. And while we were
over there, we were going to stop by the Shepherd
Center and see our therapist doctors, you know, for a
(12:28):
little visit.
Speaker 5 (12:29):
And they were gonna be so proud of us because
we had been, you know, doing everything.
Speaker 4 (12:34):
And so Seawn had to wear these socks, you know,
those what do you call the compression socks or whatever,
and there was just certain things that he had to
wear to kind of help him with his body temperature,
in blood pressure and stuff like that.
Speaker 5 (12:50):
And so we go in.
Speaker 4 (12:51):
There and I'm so proud that he looks good. He's
gained a little bit of weight, you know, I've been
feeding him good. And the counselor, she said, why is
your baby still wearing those socks? I thought we always
had to wear those socks, you know, And she starts
(13:14):
critique and the way he's dressed and the thing, I'm
just going, well, dang this it and near as exciting
I thought you were gonna be proud of me. So
you know, it's so funny they don't give you those
you know, like for the first six months you need
to wear all this stuff to kind of regulate his
body temperature, and you know, all these things that you
(13:36):
could slowly let go of. Oh no, they were on
my checklist, and you're gonna do it. I was gonna
do them because if something goes wrong, it ain't gonna
be my fault.
Speaker 5 (13:45):
So it's just.
Speaker 4 (13:46):
Funny, I mean, and I can laugh about it now, Jerry.
Back then, it broke my heart for them, for them
to point out all the things that I should have
been doing. So you know, I think just notice and
that when you start to feel some resentment, and it
can be little or it can just be a frustration
(14:09):
that you wouldn't normally feel, that's a time that you've
got to find a way to step back.
Speaker 2 (14:15):
Being a care partner with my mom. Someone tell me
one time that when your role as a care partner
her cripples you worse than the person that you're taking
care of, it's time to step away for a few minutes,
because if you continue to let that happen, then you're
no good as a care partner. In the future.
Speaker 5 (14:34):
Yes.
Speaker 4 (14:35):
And one of the doctors that we had at the
Lake Shore Foundation when we got home, she looked at
me and she said, you've got to find somebody to
help you with the medical physical part so that there's
enough left of you to be a parent, right because
if you were, if you're being the nurse caregiver, you
(14:57):
have nothing left to give from the parental part. And
that was so true because I couldn't. I didn't have
anything to give.
Speaker 3 (15:06):
That is such a key piece because I think a
lot a big thing that's hard for and we're working
with a lot of families of people with early on
that are young onset dementia, and so they're in the
prime of their lives and they're typically happily married and
still may have children in college. And switching from a
(15:27):
role as a spouse to a care partner, I think
is a very hard transition to make. But I think
that doctor's advice to you was fantastic because I can't
imagine how that was for you to be a mother
and then a care partner. And we say partner because
you need your loved ones, you want them involved in
(15:48):
what their care looks like and being active in their
care plan. So tell us a little bit about that.
How did that role shift happen and was it a
solid switch on and all or did it go back
and forth? How does that roll? How did you merge
the two roles?
Speaker 4 (16:05):
Well, you know, I think the first the first year
was one of those. It was that year they say,
if you're going to get any of your feeling back,
if he's going to get any movement back, it would
happen that first year. So that whole first year we
were filled with hope and looked for every positive sign
(16:26):
that came, and every little thing was a sign of
hope that it may get better. And as that year
came to a close, it really affected Sean emotionally and
mentally and he just quit trying and he just he
gave up. But I couldn't give up. And so that
(16:49):
was the thing was, you know, you can't give up,
and because I can't do it for both of us,
you have to be in it with me and we
have to do this together. And so that I think
that was just that was the big shift for us,
was that first year coming to a close.
Speaker 3 (17:06):
So did you really have a conversation with him around that? Oh?
Speaker 4 (17:10):
Yeah, But you know, he was, he was angry. You know,
he had he was still in the grieving process because
for the first year he had hope, right, and so
then the end of that first year he really had
to start grieving what really was never going to come
back in his mind and soul I was over the grieving.
(17:33):
You know, we grieved early on at the change, and
so it's just we were going through different phases at
different times.
Speaker 3 (17:43):
Oh, that's a very good point, very good point. And
I think our families go through that as well, because
they especially in the very beginning stages and very often
after initial diagnosis when they're younger. You know, they'll be
with their friend circles and they'll have a great day
and they'll get challenge with I don't really think he
has dementia, I forget just like that. And letting accepting
(18:07):
the diagnosis first, I think is difficult. But then having
to almost convince your friend's circle and your relatives of
the diagnosis and here's what we focus on. We're going
to focus on the abilities, and here's how you can
help him be as independent as possible.
Speaker 4 (18:25):
Yes, And that is huge because you know, the willingness
for them to take on a different aspect of life,
not how they've envisioned it the whole time. So, you know,
Sean of course went back to school because he was
in his senior year of college when the accident happened,
(18:45):
and so he had to finish that last semester and
so he's finishing his last semester totally different than what
he's attended college the first three and a half years,
and so that was frustrating for him. And so then
it's it's but what am I going to be able
to do and how will I be able to work
(19:07):
and under these circumstances, and so that was it was.
Speaker 5 (19:12):
It was just a long grieving process.
Speaker 4 (19:14):
And I will tell you there's no time, there's no
checklist for going through the graving process. It's it takes
people different different lengths of time.
Speaker 3 (19:24):
Absolutely, and allowing yourself to have that time and to
feel the emotions that you're feeling. I think that's so important.
And tell us a little bit about how you decided
to go on the path together as far as once
he once we got through that first year and the
new normal is what you were facing and how to
(19:48):
start really focusing on Okay, here's here's our new normal.
Where do we excel from here? What do we focus on?
Speaker 5 (19:54):
Well?
Speaker 4 (19:54):
And you know it's the parent can be the enabler
of an extended pereriod of grief and sadness, and that's
the parent has a hard time stepping away from that
enabling part. And you know, I think that's one you know,
God puts.
Speaker 5 (20:14):
Us where we are.
Speaker 4 (20:15):
I mean, because honestly, I was at that place that
I could do it, probably easier.
Speaker 5 (20:22):
Than his dad was able to do it.
Speaker 4 (20:25):
And it was I've got to just step back and
let you decide when you're ready to start.
Speaker 5 (20:32):
Working on this.
Speaker 4 (20:33):
And while you're deciding, I'm going to be putting my
attention in this direction.
Speaker 5 (20:40):
And so it was just him coming to that decision
all by himself.
Speaker 4 (20:45):
And I'll never forget the story that he told me
not too long ago, because he's in a much better
place now, you know, emotionally, mentally, a productive citizen who's
independently mobile at it's just amazing. But I remember asking him,
you know, what was it, what was it that finally
(21:07):
made you decide that you had to move forward? And
he said, my mom said.
Speaker 5 (21:17):
You know that coffee that you love every morning?
Speaker 4 (21:19):
And he said yeah, and he said, she said figure
out a way to get it, and that's tough love.
Speaker 3 (21:25):
That is tough love.
Speaker 5 (21:27):
And he said it.
Speaker 4 (21:28):
He cried, He cried like a baby, you know, and
then just had to muster up the strength to just try.
And once he tried, it was really really hard. But
each day it got easier. And that's where he said
it just kind of started, you know, making him feel
(21:49):
a little more accomplished, a little more able. And so
each growth phase that he's had throughout this process has
has just spent off.
Speaker 2 (22:00):
Marty. My story is as I was a care partner
from my mom for years, and so after that role
ended for me, I got involved with care and Thrive
because that's how I give back. I know, you have
a story. Now you've gone from CPA and mayor and
now of a sudden you're back in school and you're
going into mental health, a complete change. But it's how
(22:23):
you're giving of your time and your talents from what
you've been through, very similar to what we're doing here.
People that have been caregivers and they have so much
knowledge to give to other people, what do you tell
them about it's they're changing their life or their life's work,
their life path.
Speaker 4 (22:44):
You know, support is just huge, and it's not just
you know, support for people to help you do what
you have to do as a caregiver, but the support
and encouragement in that community of caregivers because people don't
understand what we go through and you really can't even
explain it to someone and so that they understand, and
(23:09):
so I think only a caregiver knows what that does
and and really the tolls that it takes on you,
Like you know, I didn't have time at the time
to think about what I'd lost because I was too
busy just working, but the rest of the family did,
(23:29):
and so you know, I think that whole support of
families that are going through that is huge.
Speaker 5 (23:37):
To just be that.
Speaker 4 (23:41):
That community of you know, let's share, because everybody in
this room, it's almost like a a you know, where
you go in and everybody just shares the bottom story,
you know, of how that everything. Everybody a group has
those places of safety that they need to be able
(24:03):
just to vent and nobody's going to judge them for
it because they've been there.
Speaker 3 (24:10):
Excellent, excellent point. I know where you've got another appointment
and you're a woman in demand, but we would love
to have you back if you are willing to come back.
I know you've got a lot going on in your
new passion, but would you think about coming back sometime
to share more of your story.
Speaker 4 (24:28):
Absolutely, I'd love to, And I thank y'all for doing this.
I mean, because it truly is a need just education
for people, because mental health became a passion because we
needed I needed to know more. You know, I found
myself in a position where I needed to try to understand.
And so that's the education of helping people understand that
(24:53):
this is normal.
Speaker 5 (24:55):
It's not something wrong with you.
Speaker 4 (24:57):
You know that this is a normal thing and you
just need the support to get through it.
Speaker 3 (25:02):
Absolutely. Well, good luck on your journey. Blessings to you
and your family and as Sean, thank you and please
stay in touch. We look forward to talking to you again.
Speaker 5 (25:12):
All right, Thanks so much, Marty, bye bye.
Speaker 1 (25:14):
Thanks thanks for listening, and be sure to follow us
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dot Karenthrive dot org. Subscribe to this podcast to your
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(25:35):
dot com. Let us produce a podcast.
Speaker 4 (25:37):
For you
Speaker 2 (25:40):
The purpose of this podcast is to educate, into and
form It is not a substitute for professional care by
a doctor or other qualified medical professionals.
Welcome to Dementia Real Talk by Karen Thrive, a podcast
to help you navigate life with dementia, presented by Blair Pharmacy.
Whether you're living with dementia or a care partner for
someone with dementia, join us to learn more about what
to expect and practical approaches to adapt your world to thrive.
Now welcome our host Jerry Young and certified dementia practitioner
(00:29):
and trainer Judy Pritchard.
Speaker 2 (00:44):
Welcome man, everyone, I'm Jerry Young along with Judy Pritchard
and Judy we got a fantastic podcast today.
Speaker 3 (00:51):
I couldn't be more excited about today's show and our
special guest today. And let me introduce you to you, everybody,
of our good friends, Marty Hanlin, who is the former
mayor of Alabaster, the city of Alabaster in Alabama, and
is now embarking on a whole new second career, second passion,
(01:12):
I believe, And so she has got just a wonderful
story to tell, and I'm just gonna let her really
turn it over to her and let her tell us
a little bit about yourself, Marty, and tell us about
your new journey.
Speaker 4 (01:26):
Oh wow, Okay, So you know, it's really funny because
you just never know where you're gonna be, and life
just kind of gives you curve balls, and you know,
just if you follow them, you'll find yourself in a
place that you never thought you would. And this this
(01:47):
new career, this new journey that I'm on in mental health,
I'm very excited to just start something totally totally different,
but something that I've become so passionate about just because
of the experience that I've had, not only personally with
my family, but also as mayor. While I was the mayor,
(02:12):
our community experienced mental health up close and personal, and
it was an awakening that I wasn't expecting. And so
I would have never guessed that I would find myself
back in school at my age. So the fact that
I'm doing that is a miracle in itself.
Speaker 2 (02:30):
Tell us a little bit about your personal story and
what led you to be passionate about mental health, you.
Speaker 4 (02:35):
Know, And Jerry, I'll tell you what's really interesting is
you don't know what you're in while you're in the
middle of it. It's really on the other side that
you can actually name it. And so, of course our
family experienced a real tragedy in twenty eleven when my
oldest son, my step son, Sean, had an accident that
(02:59):
left him a quadriplegic. And I really can't hardly talk
about that story without getting emotional.
Speaker 5 (03:05):
So I will tell you that he was.
Speaker 4 (03:07):
Twenty one years old and thinking that you know, he
was about to embark on a whole different life than
what he was left with. And so, you know, we
are a very faithful family, and we relied on our
fate the lot in that journey and just knew that
(03:28):
whatever whatever happens, that the Lord has a plan and
that we're going to have to trust him. But while
you're in the middle of that and you're working through it,
you you're still struggling. I mean, you are still struggling.
And it's not just Sean that was struggling with a
whole new life, but our whole family struggled through how
(03:51):
to adjust as a family. And so we we dealt
with a lot of emotions. There were there were de prey,
there was excitement, there was for you know what's happening.
But it truly is one of those things that you
while you're in the middle of it, you can't name it,
and so as a frustrated caregiver suffering from burnout, I
(04:19):
really couldn't. I really couldn't understand what we were all
going through, except that it was taking a really heavy
toll on each one of us.
Speaker 3 (04:29):
Was your background, Marty and anything around healthcare.
Speaker 5 (04:32):
No, I'm a CPA.
Speaker 4 (04:35):
I'm a numbers person. You know, it's black and white,
it's you know, there's no gray area. So there's truly
this is a huge shift for me and my personality.
Speaker 3 (04:45):
So even though even though this whole new world is
embarking on you and your family, you have a numbers background,
and all of a sudden, the world as it existed
with numbers in black and white, you turned into a
whole gray world.
Speaker 4 (05:00):
Oh yeah, questions because as parents, you know, we just
do we just do whatever we have to do with
what we're what we're faced with. And you know that's
you're pulling from parts of your personality or your skill
set that you may not have ever had to rely
on before. And so all I was doing was pulling
from that maternal love and encouragement, you know, cheerleading all
(05:25):
the way through it. And I was not a nurse,
so I honestly was learning as I go, and I'm
so thankful. I have friends who are nurses and they
were so helpful to me, and I will tell you
they got phone calls in the middle of the night,
you know, what do I do?
Speaker 5 (05:42):
What do I do?
Speaker 4 (05:43):
So you know, you just the village is always helpful
and I'm so thankful to have had that while we
were going through it. But it was learning a whole
new aspect of life.
Speaker 3 (05:55):
So when when the accident happened and you found out
Sean's condition, did you have so many of our care
partners that we discussed with in our families, we help
they get a diagnosis of dementia for themselves or their
loved ones, and then they're pretty much told that here's
(06:18):
your medication list and come on back when they make it.
A little bit of therapy and the initial parts are
a little bit of counseling, but then it's pretty much
crickets and they're out there on their own. Did you
find the same kind of situation with you?
Speaker 5 (06:30):
Absolutely?
Speaker 4 (06:31):
And that was probably the most overwhelming part of it all,
because while we were at the Shepherd Center, we had
somebody holding our hand and walking us through everything. And
then at the end of that stay, they go, Okay, well.
Speaker 5 (06:48):
You're going home.
Speaker 4 (06:49):
You know, when you get there, you need to find
a doctor for this and a doctor for that, and
you know, you just kind of go okay. And we
were all ready to go home. You know, when you've
been in a hospital environment for a short period of time,
you're ready to go home. But we were there six
weeks and so we're ready to go home. But then
(07:10):
when we got here, it was like, oh, we're doing
this solo. I mean, we don't have anybody to call
in to help us. And so the biggest thing for
me was not having a list of people, you know,
not knowing where to go for different things, and not
knowing what to expect when I called them. So, you know,
(07:33):
that was truly the most overwhelming part for me because
in the middle of caregiving, the physical part of caregiving,
I had the other coordinating and setting up and that
kind of stuff, and it just seemed to be overwhelming emotionally,
mentally and physically.
Speaker 3 (07:54):
I can't even imagine. But yet we see it time
and time again today with families we're working with. And
the thing that amazes me is, like you said, you
have to reach inside and you have to pull out
your love for the person you're caring for and let
that be your guiding force. How did you find your
(08:14):
Were there any tricks of the trade or any any
hints of how you were able to do that for
yourself and for your family.
Speaker 5 (08:21):
I prayed a lot. I truly did pray a lot.
Speaker 4 (08:25):
It truly was one of those things that forced me
to grow spiritually. I knew that I couldn't do it
on my own, and so I truly had to rely
on God to help me get through that each day,
that strength to just do it another day.
Speaker 3 (08:44):
Absolutely, How did you focus? Did you find yourself at
all focusing on the things that weren't going to be
or the things that Sean wasn't going to be able
to do.
Speaker 4 (08:56):
I didn't, but I know that Sean did, and I
know that Steve did, and I know that Jesse. You know,
the life and relationships that we had had known were
going to be different for all of us and all I.
Speaker 5 (09:11):
Because I was the primary.
Speaker 4 (09:12):
Caregiver, I couldn't really focus on, you know, what we
couldn't do together as a family because I was just
trying to make sure that Sean and I.
Speaker 5 (09:21):
Got through each day.
Speaker 4 (09:23):
And that was probably the most overwhelming part because I
felt like I was carrying that question all by myself,
where you know Steve and Sean is my stepson and
he is Steve's real son, I mean, you know, blood,
and so I know that it was more difficult for
(09:44):
Steve to kind of back away from from that. I
jumped in as that I'm your partner, and that's something
that was probably easier for me being a step parent.
Speaker 2 (09:58):
Marty, you mentioned burnout and if caregivers are listening right now,
care partners are listening to you, what when do you
realize that it's burnout and you have to step back
a minute? And what did you do to step away
from it?
Speaker 4 (10:15):
Well, in as side as and by it as the sounds.
When you feel yourself being angry at that person that
you're caring for, you know that you're getting to an
unhealthy place and that's you know, not taking into account
what they're going through emotionally or mentally. You're just thinking
(10:40):
I can't do this. You know, I got to do
this forever. It just everything seems to come crashing down.
And I think recognizing that early on is the best
thing that somebody can do and go I gotta have help.
And that's what I finally did, was like, I have
to have help. And so then that was the time
(11:03):
that we got a little bit of help.
Speaker 5 (11:04):
And then you're.
Speaker 4 (11:05):
Able to step back and look at things with a
little better perspective than when you're in it.
Speaker 2 (11:13):
Was there a routine every day for a while, and
how important was it to you to keep that routine
or did you want to break it? Well?
Speaker 4 (11:22):
And you know that's the thing when you're not a nurse,
you don't want to break something. And accountants kind of
go by a.
Speaker 2 (11:27):
Check break, break the routine. That's what I mean.
Speaker 4 (11:30):
I mean, that's what I'm saying. Accountants are like checklists people.
You know, it's all got a balance out. And so
you know that.
Speaker 5 (11:37):
Shepherd Center gave me a checklist, and I was going
to go by that checklist.
Speaker 4 (11:42):
And I didn't know enough to veer off of that checklist.
And and you know, so that was what I lived by,
and that having a little bit of more probably would
have I'd go, oh, I can fudge here. And a
funny story because you know, Shawn and I were so
very close. It was so funny because we were so
(12:05):
proud that we did the checklist. That was our thing,
and we went back for a visit. Jesse was playing
baseball travel baseball in Cobb County, and so Sewn and
I decided that we were going to make the trip
over and watch him play baseball. And while we were
over there, we were going to stop by the Shepherd
Center and see our therapist doctors, you know, for a
(12:28):
little visit.
Speaker 5 (12:29):
And they were gonna be so proud of us because
we had been, you know, doing everything.
Speaker 4 (12:34):
And so Seawn had to wear these socks, you know,
those what do you call the compression socks or whatever,
and there was just certain things that he had to
wear to kind of help him with his body temperature,
in blood pressure and stuff like that.
Speaker 5 (12:50):
And so we go in.
Speaker 4 (12:51):
There and I'm so proud that he looks good. He's
gained a little bit of weight, you know, I've been
feeding him good. And the counselor, she said, why is
your baby still wearing those socks? I thought we always
had to wear those socks, you know, And she starts
(13:14):
critique and the way he's dressed and the thing, I'm
just going, well, dang this it and near as exciting
I thought you were gonna be proud of me. So
you know, it's so funny they don't give you those
you know, like for the first six months you need
to wear all this stuff to kind of regulate his
body temperature, and you know, all these things that you
(13:36):
could slowly let go of. Oh no, they were on
my checklist, and you're gonna do it. I was gonna
do them because if something goes wrong, it ain't gonna
be my fault.
Speaker 5 (13:45):
So it's just.
Speaker 4 (13:46):
Funny, I mean, and I can laugh about it now, Jerry.
Back then, it broke my heart for them, for them
to point out all the things that I should have
been doing. So you know, I think just notice and
that when you start to feel some resentment, and it
can be little or it can just be a frustration
(14:09):
that you wouldn't normally feel, that's a time that you've
got to find a way to step back.
Speaker 2 (14:15):
Being a care partner with my mom. Someone tell me
one time that when your role as a care partner
her cripples you worse than the person that you're taking
care of, it's time to step away for a few minutes,
because if you continue to let that happen, then you're
no good as a care partner. In the future.
Speaker 5 (14:34):
Yes.
Speaker 4 (14:35):
And one of the doctors that we had at the
Lake Shore Foundation when we got home, she looked at
me and she said, you've got to find somebody to
help you with the medical physical part so that there's
enough left of you to be a parent, right because
if you were, if you're being the nurse caregiver, you
(14:57):
have nothing left to give from the parental part. And
that was so true because I couldn't. I didn't have
anything to give.
Speaker 3 (15:06):
That is such a key piece because I think a
lot a big thing that's hard for and we're working
with a lot of families of people with early on
that are young onset dementia, and so they're in the
prime of their lives and they're typically happily married and
still may have children in college. And switching from a
(15:27):
role as a spouse to a care partner, I think
is a very hard transition to make. But I think
that doctor's advice to you was fantastic because I can't
imagine how that was for you to be a mother
and then a care partner. And we say partner because
you need your loved ones, you want them involved in
(15:48):
what their care looks like and being active in their
care plan. So tell us a little bit about that.
How did that role shift happen and was it a
solid switch on and all or did it go back
and forth? How does that roll? How did you merge
the two roles?
Speaker 4 (16:05):
Well, you know, I think the first the first year
was one of those. It was that year they say,
if you're going to get any of your feeling back,
if he's going to get any movement back, it would
happen that first year. So that whole first year we
were filled with hope and looked for every positive sign
(16:26):
that came, and every little thing was a sign of
hope that it may get better. And as that year
came to a close, it really affected Sean emotionally and
mentally and he just quit trying and he just he
gave up. But I couldn't give up. And so that
(16:49):
was the thing was, you know, you can't give up,
and because I can't do it for both of us,
you have to be in it with me and we
have to do this together. And so that I think
that was just that was the big shift for us,
was that first year coming to a close.
Speaker 3 (17:06):
So did you really have a conversation with him around that? Oh?
Speaker 4 (17:10):
Yeah, But you know, he was, he was angry. You know,
he had he was still in the grieving process because
for the first year he had hope, right, and so
then the end of that first year he really had
to start grieving what really was never going to come
back in his mind and soul I was over the grieving.
(17:33):
You know, we grieved early on at the change, and
so it's just we were going through different phases at
different times.
Speaker 3 (17:43):
Oh, that's a very good point, very good point. And
I think our families go through that as well, because
they especially in the very beginning stages and very often
after initial diagnosis when they're younger. You know, they'll be
with their friend circles and they'll have a great day
and they'll get challenge with I don't really think he
has dementia, I forget just like that. And letting accepting
(18:07):
the diagnosis first, I think is difficult. But then having
to almost convince your friend's circle and your relatives of
the diagnosis and here's what we focus on. We're going
to focus on the abilities, and here's how you can
help him be as independent as possible.
Speaker 4 (18:25):
Yes, And that is huge because you know, the willingness
for them to take on a different aspect of life,
not how they've envisioned it the whole time. So, you know,
Sean of course went back to school because he was
in his senior year of college when the accident happened,
(18:45):
and so he had to finish that last semester and
so he's finishing his last semester totally different than what
he's attended college the first three and a half years,
and so that was frustrating for him. And so then
it's it's but what am I going to be able
to do and how will I be able to work
(19:07):
and under these circumstances, and so that was it was.
Speaker 5 (19:12):
It was just a long grieving process.
Speaker 4 (19:14):
And I will tell you there's no time, there's no
checklist for going through the graving process. It's it takes
people different different lengths of time.
Speaker 3 (19:24):
Absolutely, and allowing yourself to have that time and to
feel the emotions that you're feeling. I think that's so important.
And tell us a little bit about how you decided
to go on the path together as far as once
he once we got through that first year and the
new normal is what you were facing and how to
(19:48):
start really focusing on Okay, here's here's our new normal.
Where do we excel from here? What do we focus on?
Speaker 5 (19:54):
Well?
Speaker 4 (19:54):
And you know it's the parent can be the enabler
of an extended pereriod of grief and sadness, and that's
the parent has a hard time stepping away from that
enabling part. And you know, I think that's one you know,
God puts.
Speaker 5 (20:14):
Us where we are.
Speaker 4 (20:15):
I mean, because honestly, I was at that place that
I could do it, probably easier.
Speaker 5 (20:22):
Than his dad was able to do it.
Speaker 4 (20:25):
And it was I've got to just step back and
let you decide when you're ready to start.
Speaker 5 (20:32):
Working on this.
Speaker 4 (20:33):
And while you're deciding, I'm going to be putting my
attention in this direction.
Speaker 5 (20:40):
And so it was just him coming to that decision
all by himself.
Speaker 4 (20:45):
And I'll never forget the story that he told me
not too long ago, because he's in a much better
place now, you know, emotionally, mentally, a productive citizen who's
independently mobile at it's just amazing. But I remember asking him,
you know, what was it, what was it that finally
(21:07):
made you decide that you had to move forward? And
he said, my mom said.
Speaker 5 (21:17):
You know that coffee that you love every morning?
Speaker 4 (21:19):
And he said yeah, and he said, she said figure
out a way to get it, and that's tough love.
Speaker 3 (21:25):
That is tough love.
Speaker 5 (21:27):
And he said it.
Speaker 4 (21:28):
He cried, He cried like a baby, you know, and
then just had to muster up the strength to just try.
And once he tried, it was really really hard. But
each day it got easier. And that's where he said
it just kind of started, you know, making him feel
(21:49):
a little more accomplished, a little more able. And so
each growth phase that he's had throughout this process has
has just spent off.
Speaker 2 (22:00):
Marty. My story is as I was a care partner
from my mom for years, and so after that role
ended for me, I got involved with care and Thrive
because that's how I give back. I know, you have
a story. Now you've gone from CPA and mayor and
now of a sudden you're back in school and you're
going into mental health, a complete change. But it's how
(22:23):
you're giving of your time and your talents from what
you've been through, very similar to what we're doing here.
People that have been caregivers and they have so much
knowledge to give to other people, what do you tell
them about it's they're changing their life or their life's work,
their life path.
Speaker 4 (22:44):
You know, support is just huge, and it's not just
you know, support for people to help you do what
you have to do as a caregiver, but the support
and encouragement in that community of caregivers because people don't
understand what we go through and you really can't even
explain it to someone and so that they understand, and
(23:09):
so I think only a caregiver knows what that does
and and really the tolls that it takes on you,
Like you know, I didn't have time at the time
to think about what I'd lost because I was too
busy just working, but the rest of the family did,
(23:29):
and so you know, I think that whole support of
families that are going through that is huge.
Speaker 5 (23:37):
To just be that.
Speaker 4 (23:41):
That community of you know, let's share, because everybody in
this room, it's almost like a a you know, where
you go in and everybody just shares the bottom story,
you know, of how that everything. Everybody a group has
those places of safety that they need to be able
(24:03):
just to vent and nobody's going to judge them for
it because they've been there.
Speaker 3 (24:10):
Excellent, excellent point. I know where you've got another appointment
and you're a woman in demand, but we would love
to have you back if you are willing to come back.
I know you've got a lot going on in your
new passion, but would you think about coming back sometime
to share more of your story.
Speaker 4 (24:28):
Absolutely, I'd love to, And I thank y'all for doing this.
I mean, because it truly is a need just education
for people, because mental health became a passion because we
needed I needed to know more. You know, I found
myself in a position where I needed to try to understand.
And so that's the education of helping people understand that
(24:53):
this is normal.
Speaker 5 (24:55):
It's not something wrong with you.
Speaker 4 (24:57):
You know that this is a normal thing and you
just need the support to get through it.
Speaker 3 (25:02):
Absolutely. Well, good luck on your journey. Blessings to you
and your family and as Sean, thank you and please
stay in touch. We look forward to talking to you again.
Speaker 5 (25:12):
All right, Thanks so much, Marty, bye bye.
Speaker 1 (25:14):
Thanks thanks for listening, and be sure to follow us
on Facebook at karen Thrive and visit our website www
dot Karenthrive dot org. Subscribe to this podcast to your
favorite podcasting platform. This podcast is produced by your podcastnow
(25:35):
dot com. Let us produce a podcast.
Speaker 4 (25:37):
For you
Speaker 2 (25:40):
The purpose of this podcast is to educate, into and
form It is not a substitute for professional care by
a doctor or other qualified medical professionals.
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