February 27, 2025 • 25 mins
Join us for an enlightening conversation with Debbie Compton, a veteran caregiver and advocate, as she unpacks the emotional complexities of caregiving for loved ones with Alzheimer’s, Parkinson’s, and vascular dementia. Through personal anecdotes and powerful insights, Debbie shares her transformative journey from a successful business career to a passionate caregiver, highlighting the unexpected lessons she learned along the way.
In this episode, we delve into the heart-wrenching yet inspiring stories that illustrate the dual nature of caregiving: the joy intertwined with sorrow. Debbie recounts pivotal moments that not only challenged her resolve but also deepened her connection with her loved ones, showcasing the resilience and love inherent in caregiving. As she shares practical strategies for maintaining positivity, we discuss the significance of focusing on gratitude and support.
This episode is a profound reminder of the love that exists in even the most challenging caregiving situations. Whether you are currently in the throes of caring for a loved one or seeking to understand the journey, this conversation will uplift and inspire you. Tune in for Debbie's expert insights, heartfelt stories, and guidance on how to embrace this journey with grace and hope. Don’t forget to subscribe and share your thoughts with us!
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Episode Transcript
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Speaker 1 (00:01):
Welcome.
This is Raina Nises, your hostof a Season of Caring podcast,
where we share stories of hopefor family caregivers breaking
through the busyness andloneliness of caregiving to see
God even in the midst of thisseason.
Today, I'm excited to introduceyou to Debbie Compton.
Debbie is a passionatethree-time primary caregiver for
her parents with Alzheimer's,parkinson's and vascular
(00:23):
dementia.
As a speaker, she brings hopeand laughter to caregivers in
dementia issues, easing thestress of her audience.
Since 2017, debbie has been acommunity educator for the
Alzheimer's Association.
She has authored 10 books,including Caregiving how to Hold
On While Letting Go, where sheshares her hard-earned knowledge
, perspective and faith.
(00:43):
Debbie's latest book, theCaregiver's Advocate A Complete
Guide to Support and Resources,is a collaboration between 21
authors in four countries.
It's an internationalbestseller and an Amazon number
one new release.
Debbie is the founder of thePurple Vine, where she supports
caregivers through one-on-oneZoom consultations, a blog,
(01:04):
online trainings and a weeklynewsletter.
Welcome, debbie, I'm so glad tohave you here today.
Thank you for having me.
Raina, it's good to be here.
So I know you have threedifferent stories, but introduce
us a little bit to those thatyou've cared for and share what
those seasons look like.
Speaker 2 (01:18):
Sure, well, I was in business, business leadership,
traveling coast to coast, lovinglife, had my plan in place.
I had been with the company for15 years and I planned on
retiring there.
My mom had already beendiagnosed with vascular dementia
, but she was very highfunctioning and I didn't know
enough to realize that there wasa train coming on that journey.
(01:39):
So then my dad developedParkinson's and started
requiring more care.
The big warning sign there wasthat when I was out on the coast
which I actually live inOklahoma, right in the center of
the US, so I was on the EastCoast when dad accidentally took
mom's pills and had to berushed to the hospital.
He was nearly comatose.
He had low blood pressure, shehad high.
(02:02):
Could have been fatal rightthere, but praise God it was not
.
Another time mom passed out atthe daily living center, had to
(02:22):
be rushed to the hospital and Iwas on the other coast.
So the third straw my mothermental clarity to walk next door
to the neighbor's house thatshe'd known for over 40 years.
Instead she got in her car andsat and waited until her
daughter got home from work,possibly seven, eight hours, and
only by the grace of God shesurvived.
That was my wake up call.
That was the realization thatsomething had to be done.
(02:44):
They were not safe any longer,so I became a three-time primary
caregiver for the three of them.
So I started studying a lot,learning everything that I could
about their diseases.
They're all different forms ofdementia, right, so they have
some similarities, but thenthere are differences as well
the diseases.
So I studied and read andresearched and tried to do the
(03:06):
best that I could, learned somuch on the journey.
And then when my mother-in-lawa few years later now we had her
living with us at that point intime, when she was passing in
our home I brought hospice inmuch too late because I didn't
know any better.
Had them come in, they saw someof the things that my husband
and I had created to make lifesafer.
And the little hospice nursesaid where did you read about
(03:29):
that?
And I just laughed.
I'm like I didn't read about itanywhere.
This is called survival.
And so she said the sentencethat changed my life.
She said other caregivers needto know about this.
It would really help them.
And it hit me.
I was just.
I was stunned because I thoughtI'm the last one to the party.
(03:50):
Everybody else has this figuredout, you know.
Everybody else knows whatthey're doing.
It's just me fumbling aroundout here in the dark and I was
so wrong.
But that's how I felt.
So I went to bed, I prayed aboutit, went to sleep, woke up the
next morning and knew this iswhy I went through this, so that
I can help other people,because I can relate to them
(04:11):
whether they keep their lovedone at home, like we did with my
dad in his home, because hewould not move in with us very
stubborn man and so we had tocome up with a way to honor that
and still take care of him.
We moved my mother-in-law inwith us.
She passed here in my home andthen my mom I had to put in a
(04:32):
memory care facility in themiddle of COVID and it broke my
heart.
I felt like I let her down.
This is horrible, but sheoutweighed me by 35 pounds and
she was passing out and it wasnot a sustainable situation.
So I cried and cried and cried,put her in the memory care and
then I realized that was myperception that I was letting
her down.
She had a great time.
(04:53):
She was surrounded by friends,new people, activities to do.
She had a great time.
It was just me that was feelingall this guilt and all this
upset and everything else thatyou can imagine.
So I founded the Purple Vine,as you mentioned, and I just try
to help caregivers in any waythat I can, predominantly
(05:17):
through speeches and one-on-oneZoom consultations.
Speaker 1 (05:20):
It is that journey that all of us are on.
There are a lot more resourcesthan there were when we started
our caregiving with my mom, backin 86.
But definitely within even justthe last 10 years, I think
there's been significantly morebooks published and more things
available to help families.
But I do think that one of thereasons why I love support
(05:43):
groups is because living it andtalking to people that have
lived it I think can make such apowerful impact on your
caregiving season and thosefeelings, like you said, that
the guilt or the struggles thatyou're having.
Others can express that as well, and it really does help us to
get a different perspective andto be able to see things from a
(06:04):
different mindset.
So share with us a favoritecaregiving story?
Speaker 2 (06:11):
Oh goodness, A favorite one or a?
I'll tell you about a dramaticone.
How's that it was.
Oh, this was just.
This was so dramatic.
But I was scrubbing the toiletfor the third time that day.
My mother-in-law couldn't findit, couldn't see it.
I didn't know the things that Iknow now that you can do to
(06:31):
actually make that much better.
So I was scrubbing the floorfor the third time that day.
I'd been up about five nightsin a row with very, very little
sleep and I was exhaustedMentally, physically,
emotionally.
I was just worn out.
And so I'm crying while I'mcleaning this and I'm thinking I
don't know how much longer Ican do this.
I don't know what I'm going todo.
(06:53):
And then the scriptures came tome Greater is he that is in me
than he that is in the world.
I can do all things, even scrubthis bathroom floor for the
third time, through Christ, whogives me strength, and his
mercies are new every morning.
Great is thy faithfulness.
That's Limitations 323.
That is one that all caregiversneed to remember.
(07:15):
The others are great too.
They're wonderful, they're veryhelpful.
But Limitations really spoke tome because, as a caregiver, you
have to, when you go to bed,put that day to rest.
It's gone.
You can't change anything thatyou did wrong, anything that you
wish you would have donedifferently.
A word spoken harshly, youcannot change it, so let it go
(07:38):
and just accept the forgivenessand try to do better and start
each day fresh.
Each day is a new day.
That is my biggest tip forsurviving caregiving and
thriving in caregiving yeah,definitely.
Speaker 1 (07:53):
And I love that his word.
It applies and we really canrun to it and find those truths
that can make such a bigdifference.
So you just said how you had tokind of make it up as you went.
What would you say would be themost surprising thing about
caregiving for you?
Speaker 2 (08:11):
Hallucinations.
I had never been around anyonewho had hallucinations before.
And then dad is suddenlytelling me about aliens
tunneling into the house and I'mlike what?
And so I researched andresearched and all I could find
was don't argue with them.
Okay, well, that's a goodstarting point, because you
(08:31):
don't want to argue with them.
You should never argue withsomeone with dementia.
You're not going to win.
And not only that they see,hear, smell and believe what
they are experiencing.
So who are you to tell themthat it's not true and that it's
not real?
So sometimes and this is a hardone for caregivers, and I don't
mean to stomp on toes, but wecan be a little bit arrogant,
(08:53):
thinking that, hey, I knowreality, I'm grounded in reality
Well, guess what?
We need to walk in theirreality.
We need to understand that thisis real for them.
So don't argue with them andtry to live where they are at
that particular time will reallyhelp as well.
But that was surprising.
I was like holy cow.
(09:14):
I am not prepared for aliens.
Speaker 1 (09:17):
Yeah, it's interesting.
My mom was nonverbal aboutprobably three years into her
diagnosis.
She was very she was just 53when she was diagnosed and she
would talk to things, butbecause she didn't speak English
that was my experience was alot of gibberish that you could
tell she was trying to tellsomebody something or trying to
(09:40):
experience something, but youcouldn't understand her.
So that probably helped me notwant to correct because there
was really nothing I could dobut you couldn't understand her.
So that probably helped me notwant to correct because there
was really nothing I could doand I didn't know what she was
seeing or what she thought shewas seeing.
But it is such a differentexperience because we are so
used to just being in a commonreality with people and so this
(10:02):
is right and that makes themwrong because we can't join them
.
But we can participate and,like you said, the anxiety and
the stress that comes fromtrying to correct or trying to
make it not be it can be sodifficult.
So handling that piece isdefinitely challenging.
(10:22):
Did you find medications werehelpful or was that something
that you tried?
Speaker 2 (10:26):
Yeah, yes, I laugh because oh my goodness, there's
one that I would never giveanyone.
I don't want to.
It was just her adversereaction to it.
But my mother-in-law washallucinating a lot too, and so
I was in the kitchen cookingsupper and all of a sudden she's
laughing hysterically, whichcan be scary when there's no one
(10:46):
else at home.
It's you and her alone.
And all of a sudden she's justlaughing and laughing.
Speaker 3 (10:55):
And so and she's like oh, he's so cute, he's so cute,
look at his tricks.
Speaker 2 (10:59):
And she says Debbie, come look at his tricks, and so
I walk in there and I'm thinkingI don't know what to be
prepared for his tricks.
There's no one here, what arewe looking at?
But I noticed that she'slooking down.
So okay, it's shorter.
So I look down.
He's the cutest little pup, hedoes the best tricks.
And I'm like, yes, he is, he'sadorable, you know.
(11:20):
And so then I had to laugh withhim myself because he's the
perfect pet.
You don't have to feed him,water him, take him out, nothing
exactly but she, just she wouldjust love it.
Speaker 3 (11:29):
She's like he's doing tricks again and I'm like, oh,
that's great, that's awesome andhe made her happy, which is
which is huge and I didn't havea dog at the time.
Speaker 2 (11:38):
But hey, that's okay, yeah, that's great.
As long as you're happy, it'sall good.
And you talked about thenon-verbal, so I want to.
I'd like to put in there realquick a real happy moment that I
have with my mom when she wasnonverbal.
It was towards the end and shewas in this facility.
As I told you, I had to put herinto that just broke my heart.
But she was great and it helpedour relationship too, because I
(12:02):
got to be the daughter again.
I didn't have to be the meanperson who was making her take
her medicine, take a bath, eather food, do the things she
didn't want to do.
I got to just be the fun oneand I got to bring her
strawberry shakes and play musicand dance with her, and so it
was awesome.
And so when she was nonverbal, Ithought my challenge was to
(12:24):
bring joy to her life every dayin some way or another.
Bring some moment of joy.
And so I knelt down in front ofher because it's real important
to get eye level with them.
Don't stand up above them andexpect to talk to them.
They can't see you.
So kneel down, wait until youget eye level, wait until they
see you and you know when theyconnect.
And they see you.
(12:44):
You see that little glimmer.
And so then I'd puff out mycheeks and stick out my tongue,
twist my head, make all kinds ofcrazy faces at her, and then
she would make the crazy faceback at me and we both just
laughed hysterically.
It was awesome.
I never expected her to do that, but it was so much fun.
And so we'd laugh and we'd havethat connection, even though we
(13:05):
didn't speak.
She couldn't speak at all, butshe still had joy in her life.
Speaker 1 (13:10):
Yeah, definitely.
My mom loved to listen to Elvisand Nat King Cole and she would
sing not necessarily words,sometimes words, but she would
sing along with them, clap herhands with them.
She just really engaged in thatand lived about eight years not
being able to tell us what sheneeded, learn to read that body
language and learn how tocommunicate in the way that she
(13:31):
could.
And, like you said, I think thejoy is the thing that always
will stick by me is just that,no matter where in the journey,
she was still very joyful and Iwas so thankful for that that we
were able to help maintain thatand help to keep her stress
level down so she could enjoywhere she was.
So share with us and I knowthere are so many times Beth
(13:55):
share with us, one time thatstands out to you that God
really showed up for you in yourcaregiving.
Speaker 2 (14:00):
I think.
Well, one time that I reallyremember I was really tired
again because dad had passedaway.
He'd been a couple of years now.
So I had my mom and mymother-in-law and I would take
the two of them to the grocerystore and to the beauty salon
and different places and stuff,which was a very stressful event
.
You know, because they're bothprone to wonder and you're
(14:23):
trying to keep like hurtingchats and you're going come back
, come back.
You know, no-transcript hadn'tbeen able to say a sentence in a
(14:55):
long, long time, at least sixmonths and she said your dad is
proud of you.
And I just started crying.
And it was just.
And she did too, and I said,and so I asked her, I said do
you, do you talk to dad?
And she nodded, yes, and I saidwell, tell him, I love him.
And it just, oh wow, sopowerful, so powerful Because we
(15:17):
just we don't know what's goingon in the spiritual realm and
we don't know about all thethings going on around us.
But that total moment of clarityjust blessed my heart in an
immense way, and God knew that Ineeded to be uplifted, that I
had been beaten down, because,see, when we focus on the
problem, we get beaten down.
When we focus on the solution,jesus Christ, then we're
(15:40):
uplifted.
When we focus on the positive,you can train your brain to look
for positive, and somethingthat I really encourage
caregivers to do is to writedown three things every day at
the end of the day, three thingsthat you are thankful for or
that were funny, that happenedto you that day, and after a few
days, your brain will developnew neural pathways and it knows
(16:04):
that, hey, you're going to askme this.
So I need to start looking forthings that happened throughout
the day that were good, thatwere joyous, that were.
It can be little tiny, it canbe big, it can be like what I
just shared with you, butwhatever it is, because when you
focus on the positive, set yourmind on things above, then your
life is going to go so mucheasier and it just it's huge.
(16:26):
It makes such a huge difference.
Speaker 1 (16:29):
Yeah, I love that scripture because it does remind
us of something that is, Idon't know easy is the right
thing to do, but simple.
It's simple to do, focusing onthe things that I'm not.
But yet we make it hard or wemiss it, and it can have such an
important impact, and I do lovethose moments of clarity.
Like you said, God always givesus those times that are just to
(16:51):
really hold on to.
I will never forget my dad,probably three or four days
before he passed away.
You know, it's one of thosethings when you're caring for
somebody with dementia, youdon't know when the last time
will be.
Speaker 2 (17:06):
Right.
Speaker 1 (17:07):
So when was the last time you heard them say your
name?
Well, the last time, you don'tknow it was the last time you
heard them say your name.
Well, the last time, you don'tknow.
It was the last time, right,right, you don't even
necessarily think about it untilit's been a really long time,
maybe even two years or more,since my dad had said my name.
Now he would call me babe andhe would, you know we would
interact.
(17:27):
He was still talking, but likesaying Raina and getting my
attention, and about five daysbefore he passed away I was
standing at his bedside andsomeone else had come in the
room and I kind of moved to theside and I was out of his
peripheral vision.
He engaged with them and thenhe kind of looked around where
did Raina go?
And I was like it was just soamazing because for so long he
(17:51):
didn't remember my mom, hedidn't remember he had kids, he
didn't remember all of thosethings.
But just that blessing of allof these years of caring for him
he does still know in his heartof hearts who I am.
And so I just love it.
Whenever we have those glimmers, that can just be something we
hold on to forever.
Speaker 2 (18:09):
Exactly.
It's so amazing and it is sucha blessing for God and things
don't happen by accident.
When my mom was passing, Ithought we were in the nursing
home.
I thought somebody had theirradio turned up loud because we
were hearing old time gospelmusic which she loves and we all
enjoyed it and she was in andout you know, pretty much not
(18:30):
really with us at that point intime.
Her eyes were open but therewas no recognition and things
going on and she kind of had alittle tiny smile come up on the
sides of her face and we werehearing this music and so we all
just started singing along withthe music because we knew the
words and it was a wonderfultime of fellowship for us.
And then I went to go out andsay something to the nurse and
(18:53):
so I opened her door and therewas a quartet out there.
It was live.
They were singing out in themain area which was just outside
mom's room, and I thought,thank you God what a blessing.
That's just so fantastic,because this was just like a day
before she passed away and shehadn't spoken anything that made
sense in about a week Nothing,you know a few garbled words
(19:16):
that we couldn't make out.
And that day she said, and shehadn't known how many kids she'd
had for years years several and.
But that day after we weresinging and had all the music
going and all this kind of stuff, she said I love my four kids.
And those are the last wordsshe said.
I'm like, wow, that's a mom,that's a mother who loves her
(19:40):
children.
We were all there with her.
It was a fantastic time, but Ijust thank God for that time of
worship to send her on her way.
And my mother-in-law had thesame thing.
She was here in our house andwe had family all gathered
around.
So I brought in all thesefolding chairs and different
chairs and we had them sittingall around the bedroom and we
(20:01):
all sang Christian songs andthings the same way.
But and she just she laid there.
She was comatose for about 10days, but they can still hear.
And so then we finally decidedyou know what, let's take a
break, let's all go out and eat.
And so her youngest daughterstayed with her and the rest of
us went out to eat and shepassed away.
(20:22):
So I think she was waiting.
She might have been saying inher mind get out of here so I
can go.
Speaker 1 (20:29):
Well, she might have been enjoying having her around
so much.
Yeah, Didn't want to do it, shehad her concert.
Yes, exactly.
So tell us what's one thingthat helps you to live content,
love well and care withoutregrets.
Speaker 2 (20:43):
Oh, what is one thing it's very hard to narrow things
down it is prayer.
I don't know how anyone getsthrough caregiving without God.
I just don't.
I don't understand it, becausehe brings me such comfort.
His scriptures bring me comfort.
The word, the songs, spiritualsongs sometimes it's the old
(21:07):
hymns, sometimes it's worshipmusic, whatever it is, but it
brings me peace and contentmentand joy in my heart.
And if you're depressed andyou're sad and you're having a
rough day, put on some Christianmusic.
It's very hard to staydepressed when you're singing
praises to the King.
And so I think music, music andprayer, see, that's two.
(21:30):
I already went to music andprayer and worshiping God and
his word.
Speaker 1 (21:34):
I think music can be so helpful.
I think sometimes, when we getinto a place where we're feeling
stressed and we're feelingoverwhelmed, we forget to look
to something as simple as justturning praise music on.
Yes, it's right there and it'seasy to do, but we don't.
That's your strength.
Don't shut it off.
Go to it, yeah.
So, as we come to an end here,what would be one thing that you
(21:59):
would want to share with thosethat are caregiving, either
early in their journey orhalfway through?
What would be an encouragementthat you would offer them?
Speaker 2 (22:06):
I would say let go of perfectionism.
Don't try to keep thingsperfect.
They're not going to be and it.
Don't try to keep thingsperfect.
They're not going to be andit's okay.
And don't be so hard onyourself, because we do.
We tend to.
I know I compared myself tothese workers who did so great
with mom until I realized theywork eight hours and they go
(22:26):
home and they have rest and theyhave a break.
I am on 24-7.
A whole lot harder to maintainthat 24-7.
And God never called us toperfectionism.
That's not biblical.
He never said you should beperfect.
We should do the best that wecan but, relying on his strength
(22:46):
, we can always do better.
Speaker 1 (22:48):
Yeah, definitely.
It's so important to really bethinking about and realizing
what's realistic, and we do.
Oftentimes, people are lookingfrom the outside, thinking I
don't know how you're doing allthat you're doing anyway, and
but we're looking at it, lookingat all the things that we
didn't get done.
So it is really important tolet go of that.
So tell us, debbie, how can westay in touch with with you what
(23:13):
would be one way for myaudience to find your books and
be able to learn more about allthe things that you're doing you
can visit my website,thepurplevinecom, because on
there you'll find a lot ofarticles with information and
help and support.
Speaker 2 (23:28):
You'll find free resources Many of my books are
listed there, so that's the bestplace to go and there's also
the weekly email that I send out.
I don't send it every day,because caregivers do not have
time to read an email every day,but that would be a great way
to reach out to me, and fromthere they can schedule a Zoom
(23:51):
consultation, and I would reallyencourage them to do that.
The first one I do for free,just so that you can see if
that's something that fits yourneeds.
I can help them find creativesolutions, things to make your
life safer and easier, becausethat is what I'm all about.
That's the mission that God hasput on my heart.
After going through this threetimes of caregiving, I got my
(24:13):
certifications after two lovedones passed away and learned
more things that would have beensuper helpful had I known back
then.
Yeah, so I can save you a lotof time and a lot of heartache,
deb at thepurplevinecom.
Speaker 1 (24:28):
All right, very good.
Thank you so much for beinghere today.
It's been great to be able tovisit with you and just share a
little bit of what your journeyslook like and your wisdom.
Speaker 2 (24:38):
Thank you, I appreciate the opportunity to
share.
Speaker 1 (24:41):
Thank you, listeners, for joining us today for
Stories of Hope with Debbie.
A Season of Caring podcast hasbeen created to share stories of
hope for living content, lovingwell and caring without regrets
.
If you have legal, financial ormedical questions, be sure to
consult your local professionalsand take heart in your season
of caring.
Welcome.
This is Raina Nises, your hostof a Season of Caring podcast,
where we share stories of hopefor family caregivers breaking
through the busyness andloneliness of caregiving to see
God even in the midst of thisseason.
Today, I'm excited to introduceyou to Debbie Compton.
Debbie is a passionatethree-time primary caregiver for
her parents with Alzheimer's,parkinson's and vascular
(00:23):
dementia.
As a speaker, she brings hopeand laughter to caregivers in
dementia issues, easing thestress of her audience.
Since 2017, debbie has been acommunity educator for the
Alzheimer's Association.
She has authored 10 books,including Caregiving how to Hold
On While Letting Go, where sheshares her hard-earned knowledge
, perspective and faith.
(00:43):
Debbie's latest book, theCaregiver's Advocate A Complete
Guide to Support and Resources,is a collaboration between 21
authors in four countries.
It's an internationalbestseller and an Amazon number
one new release.
Debbie is the founder of thePurple Vine, where she supports
caregivers through one-on-oneZoom consultations, a blog,
(01:04):
online trainings and a weeklynewsletter.
Welcome, debbie, I'm so glad tohave you here today.
Thank you for having me.
Raina, it's good to be here.
So I know you have threedifferent stories, but introduce
us a little bit to those thatyou've cared for and share what
those seasons look like.
Speaker 2 (01:18):
Sure, well, I was in business, business leadership,
traveling coast to coast, lovinglife, had my plan in place.
I had been with the company for15 years and I planned on
retiring there.
My mom had already beendiagnosed with vascular dementia
, but she was very highfunctioning and I didn't know
enough to realize that there wasa train coming on that journey.
(01:39):
So then my dad developedParkinson's and started
requiring more care.
The big warning sign there wasthat when I was out on the coast
which I actually live inOklahoma, right in the center of
the US, so I was on the EastCoast when dad accidentally took
mom's pills and had to berushed to the hospital.
He was nearly comatose.
He had low blood pressure, shehad high.
(02:02):
Could have been fatal rightthere, but praise God it was not
.
Another time mom passed out atthe daily living center, had to
(02:22):
be rushed to the hospital and Iwas on the other coast.
So the third straw my mothermental clarity to walk next door
to the neighbor's house thatshe'd known for over 40 years.
Instead she got in her car andsat and waited until her
daughter got home from work,possibly seven, eight hours, and
only by the grace of God shesurvived.
That was my wake up call.
That was the realization thatsomething had to be done.
(02:44):
They were not safe any longer,so I became a three-time primary
caregiver for the three of them.
So I started studying a lot,learning everything that I could
about their diseases.
They're all different forms ofdementia, right, so they have
some similarities, but thenthere are differences as well
the diseases.
So I studied and read andresearched and tried to do the
(03:06):
best that I could, learned somuch on the journey.
And then when my mother-in-lawa few years later now we had her
living with us at that point intime, when she was passing in
our home I brought hospice inmuch too late because I didn't
know any better.
Had them come in, they saw someof the things that my husband
and I had created to make lifesafer.
And the little hospice nursesaid where did you read about
(03:29):
that?
And I just laughed.
I'm like I didn't read about itanywhere.
This is called survival.
And so she said the sentencethat changed my life.
She said other caregivers needto know about this.
It would really help them.
And it hit me.
I was just.
I was stunned because I thoughtI'm the last one to the party.
(03:50):
Everybody else has this figuredout, you know.
Everybody else knows whatthey're doing.
It's just me fumbling aroundout here in the dark and I was
so wrong.
But that's how I felt.
So I went to bed, I prayed aboutit, went to sleep, woke up the
next morning and knew this iswhy I went through this, so that
I can help other people,because I can relate to them
(04:11):
whether they keep their lovedone at home, like we did with my
dad in his home, because hewould not move in with us very
stubborn man and so we had tocome up with a way to honor that
and still take care of him.
We moved my mother-in-law inwith us.
She passed here in my home andthen my mom I had to put in a
(04:32):
memory care facility in themiddle of COVID and it broke my
heart.
I felt like I let her down.
This is horrible, but sheoutweighed me by 35 pounds and
she was passing out and it wasnot a sustainable situation.
So I cried and cried and cried,put her in the memory care and
then I realized that was myperception that I was letting
her down.
She had a great time.
(04:53):
She was surrounded by friends,new people, activities to do.
She had a great time.
It was just me that was feelingall this guilt and all this
upset and everything else thatyou can imagine.
So I founded the Purple Vine,as you mentioned, and I just try
to help caregivers in any waythat I can, predominantly
(05:17):
through speeches and one-on-oneZoom consultations.
Speaker 1 (05:20):
It is that journey that all of us are on.
There are a lot more resourcesthan there were when we started
our caregiving with my mom, backin 86.
But definitely within even justthe last 10 years, I think
there's been significantly morebooks published and more things
available to help families.
But I do think that one of thereasons why I love support
(05:43):
groups is because living it andtalking to people that have
lived it I think can make such apowerful impact on your
caregiving season and thosefeelings, like you said, that
the guilt or the struggles thatyou're having.
Others can express that as well, and it really does help us to
get a different perspective andto be able to see things from a
(06:04):
different mindset.
So share with us a favoritecaregiving story?
Speaker 2 (06:11):
Oh goodness, A favorite one or a?
I'll tell you about a dramaticone.
How's that it was.
Oh, this was just.
This was so dramatic.
But I was scrubbing the toiletfor the third time that day.
My mother-in-law couldn't findit, couldn't see it.
I didn't know the things that Iknow now that you can do to
(06:31):
actually make that much better.
So I was scrubbing the floorfor the third time that day.
I'd been up about five nightsin a row with very, very little
sleep and I was exhaustedMentally, physically,
emotionally.
I was just worn out.
And so I'm crying while I'mcleaning this and I'm thinking I
don't know how much longer Ican do this.
I don't know what I'm going todo.
(06:53):
And then the scriptures came tome Greater is he that is in me
than he that is in the world.
I can do all things, even scrubthis bathroom floor for the
third time, through Christ, whogives me strength, and his
mercies are new every morning.
Great is thy faithfulness.
That's Limitations 323.
That is one that all caregiversneed to remember.
(07:15):
The others are great too.
They're wonderful, they're veryhelpful.
But Limitations really spoke tome because, as a caregiver, you
have to, when you go to bed,put that day to rest.
It's gone.
You can't change anything thatyou did wrong, anything that you
wish you would have donedifferently.
A word spoken harshly, youcannot change it, so let it go
(07:38):
and just accept the forgivenessand try to do better and start
each day fresh.
Each day is a new day.
That is my biggest tip forsurviving caregiving and
thriving in caregiving yeah,definitely.
Speaker 1 (07:53):
And I love that his word.
It applies and we really canrun to it and find those truths
that can make such a bigdifference.
So you just said how you had tokind of make it up as you went.
What would you say would be themost surprising thing about
caregiving for you?
Speaker 2 (08:11):
Hallucinations.
I had never been around anyonewho had hallucinations before.
And then dad is suddenlytelling me about aliens
tunneling into the house and I'mlike what?
And so I researched andresearched and all I could find
was don't argue with them.
Okay, well, that's a goodstarting point, because you
(08:31):
don't want to argue with them.
You should never argue withsomeone with dementia.
You're not going to win.
And not only that they see,hear, smell and believe what
they are experiencing.
So who are you to tell themthat it's not true and that it's
not real?
So sometimes and this is a hardone for caregivers, and I don't
mean to stomp on toes, but wecan be a little bit arrogant,
(08:53):
thinking that, hey, I knowreality, I'm grounded in reality
Well, guess what?
We need to walk in theirreality.
We need to understand that thisis real for them.
So don't argue with them andtry to live where they are at
that particular time will reallyhelp as well.
But that was surprising.
I was like holy cow.
(09:14):
I am not prepared for aliens.
Speaker 1 (09:17):
Yeah, it's interesting.
My mom was nonverbal aboutprobably three years into her
diagnosis.
She was very she was just 53when she was diagnosed and she
would talk to things, butbecause she didn't speak English
that was my experience was alot of gibberish that you could
tell she was trying to tellsomebody something or trying to
(09:40):
experience something, but youcouldn't understand her.
So that probably helped me notwant to correct because there
was really nothing I could dobut you couldn't understand her.
So that probably helped me notwant to correct because there
was really nothing I could doand I didn't know what she was
seeing or what she thought shewas seeing.
But it is such a differentexperience because we are so
used to just being in a commonreality with people and so this
(10:02):
is right and that makes themwrong because we can't join them
.
But we can participate and,like you said, the anxiety and
the stress that comes fromtrying to correct or trying to
make it not be it can be sodifficult.
So handling that piece isdefinitely challenging.
(10:22):
Did you find medications werehelpful or was that something
that you tried?
Speaker 2 (10:26):
Yeah, yes, I laugh because oh my goodness, there's
one that I would never giveanyone.
I don't want to.
It was just her adversereaction to it.
But my mother-in-law washallucinating a lot too, and so
I was in the kitchen cookingsupper and all of a sudden she's
laughing hysterically, whichcan be scary when there's no one
(10:46):
else at home.
It's you and her alone.
And all of a sudden she's justlaughing and laughing.
Speaker 3 (10:55):
And so and she's like oh, he's so cute, he's so cute,
look at his tricks.
Speaker 2 (10:59):
And she says Debbie, come look at his tricks, and so
I walk in there and I'm thinkingI don't know what to be
prepared for his tricks.
There's no one here, what arewe looking at?
But I noticed that she'slooking down.
So okay, it's shorter.
So I look down.
He's the cutest little pup, hedoes the best tricks.
And I'm like, yes, he is, he'sadorable, you know.
(11:20):
And so then I had to laugh withhim myself because he's the
perfect pet.
You don't have to feed him,water him, take him out, nothing
exactly but she, just she wouldjust love it.
Speaker 3 (11:29):
She's like he's doing tricks again and I'm like, oh,
that's great, that's awesome andhe made her happy, which is
which is huge and I didn't havea dog at the time.
Speaker 2 (11:38):
But hey, that's okay, yeah, that's great.
As long as you're happy, it'sall good.
And you talked about thenon-verbal, so I want to.
I'd like to put in there realquick a real happy moment that I
have with my mom when she wasnonverbal.
It was towards the end and shewas in this facility.
As I told you, I had to put herinto that just broke my heart.
But she was great and it helpedour relationship too, because I
(12:02):
got to be the daughter again.
I didn't have to be the meanperson who was making her take
her medicine, take a bath, eather food, do the things she
didn't want to do.
I got to just be the fun oneand I got to bring her
strawberry shakes and play musicand dance with her, and so it
was awesome.
And so when she was nonverbal, Ithought my challenge was to
(12:24):
bring joy to her life every dayin some way or another.
Bring some moment of joy.
And so I knelt down in front ofher because it's real important
to get eye level with them.
Don't stand up above them andexpect to talk to them.
They can't see you.
So kneel down, wait until youget eye level, wait until they
see you and you know when theyconnect.
And they see you.
(12:44):
You see that little glimmer.
And so then I'd puff out mycheeks and stick out my tongue,
twist my head, make all kinds ofcrazy faces at her, and then
she would make the crazy faceback at me and we both just
laughed hysterically.
It was awesome.
I never expected her to do that, but it was so much fun.
And so we'd laugh and we'd havethat connection, even though we
(13:05):
didn't speak.
She couldn't speak at all, butshe still had joy in her life.
Speaker 1 (13:10):
Yeah, definitely.
My mom loved to listen to Elvisand Nat King Cole and she would
sing not necessarily words,sometimes words, but she would
sing along with them, clap herhands with them.
She just really engaged in thatand lived about eight years not
being able to tell us what sheneeded, learn to read that body
language and learn how tocommunicate in the way that she
(13:31):
could.
And, like you said, I think thejoy is the thing that always
will stick by me is just that,no matter where in the journey,
she was still very joyful and Iwas so thankful for that that we
were able to help maintain thatand help to keep her stress
level down so she could enjoywhere she was.
So share with us and I knowthere are so many times Beth
(13:55):
share with us, one time thatstands out to you that God
really showed up for you in yourcaregiving.
Speaker 2 (14:00):
I think.
Well, one time that I reallyremember I was really tired
again because dad had passedaway.
He'd been a couple of years now.
So I had my mom and mymother-in-law and I would take
the two of them to the grocerystore and to the beauty salon
and different places and stuff,which was a very stressful event
.
You know, because they're bothprone to wonder and you're
(14:23):
trying to keep like hurtingchats and you're going come back
, come back.
You know, no-transcript hadn'tbeen able to say a sentence in a
(14:55):
long, long time, at least sixmonths and she said your dad is
proud of you.
And I just started crying.
And it was just.
And she did too, and I said,and so I asked her, I said do
you, do you talk to dad?
And she nodded, yes, and I saidwell, tell him, I love him.
And it just, oh wow, sopowerful, so powerful Because we
(15:17):
just we don't know what's goingon in the spiritual realm and
we don't know about all thethings going on around us.
But that total moment of clarityjust blessed my heart in an
immense way, and God knew that Ineeded to be uplifted, that I
had been beaten down, because,see, when we focus on the
problem, we get beaten down.
When we focus on the solution,jesus Christ, then we're
(15:40):
uplifted.
When we focus on the positive,you can train your brain to look
for positive, and somethingthat I really encourage
caregivers to do is to writedown three things every day at
the end of the day, three thingsthat you are thankful for or
that were funny, that happenedto you that day, and after a few
days, your brain will developnew neural pathways and it knows
(16:04):
that, hey, you're going to askme this.
So I need to start looking forthings that happened throughout
the day that were good, thatwere joyous, that were.
It can be little tiny, it canbe big, it can be like what I
just shared with you, butwhatever it is, because when you
focus on the positive, set yourmind on things above, then your
life is going to go so mucheasier and it just it's huge.
(16:26):
It makes such a huge difference.
Speaker 1 (16:29):
Yeah, I love that scripture because it does remind
us of something that is, Idon't know easy is the right
thing to do, but simple.
It's simple to do, focusing onthe things that I'm not.
But yet we make it hard or wemiss it, and it can have such an
important impact, and I do lovethose moments of clarity.
Like you said, God always givesus those times that are just to
(16:51):
really hold on to.
I will never forget my dad,probably three or four days
before he passed away.
You know, it's one of thosethings when you're caring for
somebody with dementia, youdon't know when the last time
will be.
Speaker 2 (17:06):
Right.
Speaker 1 (17:07):
So when was the last time you heard them say your
name?
Well, the last time, you don'tknow it was the last time you
heard them say your name.
Well, the last time, you don'tknow.
It was the last time, right,right, you don't even
necessarily think about it untilit's been a really long time,
maybe even two years or more,since my dad had said my name.
Now he would call me babe andhe would, you know we would
interact.
(17:27):
He was still talking, but likesaying Raina and getting my
attention, and about five daysbefore he passed away I was
standing at his bedside andsomeone else had come in the
room and I kind of moved to theside and I was out of his
peripheral vision.
He engaged with them and thenhe kind of looked around where
did Raina go?
And I was like it was just soamazing because for so long he
(17:51):
didn't remember my mom, hedidn't remember he had kids, he
didn't remember all of thosethings.
But just that blessing of allof these years of caring for him
he does still know in his heartof hearts who I am.
And so I just love it.
Whenever we have those glimmers, that can just be something we
hold on to forever.
Speaker 2 (18:09):
Exactly.
It's so amazing and it is sucha blessing for God and things
don't happen by accident.
When my mom was passing, Ithought we were in the nursing
home.
I thought somebody had theirradio turned up loud because we
were hearing old time gospelmusic which she loves and we all
enjoyed it and she was in andout you know, pretty much not
(18:30):
really with us at that point intime.
Her eyes were open but therewas no recognition and things
going on and she kind of had alittle tiny smile come up on the
sides of her face and we werehearing this music and so we all
just started singing along withthe music because we knew the
words and it was a wonderfultime of fellowship for us.
And then I went to go out andsay something to the nurse and
(18:53):
so I opened her door and therewas a quartet out there.
It was live.
They were singing out in themain area which was just outside
mom's room, and I thought,thank you God what a blessing.
That's just so fantastic,because this was just like a day
before she passed away and shehadn't spoken anything that made
sense in about a week Nothing,you know a few garbled words
(19:16):
that we couldn't make out.
And that day she said, and shehadn't known how many kids she'd
had for years years several and.
But that day after we weresinging and had all the music
going and all this kind of stuff, she said I love my four kids.
And those are the last wordsshe said.
I'm like, wow, that's a mom,that's a mother who loves her
(19:40):
children.
We were all there with her.
It was a fantastic time, but Ijust thank God for that time of
worship to send her on her way.
And my mother-in-law had thesame thing.
She was here in our house andwe had family all gathered
around.
So I brought in all thesefolding chairs and different
chairs and we had them sittingall around the bedroom and we
(20:01):
all sang Christian songs andthings the same way.
But and she just she laid there.
She was comatose for about 10days, but they can still hear.
And so then we finally decidedyou know what, let's take a
break, let's all go out and eat.
And so her youngest daughterstayed with her and the rest of
us went out to eat and shepassed away.
(20:22):
So I think she was waiting.
She might have been saying inher mind get out of here so I
can go.
Speaker 1 (20:29):
Well, she might have been enjoying having her around
so much.
Yeah, Didn't want to do it, shehad her concert.
Yes, exactly.
So tell us what's one thingthat helps you to live content,
love well and care withoutregrets.
Speaker 2 (20:43):
Oh, what is one thing it's very hard to narrow things
down it is prayer.
I don't know how anyone getsthrough caregiving without God.
I just don't.
I don't understand it, becausehe brings me such comfort.
His scriptures bring me comfort.
The word, the songs, spiritualsongs sometimes it's the old
(21:07):
hymns, sometimes it's worshipmusic, whatever it is, but it
brings me peace and contentmentand joy in my heart.
And if you're depressed andyou're sad and you're having a
rough day, put on some Christianmusic.
It's very hard to staydepressed when you're singing
praises to the King.
And so I think music, music andprayer, see, that's two.
(21:30):
I already went to music andprayer and worshiping God and
his word.
Speaker 1 (21:34):
I think music can be so helpful.
I think sometimes, when we getinto a place where we're feeling
stressed and we're feelingoverwhelmed, we forget to look
to something as simple as justturning praise music on.
Yes, it's right there and it'seasy to do, but we don't.
That's your strength.
Don't shut it off.
Go to it, yeah.
So, as we come to an end here,what would be one thing that you
(21:59):
would want to share with thosethat are caregiving, either
early in their journey orhalfway through?
What would be an encouragementthat you would offer them?
Speaker 2 (22:06):
I would say let go of perfectionism.
Don't try to keep thingsperfect.
They're not going to be and it.
Don't try to keep thingsperfect.
They're not going to be andit's okay.
And don't be so hard onyourself, because we do.
We tend to.
I know I compared myself tothese workers who did so great
with mom until I realized theywork eight hours and they go
(22:26):
home and they have rest and theyhave a break.
I am on 24-7.
A whole lot harder to maintainthat 24-7.
And God never called us toperfectionism.
That's not biblical.
He never said you should beperfect.
We should do the best that wecan but, relying on his strength
(22:46):
, we can always do better.
Speaker 1 (22:48):
Yeah, definitely.
It's so important to really bethinking about and realizing
what's realistic, and we do.
Oftentimes, people are lookingfrom the outside, thinking I
don't know how you're doing allthat you're doing anyway, and
but we're looking at it, lookingat all the things that we
didn't get done.
So it is really important tolet go of that.
So tell us, debbie, how can westay in touch with with you what
(23:13):
would be one way for myaudience to find your books and
be able to learn more about allthe things that you're doing you
can visit my website,thepurplevinecom, because on
there you'll find a lot ofarticles with information and
help and support.
Speaker 2 (23:28):
You'll find free resources Many of my books are
listed there, so that's the bestplace to go and there's also
the weekly email that I send out.
I don't send it every day,because caregivers do not have
time to read an email every day,but that would be a great way
to reach out to me, and fromthere they can schedule a Zoom
(23:51):
consultation, and I would reallyencourage them to do that.
The first one I do for free,just so that you can see if
that's something that fits yourneeds.
I can help them find creativesolutions, things to make your
life safer and easier, becausethat is what I'm all about.
That's the mission that God hasput on my heart.
After going through this threetimes of caregiving, I got my
(24:13):
certifications after two lovedones passed away and learned
more things that would have beensuper helpful had I known back
then.
Yeah, so I can save you a lotof time and a lot of heartache,
deb at thepurplevinecom.
Speaker 1 (24:28):
All right, very good.
Thank you so much for beinghere today.
It's been great to be able tovisit with you and just share a
little bit of what your journeyslook like and your wisdom.
Speaker 2 (24:38):
Thank you, I appreciate the opportunity to
share.
Speaker 1 (24:41):
Thank you, listeners, for joining us today for
Stories of Hope with Debbie.
A Season of Caring podcast hasbeen created to share stories of
hope for living content, lovingwell and caring without regrets
.
If you have legal, financial ormedical questions, be sure to
consult your local professionalsand take heart in your season
of caring.
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