March 13, 2025 • 29 mins
The conversation takes a surprising turn as they detail a series of household disasters that would test anyone's resilience. A massive 90-foot tree fell onto their house during the night, damaging their electrical system during one of the coldest nights of the season. Combined with plumbing failures affecting both their kitchen and laundry facilities, they find themselves navigating a perfect storm of home maintenance crises while simultaneously managing LBD symptoms. Their matter-of-fact approach to these challenges reveals the extraordinary resilience required when facing dementia alongside life's ordinary problems.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:11):
welcome back podcast family yes, welcome back folks
okay, fingers crossed, curry.
What would?
We should really put together ablooper with me trying to push
the right buttons as usual.
Anyway, just another quickshout out to everyone for your
(00:34):
continued support and patiencewith us.
Speaker 2 (00:38):
Yeah, so thank you all for being patient and
supportive to us while we'restill trying to get caught up
here.
Speaker 1 (00:45):
Yeah, I'm just going to tell everybody that Curry
looks really tired today, soyou're probably going to sleep
when we're done this.
Speaker 2 (00:54):
Most likely.
Speaker 1 (00:55):
Yeah, and we always lately have been asking you to
just share the episode with yourfamily members.
If you're listening, becauseyou have a louis body or you
have someone with louis body, um, it seems like people find us
and that's where they start.
So if that's you, there's somany amazing because we just
(01:17):
played the three-part hospice,uh, replayed it because it was
it's been a big topic in oursupport groups so we were like
we need to play that againbecause that was a pretty
powerful one.
But anyway, we just want tothank everybody again for your
patience.
Like Curry and I just mentionedand yeah, you all know Louie,
(01:43):
louie, and Mother Nature seemsto be taking a hold of you,
curry, sure does.
Speaker 2 (01:48):
Yeah, also, I want to remind you all that if you'd
like to be a guest and shareyour experience with others,
just contact Linda Zappula ormyself through Facebook
Messenger or through our email,which is louiebodyrollercoaster
at gmailcom.
We'd love to have you on thepodcast, or through our email,
which is louiebodyrollercoasterat gmailcom.
We'd love to have you on thepodcast.
And we do have a bunch ofpeople ready.
(02:12):
Just been little small thingskeeping us from getting it
started so far.
But yeah, we do have othersready.
Speaker 1 (02:18):
We're going to share about that and, as always, we
post the Patreon and GoFundMelinks at the bottom of the
episode notes and they're underthe I think it's events or
announcements.
Nate page at the top of the twoFacebook pages.
And please remember, Cara and Ido not use any of the funds.
The funds are there to helppeople, to help with the podcast
(02:44):
cost, but also to help people.
So we really appreciateeverybody who has become a
supporter.
Speaker 2 (02:54):
Yeah, and as a reminder folks, we're not giving
medical advice.
We're just sharing our open andhonest feelings and thoughts as
we live with Lewy Body Dementia.
So now I want to do somethingthat we always do.
I want to give a shout-out tosome of our good supporters.
You're all good supporters, butI just like to give out
shout-outs to some, especiallyeach week.
(03:15):
This week we've got LoriBirdu-Craig, ann and Mark, ann
Marie and James I'm sorry, annMarie and James Boogie, carol
McNeely and all of our othersupporters.
We appreciate the heck out ofy'all.
Speaker 1 (03:31):
Yeah, I'm just jumping with Erica G Skye,
sharon Hammond, ellen Gordy Ithink it is Linda Minyard, eben
Stewart Ray and Rose BradPatricia.
We just really appreciateeverybody's support and, like
Curry said, everybody thatsupported us from the beginning.
Speaker 2 (03:54):
You bet, okay, folks.
Speaker 1 (04:01):
It's going to be a short one today, I think,
because we.
It's going to be a short onetoday, I think, because we
usually, when we don't have aguest on, that usually means
that I want to talk.
I want you to share how you'refeeling, Curry.
So what's been going on withyou, with your health?
Your hallucinations are back.
Speaker 2 (04:19):
Yeah, hallucinations are back, not real strong.
No, they're mild, mildhallucinations, thank God.
But I had a lot of sorenessmuscle pain and joint pain both,
and doctors are trying to getthat under control.
(04:42):
I just upped my fentanyl patchthis week to a stronger strength
, so maybe that'll help.
But, yeah, I'm sorry.
Speaker 1 (04:54):
The patch when they upped it to the next dose.
Have you felt any relief fromthat?
Speaker 2 (05:01):
Yeah, I think I felt a little bit.
We just did it two days ago.
Okay, I do think it's reallyhelping this time.
Speaker 1 (05:12):
Yeah, do you think it's making you tired?
Speaker 2 (05:16):
I don't know, Something is yeah.
Like I said, I went to bed lastnight and I didn't get up until
, according to my watch, 15until 1.
But my watch was about an hourbehind, so it was actually 15
until 2.
Speaker 1 (05:31):
Yeah, I was going to find the message that you texted
me.
Can you believe?
I just woke up and I'm like,yes, I can believe it.
So you go from having days withno sleep and then you haven't
really had a lot of long.
Have you had long periods whereyou slept a lot?
(05:54):
Not in a while I used to sojust the fentanyl patches, all
they've changed with you yes,ma'am well, I think stress might
be affecting you too, becausewe've had a lot going on here
yeah, tell them what mothernature has been knocking on your
door with yeah, we got a treeout back, that's.
Speaker 2 (06:17):
It's actually three, uh three parts of the tree, huge
pieces of tree, and the firstone came down and wiped out part
of our chain link fence.
And then, about a week later,the second one came down and
(06:37):
knocked out more of our chainlink fence, and this tree is
like 90 foot tall folks.
And this tree is like 90 foottall folks.
So the other day Tuesday Ibelieve, it was Linda and I were
in there getting ready to shutdown and go to bed.
It was 1030.
And all of a sudden our houseshook and we couldn't figure out
(06:59):
what happened.
So we went outside and lookedand the third part of that tree
fell and it landed on our houseand took out our meter, our
electric meter, our meter loopand everything, just laid it all
right there on the ground.
Geez and uh.
Luckily, somehow our electricstayed on, though, oh.
(07:20):
So we called the electriccompany to have them come put it
back up or do what they could,because I knew they wouldn't put
it back up.
It was going to be up to us,but anyway, he was going to
leave it on and go ahead and putit back up for us.
You know out there at 2 o'clockin the morning Until he found
(07:41):
out this couple of the wires hadbeen chafed a little bit and he
said man, I hate to do it, butI got to shut you all off and
that was one of the coldestnights we've had here lately.
Couldn't happen on a nice day.
Speaker 1 (07:56):
That heater you have on the porch?
Is that it plugged intoelectricity or is that propane
or something it's?
Speaker 2 (08:02):
plugged into electric .
Speaker 1 (08:03):
Yeah, yeah, electricity or is that propane
or something that's plugged intoelectric.
Yeah, yeah, that's a bummer,because you could have camped on
your front porch with that.
Oh yeah, it was propane.
Speaker 2 (08:13):
Yeah, yeah.
So anyway, we got all the treesdown.
All the trees are down.
Now it's just a matter of ourson-in-law and grandson getting
over here and cutting them allup for us.
Speaker 1 (08:26):
Yeah, that's crazy oh it was.
Yeah, I mean, we had awindstorm here last month-ish
and it knocked out half of ourpower and it was the half that
worked the heater Right.
(08:48):
And I literally live on acorner and I'm telling you I'm
going to have to videotape.
Right now it's still windy.
You open my screen door and itjust pulls it out of your hand.
So that's broken.
I'm like I don't even know howto fix that.
Speaker 2 (09:02):
Right.
Speaker 1 (09:03):
Because the wind is just.
It's been a really, reallywindy year so far in our state
and you guys have just beengetting pummeled.
Speaker 2 (09:12):
Yeah.
Speaker 1 (09:13):
Cold and the rain and the weather, Well, spring's
coming, they claim.
Speaker 2 (09:16):
Oh yeah, it's just right around the corner.
Speaker 1 (09:18):
Yeah, it's coming.
Yeah, just right around thecorner.
Yeah, that's coming.
Yeah, so you've just been.
Speaker 2 (09:26):
So when all this happens, there was something in
plumbing or something you had todo too right our our drain line
for our kitchen sink and ourwashing machine is the pot
collapsed and it's it's underconcrete, so we're got to figure
out another way to go aboutre-plumbing it, and we just
haven't got around to it yetyeah, I just want to.
(09:54):
I've been going through thislike I thought, when we got
older, life was supposed to be alittle bit easier we thought so
too, but the strange thing is,uh, our washing machine had quit
on us the same night that, uh,oh my gosh, what am I trying to
(10:17):
say?
Anyway, our washing machinestopped up on us I mean, quit on
us the same night that thesewer line backed up, oh geez.
So what I was doing?
I had to hook the water linesand run them inside the washing
machine and just leave themdripping.
Well, linda was doing ourlaundry at our daughter's house
(10:42):
and then bringing the clothesback home to dry them.
Well then, our dryer went out,oh Lord.
So we still got a broke-downdryer and a broke-down washing
machine in our laundry room thatwe can't do anything with until
we get that sewer line fixed.
Speaker 1 (10:57):
Right, it's just like this domino thing.
Speaker 2 (11:02):
Yeah, it just is.
Speaker 1 (11:03):
It's just part of it um, just, people don't buy an
old house.
I want to say we built ourhouse 25 years ago.
Um, you know, we had anarchitect draw it up, and this
is like you do one thing andyou're like, just, for instance,
my brother said, I'm gonna,I'll paint your first floor, but
(11:24):
you know, you're going to haveto go up your steps.
And I'm like, why?
And then, if you go up thesteps, you're going to have to
do the hallway up there.
And I'm like, oh, my God Right,it's just never, never ending.
And we had so many issues withmy brother pretty much said that
jim would have gutted the houseand started over with electric.
(11:46):
Yes, we, when we pulled, wewere just putting up new
cabinets.
So when we put, pull them down,the sheet rock came with it,
and so it was cabinet, sheetrock, stone wall, not a licking
ounce of insulation, which makessense why my house is so cold.
And he was running a.
He was running.
(12:07):
What he did was just put on onnew wiring.
There was a junction box, asteel, a metal one, behind the
wall, with wires that weren'teven capped and they were live.
We were like we don't even know.
So that I mean we hadinspectors coming on and the
house is much safer.
But he went to find this oneline to the switch for the
(12:28):
outside and he followed it up inthe ceiling and he just didn't
even touch it hard and it camethrough the ceiling.
So when they ran that theceiling was already up.
When they ran that the ceilingwas already up, so they just
(12:50):
poked a little hole, put it upthere, and then they stuffed it
with tissue and painted it.
It's just nonstop stuff likethat.
Speaker 2 (12:57):
That's a funny thing.
You talk about no insulation inyour house.
We've we found out.
None of our exterior walls haveinsulation in them, neither
does our attic.
Speaker 1 (13:09):
So they're going to come here march 26th and
insulate everything yeah, you'relucky that's the same here,
like I literally can see thenails where the in the room,
like when I go look up in theattic yeah, I don't know, it's,
it's just, it's just been.
I just want it to be done now.
Speaker 2 (13:27):
We're just you know it's been a lot.
We're just kind of taking it instride and doing what we can
when we can.
Speaker 1 (13:34):
Yep, yeah, it's hard not to let it get to you, yeah,
when it's so many things and Iknow I talked to you about
getting tradesmen to come in andgive estimates once they
realize you don't have a manwith you, right they?
(13:58):
Take advantage of you try toanyway one guy wanted $67,000
for my kitchen and they takeadvantage of you.
Try to yeah.
Anyway, one guy wanted $67,000for my kitchen and plus flooring
, plus appliances.
Speaker 2 (14:10):
And I'm like oh.
Speaker 1 (14:12):
Because in Jersey Jim built me my dream house.
I had a 12-foot island in thatkitchen Maybe doing that one
over with 67, but I said I don'teven have 12 foot in my kitchen
right now.
And then two out of three toldme the wall between my kitchen
and dining room was not loadbearing, and it clearly is.
But I will say one thing.
(14:33):
I don't know if I shared thiswith you when we pulled the
cabinets off first of all, thehouse was built in 1954 and
that's the year Jim was born.
And then when my brother pulledthe cabinets off the wall
they're all sitting in thekitchen.
And I walked into the kitchenand I just froze because on the
back of every cabinet it saidJimmy.
(14:54):
And I said did you write why?
Like I know what to do?
And he's like I guess the guynamed Jimmyimmy put these in.
So that was like freaky um.
So I'm trying to be patient, um, and get this place where I
kind of feel like it's home,because I'm still my rv feels
(15:16):
more like home than anywhere.
But I'm gonna.
I'm getting ready to sell it.
So if anybody's looking for anRV, send me a message.
It's an 80.
Speaker 2 (15:24):
There you go.
Speaker 1 (15:25):
What is it?
80.
Oh gosh, it's a 2018 WinnebagoSunstar 29 VE.
Totally redone inside, butyou've been in it.
Speaker 2 (15:35):
Yeah, it's a nice motorhome.
Speaker 1 (15:37):
Yeah, it's very homey and cozy.
So that's catching you up withme and Curry what's going on.
I am glad you're getting somesleep, yeah me too.
Speaker 2 (15:51):
I was getting very little sleep the last month or
two, right, and so it kind ofirritated me today when I slept
so late.
Speaker 1 (16:04):
You're not used to it .
Speaker 2 (16:06):
I had some things I wanted to get done and now I put
them off another day.
Speaker 1 (16:12):
Yeah, it's always tomorrow.
Yeah, that's, you know, it'salways tomorrow.
Yeah.
So we just thought we'd jump onand you know, update where we
are, both of us with everything.
But I also wanted we thought itwas important to talk about
caregivers this week.
It was a pretty big topic thatwe discussed this past Friday in
(16:38):
Zoom, because a gal came inwho's caring for her mom and
she's new into it and it's justI'm going to say you hear from
every as a caregiver, you hearfrom everyone.
You have to take care ofyourself, because if you don't
take care of yourself, you can'ttake care of your loved one.
(16:58):
And I just I know if youhaven't watched the news, is it
Gene Hackman?
Is that who passed away?
Speaker 2 (17:08):
Yes.
Speaker 1 (17:09):
And they just found out that his wife passed away
first, like 10 days before him.
Right, she was probablycleaning up rat poop or
something.
It was some disease that had todo with that.
Speaker 2 (17:20):
Spoon to virus.
Speaker 1 (17:22):
Yeah, and I didn't know he had dementia.
I don't know if they I thinkthey said he had Alzheimer's.
I'm not sure, but they said hewas pretty advanced, so he
probably didn't even know.
Speaker 2 (17:33):
Didn't even know she was dead.
Speaker 1 (17:35):
Yeah, missing, and the poor couple of the pups were
still in their cages and theywere lost.
But it was amazing that whenthe girl came in this last week
how the caregivers just eventhose with Lewy body that were
(17:57):
in the group just really wrappedlove around that girl and loved
her.
Stress that you need to taketime for yourself as a caregiver
, I will say, easier said thandone.
Sure, I, if I like I had to goto Kansas to do that.
(18:21):
The filming, the guilt I had ofleaving Jim behind, it was
really hard.
So I had trouble with theself-care I mean I would take,
take walks like that was my goout and, you know, catch my
breath, but um, I'd say, if youcan, for sure I think.
(18:42):
I think it would have beeneasier for me if I was still in
new jersey to give myselfself-care because I moved myself
to a place I only knew, my sonand his wife, but Carla Pryor,
who's in the documentary whichthey connected with AARP to show
(19:07):
it this past week, and somepeople couldn't get in because
they weren't expecting 2,500people more than that to try to
watch the film at the same time,which is pretty amazing.
So what does Linda do forherself?
Your?
Speaker 2 (19:24):
wife Linda.
Wow, she really doesn't Right.
When she's sick she still getsup and goes.
You know, she just takes it allin and just keeps going.
Really I'll tell you somethingthat did happen to us, talking
(19:55):
about the caregiver.
Friday morning hospice was hereand I got my shower and then
the nurse was here and she dideverything she does, and then I
mean they couldn't have been outof the door three seconds.
Speaker 1 (20:10):
Can I say it?
Yeah.
And his wife said to him let meask you something.
Yeah, I wrote it down.
What's that mean, when she saysthat?
Speaker 2 (20:20):
Usually that means I'm in trouble.
When she says well, let me askyou a question, normally I'm in
trouble, and that's the firstthing that hit me was oh my God,
what have I done?
So anyway, she said do youremember anything about 3
o'clock last night going out tothe van?
I said no, I don't why are youtalking about?
(20:40):
She said well, you went outsideand were smoking, and then next
thing, I knew you came in andyou're looking all through all
your pockets and everything.
And she said I asked you whatyou were doing.
You said looking for the vankeys.
And she said she jumped up andsaid van keys, what are you
(21:02):
doing with the van keys?
I said I don't know.
I don't have any idea why I wasout there and I didn't If she
hadn't told me I was outside.
You didn't even know you wereoutside, didn't know I was.
Yeah, you know.
So she's hiding the van keysfrom me now with the chocolate
and candy, just to keep fromanything.
Actually, what if you'd gottenin the car, the van and decided
(21:24):
to go to the door or somethingyou know?
Speaker 1 (21:27):
yeah, but have you done that before, where you've
done something and you have nomemory of it at all?
Speaker 2 (21:33):
Oh yeah, I've done stuff like that, but nothing
that's major.
Has taken the car keys with me.
Speaker 1 (21:39):
Yeah, because you haven't really driven it in a
long time.
Speaker 2 (21:41):
I haven't driven since 2016.
Speaker 1 (21:43):
Right right, Maybe you were in the middle of a
dream or something.
Speaker 2 (21:47):
Yeah, I don't know, but it sure was weird.
Speaker 1 (21:50):
Well, it's good that she does that.
So that's good.
And it's also good that youshared for those listening, and
we've done many episodes wherewe talked about once you're
diagnosed well, I don't know ifthe word is beg you to stop
driving or just because youdon't know what Louie's going to
(22:13):
do yeah, that it's just saferif you stop driving.
Yeah, and when Jim was maybe ayear or two into it which I
don't know why I did this Ishould have just lent.
I just sort of just askedsomebody to hold all of his
(22:34):
power tools because I gave themto his drummer friend and to
sell or just give to friends.
Now Sarah and I need powertools and we're buying all of
them, but I got rid of thembecause if I ran to the
supermarket I didn't want, Ididn't want the worry of coming
(22:56):
home and he's using a hand sawor something.
I mean, my older neighbor to theright of us had the beginning
of dementia too, and he was like85.
And I ran to the supermarketand came home and him and Jim
were standing on the top of aladder trying to cut a branch
that was five feet over theirheads.
It was like great.
I'm like what are you guysdoing?
Let me call somebody.
(23:18):
But I totally understand.
Just like with you, no matterhow tired you've been, you just
want to fix things yourself andyou don't want to have to burden
anybody else.
Speaker 2 (23:29):
Yeah, where I was going, I have no idea.
Speaker 1 (23:33):
Well, it's good that you put the keys away, and if
you're listening and you'reworried about your loved one
driving with Louie Boddy, that'sa good idea is to put the keys
somewhere.
Speaker 2 (23:47):
Yeah, I had the garage keys and the van keys.
Who knows what I was up to?
Yeah, I had the garage keys andthe van keys.
Who knows what I was up to?
Speaker 1 (23:55):
Yeah, probably no good.
Speaker 2 (23:57):
Yeah, I'm sure.
Speaker 1 (24:01):
So what would you like Linda to do for herself?
Speaker 2 (24:05):
Oh wow, she really needs a day off.
She needs a day or two awayfrom me.
She really does.
But then that's on my righthand saying that and my left
hand is saying no, she's happyjust doing what she is, what
she's doing now.
She is and she is.
(24:28):
I don't think she would take aday off if they offered it to
her well, you would needsomebody to stay with you for
sure which the hospice said theywould do that yeah but she
would have to go somewhere withmaybe your granddaughter or
something like that.
Speaker 1 (24:45):
So hospice would come to the house 24-7.
Yeah, they said, anytime Lindaneeds to go somewhere, they'll
come and watch me.
Speaker 2 (24:49):
So, hospice would come to the house 24-7?
.
Speaker 1 (24:50):
Yeah, yeah, wow.
Speaker 2 (24:51):
They said anytime Linda needs to go somewhere,
they'll come and watch me whileshe's gone.
Speaker 1 (24:56):
But did they say how long though?
Speaker 2 (24:59):
No, they did say at one time that I could have five
days in a rehab facility to giveLinda some time away from me.
Speaker 1 (25:12):
See, I know your wife , I would not have done that
with Jim either.
Speaker 2 (25:18):
But as far as the stay, they've got volunteers at
the hospice that will just comeand stay as long as you need
them.
Yeah.
Speaker 1 (25:27):
Wow, and for her to run the supermarket or something
?
Yeah, because we know you, ifyou listen, several years ago,
at that time where you trippedover your dog.
Speaker 2 (25:36):
Oh yeah.
Speaker 1 (25:38):
Because you do think you're not supposed to do.
Speaker 2 (25:39):
Yeah, I was catching up with me.
Speaker 1 (25:42):
Yeah, and if you're really tired or you're having
what happened the other nightwith the car keys, yeah, with a
stranger in the house, thatprobably isn't.
Oh yeah, I was the same waywith Jim and I knew taking a
break would have helped me.
But for me, the guilt of takingthe break, yeah, when we went,
(26:03):
I went to Kansas for the filmingand I was like ugh, you know
just, it was hard, but Manny waswith him.
Like ugh, you know just, it washard but Manny was with him.
So I knew he was, you know,with somebody he really liked
and being taken care of.
It's just a thing, you know.
But if you can take a break, Iwould recommend it Definitely,
(26:32):
especially with you.
When she needs to go to thesupermarket, have somebody sit
with you so she can go and takeher time there, yeah.
Speaker 2 (26:44):
I tell you, anyone who doesn't have hospice, you
need to check into it.
Speaker 1 (26:49):
It's available for anyone who has louis and this is
coming from a man who's like Idon't need that, yeah, but now
that you have it, because youdon't realize until you get it
you know, and remember hospice.
That's why we played that threepart episode about hospice.
It doesn't mean you're you'reon your last couple days of life
(27:13):
, right, you know?
I mean you're getting so muchhelp, yeah, and if you're not to
the point where you need all ofthat hospice care, palliative
care is the step before hospiceand I really wish I would have
done that when I went to NewJersey and gotten into a hospice
.
And I really wish I would havedone that when I went to New
Jersey and gotten into a hospiceagency, because I was like
(27:39):
behind the eight ball trying todo it, you know, and then I knew
what services they weresupposed to provide, which they.
You got to go back and listento that episode because that was
a little nuts but I'm happy tohear you're having a great
experience with them.
Speaker 2 (27:56):
Yeah, couldn't ask for a better group, yeah.
Speaker 1 (27:59):
Couldn't ask for a better group.
So we just wanted to do a quickone today, because you know
Curry's been busy trying to fixhis house, and me too actually,
and I know you're really tiredbecause you look really tired.
Hopefully this will put youback to sleep.
I hope so.
Anyway, that's what we wantedto talk about today, just to
(28:23):
catch everybody up and thenwe're hoping to get back on
track.
Speaker 2 (28:28):
Yeah, I hope that's all the time we have for this
week, remember?
You can email us withsuggestions on what you'd like
to discuss on a future episode,or you can ask any questions you
have, and we'll do our best toget you the right answer.
Speaker 1 (28:43):
Yep, and remember, we post the link to the podcast in
both the Lewy BodyRollercoaster Facebook page and
our Journey with Lewy Body page,and if you're interested in
helping as a volunteer or anadvocate, please send us your
email at lewybodyrollercoasterat gmailcom.
The more people who reach out,the more people we can help.
Speaker 2 (29:06):
Yes, and if you want to learn how you can be a
supporter of the podcast, justsee the episode notes at the
bottom of the link there, and wepost all the information there
of how you can help support thepodcast.
Yep, and we really appreciateyou.
Speaker 1 (29:23):
Sure do.
Speaker 2 (29:27):
So thanks again for joining us.
Speaker 1 (29:29):
Yep Until next week.
This is Linda.
Speaker 2 (29:32):
And Curry signing off .
welcome back podcast family yes, welcome back folks
okay, fingers crossed, curry.
What would?
We should really put together ablooper with me trying to push
the right buttons as usual.
Anyway, just another quickshout out to everyone for your
(00:34):
continued support and patiencewith us.
Speaker 2 (00:38):
Yeah, so thank you all for being patient and
supportive to us while we'restill trying to get caught up
here.
Speaker 1 (00:45):
Yeah, I'm just going to tell everybody that Curry
looks really tired today, soyou're probably going to sleep
when we're done this.
Speaker 2 (00:54):
Most likely.
Speaker 1 (00:55):
Yeah, and we always lately have been asking you to
just share the episode with yourfamily members.
If you're listening, becauseyou have a louis body or you
have someone with louis body, um, it seems like people find us
and that's where they start.
So if that's you, there's somany amazing because we just
(01:17):
played the three-part hospice,uh, replayed it because it was
it's been a big topic in oursupport groups so we were like
we need to play that againbecause that was a pretty
powerful one.
But anyway, we just want tothank everybody again for your
patience.
Like Curry and I just mentionedand yeah, you all know Louie,
(01:43):
louie, and Mother Nature seemsto be taking a hold of you,
curry, sure does.
Speaker 2 (01:48):
Yeah, also, I want to remind you all that if you'd
like to be a guest and shareyour experience with others,
just contact Linda Zappula ormyself through Facebook
Messenger or through our email,which is louiebodyrollercoaster
at gmailcom.
We'd love to have you on thepodcast, or through our email,
which is louiebodyrollercoasterat gmailcom.
We'd love to have you on thepodcast.
And we do have a bunch ofpeople ready.
(02:12):
Just been little small thingskeeping us from getting it
started so far.
But yeah, we do have othersready.
Speaker 1 (02:18):
We're going to share about that and, as always, we
post the Patreon and GoFundMelinks at the bottom of the
episode notes and they're underthe I think it's events or
announcements.
Nate page at the top of the twoFacebook pages.
And please remember, Cara and Ido not use any of the funds.
The funds are there to helppeople, to help with the podcast
(02:44):
cost, but also to help people.
So we really appreciateeverybody who has become a
supporter.
Speaker 2 (02:54):
Yeah, and as a reminder folks, we're not giving
medical advice.
We're just sharing our open andhonest feelings and thoughts as
we live with Lewy Body Dementia.
So now I want to do somethingthat we always do.
I want to give a shout-out tosome of our good supporters.
You're all good supporters, butI just like to give out
shout-outs to some, especiallyeach week.
(03:15):
This week we've got LoriBirdu-Craig, ann and Mark, ann
Marie and James I'm sorry, annMarie and James Boogie, carol
McNeely and all of our othersupporters.
We appreciate the heck out ofy'all.
Speaker 1 (03:31):
Yeah, I'm just jumping with Erica G Skye,
sharon Hammond, ellen Gordy Ithink it is Linda Minyard, eben
Stewart Ray and Rose BradPatricia.
We just really appreciateeverybody's support and, like
Curry said, everybody thatsupported us from the beginning.
Speaker 2 (03:54):
You bet, okay, folks.
Speaker 1 (04:01):
It's going to be a short one today, I think,
because we.
It's going to be a short onetoday, I think, because we
usually, when we don't have aguest on, that usually means
that I want to talk.
I want you to share how you'refeeling, Curry.
So what's been going on withyou, with your health?
Your hallucinations are back.
Speaker 2 (04:19):
Yeah, hallucinations are back, not real strong.
No, they're mild, mildhallucinations, thank God.
But I had a lot of sorenessmuscle pain and joint pain both,
and doctors are trying to getthat under control.
(04:42):
I just upped my fentanyl patchthis week to a stronger strength
, so maybe that'll help.
But, yeah, I'm sorry.
Speaker 1 (04:54):
The patch when they upped it to the next dose.
Have you felt any relief fromthat?
Speaker 2 (05:01):
Yeah, I think I felt a little bit.
We just did it two days ago.
Okay, I do think it's reallyhelping this time.
Speaker 1 (05:12):
Yeah, do you think it's making you tired?
Speaker 2 (05:16):
I don't know, Something is yeah.
Like I said, I went to bed lastnight and I didn't get up until
, according to my watch, 15until 1.
But my watch was about an hourbehind, so it was actually 15
until 2.
Speaker 1 (05:31):
Yeah, I was going to find the message that you texted
me.
Can you believe?
I just woke up and I'm like,yes, I can believe it.
So you go from having days withno sleep and then you haven't
really had a lot of long.
Have you had long periods whereyou slept a lot?
(05:54):
Not in a while I used to sojust the fentanyl patches, all
they've changed with you yes,ma'am well, I think stress might
be affecting you too, becausewe've had a lot going on here
yeah, tell them what mothernature has been knocking on your
door with yeah, we got a treeout back, that's.
Speaker 2 (06:17):
It's actually three, uh three parts of the tree, huge
pieces of tree, and the firstone came down and wiped out part
of our chain link fence.
And then, about a week later,the second one came down and
(06:37):
knocked out more of our chainlink fence, and this tree is
like 90 foot tall folks.
And this tree is like 90 foottall folks.
So the other day Tuesday Ibelieve, it was Linda and I were
in there getting ready to shutdown and go to bed.
It was 1030.
And all of a sudden our houseshook and we couldn't figure out
(06:59):
what happened.
So we went outside and lookedand the third part of that tree
fell and it landed on our houseand took out our meter, our
electric meter, our meter loopand everything, just laid it all
right there on the ground.
Geez and uh.
Luckily, somehow our electricstayed on, though, oh.
(07:20):
So we called the electriccompany to have them come put it
back up or do what they could,because I knew they wouldn't put
it back up.
It was going to be up to us,but anyway, he was going to
leave it on and go ahead and putit back up for us.
You know out there at 2 o'clockin the morning Until he found
(07:41):
out this couple of the wires hadbeen chafed a little bit and he
said man, I hate to do it, butI got to shut you all off and
that was one of the coldestnights we've had here lately.
Couldn't happen on a nice day.
Speaker 1 (07:56):
That heater you have on the porch?
Is that it plugged intoelectricity or is that propane
or something it's?
Speaker 2 (08:02):
plugged into electric .
Speaker 1 (08:03):
Yeah, yeah, electricity or is that propane
or something that's plugged intoelectric.
Yeah, yeah, that's a bummer,because you could have camped on
your front porch with that.
Oh yeah, it was propane.
Speaker 2 (08:13):
Yeah, yeah.
So anyway, we got all the treesdown.
All the trees are down.
Now it's just a matter of ourson-in-law and grandson getting
over here and cutting them allup for us.
Speaker 1 (08:26):
Yeah, that's crazy oh it was.
Yeah, I mean, we had awindstorm here last month-ish
and it knocked out half of ourpower and it was the half that
worked the heater Right.
(08:48):
And I literally live on acorner and I'm telling you I'm
going to have to videotape.
Right now it's still windy.
You open my screen door and itjust pulls it out of your hand.
So that's broken.
I'm like I don't even know howto fix that.
Speaker 2 (09:02):
Right.
Speaker 1 (09:03):
Because the wind is just.
It's been a really, reallywindy year so far in our state
and you guys have just beengetting pummeled.
Speaker 2 (09:12):
Yeah.
Speaker 1 (09:13):
Cold and the rain and the weather, Well, spring's
coming, they claim.
Speaker 2 (09:16):
Oh yeah, it's just right around the corner.
Speaker 1 (09:18):
Yeah, it's coming.
Yeah, just right around thecorner.
Yeah, that's coming.
Yeah, so you've just been.
Speaker 2 (09:26):
So when all this happens, there was something in
plumbing or something you had todo too right our our drain line
for our kitchen sink and ourwashing machine is the pot
collapsed and it's it's underconcrete, so we're got to figure
out another way to go aboutre-plumbing it, and we just
haven't got around to it yetyeah, I just want to.
(09:54):
I've been going through thislike I thought, when we got
older, life was supposed to be alittle bit easier we thought so
too, but the strange thing is,uh, our washing machine had quit
on us the same night that, uh,oh my gosh, what am I trying to
(10:17):
say?
Anyway, our washing machinestopped up on us I mean, quit on
us the same night that thesewer line backed up, oh geez.
So what I was doing?
I had to hook the water linesand run them inside the washing
machine and just leave themdripping.
Well, linda was doing ourlaundry at our daughter's house
(10:42):
and then bringing the clothesback home to dry them.
Well then, our dryer went out,oh Lord.
So we still got a broke-downdryer and a broke-down washing
machine in our laundry room thatwe can't do anything with until
we get that sewer line fixed.
Speaker 1 (10:57):
Right, it's just like this domino thing.
Speaker 2 (11:02):
Yeah, it just is.
Speaker 1 (11:03):
It's just part of it um, just, people don't buy an
old house.
I want to say we built ourhouse 25 years ago.
Um, you know, we had anarchitect draw it up, and this
is like you do one thing andyou're like, just, for instance,
my brother said, I'm gonna,I'll paint your first floor, but
(11:24):
you know, you're going to haveto go up your steps.
And I'm like, why?
And then, if you go up thesteps, you're going to have to
do the hallway up there.
And I'm like, oh, my God Right,it's just never, never ending.
And we had so many issues withmy brother pretty much said that
jim would have gutted the houseand started over with electric.
(11:46):
Yes, we, when we pulled, wewere just putting up new
cabinets.
So when we put, pull them down,the sheet rock came with it,
and so it was cabinet, sheetrock, stone wall, not a licking
ounce of insulation, which makessense why my house is so cold.
And he was running a.
He was running.
(12:07):
What he did was just put on onnew wiring.
There was a junction box, asteel, a metal one, behind the
wall, with wires that weren'teven capped and they were live.
We were like we don't even know.
So that I mean we hadinspectors coming on and the
house is much safer.
But he went to find this oneline to the switch for the
(12:28):
outside and he followed it up inthe ceiling and he just didn't
even touch it hard and it camethrough the ceiling.
So when they ran that theceiling was already up.
When they ran that the ceilingwas already up, so they just
(12:50):
poked a little hole, put it upthere, and then they stuffed it
with tissue and painted it.
It's just nonstop stuff likethat.
Speaker 2 (12:57):
That's a funny thing.
You talk about no insulation inyour house.
We've we found out.
None of our exterior walls haveinsulation in them, neither
does our attic.
Speaker 1 (13:09):
So they're going to come here march 26th and
insulate everything yeah, you'relucky that's the same here,
like I literally can see thenails where the in the room,
like when I go look up in theattic yeah, I don't know, it's,
it's just, it's just been.
I just want it to be done now.
Speaker 2 (13:27):
We're just you know it's been a lot.
We're just kind of taking it instride and doing what we can
when we can.
Speaker 1 (13:34):
Yep, yeah, it's hard not to let it get to you, yeah,
when it's so many things and Iknow I talked to you about
getting tradesmen to come in andgive estimates once they
realize you don't have a manwith you, right they?
(13:58):
Take advantage of you try toanyway one guy wanted $67,000
for my kitchen and they takeadvantage of you.
Try to yeah.
Anyway, one guy wanted $67,000for my kitchen and plus flooring
, plus appliances.
Speaker 2 (14:10):
And I'm like oh.
Speaker 1 (14:12):
Because in Jersey Jim built me my dream house.
I had a 12-foot island in thatkitchen Maybe doing that one
over with 67, but I said I don'teven have 12 foot in my kitchen
right now.
And then two out of three toldme the wall between my kitchen
and dining room was not loadbearing, and it clearly is.
But I will say one thing.
(14:33):
I don't know if I shared thiswith you when we pulled the
cabinets off first of all, thehouse was built in 1954 and
that's the year Jim was born.
And then when my brother pulledthe cabinets off the wall
they're all sitting in thekitchen.
And I walked into the kitchenand I just froze because on the
back of every cabinet it saidJimmy.
(14:54):
And I said did you write why?
Like I know what to do?
And he's like I guess the guynamed Jimmyimmy put these in.
So that was like freaky um.
So I'm trying to be patient, um, and get this place where I
kind of feel like it's home,because I'm still my rv feels
(15:16):
more like home than anywhere.
But I'm gonna.
I'm getting ready to sell it.
So if anybody's looking for anRV, send me a message.
It's an 80.
Speaker 2 (15:24):
There you go.
Speaker 1 (15:25):
What is it?
80.
Oh gosh, it's a 2018 WinnebagoSunstar 29 VE.
Totally redone inside, butyou've been in it.
Speaker 2 (15:35):
Yeah, it's a nice motorhome.
Speaker 1 (15:37):
Yeah, it's very homey and cozy.
So that's catching you up withme and Curry what's going on.
I am glad you're getting somesleep, yeah me too.
Speaker 2 (15:51):
I was getting very little sleep the last month or
two, right, and so it kind ofirritated me today when I slept
so late.
Speaker 1 (16:04):
You're not used to it .
Speaker 2 (16:06):
I had some things I wanted to get done and now I put
them off another day.
Speaker 1 (16:12):
Yeah, it's always tomorrow.
Yeah, that's, you know, it'salways tomorrow.
Yeah.
So we just thought we'd jump onand you know, update where we
are, both of us with everything.
But I also wanted we thought itwas important to talk about
caregivers this week.
It was a pretty big topic thatwe discussed this past Friday in
(16:38):
Zoom, because a gal came inwho's caring for her mom and
she's new into it and it's justI'm going to say you hear from
every as a caregiver, you hearfrom everyone.
You have to take care ofyourself, because if you don't
take care of yourself, you can'ttake care of your loved one.
(16:58):
And I just I know if youhaven't watched the news, is it
Gene Hackman?
Is that who passed away?
Speaker 2 (17:08):
Yes.
Speaker 1 (17:09):
And they just found out that his wife passed away
first, like 10 days before him.
Right, she was probablycleaning up rat poop or
something.
It was some disease that had todo with that.
Speaker 2 (17:20):
Spoon to virus.
Speaker 1 (17:22):
Yeah, and I didn't know he had dementia.
I don't know if they I thinkthey said he had Alzheimer's.
I'm not sure, but they said hewas pretty advanced, so he
probably didn't even know.
Speaker 2 (17:33):
Didn't even know she was dead.
Speaker 1 (17:35):
Yeah, missing, and the poor couple of the pups were
still in their cages and theywere lost.
But it was amazing that whenthe girl came in this last week
how the caregivers just eventhose with Lewy body that were
(17:57):
in the group just really wrappedlove around that girl and loved
her.
Stress that you need to taketime for yourself as a caregiver
, I will say, easier said thandone.
Sure, I, if I like I had to goto Kansas to do that.
(18:21):
The filming, the guilt I had ofleaving Jim behind, it was
really hard.
So I had trouble with theself-care I mean I would take,
take walks like that was my goout and, you know, catch my
breath, but um, I'd say, if youcan, for sure I think.
(18:42):
I think it would have beeneasier for me if I was still in
new jersey to give myselfself-care because I moved myself
to a place I only knew, my sonand his wife, but Carla Pryor,
who's in the documentary whichthey connected with AARP to show
(19:07):
it this past week, and somepeople couldn't get in because
they weren't expecting 2,500people more than that to try to
watch the film at the same time,which is pretty amazing.
So what does Linda do forherself?
Your?
Speaker 2 (19:24):
wife Linda.
Wow, she really doesn't Right.
When she's sick she still getsup and goes.
You know, she just takes it allin and just keeps going.
Really I'll tell you somethingthat did happen to us, talking
(19:55):
about the caregiver.
Friday morning hospice was hereand I got my shower and then
the nurse was here and she dideverything she does, and then I
mean they couldn't have been outof the door three seconds.
Speaker 1 (20:10):
Can I say it?
Yeah.
And his wife said to him let meask you something.
Yeah, I wrote it down.
What's that mean, when she saysthat?
Speaker 2 (20:20):
Usually that means I'm in trouble.
When she says well, let me askyou a question, normally I'm in
trouble, and that's the firstthing that hit me was oh my God,
what have I done?
So anyway, she said do youremember anything about 3
o'clock last night going out tothe van?
I said no, I don't why are youtalking about?
(20:40):
She said well, you went outsideand were smoking, and then next
thing, I knew you came in andyou're looking all through all
your pockets and everything.
And she said I asked you whatyou were doing.
You said looking for the vankeys.
And she said she jumped up andsaid van keys, what are you
(21:02):
doing with the van keys?
I said I don't know.
I don't have any idea why I wasout there and I didn't If she
hadn't told me I was outside.
You didn't even know you wereoutside, didn't know I was.
Yeah, you know.
So she's hiding the van keysfrom me now with the chocolate
and candy, just to keep fromanything.
Actually, what if you'd gottenin the car, the van and decided
(21:24):
to go to the door or somethingyou know?
Speaker 1 (21:27):
yeah, but have you done that before, where you've
done something and you have nomemory of it at all?
Speaker 2 (21:33):
Oh yeah, I've done stuff like that, but nothing
that's major.
Has taken the car keys with me.
Speaker 1 (21:39):
Yeah, because you haven't really driven it in a
long time.
Speaker 2 (21:41):
I haven't driven since 2016.
Speaker 1 (21:43):
Right right, Maybe you were in the middle of a
dream or something.
Speaker 2 (21:47):
Yeah, I don't know, but it sure was weird.
Speaker 1 (21:50):
Well, it's good that she does that.
So that's good.
And it's also good that youshared for those listening, and
we've done many episodes wherewe talked about once you're
diagnosed well, I don't know ifthe word is beg you to stop
driving or just because youdon't know what Louie's going to
(22:13):
do yeah, that it's just saferif you stop driving.
Yeah, and when Jim was maybe ayear or two into it which I
don't know why I did this Ishould have just lent.
I just sort of just askedsomebody to hold all of his
(22:34):
power tools because I gave themto his drummer friend and to
sell or just give to friends.
Now Sarah and I need powertools and we're buying all of
them, but I got rid of thembecause if I ran to the
supermarket I didn't want, Ididn't want the worry of coming
(22:56):
home and he's using a hand sawor something.
I mean, my older neighbor to theright of us had the beginning
of dementia too, and he was like85.
And I ran to the supermarketand came home and him and Jim
were standing on the top of aladder trying to cut a branch
that was five feet over theirheads.
It was like great.
I'm like what are you guysdoing?
Let me call somebody.
(23:18):
But I totally understand.
Just like with you, no matterhow tired you've been, you just
want to fix things yourself andyou don't want to have to burden
anybody else.
Speaker 2 (23:29):
Yeah, where I was going, I have no idea.
Speaker 1 (23:33):
Well, it's good that you put the keys away, and if
you're listening and you'reworried about your loved one
driving with Louie Boddy, that'sa good idea is to put the keys
somewhere.
Speaker 2 (23:47):
Yeah, I had the garage keys and the van keys.
Who knows what I was up to?
Yeah, I had the garage keys andthe van keys.
Who knows what I was up to?
Speaker 1 (23:55):
Yeah, probably no good.
Speaker 2 (23:57):
Yeah, I'm sure.
Speaker 1 (24:01):
So what would you like Linda to do for herself?
Speaker 2 (24:05):
Oh wow, she really needs a day off.
She needs a day or two awayfrom me.
She really does.
But then that's on my righthand saying that and my left
hand is saying no, she's happyjust doing what she is, what
she's doing now.
She is and she is.
(24:28):
I don't think she would take aday off if they offered it to
her well, you would needsomebody to stay with you for
sure which the hospice said theywould do that yeah but she
would have to go somewhere withmaybe your granddaughter or
something like that.
Speaker 1 (24:45):
So hospice would come to the house 24-7.
Yeah, they said, anytime Lindaneeds to go somewhere, they'll
come and watch me.
Speaker 2 (24:49):
So, hospice would come to the house 24-7?
.
Speaker 1 (24:50):
Yeah, yeah, wow.
Speaker 2 (24:51):
They said anytime Linda needs to go somewhere,
they'll come and watch me whileshe's gone.
Speaker 1 (24:56):
But did they say how long though?
Speaker 2 (24:59):
No, they did say at one time that I could have five
days in a rehab facility to giveLinda some time away from me.
Speaker 1 (25:12):
See, I know your wife , I would not have done that
with Jim either.
Speaker 2 (25:18):
But as far as the stay, they've got volunteers at
the hospice that will just comeand stay as long as you need
them.
Yeah.
Speaker 1 (25:27):
Wow, and for her to run the supermarket or something
?
Yeah, because we know you, ifyou listen, several years ago,
at that time where you trippedover your dog.
Speaker 2 (25:36):
Oh yeah.
Speaker 1 (25:38):
Because you do think you're not supposed to do.
Speaker 2 (25:39):
Yeah, I was catching up with me.
Speaker 1 (25:42):
Yeah, and if you're really tired or you're having
what happened the other nightwith the car keys, yeah, with a
stranger in the house, thatprobably isn't.
Oh yeah, I was the same waywith Jim and I knew taking a
break would have helped me.
But for me, the guilt of takingthe break, yeah, when we went,
(26:03):
I went to Kansas for the filmingand I was like ugh, you know
just, it was hard, but Manny waswith him.
Like ugh, you know just, it washard but Manny was with him.
So I knew he was, you know,with somebody he really liked
and being taken care of.
It's just a thing, you know.
But if you can take a break, Iwould recommend it Definitely,
(26:32):
especially with you.
When she needs to go to thesupermarket, have somebody sit
with you so she can go and takeher time there, yeah.
Speaker 2 (26:44):
I tell you, anyone who doesn't have hospice, you
need to check into it.
Speaker 1 (26:49):
It's available for anyone who has louis and this is
coming from a man who's like Idon't need that, yeah, but now
that you have it, because youdon't realize until you get it
you know, and remember hospice.
That's why we played that threepart episode about hospice.
It doesn't mean you're you'reon your last couple days of life
(27:13):
, right, you know?
I mean you're getting so muchhelp, yeah, and if you're not to
the point where you need all ofthat hospice care, palliative
care is the step before hospiceand I really wish I would have
done that when I went to NewJersey and gotten into a hospice
.
And I really wish I would havedone that when I went to New
Jersey and gotten into a hospiceagency, because I was like
(27:39):
behind the eight ball trying todo it, you know, and then I knew
what services they weresupposed to provide, which they.
You got to go back and listento that episode because that was
a little nuts but I'm happy tohear you're having a great
experience with them.
Speaker 2 (27:56):
Yeah, couldn't ask for a better group, yeah.
Speaker 1 (27:59):
Couldn't ask for a better group.
So we just wanted to do a quickone today, because you know
Curry's been busy trying to fixhis house, and me too actually,
and I know you're really tiredbecause you look really tired.
Hopefully this will put youback to sleep.
I hope so.
Anyway, that's what we wantedto talk about today, just to
(28:23):
catch everybody up and thenwe're hoping to get back on
track.
Speaker 2 (28:28):
Yeah, I hope that's all the time we have for this
week, remember?
You can email us withsuggestions on what you'd like
to discuss on a future episode,or you can ask any questions you
have, and we'll do our best toget you the right answer.
Speaker 1 (28:43):
Yep, and remember, we post the link to the podcast in
both the Lewy BodyRollercoaster Facebook page and
our Journey with Lewy Body page,and if you're interested in
helping as a volunteer or anadvocate, please send us your
email at lewybodyrollercoasterat gmailcom.
The more people who reach out,the more people we can help.
Speaker 2 (29:06):
Yes, and if you want to learn how you can be a
supporter of the podcast, justsee the episode notes at the
bottom of the link there, and wepost all the information there
of how you can help support thepodcast.
Yep, and we really appreciateyou.
Speaker 1 (29:23):
Sure do.
Speaker 2 (29:27):
So thanks again for joining us.
Speaker 1 (29:29):
Yep Until next week.
This is Linda.
Speaker 2 (29:32):
And Curry signing off .
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