March 18, 2025 • 25 mins
Caregiving transforms us in ways we rarely anticipate. The journey from those first overwhelming days to developing confidence and systems is filled with valuable lessons—if we take time to recognize them.
Have you ever stopped to consider everything you've learned since becoming a caregiver? From mastering nursing skills without formal training to becoming an amateur pharmacist juggling complex medication schedules, the growth is remarkable. This episode explores that learning curve through my recent experience helping my husband navigate a new cancer treatment regimen.
When faced with multiple new medications—each with specific timing requirements, food interactions, and dosing schedules—the potential for confusion is enormous. After watching my mother accidentally overdose on medications because she couldn't track what she'd taken, I knew we needed a system. What emerged was a personalized approach combining visual medication mapping with digital reminders that respected my husband's need to understand what he was taking and why.
The episode also tackles the delicate balance of providing care while preserving your own wellbeing. Taking a few hours for myself during my husband's treatment wasn't abandonment—it was necessary self-preservation that allowed me to return refreshed and better able to support him. These small adjustments can make an enormous difference in sustaining your caregiving journey.
Whether you're new to caregiving or have been at it for years, this episode offers permission to acknowledge your growth, celebrate your adaptability, and continue asking questions when you need help. Remember, when you prioritize filling your own cup, you can show up as your best self for your loved one. What has your caregiving journey taught you about yourself?
💌 Want more inspiration, information, and a deeper connection? Join the Caregiver Cup Community Newsletter for my weekly email filled with support and encouragement.
Get my free resource: 17 Shifts To Reduce CAREGIVER STRESS & Say Good-bye To CAREGIVER BURNOUT
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Well, hello, my friend, and welcome to another
episode of the Caregiver Cuppodcast.
It's Kathy here.
I hope you are doing well andif you are, just embrace it.
If it's a tough season, grantyourself some grace.
And just a little reminder hereif you haven't joined my email
list, you want to click on thelink below and get on my email
(00:21):
list where I send out weeklyemail newsletters to you with
more tips and tricks besidesthis podcast episode.
So let's jump into the episodetoday.
I want to start out by justreally asking you a question and
I want you to think about whenyou first became a caregiver,
and then I want you to fastforward and compare it to now
(00:48):
and I want you to think aboutwhat have you learned from the
start of your caregiving to now.
Some of you, it's maybe just ashort stint, but for some of us
it's been a long while and it'sjust something that really is
important to think about andwhat prompted me.
I think Heidi last week sent methat email response and talked
about our growth as caregiversand it is a learning.
(01:11):
It's a constant learningprocess for us.
It's a constant self-growth anddevelopment process for us.
This might even be a goodjournaling prompt for you.
What have you learned this weekas a caregiver?
And be a good journaling promptfor you.
What have you learned this weekas a caregiver?
Or what have you learned overthe last month as a caregiver?
Because there's so much we'velearned.
Think about it.
(01:32):
You're learning differentnursing things that, if you are
a professional nurse, youprobably know these, but if
you're like me and have neverbeen in the nursing profession,
you've learned different thingsand ways to watch for your loved
one's symptoms or signs.
Pharmacy is something that youare thrown into with all of the
(01:55):
different medications your lovedone may be getting.
You're learning communication,listening skills, asking
questions, providing feedback,how to handle intense and
challenging situations, and Icould go on and on.
And then also think about whatyou're learning about yourself.
Oh my gosh, it's a constantlearn as you go, and I know
(02:19):
there's different parts of ourlives where we get this all the
time.
Like being a new parent is alearning process, but caregiving
is a learning process as well.
It's amazing if you think aboutit.
When you started, you probablyfelt like a fish out of water,
or when you're into a new season, even you feeling like you're a
fish out of water in most ofyour caregiving roles, if you
(02:42):
think about it.
And now you've learned throughthat experience and you're
continuing to go ahead and honethose as you go.
And as much as we've learned,we still continue to learn.
Right, it's a new drug or a newsituation, or a new challenge,
or a new situation or a newchallenge or a new doctor,
(03:04):
whatever it would be and wefigure it out in real time.
We might be skinning our kneesI think that's the saying where
you fall on your knees or you'refalling down and you have to
get back up.
You're asking questions, you'reembracing your own gut and
(03:25):
doing our best.
We're doing our best for ourloved ones.
Last week, like I said, iswhere I had to ask a lot of
questions.
I had to embrace my gut andwalk through the confusing
challenges.
Let me just share a little bit.
You all know my husband'stargeted for his stem cell
(03:46):
transplant and he's getting anallogenic I think that's how you
pronounce it where my son, matt, is going to donate his cells
to my husband for his lymphomaand non-Hodgkin's lymphoma and
he's been fighting cancer foreight years.
He had an autogenic transplanttwo years ago and now that's
(04:12):
where he donated his own stemcells and now he's getting the
donor and he's targeted forgoing and being admitted on the
24th of April.
So we're in this six monthspreparation and kind of cycle
here.
So now Dennis has finished hislast round of this intense
(04:32):
chemotherapy treatment and nowhe's starting a new treatment
which is a targeted cancer drugwhich is going to ensure his
chronic lymphoma stays put untilhis transplant.
And then he's takingchemotherapy pills two times
daily to keep his non-Hodgkin'sin bay.
(04:56):
And so this new IV drug thathe's getting, like I said, is
for Hodgkin's lymphoma and itstarted last week.
Now I'm going to try topronounce it and I always mess
it up and I swear thesepharmacies and scientists come
up with these new drugs and theyhave fun making these long,
(05:18):
long ones Obentuzumab.
It's Obentuzumab, so that'swhat it's pronounced as.
And obviously, if you know me, Idid a lot of research before
they handed out information tous before he signed his consent.
(05:39):
But we had a doctor's visitlast Thursday which they check
his labs to make sure that he'sready.
They do a physical exam andthen he goes down for treatment
and the doctor said he needs totake this one really slow and he
wants to do this over two daysso it was last Thursday and last
Friday Because there's a riskOut of 100 people, there was 10%
(06:04):
of the people that had anallergic reaction.
This is my research.
I've done that and so he wantsto take it real slow and he
needs 10,000 units I don't knowwhat that means, all I know is
the number and so he has to takeit over two days.
And he said each day of thechemotherapy will be five hours
(06:27):
long, and so he also said thathe needs to put in a
prescription order and thedentist needs to take antiviral
and antibacterial drugs, sincethis treatment compromises his
immune system.
What it does is it just beatsup on his red blood cells and it
(06:48):
lowers his platelet counts andmakes him more susceptible to
everything.
So the doctor ordered for usthat day, while we were having
treatment, there was going to bea nurse that's going to talk
about the chemotherapy trainingprocess or the treatment process
, and then they were going tosend the pharmacy down to do
(07:10):
some pharmaceutical training onthe drugs that he needed.
So the doctor's office is onthe second floor, so we went
back down to the first floor,which is the chemotherapy unit
or the infusion unit, which isthe chemotherapy unit or the
infusion unit, and we walked inand it's kind of like being a
(07:30):
caregiver for a while.
You know what to expect andyour experience, but when
there's a new drug you're backto the learning phase again.
Dennis was extremely nervousbecause he's had history of
having allergic reactions beforeand he knows that they're going
(07:52):
to pump him up with Benadrylwhich makes him edgy.
And so he went down therenervous.
But we trust the process, wetrust the nurses and we just
have to go ahead and go throughwith it.
So the nurses came and we pickout.
He gets to pick out hischemotherapy chair and he
(08:12):
usually picks out one by awindow so he can look out the
window.
So the nurses sat with usexplaining how they were going
to do that process today.
They would give him steroidsand Benadryl.
They have to wait 30 minutesand then they hook up his blood
pressure cup because that'sgoing to be going off every 15
minutes.
And then they were going togive him 10% of the drug, over
(08:39):
10% of that 10,000 units,whatever it is over five hours,
and they were going to mix thatwith just IV fluid.
And they do that slow becausethis drug, like I said, has
allergic reaction symptoms andthey want to monitor them really
close.
So you know, and my husbandknows me, but I ask a lot of
(09:03):
questions.
I've learned that after about ayear into caregiving I ask what
allergic symptoms couldpossibly happen.
So I want to know, I want to beable to watch for them.
I want Dennis to know that it'snot him, it's the drug.
And what do you do if theyhappen?
That's my questions, that Iasked.
(09:25):
And what they do if it happensis they just they slow it down
or they turn it off and theywait for 30 minutes to see if
the symptoms go away, that kindof thing.
But the biggest thing is hisblood pressure will go up or he
will have slurred vision orwhatever.
So they went through all of thepieces there Scary, scary stuff
(09:47):
.
So to make a long story shortand I'll kind of get to that
piece later but he did wonderful.
He did wonderful.
But once they gave him hisBenadryl and steroids, then the
pharmacy came down and did theireducation.
They sat by Dennis in hischemotherapy chair with me next
(10:08):
to him and they walked through.
What they did is they handed usfour sheets.
Each sheet had the drug thatthey were getting.
So he was getting four drugs.
So he got four sheets and eachdrug on the sheet showed a
listing of what the descriptionof the drug was, the dosing, how
many he had to take a day, whenhe had to take them, and
(10:32):
further instructions like youcan take some with or without
food, some you have to take afull glass of water, some you
have to avoid dairy products orantacids or whatever.
So they went through all ofthat and on the sheet they also
went through the side effects.
What the side effects are werethe common and the rare.
You usually go to the pharmacyand get this booklet.
(10:54):
Well, they put it on a nicewhite sheet of paper and kept it
very simple, which is reallynice because we could take those
home with us and we could lookat those again.
But to be honest, it was quiteoverwhelming since he's also
taking his chemotherapy pillstwo times a day.
(11:15):
He's taking other drugs for hisneuropathy, other drugs for his
his acid reflux, and he alsohas anti-nausea meds.
(11:38):
So it's so much and we bothasked questions, which was
really good.
Looking at all of the drugs, Isaid is there any drugs now with
his complete list that aregoing to interact with each
other, because I had that happenwith my mom and so are there
anything that interacts?
I know the pharmacies arereally good and they, they do
that.
And they said no.
And then I asked what, ifthere's a reaction, you know
(11:59):
what should we do?
And obviously stop taking thedrugs and call the doctor, that
kind of thing.
But I also asked that drugs andcall the doctor, that kind of
thing.
But I also asked that.
So to fast forward to us goinghome and then I'll come back
again.
But the pharmacy guy left and Iwas so overwhelmed because now
(12:20):
he had almost 10 bottles ofdrugs and can he handle
remembering everything?
And that's what's going throughmy mind as I was sitting there
before we were going home,because my mom overdosed on her
drugs, because she didn't takethem at the right time.
She forgot that she took some,so then she would take two a day
(12:41):
and I kept that in my mind andthat lesson learned helped me
prepare better for this timearound.
So fast forward to us goinghome.
That day I asked Dennis when wegot into the house I said how
are you going to remember totake all of these, because I
(13:04):
can't treat him like an elderlyperson because he's my spouse
and he's very capable of it.
He said I want to just set myalarms on my phone and with the
names of the drugs.
I said good idea.
I said well, let's map outright now on a piece of paper
all of your drugs and at whattime.
(13:24):
On a piece of paper, all ofyour drugs and at what time.
And I'm like before breakfast,after breakfast, midday
afternoon, you know all of theones that he had to take.
And we mapped them out on apiece of paper.
And he questioned why I wasmapping them out and I said I'm
(13:45):
a visual person and I need tosee them, because there's ones
that he only takes on Monday,wednesdays and Fridays.
There's some that he has totake before a meal, that some of
them he has to take on a fullstomach.
There's some of them he has totake with a full glass of water.
All these little instructions,and I wanted to map them out,
(14:12):
little instructions, and Iwanted to map them out.
And once he saw that, he waslike I think this is going to
work with my alarm.
So what we did is we have aspot on the cupboard with all of
his drugs and then right nextto that we posted that sheet up
there.
So when his alarm goes off, hegoes to the counter, he looks at
what time his alarm went offand he looks at what drugs he
needs and the name of the drugWyn.
(14:35):
It is a Wyn right now becausehe feels like when they're in
the pill bottle he knows whatthey are and he knows what he's
taking.
He likes that process, versusmy mom didn't like that process.
She just wanted the stack ofpills and at what time she had
to take them.
(14:55):
She didn't care about what theywere, she just needed to know
when, versus my husband needs toknow what and when, and so it's
just interesting.
So this it gets me thinkingabout how caregivers like you
and I and other caregivers andthe patients, and how they
(15:18):
struggle with all of these drugs, especially when they hand them
to you all at once with sheetsof paper and you're getting your
new infusion and you're worriedabout the allergic reaction and
now they're telling you you gotto take these home and to take
them and you're like your headis just exploded.
So I had lunch with my sisteryesterday and she had sat.
(15:41):
She works for a pharmaceuticalcompany that and she has long
term care facility clients whereshe goes ahead and gets all of
their medications prepped andreviewed and works with the
pharmacy.
And also my sister worked at along-term care facility an
assistant living facility and Iasked her have you experienced
(16:06):
this before, where people aretotally confused and she goes oh
my gosh, it is so confusing.
I said, how do patients and thecaregivers figure this all out?
Because you get the drugs thedrugs I have, you know writing
on them and they tell you whento take them and everything.
But when you have that many,how do you remember it all?
(16:27):
And so she said, hopefully theygo home and put it in their
pill bottle or hopefully theyhave a caregiver, hopefully they
go home and put it in theirpill bottle or hopefully they
have a caregiver.
But she said, if you'restruggling, don't leave until
you feel confident, knowing thatyou can figure it out.
(16:47):
So the pharmacist can sit withyou and write out a map.
The nurse at the doctor'soffice can create a map for you.
You can go ahead and get a pillbox or a pill packet where you
punch them out if they're goingto be ongoing meds so you can go
ahead and figure those out.
(17:07):
So my sister talked about allof this and really worked
through it and so if you'resitting at home and you're just
frustrating with all of thedrugs and you don't know what's
happening, it might be a goodidea to sit down and have a
discussion with your loved one,or go to the pharmacy and have
them help you, or talk to thenurse to see if somebody can sit
(17:31):
down with you and map them out,to see if somebody can sit down
with you and map them out.
Now, after we got done with thetreatment instructions, the
pharmacy and then they startedhis treatment and about an hour
after it our nurse navigatorcame by and asked us how we were
doing.
(17:51):
Did we have any questionsregarding the drugs or his
treatment today?
And I shared that this wasreally overwhelming with her and
she said do you have anyquestions?
And so it just opened up someconversations to say I don't
(18:13):
really have any questions rightnow, but this is overwhelming,
this is a lot to take in.
I told her I didn't understandwhat this 10,000 unit was and
you know the new drug cancertherapy drug.
So she spent a little timesaying it over again, which was
really nice for us to understand.
(18:34):
And then she left the windowopen to say just if you have any
questions, don't hesitate toask.
So don't hesitate to look atother opportunities where you
can go ahead and recheck in,call the doctor, talk to a nurse
again, so that you can do that.
I've learned that over and overagain to go ahead and just
(18:57):
continue to share your thoughtsand feelings and ask questions.
So Dennis had a good day onenight, you know, with just some
minor symptoms.
So we were off in the morningto day two, and day two in the
morning was, I think, at thesame time, he'd be there at like
eight o'clock or 810 orsomething like that.
(19:19):
And I had discussion with himthat night to say how about if
we, how about if I drop you off?
Because I've learned thatsitting for five hours each day
drains me and it affects mymental health and I get edgy and
(19:43):
frustrated and all that kind ofstuff.
And we've had open discussionsabout that.
And so I said, since youtolerated it well the first day,
since you tolerated it well thefirst day, how about if I go
ahead and drop you off and comeback a little bit later and he
was 100% on board with that andwas perfectly okay.
(20:04):
And I think it depends on yourloved one.
With my mom I could have neverdid that, but for Dennis I could
.
And so we got up in the morningand I told Dennis you go ahead
and eat your breakfast and getready and just kind of relax the
morning.
I walk the dogs in the morning,and then the dogs were really
excited because we drove Dennisto his appointment.
(20:27):
We dropped him off at the door,I told him text me when you get
in your spot and give me someprogress updates and then also
give the nurse my number.
And so he did all of that.
So I went back home and I wasable to throw in a load of wash,
(20:48):
I did some cleaning of thehouse, I showered, cleaning of
the house, I showered, and thenhe wanted a Jimmy John's sub,
and so I picked up each of us asub, and then I brought it back
at about 11 o'clock.
It was just the perfect time forme to just be away for a few
hours, and so then I it wasabout 11, 15 or so I walked in
(21:15):
the door and he was sittingthere.
The nurse came over right awaybecause she saw that I came back
and said he was doing reallygood and it gave him some time
to.
I think he downloaded somemovies to watch and he was able
to rest a little bit as well andthen he got to eat a little bit
(21:35):
and really this helped both ofour well-beings and I've learned
that it's okay to go ahead andand while they're being cared
for, you can go ahead and carefor yourself at the same time,
and I was just a phone call awayand so I could have bopped back
in the car and been there in 20, 25 minutes and been right
(21:58):
there by his side if I needed to.
So these are kind of the thingsthat I went through last week
to go ahead and learn from you,learn through your experiences.
You learn as you go and it's anonstop learning experience.
So I want to just close uptoday in hopes that you got
(22:22):
something out of this.
I didn't know I was walking thismorning going.
Would this be enough for all ofmy caregivers listening and for
you listening, to go ahead andjust glean some tips and
insights out of this, becausecaring for a loved one does not
mean that you have to do it 24-7.
(22:44):
You know, you have to findthese little pieces of breaks,
like I did on day two, and thenalso pieces of breaks, like I
did on day two, and then alsobecause your loved one is going
into new seasons, or when theygo into new seasons and
stressful, you have to alsolearn to go ahead and adjust and
adapt and realize that I'm innew territory.
(23:07):
And then I have to askquestions.
So I hope this helped.
I'm rambling on.
Thank you for being here andsharing in my moments today of
vulnerability and growth with me.
You know, as I wrap up thisepisode, remember that each day
for you brings new opportunitiesto learn and to take care of
yourself.
(23:29):
Even while we care so deeply forothers, we also have to care
for ourself.
We've all been there navigatingthrough those overwhelming
information, balancing complextreatment plans or inpatient
plans, whatever it would be, andfinding a creative solution,
(23:51):
like for me it was mapping outmedications last week, or my
husband's idea of settingreminders on his phone.
Keep asking questions, my friend, keep leaning on one another
and, most importantly, keepnurturing your own well-being.
And I'm going to go back to thekeep leaning on one another and
(24:15):
you also want to find out whoyour partners are, if you have a
favorite pharmacist, or if youhave a favorite nurse, or who
that person is, and keep tappinginto it.
So until next time, my friend,let's embrace this journey
together the good, the bad, theugly, one step at a time.
(24:38):
Embrace the good, discover whatyou've learned from the
challenges and move forward.
So I'm hoping this kept youinspired.
And until next time, my friend,take care and remember you are
doing the best you can for yourloved one and when you fill your
(25:01):
cup first, you can show up asyour best self.
So until next time, have a goodrest of the week and bye for
now.
Well, hello, my friend, and welcome to another
episode of the Caregiver Cuppodcast.
It's Kathy here.
I hope you are doing well andif you are, just embrace it.
If it's a tough season, grantyourself some grace.
And just a little reminder hereif you haven't joined my email
list, you want to click on thelink below and get on my email
(00:21):
list where I send out weeklyemail newsletters to you with
more tips and tricks besidesthis podcast episode.
So let's jump into the episodetoday.
I want to start out by justreally asking you a question and
I want you to think about whenyou first became a caregiver,
and then I want you to fastforward and compare it to now
(00:48):
and I want you to think aboutwhat have you learned from the
start of your caregiving to now.
Some of you, it's maybe just ashort stint, but for some of us
it's been a long while and it'sjust something that really is
important to think about andwhat prompted me.
I think Heidi last week sent methat email response and talked
about our growth as caregiversand it is a learning.
(01:11):
It's a constant learningprocess for us.
It's a constant self-growth anddevelopment process for us.
This might even be a goodjournaling prompt for you.
What have you learned this weekas a caregiver?
And be a good journaling promptfor you.
What have you learned this weekas a caregiver?
Or what have you learned overthe last month as a caregiver?
Because there's so much we'velearned.
Think about it.
(01:32):
You're learning differentnursing things that, if you are
a professional nurse, youprobably know these, but if
you're like me and have neverbeen in the nursing profession,
you've learned different thingsand ways to watch for your loved
one's symptoms or signs.
Pharmacy is something that youare thrown into with all of the
(01:55):
different medications your lovedone may be getting.
You're learning communication,listening skills, asking
questions, providing feedback,how to handle intense and
challenging situations, and Icould go on and on.
And then also think about whatyou're learning about yourself.
Oh my gosh, it's a constantlearn as you go, and I know
(02:19):
there's different parts of ourlives where we get this all the
time.
Like being a new parent is alearning process, but caregiving
is a learning process as well.
It's amazing if you think aboutit.
When you started, you probablyfelt like a fish out of water,
or when you're into a new season, even you feeling like you're a
fish out of water in most ofyour caregiving roles, if you
(02:42):
think about it.
And now you've learned throughthat experience and you're
continuing to go ahead and honethose as you go.
And as much as we've learned,we still continue to learn.
Right, it's a new drug or a newsituation, or a new challenge,
or a new situation or a newchallenge or a new doctor,
(03:04):
whatever it would be and wefigure it out in real time.
We might be skinning our kneesI think that's the saying where
you fall on your knees or you'refalling down and you have to
get back up.
You're asking questions, you'reembracing your own gut and
(03:25):
doing our best.
We're doing our best for ourloved ones.
Last week, like I said, iswhere I had to ask a lot of
questions.
I had to embrace my gut andwalk through the confusing
challenges.
Let me just share a little bit.
You all know my husband'stargeted for his stem cell
(03:46):
transplant and he's getting anallogenic I think that's how you
pronounce it where my son, matt, is going to donate his cells
to my husband for his lymphomaand non-Hodgkin's lymphoma and
he's been fighting cancer foreight years.
He had an autogenic transplanttwo years ago and now that's
(04:12):
where he donated his own stemcells and now he's getting the
donor and he's targeted forgoing and being admitted on the
24th of April.
So we're in this six monthspreparation and kind of cycle
here.
So now Dennis has finished hislast round of this intense
(04:32):
chemotherapy treatment and nowhe's starting a new treatment
which is a targeted cancer drugwhich is going to ensure his
chronic lymphoma stays put untilhis transplant.
And then he's takingchemotherapy pills two times
daily to keep his non-Hodgkin'sin bay.
(04:56):
And so this new IV drug thathe's getting, like I said, is
for Hodgkin's lymphoma and itstarted last week.
Now I'm going to try topronounce it and I always mess
it up and I swear thesepharmacies and scientists come
up with these new drugs and theyhave fun making these long,
(05:18):
long ones Obentuzumab.
It's Obentuzumab, so that'swhat it's pronounced as.
And obviously, if you know me, Idid a lot of research before
they handed out information tous before he signed his consent.
(05:39):
But we had a doctor's visitlast Thursday which they check
his labs to make sure that he'sready.
They do a physical exam andthen he goes down for treatment
and the doctor said he needs totake this one really slow and he
wants to do this over two daysso it was last Thursday and last
Friday Because there's a riskOut of 100 people, there was 10%
(06:04):
of the people that had anallergic reaction.
This is my research.
I've done that and so he wantsto take it real slow and he
needs 10,000 units I don't knowwhat that means, all I know is
the number and so he has to takeit over two days.
And he said each day of thechemotherapy will be five hours
(06:27):
long, and so he also said thathe needs to put in a
prescription order and thedentist needs to take antiviral
and antibacterial drugs, sincethis treatment compromises his
immune system.
What it does is it just beatsup on his red blood cells and it
(06:48):
lowers his platelet counts andmakes him more susceptible to
everything.
So the doctor ordered for usthat day, while we were having
treatment, there was going to bea nurse that's going to talk
about the chemotherapy trainingprocess or the treatment process
, and then they were going tosend the pharmacy down to do
(07:10):
some pharmaceutical training onthe drugs that he needed.
So the doctor's office is onthe second floor, so we went
back down to the first floor,which is the chemotherapy unit
or the infusion unit, which isthe chemotherapy unit or the
infusion unit, and we walked inand it's kind of like being a
(07:30):
caregiver for a while.
You know what to expect andyour experience, but when
there's a new drug you're backto the learning phase again.
Dennis was extremely nervousbecause he's had history of
having allergic reactions beforeand he knows that they're going
(07:52):
to pump him up with Benadrylwhich makes him edgy.
And so he went down therenervous.
But we trust the process, wetrust the nurses and we just
have to go ahead and go throughwith it.
So the nurses came and we pickout.
He gets to pick out hischemotherapy chair and he
(08:12):
usually picks out one by awindow so he can look out the
window.
So the nurses sat with usexplaining how they were going
to do that process today.
They would give him steroidsand Benadryl.
They have to wait 30 minutesand then they hook up his blood
pressure cup because that'sgoing to be going off every 15
minutes.
And then they were going togive him 10% of the drug, over
(08:39):
10% of that 10,000 units,whatever it is over five hours,
and they were going to mix thatwith just IV fluid.
And they do that slow becausethis drug, like I said, has
allergic reaction symptoms andthey want to monitor them really
close.
So you know, and my husbandknows me, but I ask a lot of
(09:03):
questions.
I've learned that after about ayear into caregiving I ask what
allergic symptoms couldpossibly happen.
So I want to know, I want to beable to watch for them.
I want Dennis to know that it'snot him, it's the drug.
And what do you do if theyhappen?
That's my questions, that Iasked.
(09:25):
And what they do if it happensis they just they slow it down
or they turn it off and theywait for 30 minutes to see if
the symptoms go away, that kindof thing.
But the biggest thing is hisblood pressure will go up or he
will have slurred vision orwhatever.
So they went through all of thepieces there Scary, scary stuff
(09:47):
.
So to make a long story shortand I'll kind of get to that
piece later but he did wonderful.
He did wonderful.
But once they gave him hisBenadryl and steroids, then the
pharmacy came down and did theireducation.
They sat by Dennis in hischemotherapy chair with me next
(10:08):
to him and they walked through.
What they did is they handed usfour sheets.
Each sheet had the drug thatthey were getting.
So he was getting four drugs.
So he got four sheets and eachdrug on the sheet showed a
listing of what the descriptionof the drug was, the dosing, how
many he had to take a day, whenhe had to take them, and
(10:32):
further instructions like youcan take some with or without
food, some you have to take afull glass of water, some you
have to avoid dairy products orantacids or whatever.
So they went through all ofthat and on the sheet they also
went through the side effects.
What the side effects are werethe common and the rare.
You usually go to the pharmacyand get this booklet.
(10:54):
Well, they put it on a nicewhite sheet of paper and kept it
very simple, which is reallynice because we could take those
home with us and we could lookat those again.
But to be honest, it was quiteoverwhelming since he's also
taking his chemotherapy pillstwo times a day.
(11:15):
He's taking other drugs for hisneuropathy, other drugs for his
his acid reflux, and he alsohas anti-nausea meds.
(11:38):
So it's so much and we bothasked questions, which was
really good.
Looking at all of the drugs, Isaid is there any drugs now with
his complete list that aregoing to interact with each
other, because I had that happenwith my mom and so are there
anything that interacts?
I know the pharmacies arereally good and they, they do
that.
And they said no.
And then I asked what, ifthere's a reaction, you know
(11:59):
what should we do?
And obviously stop taking thedrugs and call the doctor, that
kind of thing.
But I also asked that drugs andcall the doctor, that kind of
thing.
But I also asked that.
So to fast forward to us goinghome and then I'll come back
again.
But the pharmacy guy left and Iwas so overwhelmed because now
(12:20):
he had almost 10 bottles ofdrugs and can he handle
remembering everything?
And that's what's going throughmy mind as I was sitting there
before we were going home,because my mom overdosed on her
drugs, because she didn't takethem at the right time.
She forgot that she took some,so then she would take two a day
(12:41):
and I kept that in my mind andthat lesson learned helped me
prepare better for this timearound.
So fast forward to us goinghome.
That day I asked Dennis when wegot into the house I said how
are you going to remember totake all of these, because I
(13:04):
can't treat him like an elderlyperson because he's my spouse
and he's very capable of it.
He said I want to just set myalarms on my phone and with the
names of the drugs.
I said good idea.
I said well, let's map outright now on a piece of paper
all of your drugs and at whattime.
(13:24):
On a piece of paper, all ofyour drugs and at what time.
And I'm like before breakfast,after breakfast, midday
afternoon, you know all of theones that he had to take.
And we mapped them out on apiece of paper.
And he questioned why I wasmapping them out and I said I'm
(13:45):
a visual person and I need tosee them, because there's ones
that he only takes on Monday,wednesdays and Fridays.
There's some that he has totake before a meal, that some of
them he has to take on a fullstomach.
There's some of them he has totake with a full glass of water.
All these little instructions,and I wanted to map them out,
(14:12):
little instructions, and Iwanted to map them out.
And once he saw that, he waslike I think this is going to
work with my alarm.
So what we did is we have aspot on the cupboard with all of
his drugs and then right nextto that we posted that sheet up
there.
So when his alarm goes off, hegoes to the counter, he looks at
what time his alarm went offand he looks at what drugs he
needs and the name of the drugWyn.
(14:35):
It is a Wyn right now becausehe feels like when they're in
the pill bottle he knows whatthey are and he knows what he's
taking.
He likes that process, versusmy mom didn't like that process.
She just wanted the stack ofpills and at what time she had
to take them.
(14:55):
She didn't care about what theywere, she just needed to know
when, versus my husband needs toknow what and when, and so it's
just interesting.
So this it gets me thinkingabout how caregivers like you
and I and other caregivers andthe patients, and how they
(15:18):
struggle with all of these drugs, especially when they hand them
to you all at once with sheetsof paper and you're getting your
new infusion and you're worriedabout the allergic reaction and
now they're telling you you gotto take these home and to take
them and you're like your headis just exploded.
So I had lunch with my sisteryesterday and she had sat.
(15:41):
She works for a pharmaceuticalcompany that and she has long
term care facility clients whereshe goes ahead and gets all of
their medications prepped andreviewed and works with the
pharmacy.
And also my sister worked at along-term care facility an
assistant living facility and Iasked her have you experienced
(16:06):
this before, where people aretotally confused and she goes oh
my gosh, it is so confusing.
I said, how do patients and thecaregivers figure this all out?
Because you get the drugs thedrugs I have, you know writing
on them and they tell you whento take them and everything.
But when you have that many,how do you remember it all?
(16:27):
And so she said, hopefully theygo home and put it in their
pill bottle or hopefully theyhave a caregiver, hopefully they
go home and put it in theirpill bottle or hopefully they
have a caregiver.
But she said, if you'restruggling, don't leave until
you feel confident, knowing thatyou can figure it out.
(16:47):
So the pharmacist can sit withyou and write out a map.
The nurse at the doctor'soffice can create a map for you.
You can go ahead and get a pillbox or a pill packet where you
punch them out if they're goingto be ongoing meds so you can go
ahead and figure those out.
(17:07):
So my sister talked about allof this and really worked
through it and so if you'resitting at home and you're just
frustrating with all of thedrugs and you don't know what's
happening, it might be a goodidea to sit down and have a
discussion with your loved one,or go to the pharmacy and have
them help you, or talk to thenurse to see if somebody can sit
(17:31):
down with you and map them out,to see if somebody can sit down
with you and map them out.
Now, after we got done with thetreatment instructions, the
pharmacy and then they startedhis treatment and about an hour
after it our nurse navigatorcame by and asked us how we were
doing.
(17:51):
Did we have any questionsregarding the drugs or his
treatment today?
And I shared that this wasreally overwhelming with her and
she said do you have anyquestions?
And so it just opened up someconversations to say I don't
(18:13):
really have any questions rightnow, but this is overwhelming,
this is a lot to take in.
I told her I didn't understandwhat this 10,000 unit was and
you know the new drug cancertherapy drug.
So she spent a little timesaying it over again, which was
really nice for us to understand.
(18:34):
And then she left the windowopen to say just if you have any
questions, don't hesitate toask.
So don't hesitate to look atother opportunities where you
can go ahead and recheck in,call the doctor, talk to a nurse
again, so that you can do that.
I've learned that over and overagain to go ahead and just
(18:57):
continue to share your thoughtsand feelings and ask questions.
So Dennis had a good day onenight, you know, with just some
minor symptoms.
So we were off in the morningto day two, and day two in the
morning was, I think, at thesame time, he'd be there at like
eight o'clock or 810 orsomething like that.
(19:19):
And I had discussion with himthat night to say how about if
we, how about if I drop you off?
Because I've learned thatsitting for five hours each day
drains me and it affects mymental health and I get edgy and
(19:43):
frustrated and all that kind ofstuff.
And we've had open discussionsabout that.
And so I said, since youtolerated it well the first day,
since you tolerated it well thefirst day, how about if I go
ahead and drop you off and comeback a little bit later and he
was 100% on board with that andwas perfectly okay.
(20:04):
And I think it depends on yourloved one.
With my mom I could have neverdid that, but for Dennis I could
.
And so we got up in the morningand I told Dennis you go ahead
and eat your breakfast and getready and just kind of relax the
morning.
I walk the dogs in the morning,and then the dogs were really
excited because we drove Dennisto his appointment.
(20:27):
We dropped him off at the door,I told him text me when you get
in your spot and give me someprogress updates and then also
give the nurse my number.
And so he did all of that.
So I went back home and I wasable to throw in a load of wash,
(20:48):
I did some cleaning of thehouse, I showered, cleaning of
the house, I showered, and thenhe wanted a Jimmy John's sub,
and so I picked up each of us asub, and then I brought it back
at about 11 o'clock.
It was just the perfect time forme to just be away for a few
hours, and so then I it wasabout 11, 15 or so I walked in
(21:15):
the door and he was sittingthere.
The nurse came over right awaybecause she saw that I came back
and said he was doing reallygood and it gave him some time
to.
I think he downloaded somemovies to watch and he was able
to rest a little bit as well andthen he got to eat a little bit
(21:35):
and really this helped both ofour well-beings and I've learned
that it's okay to go ahead andand while they're being cared
for, you can go ahead and carefor yourself at the same time,
and I was just a phone call awayand so I could have bopped back
in the car and been there in 20, 25 minutes and been right
(21:58):
there by his side if I needed to.
So these are kind of the thingsthat I went through last week
to go ahead and learn from you,learn through your experiences.
You learn as you go and it's anonstop learning experience.
So I want to just close uptoday in hopes that you got
(22:22):
something out of this.
I didn't know I was walking thismorning going.
Would this be enough for all ofmy caregivers listening and for
you listening, to go ahead andjust glean some tips and
insights out of this, becausecaring for a loved one does not
mean that you have to do it 24-7.
(22:44):
You know, you have to findthese little pieces of breaks,
like I did on day two, and thenalso pieces of breaks, like I
did on day two, and then alsobecause your loved one is going
into new seasons, or when theygo into new seasons and
stressful, you have to alsolearn to go ahead and adjust and
adapt and realize that I'm innew territory.
(23:07):
And then I have to askquestions.
So I hope this helped.
I'm rambling on.
Thank you for being here andsharing in my moments today of
vulnerability and growth with me.
You know, as I wrap up thisepisode, remember that each day
for you brings new opportunitiesto learn and to take care of
yourself.
(23:29):
Even while we care so deeply forothers, we also have to care
for ourself.
We've all been there navigatingthrough those overwhelming
information, balancing complextreatment plans or inpatient
plans, whatever it would be, andfinding a creative solution,
(23:51):
like for me it was mapping outmedications last week, or my
husband's idea of settingreminders on his phone.
Keep asking questions, my friend, keep leaning on one another
and, most importantly, keepnurturing your own well-being.
And I'm going to go back to thekeep leaning on one another and
(24:15):
you also want to find out whoyour partners are, if you have a
favorite pharmacist, or if youhave a favorite nurse, or who
that person is, and keep tappinginto it.
So until next time, my friend,let's embrace this journey
together the good, the bad, theugly, one step at a time.
(24:38):
Embrace the good, discover whatyou've learned from the
challenges and move forward.
So I'm hoping this kept youinspired.
And until next time, my friend,take care and remember you are
doing the best you can for yourloved one and when you fill your
(25:01):
cup first, you can show up asyour best self.
So until next time, have a goodrest of the week and bye for
now.
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