August 12, 2025 • 57 mins
The story of Mollie and Maureen powerfully illustrates the emotional depth and complexities of family caregiving when ALS profoundly impacts a household. Maureen, a pediatric nurse from Philadelphia, took on the primary caregiving role for her mother after her father's death. This decision was driven by both her medical background and a deep sense of love and responsibility. She skillfully managed the demands of her career, family, and caregiving, coordinating her siblings and extended family to honor her mother's desire to remain at home. The path to an ALS diagnosis was uncertain, involving multiple specialists and a gradual understanding of the disease's progression. Despite her professional experience, Maureen found herself learning extensively about ALS, underscoring how even healthcare professionals face significant learning curves when caring for loved ones.
Maureen's daughter, Mollie, offered a distinct perspective as a support to her mother and as a member of the next generation grappling with the implications of a genetic disease. After her grandmother's diagnosis and passing, Mollie's career shifted toward pharmaceuticals and rare disease case management, fueled by her connection to ALS. She also confronted the difficult decision of genetic testing, discovering she carried a mutation linked to ALS. This knowledge influenced significant life choices, including family planning and open discussions with her now-husband about their future.
Their narrative highlights the importance of workplace flexibility for caregivers, the value of transparent family communication, and the necessity of support systems, both within and outside the family. Through their involvement, they are contributing to a more informed and compassionate approach to ALS and caregiving, offering hope and guidance to others navigating similar journeys.
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Learn more about Confessions of a Reluctant Caregiver: https://confessionsofareluctantcaregiver.com/
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Confessions of a Reluctant Caregiver
Sisterhood of Care, LLC
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Natalie (00:00):
Hey guys, it's your favorite sisters with the
(00:02):
Confessions of a reluctantcaregiver. Podcast. On the show,
you'll hear caregiversconfessing the good, the bad and
the completely unexpected.
You're guaranteed to relate beinspired. Leave with helpful
tips and resources and, ofcourse, laugh. Now let's jump
right in to today's guestconfession. Hey, Jay, hey,
Natalie, how are you doing this
JJ (00:27):
morning? You know, I got some coffee and I'm feeling
great. Yeah, I've got water,
Natalie (00:32):
and I realized before we started I needed to pee.
JJ (00:35):
That's way too much for us to start. The audience doesn't
want to hear that. Yeah,
Natalie (00:38):
and I was going to sing this morning, but since we've
got two guests on and there's somuch good stuff, I'm not going
to sing, although I was thinkingabout it, okay, well, I'm going
to get started, because started,this is going to be such a good
show. And I'm very excited. Andwe've got a mother daughter, and
we've never had a motherdaughter combo. We
JJ (00:56):
absolutely have not. So I want to tell you about who we
have, and everybody laughs,because I have to look down and
look really closely because Idon't have my glasses on. So if
you're listening, just know I'mlooking down because I'm not
wearing my glasses. So let metell you guys who we have today.
Today we have with us, MollyMcCloskey. I always mess that
up. Molly, sorry. Molly. Molly.
McCloskey. Healy and MaureenMcCloskey. And first of all, I'd
(01:19):
like to say they are a motherand daughter team. Yeah, I love
teams. I love teams. They havebeen caregivers. They are
caregivers. They will becaregivers, and they will need
to be cared for. I say they arethe reason why Rosalynn Carter,
that's that's why she feared.
Statement, they are that.
Statement, yeah, both havehealthcare backgrounds, and I
(01:42):
think that's a path that theywere both destined and chose to
take. Matt, today, we're goingto talk about ALS, we're going
to talk about Alzheimer's. We'regoing to talk about frontal,
frontal, temporal dementia, andeven the recognition that you
are predestined to become, tobecome a you predestined to
(02:05):
those because of a gene that amutated gene that is actually
already recognized because ofsome testing. So I want to
welcome today, MaureenMcCloskey, good morning here.
Thank you. And Molly,
Unknown (02:27):
Hi, good morning everybody.
JJ (02:29):
Hi, good morning.
Natalie (02:30):
So excited to have you guys. So I know this is the
first time we're having two. Youknow, we did have two people. It
was a husband and wife, but theywere in the same frame, yeah.
And so this is there in we'vegot one person in Philadelphia,
Marines in Philadelphia. Andthen Molly, you're in Kansas
City, right? Yes. Okay, sonormally we always JJ and I were
(02:53):
talking about to make sure thatwe really got the story out.
Normally, I always talk about,tell us, you know, from the
beginning, tell us aboutyourself, and I'm going to
actually ask both of you to tellus a little bit about yourself,
and I'm going to start withMaureen if you want to tell us a
little bit about your backgroundgrowing up, and a little bit
about your family. Because thisI know that your care started
(03:17):
with your mom, but care haspermeated throughout the entire
family. So Maureen, and thenMolly, we'll jump to you after
we chat with your mom. SoMaureen, you're on the hot seat.
So tell us a little bit aboutyour background, where you're
from, your sibs, all that good
Unknown (03:37):
stuff. Very good. As I said, happy to be here. I am one
of four children. I was born andraised in Philadelphia.
Actually, I live in the home Ibought the home that I was
raised in from my parents about23 years ago at this point. So
my parents are both deceased atthis time. I am the youngest of
(04:01):
four children. I have an oldersister and two older brothers. I
am married now, and have threewonderful children and one
granddaughter. I'm a nurse, bybackground, I'm a pediatric
nurse, and have worked at thesame facility for 38 years. Wow.
Back in 2020 I switched mycareer path a little bit and
(04:26):
became an infectionpreventionist at the same
institution. So I've been aninfection preventionist, still
holding my nursing license andpracticing as a nurse, but also
now certified in infectioncontrol since 20 since 2020
unfortunately, that happenedduring the pandemic, when they
were in highest need. And I tookthis little career path just to
(04:49):
help out for a little while, butreally found the liking to it
better, work, life balance and awhole kind of a different world
to be a part of, and liked it.
So took a four. Time position atthat time.
Natalie (05:02):
Do you think that that switch in positions potentially
helped you with caring for yourmom?
Unknown (05:09):
So it's interesting, it actually happened around the
same time. So by this switchhappened in 2020, just as my mom
was. I guess this positionstarted before my mom started
with symptoms, but shortly afterI took the position, my mother
did have surgery, and thensymptoms of ALS started to
(05:32):
appear at that time. And yes, Ido think that this has helped
me, because it's a much moreflexible position. I am able to
work from home. My days off canbe a little bit more in the
moment than when I was at thebedside, doing nursing where
things needed to be a little bitmore scheduled out
Natalie (05:49):
that's true.
JJ (05:50):
Shows how important that employers
Natalie (05:52):
are. I'm telling you right now, employers and
flexibility and caregiving, Ithink that's such a such a big
thing that we always want tovisit to say out loud, because,
you know, seven out of 10caregivers also work full time
or part time, and they not onlyneed to do that, want to do that
as well. Rather, it's financialreasons, just, honestly, a
(06:15):
sanity check. And so, okay,let's switch over to Molly.
JJ (06:19):
Molly,
Unknown (06:22):
Hi, yes, you have me here. I am 30 years old, and
recently got married. I guessI'm going a little bit
backwards, but I'm fromPhiladelphia. Was born and
raised there for the first 28years of my life, until a couple
years ago, my now husband is anAir Force pilot, so we are out
here in Kansas City now forthat, but I grew up with my two
(06:45):
siblings, my younger brother, myolder sister, my parents and a
very large, very large family,very loving large family, which
was, you know, a greatexperience for me, with cousins
and aunts and uncles, alwaysaround my grandparents. So we're
all very close. And grew up andwent to school in Philadelphia.
I went to high school right inCenter City of Philadelphia, and
(07:06):
then went to Temple Universityfor my undergrad degree, and
graduated from there and alsocommissioned as a officer in the
Army through the Army ROTCprogram at Temple. So now I
currently work inpharmaceuticals, but as a case
manager for a rare disease drug,a couple of rare disease drugs
for neuromuscular rare diseasewas doing that previously with
(07:30):
the ALS community, and nowworking with the myasthenia
gravis and neuromyelitis opticaspectrum disorder diagnoses. So
that is kind of where I'm atnow, but I spent a couple of
years trying to find my way alittle bit, and was in the
healthcare setting. I was at thesame hospital as my mom for a
couple of years, which was sofun, and then at the VA for a
(07:51):
little while, and as an organtransplant coordinator, so I've
kind of had a little bit of ataste of everything when it
comes to case management in thehealthcare world, and then
switched over to pharmaceuticalsin the last like five years or
so.
JJ (08:03):
So that's very interesting.
I will just ask if your past atthe time, I know that you were
in college, and you've come upto that 30, which is very young.
She are just a puppy. She's apuppy. Have some of your
experience as experiences ascaregivers, and then knowing and
being familiar with ALS andAlzheimer's and other diseases.
(08:27):
Have those led you down the paththat you choose to go Molly? Has
that kind of given you someinsight?
Unknown (08:37):
Yes. So actually, up until my grandmother had been
diagnosed, and then passive ALS,I was still in the healthcare
side of the world of, you know,healthcare and in, like, a
clinical setting. And I thinkshe passed in October of 2021,
and in about December. So maybe,like, eight weeks after that, I
(08:59):
stumbled across a company thatwas looking for case managers in
the pharmaceutical world for adrug that was going to be coming
to market for ALS, actually. Soit was a little bit of like a,
oh my gosh, did she just plopthis down into my lap? You know,
I was not really looking for ajob, but had, you know, I was
actually creating a LinkedIn forthe first time because I hadn't
(09:19):
had one, and right in front ofme was this job posting. Of, you
know, we are looking for peoplewho can help with patients
gaining access to new therapy,but want people to be familiar
with the disease that is ALS,because a lot of our role was
kind of helping people guidethrough that newly diagnosed
period and getting access to newtherapy. So I really felt like
(09:41):
fate a little bit. And Iabsolutely loved my time at the
first company that I worked for,and then have since moved on to
another company, and really kindof continued on that path. And I
definitely see myself goingfurther, you know, in that
direction, and a little bit morein the world of like advocacy
and patient access to. Andhelping people with navigating
(10:01):
the rare diseases that theyhave. So it's definitely been a
large part of my own careerjourney to just have been
exposed to ALS through myfamily. Yeah,
Natalie (10:09):
very interesting. So I want to Maureen, I want to jump
back to you. This is much morefun. This is like this. Go back
on the other episode of Maureen.
Hey, Maureen. I want to go aheadand let's, let's talk about your
mother and ALS and thatdiagnosis, and is this, I'd like
to get a little bit morebackground about when she was
(10:31):
diagnosed. But did the familyknow that this is a genetic
issue? And let's talk about whatcare was like, because I know,
Molly, you stepped in as wellintermittently, and then
especially towards the end ofreally helping to support your
mom. And we'll come back to you.
So Maureen, let's jump back onwith you and give us, give us
(10:54):
some background on that and tellus kind of what happened. Sure,
Unknown (10:58):
it was difficult to kind of figure out what was
going on with my mom. She hadvery healthy, 82 years old, very
independent. My father hadpassed away in 2016 and she kind
of found her way without him,with the support of the family.
But in 2020 she was very activeand started to have some
(11:18):
difficulty with moving around,kind of being as independent as
she wanted. She was bowling, shewas going to aerobics, she would
go swimming, she was going outwith her friends. She she had a
really close community. On topof having family close by
keeping her very busy, we hadtaken her to an orthopedic
(11:39):
because her right knee was kindof really bothering her, which
she had had trouble before. Withthat, they actually did a knee
replacement in June of 2020, forwhich she recovered very well
from I moved in with her for acouple of weeks at that time to
get her through, you know, gether back to being independent.
And she made it througheverything really well. But then
(11:59):
about in I guess in thebeginning of August, we started
to notice a couple of slightchanges in her that just weren't
adding up. Her voice became veryhoarse. She seemed to be
clearing her throat a lot,having difficulty talking on the
phone. Sometimes people weretelling me, people being family
and like my my mom's siblings,and my siblings telling me, oh,
(12:24):
it's all because she had surgeryand she had, you know, a tube
down, she was intubated, and hervoice is just worse. It's
probably a vocal cord thing. Sostarted with the NT took her to
an ENT. They looked down andthey were like, her vocal cords
are fine, but we do see that shedoesn't have a lot of ability to
push air out, which may beimpacting her voice. So they
(12:47):
wanted us to go to a pulmonarydoctor, for which took a little
while, and in the meantime,between August and September,
when we were going to see thepulmonary doctor, she fell
twice, was kind of back toindependence. Was using a walker
still, because of the kneereplacement, but was working her
way towards a cane, and she waskind of hesitant to go out of
(13:09):
the house. And unfortunately,maybe fortunately, at this
point, my brother and Iencouraged her to get out and
start walking her neighborhoodthe way she used to, and that
first kind of loop around shegot back, and her legs just kind
of gave out on her, and shewasn't able to get up like
luckily she did not get injured,because she was able to lower
(13:30):
herself down. But it was prettysignificant that something else
was wrong with her legs at thispoint. I went down the path, got
her to the pulmonary doctor forthat appointment, and the
pulmonary doctor did hispulmonary test and listened to
her lungs and agreed that he wasseeing something that was not
allowing her to push air out tomake her voice strong, but he
(13:51):
actually noticed that her handswere getting to be a little bit
debilitated. Her muscles werewasting around her thumbs,
which, you know, I was like,
Natalie (14:02):
right now, and I'm like, I don't know that there
was muscles in my thumb likethat, but I'm like, right keep
going.
Unknown (14:08):
I look at it all the time now, you know. And I said
to him, does that have anythingto do with why we're here? And
he said, Well, I want you to goto a neurologist. So I was like,
Okay, do I have to worry abouther lungs at this point? And he
said, No, but you know, so hereferred us to a neurologist who
did the full exam, kind oflooked over her, was starting to
(14:31):
put some pieces together, andbasically paused and said, I
think you need a specialist. AndI said, Well, aren't you a
specialist? Like, isn't that whywe're here? Yeah. And he said,
No, I need you to go to a biggeruniversity hospital. I need you
to see a neuromuscularspecialist. Wow. And, you know,
I said, why? And he said, Idon't want to start looking into
(14:54):
things. I just know that this isnot going to be something that I
would handle. So. To send usdown to the University of Penn,
where we saw a which, you know,lessons learned in the
background, we saw a generalneuromuscular neurologist who
kind of repeated the same exam,decided that my mom needed to
(15:18):
have some testing done, and gaveus the idea that maybe this was
ALS, and kind of blew my mind. Ilooked at him and looked at my
mom, and, you know, my mom said,do you mean Lou Garrett's
disease like that is what youthink I have? And he said, Yes.
And she said, Oh, I don't havethat. Like nobody in my family
(15:40):
has that that's, that's, that'ssomething that you don't just
get that. And you know, he kindof paused and he said, let's
just do the testing and we'llcome
Natalie (15:48):
back to it. Hold on.
Hold that thought for just asecond. Maureen, because we need
to take a break. Yeah, so we'llbe right
Unknown (15:54):
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JJ (16:46):
All right, everybody, we are back, and we're right now at the
cusp of you have been through alot of testing, and finally, you
may have reached that pointwhere they give you the answer
to what's going on with yourmom. Lorraine, go ahead.
Unknown (17:00):
Yes. So we were called back after the testing was done,
and called in with the sameneuromuscular doctor who
confirmed that his thoughts werevery strongly ALS.
Unfortunately, he wasn't theperson that could actually
diagnose it. So we, yet again,were sent to an ALS specialist,
and it was a whole team ofdoctors that run a clinic
(17:23):
specifically for ALS. So we gotthere pretty quickly. We you
know, this all started with theneurologist in November,
December of 2020 and we saw theALS team in February of 21 and
at that time, my mom hadprogressed. A little bit a
(17:43):
little bit more things werehappening. She was definitely
falling more, definitelydependent on a walker. Her voice
was low, although she couldspeak clearly. She was eating
and, you know, drinking, all ofthat fine, but when we got to
the specialist, they confirmedthat it was als again. You know,
(18:04):
the two of us were sitting in aroom saying, like, how is this
possible? Like, what does thismean? Where are we going from
here? So we did get educated. Wewere actually brought back in
early March for a full teamevaluation, which is how als
clinics work, where you see thephysician, you see a nurse
practitioner, you see all of thespecialists, the respiratory
(18:27):
therapist, occupationaltherapist, the physical
therapist, therapist,nutritionist, they kind of pull
the whole team together for allof the systems to get impacted
with ALS
JJ (18:39):
So Maureen, I know that with that you had this meeting in
March. I know that your motherpasses with just like six months
later. So I have two questions.
Watching Natalie, she's like,Oh, you'd only get one. So my
question is, first of all, youhave other siblings, so are you
do you become? Which level of ofcaregiver? Are you a secondary,
(18:59):
or are you a primary? JJ,
Natalie (19:03):
is the primary? I can tell you yes. I always say
primary, preferred. Yes, that's
JJ (19:07):
true. So what position do you play? Because I think I
already know this answer. Andwere you put into that position?
Because you were an RN, becauseobviously you know everything
about ALS, so tell me that.
Unknown (19:21):
So that's interesting.
So I was the primary person,primary caregiver. I was her
health advocate in definitionfrom when my father passed, they
kind of named the financialperson and a health person
within our family. So my sistertook on the role of the
financial person, as she worksin a bank and has the finances,
you know, tight, I do not havefinances tight. Now that would
(19:44):
not have been a good role forme, you know, because of my my
nursing background, but also Ihelped to take care of my
father. My father had beendiagnosed with leukemia in 2015
and passed in 2016 So, you know,kind of took that role on there,
which then, you know, fell tojust who I was going to be for
(20:05):
my mother from the get go.
Natalie (20:09):
So you would say what it was assumed, like, you took
care of your dad. So of course,you're going to take care of
your mom. You go to all theappointments. You're the nurse.
You're qualified, right?
Unknown (20:19):
Absolutely and yes, yes, but a whole new world,
though, again, because I knewnothing of ALS,
JJ (20:24):
oh, that's so shocking, you know, because you're a nurse,
you should know everything.
Nurses knew everything I knowdid I matter? That's so
interesting, because we have somany family members who say they
have that medical background,but in actuality, they learn so
much. So I want to talk aboutbecause now this is about you. I
want to talk about the time withyour mom. And how was your time
spent with your mother? Do youfeel like that was a precious
(20:50):
time that you were able tospend, or was it more time that
you were very duty, driven whereyou were, task driven. Task
driven like I have to make sureMom is comfortable. How did you
balance the two? Did your familystep in? Were they there every
weekend, doing the care duties?
You have to let her answer thequestion, so you just keep on
(21:12):
asking notes on that. I know.
Sorry,
Unknown (21:16):
that's okay. I think it was complicated. I took the
role, and I would never have letanybody else have the role. I
mean, I I am that person. I amthat person who kind of takes
control in many situations andneeds to have that control. So I
think that just kind of fell inmy lap that way with my
siblings. What I did was I, youknow, that first day when we
(21:39):
came home, you know, I got themall on the phone with my mom in
the room, and we explained whatwas going on. I have to say my
brothers were a little bit lostin it. They were like, Okay,
well, that's fine. Like, youknow, she's 82 years old. Of
course, she's going to fall. Ofcourse, she's going to need a
walker. Of course, this maybeit's not actually that my sister
(22:00):
needed more details on the side,so she needed the phone call
afterwards to kind of sit andkind of walk her through it. I,
you know, offered Chuck, youknow, identified myself as the
person who would go to all ofher appointments with her. She
did progress fairly quickly, sowe needed to get some care in
(22:21):
the home. We had the toughconversation. She lived alone in
the homework that her my fatherhad purchased in their
retirement time period. So itwas one floor. It was easy
access. It was made wide forwheelchairs. It was like the
perfect place for her to be ableto stay, except that she lived
by herself. So she chose verystrongly that she was not
(22:45):
leaving her home. My fatherstayed at home and passed away
in the house, you know, in theirbedroom, and that is where she
wanted to be. She wanted to bein her home and not be moved
from there. None of my siblingsnor myself, our homes were going
to be conducive to having hermove in with us. We all have
steps. It would have, it wouldhave taken construction, mm, to
(23:07):
have her move in, and I knewthat we didn't have time for
construction. There was, therewas no point in trying to do
that. So we worked with heragain financially. My father was
kind of set her up for successof staying in the home. We were
able to hire some caregiversthrough a home care company, who
were able to come in and assistduring the daytime with her, you
(23:30):
know. And Initially it startedout with, like, four hours a
day, and then we went up toeight, and then we went up to 12
with my siblings, kind ofpopping in quickly, I identified
that my siblings and I needed aschedule. We needed we needed
direction, or they neededdirection, and they didn't need
to depend on me to be there, tokind of with them. I wanted them
(23:53):
to have some one independence oncaring for her, giving me a
break, but also time with herwithout other people around,
yeah, so we set up time, youknow, they each picked an
evening, and they would show upon their day at like five
o'clock and stay with her untilshe went to bed. Once she was in
bed, she was generally okay. Sheyou know, we had a we had to
(24:17):
have lots of talks about notgetting up after we put her in
bed, you know, staying in bed.
We put a commode next to herbedside, right so she could use
that she had multiple fallsafter people left the house for
which I was her call. So, youknow, my husband and I, or my
sister and I would, I would getthe call, and I would deploy
whoever was needed to get upthere to help get her picked up.
Luckily, all of her fallsresulted in no injuries, because
(24:38):
she knew it was happening, soshe had control. It was like a
controlled fall, where she wouldget to the ground, you know, and
safely be there. So over time,the things that I did were
really organize her care and tryto take that step back when my.
Siblings were there so that Icould have time with my family,
(25:02):
continue that life. I wasworking full time. So, you know,
I was going to work every day.
The difficult part for me was ifsomething happened or if my mom
had a question, she called me,oh, she didn't want to talk to
anybody else. She wanted me. Ofcourse, she did.
Natalie (25:19):
Our mom does the same thing with JJ, like the super
last call. You know, I'm goingto pause you for just a second
because I'm going to go over toMolly. Hey, Molly, come back to
us. Okay, awesome. Okay, soMolly, it's interesting, because
we've just heard your mom talkabout kind of everything that's
going on. And you're in collegeat this point, aren't you? I
(25:45):
Yeah, or just graduated. I thinkyou're in your
Unknown (25:48):
right after college.
Yeah, I'm not that young. Yes, Iwas, I was right after
Natalie (25:52):
Yeah, so you're still a puppy, but so this was after
college, and you're watchingthis. So this is a perspective
we've never had before. Tell usa little bit about observing and
how you supported your mom,because I think that you were a
caregiver to the caregiver too,because I feel like you and your
(26:13):
mom have a pretty closerelationship. Yeah, yes,
Unknown (26:16):
we try. And to be fair, it's not really just me,
especially with my grandmother,all of our cousins. So all of my
cousins and my siblings, we allkind of did the same thing in
that rotation that my mommentioned with schedules, either
if somebody you know, therewould always there's four of
them, so there's three othernights kind of to care. And
we're all adults, so I'm one ofthe youngest of our cousins. So
(26:37):
everybody else you know is olderthan me at this point, and if
not, my brother and I wereyounger ones, but we were local
enough, everybody's local. Soeverybody did a really good job
of popping in and supportingtheir own parent. But also, I
think, making sure that, youknow, if we were free, we were
offering, even if it was notsuper convenient, you know, why
don't I go over and hang out?
You can go home and, you know,take a shower, do whatever you
(27:01):
need to do with your night, tohang with her. And we all loved
it, right? Like it was never aduty. I think it sounds more
like it was a schedule and aduty. And I think every single
one of us wanted to be around mygrandmother all the time. She
was, you know, our best friendand our closest confidant a lot
of times. So yeah, but yeah, Ithink for my mom, I think I was
watching her not burn out,really, because I don't think my
(27:23):
mom has the ability to burn out,but I think in a way where I
definitely noticed that she was,unfortunately not getting a
mother daughter relationship anylonger. We had a lot of tough
conversations about how shedeserved to have time that was
not in a wearing her caregiverhat with my grandmother,
(27:43):
especially towards the end ofher time where she was on
hospice and much sicker, and itwas, you know, my mom and myself
there a lot of the time aroundthe clock, and just reminding
her that, you know, she deservesthe most kind of out of
everybody at this point toreally Get that that time with
my grandmother before shepasses. And I think that was
kind of where I really startedto have some harder
(28:06):
conversations and really say,like, I know that you're have
this task list, but let me takesome of those things. I'll get
the morphine prepared, thingslike that that, you know, were
hard for her to let go of, butat the same time, you know, I
think, reminded her that shedeserved to also just be a child
who was losing her parent, notjust, you know the nurse who was
caring for, you know a woman whohad ALS,
JJ (28:29):
go ahead. Jay, so have a question for Maureen, and then
we are going to go back, becausethere's a lot with Molly.
Maureen, I want you to tell methat what, what did it mean for
you, for Molly to say you got tostop, take this time with your
mom, as your mom, if you couldsay something to Molly, what
would it be?
Unknown (28:50):
It would it was an absolute wonderful idea. It was
very difficult for me, as Mollyled to, you know, I've already
said that I'm the controller,I'm the caregiver, I'm the
Kristen, and I'm Molly's mom, soI hesitated on her needing to be
present for the things that weregoing to happen with my mom. But
(29:10):
Molly's just as headstrong as Iam, and very much, you know,
said, but this is what we'redoing. I'm staying here. She,
she went home to her apartmentin Philly, and she packed her
bag up and came back and thensent me home to pack my bag,
because I had been there for acouple of days without, you
know, anything. And it meant theworld to me and to have that
(29:31):
time to know that when I was inthe bedroom with my mom,
spending that time talking toher, you know, being her
daughter, recognizing that theend was coming. She was no
longer able to speak to us atthis point, but definitely was
awake and alert and able tocommunicate through, you know,
signs, you know, squeezing thehand, looking around, those
(29:53):
things that time, I would havenever gotten back if Molly
didn't step in at that at thatmoment, it was different. Took
off because my siblings werethere. But my siblings very much
said, go for it, Molly, like yougot this, you can do it, because
they did not want to be in thatsituation of taking over the
caregiving part of
JJ (30:13):
it. Well, it sounds like you guys are the perfect team. So
Matt, I'm going to jump to breaka little bit early, okay? And
the reason is because I knowthat Maureen, your your brother,
has also been diagnosed withALS, and he's younger, he, I
think he's in his 60s, and youare kind of being a caregiver
(30:35):
for a caregiver again, becausehe's married, but with that, is
that a genetic thing? You know,he's got that. But there's some
genetic testing, or there's sometesting that's gone on that
Molly has found out. And sowe're going to talk to Molly,
sure. All right, we'll be rightback care scout.
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JJ (31:41):
Okay, guys and bringing us back in Natalie.
Natalie (31:44):
Oh, I didn't, I thought that you had a question for
Molly. Well, I mean Mollybringing back 400 quite well, I
know. So okay, so we're comingback. And so I kind of want to
wrap up the the piece with yourmom and I, it sounds to me, what
I hear saying Maureen, is thatyou really were able to have
(32:05):
that closure and be a daughterand not and really pull back on
what I think most people feel ofas a concurrent role, but
typically the caregiver leansheavier into it, and I think
that's such a blessing thatMolly was able to do that as
well as other family members,but I know Molly, and I think
you're blessed because of thepositions that you went into.
(32:28):
And so I think there waseducation that you knew you
were, you were smarter, as Ilike to say, smarter than the
average bear. And so you knowMolly, when did you know I want
to go into the genetic testing?
That's the part that I didn'trealize about ALS and Molly. I
know that we talked about it onour phone call beforehand, and
you shared with me so muchinformation about that, but that
also influenced your decisionmaking earlier in your 20s, as
(32:53):
you were thinking, as you foundout about like this could be
genetic, and I need to thinkabout this moving forward, and
how do I choose to have kids andand how is this going to affect
my spouse? And how do I have aconversation? So Molly, do you
want to jump into that and startchatting about that?
Unknown (33:12):
Yes, I will try to give the brief version. We have the
very unique experience of havinga pattern of ALS on both sides
of our family, which issomething that I think, now that
I've been exposed to the ALSworld lot, I've met a lot of you
know, professionals in the ALSworld, and most of them have
never heard of that happening.
So it's very unique. And Ialways say we should play the
(33:34):
lottery more often, because,right, you know, it's the odds
are really strong. But yes, wehave the pattern from my
grandmother on my mom's side andher brother. Now there's been no
genetic mutation found. Myuncle's had every test possible,
and there is many of them to seeif there's any connection
between my grandmother's alsdiagnosis and his. And so far,
nothing has been identified.
(33:59):
There's a lot of other factorsthat really can play into that
als has, you know, an unknownreason why people get it most of
the time, spontaneous ALS isreally the more common.
Familial. ALS is a much smallerpercentage. It's, I think they
say 10% I think it's probablynow up to, like 15 to 20%
realistically, there's manygenes that are identified, but
(34:20):
there are still families likeours on my mom's side where, you
know, there is a pattern, butthey don't really know why. And
I think a lot of things thatthey think about are like
environmental factors. My uncleis a union worker. He was a
steam fitter forever. So, youknow, there's definitely
different things that can affectI know you and I, Natalie talked
(34:41):
about how veterans have a higherrate of diagnoses of ALS as
well. So there's a lot of thingsoutside of genetic factors, but
on my father's side of thefamily, we actually ended up
having a diagnosis of a c9mutation, which is an open
reading frame. Ation on yourninth chromosome. And that
(35:03):
happened, I guess, with myuncle, I want to say, like 2017
my mom can probably confirmabout in there. So we did learn
of ALS and my dad's head tofamily prior to my grandmother's
diagnosis, okay, but it kind ofwas almost felt like an odd
coincidence. You know, we reallynever thought too hard about it,
(35:23):
other than, well, that's reallystrange. That probably doesn't
happen often. And we were at thesame clinic with my grandmother
that my uncle on my father'sside had used, and I think they
already kind of knew my familywell enough, because my dad's
side of the family had alreadybeen connected with them. So
that was really a blessing forus, I think, in the long run,
because we were familiar withhow the clinic works and the
(35:44):
people in it and everything butmy dad's side of the family, my
uncle found out about hisgenetic mutation just because
there was a another brother oftheirs who had, I think we don't
really know the officialdiagnosis per se, but Some form
of a dementia that, you know,led to his passing many years
(36:04):
before that. You know, theywould have never really
connected it, had they not goneover that family history with my
uncle, who had ALS. And fromthere, my dad and his siblings
were tested for a geneticmutation. Everybody kind of had
their own choice, which isreally how the genetic
counselors recommend that you doit, you know, there's no
pressure to find out about yourgenetic mutation. My father's
(36:25):
was positive and his othersiblings were negative, which
was, I think, a huge blessing aswell. You know, I mean,
unfortunate for my father, ofcourse, but his siblings that
were still, that are stillliving, were all negative. So we
only had that one person who wasreally continuing from their
siblings, and then from there,my sister and I chose to be
tested for the same geneticmutation. I was positive. I
(36:48):
won't share my sister's, youknow, because that's, you know,
her choice. But, and my brotherhas not been tested yet, which,
again, you know, we support himwith that, because it's really a
very personal decision for everyperson who's in that position,
because it can have a lot ofeffects. Of effects on your
life,
Natalie (37:04):
yeah, you know. And we have a friend of ours who we
love, Jordan peace had there wasa genetic mutation for cancer,
and that passed down from hisgrandmother to his mother, and
he chose to be tested, and heknows that he's positive as
well. And so I guess my questionto you is, because this is
(37:25):
really specific about yourchoice to be tested, and then
how did that affect yourdecision making moving forward?
Unknown (37:34):
Yes, I feel like I'm just somebody who has to know
everything. So I very muchregardless of all the factors I
think it would have chosen to betested. I definitely don't think
that might have been a healthydecision all the time, but it's
worked out in the best for me.
So I just really knew that I wasin a really optimal position
where, you know, I was young, Iwas, you know, not in a place
(37:57):
where I was going to be, youknow, with my long term my now
spouse, at the time, I was kindof like, young single dating had
a lot of privilege in knowingthe information when I did to
make decisions for my long termfuture, so I really took
advantage of that with that Ihave now, why we say I always
laugh. I was like, it's kind ofworse than having, like, a
(38:20):
permanent STD when you're in thedating world too, because I'm
like, I feel like I have toreveal this giant secret about a
terminal illness, just to know,you know, somebody is a good
person and not going to leave meif I'm looking for a husband.
So, you know, luckily, I foundhim, but I was very lucky with
that, and we have worked to workthrough a fertility clinic in
freezing embryos and testingthem, testing and then freezing
(38:44):
embryos to use in our futurechildren to eliminate the
genetic mutation. And thatreally came a lot from my sister
started doing a similar pathjust with she was at a different
time when we were getting ourgenetic testing done. She had
just gotten married, and theywere really ready to start
(39:05):
having children, and so that waskind of the driving factor for
her. And she had done a lot ofresearch about, you know,
depending on what that resultis, you know, how would that
affect their journey? And so shehad kind of kicked that off. And
then once I was kind of in aposition where I was thinking
about that, you know, I was ableto really kind of dive right in
and connect with that's
JJ (39:25):
so interesting that you can make that decision, though, to
go ahead freeze those eggs, andpeople don't know that, that if
you they may not know that youcan, you can actually do that
testing with that. You can dothat testing prior to so that's
very interesting
Natalie (39:38):
to me. So what was the conversation? This is different.
But, you know, in you had a careconversation with your
significant other, yourboyfriend at the time, and you
guys are talking about marriage.
I mean, you're exactly right,you know, the permanent STD
versus, hey, I'm going to havethis pretty I'm very likely to
have this pretty dastardlything, and it's going. Be really
(39:59):
hard, and it's going to be, it'sgoing to be hard, it's going to
be hard for me, but it's goingto put you into a direct
caregiver position. It reallydoes help you feel like you
found your lobster when they'relike, Yeah, I don't I, I'm here
with you. What was thatconversation like? And how have
you all planned, thinkingforward to the future beyond
having children.
Unknown (40:22):
Yeah, I think it was awkward, for sure. It was not
normal for you know, I was 25probably, or 26 this
conversation. And for me, it waslike I was at a point where I
was like, Okay, I'm probablygoing to say I love you, and I
think I want to, like, marry youat some point. And now I have to
really reveal this giant secretbefore, because I have no
(40:43):
interest in moving forward withsomebody who you know isn't able
to handle that, or who I don'tperceive as being able to, yeah,
appropriately handle that orsupport me through it. So I was
super lucky, but yeah, I justhad a really blunt which is kind
of how I operate London,conversation about like, this is
a real thing, and this is whatwill happen. And I know that
(41:06):
it's not necessarily 100% forme, but I I speak of it like
that so that there's no, youknow, no shock to reality if and
when it does happen. So, youknow, I shared with him, you
know, the research that I'vedone and what it means, and you
know how detrimental this can bein the future, and what that
would mean for us. And he's justthe nicest person in the world.
(41:27):
And he's a very strong, very,even healed very, I don't know
just how to describe him, buthe's like, not like me at all.
I'm definitely we balance eachother out quite a bit with that.
So he definitely is somebodywho, you know, knew right away
that it didn't matter what Iwould have. Of course, he would
support me through it. And, youknow, as we very early on talk
(41:47):
about marriage, which was also,again, not really my, my MO,
previously to having this, youknow, he was really focused on,
you know, well, if we aretalking about getting married,
it's like through sickness andhealth and all the things. So
that was very relieving to hear,because it almost unlocked, you
know, the door into really beingvulnerable and kind of moving
(42:09):
our relationship to the nextlevel in terms of, you know, a
really long term strongrelationship, rather than just
dating at 25 or 26 but yeah, andthen from there, I think things
that we really now, especiallyafter our wedding, was just in
September. So a lot of thingsthat we've already started
thinking about is, you know,where we want to end up long
(42:29):
term, for me, that means beingnear some kind of, you know,
good health care facility. Ithink, I think that growing up
in Philadelphia was a privilegefor that and, of course, also,
just to mention, I think isimportant that, like we grew up,
we are privileged in a lot ofways when it comes to our access
to health care. So not justbeing in Philadelphia, but
(42:51):
there's many sides toPhiladelphia, and we were very
lucky to be in the working classthat we were, and the color of
our skin played a big role, ofcourse, in our education and
what led us to be able to be inthe positions of being a nurse,
and you know, the person that Iam in my position to have not
only knowledge, but access andsupport around us in terms of
just all the privilege thatcomes with you know who you are
(43:13):
and where you are. So I thinkthat's really important to note
that we've had probably a mucheasier time, even if it sounds
like a challenging time thatother people may have if they
were going through what we havewith, you know, a journey with
ALS or the diagnosis, andespecially access to really good
health care, like a geneticcounselor who can counsel you
through all these things andtalk to you about fertility and
(43:36):
things like that. So it's been abig privilege to have that, but
also to be able to then sharethat with you know, my sister
and I, with our husbands andwith our other family members
who you know are reallyinterested in learning and
getting involved, our friendsand we've taken a lot of steps
to plan for being around like amajor healthcare facility,
probably on the East Coast,because I know that. I just know
(43:57):
where certain clinics are,certain doctors that I would
trust with my journey that I'mon. And then on top of that, I
think, like financiallyplanning, yeah, oh yeah, a lot,
you know, making sure we have anaccount, a savings account that
specifically is for healthcareand emergency funds for the
future and things like that. Myhusband's extremely savvy with,
(44:19):
you know, knowing how tonavigate the financial world and
long term planning and things,which, again, has been huge for
me, because I was like, I wouldbe, you know, on vacation every
day if I
JJ (44:30):
so, it sounds like, it sounds it sounds like you've got
a lot of planning in there. Youknow, that is kind of key to
what your future is, but you'reoptimistic So, but it also
sounds like you have a lot ofadvocacy in your heart. Do I
hear that when you talk aboutyour privilege, but also color
of skin, things like that? Itseems like there's a lot of
(44:51):
advocacy there. And what is yourkind of look at the future? I
mean, are you out there becauseof your field, or you're like,
we are going to find a cure forthis? Like. You, is that what
you see in your future?
Unknown (45:02):
Yeah, I mean, I would definitely love to continue to
be a part of that. I've reallytrained to take a deeper dive
into different advocacy groups.
My mom and I are both peermentors through I am ALS, which
is who connected us with youall, and then just kind of
making sure that I'm keeping upto date with. You know, what's
happening in terms of, you know,different policies being passed,
(45:23):
being involved with, you know,advocating with legislature,
from writing letters and justbeing up to date on joining
meetings and just showingsupport for any changes that are
trying to be made. I'm aclinical study patient in a
couple of different researches,research studies that are being
done. I go to the NIH once ayear for some couple days worth
of appointments to make sure I'mkind of doing my part in
(45:47):
contributing to the researchthat's happening. And then
working with a couple ofdifferent a pharmaceutical
company that's got a lot of goodwork going on, just working on
like an advisory board withthem, so that they keep the kind
of mindset of patients andcaregivers in their mind when
they're planning their clinicaltrial out. Just kind of trying
to dive into all the things thatI can. And now recently, I've
(46:10):
been kind of connecting with afew younger women that I was a
panelist on University of Penn'swebinar for familial ALS. To
they kind of just do, like aupdate on research annually, and
have different panelists come onand just kind of share their
experience answer questions. Andthat's led to a lot of young
women who are in the sameposition as I am, where they
(46:32):
either found out that theirparent has this or one of the
other genetic mutations for ALSor FTD, and then, you know what
that means for them, kind ofhelping them understand what
happens if you have a positiveresult, what that can mean, how
it can affect your long terminsurance, your health, all the
things that can kind of play arole. So that's been really nice
(46:53):
to kind of connect with otheryounger women and hopefully
guide them in a way that theycan make, you know, informed
decisions for themselves aboutwhat it means for their future
if they were to be tested, orwhat their test results mean.
Well,
Natalie (47:06):
and I know that we're at our time. I mean, we're not
even at sister questions, andthis is what happens. But I knew
this was going to happen, and sowe're going to go over a little
bit for folks, because I thinkthere's some pieces that I want
to make sure and go back to yourmom. Hey, Maureen, still there,
still here. And I love that.
We're like, she's like, I'mstill here. I'm still standing.
I know I was gonna I knew I wasgonna sing in this episode at
(47:27):
some point. So there's so manygreat things that you ladies are
doing. I'm really glad that youtalked about peer support. And I
know Maureen, you're doing peersupport. And so I guess my
question is going to be, tell mea little bit about how you doing
peer support has really helpedyou. Because I know, you know,
you may have thought, I'm notsure about this. So Maureen, can
(47:48):
you tell me about yourexperience with doing peer
support for others?
Unknown (47:54):
Absolutely. You know, Molly reached out to me a little
while back and said, I think youwould really do well with this.
Connected me with I m, a, l, s,I did the training and and got
paired with a woman whoabsolutely is living my life as
I did with my mom. Her situationis, is almost parallel with
(48:15):
mine. Wow. It has allowed me tonot just share like, the
practices that I was able to do,and kind of look back on, you
know, what worked for me, whatdidn't, to kind of share with
her, to allow her this, thiswoman, to kind of look at the
options on, how do you bestprepare for this? You know? How
do you communicate? How do youwork with your siblings? How do
(48:37):
you work with the healthcarefield? What's available out
there? I've kind of been able tolay that out for for her and her
family, but it has also allowedsome healing with me. It has
allowed me to kind of, you know,get away from the fact that my
mom passed from ALS, and lookat, you know, that time that was
spent with her before herdiagnosis, during her diagnosis,
(49:01):
and then absolutely that lastweek when Molly jumped in, and,
you know, and I say, jumped in,you know, as Molly said, her and
her cousins were there allalong. They were along for the
ride, right? They were therehelping. But, you know, towards
the end there, it really hasallowed me to kind of look at
that bigger picture and seethat, you know, there were rough
times. And there were times thatif I could go back and change
(49:22):
something, I may but, butgenerally, I had that time with
my mom as both the caregiver,which is what she wanted, but
also the daughter, and watchedher, you know, become a great
grandmother again. Surely aftermy mom passed, my first
granddaughter was born, so shedidn't get to meet her, but she
(49:43):
was very active in thatpregnancy, and and knowing that,
you know, we were having a baby,and what that would mean, and
I've been able to kind of put inbe the grandmother my mother
was. I'll never, I'll nevermatch who my mother was as a
grandmother, but, but, you know,definitely have learned a lot.
Lot,
Natalie (50:01):
yeah.
JJ (50:02):
Jay question, my question would be advice that you would
give someone that has a childthat was or it has been
diagnosed, or they found thatmutation that could possibly,
that could possibly lead to thistype of terminal illness, advice
that you would give a parent,
Unknown (50:24):
from a mom to a mom perspective, I would say, you
know, support them. Be there,listen to them. Educate
yourself. Molly got quicklyeducated, and was educated on
this c9 mutation, much deeperthan I was at the beginning. She
really helped me understand, youknow, what I needed to learn,
(50:47):
but really to be there, be openand be open to what each of the
children want or don't want. Youknow, as Molly said, her and her
sister chose to be tested. Herbrother has not yet chosen that,
but, but we all need to supporteach other, as it is. My husband
is, you know, does have thegenetic mutation. He's at the
prime age where his brotherstarted with symptoms, and
(51:10):
again, it was very fast movingals that his brother passed
with. So supporting him. He'sinvolved in the research that
Molly is, but just throughanother hospital. So kind of
staying behind that and justbeing open to that and listen
and become educated in thisworld of, you know, the unknown.
I mean, this was something wedid not know anything about
(51:33):
prior to these, thesesituations.
Natalie (51:35):
And I'm going to end it with Molly too. Molly, any
advice that you would give tosomeone, any advice from a
caregiving standpoint that youwould that you would offer,
Unknown (51:51):
I think learning how to be an advocate in whatever way
that your loved one needs isreally important. And for us,
obviously, we have a fewdifferent people who we need to
do that for. And I think meetingwhichever person it is, you
know, where they're at withtheir diagnosis is really
important, but learning how youcan be a partner and a pair with
(52:14):
them in it, but remember thatit's their experience, and you
can be there to support them andlearn how to be an advocate by
maybe getting a differentperspective that, you know, it's
hard for somebody who has adiagnosis to understand, but,
you know, let them lead the wayand just learn ways that you can
support them and be involved.
But I think my mom and I haveboth learned especially the
(52:37):
difference with my grandmotherand my uncle, and then, you
know, thinking about our ownpersonalities, I think in the
future of every journey is goingto be extremely different and
look very different. And there'sways to support and advocate for
each different one. And I thinkthat's the most powerful thing
that you can really do forsomebody who has a diagnosis
like ALS, or really like any,you know, terminal or long term
(53:01):
chronic illness.
Natalie (53:05):
So I will say this, we always ask the last question,
and it is, what is your favoriteguilty pleasure? And the reason
I say that is because it'sreally how to use self care.
What is the thing that you dojust for yourself? Molly, and
then Maureen, I'm going to comeback to you. What's the thing
that you do just for yourselfthat really is like, Oh, I love
that. That's your self care.
That's that's how you reallyrespect, love and care for
(53:27):
yourself.
Unknown (53:30):
So the thing about having a terminal genetic
mutation is that I do many ofthose things, and then I get to
blame it on the fact that I haveALS in my young life, and then
that's how I kind of, you know,I use the ALS card often, or the
genetic mutation card often, butI do, I do get my my monthly
facials that has been, oh, Isupport that of my care. And I
(53:54):
take a lot of trips. I traveloften. I love that very often.
And that's where I spend most ofmy money. Oh,
Natalie (54:01):
I love it. I love it.
Well, it helps. I mean, youknow, at some point maybe you
all have a plane, since yourhusband is conveniently a pilot,
I will always say thank you foryour service and to your husband
for his service as well. And somuch love to you guys, both and
Maureen, tell me. Tell me aboutyour self care. How do you take
care of Maureen? What's yourfavorite thing that you do, just
for yourself,
Unknown (54:21):
just for myself, something I picked up from my
mother that I would have neverguessed, that I would ever have
any pleasure in, but getting mynails done on a regular basis,
getting aman, Oh, that girl, that
Natalie (54:30):
is the truth. And I look at my nails and I'm like,
Oh Lord,
Unknown (54:35):
not something I would have ever paid for. It took the
time for or invested in. Butwhen my mother did get sick and
required some, some, you know,assistance to get to those
places, the one place that sheneeded to be was to get her
nails done. And she actually gother nails done on a Thursday and
on Saturday, is when she tookher drastic decline. So, you
(54:57):
know, at this point, I make surethat my nails are. Done on a
regular basis, and it reallydoes, you know, help you feel
better.
Natalie (55:05):
Oh, that.
JJ (55:06):
I love that. Let me just say that it has been an honor and a
pleasure to meet you guys. Ilook at your past experiences,
and they're so beneficial toeverybody. You're present and
what you're doing, youradvocacy, your involvement in
all these tests are amazing andyour future, because I know that
it's just going to be amazing,all of the things that you do,
(55:29):
regardless of diagnosis, I justlive in a full life. It's it's
all good, and I just thank you,because you guys have been a
blessing. Oh, I love it.
Natalie (55:38):
A full life. Guys, thank you so much for being with
us and guys, thank you forjoining us on this episode, and
until we confess again, we willsee you next time. Bye. Bye.
Well, friends, that's a wrap onthis week's confession. Thanks
so much for listening in to thepodcast. But before you go,
please take a moment to leave usa review and tell your friends
(56:01):
about the confession show. Don'tforget visit our website to sign
up for our newsletter, as wellas connect with us on Facebook,
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the video recording of all ofour episodes on the confessions
website and our YouTube Channel.
We'll see you next Tuesday, whenwe come together to confess
(56:21):
again, Till then, take care ofyou. Okay, let's talk
disclaimers. We are not medicalprofessionals and are not
providing any medical advice. Ifyou have medical questions, we
recommend that you talk with amedical professional of your
choice. As always, my sistersand I, at confessions of our
(56:42):
reluctant caregiver have takencare in selecting the speakers,
but the opinions of our speakersare theirs alone. The views and
opinions stated in this show aresolely those of the contributors
and not necessarily those of ourdistributors or hosting company.
This podcast is copyrighted, andno part can be reproduced
without the express writtenconsent of the sisterhood of
(57:06):
care LLC, thank you forlistening to The Confessions of
a reluctant caregiver podcast.
You.
Hey guys, it's your favorite sisters with the
(00:02):
Confessions of a reluctantcaregiver. Podcast. On the show,
you'll hear caregiversconfessing the good, the bad and
the completely unexpected.
You're guaranteed to relate beinspired. Leave with helpful
tips and resources and, ofcourse, laugh. Now let's jump
right in to today's guestconfession. Hey, Jay, hey,
Natalie, how are you doing this
JJ (00:27):
morning? You know, I got some coffee and I'm feeling
great. Yeah, I've got water,
Natalie (00:32):
and I realized before we started I needed to pee.
JJ (00:35):
That's way too much for us to start. The audience doesn't
want to hear that. Yeah,
Natalie (00:38):
and I was going to sing this morning, but since we've
got two guests on and there's somuch good stuff, I'm not going
to sing, although I was thinkingabout it, okay, well, I'm going
to get started, because started,this is going to be such a good
show. And I'm very excited. Andwe've got a mother daughter, and
we've never had a motherdaughter combo. We
JJ (00:56):
absolutely have not. So I want to tell you about who we
have, and everybody laughs,because I have to look down and
look really closely because Idon't have my glasses on. So if
you're listening, just know I'mlooking down because I'm not
wearing my glasses. So let metell you guys who we have today.
Today we have with us, MollyMcCloskey. I always mess that
up. Molly, sorry. Molly. Molly.
McCloskey. Healy and MaureenMcCloskey. And first of all, I'd
(01:19):
like to say they are a motherand daughter team. Yeah, I love
teams. I love teams. They havebeen caregivers. They are
caregivers. They will becaregivers, and they will need
to be cared for. I say they arethe reason why Rosalynn Carter,
that's that's why she feared.
Statement, they are that.
Statement, yeah, both havehealthcare backgrounds, and I
(01:42):
think that's a path that theywere both destined and chose to
take. Matt, today, we're goingto talk about ALS, we're going
to talk about Alzheimer's. We'regoing to talk about frontal,
frontal, temporal dementia, andeven the recognition that you
are predestined to become, tobecome a you predestined to
(02:05):
those because of a gene that amutated gene that is actually
already recognized because ofsome testing. So I want to
welcome today, MaureenMcCloskey, good morning here.
Thank you. And Molly,
Unknown (02:27):
Hi, good morning everybody.
JJ (02:29):
Hi, good morning.
Natalie (02:30):
So excited to have you guys. So I know this is the
first time we're having two. Youknow, we did have two people. It
was a husband and wife, but theywere in the same frame, yeah.
And so this is there in we'vegot one person in Philadelphia,
Marines in Philadelphia. Andthen Molly, you're in Kansas
City, right? Yes. Okay, sonormally we always JJ and I were
(02:53):
talking about to make sure thatwe really got the story out.
Normally, I always talk about,tell us, you know, from the
beginning, tell us aboutyourself, and I'm going to
actually ask both of you to tellus a little bit about yourself,
and I'm going to start withMaureen if you want to tell us a
little bit about your backgroundgrowing up, and a little bit
about your family. Because thisI know that your care started
(03:17):
with your mom, but care haspermeated throughout the entire
family. So Maureen, and thenMolly, we'll jump to you after
we chat with your mom. SoMaureen, you're on the hot seat.
So tell us a little bit aboutyour background, where you're
from, your sibs, all that good
Unknown (03:37):
stuff. Very good. As I said, happy to be here. I am one
of four children. I was born andraised in Philadelphia.
Actually, I live in the home Ibought the home that I was
raised in from my parents about23 years ago at this point. So
my parents are both deceased atthis time. I am the youngest of
(04:01):
four children. I have an oldersister and two older brothers. I
am married now, and have threewonderful children and one
granddaughter. I'm a nurse, bybackground, I'm a pediatric
nurse, and have worked at thesame facility for 38 years. Wow.
Back in 2020 I switched mycareer path a little bit and
(04:26):
became an infectionpreventionist at the same
institution. So I've been aninfection preventionist, still
holding my nursing license andpracticing as a nurse, but also
now certified in infectioncontrol since 20 since 2020
unfortunately, that happenedduring the pandemic, when they
were in highest need. And I tookthis little career path just to
(04:49):
help out for a little while, butreally found the liking to it
better, work, life balance and awhole kind of a different world
to be a part of, and liked it.
So took a four. Time position atthat time.
Natalie (05:02):
Do you think that that switch in positions potentially
helped you with caring for yourmom?
Unknown (05:09):
So it's interesting, it actually happened around the
same time. So by this switchhappened in 2020, just as my mom
was. I guess this positionstarted before my mom started
with symptoms, but shortly afterI took the position, my mother
did have surgery, and thensymptoms of ALS started to
(05:32):
appear at that time. And yes, Ido think that this has helped
me, because it's a much moreflexible position. I am able to
work from home. My days off canbe a little bit more in the
moment than when I was at thebedside, doing nursing where
things needed to be a little bitmore scheduled out
Natalie (05:49):
that's true.
JJ (05:50):
Shows how important that employers
Natalie (05:52):
are. I'm telling you right now, employers and
flexibility and caregiving, Ithink that's such a such a big
thing that we always want tovisit to say out loud, because,
you know, seven out of 10caregivers also work full time
or part time, and they not onlyneed to do that, want to do that
as well. Rather, it's financialreasons, just, honestly, a
(06:15):
sanity check. And so, okay,let's switch over to Molly.
JJ (06:19):
Molly,
Unknown (06:22):
Hi, yes, you have me here. I am 30 years old, and
recently got married. I guessI'm going a little bit
backwards, but I'm fromPhiladelphia. Was born and
raised there for the first 28years of my life, until a couple
years ago, my now husband is anAir Force pilot, so we are out
here in Kansas City now forthat, but I grew up with my two
(06:45):
siblings, my younger brother, myolder sister, my parents and a
very large, very large family,very loving large family, which
was, you know, a greatexperience for me, with cousins
and aunts and uncles, alwaysaround my grandparents. So we're
all very close. And grew up andwent to school in Philadelphia.
I went to high school right inCenter City of Philadelphia, and
(07:06):
then went to Temple Universityfor my undergrad degree, and
graduated from there and alsocommissioned as a officer in the
Army through the Army ROTCprogram at Temple. So now I
currently work inpharmaceuticals, but as a case
manager for a rare disease drug,a couple of rare disease drugs
for neuromuscular rare diseasewas doing that previously with
(07:30):
the ALS community, and nowworking with the myasthenia
gravis and neuromyelitis opticaspectrum disorder diagnoses. So
that is kind of where I'm atnow, but I spent a couple of
years trying to find my way alittle bit, and was in the
healthcare setting. I was at thesame hospital as my mom for a
couple of years, which was sofun, and then at the VA for a
(07:51):
little while, and as an organtransplant coordinator, so I've
kind of had a little bit of ataste of everything when it
comes to case management in thehealthcare world, and then
switched over to pharmaceuticalsin the last like five years or
so.
JJ (08:03):
So that's very interesting.
I will just ask if your past atthe time, I know that you were
in college, and you've come upto that 30, which is very young.
She are just a puppy. She's apuppy. Have some of your
experience as experiences ascaregivers, and then knowing and
being familiar with ALS andAlzheimer's and other diseases.
(08:27):
Have those led you down the paththat you choose to go Molly? Has
that kind of given you someinsight?
Unknown (08:37):
Yes. So actually, up until my grandmother had been
diagnosed, and then passive ALS,I was still in the healthcare
side of the world of, you know,healthcare and in, like, a
clinical setting. And I thinkshe passed in October of 2021,
and in about December. So maybe,like, eight weeks after that, I
(08:59):
stumbled across a company thatwas looking for case managers in
the pharmaceutical world for adrug that was going to be coming
to market for ALS, actually. Soit was a little bit of like a,
oh my gosh, did she just plopthis down into my lap? You know,
I was not really looking for ajob, but had, you know, I was
actually creating a LinkedIn forthe first time because I hadn't
(09:19):
had one, and right in front ofme was this job posting. Of, you
know, we are looking for peoplewho can help with patients
gaining access to new therapy,but want people to be familiar
with the disease that is ALS,because a lot of our role was
kind of helping people guidethrough that newly diagnosed
period and getting access to newtherapy. So I really felt like
(09:41):
fate a little bit. And Iabsolutely loved my time at the
first company that I worked for,and then have since moved on to
another company, and really kindof continued on that path. And I
definitely see myself goingfurther, you know, in that
direction, and a little bit morein the world of like advocacy
and patient access to. Andhelping people with navigating
(10:01):
the rare diseases that theyhave. So it's definitely been a
large part of my own careerjourney to just have been
exposed to ALS through myfamily. Yeah,
Natalie (10:09):
very interesting. So I want to Maureen, I want to jump
back to you. This is much morefun. This is like this. Go back
on the other episode of Maureen.
Hey, Maureen. I want to go aheadand let's, let's talk about your
mother and ALS and thatdiagnosis, and is this, I'd like
to get a little bit morebackground about when she was
(10:31):
diagnosed. But did the familyknow that this is a genetic
issue? And let's talk about whatcare was like, because I know,
Molly, you stepped in as wellintermittently, and then
especially towards the end ofreally helping to support your
mom. And we'll come back to you.
So Maureen, let's jump back onwith you and give us, give us
(10:54):
some background on that and tellus kind of what happened. Sure,
Unknown (10:58):
it was difficult to kind of figure out what was
going on with my mom. She hadvery healthy, 82 years old, very
independent. My father hadpassed away in 2016 and she kind
of found her way without him,with the support of the family.
But in 2020 she was very activeand started to have some
(11:18):
difficulty with moving around,kind of being as independent as
she wanted. She was bowling, shewas going to aerobics, she would
go swimming, she was going outwith her friends. She she had a
really close community. On topof having family close by
keeping her very busy, we hadtaken her to an orthopedic
(11:39):
because her right knee was kindof really bothering her, which
she had had trouble before. Withthat, they actually did a knee
replacement in June of 2020, forwhich she recovered very well
from I moved in with her for acouple of weeks at that time to
get her through, you know, gether back to being independent.
And she made it througheverything really well. But then
(11:59):
about in I guess in thebeginning of August, we started
to notice a couple of slightchanges in her that just weren't
adding up. Her voice became veryhoarse. She seemed to be
clearing her throat a lot,having difficulty talking on the
phone. Sometimes people weretelling me, people being family
and like my my mom's siblings,and my siblings telling me, oh,
(12:24):
it's all because she had surgeryand she had, you know, a tube
down, she was intubated, and hervoice is just worse. It's
probably a vocal cord thing. Sostarted with the NT took her to
an ENT. They looked down andthey were like, her vocal cords
are fine, but we do see that shedoesn't have a lot of ability to
push air out, which may beimpacting her voice. So they
(12:47):
wanted us to go to a pulmonarydoctor, for which took a little
while, and in the meantime,between August and September,
when we were going to see thepulmonary doctor, she fell
twice, was kind of back toindependence. Was using a walker
still, because of the kneereplacement, but was working her
way towards a cane, and she waskind of hesitant to go out of
(13:09):
the house. And unfortunately,maybe fortunately, at this
point, my brother and Iencouraged her to get out and
start walking her neighborhoodthe way she used to, and that
first kind of loop around shegot back, and her legs just kind
of gave out on her, and shewasn't able to get up like
luckily she did not get injured,because she was able to lower
(13:30):
herself down. But it was prettysignificant that something else
was wrong with her legs at thispoint. I went down the path, got
her to the pulmonary doctor forthat appointment, and the
pulmonary doctor did hispulmonary test and listened to
her lungs and agreed that he wasseeing something that was not
allowing her to push air out tomake her voice strong, but he
(13:51):
actually noticed that her handswere getting to be a little bit
debilitated. Her muscles werewasting around her thumbs,
which, you know, I was like,
Natalie (14:02):
right now, and I'm like, I don't know that there
was muscles in my thumb likethat, but I'm like, right keep
going.
Unknown (14:08):
I look at it all the time now, you know. And I said
to him, does that have anythingto do with why we're here? And
he said, Well, I want you to goto a neurologist. So I was like,
Okay, do I have to worry abouther lungs at this point? And he
said, No, but you know, so hereferred us to a neurologist who
did the full exam, kind oflooked over her, was starting to
(14:31):
put some pieces together, andbasically paused and said, I
think you need a specialist. AndI said, Well, aren't you a
specialist? Like, isn't that whywe're here? Yeah. And he said,
No, I need you to go to a biggeruniversity hospital. I need you
to see a neuromuscularspecialist. Wow. And, you know,
I said, why? And he said, Idon't want to start looking into
(14:54):
things. I just know that this isnot going to be something that I
would handle. So. To send usdown to the University of Penn,
where we saw a which, you know,lessons learned in the
background, we saw a generalneuromuscular neurologist who
kind of repeated the same exam,decided that my mom needed to
(15:18):
have some testing done, and gaveus the idea that maybe this was
ALS, and kind of blew my mind. Ilooked at him and looked at my
mom, and, you know, my mom said,do you mean Lou Garrett's
disease like that is what youthink I have? And he said, Yes.
And she said, Oh, I don't havethat. Like nobody in my family
(15:40):
has that that's, that's, that'ssomething that you don't just
get that. And you know, he kindof paused and he said, let's
just do the testing and we'llcome
Natalie (15:48):
back to it. Hold on.
Hold that thought for just asecond. Maureen, because we need
to take a break. Yeah, so we'llbe right
Unknown (15:54):
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(16:16):
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(16:39):
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JJ (16:46):
All right, everybody, we are back, and we're right now at the
cusp of you have been through alot of testing, and finally, you
may have reached that pointwhere they give you the answer
to what's going on with yourmom. Lorraine, go ahead.
Unknown (17:00):
Yes. So we were called back after the testing was done,
and called in with the sameneuromuscular doctor who
confirmed that his thoughts werevery strongly ALS.
Unfortunately, he wasn't theperson that could actually
diagnose it. So we, yet again,were sent to an ALS specialist,
and it was a whole team ofdoctors that run a clinic
(17:23):
specifically for ALS. So we gotthere pretty quickly. We you
know, this all started with theneurologist in November,
December of 2020 and we saw theALS team in February of 21 and
at that time, my mom hadprogressed. A little bit a
(17:43):
little bit more things werehappening. She was definitely
falling more, definitelydependent on a walker. Her voice
was low, although she couldspeak clearly. She was eating
and, you know, drinking, all ofthat fine, but when we got to
the specialist, they confirmedthat it was als again. You know,
(18:04):
the two of us were sitting in aroom saying, like, how is this
possible? Like, what does thismean? Where are we going from
here? So we did get educated. Wewere actually brought back in
early March for a full teamevaluation, which is how als
clinics work, where you see thephysician, you see a nurse
practitioner, you see all of thespecialists, the respiratory
(18:27):
therapist, occupationaltherapist, the physical
therapist, therapist,nutritionist, they kind of pull
the whole team together for allof the systems to get impacted
with ALS
JJ (18:39):
So Maureen, I know that with that you had this meeting in
March. I know that your motherpasses with just like six months
later. So I have two questions.
Watching Natalie, she's like,Oh, you'd only get one. So my
question is, first of all, youhave other siblings, so are you
do you become? Which level of ofcaregiver? Are you a secondary,
(18:59):
or are you a primary? JJ,
Natalie (19:03):
is the primary? I can tell you yes. I always say
primary, preferred. Yes, that's
JJ (19:07):
true. So what position do you play? Because I think I
already know this answer. Andwere you put into that position?
Because you were an RN, becauseobviously you know everything
about ALS, so tell me that.
Unknown (19:21):
So that's interesting.
So I was the primary person,primary caregiver. I was her
health advocate in definitionfrom when my father passed, they
kind of named the financialperson and a health person
within our family. So my sistertook on the role of the
financial person, as she worksin a bank and has the finances,
you know, tight, I do not havefinances tight. Now that would
(19:44):
not have been a good role forme, you know, because of my my
nursing background, but also Ihelped to take care of my
father. My father had beendiagnosed with leukemia in 2015
and passed in 2016 So, you know,kind of took that role on there,
which then, you know, fell tojust who I was going to be for
(20:05):
my mother from the get go.
Natalie (20:09):
So you would say what it was assumed, like, you took
care of your dad. So of course,you're going to take care of
your mom. You go to all theappointments. You're the nurse.
You're qualified, right?
Unknown (20:19):
Absolutely and yes, yes, but a whole new world,
though, again, because I knewnothing of ALS,
JJ (20:24):
oh, that's so shocking, you know, because you're a nurse,
you should know everything.
Nurses knew everything I knowdid I matter? That's so
interesting, because we have somany family members who say they
have that medical background,but in actuality, they learn so
much. So I want to talk aboutbecause now this is about you. I
want to talk about the time withyour mom. And how was your time
spent with your mother? Do youfeel like that was a precious
(20:50):
time that you were able tospend, or was it more time that
you were very duty, driven whereyou were, task driven. Task
driven like I have to make sureMom is comfortable. How did you
balance the two? Did your familystep in? Were they there every
weekend, doing the care duties?
You have to let her answer thequestion, so you just keep on
(21:12):
asking notes on that. I know.
Sorry,
Unknown (21:16):
that's okay. I think it was complicated. I took the
role, and I would never have letanybody else have the role. I
mean, I I am that person. I amthat person who kind of takes
control in many situations andneeds to have that control. So I
think that just kind of fell inmy lap that way with my
siblings. What I did was I, youknow, that first day when we
(21:39):
came home, you know, I got themall on the phone with my mom in
the room, and we explained whatwas going on. I have to say my
brothers were a little bit lostin it. They were like, Okay,
well, that's fine. Like, youknow, she's 82 years old. Of
course, she's going to fall. Ofcourse, she's going to need a
walker. Of course, this maybeit's not actually that my sister
(22:00):
needed more details on the side,so she needed the phone call
afterwards to kind of sit andkind of walk her through it. I,
you know, offered Chuck, youknow, identified myself as the
person who would go to all ofher appointments with her. She
did progress fairly quickly, sowe needed to get some care in
(22:21):
the home. We had the toughconversation. She lived alone in
the homework that her my fatherhad purchased in their
retirement time period. So itwas one floor. It was easy
access. It was made wide forwheelchairs. It was like the
perfect place for her to be ableto stay, except that she lived
by herself. So she chose verystrongly that she was not
(22:45):
leaving her home. My fatherstayed at home and passed away
in the house, you know, in theirbedroom, and that is where she
wanted to be. She wanted to bein her home and not be moved
from there. None of my siblingsnor myself, our homes were going
to be conducive to having hermove in with us. We all have
steps. It would have, it wouldhave taken construction, mm, to
(23:07):
have her move in, and I knewthat we didn't have time for
construction. There was, therewas no point in trying to do
that. So we worked with heragain financially. My father was
kind of set her up for successof staying in the home. We were
able to hire some caregiversthrough a home care company, who
were able to come in and assistduring the daytime with her, you
(23:30):
know. And Initially it startedout with, like, four hours a
day, and then we went up toeight, and then we went up to 12
with my siblings, kind ofpopping in quickly, I identified
that my siblings and I needed aschedule. We needed we needed
direction, or they neededdirection, and they didn't need
to depend on me to be there, tokind of with them. I wanted them
(23:53):
to have some one independence oncaring for her, giving me a
break, but also time with herwithout other people around,
yeah, so we set up time, youknow, they each picked an
evening, and they would show upon their day at like five
o'clock and stay with her untilshe went to bed. Once she was in
bed, she was generally okay. Sheyou know, we had a we had to
(24:17):
have lots of talks about notgetting up after we put her in
bed, you know, staying in bed.
We put a commode next to herbedside, right so she could use
that she had multiple fallsafter people left the house for
which I was her call. So, youknow, my husband and I, or my
sister and I would, I would getthe call, and I would deploy
whoever was needed to get upthere to help get her picked up.
Luckily, all of her fallsresulted in no injuries, because
(24:38):
she knew it was happening, soshe had control. It was like a
controlled fall, where she wouldget to the ground, you know, and
safely be there. So over time,the things that I did were
really organize her care and tryto take that step back when my.
Siblings were there so that Icould have time with my family,
(25:02):
continue that life. I wasworking full time. So, you know,
I was going to work every day.
The difficult part for me was ifsomething happened or if my mom
had a question, she called me,oh, she didn't want to talk to
anybody else. She wanted me. Ofcourse, she did.
Natalie (25:19):
Our mom does the same thing with JJ, like the super
last call. You know, I'm goingto pause you for just a second
because I'm going to go over toMolly. Hey, Molly, come back to
us. Okay, awesome. Okay, soMolly, it's interesting, because
we've just heard your mom talkabout kind of everything that's
going on. And you're in collegeat this point, aren't you? I
(25:45):
Yeah, or just graduated. I thinkyou're in your
Unknown (25:48):
right after college.
Yeah, I'm not that young. Yes, Iwas, I was right after
Natalie (25:52):
Yeah, so you're still a puppy, but so this was after
college, and you're watchingthis. So this is a perspective
we've never had before. Tell usa little bit about observing and
how you supported your mom,because I think that you were a
caregiver to the caregiver too,because I feel like you and your
(26:13):
mom have a pretty closerelationship. Yeah, yes,
Unknown (26:16):
we try. And to be fair, it's not really just me,
especially with my grandmother,all of our cousins. So all of my
cousins and my siblings, we allkind of did the same thing in
that rotation that my mommentioned with schedules, either
if somebody you know, therewould always there's four of
them, so there's three othernights kind of to care. And
we're all adults, so I'm one ofthe youngest of our cousins. So
(26:37):
everybody else you know is olderthan me at this point, and if
not, my brother and I wereyounger ones, but we were local
enough, everybody's local. Soeverybody did a really good job
of popping in and supportingtheir own parent. But also, I
think, making sure that, youknow, if we were free, we were
offering, even if it was notsuper convenient, you know, why
don't I go over and hang out?
You can go home and, you know,take a shower, do whatever you
(27:01):
need to do with your night, tohang with her. And we all loved
it, right? Like it was never aduty. I think it sounds more
like it was a schedule and aduty. And I think every single
one of us wanted to be around mygrandmother all the time. She
was, you know, our best friendand our closest confidant a lot
of times. So yeah, but yeah, Ithink for my mom, I think I was
watching her not burn out,really, because I don't think my
(27:23):
mom has the ability to burn out,but I think in a way where I
definitely noticed that she was,unfortunately not getting a
mother daughter relationship anylonger. We had a lot of tough
conversations about how shedeserved to have time that was
not in a wearing her caregiverhat with my grandmother,
(27:43):
especially towards the end ofher time where she was on
hospice and much sicker, and itwas, you know, my mom and myself
there a lot of the time aroundthe clock, and just reminding
her that, you know, she deservesthe most kind of out of
everybody at this point toreally Get that that time with
my grandmother before shepasses. And I think that was
kind of where I really startedto have some harder
(28:06):
conversations and really say,like, I know that you're have
this task list, but let me takesome of those things. I'll get
the morphine prepared, thingslike that that, you know, were
hard for her to let go of, butat the same time, you know, I
think, reminded her that shedeserved to also just be a child
who was losing her parent, notjust, you know the nurse who was
caring for, you know a woman whohad ALS,
JJ (28:29):
go ahead. Jay, so have a question for Maureen, and then
we are going to go back, becausethere's a lot with Molly.
Maureen, I want you to tell methat what, what did it mean for
you, for Molly to say you got tostop, take this time with your
mom, as your mom, if you couldsay something to Molly, what
would it be?
Unknown (28:50):
It would it was an absolute wonderful idea. It was
very difficult for me, as Mollyled to, you know, I've already
said that I'm the controller,I'm the caregiver, I'm the
Kristen, and I'm Molly's mom, soI hesitated on her needing to be
present for the things that weregoing to happen with my mom. But
(29:10):
Molly's just as headstrong as Iam, and very much, you know,
said, but this is what we'redoing. I'm staying here. She,
she went home to her apartmentin Philly, and she packed her
bag up and came back and thensent me home to pack my bag,
because I had been there for acouple of days without, you
know, anything. And it meant theworld to me and to have that
(29:31):
time to know that when I was inthe bedroom with my mom,
spending that time talking toher, you know, being her
daughter, recognizing that theend was coming. She was no
longer able to speak to us atthis point, but definitely was
awake and alert and able tocommunicate through, you know,
signs, you know, squeezing thehand, looking around, those
(29:53):
things that time, I would havenever gotten back if Molly
didn't step in at that at thatmoment, it was different. Took
off because my siblings werethere. But my siblings very much
said, go for it, Molly, like yougot this, you can do it, because
they did not want to be in thatsituation of taking over the
caregiving part of
JJ (30:13):
it. Well, it sounds like you guys are the perfect team. So
Matt, I'm going to jump to breaka little bit early, okay? And
the reason is because I knowthat Maureen, your your brother,
has also been diagnosed withALS, and he's younger, he, I
think he's in his 60s, and youare kind of being a caregiver
(30:35):
for a caregiver again, becausehe's married, but with that, is
that a genetic thing? You know,he's got that. But there's some
genetic testing, or there's sometesting that's gone on that
Molly has found out. And sowe're going to talk to Molly,
sure. All right, we'll be rightback care scout.
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JJ (31:41):
Okay, guys and bringing us back in Natalie.
Natalie (31:44):
Oh, I didn't, I thought that you had a question for
Molly. Well, I mean Mollybringing back 400 quite well, I
know. So okay, so we're comingback. And so I kind of want to
wrap up the the piece with yourmom and I, it sounds to me, what
I hear saying Maureen, is thatyou really were able to have
(32:05):
that closure and be a daughterand not and really pull back on
what I think most people feel ofas a concurrent role, but
typically the caregiver leansheavier into it, and I think
that's such a blessing thatMolly was able to do that as
well as other family members,but I know Molly, and I think
you're blessed because of thepositions that you went into.
(32:28):
And so I think there waseducation that you knew you
were, you were smarter, as Ilike to say, smarter than the
average bear. And so you knowMolly, when did you know I want
to go into the genetic testing?
That's the part that I didn'trealize about ALS and Molly. I
know that we talked about it onour phone call beforehand, and
you shared with me so muchinformation about that, but that
also influenced your decisionmaking earlier in your 20s, as
(32:53):
you were thinking, as you foundout about like this could be
genetic, and I need to thinkabout this moving forward, and
how do I choose to have kids andand how is this going to affect
my spouse? And how do I have aconversation? So Molly, do you
want to jump into that and startchatting about that?
Unknown (33:12):
Yes, I will try to give the brief version. We have the
very unique experience of havinga pattern of ALS on both sides
of our family, which issomething that I think, now that
I've been exposed to the ALSworld lot, I've met a lot of you
know, professionals in the ALSworld, and most of them have
never heard of that happening.
So it's very unique. And Ialways say we should play the
(33:34):
lottery more often, because,right, you know, it's the odds
are really strong. But yes, wehave the pattern from my
grandmother on my mom's side andher brother. Now there's been no
genetic mutation found. Myuncle's had every test possible,
and there is many of them to seeif there's any connection
between my grandmother's alsdiagnosis and his. And so far,
nothing has been identified.
(33:59):
There's a lot of other factorsthat really can play into that
als has, you know, an unknownreason why people get it most of
the time, spontaneous ALS isreally the more common.
Familial. ALS is a much smallerpercentage. It's, I think they
say 10% I think it's probablynow up to, like 15 to 20%
realistically, there's manygenes that are identified, but
(34:20):
there are still families likeours on my mom's side where, you
know, there is a pattern, butthey don't really know why. And
I think a lot of things thatthey think about are like
environmental factors. My uncleis a union worker. He was a
steam fitter forever. So, youknow, there's definitely
different things that can affectI know you and I, Natalie talked
(34:41):
about how veterans have a higherrate of diagnoses of ALS as
well. So there's a lot of thingsoutside of genetic factors, but
on my father's side of thefamily, we actually ended up
having a diagnosis of a c9mutation, which is an open
reading frame. Ation on yourninth chromosome. And that
(35:03):
happened, I guess, with myuncle, I want to say, like 2017
my mom can probably confirmabout in there. So we did learn
of ALS and my dad's head tofamily prior to my grandmother's
diagnosis, okay, but it kind ofwas almost felt like an odd
coincidence. You know, we reallynever thought too hard about it,
(35:23):
other than, well, that's reallystrange. That probably doesn't
happen often. And we were at thesame clinic with my grandmother
that my uncle on my father'sside had used, and I think they
already kind of knew my familywell enough, because my dad's
side of the family had alreadybeen connected with them. So
that was really a blessing forus, I think, in the long run,
because we were familiar withhow the clinic works and the
(35:44):
people in it and everything butmy dad's side of the family, my
uncle found out about hisgenetic mutation just because
there was a another brother oftheirs who had, I think we don't
really know the officialdiagnosis per se, but Some form
of a dementia that, you know,led to his passing many years
(36:04):
before that. You know, theywould have never really
connected it, had they not goneover that family history with my
uncle, who had ALS. And fromthere, my dad and his siblings
were tested for a geneticmutation. Everybody kind of had
their own choice, which isreally how the genetic
counselors recommend that you doit, you know, there's no
pressure to find out about yourgenetic mutation. My father's
(36:25):
was positive and his othersiblings were negative, which
was, I think, a huge blessing aswell. You know, I mean,
unfortunate for my father, ofcourse, but his siblings that
were still, that are stillliving, were all negative. So we
only had that one person who wasreally continuing from their
siblings, and then from there,my sister and I chose to be
tested for the same geneticmutation. I was positive. I
(36:48):
won't share my sister's, youknow, because that's, you know,
her choice. But, and my brotherhas not been tested yet, which,
again, you know, we support himwith that, because it's really a
very personal decision for everyperson who's in that position,
because it can have a lot ofeffects. Of effects on your
life,
Natalie (37:04):
yeah, you know. And we have a friend of ours who we
love, Jordan peace had there wasa genetic mutation for cancer,
and that passed down from hisgrandmother to his mother, and
he chose to be tested, and heknows that he's positive as
well. And so I guess my questionto you is, because this is
(37:25):
really specific about yourchoice to be tested, and then
how did that affect yourdecision making moving forward?
Unknown (37:34):
Yes, I feel like I'm just somebody who has to know
everything. So I very muchregardless of all the factors I
think it would have chosen to betested. I definitely don't think
that might have been a healthydecision all the time, but it's
worked out in the best for me.
So I just really knew that I wasin a really optimal position
where, you know, I was young, Iwas, you know, not in a place
(37:57):
where I was going to be, youknow, with my long term my now
spouse, at the time, I was kindof like, young single dating had
a lot of privilege in knowingthe information when I did to
make decisions for my long termfuture, so I really took
advantage of that with that Ihave now, why we say I always
laugh. I was like, it's kind ofworse than having, like, a
(38:20):
permanent STD when you're in thedating world too, because I'm
like, I feel like I have toreveal this giant secret about a
terminal illness, just to know,you know, somebody is a good
person and not going to leave meif I'm looking for a husband.
So, you know, luckily, I foundhim, but I was very lucky with
that, and we have worked to workthrough a fertility clinic in
freezing embryos and testingthem, testing and then freezing
(38:44):
embryos to use in our futurechildren to eliminate the
genetic mutation. And thatreally came a lot from my sister
started doing a similar pathjust with she was at a different
time when we were getting ourgenetic testing done. She had
just gotten married, and theywere really ready to start
(39:05):
having children, and so that waskind of the driving factor for
her. And she had done a lot ofresearch about, you know,
depending on what that resultis, you know, how would that
affect their journey? And so shehad kind of kicked that off. And
then once I was kind of in aposition where I was thinking
about that, you know, I was ableto really kind of dive right in
and connect with that's
JJ (39:25):
so interesting that you can make that decision, though, to
go ahead freeze those eggs, andpeople don't know that, that if
you they may not know that youcan, you can actually do that
testing with that. You can dothat testing prior to so that's
very interesting
Natalie (39:38):
to me. So what was the conversation? This is different.
But, you know, in you had a careconversation with your
significant other, yourboyfriend at the time, and you
guys are talking about marriage.
I mean, you're exactly right,you know, the permanent STD
versus, hey, I'm going to havethis pretty I'm very likely to
have this pretty dastardlything, and it's going. Be really
(39:59):
hard, and it's going to be, it'sgoing to be hard, it's going to
be hard for me, but it's goingto put you into a direct
caregiver position. It reallydoes help you feel like you
found your lobster when they'relike, Yeah, I don't I, I'm here
with you. What was thatconversation like? And how have
you all planned, thinkingforward to the future beyond
having children.
Unknown (40:22):
Yeah, I think it was awkward, for sure. It was not
normal for you know, I was 25probably, or 26 this
conversation. And for me, it waslike I was at a point where I
was like, Okay, I'm probablygoing to say I love you, and I
think I want to, like, marry youat some point. And now I have to
really reveal this giant secretbefore, because I have no
(40:43):
interest in moving forward withsomebody who you know isn't able
to handle that, or who I don'tperceive as being able to, yeah,
appropriately handle that orsupport me through it. So I was
super lucky, but yeah, I justhad a really blunt which is kind
of how I operate London,conversation about like, this is
a real thing, and this is whatwill happen. And I know that
(41:06):
it's not necessarily 100% forme, but I I speak of it like
that so that there's no, youknow, no shock to reality if and
when it does happen. So, youknow, I shared with him, you
know, the research that I'vedone and what it means, and you
know how detrimental this can bein the future, and what that
would mean for us. And he's justthe nicest person in the world.
(41:27):
And he's a very strong, very,even healed very, I don't know
just how to describe him, buthe's like, not like me at all.
I'm definitely we balance eachother out quite a bit with that.
So he definitely is somebodywho, you know, knew right away
that it didn't matter what Iwould have. Of course, he would
support me through it. And, youknow, as we very early on talk
(41:47):
about marriage, which was also,again, not really my, my MO,
previously to having this, youknow, he was really focused on,
you know, well, if we aretalking about getting married,
it's like through sickness andhealth and all the things. So
that was very relieving to hear,because it almost unlocked, you
know, the door into really beingvulnerable and kind of moving
(42:09):
our relationship to the nextlevel in terms of, you know, a
really long term strongrelationship, rather than just
dating at 25 or 26 but yeah, andthen from there, I think things
that we really now, especiallyafter our wedding, was just in
September. So a lot of thingsthat we've already started
thinking about is, you know,where we want to end up long
(42:29):
term, for me, that means beingnear some kind of, you know,
good health care facility. Ithink, I think that growing up
in Philadelphia was a privilegefor that and, of course, also,
just to mention, I think isimportant that, like we grew up,
we are privileged in a lot ofways when it comes to our access
to health care. So not justbeing in Philadelphia, but
(42:51):
there's many sides toPhiladelphia, and we were very
lucky to be in the working classthat we were, and the color of
our skin played a big role, ofcourse, in our education and
what led us to be able to be inthe positions of being a nurse,
and you know, the person that Iam in my position to have not
only knowledge, but access andsupport around us in terms of
just all the privilege thatcomes with you know who you are
(43:13):
and where you are. So I thinkthat's really important to note
that we've had probably a mucheasier time, even if it sounds
like a challenging time thatother people may have if they
were going through what we havewith, you know, a journey with
ALS or the diagnosis, andespecially access to really good
health care, like a geneticcounselor who can counsel you
through all these things andtalk to you about fertility and
(43:36):
things like that. So it's been abig privilege to have that, but
also to be able to then sharethat with you know, my sister
and I, with our husbands andwith our other family members
who you know are reallyinterested in learning and
getting involved, our friendsand we've taken a lot of steps
to plan for being around like amajor healthcare facility,
probably on the East Coast,because I know that. I just know
(43:57):
where certain clinics are,certain doctors that I would
trust with my journey that I'mon. And then on top of that, I
think, like financiallyplanning, yeah, oh yeah, a lot,
you know, making sure we have anaccount, a savings account that
specifically is for healthcareand emergency funds for the
future and things like that. Myhusband's extremely savvy with,
(44:19):
you know, knowing how tonavigate the financial world and
long term planning and things,which, again, has been huge for
me, because I was like, I wouldbe, you know, on vacation every
day if I
JJ (44:30):
so, it sounds like, it sounds it sounds like you've got
a lot of planning in there. Youknow, that is kind of key to
what your future is, but you'reoptimistic So, but it also
sounds like you have a lot ofadvocacy in your heart. Do I
hear that when you talk aboutyour privilege, but also color
of skin, things like that? Itseems like there's a lot of
(44:51):
advocacy there. And what is yourkind of look at the future? I
mean, are you out there becauseof your field, or you're like,
we are going to find a cure forthis? Like. You, is that what
you see in your future?
Unknown (45:02):
Yeah, I mean, I would definitely love to continue to
be a part of that. I've reallytrained to take a deeper dive
into different advocacy groups.
My mom and I are both peermentors through I am ALS, which
is who connected us with youall, and then just kind of
making sure that I'm keeping upto date with. You know, what's
happening in terms of, you know,different policies being passed,
(45:23):
being involved with, you know,advocating with legislature,
from writing letters and justbeing up to date on joining
meetings and just showingsupport for any changes that are
trying to be made. I'm aclinical study patient in a
couple of different researches,research studies that are being
done. I go to the NIH once ayear for some couple days worth
of appointments to make sure I'mkind of doing my part in
(45:47):
contributing to the researchthat's happening. And then
working with a couple ofdifferent a pharmaceutical
company that's got a lot of goodwork going on, just working on
like an advisory board withthem, so that they keep the kind
of mindset of patients andcaregivers in their mind when
they're planning their clinicaltrial out. Just kind of trying
to dive into all the things thatI can. And now recently, I've
(46:10):
been kind of connecting with afew younger women that I was a
panelist on University of Penn'swebinar for familial ALS. To
they kind of just do, like aupdate on research annually, and
have different panelists come onand just kind of share their
experience answer questions. Andthat's led to a lot of young
women who are in the sameposition as I am, where they
(46:32):
either found out that theirparent has this or one of the
other genetic mutations for ALSor FTD, and then, you know what
that means for them, kind ofhelping them understand what
happens if you have a positiveresult, what that can mean, how
it can affect your long terminsurance, your health, all the
things that can kind of play arole. So that's been really nice
(46:53):
to kind of connect with otheryounger women and hopefully
guide them in a way that theycan make, you know, informed
decisions for themselves aboutwhat it means for their future
if they were to be tested, orwhat their test results mean.
Well,
Natalie (47:06):
and I know that we're at our time. I mean, we're not
even at sister questions, andthis is what happens. But I knew
this was going to happen, and sowe're going to go over a little
bit for folks, because I thinkthere's some pieces that I want
to make sure and go back to yourmom. Hey, Maureen, still there,
still here. And I love that.
We're like, she's like, I'mstill here. I'm still standing.
I know I was gonna I knew I wasgonna sing in this episode at
(47:27):
some point. So there's so manygreat things that you ladies are
doing. I'm really glad that youtalked about peer support. And I
know Maureen, you're doing peersupport. And so I guess my
question is going to be, tell mea little bit about how you doing
peer support has really helpedyou. Because I know, you know,
you may have thought, I'm notsure about this. So Maureen, can
(47:48):
you tell me about yourexperience with doing peer
support for others?
Unknown (47:54):
Absolutely. You know, Molly reached out to me a little
while back and said, I think youwould really do well with this.
Connected me with I m, a, l, s,I did the training and and got
paired with a woman whoabsolutely is living my life as
I did with my mom. Her situationis, is almost parallel with
(48:15):
mine. Wow. It has allowed me tonot just share like, the
practices that I was able to do,and kind of look back on, you
know, what worked for me, whatdidn't, to kind of share with
her, to allow her this, thiswoman, to kind of look at the
options on, how do you bestprepare for this? You know? How
do you communicate? How do youwork with your siblings? How do
(48:37):
you work with the healthcarefield? What's available out
there? I've kind of been able tolay that out for for her and her
family, but it has also allowedsome healing with me. It has
allowed me to kind of, you know,get away from the fact that my
mom passed from ALS, and lookat, you know, that time that was
spent with her before herdiagnosis, during her diagnosis,
(49:01):
and then absolutely that lastweek when Molly jumped in, and,
you know, and I say, jumped in,you know, as Molly said, her and
her cousins were there allalong. They were along for the
ride, right? They were therehelping. But, you know, towards
the end there, it really hasallowed me to kind of look at
that bigger picture and seethat, you know, there were rough
times. And there were times thatif I could go back and change
(49:22):
something, I may but, butgenerally, I had that time with
my mom as both the caregiver,which is what she wanted, but
also the daughter, and watchedher, you know, become a great
grandmother again. Surely aftermy mom passed, my first
granddaughter was born, so shedidn't get to meet her, but she
(49:43):
was very active in thatpregnancy, and and knowing that,
you know, we were having a baby,and what that would mean, and
I've been able to kind of put inbe the grandmother my mother
was. I'll never, I'll nevermatch who my mother was as a
grandmother, but, but, you know,definitely have learned a lot.
Lot,
Natalie (50:01):
yeah.
JJ (50:02):
Jay question, my question would be advice that you would
give someone that has a childthat was or it has been
diagnosed, or they found thatmutation that could possibly,
that could possibly lead to thistype of terminal illness, advice
that you would give a parent,
Unknown (50:24):
from a mom to a mom perspective, I would say, you
know, support them. Be there,listen to them. Educate
yourself. Molly got quicklyeducated, and was educated on
this c9 mutation, much deeperthan I was at the beginning. She
really helped me understand, youknow, what I needed to learn,
(50:47):
but really to be there, be openand be open to what each of the
children want or don't want. Youknow, as Molly said, her and her
sister chose to be tested. Herbrother has not yet chosen that,
but, but we all need to supporteach other, as it is. My husband
is, you know, does have thegenetic mutation. He's at the
prime age where his brotherstarted with symptoms, and
(51:10):
again, it was very fast movingals that his brother passed
with. So supporting him. He'sinvolved in the research that
Molly is, but just throughanother hospital. So kind of
staying behind that and justbeing open to that and listen
and become educated in thisworld of, you know, the unknown.
I mean, this was something wedid not know anything about
(51:33):
prior to these, thesesituations.
Natalie (51:35):
And I'm going to end it with Molly too. Molly, any
advice that you would give tosomeone, any advice from a
caregiving standpoint that youwould that you would offer,
Unknown (51:51):
I think learning how to be an advocate in whatever way
that your loved one needs isreally important. And for us,
obviously, we have a fewdifferent people who we need to
do that for. And I think meetingwhichever person it is, you
know, where they're at withtheir diagnosis is really
important, but learning how youcan be a partner and a pair with
(52:14):
them in it, but remember thatit's their experience, and you
can be there to support them andlearn how to be an advocate by
maybe getting a differentperspective that, you know, it's
hard for somebody who has adiagnosis to understand, but,
you know, let them lead the wayand just learn ways that you can
support them and be involved.
But I think my mom and I haveboth learned especially the
(52:37):
difference with my grandmotherand my uncle, and then, you
know, thinking about our ownpersonalities, I think in the
future of every journey is goingto be extremely different and
look very different. And there'sways to support and advocate for
each different one. And I thinkthat's the most powerful thing
that you can really do forsomebody who has a diagnosis
like ALS, or really like any,you know, terminal or long term
(53:01):
chronic illness.
Natalie (53:05):
So I will say this, we always ask the last question,
and it is, what is your favoriteguilty pleasure? And the reason
I say that is because it'sreally how to use self care.
What is the thing that you dojust for yourself? Molly, and
then Maureen, I'm going to comeback to you. What's the thing
that you do just for yourselfthat really is like, Oh, I love
that. That's your self care.
That's that's how you reallyrespect, love and care for
(53:27):
yourself.
Unknown (53:30):
So the thing about having a terminal genetic
mutation is that I do many ofthose things, and then I get to
blame it on the fact that I haveALS in my young life, and then
that's how I kind of, you know,I use the ALS card often, or the
genetic mutation card often, butI do, I do get my my monthly
facials that has been, oh, Isupport that of my care. And I
(53:54):
take a lot of trips. I traveloften. I love that very often.
And that's where I spend most ofmy money. Oh,
Natalie (54:01):
I love it. I love it.
Well, it helps. I mean, youknow, at some point maybe you
all have a plane, since yourhusband is conveniently a pilot,
I will always say thank you foryour service and to your husband
for his service as well. And somuch love to you guys, both and
Maureen, tell me. Tell me aboutyour self care. How do you take
care of Maureen? What's yourfavorite thing that you do, just
for yourself,
Unknown (54:21):
just for myself, something I picked up from my
mother that I would have neverguessed, that I would ever have
any pleasure in, but getting mynails done on a regular basis,
getting aman, Oh, that girl, that
Natalie (54:30):
is the truth. And I look at my nails and I'm like,
Oh Lord,
Unknown (54:35):
not something I would have ever paid for. It took the
time for or invested in. Butwhen my mother did get sick and
required some, some, you know,assistance to get to those
places, the one place that sheneeded to be was to get her
nails done. And she actually gother nails done on a Thursday and
on Saturday, is when she tookher drastic decline. So, you
(54:57):
know, at this point, I make surethat my nails are. Done on a
regular basis, and it reallydoes, you know, help you feel
better.
Natalie (55:05):
Oh, that.
JJ (55:06):
I love that. Let me just say that it has been an honor and a
pleasure to meet you guys. Ilook at your past experiences,
and they're so beneficial toeverybody. You're present and
what you're doing, youradvocacy, your involvement in
all these tests are amazing andyour future, because I know that
it's just going to be amazing,all of the things that you do,
(55:29):
regardless of diagnosis, I justlive in a full life. It's it's
all good, and I just thank you,because you guys have been a
blessing. Oh, I love it.
Natalie (55:38):
A full life. Guys, thank you so much for being with
us and guys, thank you forjoining us on this episode, and
until we confess again, we willsee you next time. Bye. Bye.
Well, friends, that's a wrap onthis week's confession. Thanks
so much for listening in to thepodcast. But before you go,
please take a moment to leave usa review and tell your friends
(56:01):
about the confession show. Don'tforget visit our website to sign
up for our newsletter, as wellas connect with us on Facebook,
Instagram, LinkedIn, Pinterestand Twitter. You'll also find
the video recording of all ofour episodes on the confessions
website and our YouTube Channel.
We'll see you next Tuesday, whenwe come together to confess
(56:21):
again, Till then, take care ofyou. Okay, let's talk
disclaimers. We are not medicalprofessionals and are not
providing any medical advice. Ifyou have medical questions, we
recommend that you talk with amedical professional of your
choice. As always, my sistersand I, at confessions of our
(56:42):
reluctant caregiver have takencare in selecting the speakers,
but the opinions of our speakersare theirs alone. The views and
opinions stated in this show aresolely those of the contributors
and not necessarily those of ourdistributors or hosting company.
This podcast is copyrighted, andno part can be reproduced
without the express writtenconsent of the sisterhood of
(57:06):
care LLC, thank you forlistening to The Confessions of
a reluctant caregiver podcast.
You.
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