The Power of Family: Navigating ALS Across Generations

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.

Thank you to sponsor: CareScout

Learn more about Confessions of a Reluctant Caregiver: https://confessionsofareluctantcaregiver.com/

** Caregiver Action Network Caregiver Help Desk offers free support to family caregivers via phone, chat, or email Monday through Friday, 8:00 am - 7:00 pm Eastern. Get answers, resources, support group info, or a listening ear. Visit www.caregiveraction.org/helpdesk/ or call 855-277-3640.**

Transcript

Natalie: 0:00

Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver. Podcast. On the show, you'll hear caregivers confessing the good, the bad and the completely unexpected. You're guaranteed to relate be inspired. Leave with helpful tips and resources and, of course, laugh. Now let's jump right in to today's guest confession. Hey, Jay, hey, Natalie, how are you doing this

JJ: 0:27

morning? You know, I got some coffee and I'm feeling great. Yeah, I've got water,

Natalie: 0:32

and I realized before we started I needed to pee.

JJ: 0:35

That's way too much for us to start. The audience doesn't want to hear that. Yeah,

Natalie: 0:38

and I was going to sing this morning, but since we've got two guests on and there's so much good stuff, I'm not going to sing, although I was thinking about 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. And we've got a mother daughter, and we've never had a mother daughter combo. We

JJ: 0:56

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 I don't have my glasses on. So if you're listening, just know I'm looking down because I'm not wearing my glasses. So let me tell you guys who we have today. Today we have with us, Molly McCloskey. I always mess that up. Molly, sorry. Molly. Molly. McCloskey. Healy and Maureen McCloskey. And first of all, I'd like to say they are a mother and daughter team. Yeah, I love teams. I love teams. They have been caregivers. They are caregivers. They will be caregivers, and they will need to be cared for. I say they are the reason why Rosalynn Carter, that's that's why she feared. Statement, they are that. Statement, yeah, both have healthcare backgrounds, and I think that's a path that they were both destined and chose to take. Matt, today, we're going to talk about ALS, we're going to talk about Alzheimer's. We're going to talk about frontal, frontal, temporal dementia, and even the recognition that you are predestined to become, to become a you predestined to those because of a gene that a mutated gene that is actually already recognized because of some testing. So I want to welcome today, Maureen McCloskey, good morning here. Thank you. And Molly,

Unknown: 2:27

Hi, good morning everybody.

JJ: 2:29

Hi, good morning.

Natalie: 2:30

So excited to have you guys. So I know this is the first time we're having two. You know, we did have two people. It was a husband and wife, but they were in the same frame, yeah. And so this is there in we've got one person in Philadelphia, Marines in Philadelphia. And then Molly, you're in Kansas City, right? Yes. Okay, so normally we always JJ and I were talking about to make sure that we really got the story out. Normally, I always talk about, tell us, you know, from the beginning, tell us about yourself, and I'm going to actually ask both of you to tell us a little bit about yourself, and I'm going to start with Maureen if you want to tell us a little bit about your background growing up, and a little bit about your family. Because this I know that your care started with your mom, but care has permeated throughout the entire family. So Maureen, and then Molly, we'll jump to you after we chat with your mom. So Maureen, you're on the hot seat. So tell us a little bit about your background, where you're from, your sibs, all that good

Unknown: 3:37

stuff. Very good. As I said, happy to be here. I am one of four children. I was born and raised in Philadelphia. Actually, I live in the home I bought the home that I was raised in from my parents about 23 years ago at this point. So my parents are both deceased at this time. I am the youngest of four children. I have an older sister and two older brothers. I am married now, and have three wonderful children and one granddaughter. I'm a nurse, by background, I'm a pediatric nurse, and have worked at the same facility for 38 years. Wow. Back in 2020 I switched my career path a little bit and became an infection preventionist at the same institution. So I've been an infection preventionist, still holding my nursing license and practicing as a nurse, but also now certified in infection control since 20 since 2020 unfortunately, that happened during the pandemic, when they were in highest need. And I took this little career path just to help out for a little while, but really found the liking to it better, work, life balance and a whole kind of a different world to be a part of, and liked it. So took a four. Time position at that time.

Natalie: 5:02

Do you think that that switch in positions potentially helped you with caring for your mom?

Unknown: 5:09

So it's interesting, it actually happened around the same time. So by this switch happened in 2020, just as my mom was. I guess this position started before my mom started with symptoms, but shortly after I took the position, my mother did have surgery, and then symptoms of ALS started to appear at that time. And yes, I do think that this has helped me, because it's a much more flexible position. I am able to work from home. My days off can be a little bit more in the moment than when I was at the bedside, doing nursing where things needed to be a little bit more scheduled out

Natalie: 5:49

that's true.

JJ: 5:50

Shows how important that employers

Natalie: 5:52

are. I'm telling you right now, employers and flexibility and caregiving, I think that's such a such a big thing that we always want to visit to say out loud, because, you know, seven out of 10 caregivers also work full time or part time, and they not only need to do that, want to do that as well. Rather, it's financial reasons, just, honestly, a sanity check. And so, okay, let's switch over to Molly.

JJ: 6:19

Molly,

Unknown: 6:22

Hi, yes, you have me here. I am 30 years old, and recently got married. I guess I'm going a little bit backwards, but I'm from Philadelphia. Was born and raised there for the first 28 years of my life, until a couple years ago, my now husband is an Air Force pilot, so we are out here in Kansas City now for that, but I grew up with my two siblings, my younger brother, my older sister, my parents and a very large, very large family, very loving large family, which was, you know, a great experience for me, with cousins and aunts and uncles, always around my grandparents. So we're all very close. And grew up and went to school in Philadelphia. I went to high school right in Center City of Philadelphia, and then went to Temple University for my undergrad degree, and graduated from there and also commissioned as a officer in the Army through the Army ROTC program at Temple. So now I currently work in pharmaceuticals, but as a case manager for a rare disease drug, a couple of rare disease drugs for neuromuscular rare disease was doing that previously with the ALS community, and now working with the myasthenia gravis and neuromyelitis optica spectrum disorder diagnoses. So that is kind of where I'm at now, but I spent a couple of years trying to find my way a little bit, and was in the healthcare setting. I was at the same hospital as my mom for a couple of years, which was so fun, and then at the VA for a little while, and as an organ transplant coordinator, so I've kind of had a little bit of a taste of everything when it comes to case management in the healthcare world, and then switched over to pharmaceuticals in the last like five years or so.

JJ: 8:03

So that's very interesting. I will just ask if your past at the time, I know that you were in college, and you've come up to that 30, which is very young. She are just a puppy. She's a puppy. Have some of your experience as experiences as caregivers, and then knowing and being familiar with ALS and Alzheimer's and other diseases. Have those led you down the path that you choose to go Molly? Has that kind of given you some insight?

Unknown: 8:37

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 think she passed in October of 2021, and in about December. So maybe, like, eight weeks after that, I stumbled across a company that was looking for case managers in the pharmaceutical world for a drug that was going to be coming to market for ALS, actually. So it was a little bit of like a, oh my gosh, did she just plop this down into my lap? You know, I was not really looking for a job, but had, you know, I was actually creating a LinkedIn for the first time because I hadn't had one, and right in front of me was this job posting. Of, you know, we are looking for people who 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 guide through that newly diagnosed period and getting access to new therapy. So I really felt like fate a little bit. And I absolutely loved my time at the first company that I worked for, and then have since moved on to another company, and really kind of continued on that path. And I definitely see myself going further, you know, in that direction, and a little bit more in the world of like advocacy and patient access to. And helping people with navigating the rare diseases that they have. So it's definitely been a large part of my own career journey to just have been exposed to ALS through my family. Yeah,

Natalie: 10:09

very interesting. So I want to Maureen, I want to jump back to you. This is much more fun. This is like this. Go back on the other episode of Maureen. Hey, Maureen. I want to go ahead and let's, let's talk about your mother and ALS and that diagnosis, and is this, I'd like to get a little bit more background about when she was diagnosed. But did the family know that this is a genetic issue? And let's talk about what care was like, because I know, Molly, you stepped in as well intermittently, and then especially towards the end of really helping to support your mom. And we'll come back to you. So Maureen, let's jump back on with you and give us, give us some background on that and tell us kind of what happened. Sure,

Unknown: 10:58

it was difficult to kind of figure out what was going on with my mom. She had very healthy, 82 years old, very independent. My father had passed away in 2016 and she kind of found her way without him, with the support of the family. But in 2020 she was very active and started to have some difficulty with moving around, kind of being as independent as she wanted. She was bowling, she was going to aerobics, she would go swimming, she was going out with her friends. She she had a really close community. On top of having family close by keeping her very busy, we had taken her to an orthopedic because her right knee was kind of really bothering her, which she had had trouble before. With that, they actually did a knee replacement in June of 2020, for which she recovered very well from I moved in with her for a couple of weeks at that time to get her through, you know, get her back to being independent. And she made it through everything really well. But then about in I guess in the beginning of August, we started to notice a couple of slight changes in her that just weren't adding up. Her voice became very hoarse. She seemed to be clearing her throat a lot, having difficulty talking on the phone. Sometimes people were telling me, people being family and like my my mom's siblings, and my siblings telling me, oh, it's all because she had surgery and she had, you know, a tube down, she was intubated, and her voice is just worse. It's probably a vocal cord thing. So started with the NT took her to an ENT. They looked down and they were like, her vocal cords are fine, but we do see that she doesn't have a lot of ability to push air out, which may be impacting her voice. So they wanted us to go to a pulmonary doctor, for which took a little while, and in the meantime, between August and September, when we were going to see the pulmonary doctor, she fell twice, was kind of back to independence. Was using a walker still, because of the knee replacement, but was working her way towards a cane, and she was kind of hesitant to go out of the house. And unfortunately, maybe fortunately, at this point, my brother and I encouraged her to get out and start walking her neighborhood the way she used to, and that first kind of loop around she got back, and her legs just kind of gave out on her, and she wasn't able to get up like luckily she did not get injured, because she was able to lower herself down. But it was pretty significant that something else was wrong with her legs at this point. I went down the path, got her to the pulmonary doctor for that appointment, and the pulmonary doctor did his pulmonary test and listened to her lungs and agreed that he was seeing something that was not allowing her to push air out to make her voice strong, but he actually noticed that her hands were getting to be a little bit debilitated. Her muscles were wasting 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 like that, 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 anything to do with why we're here? And he said, Well, I want you to go to a neurologist. So I was like, Okay, do I have to worry about her lungs at this point? And he said, No, but you know, so he referred us to a neurologist who did the full exam, kind of looked over her, was starting to put some pieces together, and basically paused and said, I think you need a specialist. And I said, Well, aren't you a specialist? Like, isn't that why we're here? Yeah. And he said, No, I need you to go to a bigger university hospital. I need you to see a neuromuscular specialist. Wow. And, you know, I said, why? And he said, I don't want to start looking into things. I just know that this is not going to be something that I would handle. So. To send us down to the University of Penn, where we saw a which, you know, lessons learned in the background, we saw a general neuromuscular neurologist who kind of repeated the same exam, decided that my mom needed to have some testing done, and gave us the idea that maybe this was ALS, and kind of blew my mind. I looked at him and looked at my mom, and, you know, my mom said, do you mean Lou Garrett's disease like that is what you think I have? And he said, Yes. And she said, Oh, I don't have that. Like nobody in my family has that that's, that's, that's something that you don't just get that. And you know, he kind of paused and he said, let's just do the testing and we'll come

Natalie: 15:48

back to it. Hold on. Hold that thought for just a second. Maureen, because we need to take a break. Yeah, so we'll be right

Unknown: 15:54

back. Great care. Scout, say goodbye to aging care that makes older adults feel invisible and family caregivers feel alone. Say hello to a better path to finding, choosing and feeling confident about aging care, whether you're trying to understand what type of care and which supports may be right for your loved one, or you need to find quality care now, care scout can be your guide. Learn more at care scout.com you com. Care forward is a technology platform that connects volunteers with seniors, the disabled and those with chronic or complex health conditions, offering support like transportation, home visits and more details online@careforward.io

JJ: 16:46

All right, everybody, we are back, and we're right now at the cusp of you have been through a lot of testing, and finally, you may have reached that point where they give you the answer to what's going on with your mom. Lorraine, go ahead.

Unknown: 17:00

Yes. So we were called back after the testing was done, and called in with the same neuromuscular doctor who confirmed that his thoughts were very strongly ALS. Unfortunately, he wasn't the person that could actually diagnose it. So we, yet again, were sent to an ALS specialist, and it was a whole team of doctors that run a clinic specifically for ALS. So we got there pretty quickly. We you know, this all started with the neurologist in November, December of 2020 and we saw the ALS team in February of 21 and at that time, my mom had progressed. A little bit a little bit more things were happening. She was definitely falling more, definitely dependent on a walker. Her voice was low, although she could speak clearly. She was eating and, you know, drinking, all of that fine, but when we got to the specialist, they confirmed that it was als again. You know, the two of us were sitting in a room saying, like, how is this possible? Like, what does this mean? Where are we going from here? So we did get educated. We were actually brought back in early March for a full team evaluation, which is how als clinics work, where you see the physician, you see a nurse practitioner, you see all of the specialists, the respiratory therapist, occupational therapist, the physical therapist, therapist, nutritionist, they kind of pull the whole team together for all of 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 mother passes 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, you have other siblings, so are you do you become? Which level of of caregiver? Are you a secondary, 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. And were you put into that position? Because you were an RN, because obviously 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 definition from when my father passed, they kind of named the financial person and a health person within our family. So my sister took on the role of the financial person, as she works in a bank and has the finances, you know, tight, I do not have finances tight. Now that would not have been a good role for me, you know, because of my my nursing background, but also I helped to take care of my father. My father had been diagnosed with leukemia in 2015 and passed in 2016 So, you know, kind of took that role on there, which then, you know, fell to just who I was going to be for 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 the appointments. You're the nurse. You're qualified, right?

Unknown: 20:19

Absolutely and yes, yes, but a whole new world, though, again, because I knew nothing 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 know did I matter? That's so interesting, because we have so many family members who say they have that medical background, but in actuality, they learn so much. So I want to talk about because now this is about you. I want to talk about the time with your mom. And how was your time spent with your mother? Do you feel like that was a precious time that you were able to spend, or was it more time that you were very duty, driven where you were, task driven. Task driven like I have to make sure Mom is comfortable. How did you balance the two? Did your family step in? Were they there every weekend, doing the care duties? You have to let her answer the question, so you just keep on 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 let anybody else have the role. I mean, I I am that person. I am that person who kind of takes control in many situations and needs to have that control. So I think that just kind of fell in my lap that way with my siblings. What I did was I, you know, that first day when we came home, you know, I got them all on the phone with my mom in the room, and we explained what was going on. I have to say my brothers were a little bit lost in it. They were like, Okay, well, that's fine. Like, you know, she's 82 years old. Of course, she's going to fall. Of course, she's going to need a walker. Of course, this maybe it's not actually that my sister needed more details on the side, so she needed the phone call afterwards to kind of sit and kind of walk her through it. I, you know, offered Chuck, you know, identified myself as the person who would go to all of her appointments with her. She did progress fairly quickly, so we needed to get some care in the home. We had the tough conversation. She lived alone in the homework that her my father had purchased in their retirement time period. So it was one floor. It was easy access. It was made wide for wheelchairs. It was like the perfect place for her to be able to stay, except that she lived by herself. So she chose very strongly that she was not leaving her home. My father stayed at home and passed away in the house, you know, in their bedroom, and that is where she wanted to be. She wanted to be in her home and not be moved from there. None of my siblings nor myself, our homes were going to be conducive to having her move in with us. We all have steps. It would have, it would have taken construction, mm, to have her move in, and I knew that we didn't have time for construction. There was, there was no point in trying to do that. So we worked with her again financially. My father was kind of set her up for success of staying in the home. We were able to hire some caregivers through a home care company, who were able to come in and assist during the daytime with her, you know. And Initially it started out with, like, four hours a day, and then we went up to eight, and then we went up to 12 with my siblings, kind of popping in quickly, I identified that my siblings and I needed a schedule. We needed we needed direction, or they needed direction, and they didn't need to depend on me to be there, to kind of with them. I wanted them to have some one independence on caring for her, giving me a break, but also time with her without other people around, yeah, so we set up time, you know, they each picked an evening, and they would show up on their day at like five o'clock and stay with her until she went to bed. Once she was in bed, she was generally okay. She you know, we had a we had to have lots of talks about not getting up after we put her in bed, you know, staying in bed. We put a commode next to her bedside, right so she could use that she had multiple falls after people left the house for which I was her call. So, you know, my husband and I, or my sister and I would, I would get the call, and I would deploy whoever was needed to get up there to help get her picked up. Luckily, all of her falls resulted in no injuries, because she knew it was happening, so she had control. It was like a controlled fall, where she would get to the ground, you know, and safely be there. So over time, the things that I did were really organize her care and try to take that step back when my. Siblings were there so that I could have time with my family, continue that life. I was working full time. So, you know, I was going to work every day. The difficult part for me was if something happened or if my mom had a question, she called me, oh, she didn't want to talk to anybody else. She wanted me. Of course, she did.

Natalie: 25:19

Our mom does the same thing with JJ, like the super last call. You know, I'm going to pause you for just a second because I'm going to go over to Molly. Hey, Molly, come back to us. Okay, awesome. Okay, so Molly, it's interesting, because we've just heard your mom talk about kind of everything that's going on. And you're in college at this point, aren't you? I Yeah, or just graduated. I think you're in your

Unknown: 25:48

right after college. Yeah, I'm not that young. Yes, I was, I was right after

Natalie: 25:52

Yeah, so you're still a puppy, but so this was after college, and you're watching this. So this is a perspective we've never had before. Tell us a 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 mom have a pretty close relationship. 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 all kind of did the same thing in that rotation that my mom mentioned with schedules, either if somebody you know, there would always there's four of them, so there's three other nights kind of to care. And we're all adults, so I'm one of the youngest of our cousins. So everybody else you know is older than me at this point, and if not, my brother and I were younger ones, but we were local enough, everybody's local. So everybody did a really good job of popping in and supporting their own parent. But also, I think, making sure that, you know, if we were free, we were offering, even if it was not super 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 need to do with your night, to hang with her. And we all loved it, right? Like it was never a duty. I think it sounds more like it was a schedule and a duty. And I think every single one of us wanted to be around my grandmother all the time. She was, you know, our best friend and our closest confidant a lot of times. So yeah, but yeah, I think for my mom, I think I was watching her not burn out, really, because I don't think my 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 any longer. We had a lot of tough conversations about how she deserved to have time that was not in a wearing her caregiver hat with my grandmother, especially towards the end of her time where she was on hospice and much sicker, and it was, you know, my mom and myself there a lot of the time around the clock, and just reminding her that, you know, she deserves the most kind of out of everybody at this point to really Get that that time with my grandmother before she passes. And I think that was kind of where I really started to have some harder conversations and really say, like, I know that you're have this task list, but let me take some of those things. I'll get the morphine prepared, things like that that, you know, were hard for her to let go of, but at the same time, you know, I think, reminded her that she deserved to also just be a child who was losing her parent, not just, you know the nurse who was caring for, you know a woman who had ALS,

JJ: 28:29

go ahead. Jay, so have a question for Maureen, and then we are going to go back, because there's a lot with Molly. Maureen, I want you to tell me that what, what did it mean for you, for Molly to say you got to stop, take this time with your mom, as your mom, if you could say 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 Molly led 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, so I hesitated on her needing to be present for the things that were going to happen with my mom. But Molly's just as headstrong as I am, and very much, you know, said, but this is what we're doing. I'm staying here. She, she went home to her apartment in Philly, and she packed her bag up and came back and then sent me home to pack my bag, because I had been there for a couple of days without, you know, anything. And it meant the world to me and to have that time to know that when I was in the bedroom with my mom, spending that time talking to her, you know, being her daughter, recognizing that the end was coming. She was no longer able to speak to us at this point, but definitely was awake and alert and able to communicate through, you know, signs, you know, squeezing the hand, looking around, those things that time, I would have never gotten back if Molly didn't step in at that at that moment, it was different. Took off because my siblings were there. But my siblings very much said, go for it, Molly, like you got this, you can do it, because they did not want to be in that situation 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 break a little bit early, okay? And the reason is because I know that Maureen, your your brother, has also been diagnosed with ALS, and he's younger, he, I think he's in his 60s, and you are kind of being a caregiver for a caregiver again, because he'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 some testing that's gone on that Molly has found out. And so we're going to talk to Molly, sure. All right, we'll be right back care scout.

Unknown: 30:52

Say goodbye to aging care that makes older adults feel invisible and family caregivers feel alone. Say hello to a better path to finding, choosing and feeling confident about aging care, whether you're trying to understand what type of care and which supports may be right for your loved one, or you need to find quality care now, care scout can be your guide. Learn more at care scout.com you Kristen. Careforward is a technology platform that connects volunteers with seniors, the disabled and those with chronic or complex health conditions, offering support like transportation, home visits and more details online@careforward.io

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 Molly bringing back 400 quite well, I know. So okay, so we're coming back. And so I kind of want to wrap up the the piece with your mom and I, it sounds to me, what I hear saying Maureen, is that you really were able to have that closure and be a daughter and not and really pull back on what I think most people feel of as a concurrent role, but typically the caregiver leans heavier into it, and I think that's such a blessing that Molly was able to do that as well as other family members, but I know Molly, and I think you're blessed because of the positions that you went into. And so I think there was education that you knew you were, you were smarter, as I like to say, smarter than the average bear. And so you know Molly, when did you know I want to go into the genetic testing? That's the part that I didn't realize about ALS and Molly. I know that we talked about it on our phone call beforehand, and you shared with me so much information about that, but that also influenced your decision making earlier in your 20s, as you were thinking, as you found out about like this could be genetic, and I need to think about this moving forward, and how do I choose to have kids and and how is this going to affect my spouse? And how do I have a conversation? So Molly, do you want to jump into that and start chatting about that?

Unknown: 33:12

Yes, I will try to give the brief version. We have the very unique experience of having a pattern of ALS on both sides of our family, which is something that I think, now that I've been exposed to the ALS world lot, I've met a lot of you know, professionals in the ALS world, and most of them have never heard of that happening. So it's very unique. And I always say we should play the lottery more often, because, right, you know, it's the odds are really strong. But yes, we have the pattern from my grandmother on my mom's side and her brother. Now there's been no genetic mutation found. My uncle's had every test possible, and there is many of them to see if there's any connection between my grandmother's als diagnosis and his. And so far, nothing has been identified. There's a lot of other factors that really can play into that als has, you know, an unknown reason why people get it most of the time, spontaneous ALS is really the more common. Familial. ALS is a much smaller percentage. It's, I think they say 10% I think it's probably now up to, like 15 to 20% realistically, there's many genes that are identified, but there are still families like ours on my mom's side where, you know, there is a pattern, but they don't really know why. And I think a lot of things that they think about are like environmental factors. My uncle is a union worker. He was a steam fitter forever. So, you know, there's definitely different things that can affect I know you and I, Natalie talked about how veterans have a higher rate of diagnoses of ALS as well. So there's a lot of things outside of genetic factors, but on my father's side of the family, we actually ended up having a diagnosis of a c9 mutation, which is an open reading frame. Ation on your ninth chromosome. And that happened, I guess, with my uncle, I want to say, like 2017 my mom can probably confirm about in there. So we did learn of ALS and my dad's head to family prior to my grandmother's diagnosis, okay, but it kind of was almost felt like an odd coincidence. You know, we really never thought too hard about it, other than, well, that's really strange. That probably doesn't happen often. And we were at the same clinic with my grandmother that my uncle on my father's side had used, and I think they already kind of knew my family well enough, because my dad's side of the family had already been connected with them. So that was really a blessing for us, I think, in the long run, because we were familiar with how the clinic works and the people in it and everything but my dad's side of the family, my uncle found out about his genetic mutation just because there was a another brother of theirs who had, I think we don't really know the official diagnosis per se, but Some form of a dementia that, you know, led to his passing many years before that. You know, they would have never really connected it, had they not gone over that family history with my uncle, who had ALS. And from there, my dad and his siblings were tested for a genetic mutation. Everybody kind of had their own choice, which is really how the genetic counselors recommend that you do it, you know, there's no pressure to find out about your genetic mutation. My father's was positive and his other siblings were negative, which was, I think, a huge blessing as well. You know, I mean, unfortunate for my father, of course, but his siblings that were still, that are still living, were all negative. So we only had that one person who was really continuing from their siblings, and then from there, my sister and I chose to be tested for the same genetic mutation. I was positive. I won't share my sister's, you know, because that's, you know, her choice. But, and my brother has not been tested yet, which, again, you know, we support him with that, because it's really a very personal decision for every person who's in that position, because it can have a lot of effects. 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 was a genetic mutation for cancer, and that passed down from his grandmother to his mother, and he chose to be tested, and he knows that he's positive as well. And so I guess my question to you is, because this is really specific about your choice to be tested, and then how did that affect your decision making moving forward?

Unknown: 37:34

Yes, I feel like I'm just somebody who has to know everything. So I very much regardless of all the factors I think it would have chosen to be tested. I definitely don't think that might have been a healthy decision all the time, but it's worked out in the best for me. So I just really knew that I was in a really optimal position where, you know, I was young, I was, you know, not in a place where I was going to be, you know, with my long term my now spouse, at the time, I was kind of like, young single dating had a lot of privilege in knowing the information when I did to make decisions for my long term future, so I really took advantage of that with that I have now, why we say I always laugh. I was like, it's kind of worse than having, like, a permanent STD when you're in the dating world too, because I'm like, I feel like I have to reveal this giant secret about a terminal illness, just to know, you know, somebody is a good person and not going to leave me if I'm looking for a husband. So, you know, luckily, I found him, but I was very lucky with that, and we have worked to work through a fertility clinic in freezing embryos and testing them, testing and then freezing embryos to use in our future children to eliminate the genetic mutation. And that really came a lot from my sister started doing a similar path just with she was at a different time when we were getting our genetic testing done. She had just gotten married, and they were really ready to start having children, and so that was kind of the driving factor for her. And she had done a lot of research about, you know, depending on what that result is, you know, how would that affect their journey? And so she had kind of kicked that off. And then once I was kind of in a position where I was thinking about that, you know, I was able to 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, and people don't know that, that if you they may not know that you can, you can actually do that testing with that. You can do that 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 care conversation with your significant other, your boyfriend 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 have this pretty I'm very likely to have this pretty dastardly thing, and it's going. Be really hard, and it's going to be, it's going to be hard, it's going to be hard for me, but it's going to put you into a direct caregiver position. It really does help you feel like you found your lobster when they're like, Yeah, I don't I, I'm here with you. What was that conversation like? And how have you all planned, thinking forward 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 25 probably, or 26 this conversation. And for me, it was like I was at a point where I was like, Okay, I'm probably going to say I love you, and I think I want to, like, marry you at some point. And now I have to really reveal this giant secret before, because I have no interest in moving forward with somebody who you know isn't able to handle that, or who I don't perceive as being able to, yeah, appropriately handle that or support me through it. So I was super lucky, but yeah, I just had a really blunt which is kind of how I operate London, conversation about like, this is a real thing, and this is what will happen. And I know that it's not necessarily 100% for me, but I I speak of it like that so that there's no, you know, no shock to reality if and when it does happen. So, you know, I shared with him, you know, the research that I've done and what it means, and you know how detrimental this can be in the future, and what that would mean for us. And he's just the nicest person in the world. And he's a very strong, very, even healed very, I don't know just how to describe him, but he's like, not like me at all. I'm definitely we balance each other out quite a bit with that. So he definitely is somebody who, you know, knew right away that it didn't matter what I would have. Of course, he would support me through it. And, you know, as we very early on talk about marriage, which was also, again, not really my, my MO, previously to having this, you know, he was really focused on, you know, well, if we are talking about getting married, it's like through sickness and health and all the things. So that was very relieving to hear, because it almost unlocked, you know, the door into really being vulnerable and kind of moving our relationship to the next level in terms of, you know, a really long term strong relationship, rather than just dating at 25 or 26 but yeah, and then from there, I think things that we really now, especially after our wedding, was just in September. So a lot of things that we've already started thinking about is, you know, where we want to end up long term, for me, that means being near some kind of, you know, good health care facility. I think, I think that growing up in Philadelphia was a privilege for that and, of course, also, just to mention, I think is important that, like we grew up, we are privileged in a lot of ways when it comes to our access to health care. So not just being in Philadelphia, but there's many sides to Philadelphia, and we were very lucky to be in the working class that we were, and the color of our skin played a big role, of course, in our education and what led us to be able to be in the positions of being a nurse, and you know, the person that I am in my position to have not only knowledge, but access and support around us in terms of just all the privilege that comes with you know who you are and where you are. So I think that's really important to note that we've had probably a much easier time, even if it sounds like a challenging time that other people may have if they were going through what we have with, you know, a journey with ALS or the diagnosis, and especially access to really good health care, like a genetic counselor who can counsel you through all these things and talk to you about fertility and things like that. So it's been a big privilege to have that, but also to be able to then share that with you know, my sister and I, with our husbands and with our other family members who you know are really interested in learning and getting involved, our friends and we've taken a lot of steps to plan for being around like a major healthcare facility, probably on the East Coast, because I know that. I just know where certain clinics are, certain doctors that I would trust with my journey that I'm on. And then on top of that, I think, like financially planning, yeah, oh yeah, a lot, you know, making sure we have an account, a savings account that specifically is for healthcare and emergency funds for the future and things like that. My husband's extremely savvy with, you know, knowing how to navigate the financial world and long term planning and things, which, again, has been huge for me, because I was like, I would be, 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. You know, that is kind of key to what your future is, but you're optimistic So, but it also sounds like you have a lot of advocacy in your heart. Do I hear that when you talk about your privilege, but also color of skin, things like that? It seems like there's a lot of advocacy there. And what is your kind of look at the future? I mean, are you out there because of your field, or you're like, we are going to find a cure for this? 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 really trained to take a deeper dive into different advocacy groups. My mom and I are both peer mentors through I am ALS, which is who connected us with you all, and then just kind of making sure that I'm keeping up to date with. You know, what's happening in terms of, you know, different policies being passed, being involved with, you know, advocating with legislature, from writing letters and just being up to date on joining meetings and just showing support for any changes that are trying to be made. I'm a clinical study patient in a couple of different researches, research studies that are being done. I go to the NIH once a year for some couple days worth of appointments to make sure I'm kind of doing my part in contributing to the research that's happening. And then working with a couple of different a pharmaceutical company that's got a lot of good work going on, just working on like an advisory board with them, so that they keep the kind of mindset of patients and caregivers in their mind when they're planning their clinical trial out. Just kind of trying to dive into all the things that I can. And now recently, I've been kind of connecting with a few younger women that I was a panelist on University of Penn's webinar for familial ALS. To they kind of just do, like a update on research annually, and have different panelists come on and just kind of share their experience answer questions. And that's led to a lot of young women who are in the same position as I am, where they either found out that their parent has this or one of the other genetic mutations for ALS or FTD, and then, you know what that means for them, kind of helping them understand what happens if you have a positive result, what that can mean, how it can affect your long term insurance, your health, all the things that can kind of play a role. So that's been really nice to kind of connect with other younger women and hopefully guide them in a way that they can make, you know, informed decisions for themselves about what it means for their future if they were to be tested, or what 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, and this is what happens. But I knew this was going to happen, and so we're going to go over a little bit for folks, because I think there's some pieces that I want to make sure and go back to your mom. Hey, Maureen, still there, still here. And I love that. We're like, she's like, I'm still here. I'm still standing. I know I was gonna I knew I was gonna sing in this episode at some point. So there's so many great things that you ladies are doing. I'm really glad that you talked about peer support. And I know Maureen, you're doing peer support. And so I guess my question is going to be, tell me a little bit about how you doing peer support has really helped you. Because I know, you know, you may have thought, I'm not sure about this. So Maureen, can you tell me about your experience 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 you would really do well with this. Connected me with I m, a, l, s, I did the training and and got paired with a woman who absolutely is living my life as I did with my mom. Her situation is, is almost parallel with mine. Wow. It has allowed me to not just share like, the practices that I was able to do, and kind of look back on, you know, what worked for me, what didn't, to kind of share with her, to allow her this, this woman, to kind of look at the options on, how do you best prepare for this? You know? How do you communicate? How do you work with your siblings? How do you work with the healthcare field? What's available out there? I've kind of been able to lay that out for for her and her family, but it has also allowed some healing with me. It has allowed me to kind of, you know, get away from the fact that my mom passed from ALS, and look at, you know, that time that was spent with her before her diagnosis, during her diagnosis, and then absolutely that last week when Molly jumped in, and, you know, and I say, jumped in, you know, as Molly said, her and her cousins were there all along. They were along for the ride, right? They were there helping. But, you know, towards the end there, it really has allowed me to kind of look at that bigger picture and see that, you know, there were rough times. And there were times that if I could go back and change something, I may but, but generally, I had that time with my mom as both the caregiver, which is what she wanted, but also the daughter, and watched her, you know, become a great grandmother again. Surely after my mom passed, my first granddaughter was born, so she didn't get to meet her, but she was very active in that pregnancy, 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 in be the grandmother my mother was. I'll never, I'll never match 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 child that was or it has been diagnosed, or they found that mutation that could possibly, that could possibly lead to this type 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 quickly educated, and was educated on this c9 mutation, much deeper than I was at the beginning. She really helped me understand, you know, what I needed to learn, but really to be there, be open and be open to what each of the children want or don't want. You know, as Molly said, her and her sister chose to be tested. Her brother has not yet chosen that, but, but we all need to support each other, as it is. My husband is, you know, does have the genetic mutation. He's at the prime age where his brother started with symptoms, and again, it was very fast moving als that his brother passed with. So supporting him. He's involved in the research that Molly is, but just through another hospital. So kind of staying behind that and just being open to that and listen and become educated in this world of, you know, the unknown. I mean, this was something we did not know anything about prior to these, these situations.

Natalie: 51:35

And I'm going to end it with Molly too. Molly, any advice that you would give to someone, any advice from a caregiving standpoint that you would that you would offer,

Unknown: 51:51

I think learning how to be an advocate in whatever way that your loved one needs is really important. And for us, obviously, we have a few different people who we need to do that for. And I think meeting whichever person it is, you know, where they're at with their diagnosis is really important, but learning how you can be a partner and a pair with them in it, but remember that it's their experience, and you can be there to support them and learn how to be an advocate by maybe getting a different perspective that, you know, it's hard for somebody who has a diagnosis to understand, but, you know, let them lead the way and just learn ways that you can support them and be involved. But I think my mom and I have both learned especially the difference with my grandmother and my uncle, and then, you know, thinking about our own personalities, I think in the future of every journey is going to be extremely different and look very different. And there's ways to support and advocate for each different one. And I think that's the most powerful thing that you can really do for somebody who has a diagnosis like ALS, or really like any, you know, terminal or long term chronic illness.

Natalie: 53:05

So I will say this, we always ask the last question, and it is, what is your favorite guilty pleasure? And the reason I say that is because it's really how to use self care. What is the thing that you do just for yourself? Molly, and then Maureen, I'm going to come back to you. What's the thing that you do just for yourself that really is like, Oh, I love that. That's your self care. That's that's how you really respect, love and care for yourself.

Unknown: 53:30

So the thing about having a terminal genetic mutation is that I do many of those things, and then I get to blame it on the fact that I have ALS 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, but I do, I do get my my monthly facials that has been, oh, I support that of my care. And I take a lot of trips. I travel often. I love that very often. And that's where I spend most of my money. Oh,

Natalie: 54:01

I love it. I love it. Well, it helps. I mean, you know, at some point maybe you all have a plane, since your husband is conveniently a pilot, I will always say thank you for your service and to your husband for his service as well. And so much love to you guys, both and Maureen, tell me. Tell me about your self care. How do you take care of Maureen? What's your favorite thing that you do, just for yourself,

Unknown: 54:21

just for myself, something I picked up from my mother that I would have never guessed, that I would ever have any pleasure in, but getting my nails done on a regular basis, getting a man, 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. But when my mother did get sick and required some, some, you know, assistance to get to those places, the one place that she needed to be was to get her nails done. And she actually got her nails done on a Thursday and on Saturday, is when she took her drastic decline. So, you know, at this point, I make sure that my nails are. Done on a regular basis, and it really does, 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. I look at your past experiences, and they're so beneficial to everybody. You're present and what you're doing, your advocacy, your involvement in all these tests are amazing and your future, because I know that it's just going to be amazing, all of the things that you do, regardless of diagnosis, I just live 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 for joining us on this episode, and until we confess again, we will see you next time. Bye. Bye. Well, friends, that's a wrap on this week's confession. Thanks so much for listening in to the podcast. But before you go, please take a moment to leave us a review and tell your friends about the confession show. Don't forget visit our website to sign up for our newsletter, as well as connect with us on Facebook, Instagram, LinkedIn, Pinterest and Twitter. You'll also find the video recording of all of our episodes on the confessions website and our YouTube Channel. We'll see you next Tuesday, when we come together to confess again, Till then, take care of you. Okay, let's talk disclaimers. We are not medical professionals and are not providing any medical advice. If you have medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I, at confessions of our reluctant caregiver have taken care in selecting the speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this show are solely those of the contributors and not necessarily those of our distributors or hosting company. This podcast is copyrighted, and no part can be reproduced without the express written consent of the sisterhood of care LLC, thank you for listening to The Confessions of a reluctant caregiver podcast. You.