A Love to Remember: A Young Woman's Journey Caring for Her Partner Through ALS

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This week, Heidi McCann shares her story and her experience caring for her partner Curtis after he was diagnosed with ALS at 25. Heidi shares how she and Curtis met as teenagers in Vermont and maintained their relationship through college before Curtis began exhibiting symptoms of ALS. When he was diagnosed, Heidi left her job to care for Curtis full-time. She moved with him to his small hometown to be closer to his support system and cared for him over the next year as his condition deteriorated. Heidi and Curtis married 22 days before his passing to declare their commitment to one another.

After Curtis' death, Heidi found new love and purpose, going on to write a book about her caregiving journey of living with and preparing for the death of her partner from ALS. She married again and became a mother of four children. Heidi also now cares for her own mother, who has Parkinson's disease. Throughout the episode, Heidi emphasized the importance of self-care for caregivers and making future plans for support systems. She shares lessons learned from her extensive personal experience of caring for a terminally ill partner through the challenges of ALS.

About Heidi:

Born in Hartford, CT, Heidi Erdmann Vance McCann graduated from the Loomis Chaffee School, where she discovered the power of words. Observing humanity from a young age, her high school years shaped her voice and leadership skills. At Middlebury College, she refined her writing and athletic prowess. After working in development and coaching tennis, she cared for her boyfriend with ALS, ultimately founding a nonprofit in his honor after his passing at age 26.

Over time, Heidi remarried and earned a MALS degree with a concentration in creative writing from Dartmouth College. She returned to the development field at Loomis Chaffee, where she currently works and enjoys tutoring. Living in Simsbury, CT, with her husband, Paul, and their four children - Martha, Ava, Caroline, and James - along with their dogs, Bruin and Bauer, Heidi treasures family time. Setting aside an hour daily for physical activity, she often finds inspiration for future books during this time.

Transcript

Natalie: 0:03

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, laughs Now, let's get to today's confession

Unknown: 0:30

Good morning, Natalie.

Natalie: 0:33

How are you doing?

Unknown: 0:34

I'm fine. How are you?

Natalie: 0:36

Well do it. I feel well. No, no, it's not. I'm not feeling the singing. It might come right in between the middle

Unknown: 0:45

you just break out in song.

Natalie: 0:47

I'm gonna randomly break out in song.

Unknown: 0:49

Our guest is really going to love that.

Natalie: 0:52

What podcast is this? Like? What did I sign up for? Why is Natalie singing? Here? I could like vocal warmup like me, me, me, me

JJ: 1:01

and I kind of make a request. You know, when you break out in song I would like like an ode to me, which is Ain't no sunshine when you're gone. So if you could practice. Yeah, so

Natalie: 1:11

when she is gone? No, no, no, no. Okay, okay. J Stop. Stop. Stop. We're done. Okay, guys, we're sorry. Okay. We have an amazing guest today. Amazing. Guest and I when I met Heidi over the phone, we she told me a little bit about her story. J and it is unbelievable. That's I'll just leave it at that on believable. And I am so excited for her to confess because this is so good. So Jay, please tell us more about our guest Heidi McCann

JJ: 1:50

no problem. So I will say Natalie has a little more insight than me. She got the inside story. So I am really looking forward to this. today. We welcome Heidi McCann. So when her longtime boyfriend Curtis was diagnosed with ALS, Lou Gehrig's is a Heidi left her job to care for him. She was 23 and he was 25. They spent a year learning to live while preparing to die. And honey, that is such an insightful statement for me when I read it in your bio, I thought that's that's really something. It's something to really think about. You married 22 days before his death. At that time. Curtis was 26. And Heidi was 24. But that is not the end of hottie story. That's what's so beautiful about today. Today Hattie is a wife. She is a mother of four. She is a writer and her book is whatever the future holds. And it's a story of love. before, during and after ILS. How do you we are so happy to have you here with us today.

Heidi: 2:55

Thank you, I am so happy to be here.

Natalie: 2:58

Oh, I am going to tell you I have been so excited about this recording. I mean, I don't like to play favorites, because everybody's my favorite. But this was such a unique story. I know our listeners are like now like get on with it. So like, Oh my gosh. So Heidi, I would say you know, start from the beginning. But and so you were born. But your caregiving journey didn't start with start with with Curtis it started with about 50 stuffed animals.

Unknown: 3:34

It's I think it was 55 Isn't

Natalie: 3:37

55 stuffed animals. And so clearly, this was ingrained early on and tell us there were some nuggets of wisdom that your mom gave you that I think prepared you and set you up for the path that you've been led on. So tell us about. Tell us about those 55 Stuffed animals you were caring for it started early.

Unknown: 3:57

It did it did. I you know I can envision it. So clearly. I was in my home and in. I lived in Hartford, Connecticut. And I had, I'm a math person in addition to writing. So I remember clearly there were 55 all sorts of animals. And so when I was younger, probably around five or six, I would allow them to sleep on my bed and I would sleep on the floor because these babies had to be comfortable. And I think you know my memories not totally 100% from that long ago, but I imagine this went on for quite a while. And my mother came in and whatever day and basically said Heidi, what are you doing, you know, you're not sleeping in your bed, you must be tired, what's going on? And I said well, these animals they they need to sleep comfortably and there's no room for me plus all of them. And, and she's and she said Heidi, you have to take care of yourself first to be the best caregiver you can be and And you know, when when Kirk got sick and through some other things in my life when I've been a caregiver, my mother is still with us. She has Parkinson's. But she's she's doing great. And she's still reminds me of that. And it's I think it is so important because it is so true to really be able to care well, for others, you have to be taking care of yourself.

Natalie: 5:22

Look at that words of wisdom right from the get go. Right from the get go. Right. I

JJ: 5:27

will jump in and tell Heidi just going back to the stuffed animals because I always wanted to care as well. Heidi, however, I gave all my stuffed animals a bath. My Mom, seriously, he's still bitter about that. So we'll move on. She was not Yeah, that that was a trash bag.

Natalie: 5:43

Heidi, I did not know JJ gave our stuffed animals.

JJ: 5:47

It was bad. So that I will toss that in there. So yeah, I'm glad your mom is a super sweet. My mom was like the stuffed animals don't need a bath. So

Unknown: 5:56

because they never fully dry? No, they did not make. You know, those

Natalie: 6:01

are some nasty stuffed animals. So well. So fast forward. You know you you grew up you in Connecticut, and went to college. And you met Kurt, at some point. Tell us because let's fast forward. Let's fast forward a little. Sure.

Unknown: 6:20

I'll actually back up just a tad. So Kurt and I met when when I was 15. And he was 17. So we knew each other for a very long time before before he got sick. I grew up in Hartford, Connecticut, Curtis was from the Northeast Kingdom and Vermont. And my grandfather was born up there. And as a result, my parents had a cottage and my mom was a teacher. So we would spend our summers up in the Northeast Kingdom. So we met that first summer when I was 15. And he was 17. We dated and then we dated on and off. And one of the reasons I chose to go to college in Vermont was to be close to Kurt and we started dating my junior dating dating my junior year of college. Oh

Natalie: 7:04

my god, I felt like summer lovin over here. Like, tag me.

Unknown: 7:11

There's the song, hat and stuff. I'm

Natalie: 7:14

sorry. I love this. I love that you all I forgot that. I apologize for that. I love it sounds like this whole like romantic. Like, I feel like I can't remember the guy who writes all the love letter and all that stuff. What's whatever his name is. I felt like it's that. And I love lots of

Unknown: 7:31

teenage drama, a lot of TV. Absolutely. Absolutely. Okay. So, so yeah, you know, he had other girlfriends, I had some interest, but he was always my love. I mean, he was my first love. So after I graduated from school, he had a job in Essex junction, which is right outside of Burlington, Vermont, and we decided to move in together. So we were living together for a full year. And then he started to not feel well. And, you know, little, little things. In hindsight, that escalated really, really quickly. Meaning he worked construction on his days off from where he worked in Burlington. And so one day, literally one day, he went to step up a step with a concrete form on his shoulder and couldn't lift a leg. And then another day, he tripped, you know, walking out of the general store with a coffee in hand. So anyway, it took a couple of months to figure out what was going on. Yeah. And at the end, when he was diagnosed, he had a very progressive torn form of ALS. In his case, it was familial, meaning genetic, and he was given six to 12 months to live. And that was, I mean, just unbelievable, quite frankly, as me being who I am, I was okay, once we knew what it was those months of not understanding were super difficult, right? For everybody involved. But once we knew what it was, it was like, Okay, let's, let's make a plan. What are we going to do? And unfortunately, with ALS, at least as quickly as his progress, there weren't any plans. You just had to live day by day. But we did move out of our apartment in New Haven, Vermont, which is just north of Middlebury, Vermont, and moved to his hometown of Danville, which is in the Northeast Kingdom. So in the middle of nowhere, and you know, people have asked me over the years why, you know, he was your boyfriend, what, why did you do this? There was never a question. I never thought about it. I loved him. That's, that's what you do. Or at least that's how I felt. And then, you know, there was that beginning time, there was a lot of anger, a lot of confusion. And then there was a turning point where he really was like, Okay, this is the hand I was dealt, I'm going to make the most of it. And we became very spiritual, and spent time with people from all over the town, a friend of his wife I would do healing circles where we would, you know, have people just come to our home and send positive energy to Curtis. And that that was really the time when things became beautiful. Mm hmm.

JJ: 10:14

No, I love that. You know, first of all, it was never a question for you. And I think that's so important to never as a caregiver to never say I can only care for a family member and that we've all we've talked to so many people who have said, I decided to care for a neighbor, it was a co worker, it was this. And that, while this was, you know, this is a partner and you know, you basically, you're in a relationship where this is, you know, a husband of that sort of generality, but it doesn't have to be that sort of legal tie, I think is how we look at it. Caregivers come in all different shapes and forms and fashions. But you were, it's interesting, because you were like, tell me about your career that like Where were you guys, you he was working? What were you doing?

Unknown: 10:54

Yeah, what were you doing? Ah, great question. So I went to a Middlebury College in Middlebury, Vermont. And right before I graduated, they offered me a job in their development office, which is essentially fundraising for the lack of a better description, but it's really relationship building. And they offered me that job because I had worked on the senior gift. And we the reason I worked on the senior gift was because we wanted to have it be in honor and memory of a classmate, we had lost our junior year. And that meant a lot to me. So that that's what I did. I also played tennis and squash at Middlebury when I was in college, and the tennis team needed an assistant coach. So I was doing development work and also coaching. Interestingly enough, after nine months of development work, I decided this is this is not for me, it would have been in the office is not for me. And so I was coaching tennis and teaching tennis full time when Kirk got sick. Oh, I was actually I brought the boys down to Nashville, Tennessee that fall when Kurt started to not feel well to compete. And it was just it was a really exciting time. And again, though, you know, in hindsight, I'm like, wow, that that was a lot to give up. But in the moment, it just it never even it just I just did it. So

Natalie: 12:14

it never occurred to you. Like, maybe this is his family's responsibility. Maybe this is I mean, because you didn't move back to where he lives. So that's helpful. But nobody, like you're not married and in society's eyes are like, Oh, well, I mean, we'd get it if he left. Like, I mean, yeah, you liked him. But I mean, you're not married. So you know what I mean?

Unknown: 12:35

I do know what you mean. Yes. And so his, his town is very small. His parents lived there. His two of his older brothers lived there. He was the middle of five boys. And so yes, it that it's such a good question. So we ended up moving into his aunt and uncle's home that he had actually built with the company that he worked for on his days off from his other job. And it was right actually in the middle of in proximity. It was right by his brothers, right by his parents, you know, a two minute drive. Yeah, minute drive. And there during in that moment, yes. There were times that I would say what is going on? Why am I doing this, especially when things got really tough physically, right. And they were they his family was very much present. They were there. The ins and outs of caring for him. They were they were not part of that. i In the moment I thought a lot about in this case, it was a familial disease. Als had inflicted his ancestors back to the 1800s according to their records. Wow. They did not know that it was ALS. They weren't fully aware of it, it ended up. It's actually a fascinating story, although it's very tragic. When Kurt was officially diagnosed at Mass General in Boston, which is where we went to be treated. They actually had historical documents from his family dating back to the 1800s. And when Curtis's grandmother got the disease. So this was his mom's mom, her mother who had researched and had this knowledge of a disease, a paralyzing disease, which is what they called it back then, that had inflicted answers just before. She basically you know, took Kurt's mom and her siblings aside and said, don't have children, your mother is dying from something that so many other ancestors have. But again, there was no tag on it. Nobody understood it. Exactly. It's so when Kurt did get sick, I always thought of it in the sense of this is too much. It's too much for his family to physically see day in and day out, or moment by moment, because they could have it themselves. They and I think that that adds a layer that, even though I was 23, and probably didn't think all of that through, I felt it. And there were there were certainly some tense moments over that year. There's no doubt about it. I have remained very close with his family and, and I and that's very important to me. And they're very supportive of my current husband and my children. And that's really special to me. Oh,

Natalie: 15:22

I, I love that. I that is so interesting. Jay, I know we need to take a break real quick. We'll be right back. And let's pick right back up when we get back. I don't know about you. But my inbox is always cluttered with useless emails. But there's one. Always Open The Confessions of a reluctant caregiver newsletter. You may say, Natalie, what makes you so special? Well, I'm biased, but don't just take my word for it. Here's what our subscribers say they love. First, it comes once per month, and you can read it in under five minutes. Next, you'll find amazing tips and resources to use in your everyday life. And who doesn't love a recommendation the sisters do, which is why we share sister approved products and discount leads to save you time and money. And of course, your first know about the upcoming months confessions. Just like our show, you're guaranteed to relate. Be inspired, leave with helpful tips and resources and of course lab. Go to our website Confessions of a reluctant caregiver.com to sign up for our newsletter today.

JJ: 16:38

Hey, everybody, we are back here and we're talking with Heidi McCann and a diagnosis for a boyfriend that has was diagnosed with MLS ALS, I'm sorry, I'm sorry, ALS, and Lou Gehrig's. But we talked about the before. And now we're in the Dearing. So that's kind of where we left off.

Natalie: 16:59

It's almost sounds a little bit like Sue Ryan J when she talks about radical acceptance. And a colleague of ours talks about about having that acceptance. And that's what it sounds like, like you guys did, because I'm not gonna lie to you. If I'm 23, and I'm with my boyfriend, we're not married. Yes, we've known each other a long time. That puts a lot of pressure on a relationship. Do you ever have in your mind, though? Do you ever go to those places? You're like, what am I doing? Like, what if I just, I just I want to go over here and hang out and hide for a while, or I'll just drive off and then just see what happens. You know what I mean? Like, there are times that I wouldn't do that when I was in New York, I just wander around the streets in my little hood in my two block radius, because Jason would follow me to make sure I didn't get killed. And I just be like, I'm just gonna go and just pretend for a while and a couple of blocks are false

Unknown: 17:55

100%. So there's, there's one moment that sticks out for me. And again, so many of these memories, although this was almost 25 years ago, so many of these memories are so fresh, because it did take me so long to write the book. So I have relived it over and over again. But so with Kurt in our situation again, when when we kind of came both of us to that acceptance and we became very spiritual. Along with that came this is optimism, this feeling of number one, we can beat this. So we did do a ton of alternative therapies and spiritual things were and he was on a clinical trial through MassGeneral. So there was always that little bit of hope. And he had it probably more than I did in all honesty, but I I went with him because you have to because the minute you start to go down that rabbit hole of this is a terminal illness I've been given six to 12 months to live. Life was pretty miserable. So we we lived we lived as though we could beat it. There was one day. I mean, there were a lot of these moments but one that really sticks out to me I had just wheeled him down probably about I don't know maybe a quarter of a mile half a mile to the local restaurant where we love to go the owner there built a ramp for him so we could go up and which was I mean, this town was Danville Vermont is an amazing place. We love the dam so much part of our story. Oh, love it. And so anyway, we went down to the Danville in we had a had a tough breakfast because physically Curtis was really struggling, wheeled him back and on and I had to wheel him backwards in the wheelchair because I didn't have the strength to wheel him forward. So we'd have to take the brakes off tip and backwards and go and so afterwards he ended up I wasn't watching I didn't put those non tipping you know things back in and he ended up tipping backwards and hitting his head and if the whole thing was awful, and so then he was in a super bad mood, understandably So as i And so long story short, we got into an argument. And he just said, Leave go, I want to be alone. And at that point in time, he was on an external respiratory aid that had a mask over his nose, and then a tube and the tube would always pop off. And if it popped off, and no one was there, he wouldn't get his air and he would die. And so I said, Curtis, you, I can't go anywhere. And he finally said, I just need you to leave. So I left and I went to another couple of miles up the road to where my parents family cottages and I play tennis and I went, waterskiing, and the freedom, the freedom of those hour or two, I've been caring for Curtis for about six, eight months at the time, maybe seven, to all of a sudden not be caring for somebody every moment. And I thought, I'm going to leave, I'm going to go back and I'm going to tell Kurt, this is this, I can't do this anymore. And I went back. And I think that was the first time we were away from each other for a couple of hours since he was diagnosed. And he's just looked at me and he said, I can't do this with without you. And I said, Well, I can't do this without you. And I'm afraid to lose you. And I think it'll be easier if I go now. Oh, and it was it was a big moment. And of course, you know, I didn't, I did say we can't be negative, we can't get angry at each other. Because if that's the way it's going to go, then I will leave. Because that's that's not what we're here for. We're here to be living, you know, learning to live while we're preparing to die. So that. And then there were moments and it was always when we were angry and tired and frustrated. And all of those terrible things that you experience when you're living with with an illness.

JJ: 21:42

How do you do you think at that moment, and looking back, you would have what you would have raised your hand and said, Hey, I need for you guys, a family member, a friend, someone in town to say, can you come over here, I need you for four hours or two hours, or I just need to go play a game of tennis, would that have changed a lot of that scenario, a lot of those dynamics for you.

Unknown: 22:04

Yes, and we were supportive. These were the important pieces. And this is definitely something that I would encourage any and everybody to look for and to to ask for and to demand really, because there are always people around looking to help. So we had a neighbor, Michelle, who was a godsend. And she she would come over and clean. And she would say, you know, and she would hang out and talk with us while she was doing that. Because again, you know, with ALS, you're constantly, I was physically caring for him for the majority of the disease. So you couldn't just sit there and clean because you'd have to watch him. And so things like that I always had somebody for about one hour a day, maybe 45 minutes so that I could get out and move. Exercise is extremely important to me, it has always been since I was little. And it continues to be now that I'm almost you know, 50 It's super important. And I knew in terms of going back to that thought of I have to take care of myself to be able to take care of you. If I didn't get that almost hour of movement. I was a very different person and my heads my my mental state was very different. So I did and there were people that would come for for that time. And that that made a big, big difference.

JJ: 23:19

So we've kind of transitioned here where you all have had a talk and you're like he can't he says he can't do it without you and you're like I'm afraid I think you've really addressed some significant issues. There's a moment where what leads up to you saying, you both decided you're going to get let's

Natalie: 23:37

get married. Let's do this.

Unknown: 23:40

Let's do it.

Natalie: 23:40

Let's do it. Why does Do you know what I mean? Like why then why not? Like I say why not? Yeah.

Unknown: 23:48

That's exactly right. That's exactly right. So before Kurt got sick, I was talking marriage, you know, again, my 55 stuffed animals. I always want to children. I wanted a family. That's been education, super important to me, a career of some sort, always super important, but the core of me wanted a family and I loved Curtis Vance. So getting married was on my docket. It was something I really wanted to do. It was a plan. We gotta we gotta do the plan. So you know, even after even after he got sick, I would bring it up. I would bring it up not all the time, but some of it was legality. I mean, we there were a lot of things going on, especially with ALS. You know, he at the very beginning chosen that he did not you know, he wrote a living wheel saying he didn't want a feeding tube and he didn't want it a trach which can extend someone's life with ALS. And then it was kind of like okay, well, what right do I have, you know, all those sorts of things. So we ended up taking rights, we ended up take care of the legality in terms of I became power of attorney, all of that. So that wasn't the reason because we although we were young, we realized how to do all of that legally. So the real thing was in October of 1999, he ended and this was now almost a year from when he was diagnosed. And he was having trouble swallowing and eating. And drinking, quite frankly. And so although he had always said no feeding tube, no trach, we went down to Mass General on our monthly visit and and I loved the people, they are still love them, keep in touch with some of them. And essentially, they said, you know, listen, a feeding tube is really a good idea. And they encrypted, okay, but I don't want the trach. And so they said, well, it's better to die of respiratory distress than dehydration and malnutrition. So he chose the feeding tube. And he chose it very late, very late in the disease, if you compare it to when others would, and he could not be fully sedated for that surgery, and he wanted me in there for it. And so I was in there for it. And at one moment in time, they basically pushed me out because they were going to lose him. And he almost died three times when he got that feeding tube. And when he came out, he was basically like, we're doing this, we're getting married. And it was very much a spiritual moment. It was we we have to declare, we are not we were not very religious people. But we are very spiritual. And it was like, we just have to do this. We have to do this for us. We want to be united in eternity. And that was it. Yeah. Well,

JJ: 26:34

so you get married. And then what happens because I know the after of this, and I know you touch on this in your book, you that's a big part of your story, Heidi, and that's what I love, because we want to get through this part. But I want to talk about after because your life like what I said in the intro, your life did not stop you have grown and you have continued. So tell me about that.

Unknown: 26:57

Yeah, sure. So, yes, so we got we got married. And I think I believe very strongly that one can can have a play a play in their in their end. And I do think that being married was very important to Curtis and he died 22 days later, he never did get that trait because he didn't want it. He died in our home that we were living in which was super important. And so the year after Kurt was gone was extremely difficult for me much more difficult than the year that he was sick 100% I learned a ton about grief, I learned a ton about just being able to deal with those feelings of thinking you're going to be alone and missing that person that is though is the one person that you're you're with all the time and you tell everything to all that sort of thing. Right and so I I believe very strongly in that Curtis was with me. He's still with me. He guides me we talked to one another much more back then than now but he's he's still right here. And so I do believe strongly that he helped bring Paul into my life. You know, after Kurt died, I never even considered dating or anything for I don't know probably about a year I Curtis and I did start a nonprofit foundation, which is no longer is no longer a 501 C three I have I have let that slip by. But in the for those for that first year, year and a half after Kurt died. That was huge. It kept me going it got me up. It was very important to Kurt for us to raise money for this disease and for caring for people with this disease became primarily because of our experience, but also because he knew there was a very good chance other people in his family would live through this. So that was that kept me going. And I did meet a couple of people through doing events all around the country, which is what I was doing for the foundation, reconnecting with high school and college friends who were living very different lives than I was at the time. But they were very accepting and met me where I was and supported me. And so I did meet a couple of people and then and never thought much of anything. I figured I would if I ever have another relationship it'll be with somebody older, probably divorced, you know, something like that or widowed?

JJ: 29:21

It was gonna be I gotcha, Heidi. You laid out the plan but that wasn't the plan. I got Yeah, it was

Unknown: 29:28

not it was not I ended up meeting somebody two years younger than then myself and in his in his case, his mom at the time was battling cancer. And so we kind of met on that level and and it's a wonderful story. My my uncle worked for a company that was having a happy hour for somebody's birthday. It was actually my my now husband's birthday. And he said you need to come I have four eligible bachelors, and I thought Oh, Uncle Paul. No, I am nowhere ready for this So he said, you're coming. And so my mother said, what's the worst that can happen? Another great piece of advice from a mom, what's the worst that can happen? You need to go. And so anyway, I met all the bachelors met Paul last and I was kind of tired. It was later on in the evening, he was late to his own party, which is a very, very typical Paul. And he basically he says, So what's your story? What's going on? And I said, I'm a 25 year old widow. And he said, Tell me about it. And that that was how we met. Wow. How long have you been married? 20 years. We celebrated 20 years in November.

JJ: 30:42

Wow. Wow. All right, Natalie, we're gonna need to take a break because we're in the after stage. And that's what we're talking about.

Natalie: 30:51

Yeah, I guess let's take a break.

Unknown: 30:57

If you like confessions, we have another podcast. We'd love to recommend the happy healthy caregiver podcast with Elizabeth Miller as a fellow homecare network podcaster. We love how Elizabeth chatted up with family caregivers and dives into their caregiving and self care strategies. Just like us. Elizabeth believes that family caregivers are the experts in caregiving. Beyond the informative conversations, Elizabeth reveals the tried and true resources and practical self care tips that empower caregivers to prioritize their health and happiness. You can find the happy, healthy caregiver podcast wherever you download your favorite podcast, or go to the website at Happy Healthy caregiver.com.

JJ: 31:45

All right, everybody, we are back here with confessions. We're here with Heidi McCann. We've gotten through the before we're in the Dearing and now we're in the after the stages after ALS, and Heidi has met someone and her introduction was a 25 year old widow. And he said tell me about it. And that's an opening. Isn't

Natalie: 32:05

that interesting? Isn't that interesting? Because most people will be like, alright, well, I'm gonna just go over here to the other side of the bar. That's really nice meeting away from that lady. We're not sure what happened with her.

JJ: 32:20

So how do you how did you know you tell the story. And you guys have been married 20 years now. And I feel like this story is really woven in your relationship. And you've written the book, you have chilled your four kids and two dogs.

Natalie: 32:34

Yes. I mean, you got you got what you want. You got lots of kids.

JJ: 32:39

It's woven in your life. And tell me about what caregiving that caregiving did for you that year. But then you've got your you mentioned, your mom has Parkinson's? Of course, tell me, there's so much to tell me about the after. But kind of tell me how this is woven into these these past 22 years? Oh, yes.

Unknown: 33:01

So I think that, certainly that the entire experience of caring for Curtis living through a terminal illness, living learning to live while preparing to die, because I really was preparing to die myself because Curtis and I were so in it together. So when I woke up the day after he died and realized I was still alive, which was which was a really, it was a poignant moment. And I said, I am going to live life for both of us. And that's what I do. I mean, I Curtis is is inside my soul. I don't know any other way. This is when I'll cry because I feel I feel him all the time. And I knew that if I were to move on with my life, I would do it for myself. And I would do it in honor of Curtis in honor of a life that he couldn't live. And I was very clear about that with Paul, there was never, you know, we when we first started dating hours and hours and hours of conversations, and I would tell him my story and then that and then we certainly shifted and that was over, I was able to get that done. And now we were going to start our own life. But that that caregiving. You know, I take care of Paul, as you know, as many wives may take care of their husbands and he he takes care of me. I think what I learned from my experience with Curtis the way that I cared for him and kept him alive physically. Paul keeps me alive emotionally. And I wouldn't have recognized that if I hadn't gone through what I went through with Curtis and I don't think I would have looked for somebody or settled with somebody settle down with somebody who could do that for me if I hadn't experienced what I had experienced. And Paul is an amazing soul. He's I don't know what else to say beyond that. He he he understands me

JJ: 34:59

whatever Have a thought I'm sitting here to actually thinking about my own husband, Natalie, don't tell him that I'm thinking positive thoughts about I know that there are people that keep you alive physically, but people that keep you alive emotionally, that really support you in that manner. Heidi, that's that is that is your partner like that is who you are, you all have your strengths. So that is that is really touching that I love that Curtis is with you. And I think about that with dad. And I'd like because, you know, you say it's, well, it's a parent figure, I always know, you know, people might think I'm crazy. I had a, a dabbing experience. For example, I had an issue with being out too far in the water and getting beat Running low on air. And my husband was with me, and it was a little treacherous situation. But I will say that the only person that I was talking to at that moment was I was really a little fearful for my wife. I'm a little dramatic. I was like, I think this is this is it, Lord. But I was Dexter said, You know what you did? And I said, what he said, you were talking to your dad, like dad, you know, if you could just help me. And I think about that now. And I was like, Why was I talking to dad, but I feel like he's always there with me. So that's kind of a somebody that impacts your wife like that. I love that. He's that he's in your show like that. So. So you've got four kids, two dogs, your mom has told you that caregivers need to take care of themselves so they can take care of others. Can you tell me a little bit about where you are with your mom right now? Yes,

Unknown: 36:24

yes. So my mom is 10 years into Parkinson's. And she is physically she is 100% mobile. So she is you know, need some help with, you know, putting earrings on or buttoning a shirt, stuff like that. Yeah, but she um, so she lives in a Florida the majority of the time and in Vermont. And also they built a an in law suite off the back of our house here in Simsbury, Connecticut. And that is something that came about because of my experience with Curtis. So when when my mom was first diagnosed, and then a couple later, years later when when they were retiring, and they were living in downtown Hartford, and wanted to move out of there. And so we had a discussion, we had many discussions and I essentially said, You need to plan now you don't you don't want to be scrambling that that's with a physical illness. That is one of the things if anything I learned if you can set things up now. So they ended up knowing they you know, they're very privileged, they're very fortunate to have these homes. And they said, but let's let's create a space that is 100% handicap accessible. Should she need it? Because I said, Mom, I will care for you when the time comes. But I have four kids and two dogs right now. And so if you can be in where where I am, because I don't think I can go to where you would be. And that's why they built the space. And thankfully, it's not needed. You know, she doesn't need a winner in full time caregiver at this point. But it's set up for it.

JJ: 37:58

I think I'm always like talking questions for Heidi. So I do have one question, then I'm gonna stop talking. So here's my question. So you have siblings? I know you have two sisters, I kind of have the answer this. You said, Mom, I'll take care of you. Was did everybody else say absolutely. Hi to you? Can

Natalie: 38:15

they just like push you forward? Like go Heidi go?

Unknown: 38:19

What was curious about that? How did that work? I think it was expected. I am I'm the middle of middle girl of three of three girls. And you know, we all here metals are the best. Yes. We all bring something to the table. Right? We all do. And and I think that my what I bring to the table in terms of my original family unit is, you know, I'm the mediator. I'm the Peacekeeper, I'm the doer. So I think it wasn't an issue. It was just like, yes, you will, then that makes sense. And my older sister very well may be somebody who physically she cared for my grandmother. When my grandmother was here. She lived a very long life till she was 91 needed some help the last few years and she lived with my parents. But my sister is the one who who cared for her. So I do see my older sister taking part but not living with my parents. Yeah.

Natalie: 39:21

Isn't that interesting? It's you know, and we have our we all have our jobs, you know what I mean? Like we have our duties like we have our we know our skill set, we know where we lean in and that sort of thing. And so it's it's always interesting to be like, Oh, of course and the Schlissel sisters, they're some of our favorite they're, they're about they're just a text younger than us by 10. But those sisters or 20 I have like whatever and but those sisters are also caring for their brother who's has as disabled and then also thinking about their mom the conversations that we have like, they're like and you've just But in this place where you care, because the reality is, is that you know, you've had this lived experience, and it's just carried over and over and over. Yeah, I just Oh, yeah. So Jay, I mean, I don't mind to tell everybody my power went out. And so I, my power went out and it clicked. And so my timer stopped over again. And I want to make sure that we're not overdoing it. So sadly,

JJ: 40:24

so we will certainly do that. If everybody was curious about why I got to talk today. It was Natalie last.

Natalie: 40:31

I was I lost power. And so everybody's welcome. So now you got to know what JJ sounds like. But okay, so let's do sister questions. And Jaya fields, just make sure keep an eye on it for our friends, like we tried to do to run 45 minutes, but don't worry, we'll be back after the confession. So we'll, we'll have more to share. Because there's more with Heidi that I know that I want to ask about. So okay, take

JJ: 40:54

so many and now I'm like, Okay, I just went ahead and jumped in there and ask them, um, let me think. I think go tipsy. Oh, Tipsy is good. Yeah. So tip that you would give someone that's, you talked about planning for the house, now with your mom, but tips that you would give someone that are, especially a younger mom, tips that you would give someone going into a journey like this, Heidi?

Unknown: 41:23

Yeah. So I think that make a list, make a list of of what you need, in any given moment. And that list is going to change daily or weekly or monthly, whatever your situation, because people are always going to say to you, what can I do? And you never have an answer. And in my experience, it's the people that just do things that end up being the ones that that are that are the helpers, because you as a caregiver don't have the time or the energy or whatever to do it. If you make a list, though, if you really think about it, like what what do I need? I think that because people want to help. They want to help. So I would now have I done that later on in my life. No, but I think yeah, with your kids, Heidi make

Natalie: 42:20

a good idea. Well,

Unknown: 42:22

I am very proud to say for kids, as you know, eight and three quarters spread between eldest and youngest. I will say my children all do their laundry once they hit fifth grade. They do their own laundry, and they make their own lunches from sixth grade on because it's the only way it works. Are they for rent? Can we borrow this?

Natalie: 42:44

I think those kids need to be my caregiver because Jason I don't have kids. So we'll get them as well. They can be our kids will take them. I take a lot of people's kids though, I got to hedge my bets. Not sure about my nephews and nieces. If I need them. I'm gonna need them to step up for it. Nattie okay. You're your question. So, here's my question. And this is always the favorite. And then we'll go back into after confessions because there's more to talk about, but what is your favorite guilty pleasure? The one thing that you do just for yourself?

Unknown: 43:16

Oh, I love that question. And it's so boring. So I wish it were better. But I mean, honestly, the number the number one thing is for me it's exercise and ideally being outside. For that exercise. I am a little bit of a gym rat. I love kickboxing. It's my favorite class. But I love to be outside. So you know when when Kurt was sick, we did get a puppy and I had we had woowoo with us and so during that time that I would get out once a day it was always with woowoo and we'd go into the into the woods. And that that is a guilty pleasure of mine. I absolutely love it. I also love chocolate so I do not drink I do not drink coffee. I love the smell of it don't like the taste. I'm a tea drinker but I get my caffeine from chocolate because I eat enough of it.

JJ: 44:08

I'm telling you that I think out of everybody that coffee chocolate may be the highlight week Hershey's who else Ghiradelli.

Natalie: 44:16

Who else gets ready loves lit. If lent would like to sponsor us you can because I love you. I mean, we I am. I don't eat milk chocolate sponsorship

JJ: 44:27

from Heidi's podcast for life. Hi to your sponsor done you will get your chocolates.

Natalie: 44:33

Austin, thanks so much for being with us. This has been fan tastic. And guys, stick around. We're going to do after the confession where Heidi is going to chat a little bit longer. There's more questions. There's more stuff to be told because Heidi has a daughter and a daughter who she supports through long COVID And there's your teaser. So guys, thanks so much for being with us. Heidi, thanks for being with us. We will make sure the book and all your contacts are in the show notes and we will see you next time when we confess again, bye bye. Well, friends, that's a wrap on this week's confession. Again, thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find a video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details are included in the show notes below.

Unknown: 45:37

We'll see you next Tuesday when we come together to confess again, till then take care of you.

Natalie: 45:46

Okay, let's talk disclaimers. You may be surprised to find out but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I at Confessions of a 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 podcast 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 expressed written consent of the sisterhood of care LLC. Thank you for listening to The Confessions of a reluctant caregiver podcast.