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Caregiving often takes on a different meaning when faced with the challenges of rare conditions, as highlighted by Shelly and her guest, Allison Breininger. They explore the concept of "YOLO" (You Only Live Once) and how it transforms in the lives of caregivers, emphasizing the need to find joy in small moments rather than grand adventures. Allison shares her personal journey of caregiving for her husband, Sean, who has a rare genetic disease, illuminating the struggles and triumphs that come with that role. The discussion delves into the importance of painting a realistic picture for friends and family about the demands and energy required in caregiving, fostering understanding and empathy. Throughout the conversation, both women encourage caregivers to seek out little joys and connections in their daily lives, reinforcing that self-care and community support are vital in navigating the complexities of caregiving.

Shelly and Allison engage in a heartfelt dialogue that centers around the often-misunderstood world of caregiving, particularly how it impacts relationships and personal well-being. Through their shared experiences, they illuminate the challenges caregivers face in maintaining a sense of normalcy while managing the extensive demands of their roles. The discussion poignantly addresses the shift in lifestyle that occurs when one partner becomes a caregiver, emphasizing the emotional upheaval and the need to adapt to new realities. They explore the psychological burden that comes with constant vigilance and the fear of illness, highlighting how caregivers often prioritize the well-being of their loved ones over their own, leading to feelings of isolation and burnout.

Allison reflects on her journey as a caregiver for her husband, Sean, who battles a rare genetic disease. She candidly shares the strain it has placed on her life, including the need to constantly advocate for his health needs while also managing her own emotions and expectations. This episode serves as a powerful reminder that caregivers are also individuals with their own needs and feelings, often neglected in the caregiving narrative. The conversation flows into practical advice on how caregivers can seek support, the significance of community, and the need for open dialogues within social circles about the realities of caregiving. By the episode's conclusion, listeners are left with a profound understanding of the caregiver experience and a call to action to support those who are often the unsung heroes in the healthcare landscape.

Takeaways:

• Caregivers often feel overlooked and under-supported, despite being vital to their loved ones' well-being.
• The concept of 'YOLO' takes on a different meaning for caregivers, emphasizing the need for careful planning.
• It's important for caregivers to communicate their needs and experiences to friends and family.
• Caregiving can lead to a heightened sense of anxiety, impacting both physical and mental health.
• Finding joy in small moments can significantly boost a caregiver's morale and well-being.
• Creating space for honest discussions about caregiving challenges can foster greater understanding and support.

Hey friends, and welcome back to another episode of empower her wellness.

I'm so glad you've joined me today.

I am Shelly, your host, and I have with me Allison Breininger.

I found Allison online when I was doing research into caregiving, and I just see her as a big, bold, bright light in the world of caregiving.

Before I go on, I want to remind you, you can support this podcast with your money and with sharing and with commenting and with liking.

I have this podcast because first of all, I love doing this.

I love talking to all sorts of people and putting information out there.

And I don't have a job at the moment.

I am not getting paid for caregiving, so any support I can get from this podcast would be greatly appreciated.

If you want to support with your dollars, the link is down below in the show notes.

Okay, so Allison, before she became a caregiver for her husband Sean, she spent 20 years teaching, training, directing, coaching, and creating content within the realm of education.

She became a caregiver for her husband Sean when he was diagnosed with a rare genetic disease called fanconi anemia.

So since she's been caregiving for him for the last 14 years, he has gone through a bone marrow transplant, cancer of the tongue, throat, gums, bladder and skin.

So during these years, Allison really experienced firsthand that caregivers are in what she calls the negative space.

We are vital, yet we are overlooked and under supported.

So, fueled by what she saw and what she was going through, Allison founded the nonprofit the negative space as a way to use her experience and skills to change the way caregivers are seen and supported.

She also hosts the In Sickness podcast, where she provides individual coaching to caregivers nationwide.

She facilitates support groups, education, set sessions, and partners with multiple organizations to more intentionally support caregivers.

Alice and I, in this episode, we talk about what YOlO, you only live once, looks like to caregivers.

And while Steve and I had a very active social life before, always going to music, going to friends, deciding on a Wednesday night, we'd go to Lindbergh's and listen to music, we try to incorporate Yolo, you only live once into our lives now.

It really looks a lot different because of the preparation of what we have to take before we leave, where we're going to stay, and if that's going to be suitable for Steve and for me as a caregiver as well, and then also, how is that going to make Steve feel in regards to his energy level?

Is this little trek out into the world going to be worth all the energy that Steve and I both actually use up.

It was a really great episode.

I'm going to put all of Allison's information down the show notes.

I highly recommend that you take a peek at her website, the negative space.

And if you are a caregiver, definitely check out her in Sickness podcast and sign up to get on the online support groups.

All that information will be down below in the show notes.

Okay, friends, on to my conversation with Allison.

Hey, friends, welcome back to the podcast.

Empower her wellness.

I am so excited to have Allison with me today of the negative space.

I actually found you, Allison, on another podcast, and then I started trolling you on facebook.

I'm so glad.

And found the negative space and done some of your support group things and listened to your podcast.

So I just love what you're doing, and I just feel like you're like a big, bright shining light in the world of caregivers.

Oh, thank you.

I'm so honored that you are here with me.

And before we get started, one of the things Alison I talked about was, as caregivers, we both were able to connect and not have to cancel once.

It's true.

So if we can get through this without interruptions, we're gonna go buy lottery tickets.

I know.

That's why I said we gotta not celebrate till the hour is over.

And then, you know, then we can celebrate.

Then we can celebrate the lottery ticks.

But seriously, Allison, I'm so honored that you're here.

Thank you so much.

Oh, thanks for asking me.

I'm happy to be here.

So if you just wanna tell us briefly about your caregiving journey.

Cause I know it's been a long one, for 14 years with your husband, Sean, and then just briefly about his chronic condition, because it's just super rare.

And I'm sure that's been a struggle with you guys and medical and getting people to understand what all that entails.

So, yeah.

The floor now.

Yeah.

Thank you.

Thanks so much for having me.

So, I'm a caregiver for my husband, Sean.

He's 45.

And so that causes bone marrow failure, and then it causes cancer at a rate of around 700 times that of the rest of us because it's a DNA breakage syndrome.

And so, you know, we're all hit with things all day.

Pollution, smoke, alcohol, all the things, right, that.

That break down our DNA, sun, all of that.

But our DNA is good at rebuilding and repairing, and his is not and so that, therefore, the cancer is really, really prevalent.

It's really rare disease.

It's rare to be diagnosed at this older age like he is.

And so, like you said, that's been a complication of just trying to.

In some of these situations, he's been like an n of one.

Right.

Trying to.

A guinea pig, trying to figure out what to do.

So right after his diagnosis, which was hard to obtain because it's so rare, they discovered that he was getting close to bone marrow failure and needed a transplant.

So he had a bone marrow transplant.

His brother was his donor.

That in itself was enough to just about do us all in.

But at this point, that feels like, oh, yeah, I guess we did that because so much has happened since then.

So that quote solved the bone marrow issue for him, but with that came all kinds of extra complications and graft versus host disease.

He needed a hip replacement.

He needed cataract surgery.

So that was a whole season of our life.

And I should mention that at that time, we have a daughter who is going to college next week, so that's the whole thing.

But she, at that time of the transplant was four.

We had just adopted her from Haiti, and so it was like a whole thing.

So.

So parenting on top of it all.

Yeah.

Um, so he had the transplant, and then, since then, has had all of the cancers.

So.

And when I say that, I mean, it's.

It's really true.

So he had tongue cancer and had to have half of his tongue removed and all of the lymph nodes.

He had throat cancer twice.

One time it was operable.

The other time it wasn't.

And he had to have radiation, which is not something they typically want people with Fa to do, but he had to.

So he did it, and he survived.

And so, again, like, that was an n of one kind of situation.

He had bladder cancer and had his bladder removed.

He's had multiple gum cancers.

This last fall, he had esophageal cancer, and he's had about 150 skin cancers.

Yeah.

Um, so just thing after thing after thing after thing for the last 13 years, just kind of nonstop.

And so in my early thirties, here I was, this young new mom, and just was thrust into this role of being a caregiver.

I had no medical training, did not expect this to be my life.

Um, and yet here I am as a caregiver, doing all the kinds of the wound care and the iv hookups and the things that I would have never expected to be doing.

Oh, wow.

What a journey that you've been on yeah, yeah, absolutely.

So I, you know, the rare aspect of it because one that, you know, one of the things I found is that we, I've seen a lot of resources for caregivers who care for their parents with dementia, Alzheimer's, or, you know, spouses whose I, um, partner have cancer.

Sure.

So we really understand those.

Well, understand those illnesses to a better extent.

We're getting better.

Yeah.

Yeah.

Like these rare things.

And like Sean, Steve was 75 when he was, when it's, it's, it's a.

The onset is.

Was acute for him.

So, like, within 12 hours, he was paralyzed.

But one of the things that we're finding is that even the neurologist would be like, oh, we don't know what to do with you.

See you in a year.

Right.

And then, you know, another thing that we've talked about in your group thing is when you have a rare condition like this, you know, your person and things don't always present, like if they would present in you.

And I, perhaps.

So the advocating that you've had to do on behalf of Shawn would be like, yes, this presents like this in me, but Sean has this.

And so I know that you've had to do a whole lot of work in that area.

And I know it's probably difficult.

Oh, absolutely.

And friends, to understand, you know, what all that means.

So.

Yeah, I mean, you, you know, if someone gets a diagnosis of, let's say, breast cancer or lung cancer, we as a community and as a medical community kind of understand, like, they have sort of a concept of like, what does that mean?

And that there's a protocol.

Okay, here's what it means and here's the stage.

And here, therefore, is what we're going to do.

And that really doesn't exist in the FA community because there are so few.

There are.

There is now a protocol for the transplant, but not for the cancers.

And so often doctors were looking at us and saying, what do you want to do?

And we're like, what?

We're not the ones with the medical.

Degree, but the people with medical degree.

Well, it's not funny, but it's funny.

Right, exactly.

And in some ways, it's like, well, I guess thanks for asking your input, but also, that's a lot of pressure to put on us when we don't.

Yeah, we don't have the degree, but they have the degree and they don't know either.

Right.

So, yeah, that's absolutely been an extra layer of advocacy.

And then also, like you mentioned, our personal community, just not understanding.

You know, they don't have any context for this.

I remember early on, my daughter's therapist saying, oh, it's just anemia.

Great.

You know, like, she heard enzyme pills.

Right?

Exactly.

She's like, oh, I'm so relieved.

That's the diagnosis.

And we're like, no, no, no, no.

Nope, nope.

That's not what's going on.

So, yeah, the rare component adds an extra layer of complexity when you're a caregiver.

So let's talk about that for a little bit about how people know how to react when you say, well, Steve has lung cancer, or, you know, Ben, not Ben, Sean has anemia.

I mean, they know how to process that, and they know that the treatments for that.

But that's a segue into our conversation today, because I listened to your podcast episode on YOLO.

Yolo live once.

And for caregivers with any caregiver, really, with not just a rare, chronic conditions, but any caregiver of their person with any condition, you only live once takes on an entirely different meaning for people.

And I think for us, Yolo has changed a lot, because I'm sure you were like this, too, Allison.

But pre.

Pre diagnosis is that we just took off.

When we wanted to take off, it was, you know, we.

Someone was playing in Kansas City.

We'd get in the car and we'd go, yeah.

You know, and everybody.

Everybody was fine, and there was nothing.

We had extra.

We had to drag along.

Steve packed his own bag.

We didn't have to worry about parking.

The toilet seat, the walker, nothing.

Catheter bags.

Yes.

Just wet.

And so one of the things Steve talk about, and I talk about in terms of Yolo is that these are the moments that we're in now, and these are the moments that we have to be okay with, as opposed to looking in the past, like, oh, yeah, we used to do this, wallow around in that, but we have to figure out new ways.

Sure.

Most of our friends have been super understanding about this.

And just to give you a little background, Allison, and how we can do YoLO now is that it's difficult for Steve to really go anywhere because he's in pain all the time.

It's just chronic all the time.

And so that isn't an issue of itself.

Getting him to the car, getting him to walk, you know, so really, the only places we go now are doctor's appointments together.

Right.

You know, we're starting to have people over to our apartment more often to have some social stuff for dinners and things.

So how do we.

How.

How do we talk to our friends and our family about.

It's not easy for us just to get in the car.

Sure.

And go drive 5 hours to see you.

Right?

Yeah.

That's just not a thing for us anymore.

Right?

Yeah.

Yeah.

I wondered, when you said most of our people have been.

Have been understanding, I was like, that means not all of them, right?

Yeah.

Well, I think even.

It's so true.

And I think even, like, the fact that you and I are celebrating, the fact that we were able to do this zoom call today, it just, without having to cancel, just shows that not only are these things in our lives complex and full of luggage and all of those things, there's just uncertainty.

There's uncertainty constantly in the life of a caregiver.

And so you can't just schedule something and assume that it's going to happen.

Right.

I mean, I never assume that my day is going to go the way that I think it's supposed to go.

Yeah.

And so I think that that's what people need to understand is that everything I schedule or do is with an asterisk, because we just don't know what's going to happen.

And so I think that when your question was, how can we get our friends and family to understand this?

And so part of it, I think, is painting the picture for them, because let's say you do have somebody over, I would guess that your husband sort of rises to the occasion, and then he gets sort of his best self.

Mm hmm.

In that hour that those people are there so that they leave, and the picture they have in their head of him is like, well, he's great.

Right.

What they don't see is, like, the energy it took for him to do that, the crash that might happen afterwards, all that you had to be doing and managing in the moment, the fact that it was in your house and you didn't leave, and all of those things.

Right.

So they don't, they don't hear that part.

They don't.

They don't.

They don't see that part.

And so I think our job and what I'm trying to do also with my nonprofit is to really paint the picture for the world of, like, what is it really like to be a caregiver?

So even when you just said, if we went on a trip, we would need to bring a toilet seat, a catheter, a walker.

Right.

So just to explain to them, this is what it used to look like, this is what it looks like now.

It's not that we're the being boring.

It's not that we're, like, just sheltering ourselves.

It is that the reality of traveling looks like this.

Yeah.

Logistically, it looks like this for our nervous system.

I won't speak for you for myself, but, like, if we have, like, he and I are supposed to go to this conference at the end of September for his disease, and I'm leading support groups and he's on a panel and all of that.

It's in North Carolina and we live in Minnesota.

And I have been panicking about it for months.

Yeah.

Because it's like, what can we, oh, what is that going to be like?

You know, and so the joy even of, you know, I've seen quotes about the joy of the trip or the whatever, half the fun is, like, looking forward to it.

And I have found as a caregiver, that that is not true.

Yeah.

The looking forward to it is instead the panicking about it, about all the things that could go wrong because they have happened in the past.

It's not me being like a catastrophizer, it's me reflecting on the data that has been my life.

Yeah.

Of how often this has happened.

That's happened.

We've had to cancel.

We haven't, you know, we've been on a trip, but then this is, you know, we end up in the urgent care.

Like, it's not just me worrying, it's.

It's me living from experience.

And so I think that when we're trying to get our friends and family to understand that it's painting that picture for them of like, let me tell you what it's like to pack for a trip like this.

Let me tell you what it's like to have to research where the hospitals are near this location.

Yeah.

So that if we need to go there, we know where that is.

Yeah.

You know, so that they don't, they're not just saying, oh, Shaili's just saying, oh, there's no fun anymore.

It's like, I want to be fun.

I am fun, dammit.

I am fun in my own special way in my house that I can't leave.

So I think that's a piece of it.

And I think even trying to paint that picture, you know, like we just, last night, we, a friend of ours, her son works for this little ice cream truck business, and they were doing a fundraiser of every ice cream cone that was sold last night at this ice cream truck would go to him.

So my husband and I were like, do we go?

It's 14 minutes away.

Yeah.

And even that, we were like.

And then we went, and it was lovely.

But we came home, and he was just, like, wobbly and exhausted.

And so the friend that saw us there was like, wow, look at them.

They were out in the world.

But people don't see the after effects.

And so that's what, you know, I'm sure what you're trying to do here in your work.

What I'm doing in my work is really trying to let people in on the reality of what it really looks like before, during, and after.

You know, I never really thought about this, what you just said, but, yeah, people.

When Steve.

When people come over and Steve's not sick, so, like, if we, like, we've.

We've gone on trips, like, an hour away, an hour and a half away, or, like, we need to get out of the apartment together, and all we do is we get an Airbnb on the lake, and we just park it at the lake.

You know, we just stay at the lake in the Airbnb.

But every time we've come back, he's been.

He's gotten sick.

You know, he's just, like, from.

Probably from the trip itself.

Just stress on his body.

A different place, a new place.

How do we set up, Catherine care?

How do we.

You know, just all these things that he's super nervous about and I'm super nervous about.

So every time he comes home, he gets sick, and we don't.

People don't really see that because they see pictures of us.

Oh, we're on the front porch.

We're in the back listening to the birds.

Oh, look at the rain.

We take selfies, and we're all smiling and stuff, so people think, well, Steve's fine.

You can go on a trip.

Yes.

But then we don't really talk about.

Which is something I need to do more about how.

Yeah, we went on a trip, but then it took us two weeks to recover.

Yeah.

Because.

And I don't know if Sean is like this or not, but any little thing that, like, if Steve even gets a cold.

Yeah.

Like, you and I would normally get a cold.

We feel bad for a day or two.

We take some aspirin.

We'd be fine.

It's like a three week ordeal for Steve, you know?

So that is something that I'm glad you brought up, because I really need to highlight that more, because when people.

You know, now, if he was feeling bad, like we're having someone over on Saturday, if he was feeling bad.

I would just text, say, hey, list, Steve's sick.

Sure, sure.

And they would get that.

But when he's here, like, he.

You know, he pops up on the couch.

He walks without his cane.

It's really ugly looking, but he walks without his cane.

He eats dinner with us, and he says funny things, like, listen, I have no control over my bowel.

Control is okay, but I will spontaneously fart in front of you.

I mean, he's like his normal funny self.

And then they leave, and sometimes he's down, and sometimes he's okay.

But that energy that they expand, Allison, is such a good point that it's for us.

We could go two or three days expending that energy and be fine.

They can only go, like, two or 3 hours to do that.

Yes.

So we're taking a trip to Wichita in September for my daughter's 40th birthday, which is four and a half hours from here.

So what you were saying about.

I've already got this now I know where the hospital is.

Yeah.

You know?

Yeah.

Um.

So I've already got the scenarios in.

In my head.

Yes.

And we always have to look for.

We get Airbnbs because there's just more room and for him to maneuver, and he's.

He's got to sleep a certain way.

Like, he can't sleep laying flat on the bed, you know, just things like that.

So you always also have to look for specific places.

Like, is it two bedroom?

Does it have a couch that he can put his feet in?

Does it.

You know, does it have a bathroom that's big enough to put the toilet seat in?

Yes.

You get the walker through the doorste.

You know, just all these things that I don't think people know, and we don't highlight enough, so I really.

I really need to do that more.

Even one time I did a post about, like, my husband's, like, one of his childhood best friends was in town, so we went to his brother's house, and we all had this dinner, and so I took a picture of them, like, ta.

Smiling, like the typical, like, selfie.

Right?

And then we came home, and then he just crashed.

And I took a picture of that as well to show side by side.

This is what people see that we were at dinner, and, like, wow.

And he wouldn't have given that up for the world, but what that means is that an hour later, he looks like this.

Yeah.

Right.

And this is the impact that that had on him.

Yeah.

And so I think even.

And I think when you talk about colds, and things like that.

Same that we have to be, like, so careful about germs.

And even like, you're like, oh, I might get a little cold, but even I am like, I don't have the time and energy to get a cold.

Oh, that's very true.

Already true.

So, you know, where people are like, it's fine, maybe you just get a cold.

No, no, no.

When your life is already this heightened, like, just adding a cold is a big deal for either of us, you know?

Yeah, well, and also I found that I've been sick more just because I, you know, I think just the anxiety and just the immune level, your immunity, I think, gets compromised to some extent when you're always in this heightened state of alertness.

And I don't know if it was on your podcast or another podcast I heard, but, you know, humans are supposed to have this level of, you know, this level of anxiety or stress when things happen, but we're not supposed to stay up there.

Exactly.

You know, we're supposed to, like, come back down normal, calm selves.

I think for Steven, I, it's, it's calmed down quite a bit.

But, you know, just one of the things that's popped in my head.

We usually go to Gulf shores every year during December, and it's a twelve hour drive from here.

We did in two days.

You know, we didn't go last year because he'd just gotten out of inpatient therapy.

And I don't know if we're going to go this year.

But the first thing that popped in my head was, okay, I need to get a referral to a urologist in case something happens with his catheter or he gets bladder spasms or he gets a UTI.

I'm just like, what has my life become?

Yes.

What I've got to think about.

Where's the urologist?

Down in Gulf Shores in case we have an emergency.

Right.

Because you know you will 12 hours.

From home, you know?

I know, I know.

And I think the thing, I think it's such a good moment to stop and say, like, what is my life, like, what has happened?

Yeah.

You know, would five years ago, I can't remember how long ago his diagnosis was, but would five years ago, Shelly, even know half of the words that you know now and be thinking about?

His diagnosis is fairly new.

He was just diagnosed and at the.

On September, well, his symptoms, um, came on the 17 September.

Took a couple of days to diagnose because they thought he had Guillain Barre at first.

Okay.

And then it turned out to be transverse myelitis.

So just a year.

It's not even been a year.

Yeah.

Yeah.

So think about two year ago, Shelly would see this and be like, wait, what?

You need a who?

A bladder spasm?

What's even a bladder span?

We never heard of transverse myelitis.

Of course you hadn't.

Right, of course.

So I think that brings us back to, like, the Yolo thing that some people think, well, just go and just think about.

And you have to, like, I feel like, for me, like, every interaction or every experience, you have to weigh, like, okay, was that trip to the ice cream thing, was the beauty and the community and the moment of it, does that outweigh the impact?

Right.

And so does you going on this trip.

If that turns into, like, he gets sick and he.

Is it worth it?

Like, if you start to see this pattern of every time we go on a trip, he gets sick, like, at some point, you're going to have to say, is the trip worth it?

Yeah.

And sometimes it might be.

Right?

Sometimes the good outweighs the bad, and you're just going to take them both together.

Right.

But, like, you know, it's.

Sometimes you might have to say, like, I don't know.

I don't know if that's sitting on the porch in the rain I, like is enough to outweigh two weeks of sickness afterwards, you know?

Yeah.

And I don't know the answer.

Like, I think it's a case by case and moment by moment, and, you know, it's different for everybody, but I think that's what the world doesn't get, that we're weighing with every decision that we make.

So do you and Sean have a conversation afterwards about weighing whether this was a benefit?

And do you use that as a barometer for other events that you.

Or things at places that you go?

I think that if it's a big fallout, then yes.

Thinking, if it's last night and it's the ice cream, and then afterwards, he's a little tired, it's sort of like, okay, we kind of expected that to happen.

But if it's like, we went somewhere and then let's say he got Covid, you know, or something like that.

Like, if it's a big Covid.

When we opened the lake and it was, like, miserable.

Miserable.

So if it's that kind of thing, like, actually, this happened.

So.

It was a year ago almost right now.

My parents took my brother and his wife and Sean and me on a cruise for my parents anniversary, and Sean was able to go.

And it was.

We all had a great time.

And then he got Covid from it, you know, so that's one where we can be like, okay.

And, you know, he recovered well.

And, you know, if it had turned into a bigger thing, like, if he had gotten long, Covid or whatever, it would have been a different decision.

That would have been a different story, right?

Definitely.

Yeah.

But it's sort of like, okay, well, was the eight day cruise still worth getting?

Covid, like, I think he would, in the end, probably say yes.

Right.

But.

So I think we have to just weigh that every time.

So same thing with this conference coming up.

It's like, oh, is this going to be worth it?

You know?

And we.

We don't know, but we got the tickets, so we're going.

But you'll know.

But already we're.

Exactly.

And already we're thinking, like, oh, do we keep.

Do we keep signing up for this year after year?

If it also causes this much angst leading up to it of, like, are we really going to make it?

You know?

Yeah.

Then is that worth it or not?

Yeah.

So what's been your experience with.

Since we're fairly new at this.

Yeah.

What has been your experience with.

I think sometimes Steve and I, since we're so new at this, we become very fearful about leaving.

Like, unless it's go to a doctor, like, he's going to go back to PT twice a week and, you know, neurologist.

Neurologist.

And whatever appointments we have, those things are fine.

Like, we'll get up and we'll go because those are important.

Right.

Then I think for both of us and for Steve even more so, we've become more fearful of going out just because we would love to yell, we would love to take off Casey again.

But then there's this underlying fear of, well, last time we went somewhere, it took you.

And also, as caregivers, I wasn't always like this, but when Steve is down, I'm down.

When Steve's having a good day, I'm having a good day.

Sure, sure.

You know, it's like my.

I sort of ebb and flow with him.

So for both of us, when we go do something, it becomes a very, like, fearful thing of, okay, am I gonna get sick then?

How am I gonna be?

Yes.

When Steve gets sick, I'm like, oh, my gosh.

These conversations, you know.

Yes.

That we're having, it's crazy.

It is.

And I'm glad you're taking these couple of moments every once in a while to stop and just be like, what?

This is what we talk about.

Because I think that sometimes we're just in it, and we don't stop to be like, wow, our lives have changed.

You know, I think that's really important to stop and do.

Yeah, I mean, I think you gotta.

It's all trial and error.

Because I think what ends up happening is, like last night, you know, with this ice cream thing, there were moments where I was like.

And then afterwards, I was like, that was really lovely.

Yeah, it was really lovely.

And I'm really glad that we did that.

We sat on this, like, park swing, eating our ice cream on a summer night, watching kids in a park, and I was like, this is lovely, you know?

And I.

And so I think that it's almost like this little t chart.

Right, with little columns, and so I can be like, okay, we did that.

And it was actually really lovely, and then it boosted us.

And so, like, one for that column.

Because I think if we're just always like, well, that didn't go well.

That didn't go well.

That didn't go well.

You know, taking those moments to test out different opportunities.

So even sometimes where we went some, I don't know, it was like, some store or something the other day, and he was sort of like, that was great.

You know, he was just excited that it was like we went out into the world and that we just kind of had fun together, like at the store.

And I was like, yeah, yeah, okay, we should do some more of that.

And so I think it's.

It's trying and to realize that, like, maybe the excitement for us now is this little ice cream in a park.

Whereas before, it was like flying across the country.

Yeah.

You know?

And so sort of taking the wins where you can get them, you know, and not having it be all or nothing.

We can't go on a trip at all, therefore we're going to just stay in our house.

Well, okay.

It's not just.

That's not the only thing you could do.

Yeah.

My therapist is talking to me about how we need to do things other than doctor's appointments together.

Yeah.

Even if it's just going to sonic and grabbing a drink and then heading to the park, you know, because it's.

It's.

Our moments are different.

So the moments were, we have to know that and figure out ways that.

Because your dynamics, if you're the caregiver of a spouse or in my situation, a partner.

Twelve years, it's.

You go from being a spouse slash partner to caregiver.

Yeah.

And you lose that whole.

Or I did lose that whole partner label.

Yes.

Role.

Whatever you want to call it.

Yeah.

That I had.

Yeah.

Yeah.

And so just trying to find ways to bring some sort of intimacy back in.

Like Frank at Sonic.

Yes.

Or ice cream at the park.

Yes.

As opposed to just always going to the urologist together.

Exactly.

I mean, I laugh about it, but it's just like, oh, we got to date a theologist once a month.

Right, right, totally.

And, I mean, we could.

We could have a six hour episode just on what you just said.

Right.

I mean, the.

The complicated nature of when a spouse becomes a caregiver.

And how do you lose.

You know, you might lose that part of your relationship.

Right.

And so I think you're.

You're so right that some of those things, whether it's.

I know that my podcast co host, Justin, what they would say sometimes is if she.

If his wife had energy, they would try to, like, do something like the sonic thing on the way home from the doctor.

Oh, that's good.

Yeah.

Turn it into a date.

Right.

Like, oh, we're just out in the world.

Anyway, let's stop.

They would, like, go to their favorite restaurant, get takeout, and just sit in the car and eat it because it was too much to be in the restaurant.

So there's that kind of thing, but then there's also just the, like, it doesn't all have to revolve around the doctor's appointments.

It can just be, like, a random Tuesday night and be like, hey, let's go to sonic, get a freezy or whatever those things are, you know, and go in the park and, like, do something again, that's nothing.

Not just related to this disease where we can maybe have a conversation that doesn't have to do with medication and, you know.

Yeah, yeah, that's a good idea.

But again, it's like those little.

Those little things, because I think for anybody, probably, it's those little moments more so than the, like, giant trips.

It's just that, especially in the social media age, we're seeing everybody on the cruise ships and on the beach and on the whatever, and it can feel like we're missing out on that, you know?

Yeah.

And I agree that we need to really look at these smaller moments as well, but, you know, when our life was semi big moments, you know?

Yeah.

So we rarely, like, ever went to sonic just for a shake, you know?

Right.

So.

But those are just new things that we're going to have to move into, and I think we have a lot of really understanding friends.

I think that we do.

We do have friends that say, well, have you done this, or have you tried this or what?

What do you think about this?

And I had a guest on my podcast who talked about how I kind of get irritated at those things.

I know they mean well, but we're like, well, our neurologist doesn't even know what to do with it.

Right.

You know, I don't know that a magazine article is going to.

You know, but she made the point of, that's how they feel.

They can communicate with you.

Sure.

You know, and maybe there might be something that you get out of this article, but they.

That is what they're using, because they don't really like.

Like, I didn't even know that what Sean had existed until I started listening to your podcast.

Of course.

Holy cow.

Right?

What is that?

Right?

I.

My gosh.

Yeah.

So, you know, I don't know.

I don't know everything, but I do have a lot of well meaning friends, I think.

But back to what we talked about earlier, I don't.

They do see Steve a lot of times.

Most of them do.

We've had a couple of friends that don't see him at his best.

Sure.

They.

They're fully aware of what's going on, but you're right.

We have people over, and he's just like.

He's just Steve.

Yeah.

So that's something I think is very important to.

To discuss with them.

Yeah.

Yeah.

For sure.

And I wonder even.

And this is.

I'm suggesting this for myself as well, but even on those, like, sonic dates, like, if you just say to a friend, hey, in ten minutes, we're gonna go to the sonic on State street, and we're gonna drink some shakes in the park.

You wanna join us?

Yeah.

You know what I mean?

Because I think part of the YOlo is that we just need to sometimes just, like, grab a moment where we're like, oh, you actually feel okay?

I feel okay.

And it's not raining.

Okay.

Okay.

Let's just go do something, you know, because the planning.

Yeah, we don't do that.

We, like, plan everything.

So that's.

That's a great idea, just to be like, we're both feeling really good.

Let's put some clothes on and.

Yeah, yeah.

Pants on, Steve.

And we're gonna go to soccer.

And again, so.

So, so that you're not, like, your social interactions aren't limited to your house to say to your friends, we're going to sonic.

You want to join us?

Yeah.

You know, and then just turn it into that instead of this, like, oh, do you want to go do this big, long thing?

Just like, have the little moment and have them join you in the little moments?

Yeah.

Yeah.

Well, you've been doing this for so long that that's probably becoming second nature to you, I would think.

Which part?

The, hey, let's, let's, let's put our.

Clothes on and go to somewhere or something.

You know, that's something I have to, like, think about because I'm just so still down.

And we have, you're all just a point of this.

We have that.

Yeah.

I don't think I'm great at it because I think, and I think Covid didn't help.

Right, Covid?

Absolutely.

Covid plus caregiving.

Absolutely made me a homebody.

Yeah.

And so I'm just like, it's safer and cozier here, and it's just easier.

And so I have to remind myself with moments like last night to be like, this was actually pretty lovely.

We should do little things like this more often because also I see a huge boost in his morale when we do those kind of things.

Definitely that he's like, that was really fun, you know?

And so, so, no, I, even though I've been doing this a long time, that's still something I have to remind myself to do because it's just safer to stay home.

One of the things I've caught myself doing, and I've heard it in the caregiver circles, is those kind of things.

It's just one more thing I have to do.

Yes.

And Steve even, like, will comment about the pt that where he's going to twice a week.

Well, that's just another thing you have to do.

But I like to reframe that, to say yes.

Driving you to pt twice a week.

Luckily, it's just two minutes away.

There's one more thing I got to do.

But I would never roll my eyes and be like, oh, my gosh, that's one more thing I got to do.

Because your recovery is important and Pt is important to your recovery.

Yeah.

So for me to say, oh, if I go to a yoga class or I go out to drinks with the girls or whatever, that's just one more thing I gotta do.

I doing a real disservice to myself.

Yeah.

Because doing those things are also.

And I can leave Steve.

I can leave him.

I can't leave him overnight, but I can leave him for three or 4 hours.

He'll be fine as long as I.

Have his lunch on the top shelf of the fridge.

He's good.

That's another thing you have to think about.

Like, there's no yolo with lunch.

It's like, you want.

You want something to eat, go fix it yourself.

Right.

I have to be, like, chop up vegetables and make some things.

But anyway, back to what I was saying was that we really need to stop saying when we're doing things for ourselves, or even if, like, Steve and I were going to sonic.

Yeah.

Because that's important for our relationship.

Yes.

It's just not one more thing we have to do.

Yes.

In that tone of voice.

Totally.

Totally.

I use my google calendar, as I think many people do, and I color code things, and that has helped me.

So it's like, blue is work, and purple is for our daughter, and dark blue is his appointments.

Yeah.

But I have this green color that is sort of a.

You know, I'm not a fan of, like, self care, but it's sort of my, like, self care, whatever color.

Um, and so when I have things, like a therapy appointment or for a while, we had a cleaning service, I put that as green, because I was like, absolutely.

That's self care.

Yeah.

When that person is coming.

Um, and so things like that.

That are.

I have, like, a monthly date with my best friend from college.

That's green.

You know?

And so I try to put those things, because I can look at my calendar and be like, you know, like, things on it that can stress me out.

But if I look at it and I'm trying to train my eyes to be like, oh, but look at all that green.

That's another great tip.

I'm gonna do good.

Great.

Yeah.

Yeah.

Because even, like, I was trying to think for the ice cream thing last night, I was like, do I put this on the calendar so I don't forget?

But then it's gonna stress me out that there's another thing on the calendar.

But then I made a green, and I was like, oh, a fun green thing is on there.

This is a great thing.

I need to do that for your group.

So I don't forget, like I did Monday.

But part of my problem is, Allison, is I don't know what day of the week it is.

Right?

I know.

So, like, I asked Steve, I'm like, is this Monday?

It's like, no, it's Tuesday.

Oh, darn it.

I missed it.

But so that.

That's.

That's a great example.

Like, coming to a support group is a green thing.

Right.

You know, as far as my color coding goes, is that the thing that fills you.

And so it's not just another thing on the calendar.

It's a thing that is super beneficial to you.

Yeah.

Your.

Your group really has been.

So in the time we have remaining, I would love for you to talk about your not for profit, the negative space, and all the great things that you're doing with that and why you decided to start that.

And I know the story about negative space.

Yeah.

But if you would tell that as well, why, you would love to.

That name.

Yeah.

Yeah.

Thank you.

So the concept of negative space, it's actually an artistic concept, and so it's all the things that are in the background of a picture.

So if you picture, like, sort of the basic art of, like, there's a house and a tree and a sky and whatever, that your.

Your eyes are focused on the house, and you don't really pay attention to everything that's behind it.

But if that scene changed, the whole picture would change.

Yeah.

And so the same is true from one of my experience about caregivers is that everyone's focused on the patient and nobody's paying attention to what's in the negative space, this area around it, which is us caregivers.

And then if we went away, the whole picture would change.

And so that's where I came up with a concept of negative space.

And so that's the name of our nonprofit.

I started it because I was actually at a support group for spouses and partners of people with Vanco anemia, which is what Sean has.

So this really rare niche group of people at one of these meetings, like, I'm going to in a couple months and, oh, weeks, actually.

Don't think about that now.

Don't think about it.

Stay in the moment, Alison.

It'll be fine.

It'll be fine.

But what a good example of how this works, right?

Anyway, so I was at a lunch support group with these folks, and the social worker was like, how are you all doing?

And everybody was like, I'm so blessed, and I'm so grateful, and I'm just.

I love being my person's caregiver.

And I was like, what is happening here?

I have never said that.

Like, I was like, this is a.

Year of caregiving ever, right?

I was like, this is the space where we're supposed to be able to, like, speak our truth.

Yeah.

And so it made me real.

Like, it really dig into, like, why is it that so often caregivers feel like they have to bright side themselves?

Why do they have to say, you know, even if they talk about hard things.

Why do they always have to end with a pretty little bow of like, but I wouldn't change a thing, or, oh, I'm so grateful.

And so I really started to dig into that and realized that caregivers often feel like they can't have.

They feel like they can't complain because they're not the one who's sick.

Yeah.

Or maybe they've tried to speak their truth at some point and someone has shut them down or brightsided them because it made them uncomfortable.

Yeah.

And so I was like, I'm just going to start talking about it.

So I started writing first and just writing things honestly about what it's like to be a caregiver.

And people, you know, came out and were like, you have my words.

Like, I didn't know we were allowed to say this stuff.

This is amazing.

And then from that moment on, I was like, this is just what I need to be doing.

Like, there is a need here.

So I had been the director of an AmeriCorps program.

I was in the education space, and I just was like, I'm going to use those skills to do this instead.

So three years ago, I took this big leap.

I left that big job and started the nonprofit.

A beautiful thing is that Sean was in the nonprofit space before his diagnosis, and so it's something that we're able to do together, and he's able to do, you know, sort of the paperwork, behind the scenes things, and then I'm able to do all the content.

So our mission is to change the way caregivers are seen and supported.

So we do that in two big ways.

One is direct support.

So I do one on one coaching.

I do the in Sickness podcast that we referred to a couple of times.

So that's me.

And my fellow co host is a male caregiver for his spouse.

And so that's a really important perspective as well, to have a guy talking about it.

And then, as we've talked about, we have support groups that are based on the podcast topic.

So, like, the last topic was on grief, and then that way people know, because some people are like, I absolutely do not want to go to a group about that.

And so they can skip, or some people are like, I absolutely do want to go there.

And so it almost ends up being like a book club in some ways that people have almost always listened to the podcast, and then we can come together and talk about it.

Those are all virtual.

Everything that we do is free because we're a nonprofit.

So the coaching is on a sliding scale that goes down to zero.

Podcasts or the podcast is free, the support groups are free, all of that.

We also have caregiver gift boxes, and the whole theme of those is, I am part of the story that you can get for yourself or get for somebody in your life.

Those are also available at no cost, if cost is an issue for you.

And then I do stuff on social media.

So both talking about my daily life as a caregiver, but also trying to educate those who are out there who could be supporting them.

So that's kind of the second arm of what we do, is, I don't want caregivers to just feel great when they're hanging out with me.

I want them.

I want to change the systems.

And so doing things like, I just got to speak to a group of physical therapy students at a university who are about to go out into the field to really get them to think about caregivers.

I've talked to medical professionals, church bodies, just really trying to get out there and educate people about what it's like to be a caregiver so that they can be more supportive to the caregivers in their lives.

Yeah.

Yeah.

Well, it's a great.

I love.

I love the group, and I love your podcast.

And I also have been on the negative space website, so seeing a lot that you do.

So thank you for doing that, for.

It's just absolutely a great, great mission that you have.

So, Allison, before we sign off, do you have any parting words of encouragement, wisdom, inspiration for my listeners?

Oh, I think one day at a time.

Right.

And so I think from what we talked about today, you know, it's not about the making the big plan down the road.

It's maybe about the finding the little moment and realizing that, like, is there a little thing that you can do today that brings you a little bit of joy that you and your person can do together, that you can find that connection, that it doesn't have to be this big, big planned something, but the little moments can really be impactful as well.

And then I think the other piece is as comfortable as anybody is, and not everybody's comfortable sharing their caregiving story, but to help paint the picture for the people in your life about the reality of, yes, you saw my person looking shiny and energetic, and here's what it took to get us there and what it took afterwards, just so that more people can start to be empathetic and understanding and then supportive of all of us as caregivers.

Well, those are wonderful words to end our conversation on.

Thank you so much, Allison.

Yeah.

I really appreciate it.

Absolutely.

Yeah.

Thank you.