In this episode of Rewired Minds, Bri Salsman speaks with Beth, a caregiver for her son diagnosed with an astrocytoma. They discuss the emotional journey of caregiving, the importance of living in the moment, and the challenges of navigating relationships during a health crisis. Beth shares her experiences of coping with uncertainty, finding support in her community, and the personal growth that has come from this journey. The conversation emphasizes resilience, hope, and the need for caregivers to take care of their own emotional well-being while supporting their loved ones.

• Life isn't over just because you got this diagnosis.

• Focus on the present because you don't know what tomorrow brings.

• If he can be happy in the middle of this, I need to be happy for him.

• You have to treat him like an adult.

• It's made me realize that I can compartmentalize other things.

• You have to remind yourself that you're two separate people.

• You have to be there for them when they need you.

 

Resources

Check out a list of the most common medical terms relating to the brain tumor experience: rewired-minds.com/terms

Connect with brain tumor organizations here: https://www.rewired-minds.com/braintumorresources

 

Connect with Rewired Minds

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Interested in being a guest on a future episode? Visit rewired-minds.com/guest for more information and to submit your request.

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Disclaimer

The stories shared here are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation. Most importantly, take care of yourself as you listen and process.

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Transcript

Bri (00:00)

The stories shared here are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation.

 

Guests sometimes use medical terminology. So I've partnered with Northwestern Medicine Malnati Brain Tumor Institute to provide definitions of common terms. The full list is in the show notes. And here are a few that come up in this episode.

 

Bri (00:28)

An astrocytoma is a tumor that grows from star-shaped glial cells called astrocytes. These tumors can be slow growing or fast growing and can occur anywhere in the brain or spinal cord.

 

Tumor grades describe how abnormal the tumor cells look under a microscope and how quickly the tumor is likely to grow. Lower grades grow more slowly while higher grades grow more quickly. In this particular episode, grade one is mentioned. In a grade one tumor, the tumor cells look almost normal under a microscope and grow very slowly. These tumors are the least aggressive and often have the best treatment outcomes.

 

Methylation testing is a lab test that looks for chemical changes on the DNA of tumor cells. These changes can help doctors predict how aggressive a tumor might be and which treatments are most likely to work.

 

Bri (01:26)

Most importantly, take care of yourself as you listen and process.

 

Bri (01:36)

I'm Bri Salsman, a brain tumor survivor and life coach, and you're listening to Rewired Minds, a podcast where we share brain tumor stories that change us. Today's guest is someone who'd like to remain semi anonymous. So we'll just be using her first name, Beth. Beth is a caregiver for her 24 year old son who was diagnosed with an astrocytoma in 2024. Hi Beth, welcome to Rewired Minds. Thanks for being here.

 

Beth Muhlhauser (02:03)

Hi Bri, thanks for having me.

 

Bri (02:06)

Of course, I just gave a small snapshot of your connection with the brain tumor community. And I'm wondering what else do you think is really important for listeners to know right up front before we dive deep?

 

Beth Muhlhauser (02:17)

I guess, especially for people who are in the early stages or just got diagnosed is, life can be good afterwards. And like we've, we've really become closer as a family after my son's diagnosis.

 

Like focus more on the moment and deal with things on a day-to-day basis as opposed to looking into the future all the time. So I guess what I would say is most important is it's, life isn't over just because you got this diagnosis or your loved one got this diagnosis. There's still hope and you always have to keep hope alive and on the forefront.

 

Bri (02:50)

It almost sounds to like another aspect that I'm hearing is remaining present. And certainly there's a lot of future oriented questions and what's going to come in the future. But there's also this aspect of being with the person where they are as how would you adjust that or how would you describe that part of it?

 

Beth Muhlhauser (03:09)

No, I think that's just right. I'm someone who, before this, I always look to the future. I don't know why. I could be in the middle of a wonderful vacation and I'm thinking about next year's vacation, right? Or with my family for the holidays, I'm already fast-forwarding to the next holiday. But this really, you know, you have to focus on the present because you don't know what tomorrow is going to bring.

 

And one example, I guess, that really hopefully kind of drives at home is when we were going through the middle of this, like after my son had a surgery and we found out that they hadn't, they only got 18% of it, which was kind of a shock because his neurosurgeon originally said, this is going to be a piece of cake. I do a hundred of these a week and it's very well circumscribed and I should be able to get the whole thing out. And he'll, you know, he probably won't even need monitoring after a couple of years. And then to find out that, you know, it was still in there and it was going to probably still affect him and then he did need radiation.

 

But in the middle of all this, I remember, talking to my son and like saying, I'm so sorry you're going through this. And he said, mom, he's like, no, I'm actually, I'm so happy right now. Like, I'm just really happy because, you know, like he didn't really have deficits after the surgery, thankfully, other than he still has like some double vision issues in his periphery and dizziness. But you know, that's why this neurosurgeon stopped because he said he could have,

 

Bri (04:14)

Hmm.

 

Beth Muhlhauser (04:27)

lost his sight or lost his ability to walk if he continued trying to get the rest of the tumor out. So my son actually really made me realize like, if he can be happy in the middle of all this with what he's going through and having to adjust his life a bit, I need to be happy for him. And so that was one of the big eye-opening moments where he said, no, I'm so happy right now, which I just did not expect to hear that at all.

 

Bri (04:45)

Mm.

 

Yeah, that's amazing. What did your relationship with your son look like before all of this? How would you describe it?

 

Beth Muhlhauser (05:00)

We were always pretty close. He is a very private person. That's one reason why I'd like to stay anonymous on here. he's not someone who talks about his feelings a lot, I remember when he was like in high school and he'd, I might be in middle of something important and he'd come downstairs and say, Hey, you want to watch a movie? And I drop what I was doing because, I'm getting to spend time with him. He's not just up in his room. And he's still somewhat like that, but he does like talk more about things.

 

Bri (05:19)

Hahaha

 

Beth Muhlhauser (05:25)

I took him to radiation every day and all of his follow-up appointments, his dad and I, if his dad's able to make it, we go with him and sit in and I ask, sometimes I ask too many questions, he'll start like patting my leg, like, mom calm down. But we, you know, we've always been, had a good relationship and I think it's just, this has made it stronger.

 

For my birthday this year, he wrote me a letter and it was very personal and just told me how much he appreciated everything, which, you know, I knew he did, but he never really put it in so many words. And there's times where like, I know that he's frustrated, like for instance, he would be very fatigued or, or like he likes to rock climb. And when he was first trying to get back to that, he was having a lot of difficulty and he can't really run anymore. Like he used to like to run because it makes his head hurt. Or he was going through a period where he was having headaches a lot. And so I would say, why don't you try this? Or did you take some time? And he was like, mom, just leave me alone. Because I would sort of harass him. So I'm trying to be more mindful of he is an adult. He knows what he needs to do. But that part's hard sometimes to try not to mother him, but not smother him, I guess I'll say.

 

Bri (06:27)

Yeah, yeah, absolutely, absolutely. And prior to all of this coming up, what were some of your all's favorite things to do together?

 

Beth Muhlhauser (06:44)

We always try to take like vacations where there's a lot of hiking and like nature. We go to Maine a lot or we try to do those types of active vacations. And when he was younger, his dad and I do distance racing, so we he would come with us and do a lot of that. He had kind of stopped doing that anyway, as he became an adult. But yeah, we would do a lot of vacations together and we'd go on hikes. And he was trying to get me into rock climbing a bit, which I try. I'm just not very good at it. But yeah, we love watching movies together. And, you know, we get like take out and hang out. Before we knew what was going on, talk a lot about not really personal things too much, but every once in while though, he'll decide to open up and he'll seek advice. And that really, I don't think has changed as much.

 

Bri (07:55)

Mm-hmm. So before diagnosis, it sounds like you all were very close and had a very active and maybe not quite as emotionally connected, but you had hobbies that you did together and you spent time together and quality time, it sounds like.

 

And then you get the news. How did it come to you? What was your experience in finding out?

 

Beth Muhlhauser (08:20)

He got pulled over one night. The cop thought he would have been, he said, how much have you had to drink? He's like, haven't had anything to drink. So that's when he started realizing like he had something wrong.

 

And so I remember, still remember he had an MRI earlier that day and I remember being in the kitchen, so I must have been making dinner or finishing dinner. And he was upstairs and he said, we have to go to the emergency room. And I remember walking up the stairs partway and saying, what do mean? He's like, ‘the doctor just called, they got the MRI results back and I have a mass on my brain and I need to go to the emergency room right away.’

 

And I was just like, ‘what?’ I guess like primary care physicians, that's not where they automatically go when like a younger person has vision issues.

 

His girlfriend was on her way home from work and we waited for her before we left. And I remember calling my husband because he's a coach and he was at practice. So he was going to meet us at the hospital. I remember my son insisted on driving my car because I remember he said, I mean, this may be the last time I ever get to drive. And I just, that was like a gut punch.

 

And so, so then we get there. They took us right back. Like there were people, it was crowded. There were people with like real like emergency issues and they took us right back, got him in a bed. I mean, it was like crazy. It's like my husband's like, yeah, that's how you know it's serious.

 

And so, so then, you know, we never did see the actual neurosurgeon at that hospital, but there was a neurosurgical physician's assistant who was in touch with the neurosurgeon, I guess. But they didn't know what to do with it. They just remember saying, he has a tumor very deep in his brain. We don't know how to treat it here. The one that deals with brain and neurological issues is in Pittsburgh. And they talked about taking in the ambulance to Pittsburgh, which would have been like a four hour drive.

 

We were like, what? It was just…

 

Then they didn't even know what was wrong with him yet. They at one point they were saying it could be multiple sclerosis because the shading on his brain, I guess, kind of looked maybe like it could be from that. And so we just didn't know. And meanwhile, I well, can you call Hopkins?

 

Bri (10:04)

Wow.

 

Beth Muhlhauser (10:19)

They put in the call and we basically spent a day and a half in the emergency room just waiting to hear back because if Hopkins didn't call back, then we're gonna have to like, you put them in the ambulance and travel all the way across the state to Pittsburgh.

 

Well now I know what people mean when they say it's an out of body experience or you feel like you're in a dream. Like it just, I just kept thinking this, this can't be real. Like I have to wake up. Like that's a real sensation. It's not just cliche. Like it really, that's how I felt. I was thinking how can we, this can't be happening.

 

Bri (10:46)

Yeah.

 

Yeah. Yeah. your son is getting scans and getting information and decisions need to be made. And, you know, you've got this out of body experience, like what's going through your mind?

 

Beth Muhlhauser (11:00)

I just remember I kept praying, I kept saying like, please, please, you know, because he's our only child. We are so close to him. So I just kept thinking like, please don't take him away from me. When he was born, I contracted like stereopsis towards the end of my pregnancy. So he was very sick when he was born. And thankfully the cocktail of antibiotics they were giving him happened to treat stereopsis. But I just, ever since then, I thought, okay, well we should never have to go through something like that again. I felt kind of like, like he was like Bruce Willis in Unbreakable, right? Like, you know, you almost die, so he should never, he should never get sick. You know, and so I just remember thinking like, how can we be going through this again after almost losing him at birth? And so I remembered like being very angry and…

 

Bri (11:28)

Mm-hmm.

 

Hmm.

 

Beth Muhlhauser (11:42)

And just, but like really just terror, I guess is the main feeling. But this was something I had no control over other than we…

 

Actually, we didn't even have control over where he was going to get treated because like I said, if Hopkins didn't have availability to see him, then we're going to have to go to this other place. But again it would have been much more like having to drive across the state so I kept thinking of all these things like my gosh I'm gonna have to take a know a sabbatical from work and you know and just thinking about all these like other things that because again I I control everything I

 

Bri (12:11)

Yeah.

 

Beth Muhlhauser (12:13)

you know, very organized in my work life and my personal life. And this just completely blows all that away.

 

Bri (12:19)

Yeah, yeah. And you mentioned feeling mostly terror. What was it that you were terrified of?

 

Beth Muhlhauser (12:27)

Well, I was afraid cause they kept saying it's very deep in his brain, implying that it was inoperable and that, like if they couldn't do anything, like, what does that mean? And I think, and I didn't know whether if it was a tumor, but if it was a tumor, we were talking earlier about something and mentioned, you know, glioblastoma and like, that's all I knew about was when you hear about brain tumors, that's the only tumor I'd ever heard of. I know that's not a good, you know, prognosis. And so I was terrified.

 

Then alternatively, like, well, if he did survive it, like, what kind of deficits was he going to have? You know, like, because it's on his brainstem and that controls so many, you know, important functions of your body. And so, and he's so active,

 

And so everything was going so good for him. He'd gotten a job. Then bam, it was like, like, just like my husband, I talked about this sometimes. He's like, well, Beth, life isn't fair. You know, can't, but it's just like, it just seems so especially unfair because someone like him who's a good person and, know, he was living a good life. And now this just like, how do you deal with this? And it was something that I couldn't fix for him.

 

Bri (13:16)

Hmm.

 

It's almost like I'm hearing like two sides of the terror. There's the terror of what if I lose him? And there's also another piece of if he is able to survive this, what is his life going to look like? What is our life going to look like after all of this? Am I hearing that correctly?

 

Beth Muhlhauser (13:46)

Yeah, like, I don't want this to come out wrong, but like, because I love him so much, the bigger fear for me is, like, if he if his life dramatically changes, I always tell my husband if something happened to me, like, if I was incapacitated, I, you know, I wouldn't want to live like that, because I'm very active, like, our whole family, just, you know, we're like I said, we like to go hiking, we race, we do all these things.

 

Now who knows what would, you you change your expectations, but I was just like, he's so young. Like if you were like 60 years old and suddenly, you know, like had to be confined in a wheelchair or wasn't able to like climb or do these things, maybe it would be different, but he's just getting started. So, so that fear was almost worse because, know, like, I'm like for him, you know, he's the one who would have to deal with these things. And,

 

Bri (14:24)

Hmm.

 

Beth Muhlhauser (14:30)

And then how do you comfort someone when they're not able to do all the things that they used to do?

 

Bri (14:34)

Yeah, yeah. And so, the time comes that you do get an official diagnosis. How did that land with you? How did the word astrocytoma hit you?

 

Beth Muhlhauser (14:46)

Well, the fortunate thing is he actually has a pilocytic astrocytoma. So it's the way neurosurgeon described it. He was actually kind of like blase about it, which was reassuring, but also kind of like concerning too. Cause like, was he going to take this seriously? But he said, he's always probably born with it. He's probably had it his whole life. And maybe when he went through puberty and the hormones, you know, it's, that's when it probably went on this growth spurt and started causing issues. But he said they’re, they're actually more common than you think in people and it's not the type of tumor, like it's not cancer, it's not going to spread, and it's also slow growing. He's grade one. So I don't know if I mentioned that before, but it's just where it is. like, like after his surgery, when he, follow up appointment, follow up MRI about a month and a half after surgery, I guess it was, showed a couple millimeters growth and it could have just even been, you know, like still inflammation, but they were concerned because it said even a little bit of growth in this particular area could be very dangerous.

 

Initially we were concerned because the initial biopsy or pathology they weren't sure exactly whether there are any mutations or if it really was a pilocytic astrocytoma. So they sent it out to NIH for methylation testing. So that took a few weeks. I still remember I was in the tractor supply getting my dog food and stuff. And I remember the phone rang and it was his neurosurgeon calling to let us know that in fact, it's just the typical polysidic astrocytoma, we were very relieved.

 

But again, it was another step of the journey where first you get this really like uncertain awful news about the tumor and then you see the neurosurgeon he's very reassuring and oh it's just this typical you know childhood tumor we should get be able to get it all out and then of course they don't get it all out and then he's like but it's still you know it still looks like a polycytic astrocytoma and then they say oh no the pathology came back and they're not sure so now we have to send it for advanced so it's like a never that's the thing it's like the the roller coaster and the upheaval of emotions because you think okay, I can deal with this, this is our, you know, where we're at. And then, no, something else happened. Like, you know, like we just found out about my son might have a heart contusion, and might need a pacemaker. So after he got good results back from his most recent MRI, now we have this to deal with. So it's just, that's why I really feel for people in this situation where, you know, it's just, you're never done with it, right?

 

Bri (17:02)

Yeah.

 

Right. It's almost like two steps forward, one step back. Like you finally maybe feel like, I can catch my breath. And then the other shoe drops or, you know, all those other sayings that are out there, right? Yeah. Yeah. How, how are you managing through all of this?

 

Beth Muhlhauser (17:14)

Yeah. Yeah.

 

Exactly.

 

Um, I'm doing okay. I'm one of those people, like when I can't figure out how to like work an app on my phone I lose my mind. Like, literally like, you know, like, like completely just like fall apart. But then for like in a life and death

 

Bri (17:39)

Hahaha

 

Beth Muhlhauser (17:45)

situation, I'm like, I'm your person, right? Like I do some pretty go with all that.

 

For instance, like, he doesn't eat a lot. So I think that might be why he's getting the headache. like, so, you know, have your electrolyte mixture and do that. And then he gets mad at me because I, I'm like, you know, bossing around like, you know, he says like, Mom, you know, I'm an adult, like I can, you know, take care of myself even though he doesn't. And so, so I think in that sense, the day to day is actually harder than getting the bad news.

 

But it's, it's tiring. I mean, like, I remember when he had to do radiation and it wasn't like, you we, couldn't do that type of radiation where we live. So we ended up driving down to Hopkins every day for six weeks. And it's like an hour 15, hour and a half drive depending on traffic and we would literally get there, it would take 10 minutes, I'd have time to go to the bathroom, maybe grab a cup of coffee or something, and then we'd turn around and come home. And I just remember that whole period was just like, again, like it felt like a dream, like it was just like on autopilot every day.

 

I'm sure most caregivers, especially with an adult, you you choose to be a caregiver to some extent, right? So I enjoy taking care of him and trying to make him as comfortable and happy as possible. And I know he appreciates it. So it's just, what being a parent's about, right? I mean, it's, unfortunately, you don't want to have to deal with these things as a parent, but it's just, you know, it's part of who you are.

 

Bri (18:58)

Mm.

 

Yeah, yeah, absolutely. And one of the things that you shared, in our interactions leading up to our recording session, and I'll just share it the way that you wrote it to me, the effects of a brain tumor are wide and far reaching. They don't just cause physical harm, but also mental and emotional turmoil. They also affect the family and loved ones just as much, but differently as the patient.

 

What did you mean by that? How is it impacting differently?

 

Beth Muhlhauser (19:33)

For instance, yesterday, like he texted, my son texted me when he got the news about that he might have this heart condition and need a pacemaker and it just, you know, it hits you out of the blue. And meanwhile, you have to go on with like, because not everybody needs to hear like, oh, you know, I just got this news, right? And so you have like your life with like your child or whoever it is that you're caring for, but then you have the other people in your life that care about you, but again, you don't want to dump on them or if you're in a work situation, it's really not the place. I think I'm generally able to deal with it, like in public situations or like I said, when I'm at work every day, but every once in a while, like I'll just start feeling overwhelmed or maybe I'll be watching something on television or hear a song on the radio and I'll just start getting like really emotional. And it's funny because I think I'm a strong person, but I'm also I'm an ugly crier and I over silly commercials, right? So it will kind of catch me and you don't want to fall apart at work or, know, if you're in the middle of

 

Bri (20:32)

You

 

Beth Muhlhauser (20:38)

the grocery store or and people want to you know, be there for you and be understanding, nobody, unless you're going through it, you can't understand it.

 

Bri (20:47)

Yeah, yeah. And I think that, you know, there's so much support for the patient or the survivor and what are the resources available for them and not that caregivers go completely overlooked because there are certainly some resources and support out there, but it's not near to the extent as it is on the patient side. So what have you found to be helpful and useful as a caregiver in this journey?

 

Beth Muhlhauser (21:14)

There's a couple groups on Facebook that, you know, and this is one of the few groups where like people are, always positive towards the other person. Like the other day, I just got felt frustration about something and I wasn't asking a question. I just really needed to vent to somebody.

 

And so I just posted this very long paragraph about what had happened. And I just said, thanks for listening. Most people just express their love or, you know, showing that they cared. and that little, even though it's silly, I don't know any of these people, just knowing that other people cared enough to say, we're praying for you or, you know, it really means a lot because, and it's a way to do that like, you know, sort of a controlled setting where, I got it out there, kind of running, for instance, sometimes I run just to get my stress out, and that's an outlet, or we have a heavy bag, we have a little home gym, hitting that, it's a way to get your feelings out. And so these groups that I'm involved with on Facebook, they've really been such a Godsend and you can post anonymously. So, if I do put personal details in, you know, I don't need to worry about people realize, that's like so and so I know who she's talking about. So you can be completely open and without judgment from people. That's really been like a huge thing.

 

And then I have other people like for instance, I'm in the gym I go to, it's just a husband wife own it. And so the owner of gym and I are very close and so she always checks in and asks how I'm doing, like how did my son's last MRI go or how's he doing? And so like I don't really dump on her so to speak, but the fact that when she reaches out like that, I feel that's permission for me to let her know what's going on, since she did ask and like, you my church, community, like they pray for him. So that's been very, really helpful for me anyway.

 

We have a huge support network. I mean, for instance, my son, when he had to have his surgery and had to recover, he had just started his job about a year before. And so he didn't have a lot of leave and like he didn't have to take a single hour of leave because all his colleagues all donated leave for him for his recovery. so, so just knowing that you like people like that around you cause I think there are people out there that don't have anyone to go through. They don't have like a loved one. They don't have good health insurance, right? Like knowing like, like he is going to get whatever procedure he needs because we have great health insurance. We're privileged, right? So whatever isn't covered, like we can, you we can help him. As awful as the situation is, we really are fortunate.

 

Bri (23:29)

Right?

 

Beth Muhlhauser (23:47)

Every time we get bad news, I was like, but he's still with us. He's still able to do most of the things he loves to do. He's a little cognitively impaired. His memory's really bad and although he was always like that. But I try to focus on, God forbid there's people that they don't have enough food to eat much less get medical care, so thinking of those things and thinking of our huge support network that we have, that's just been a massive source of comfort.

 

Bri (24:13)

In so much of all the different examples and ways that you shared that people are showing support and helping you through this as a caregiver. You're not alone. You've got a lot of people in your corner. And also there's maybe a small component about mindset, that piece that you were saying about, you know, it could be worse.

 

There's also an aspect of that though that we want to be careful with that because, you know, without the desire to diminish the experience, or be dismissive of it because even though it is true, yes, it could be worse. The other piece is this is the reality that you're facing right now, regardless of whether it could be worse or not. It's still a really crappy situation to be in.

 

Beth Muhlhauser (25:02)

Oh yeah. There's days where I'm just so angry. Why are we going through this? Why is my son going through this? He didn't do anything to deserve this. And you see like these horrible people out there, on the news, doing awful thing and there's no like consequence and it's not like he's not being punished, But sometimes it feels that way. And like when you think about, well, if, if, if

 

Bri (25:20)

Mm-hmm.

 

Beth Muhlhauser (25:25)

there's fairness, or you think of karma, right? I'm a big believer in karma. You get what you give. And I try to give a lot, and help people but the idea of trying to ward off something bad like this happening. And so, yeah, so believe me, I definitely have days where I'm just angry at the world and I get pissed off.

 

But I try not to focus on that because being angry, it's not good for your your mental health, your physical health. And it's certainly not good for the vibes I'm putting out for my son, because I want to be positive for him when he's feeling down. Although I will say,

 

Bri (25:57)

Hmm.

 

Beth Muhlhauser (25:58)

he actually, comforts me. And he's like, mom, he's like, it's fine, it's going to be okay, we'll just deal with it. And so he's, I think become a lot stronger over this whole thing.

 

Bri (26:10)

What is all of this teaching you about yourself?

 

Beth Muhlhauser (26:12)

Well, it's funny, like I always thought of myself as a resilient person and then when the news of this first broke, then I, I was strong for him, but there were times where I know I'd have some time to myself and I, that's when I would cry and, and my son's room is on the other side of our room. I guess the one night he must have heard me because he came in off the door and asked if I was okay. But I didn't fall apart. I had those moments. And it taught me that I really am as resilient as I thought I was.

 

My parents passed away when I was in my senior college. I always thought, if I can deal with that, I can deal with anything. But but your parents are supposed to pass away before you. When this happened to him, I just I don't know what I'll do. I can't go on. God, if he dies, I'm just going to take myself out because I can't I wouldn't be able to function. And and now as the months have gone on, I don't think about that anymore, thankfully. But but you know, I I still wonder, what would I do? Because he's my only child and I love him more than life itself.

 

But last year, after we found out he was going to need radiation. just remind myself of how resilient I believe I am. I got a tattoo of a lotus flower and a unilome on my arm so I could look at it when I was feeling just completely helpless and just about to lose it.

 

And I look at that to remind myself that I really am resilient, even if I don't always feel that way. I've never had a tattoo. I always wanted one, that was kind of a big moment that I did that because I actually felt like I needed the reminder because there were days where I just felt just not getting out of bed.

 

Bri (27:43)

Yeah, I love that. And I recall that that's how you and I originally connected. The Facebook group that you were mentioning, I posted in there, who has a tattoo related to their brain tumor journey? And are you willing to share a picture of it? Because I had started thinking about the idea of getting a tattoo myself that tied into my own journey and ultimately I did. But it's just, you never know what is going to bring two people together and how you might connect. What would you want someone else to know who is taking care of a child with a brain tumor?

 

Beth Muhlhauser (28:10)

Sometimes I feel like it's worse for me than it is for him. You can't love anything more than your child. And I have to remind myself, no, it is, he's the one going through it. And so you have to always have to look at it from that perspective and not to ignore your own feelings and emotions.

 

When he's upset about something, say, well, I'm going to have headaches, mom, or I'm going to get dizzy. And I try to say, well, do this to that. your diet isn't good. You forget to eat or, you need to get out in the sun more and walk. And I have to remind myself just back off a little bit, make clear that you're there for them when they need you. Mother them, don't smother them. And that's hard, especially with an adult child.

 

I remember in the hospital after his surgery, he like grabbed my hand at one point and just was squeezing it so hard and I almost wanted to say, but I didn't because I, you know, he clearly needed that. And that's when I realized, wow, like he's, he's really scared. He didn't say anything. All he did was like hold my hand, but, squeezed it like really, really, really tight for a few minutes and then he fell asleep. And so I always think back to that moment because it was him reaching out to me because he needed me for at that moment to hold my hand.

 

Bri (29:27)

Yeah.

 

Beth Muhlhauser (29:29)

So I try to remember that, like, he'll come to me when he really, really needs me to be there, make clear you're there for them, but it is their life and you need to value what they're going through as well. So that's one thing I have to remind myself that, you know, we're two separate people. And even though we're in a similar experience, it's not the same experience, if that makes sense.

 

Bri (29:50)

And one of the things that jumps out to me is, no matter whether this diagnosis is part of the equation or not, you're at a phase where you're transitioning your relationship from parenting a child who's a child and developing a relationship with your child as an adult. And that in and of itself can be a challenging transition. And so to add something like a brain tumor diagnosis to that transition makes it that much more complex.

 

Beth Muhlhauser (30:28)

Right, because he was just to the point where he was really starting to find his independence. He'd gotten a full-time job and a girlfriend, and they were starting to look at houses and things. And then this blew up, and then he kind of engaged in some reckless spending and and blew everything he saved. I think that was kind of like a stress reaction to the news.

 

But yeah, now he's kind of at square one again, so he's like still living in our house. But again, yeah, you have to remind yourself that he's living here, but he's an adult. And so, you have to treat him like an adult. Like you have to be there for him and make sure that like the medical side of it gets taken care of and he doesn't ignore that. But you also have to be respectful that, yeah he's an adult and he can leave at any time he wants. And if he doesn't want to handle something a certain way or doesn't want you involved, you know, because he is independent and doesn't want you knowing that part of his business, you have to respect that as hard as it is. That's something I personally have to struggle with that because, like I said, we have always been very close and it's kind of hard to cut the apron strings, especially in this situation. That's something to be mindful of, but it is very probably one of the most difficult aspects.

 

Bri (31:42)

Yeah.

 

Beth, how has all of this rewired your mind?

 

Beth Muhlhauser (31:51)

I think I said earlier, like I definitely live in the moment a lot more. For instance, I have a very stressful job and work stress would sometimes derail me or completely affect my mood or I'd wake up at three in the morning thinking about one of my cases and I still do that, but this has really put things in perspective.

 

Not that that stuff isn't important, but it's separate. I am able to compartmentalize other things. Now I know what people mean by living, live in the moment because you might not get tomorrow or tomorrow might look completely different.

 

Realizing that there are some things you just can't control. And so you just have to go with the flow, which is very hard for me. Surprisingly though, it's made things a lot calmer. I almost don't want to say this out loud because I don't want to jinx it, but I haven't had a nightmare about his situation yet. I haven't woken up in the middle of the night in a cold sweat worrying so somehow I've been able to compartmentalize the terror part of it and just focus on how blessed we are that things

 

Bri (32:44)

Mm.

 

Beth Muhlhauser (32:48)

are going well right now and hopefully they'll continue going well and if there are bumps in the road we'll just have to deal with them because that's that's life right? Like, and people get sick, people die, people become disabled. And you either, if you're gonna go on, if you're gonna keep living, you just have to like take those things as they come and manage them the best way you can.

 

Bri (33:09)

Yeah, absolutely. It's like you don't know how you will respond until you're really, truly, genuinely faced with it. And that's when things come into clear vision, I guess you could say, or clear sight. 

 

Well, Beth, thank you so much for joining and being willing to share about your experience as a caregiver. Wishing you, your son and your whole family all the best in the journey forward. I know he's still got a lot ahead of him as do you. Just know that you've got a lot of people in your corner on our side of things rooting for you and your family. And would love to have you back with an update in the future and hopefully a really positive one maybe with your son joining in.

 

Beth Muhlhauser (33:59)

I'd like that. We’ll see what happens. Thank you so much for inviting me. I enjoyed this and hopefully it can help others.

 

Bri (34:01)

Yeah, yeah, that's the intent is to help people not feel so isolated and alone.

 

Bri (34:13)

Thank you for being part of the rewired minds community. Full show notes, resources, and a transcript for today's conversation can be found at rewired-minds.com/podcast. If you or someone you know has a brain tumor story to share, I'd love to hear from you. Visit rewired-minds.com/guest to learn more about collaborating on a future episode.

 

This podcast is a one woman labor of love. It's a true honor to bring it to your ears and facilitate connection among the brain tumor community. If this episode resonated with you, please rate, review, and share with someone who might need to hear it.