Episode 230: When Caregiving Doesn't Fit the Mold: Roberta Schneider’s Origin Story

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Episode Transcript

The words, "Call your doctor now. Something is seriously wrong." shook up Roberta Schneider's life more than two years ago as she watched her husband's life turn upside down. 

A dedicated health communicator and now a caregiver, Roberta is a passionate advocate for mental health. She's published two books to help family caregivers: Living With A Colectomy, A Guide For Families and Holiday Stress When You're Caregiving: Caring For You And Your Loved Ones. Her hope is to make sure no one feels alone in their caregiving journey.

Charlotte Bayala: Roberta, thank you so much for being here. 

Hi, Charlotte. It's great to talk to you today. Thank you.

How about we start with a little bit of your caregiver story? 

Okay. 

Roberta Schneider: I think a lot of people, when they think about a caregiver, they're always thinking about a long term caregiving situation where maybe you're helping a parent with dementia or a spouse with cancer, but caregiving has a lot of seasons and different layers to it.

 My caregiving story is kind of one of those that, that does have the seasons to it. My first experience as a caregiver, was about five years ago when my daughter, was in eighth grade at the time, had knee reconstruction surgery. And that ended up meaning leading to about a year and a half of rehabilitation and coming back, everything from navigating how to help.

Your nearly full grown child, navigate things like how to get to the bathroom without damaging their knee permanently to, getting around the house and navigating school to navigating, pain management. Thankfully that was a shorter season in itself, but, my more recent extent, so to speak, is more of a lifetime commitment.

 It started about two and a half years ago and my husband decided to go to a chiropractor, which doesn't sound out of the ordinary. We all have aches and pains. And he gets a phone call from the chiropractor and that says you need to call your primary care physician. Something is very, very wrong.

Wow. It's not the words you want to hear. No. Based on the imaging, we found out that he was built in a way that, that few can imagine. And, we played stump the physician with a lot of specialists over the next 13 weeks. But the short version was that his colon had, for some reason, grown to about five times the normal size.

 So instead of being in the lower part of your, abdominal area, and it actually expanded past your stomach, collapsing part of the diaphragm, pushing up the lung. So the lung was collapsed and moving the heart over to the center of the body instead of on the right side. So it meant that we had a summer of multiple surgery, very extensive surgeries that have been.

You know, collated across, different specialties, from colorectal to thoracic and had stent in, our heart center for recovery. But not only is there the recovery from procedure one and procedure two, but then there's those trickle down effects that you're living with of, you know, sometimes procedures, don't mean that.

You're going to go back to the way you were, right? Having colon resection surgery meant that he would ultimately live what's called short bowel syndrome which has impacted everything from daily living and daily habits to what he can eat to the fact that certain nutritional Deficiencies are causing Medical effects as well.

So, you know, we're having to navigate That journey as well. It's very interesting going through those seasons of very high intensity, such as when my husband was hospitalized or when you're seeking, urgent answers to just the day to day of, okay, we're not in acute crisis anymore, but we're definitely not to the way we were before.

And I think that's something that's Not unique to people and we don't always see ourselves in that caregiver role that way, but it's true and especially with so many people Developing chronic medical conditions. I read a story the American Psychological Association just came out with some research just indicating the huge amount of stressors that People have, and a lot of it is coming with a huge increase in chronic medical conditions, over the last few years too.

And I think it's just a common problem that a lot of us are dealing with is, is just navigating our new normal. Right. 

Charlotte Bayala: And, and so even with that, with chronic illness, because that is basically where your husband is right now, it's difficult because there's not a tag word that people can visualize.

It's not, he has cancer, he has to learn to live with cancer. He has this, he has a chronic problem that doesn't really have a name that is simple to say because, it's so complicated. And it's true, as people begin to experience more of these long term chronic issues that, will require them to have someone to help care for them.

 The, look of caregiving will change because now it isn't, an Alzheimer's caregiver, a cancer caregiver. It could simply be someone who has a caregiver because They, have, a chronic heart issue, but they're not in heart failure. We like to label things, so often. And so in your case, I can imagine it's been difficult to figure out what caregiving looks like because you can't liken yourself to maybe a bigger subset of caregivers.

Roberta Schneider: It is very unique. I mean, you know, in our situation, I remember the colorectal surgeon kept going off about how impressive this case was, and he was actually genuinely disappointed that they couldn't find like a birth defect roots to the problem that he could write a medical journal article about.

So that is very escalating. And especially when, people say, Oh yeah, you should expect this in six weeks. Well, that wasn't our six weeks, you know, the realities of his, health condition in with a surgery. It just meant that his Life is different and it's not different in a way that you really want to have that communication about, People don't understand looking at him most days that he's dealing with chronic pain that he's dealing with short bowel syndrome. It's not that he's not sleeping through the night or They can see it and they can kind of adjust to it and appreciate it on the days where he really truly struggles to walk And those are probably some of the hardest days for me, when, it's truly, his, his chronic conditions are affecting mobility and that sort of thing.

 But it's hard because, looking at him, you're like, what do you mean? Well, yeah. And, and then, you know, we're, we're actually, you know, doc in the process of documenting, you know, what does this really look like? Because after two years of this, I am so used to it, I'm used to my husband getting up all a night for 

 Various reasons. I'm used to all of these things, and what's not normal to us is not normal to the rest of the world. So, I liken ourselves, in a condition like s bowel syndrome. It's like he's a. A grownup, infant eats, sleeps and poops because that's just the way the body has to function with what it's gone with.

Yeah. And, but that's not something that you're gonna discuss around the kitchen table, dealing with a layoff, everyone's like, well just go get a retail job or something to fill in the gaps. You can't, when your body decides, okay, this is my time and I'll see you in 45 minutes, you can't just walk away from a register or from a Exactly.

Delivery during, so yeah, having to, to educate and reeducate people, it's. It's, very humbling, you know, about the realities of situations that you're working with. 

Charlotte Bayala: Does that make caregiving harder for you? Well, I mean, it's definitely different than when you had to care for your daughter because you knew there was an end goal to that.

And a lot of that was a combination of mothering, which is still a, a type of caregiving role, right? So it was putting you in a higher state of needing to care give for your daughter, but for your husband, You're caring for a person who then people around him are having difficulty acknowledging and accepting the fact that he has a chronic illness and that has caused him to not be able to work but then is that harder for you?

Is it harder to? Not be able to say, I'm a cancer caregiver or I'm caring for my parent because the people around you know what that looks like. And if you're caring for a person who then people are having trouble accepting or even noticing that he's sick. Then do they just approach you in life as a normal person who doesn't care for someone any more than an apparent would?

 Does that make it harder for you , in accepting and stepping into that role in giving yourself the space, to be that caregiver. 

Roberta Schneider: Yeah, I think it's hard in a lot of ways because you almost have that self doubt, because I don't fit into that model, but a lot of us don't fit into that model of, taking care of grandma and I have to check in on her, you know, on my way home to make sure that she has turned off the stove at night or something like that. There are days, like I said, my husband struggles to walk and, I'm a little more hands on, where I'm, I reconfigured my office where I'm, available to, grab things if I need to.

But he is incredibly stubborn and tries to find the ways to do things for me, and he's so loving and so giving we all want to be proactive and we all want to be, helping and doing things. So we love and embrace the days that he has amazing days and we enjoy those days.

We go for walks and there are days where all we're going to be able to do is maybe just hang out and watch a movie together. And, you know, it's still time and it's still, it's still the. Loving person I married and chose to spend my life with. 

Charlotte Bayala: Yeah. But does it make it harder for you when, the PTA person at your daughter's school comes and your husband is in a, not in a very good state health wise that week, do you allow yourself to say maybe just to yourself, I can't do whatever she's walking up to ask me to do.

Because I'm trying to do my life and care for my husband and, but then feel that pull of, well, people don't really understand, how much caregiving for my husband really means how much it takes because they don't really see him as being sick. 

Roberta Schneider: Yeah. There, there's still a level of emotional caregiving regardless.

And I think, just because you're not Maybe hands on and helping them in the bed or something like that. Does that mean that you're not absolutely, checking in on them, making sure and, how's your pain levels and, those kinds of things. It's hard when it's not visible.

 I got invited to a couple's event at our church and I'm like this is not a good time right now with him within his home. And having to re educate looks like, okay, just because you don't see me there or whatever doesn't mean, A, I'm not interested or B, You know, what have you?

 There's just a lot of factors and I think the one good thing, this sounds really strange, but the one good thing I would think about coming through this pandemic and then this caregiving experience is that we've all learned to give ourselves the grace to say, I can't take an extra thing right now and say no.

 And that has been something. I think I'm doing better on that. You know, in the 2010s, that, that I'm, you know, I used to always be one of those, I will do that and I will be the one who steps up to do it. And it's okay to say that it's time for somebody else to take the reins on it. And it's okay to say, I can't do this, but I can do this. Being able to say here, this is what I can bring to the table and it's acceptable or it's not acceptable.

And it's just okay for you to state your boundaries as somebody else can state their boundaries. 

Charlotte Bayala: It's good that you can do that. I know caregivers can see a lot of themselves in other caregivers, but it, it, there's a certain sense of belonging that comes with seeing someone else who's a caregiver for the same type of situation.

 So you being able to set boundaries while caring for a person that doesn't necessarily give you that opportunity. It's so powerful for you to be able to do because a cancer caregiver, you sit in the waiting room and, and you can see other cancer caregivers. You can see other people going through, but since your husband's, medical condition is so much more different, for a doctor to say that he's exceptional and get excited about him because they don't see that often.

puts you in a category of caregivers that exists that other people don't really acknowledge because we're not always all aware of what are the other things that are happening, under the, radar of the bigger pictures that people like to look at with cancer, with aging diseases, with caring for kids who have disabilities, I think it's good to highlight and remind people that there are so many different styles of caregivers.

So the person that lives next to you, you know that their husband is a little sick, maybe, and you're, you know, they can move and they leave the house and they come back. But if there's an illness, if he has an illness, if the wife has an illness, that other half of that relationship is a caregiver. 

 I can imagine it makes it harder for people who care, for a family member that have something that doesn't fit into those big categories, it's harder for them to first of all, see themselves in other people. If your husband is exceptional, I'm pretty sure. There's not maybe a support group that encompasses someone who cares for all of the things that he's going through and that, makes it harder for you to see yourself as a caregiver, , or to feel, validated in the things that you're going through because You're with people who understand, that love him and understand that he's not well, but can't really wrap their heads around everything that you do and how your life has changed, because of how his life has changed.

Roberta Schneider: It's the small ways where things have changed. That's the thing. It could be, daily habits. It could be, the 1 thing I miss, I would love to ever go back again and just take a day hiking trip. That is probably never gonna happen again. What does that look like for me to enjoy, things that I used to enjoy.

 Things that I used to enjoy with my family. That's something that I think a lot of us have to navigate too, or it's just, recognizing in those small moments and recognizing too that what's true today may not be too true tomorrow. 

Charlotte Bayala: A lot of the time, we just want people to see, to see us, like really see us. I get that they can't Get inside our skin and feel our emotions and, have the, the background and the perspective of everything that we've been through. But I find sometimes the worst thing someone can tell me is.

 When they become a cancer caregiver and they know me, they'll say, Oh, now I get it because that tells me you didn't really get it before, and, the support wasn't there in a way that you now want for yourself because you didn't fully understand. That is not a judgment on any person who, becomes a caregiver and is like, Oh, holy crap.

Like this is, this is real. Now I understand why, my friend didn't sleep for three months. She never showed up to any parties and wouldn't come to coffee and didn't have that energy to do all these extra things. But there's a little bit of sadness that comes with someone. seeing you because they are now a caregiver.

 All of us want to be seen without someone having to become a caregiver. Oftentimes it could be just I'd love to have coffee, but how about if we do that at my house because I can't really leave or I don't really want to get dressed or I don't have the energy to drive anywhere.

Roberta Schneider: The biggest gifts when my daughter had her knee reconstruction surgery, because we literally had several weeks where she was not allowed outside contact, not only from the risk of Bumped her knee the wrong way, It would have been disastrous. Like permanent damage. And just having a friend come over and say, Hey, I'm going to hang out with you guys and watch movies.

 Such a small thing, but just that gift of time and presence cannot be understated. I think that's Really something that we tend to forget about because we always like to post big moments online and we like to, you know, hey, we're doing this or, you know, because we're excited and, that's very human, but, for those who feel left behind, whether it's intentional or unintentional, because they've got other things that are.

Truly more important and I think left ones are the most important things we can we can care for in this world, you know just being able to say hey You know what? It doesn't matter where the scenario is or what's going on. You are important to me So I don't care if it's we're gonna have a coffee over zoom one morning or let's go for a walk or 

let's go to Target and do grocery shopping. I mean, just that gift of time, and presence with one another is huge. 

Charlotte Bayala: Right. And to give you a chance to just be yourself. Exactly. Because, when someone becomes a caregiver, generally the, attention is on the reason why they become a caregiver.

First of all, it's not, Oh my goodness, you're a caregiver. It's usually a holy cow. I just found out your husband was diagnosed with Whatever, or I just found out you had to move a parent in to your house because They need extra support. So then you become in some people's eyes, you're, you're the caregiver, right?

So you're the spouse. Exactly. You're the spouse of so and so and you're also the caregiver of so and so, but that detracts. from you as a person. And so to have someone just come and say, I just want to be with you as a person. We don't have to talk about caregiving.

 You could tell me I want to vent and totally unload on a person that won't take it personal. That can, for a lot of people, be the biggest gift that you can give them, like you said, because you're seeing that person as a person that needs a community, that needs to have a touch point with the person.

 Sometimes it's hard for caregivers to feel comfortable giving that time and that's okay if you're listening to this and you're like, well, you know, yeah, my friend does keep asking if they can come over, but then I have to clean the house and no, just 

Roberta Schneider: I love my friends who love me despite my health.

Like all these years and my house will never get any better. It doesn't matter.

Charlotte Bayala: There's something to be said to your house looking like a shit show too sometimes, because then you like really get an idea of, wait a minute. Every time I've come here, this has been a.

spotless area. And now, okay, those piles of clothes, do you need some help with that? I mean, let it let it be messy because that's what your life is. That's what it looks like. Don't let that be a reason why you don't let someone who loves you to come and just spend time with you. If it causes them alarm, then maybe it should.

Maybe that's like a system that, you know, have your friend come over and be like, okay, how does my life look right now from the outside? And if they're like, yeah, we need to do something about this, then at least you have someone who can say, all right, now I see what you need, right?

Oftentimes, it's hard for you as a caregiver to let someone into the messiness of your life, but also to even figure out what it is that someone can help you with, when people ask you. Absolutely. 

Roberta Schneider: That was one of the things, the good lessons that I took. From, when my daughter had her surgery is immediately when one of my friends, she's like, what do you need?

And I'm like, I have no idea what I need. Yeah. And she just started throwing out lists of things. It wasn't just a meal train. It was, do you need rides for kids to get to places? Do you need, a gas card? Do you need paper plates? I had so many paper plates. God's biggest gift. So that was my piece of advice for everybody.

Get paper plates. You've got a situation. Because, the dishes are the bane of my existence. And it's the constant fight in my household. And so taking that fight away from me was worth the 5 that somebody spent on paper plates. So just outlining those lists. And so when my husband was approaching his surgeries, I actually remembered that and took a step back.

I'm like, okay, what worked really well? What would have helped me better that time? It was busy summer schedules, kids had camps, jobs to get to, you know, how, how do I, how do I navigate all of this and driving to another county for a hospital? So, just taking that step back and saying.

So many of my needs in that immediate time were met and I'm so grateful to the people who were able to step up when they could. And just by being very raw and saying this is a problem and maybe my community can help solve one small piece of it. Can't fix the health issue, but you can remove some of the stresses that you're dealing with that are piling on, on top of what your family is going through.

Charlotte Bayala: And, and knowing that. You are a person of value to be asking for that help. Mm hmm. And it's okay that, if the help is imperfect, too. I think that's the problem. You know, we want the help to be perfect because it would, we want it to replace what we would have done. And if you don't like pepper on your mashed potatoes and someone brings it and, and it's just covered in pepper.

It's all right. That would be horrible.

Roberta Schneider: like scrape it off 

Charlotte Bayala: and just enjoy. So I think it's, changing your expectations of the help that people give you, because they're, they're putting in the time and the effort to help. Absolutely. Absolutely. And. And let them know how much you value their help because the help comes on strong in the beginning, but you might be finding now two years in.

It might be harder to get, that when illnesses are new, there's this need rallying behind. Yeah, definitely. But you're still a caregiver with the same types of needs two years in. So, you know, It's harder to ask for them. But a lot of times, then the way you can ask for help is by setting boundaries for yourself, and then that boundary helps you tell someone... I can't this year. 

If you enjoyed hearing Roberta’s origin story make sure to check out last week’s episode where we both talk about her book and the 4 things to keep in mind while stepping into the holiday season this year. 

Thanks for listening.