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Summary
In this episode of Care Lab, host Emilia Bourland is joined by Consuela Marshall, an experienced occupational therapist and caregiver, to discuss the challenges and priorities of caregiving. The conversation delves into the personal and professional experiences of caregiving, highlighting the emotional and practical difficulties that caregivers face. The discussion also touches on the importance of setting boundaries, the evolving roles within caregiving, and the need for accessible resources and support for caregivers.
Key Takeaways
- Caregiver Boundaries: Setting clear boundaries is essential to maintain personal health and relationships while providing care.
- Personal Experience: Even professionals struggle with caregiving; it's a learning process that requires adaptability.
- Resource Accessibility: There's a pressing need for accessible resources and direct support for caregivers, including legislative changes.
- Role of Physicians: Physicians should have more time to listen and provide referrals, but caregivers also need direct access to specialized support like occupational therapy.
- Communication: Open and honest communication with the care recipient is crucial for making necessary adjustments that benefit both parties.
Transcript
Emilia Bourland, OTR, ECHM, CFPS
Okay, yep. Good morning, everyone. Welcome to Care Lab.
Brandy Archie, OTD, OTR/L, CLIPP (02:39.31)
CureLab Day, I'm so excited to be here with you all.
Emilia Bourland, OTR, ECHM, CFPS
Yes, and I'm super, super excited for our guest today. We have a fellow OT here today, Consuela Marshall, who is like, can we just acknowledge right away, first of all, how much fun Consuela is? Second of all, how much like insane amount of helpful information Consuela knows? Because she's been an OT for 25 years. I think maybe a little over 25 years.
Brandy Archie, OTD, OTR/L, CLIPP
Yes.
Emilia Bourland, OTR, ECHM, CFPS
She graduated from LSU MC School of Allied Health 25 years ago. She's been doing home health OT, I believe pretty much since that time, although Consuelo can definitely correct me if she wants to. And I think she's actually worked for the same agency in her community for something like 20 years, which means that Consuelo knows her community. She knows her stuff. Consuelo is also a family caregiver herself. Basically, you're gonna love her.
Dear audience, dear listeners, you're gonna love her, I think, as much as we love her, and we do. I heart her all day long. Welcome, Consuela.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Thank you so much. I appreciate the introduction. So yeah, an OT over 25 years and with that same agency up until recently and just loving the community. Initially there in home health, seeing a whole generation of families that have since moved on and I'm now treating.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
the caregiver who was a caregiver at that time and I was servicing their mom. And now seeing the next generation is quite eye -opening in how caregiving affects generations and how using the right tools and having the right approach to caregiving affects...
Emilia Bourland, OTR, ECHM, CFPS
Mmm.
Brandy Archie, OTD, OTR/L, CLIPP
Hmm. Hmm.
Emilia Bourland, OTR, ECHM, CFPS (04:31.8)
Mmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
how that lifestyle of that person continues. So being able to see those generations and being involved with those generations, seeing them at church, seeing them in the grocery store, they're like, hey, Consuela. And I'm like, okay, I know you, but I don't know your name type of thing. I get that a lot. But I just love the privilege that I've had of being in a community of probably,
Brandy Archie, OTD, OTR/L, CLIPP
-huh.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
three or four little cities clustered together and really serving the community and really feeling like I've contributed to really the wellness and increased quality of life of our aging adults here. So I love it. Yeah.
Emilia Bourland, OTR, ECHM, CFPS
But listen, you just got yourself in trouble because now people are going to ask you, what's my name? When they see you in the grocery store, they're going to be like, hey, Consuelo, what's up? Do you know who I am?
Consuela Marshall, OT/L, CAPS, CDP, CGCP
But in my defense, not a lot of them remember my name. Unlike it called Contessa Condoleezza, I've been called a lot of things and have a lot of made up names that I answer to. So we go into that understanding that we're not going to hold that against each other, but we like we're there for each other. Yes.
Emilia Bourland, OTR, ECHM, CFPS
Okay, that's fair.
Brandy Archie, OTD, OTR/L, CLIPP (05:46.51)
Mm -hmm.
Emilia Bourland, OTR, ECHM, CFPS
There you go.
Brandy Archie, OTD, OTR/L, CLIPP
Because we have so many questions for you just about how practice has changed over time and just having that perspective of multiple decades with the same community of people. But I can't ask any of those questions yet because we haven't started with our icebreaker question, which is not too scary. It's about something that's about to happen. So I just saw that there's an article came out that Bradley Cooper is making a documentary style film.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Okay.
Brandy Archie, OTD, OTR/L, CLIPP
on PBS about family caregivers. And so, exactly. I mean, as soon as it's gonna come out next year, come on. Come on and talk about it when it gets close to releasing. But before that, what we're gonna answer is, I wanna know what things, if there's two, maybe two things, because I'm horrible at answering just one. So if there's two things maybe that you could think of that you would really want them to touch on in that, that was important to you.
Emilia Bourland, OTR, ECHM, CFPS
Hey Bradley Cooper, you wanna be on the show?
Consuela Marshall, OT/L, CAPS, CDP, CGCP
All right. Yeah. Yeah.
Emilia Bourland, OTR, ECHM, CFPS (06:38.52)
This is your official invite.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes, I saw that. I saw that post and I'm excited about the increased attention as in the media in regard to family caregiving.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Good question. You know, I'm always going to go back to the resources. When are the resources going to arrive to the family caregivers? The talk is needed. The awareness, there needs to be this heightened awareness of the stress and the lack of resources that are available to caregivers. But they're also, can they still, can they use their fame and position and really
go the extra yard of getting those resources expedited to the families. The waiting lists are long and the policies are slow to pass as the bills are going into the different government parties. The question I would say is what can be done on another level? Yes, this is a place to start.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
But what can be done now for those who are waiting in the trenches? Because there's gonna be a gap. I mean, the people who are in the trenches now are suffering and we're seeing the suffering. I just wish there could be this pool of their resources, their things that, and their voice that can help expedite those resources to the community.
So I'm proud of what he's doing and I'm appreciative of it. And I know of one of the families that are gonna be, that is going to be highlighted on his documentary. Well, I don't know. Well, I am in a close acquaintance just because we met on IG and I've had the privilege of being involved in a webinar with her and doing some things with her, but she's very...
Brandy Archie, OTD, OTR/L, CLIPP
wow.
Emilia Bourland, OTR, ECHM, CFPS
Ooh, you fancy.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
vocal in sharing her life story on Instagram. And she recently posted that she will be included in a documentary. So I think he's on the right start is there. So I'm saying, yes, thank you for what you're doing, Bradley, but things need to be done now. The resources need to be done right now for those who really need it.
Emilia Bourland, OTR, ECHM, CFPS
Yeah, I would say, you know, I mean, honestly, I could like, I could like say a lot of things, but I would say I think that the most important approach for anything that's really investigating the world of family caregivers is it has to look at things from multiple sides of the equation. Like, you know, as Consuela highlighted, looking at things from the legislative and policy side, but also, you know,
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
this.
Emilia Bourland, OTR, ECHM, CFPS
talking with healthcare providers that are trying to provide these services, really understanding why sometimes that works and why sometimes that doesn't and where those gaps are. Because a lot of times we're talking about resources. One of the resources that family caregivers have a lot of difficulty accessing is that professional help that they can't necessarily always directly access because they are the caregiver, not the patient, right? And so I think looking at it from a holistic approach to really see like,
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
That's right.
Emilia Bourland, OTR, ECHM, CFPS (10:34.36)
what are all the pieces of this puzzle as much as that's possible. I mean, I think that's the key to putting together something that's really special and unique and that's going to help inform the general public and the situation overall in a way that can move things forward positively. And also, you know, you should probably come on Care Lab.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes.
Brandy Archie, OTD, OTR/L, CLIPP (10:59.47)
Absolutely. This is your open invitation.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yeah.
Emilia Bourland, OTR, ECHM, CFPS (11:02.2)
And I mean, that's an open invitation. Hey, I mean, if you needed, we could probably make time to be a part of this as well. I mean, I know we were pretty busy, but it's possible. It could make some exceptions. I'm not saying, I'm just saying.
Brandy Archie, OTD, OTR/L, CLIPP
we can make some exceptions.
Brandy Archie, OTD, OTR/L, CLIPP (11:22.19)
I think in addition to what y 'all both said, the thing, you know, storytelling is so important and almost nothing gets done without telling a story, including legislation, right? Because what is our process in this country? It's you got to get a representative on some part of Congress to feel and understand the importance of your story to be like, yeah, this is important and we should try to fix it. Like, that's the only way this stuff gets done. And so I think that...
Emilia Bourland, OTR, ECHM, CFPS
Hehehehe
Brandy Archie, OTD, OTR/L, CLIPP
creating a documentary style film about it is going to, of course, lean into that. And documentaries do a great job of talking about how horrible things are. And that's true, and they should, so that people can feel the weight of what nearly everybody encounters in their life at some point, at least once. But nobody expects to deal with it if that makes, it doesn't make sense, but that's what happens. So I just hope that it doesn't stop short of just like talking about the problem.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
That's it.
Brandy Archie, OTD, OTR/L, CLIPP
without giving actionable solutions and putting some actionable solutions into play. Not just at the top level, but also at the individual, family caregiver level. You watch this whole movie and here are some things that you can connect with today that can help you.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
this kind of filter down.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes, exactly. Totally agree with Ed Brandy. My hope for the whole thing, yes.
Emilia Bourland, OTR, ECHM, CFPS
That was a good way to start the conversation. I feel like now, I mean, we have lots of things that we got to talk about with Consuelo, but we could spend a lot of time going down that rabbit hole.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes.
Brandy Archie, OTD, OTR/L, CLIPP (12:59.63)
Yeah, I do have a question for you though. So your first thing was like resources. And so what is, I can guess, but I want to hear from you. What is your definition of resources? What are the resources that are missing and that we need?
Consuela Marshall, OT/L, CAPS, CDP, CGCP
gosh, so many. You know, I would just start by having that, that true, I'm gonna really pull from something, Amelia said that, having that listening ear, a resource of allotting the time for physicians to really serve their patients and the caregiver. They're just, it just has to start with, you don't know what's going on in their life. If there is not a code,
or something that will allow a physician to sit down and take the time to really see what's at the heart of what's going on with his patients. Because if they have only a certain amount of time, because guess what? They have to get paid too, and they have a lot of clients that are in the waiting room. But in making even just legislature or letting them to be heard on a level where somebody can get eye to eye with them so that,
they know what the true needs are and that there are things put in place where they are directed to these different resources that are being made, that can be made available to them. Caregivers are often pushed to the back in doctors visits and just in their role because they're often not seen and heard. So I think starting at the bottom with like, let's make it.
You know, it's good to have these shows and, you know, in looking in the media with the CBS, I believe, was the network that did a series of different morning shows with Gayle King about at least three or four families talking about this caregiving crisis, which is good. It needs to start. Everyone needs to be aware of the over 53 million family caregivers.
But how do you get their ear? How do you know what the need is unless somebody down at the level of where the care is being provided can really tap into what the needs are for that individual family? Yeah, this is good and it's great to highlight and get those stories. But if it's not gonna come back to, you know what, after the story, we need to have legislature where there is something on the grassroots level that allows the...
Consuela Marshall, OT/L, CAPS, CDP, CGCP
position because it has, you know, the physical, the medical staff has to be a key part of getting those resources, meaning first of all, letting the voices be heard and then having ways of effectively funneling these resources and channels to caregivers so that they can tap into the respite care, tap into having more
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
accountability for what happens at discharge. What are more options at discharge for those living with dementia or those that need that extended, that additional stay in the hospital instead of sending them home so long and so quickly into home health, which is not always the appropriate setting. So I think around ways of listening to caregivers and having that ability to have those channels set in place.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Emilia Bourland, OTR, ECHM, CFPS
Mm -hmm.
Brandy Archie, OTD, OTR/L, CLIPP (16:22.03)
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
is the resource that needs to start. If you give them an ear, caregivers will really tell you what's wrong and what they're needing. But unfortunately, not being heard.
Emilia Bourland, OTR, ECHM, CFPS
Mm -hmm. Mm -hmm. Yep.
Brandy Archie, OTD, OTR/L, CLIPP
Yeah.
Emilia Bourland, OTR, ECHM, CFPS (16:42.36)
You know, can I piggyback off that a little bit too, because I think that the way that our healthcare system is set up, you know, we have the physician at the center of this ring and then it's their responsibility to do everything out. But I'm gonna make a very specific legislative suggestion here that would be really helpful for caregivers in particular. And that is direct access to people like occupational therapists. So what that means, dear listener, is direct access is basically where instead of having to go to your physician to get an order to go see,
an occupational therapist or a physical therapist or whoever you need, you can actually just go to see that person directly without having to go through your physician first. And that's available on a varying level through some states and in some states it's not at all. But the fact is that a lot of times the physician solves a portion of the problem, right? Or they can help a little bit with the medical side of things. But if you really need someone and caregivers need someone who is
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes.
Emilia Bourland, OTR, ECHM, CFPS
boots on the ground, knows what their day -to -day life looks like, can actually provide them with training, suggestions, and resources that practically tell them what to do in those situations. And that person is the occupational therapist. So if we can provide direct access to occupational therapists for family caregivers without having to go through that additional layer of someone who is stressed out, doesn't have enough time,
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Emilia Bourland, OTR, ECHM, CFPS (18:10.84)
maybe doesn't understand everyone's role in the medical team or everyone's full scope of practice, then we can do a lot of good for family caregivers. And that is a very specific legislative change that could happen that would make a big difference for folks.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
I like that, I like that a lot. I say, is this like this, just getting to the talking about it and really getting, you know, more input after these covers, after the documentaries with extended or broadened, heightened look at the caregiver stress is having conversations like this that would say what is not working and what are some feasible changes that can be made to...
Brandy Archie, OTD, OTR/L, CLIPP
Yeah, that.
Emilia Bourland, OTR, ECHM, CFPS
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
discover what those resources need to be that are going to help the family caregiver. So.
Brandy Archie, OTD, OTR/L, CLIPP
Yeah. And leading into what you were saying, like, I think you're both saying two different things, but they definitely overlap. So like, because while you're saying like, the system is currently set up, that we need to go to the physician and the physician needs to have more time to be able to dole out more of the stuff because they are, I would argue, not the center of the circle, but the top of the pyramid. And then everything has to flow down from them. And so you're saying, hey, if you're going to be the leader and the
Emilia Bourland, OTR, ECHM, CFPS
Mm.
Brandy Archie, OTD, OTR/L, CLIPP
person in charge of all this stuff, which is actually well more than you could probably manage to be a social worker and to be occupational therapists and to be able to like have all these resources and be like, you need this and this and this. You need more time to deal with that. That's fair. But I don't know that that's actually possible in the way that our payment system is set up. You know, there's no, there are new codes that have come in some ways, but there's not as much available. And so my question is,
Consuela Marshall, OT/L, CAPS, CDP, CGCP
way.
Brandy Archie, OTD, OTR/L, CLIPP (20:02.83)
short of the changes in legislation to have direct access to OT, for example, how do you feel about or have you seen any things, pros or cons, about the senior care primary care establishments that have been set up all over the country where they highlight, the physicians have fewer patients, they only work with older adults, they often have a...
social worker or some kind of community access person available, like the center wells and the arch wells. And I'm sure there's plenty more that exists in different parts of the country, but like they're set up to do kind of what you're saying, Consuelo. Have you worked with very many? I want to hear how you feel about that model. Any insights?
Consuela Marshall, OT/L, CAPS, CDP, CGCP
I'm really not familiar with the model, but I do see the buildings. I see them coming up, several new buildings around town, and it has piqued my interest, and I've done a little research on them, but not really understanding the full model of what they do. But it could be that step that's needed. And just answering your question, I don't feel like more needs to be dumped on the position.
But I do think that at the ground level of somebody needs to, the caregiver needs to have access to something. They need to have access to resources. So maybe I can retract a little bit saying, maybe I'm not saying it all falls on the physician, but for that moment that you can get their ear, they need to be compensated for time when there seems to be that there's more under the surface that needs to be discussed.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Emilia Bourland, OTR, ECHM, CFPS
Mm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
for this patient, so let me take this a lot of time to sort of see, do I, let me take this a lot of time to make the referrals. Let me, I'm listening and I'm clicking the buttons and I'm getting, I'm making some connections so that when they leave my office, it's not that I see them again in three months and nothing has been done. So I think there needs to be something crafted in the way of, yes, allow for the physicians.
Emilia Bourland, OTR, ECHM, CFPS
Mm -hmm.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
an opportunity to have those times. And maybe these centers are going to sort of bridge some of that gap. If indeed the model will be that the physicians are gonna be there to listen and more time for the, maybe that's that added piece for family caregivers or for those individuals who need that more one -on -one attention that.
can't be provided by a physician that has a whole waiting room. And I do know that their reimbursement levels are not what they probably used to be. And the volume that they have to see in competing in the healthcare system, being realistically realistic, it has something needs to change. But I think going back to the very root of my initial spur, my answer is, what is a resource that caregivers need?
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
They need an ear. They need someone who's gonna listen. So maybe it's not all the physician, direct access is a part of it. And what you've just brought up is making me think, maybe that's something I can, I'm gonna pay more attention to, but to be honest, Brandy, although that I'm seeing the buildings and I've seen the commercials that are starting to play, but I really hadn't really thought real deeply about the role and really the benefits of having them in the community.
Brandy Archie, OTD, OTR/L, CLIPP
Mmm.
Emilia Bourland, OTR, ECHM, CFPS
Mm.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
I hope they're gonna be great for us.
Emilia Bourland, OTR, ECHM, CFPS
So shifting, shifting text just a little bit here. One of the things that I really love about everything that you do, Consuela, is I've noticed that a lot of your messages, a lot of your content, it revolves around this idea of shifting the narrative of being a caregiver and shifting the perspective of that. Can you talk a little bit about where you're coming from and tell us about that?
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes, you know, finding a foothold. That's the heart of what I do. Finding a foothold is the consulting agency that I founded geared on helping caregivers and aging older adults in that season of life. So it entails a lot of things on the aspect of that are geared toward that aging older adult, but also in the caregiver frame. I do.
I think there needs to be so much of a mind shift change in how caregivers view caregiving and their role and what that should entail in their role, in their roles. So in finding a foothold, that is just finding your way of doing caregiving that is specific to you and for your needs in the current season of your life.
for many of us as caregivers and me included because I care for my mom and I started on the wrong trail and had to really make some pivots that took a little bit longer than I thought before I pivoted because I was headed down the wrong road like many caregivers are doing in that we take on the role of caregiving with such a narrow perspective. Yes, there is a Webster definition of what caregiving means.
but we have to take that into the context of our life. What are we on this, put on this earth to do and what are our current responsibilities? And we have to look at the need levels of the one you're caring for and see how you can bring those two things together. What are the limits and what are your limits in your life? And there is often a gap in between what their needs are and what your capabilities are. And how do you feel that...
gap. What are the things that you need to do as a caregiver so that you don't lose your life, you don't lose your sanity, your health, your relationships, and other things that make you important. So I like to emphasize that we all must craft the definition of caregiving that is specific for our life by first identifying and knowing who we are.
Brandy Archie, OTD, OTR/L, CLIPP (26:02.35)
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
And sometimes we will lose that in the beginning because, you know, we run into that burning fire of caring for your loved one because they is urgent. They've had the surgery, had the diagnosis or whatever. And we can put everything on the background because our heart is not going to be able to look at all of that because we are needed right here. But when this is going to be a long burning fire, it's not, it's going to be there for a while. Then we have to go into a survival mode. We're not going to fix this.
Emilia Bourland, OTR, ECHM, CFPS
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
how can we make this manageable? What can we do so that we are not slowly dropping off things out of our life because their needs are getting greater and we're not there for our children, not there for our husband, not looking at other opportunities that should be brought into the picture of caregiving to help fill those gaps so that at the end of your caregiving journey, you're not left this empty person, this person that was
just so driven by what dad wanted, what mom wanted, and you weren't able to have those hard conversations about you also still have a life. And in the same way things are different for you in your life, you have to talk to your loved one about things are gonna be different in their life too. You cannot keep all things stacked up the way they had them stacked when they were orchestrating things in their life. The days that they...
Brandy Archie, OTD, OTR/L, CLIPP
Mmm.
Emilia Bourland, OTR, ECHM, CFPS
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
is and they did it this way but now you're there and you're trying to keep all the cards stacked up in the same way. It's not possible and you're going to find that that person that you were and so happy to be able to serve your mom, your dad, you may still have that under your heart somewhere because you're still showing up but what you're demonstrating and what you're living out and what other people are seeing in the changes in your life and your personality and your health are changed.
And we're often the last person to see it because we're so focused on their needs that we don't see how we're putting things that are also important in our life so much further on the back burner that some of those things won't be able to be retrieved at the end of the caregiving journey. So yeah.
Emilia Bourland, OTR, ECHM, CFPS
Yeah.
Brandy Archie, OTD, OTR/L, CLIPP
I think you said so many important points. The thing that stands out to me the most is you said that you were headed down a wrong pathway and in caring for your own mom. And I'm assuming that when you were doing that, you are already in OT and had had experience working with other caregivers.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Mm -hmm. Yes.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes, yes, this was not too long ago. I mean, yes. Now, my mom has been passed away for several years now. But as an OT and going into homes, I had on the lens of really helping the patient and doing caregiver training. They come together as OTs. You can't just look at one, not do the other. So in doing that, the mechanics of, okay, this situation in this home is not set up. We've got to do some changes here.
Emilia Bourland, OTR, ECHM, CFPS
Yeah.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
This dresser, I know she loves it. She had it since she was married, but it's in the wrong place, you know, and really telling them this has to leave, we have to do this and the modifications and the training on the technique, we do that as OTs and I did it for years. But when it was my mom.
And I would tell caregivers that and they would be like, yeah, then I'll come back the next week. It hadn't been moved. Mom don't want to move it. And then all these things you just see, and I'm discharging them. And I'm like, I've told you all I know. It's now time for you to do it. And not really understanding what makes a person not do the very thing that's going to keep them healthy and keeping them involved in the care. Until it was my mom, you know, and that emotional part.
Brandy Archie, OTD, OTR/L, CLIPP (30:06.99)
Mm -hmm. Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
that just overrides sanity sometimes. As an OT, I knew there were certain things I was doing too much of. And then there were certain things that just went over my head because I couldn't even think. I mean, that doesn't apply to us. This is my mama. That kind of thing, that kind of mentality that had crept in until while I knew the mechanics of OT, I knew body transfers. I knew setting up the, I made modifications to accommodate her need when she came into.
Brandy Archie, OTD, OTR/L, CLIPP
Mmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
live with me and my family did all of those things, but I was doing so much because she wanted things done at a certain time and in a certain way and just the frequency of the transfers and the frequency of doing this. And I was doing all of the things the right way, but I was doing too much of it. And I was not always there. And I was, didn't have the patience for the homework and for, and then not getting out of the structure of.
Emilia Bourland, OTR, ECHM, CFPS
Mm -hmm.
Brandy Archie, OTD, OTR/L, CLIPP
Mmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
okay boys, are your things in the book sack or this and this and this, you know, all of the things that made me function in my household run smoother, smoothly. They were just thrown out of the window because I was trying to please and keep this routine that she had in her home. So that was a mistake I made until I just really saw that my house wasn't the same. I, you know, just the cadence of getting up.
Brandy Archie, OTD, OTR/L, CLIPP (31:34.67)
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
going to work, getting kids to school, dropping them off. Everything was thrown off because I was moving more to her rhythm instead of taking both sides. Not taking away everything that made her her, but I'll just saying, look, I have to have this this way because we, I'm flying through the light because I'm trying to get to the school. Cause if I don't drop them off, I gotta get out of that car.
Emilia Bourland, OTR, ECHM, CFPS
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
drop, walk them into it because you got to sign them in if you don't drop them off. And I'm like, I'm not getting out because I'm half dressed and I'm late, you know, and I'm doing all of this, you know, so I'm like, I was always on the rush, always doing these things and making poor choices because I was trying to say in a cadence that she was orchestrating. And one of the things was that she loved morning baths. Why I thought I can put a morning bath in the middle of
Brandy Archie, OTD, OTR/L, CLIPP
Sign them in.
Emilia Bourland, OTR, ECHM, CFPS
Hahaha!
Consuela Marshall, OT/L, CAPS, CDP, CGCP
already chaos with, did you put your PE uniform? Where are your shoes? You know, it was already chaotic getting out of the house. And then I'm gonna throw in a morning bath. You know, it was those kinds of things that I had to say, you know what? These morning baths are no longer happening because I can't. And having those hard conversations and getting the silent treatment and the pouting and you know, and I know she's mad at me, but I am not.
Brandy Archie, OTD, OTR/L, CLIPP
Mmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
We're just not going to do it, you know, and really setting these ground rules that you're looking at what's essential and what is just a habit and a custom that she was used to and really having to make those changes. So we're branded up. That's one example. I really use a lot in my group coaching that don't overthink this, you know, look at your life and look at where are you running off the track at? And you'll really see it's easy to get back on track.
Emilia Bourland, OTR, ECHM, CFPS
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
But you have to make hard decisions. And the hardest ones are when you've got to go against the one you're caring for. And then, of course, and not wanting to do what other people think you should be doing. You just got to turn all that noise off and do what's right for you in supporting what are the true needs of the one that you're caring for.
Emilia Bourland, OTR, ECHM, CFPS (33:43.48)
Hmm.
Emilia Bourland, OTR, ECHM, CFPS
So there's two things that really, okay, one thing that super jumped out at me about what you were talking about, and then I have a question for both of you actually to piggyback back off of that. One is that I think that you really highlighted here the fact that when we bend over backwards to meet anyone else's needs, it doesn't matter what the relationship is, right?
when we are only thinking about someone else's needs and not our own, and we don't have a relationship that is built on mutual compromise and respect, that's what we would call a toxic relationship, right? That's not good no matter who, if you were married to someone and it was all one sided, that probably wouldn't be a very good marriage. If you were best friends with someone and it was all one sided, it probably wouldn't be a very good friendship. You're basically taking that and saying like, hey, this is no different.
for the person that you're caring for. This is a relationship. It's an important relationship, but there has to be compromise mutually and mutual respect here. Otherwise, like, it's not a healthy relationship truly for anyone. And then the question that I have for you guys is, and I think this is kind of a difficult question to really know the answer to because historically most caregivers
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Emilia Bourland, OTR, ECHM, CFPS
are women. And that, of course, I don't want to discount from the male caregivers that are out there. I know that there are there are men out there who are the primary caregivers in their situations and their families. And, you know, hats off. And I mean, it's not an easier it's not an easier job for a man than it is for a woman. It's I think it's a hard job no matter who you are. But but historically, most caregivers have been women because that's the role.
that women have been placed in. And at the same, I have a point, at the same time, women are also taught, like we're brought up largely, at least in this culture, to be people pleasers. We are brought up to set aside what we need and make sure that everyone else is okay. And I feel like that's part of what,
what happens sometimes in these caregiving relationships that become so one -sided. Because if you have someone who, and it could be any gender, of course, but if you have someone who's taught that your job is to really put yourself aside and make everyone else happy, then you put that into a caregiving relationship where someone is sick or unwell, and that is like on steroids. And so I wonder, do you think that if,
Well, in your experience, when you've worked with caregivers who were men, did you see them have those same kinds of boundary issues that and like compromise, lack of compromise that you that we kind of are talking about here? Did you see that same thing occurring with with men who were caregivers? If you, you know, if you even have a big enough sample size for that?
Consuela Marshall, OT/L, CAPS, CDP, CGCP
not a big enough sample. Yes, I don't know because there are some that jumping into it all. When I say all, I mean, a LL every ADL they do it into it. Well, even with a son who's caring for a mom, I've seen it. And. But I would say just in the short responses, I don't think they have the.
Emilia Bourland, OTR, ECHM, CFPS
Sorry, that was a long question.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Because the duties are often so different, I don't get to see the ones that are directly involved in the hands -on care. So where they may not be able to put limits on things, it may not have been something that I had privilege to see, but I would expect they may be better at the limits than us as women for the most part.
Brandy Archie, OTD, OTR/L, CLIPP
I have a really good example of this. And I worked with a family who the son was caring for his probably 80 something year old mother. And he was doing literally, he was willing to do all the things, but he drew a specific boundary in that he did not want to give her a shower. And not that he wasn't willing, he knew that she needed to be bathed and she needed his help. She needed some help. But he felt strongly that...
he was her son and she should have the dignity of not having her son wash her. And you know that in like you could look at it two ways and say like that's super selfish of you. You don't want to help your mom do the thing that maybe she doesn't want a stranger doing. She'd rather you do. But I also just the way that he said it made me feel like, this is like the most caring thing he feels like he could do because he not only wanted to maintain this.
essentially illusion because he's helping her with totally other stuff, but just maintain this boundary of like, this is a space for you and another woman or somebody else. And this is not a space for me and you, but I care deeply about you. I'm going to make sure that this problem does get solved though. It wasn't just like, we just don't deal with it. He dealt with it. And I feel like that stood out to me because I think plenty of other people feel similarly, but they don't like take the initiative to say like,
I'm not gonna just play around this area and just kind of half do it because I don't want to do it or I feel these feelings about it. I'm gonna literally put a system in place that allows us to respect these boundaries. And so I thought that was super strong. And I don't know that I've seen very many women take that kind of stance, even if they had that feeling in their heart. Does that make sense?
Emilia Bourland, OTR, ECHM, CFPS (39:58.68)
Mm -hmm.
Emilia Bourland, OTR, ECHM, CFPS
Yeah, I feel like that pretty closely aligns with my experience as well in working with male family caregivers versus female family caregivers. And it really partly is maybe a difference in expectation too, right? It's just expected, I think a lot of times, that the daughter, a lot of times it's the oldest daughter, is expected to just go in and be comfortable with all of those things. And I think whether you're a man or a woman, it's reasonable.
to maybe not be comfortable with all of those levels of care. But I think maybe sometimes it's a little bit easier for men to speak up about having that discomfort versus a woman. And again, I say that knowing that obviously that can't reflect everyone's experience. I'm sure that there are men out there who are also doing lots of, they're engaging in care and they feel like they don't have a choice and they're gonna go ahead and do it all.
And the experience can be different depending on the individual. But I think as a trend, I feel like that's what I've seen.
Brandy Archie, OTD, OTR/L, CLIPP
So I have, my question is, when you think back Consuela to when you made the connection that like, hey, I'm upholding my mom's routine in a way that's unsustainable for the way our routines work here, and I'm still gonna care for her, but we need to maybe have a conversation about this. And you alluded to some silent treatment and some negative responses from that. Can you give us a little bit more, I want to take, I kinda just wanna understand you at that moment.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes.
Brandy Archie, OTD, OTR/L, CLIPP (41:41.07)
and how you could deal with that communication issue. What were some actionable steps? Because so many people are avoiding having this conversation because they don't want to deal with whatever the outcome is. And it just would be great to hear you say how you did go through that, initiating it and then also dealing with the after effects of it and then moving on from it too.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes, it's always hard when you have to say no to a family.
Are you able to hear me? Emily? Okay. It's always hard when you have to do it the first time, because all of these feelings about this is disrespectful. She's done so much for me. All of these things, and like, if I don't do this, then I'm not being the good daughter. But when you have to weigh it against what are the things you're losing? What are the...
Emilia Bourland, OTR, ECHM, CFPS (42:11.)
Mm -hmm, you're good.
Brandy Archie, OTD, OTR/L, CLIPP (42:23.47)
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
and your overall well -being is for me, I just had to rehearse the conversations with myself first and telling myself you got to stay respectful, but you've got to be firm and you really got to say the reasons of the why. Like, you know, even put myself like, if this was me, what would make me understand a little bit better? If I knew why, then I could be okay a little bit with it. So really in just saying, you know what, it's too, it's just too much to...
Brandy Archie, OTD, OTR/L, CLIPP
Hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
you know, like tipping around, toe -tipping around the subject when I know my whole, I felt like my whole house was on fire, but then I just wanted to like just tiptoe around her. It's just like really having the hard conversations. And once you've had one, it's like, it takes the pressure off. It takes that insecurity, that feeling that you have in that you're standing up to this person. It's something that takes that stress away.
so for me, and when I'm explaining to people that you've got to really research this yourself and you've got to really have these conversations outside of the situation. Don't wait till this morning she's got, she's picking, she's packing her stuff and headed to the bathroom. You know, I'm like, that wasn't the time to do it. It's like having a conversation and really even saying, this is a hard conversation because I know this is something.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
X, Y, and Z. But these are some things that I need to talk about because these are the fallouts that have been occurring because of this. So having those conversations and really going back, I know, I think for a while I was just so mad, like she is so inconsiderate, she doesn't care about anybody for herself. All of these feelings come. But in the heart of the matter, I did see my mom understand when I said,
I am tired of running out of this house. I can't find my keys. I'm disorganized. I'm running red lights. I'm flying across the school parking lot about to hit a child. I'm just like going through all of these scenarios, just really trying to tell her things are out of hand. I cannot. Once she got over that and we have to come back with a compromise, okay, mom, we're gonna do it at night. Or if you wanna get up at five in the morning,
Brandy Archie, OTD, OTR/L, CLIPP (44:43.15)
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
I'll do it then, or you know, just trying to come to some kind of agreement that there's one way to fry this thing. There's one way to get this thing done that it doesn't have to always be a hard no. Some things will be a hard no. And there came some times when I was talking about, we're not doing that ever again. I almost killed myself, killed you. That ain't gonna happen again. There are some things you're gonna put a big X on because they are just not conducive to anybody's health.
But there are a lot of things that can be compromised. And if you have that parent that just don't want to do it, then you know what? With time, they can come around. But if not, it just has to be, you have to stand your ground and say, the relationship with my husband is a lot meaningful. I need him along. I need him to stay. I need to be able to do things with my kids. I don't get these years back. I don't want all of their years of that, my, you fussed it up so much. I mean, yeah, those things will happen.
Emilia Bourland, OTR, ECHM, CFPS
Mm -hmm.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
if you don't start to put things in order and have those hard tough conversations with them and getting their input, if you get their input, even if you go to the extreme and go give two things to the far extreme that you know they're not going to go with either one of them, they will often come up with something in the middle that they will agree to that can help move things more toward the middle of something working out for the good.
Brandy Archie, OTD, OTR/L, CLIPP
Mm -hmm.
Emilia Bourland, OTR, ECHM, CFPS
Well, Consuela, you are so wonderful. I just, I can't tell you how happy we are that you've been on CareLab today. But before we go, would you share with everyone where they can find you? Because you have such wonderful information and content out there, and you're such a fabulous resource yourself. Where can people find you?
Consuela Marshall, OT/L, CAPS, CDP, CGCP
The hub is findingthepoothole .com. It's the place where you start and you'll learn about, I do have a podcast as well. I'm not as active on it and I try to get one out once a month and one should be releasing soon. But starting there, you'll find out a little bit about me, about a podcast on a blog that I do. And I have two types of group coaching programs. One geared for that aging older adult and really focused on aging in place.
how to keep them safe in their home and not needing to go live with sister, live with daughter or daughter come live with you, keeping them safe and then why for the caregiver? On setting boundaries and really staying in touch with the important aspects of who you are during your caregiving season and really you choosing what to put on the back burner because you can't do it all. When you accept the role of caregiving, something leaves the plate for her.
a season, but as a caregiver, you get to decide what those things are by making the choices that you need to make for your life. So the group coaching programs are listed on the website and any information about all of my social media platforms, they're all finding a foothold. So if you are to find a foothold across the platforms, you'll find me or just going back to the website, there are links to all the social media platforms.
Brandy Archie, OTD, OTR/L, CLIPP
Kusula, I appreciate you coming on so much. And I really hope that, because I gained a lot of information from this, that people will understand, like, you know, you coming from not only a professional, but a person who also has been a family caregiver, who has all of this knowledge already as professionals, still had struggles with it, and still had to, like, redirect. And just, like, that gives license to everybody to understand that they can make those mistakes, too, and then maybe learn from our own other mistakes.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
Yes. Yes.
yeah.
Brandy Archie, OTD, OTR/L, CLIPP
And so that you don't have to make them yourself, but just like, it gives a sense of hope to know that like, you're not doing any of this alone. You're the only one who's had this problem. And even professionals have to take a second look and like set their boundaries and consider it differently. So thank you so much for sharing with us.
Consuela Marshall, OT/L, CAPS, CDP, CGCP
yeah?
Consuela Marshall, OT/L, CAPS, CDP, CGCP
very welcome. Glad to be here.
Emilia Bourland, OTR, ECHM, CFPS
Yeah, thank you again for being here. Thank you listeners for listening or listening to or watching this episode of Care Lab. If you enjoyed this episode, please make sure you take a second to click that little subscribe button. Make sure that you're sharing it too with anyone that you think might benefit from this information. And we will see you next time on Care Lab. Bye.
Brandy Archie, OTD, OTR/L, CLIPP
Killa!
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