In part two of Genia Stephen’s special interview series with storyteller Katie Bachmeyer, Katie asks Genia, who has been acting as medical safeguard for her sister for months, about what it’s been like to live full-time in a hospital. Genia notes that a hospital setting is a service, and that some aspects of systems in place in services are designed primarily to protect and empower service providers, not people receiving the service. While these guidelines are important to enable medical staff do their jobs well, they don’t always take into account that, particularly for people seeking long-term inpatient care, the place of service becomes the patient’s temporary home, and the patient gets no respite from the system. Patients’ needs become subservient to the needs of the service that only exists in the first place because the patient needs it. If you’ve missed the last two episodes, you may want to listen to those first. Stay tuned for Part 3 of this special “My talk therapy” series—coming soon!
Welcome toThe Good Things In Life podcast. I'm Genia Stephen today's podcast episode is another conversation with my friend, Katie Bachmeyer. Katie is a storyteller and owns a small storytelling business in Cincinnati, Ohio called Bachmeyer Press.
And Katie is
One of a few of the people in my community who are helping me to tell my story, who are helping me to continue providing value through good things in life. While my sister is living in intensive care, I'm providing quite a bit of her support, as I mentioned in the last episode or a couple of episodes ago in conversation with my friend, Marilyn Dulmage, who's an Inclusive Education Consultant. She was saying, you know, part of what you do in Good Things In Life is to build community. And don't forget that you have one while you're going through this difficult time and don't, uh, has teacher reach out. So I have, and Katie is one of the people who has answered my request for help. So we're going to be talking more about medical safeguarding. The last couple of episodes have covered the same topic. And so if you haven't heard those, I'd encourage you to go back and check them out, starting with episode
99, Katie. Thanks so
Much for your continued support. I really appreciate it. And I'm just going to hand it over to you, let you lead this conversation again.
Absolutely. Genia and I think your experience right now, the willingness that you have to share it is a humbling experience, and I'm just really grateful that you're willing to offer your insights as you go through this. And I think who better to teach a course on medical safeguarding than somebody who's actually lived it. You said this isn't your first rodeo. Um, so there's, there's a wealth of knowledge that I'm just learning a lot from you. So, yeah. And I, and I'm wondering if you could start us off by just saying, you know, who do you want to hear this? Who do you think needs to hear these episodes on medical safeguarding?
I think anybody who, I mean, I hope I hope they're valuable, right? That's the first thing is that I hope that I hope they're helpful. But assuming that they're helpful, the people that I would hope would hear that would be anybody who cares about somebody who is vulnerable and specifically vulnerable because they have some aspect of themselves that is not highly valued in our society. For example, people with disabilities or elders who might be vulnerable in the healthcare system, because they have difficulty communicating with others or being understood by others who perhaps have really complex histories and stories to tell that they might need some assistance. And telling who might need some support in order to make decisions and be actively involved in their healthcare, provides consent or make decisions about what they want. And certainly, you know, there's many other aspects to vulnerability. But I would say that, you know, medical safeguarding, while it's relevant to anybody in the hospital, I would particularly hope that people who care about somebody who's vulnerable, wouldn't listen to these episodes.
Yeah. And in a previous episode, I asked you to share who are you to your sister? What do you think she would say? And I was wondering if you could say now, who is your sister to you? What are some of the memories that come up when you think of your sister? Who is she to you in your life?
Yeah, so Kate and I, so we have, we have older sisters, but because of sort of blended family dynamics when Kate and I were really little, it was, you know, the two of us. And so we have always been, we, you know, we have always had a good relationship. And when we were little, you know, when, when, um, I was about three and a half when she was born and apparently I talked about Kate as my baby, you know, and that was, I think, how I felt about her. And then as we got older, I think, you know, we just had a very, in lots of ways, a really typical sister relationship, you know, Kate used to stand at the threshold of my bedroom with her toes, right on the edge. And, you know, I'd be like, get out of my room and she would be like, I'm not in your room.
And, you know, like just, um, she always wanted to take along and, um, you know, oftentimes I didn't want her to, and, uh, when we got older, we moved out of our parents' home and shared an apartment together for a few years. And then things changed with the, you know, when I had kids and we do have other sisters who also have, you know, very close relationships with Kate. And one of our sisters has provided over the last many years, a lot more of kids support. And so we've been as, as all sisters sort of intertwined in each other's lives. But I think, you know, again, like most sisters, there's an element of connection that stays kind of steady throughout your life and your relationship. And, you know, Kate is, we joke around a lot about, especially in the hospital, cause people are always around us about, you know, not, not telling each other secrets and not telling embarrassing facts and stories about each other, to the people who are around us these days. And, you know, the, your sisters are always the, well maybe siblings and cousins or whatever, but the people who have known you best and longest and, um, really kind of form part of your identity.
Yeah. And I, all of this resonates being the youngest of five and, uh, being the little sister myself. And so I think there's some patterns that play out in sibling dynamics. Do you think that the old plat patterns are playing out even now, you know, as you go through this medical crisis together, are there some of those old patterns you, I think you kind of touched on that, but what would those look like in the hospital setting as being older sister, younger sister?
I don't know. I don't, I don't know. Katie I'd have to think about that. I'm not sure how to answer that question. I mean, the, the nature of being Kate in intensive care, you know, and has been for the last four months and she is in the recovery stage, but the nature of being in a situation that requires intensive care Sur means that you're compromised. You know? So I feel like often, yeah, that changes the dynamic of the relationship, you know, and the other thing that changes the nature of the relationship is living on display. So, you know, I, um, I Googled a couple of weeks ago, do zoo animals require antidepressant treatments and it turns out that yes they do. Um, and, um, that's kinda how I feel, you know, like the Kate and I are living under, uh, on observation, constant observation outside of our natural habitats.
And, and it affects our behavior and our relationship. I don't, I don't mean it affects our relationship in some like fundamental shattering way or anything, but our interaction. Like how we relate to each other, strips away some possibilities for how we might, you know, support each other through this, because it's not appropriate in public. Like it's not untoward. It's just like, there's only, there's certain ways that you act in the privacy of your own home, like teasing each other or telling those stories or remembering, you know, remembering those embarrassing stories and or things like swearing, just like, you're not gonna, you know, you're not going to have that, that, um, unfettered relating to each other and interaction.
Yeah. And that, that's a confinement that you named. That's a feeling of confinement in the physical sense, but then even in the relationship sense that you guys are a little confined right now and how you can be there and show up for each other, which is really interesting and
Informative all of the time. Yeah.
Is that, it sounds exhausting to me is that
It is, it is exhausting to me. It's exhausting to me on a few levels. One just the I'm like, you're never not on. Right. So when we go out into the world, we, we expect that we're going to be somewhat performative. Even if we're performing ourselves, like we're, we're being true and authentic to ourselves, but we're still being a version of ourselves. But then we go home and we get to be with people in our home if we live with other people. And then, you know, there's a certain, maybe not everybody listening to this, but I walk in the first thing I do after I take off my shoes and coat is take off my bra and change into my pajamas. Right? Like there's a certain sort of like taking off the trappings of being out in the world and being able to let it all hang out both in your personal presentation and also your behavior.
Not that we shouldn't be mindful of our behavior at home with our loved ones, but it's different. Right? So there's that aspect of it. And there's the constant or the feeling of being observed and managed all of the time. That is difficult. And there's also the, I mean, I like meeting new people and having interesting conversations with people, but actually what happens in the context of the intensive care unit? I talked about the fact that there's more than 200 nurses. There's actually, I think closer to 250, if I understand correctly in this intensive care unit. There are personal care assistance, dozens of personal care assistance as well. So we're talking about, you know, hundreds of people. And so every day I said, as we were talking before, um, in another episode I was talking about, it's like Groundhog Day, like every day you wake up and you start the day and you are usually meeting and trying to build a relationship with a new person. So it's like trying to make a new friend with all that, all the awkwardness that comes from from that all the time. And then that person goes on break, and then it's probably somebody else you don't know. And so the etiquette, the, just even maintaining the etiquette of hi, I'm Genia. Yeah. I'm Kate's sister. This is Kate. How are you? Have a nice day. Thank you so much. And then adding the medical advocacy piece on top of just even maintaining that level of public advocate all the time, I'm finding it exhausting.
Yeah. And you and I had talked a little bit before about what it feels like to live in a hospital, which is essentially, uh, a system to live in a service. And the benefit that you have right now in this setting is that you do have a home to go home to. And Kate eventually also has a home to go home to, and there will be in the future, a break from this. Um, not even just a break, but a, you know, a farewell by end to it. Can you talk more about that sentiment and what you were alluding to in terms of, you know, living within a service we're living within a system where it's not your roof, it's not your rules. And when that is, when that is your home, actually, when that, when that service, isn't just a place that you visit to get better, but it is actually your home. It's where you live.
Yeah. Yeah. I mean, there's a few things that I think about. I mean, Kate is coping has been coping very well, very, very well. I don't know how she's doing it, but she's been managing really well. I'm going out of my mind. And so certainly I think previous experiences, character, resilience, resilience, all these things contribute to your experience, but it's been really, again, you mentioned, this is not my first rodeo. I've done this job of being a continuous bedside advocate for my son for months at a time, Kate, for weeks to a couple of months at a time friends, you know, other people in the community. So it's not the first time I've done this. I don't know what, I don't know what it is. Maybe I was having the exact same thoughts and feelings when I've been in this situation for as long in the past and, and just not drawing to mind because I'm in the stick of it right now.
But I find I'm finding it really interesting to watch what happens to me in this, and then to think about how I would be impacted and how I would change over time if this, if there was no farewell to this reality. So for example, I stopped noticing very often when etiquette slips. So typically I'm a generally polite person, you know, hello, how are you? You know, I'm somewhat socially awkward. Sometimes, sometimes I'd, you know, rather, you know, cross the road to avoid having a conversation if I'm feeling tired or antisocial. But generally I know my manners, you know, and I use them, but I've noticed there's been a number of times in the last little while that people have said, hi, who are you? And they've been in the room for a considerable amount of time. And I haven't even noticed, you know, and I think, wow, like how would that change the way I was perceived over time, if I became so worn down to having strangers that it just became so much to keep introducing yourself over and over again, that you just sort of start not feeling like it's a priority anymore.
And then how do people perceive you? And then based on how people perceive you, then how do they treat you and what kind of opportunities do they provide and what kind of services do they, or interventions do they recommend? So, and that's manners, nevermind my irritability, which is significant.
And, uh, well earned. I think, I think B
Sure, but this is that's exactly my point is I, I I'm, I am pretty resilient and even an overfunctioner at times, and this isn't, I'm not adjusting to this for the first time. I'm well aware of the issues and the stressors I'm sympathetic to the staff. I'm a, I'm a health care provider myself. I like
As a midwife. Yeah. Yeah. Like
These are all, so, and I am really feeling the strain of this. Right. So, yeah. And yeah, I think the irritability is to be expected from anybody.
Absolutely. And I think, you know, to, to put it back into the context of the time, the length of time, you said, this is, you know, you've, you've had this play out before weeks at a time. Maybe not four months straight like this in the COVID world where you are the sole person Monday through Friday showing up, and then how that accumulates versus, I know what this is. I'm familiar with the setting for all these reasons, but the accumulation over time. Can you talk more about what that is and in terms of how you're feeling and how Kate is feeling?
I think Kate, maybe this is, so Kate has not said this, this is me imagining what Kate is thinking and feeling about this because she's not been able to express this to me. And I think Kate has been holding on, okay, this is my new reality, which has happened to her a number of times in her life, you know, something changes dramatically with her health or her body or her life circumstances because of things that have nothing to do with her, you know? And so like, okay, so this is my new reality. This is okay. These are the reasons it's okay. And you know, I, I'm not, I honestly, as I said, I'm not sure how she's managed to be so incredibly positive through this, but then I think she's just sort of like around the same time I have just kind of hit a wall and now she's struggling now.
She's like, okay, I'm done with this. I'm done with being okay with this. And I want to go home, get me out of here. So, and I'm kind of feeling the same way, but I accept that I've had more points of hitting a wall. Then Kate has like throughout the whole experience, I've, she's definitely been more resilient than I have through this. And the accumulation means that, you know, I'm shorter tempered, I'm missing things. You know, like things that I typically would catch up on, I'm not, I'm less competent because the strain is just sort of, you know, wearing me down. I feel emotionally, uh, I have all kinds of, you know, I'm feeling all the feelings, but I'm trying to figure out how to express what I feel on guard all of the time. I was reading about when I was Googling, do zoo animals need antidepressants?
I was reading about a polar bear that was swimming, figure eights in its enclosure over and over and over and over and over. It had developed this maladaptive coping mechanism and they were talking about, you know, polar bears are apex predators. They need to hunt. And they hunt over massive areas of land. And you know, this is, this is, and, and then you take those things away and the result is a neurotic bear, you know, and I'm like, I can totally relate, you know. The, all the, all the typical kinds of freedoms and, um, aspects of your, of yourself that you're able to embed in your life and, um, express and, and grow into are not allowed within the context of living and existing in somebody else's space. So, and it changes every time there's a staff change. So, you know, for one nurse, it's fine.
If, when Katie wants to, we brush her teeth, another nurse comes in and says, I get some more swabs that Kate uses for this mouth wash that she needs to use. Anyway. It's like, it doesn't really matter. It's a mess swabs. And the nurse comes in and says, you must notify me when you're going to touch the supply Corps cart. And you were talking about like, it's not like I was dipping into the narcotics, you know, drawer, right. This is the, this is the supply cart that has things like most swabs and, you know, Q-tips and claws. And, you know, so it's just, uh, you know, navigating this sort of suppression of your, yourself and your autonomy and kind of who you are to the vagaries of who happens to be there. And within a context of living in a service where the service providers feel like they own the service provider, or they own the service, excuse me. And they provide the service and you should be grateful for it. And we are, but feel no, like it's the, you know, things like, well, the rules that are in place to protect the service and the service provider, but not the person receiving the service. Right. And people feel very justified about all the rules that serve the service and the service providers, but not the service recipients.
Is it the whole person to go back to what we had talked to in a previous episode right before this is it, is it that they're not serving the whole person they're serving the medical crisis and not,
I don't think so. I think this is pervasive across, this is a nature of service. And the more complex and formalized the service and the service system, the more like this it is. So you can look at things like, well, you can look at residential services for people with disabilities or elders. You can look at, let's look at churches. For example, you can look at school systems. You can look at like name a system, basically name a system. So the more formalized and complex the system, then the more the system somewhat by necessity and somewhat just by the nature of the beast creates rules that serve maintaining the system and the people who work in them, even if those rules are in conflict with what's in the best interest of the service recipient. And this is true, regardless of the quality of the service.
I'm thinking right now about John McKnight and his work in an asset based community development and his, the story that he shares around when he had heart trouble, you know. That he was very grateful that he had a hospital to go to and they specialized and, and heart cardiac care and were able to save his life. And that also, the fact is that, um, the hospital needs John's broken heart, essentially, in order to exist, that they're set up to be, you know, deficit based care systems. Does, does John McKnight's work, play out in what you just spoke to?
Yeah, well, I think it's so, so John is pointing out accurately so that all human services depend on the perpetuation of need or the ongoing existence of need, because if you didn't have the need, you wouldn't require the service and the service system would be redundant. I think where that intersects with what I'm talking about is almost the irony of then how service recipients are treated. Right? So, you know, we have this amazing service, you know, we design the service, we're implementing the service, we're evaluating the quality of the service. We're determining what the rules are of the service. We can't exist and won't get paid unless you have the need for the service, but we're going to act like your perception of what that service should be and how it can best meet your needs is subservient to what we think you need and the way we want to provide it. And the rules that we think are important to serve the system and the service providers. So it's just sort of ironic dissonance there.
Yeah. You know, I was having this conversation with my husband who is a second year medical student right now. Um, he has his own journey of being a medical advocate, um, for his parents in the hospital over a decade and has gone from wanting to be a doctor to being extremely disgruntled with the medical system, to going back to this as his calling. And, um, I asked him to listen to your episode on, um,
The Hands of 200 People Will Touch You
The Hands of 200 People Will Touch You. And, um, you know, at the end of it, both of us said, man, we need to listen to that again, because it is so poetic Genia. But, um, you know, the question he was listening for in the lens that he has on right now is, um, what can we do? What can we do to fix this? What can we do to change as medical providers? And we, we kind of went woven and out of the conversation and he said, you know, well, there are, there are specialists. And I would probably, you know, I, if I, if I don't understand a person's disability, I would be able to refer them to a specialist, you know, and that is, that's what they're there to do. That's what they know, just like John McKnight's story of, you know, that cardiac specialist is extremely valuable to him when he needs his life to be saved.
And so in that regard, that is why doctors spend an extra amount of time learning about one specific part of the body or one specific disability. What have you. And it was that, uh, that frame of mind, I think is what he's in right now. It's, it's what he's learning. Right. But what I heard from that is, is this very medical response to a, how do we fix this problem? And I think, um, what I was able to share from my interaction with families of people with disabilities and other people with disabilities and advocates over the years, is that the moments that I've heard and people's stories where a doctor shook their world the most, wasn't the type of care that they provided. It wasn't the quality of their understanding of the medical condition that a person had sure they brought in specialists. They were able to help them think through, you know, what our next steps, but it was when the doors sort of shut.
And they were left maybe with one doctor who turned to them and on the side said, ignore everything you just heard from those specialists, you know, your son or daughter, or brother or sister, better than anybody else. And you are going to be the one to provide them the best life possible, a good life. And I think what I'm trying to get across here is that it seems to me, the mindset is what is really valuable, um, when it comes to systems of care. When your mindset is you are a valued person and you don't have to train a person to value a person with a disability, or you don't have to, you know, give them permission, not to just have low expectations of that person, but to perceive them in a way that is more typical, that, that, that mindset is actually more important than system change. It's mindset change.
So I w I wanna just go back for a second to what I was saying about, um, systems and systems having, you know, rules and, and other aspects of them that really serve perpetuation of the system and service providers rather than service recipients. And the fact that that's the nature of complex systems. And just, I meant to close that loop. Part of the answer to that is to not have people receiving services from complex service systems, when a human response would do. And if the complex system is required, like when you need intensive care to have a great deal of empathy and respect for the impact of complex systems on humans, uh, and just recognizing that it does have an impact. And that then leads into what I think that healthcare providers can do. It's funny that you say that in speaking with families, that's, you know, families to remember and were impacted by that don't listen to everything.
They just said. When my son was born, he was in critical condition and he had to be transferred from one hospital to another. And my husband went with him and I was unable to travel at that moment cause I just given birth. And they were at the, they were in transfer, and one of the physicians said to my husband in the next little while, and over your son's life, people are going to tell you an awful lot of things about him. Don't listen and then sent them off in an ambulance. And that in many ways, set a trajectory for my husband, you know, like it was the F it was the first message. It was a powerful message. And, uh, so anyway, I can just relate to that. So what can healthcare providers do? Certainly there are some systems level things that can change, you know, we can, we can have a better understanding of what the role of a medical advocate and medical safeguard safeguard are, is we can have better, more broad, broadly spread understanding and awareness of, you know, um, what disability modifications and accommodations, um, might look like in the role of the person.
Who's there to provide that guidance and support as a valuable member of the healthcare team. Those are sort of systems level things. I think that one of the things that medical professionals members of the healthcare team in general can do is one recognize the, and I think many people do. Recognize the impact of being a service recipient of healthcare on patients and on family members and in whatever way is possible, given whatever the purview is of that person. Try and ask if there's anything that can be done to make things a little bit easier. And I think also, I think, you know, we, we live in, um, quite litigious world right now, and I think that healthcare providers are reasonably nervous about their own liability. And that shows up in all kinds of different ways, but recognizing this is, uh, this is something that doesn't, um, doesn't actually impact your liability in any way.
In fact, it's protected, but sort of just being honest and transparent with yourself about what you do that is anti litigious, as opposed to actually in the patient's best interest, you know. And at least being honest so that you're not sort of defensive about the righteousness of it. And I shouldn't even say it that way, because I think healthcare providers have every reason to be worried and nervous about it, but at least recognizing that sometimes that has an impact on patient care. And I think in general, expanding into more broadly into what you were just saying about, you know, you, the family is going to be the likely be the people who support the patient to have to live a good life and broaden that, that that's really helpful as opposed to sometimes I feel like what we get is like, oh, of course, you know, that, you know her best. And really what that means is go ahead and fluffer pillows, because you know how she likes her pillows fluffed. Instead of you are an active member of the healthcare team who, you know, has information about the person then can help, you know, help with communication and facilitate communication and provide information. And might be in a position to help the person make decisions, you know, share that decision-making process.
I, yeah, I think that's really important to point out. I think that's a very clear way that the system can meet halfway almost and elevate the role of the medical safeguard, um, in the way that, you know, you're advocating. It should be.
Thanks so much for joining Katie and I for this continued conversation about medical safeguarding. Next week's episode is the final recording of our conversation. And we're still talking about medical safeguarding. If you're interested in learning about medical safeguarding, you can go to goodthingsinlife.org/join. If you're listening to this in March of 2021, and you'll have access to the training that I'm giving on medical safeguarding. As I'm recording this message, which is a couple of weeks after Katie and I recorded, my sister was transferred out of the ICU. So quite suddenly she made great gains and is doing much better, still requiring, um, care, but not requiring the intensive care unit and was transferred from the intensive care unit to our local hospital, um, for ongoing care. So things change quite suddenly. And now we will be starting all over again with a new hospital and new team. Was setting up expectations, understanding the role of a medical advocate and a communication partner. And we'll see how it goes. Thanks very much for listening. I hope that you are well and safe, and I look forward to joining you again here on the podcast next week, take care.
Special thanks to Katie Bachmeyer for joining me this week. Until next time!