Caregiver Shaming

Transcript: Caregiver Shaming (Episode 104) 

You’re listening to From One Caregiver to Another. I’m your host, Kay Coughlin. I’m a business coach and an advocate for people with family caregiver responsibilities. I’m a family caregiver for my mother, too, and I just don’t believe that we caregivers have to put ourselves last. I believe that our families, government, and society in general owe us a lot more help than we usually get. And I’m here to help you learn to speak up for yourself so you can live your own life again.

This is episode 104.

Before I dive into the topic today, I would like to remind you that I do publish full transcripts of every episode of the podcast. I do this to make my work more accessible because I believe in that, but I also do it because I know that a lot of people prefer to read rather than listen, and that’s just fine with me.

Of course, I think reading a transcript is not the same as listening. It can’t be because something that was written, like a well-crafted article, is meant to be read. But if you want to read those transcripts, I always put the link to those in the show notes.

Now I am talking today on the podcast about something that’s really hard and it’s not something that I hear people talking about. So let me just start today with a reminder.

Every family caregiving situation is way more complicated than you know. As someone once said to me, if you know one family caregiver, you know one family caregiver.

And I have to, I think, really talk first about my own story with caregiver shaming. And this happened to me when I first told my family and friends that my husband and I were going to be setting ourselves up to be caregivers eventually for my own mom and dad. And this was back in about 2010, 2011. So, you know, it’s been more than 10 years ago at this point.

What happened almost right away was that people started to make these assumptions about why we were choosing to live next door to my parents and what we were going to get out of that. And to me, it felt very much like they were shaming me in advance, putting shame on me just ahead of time just to get it out of the way. About the reasons that we made the choice that we did and, and we were being judged for that.

And a lot of people said to me things like, “Oh, I could never do that for my parents.” Or, “I really think that you’re going to be throwing away your future.” Or, “Obviously you’re doing this to get something out of it. What are you going to be getting out of it?”

And all of that was the really beginning of my own relationship with experiencing caregiver shaming.

So, what I started to see is that people immediately center themselves in the conversation when we talk about family caregiving. Those of us who have family caregiver responsibilities, or when we show up as caregivers in whatever family dynamics or situation that we’re in, what I see folks doing is I see them trying to work out their own guilt or maybe their own shame about their own relationships with family. Or their own thoughts about how they would go about, you know, deciding whether or not they’re going to take care of their own family members.

This is their shame about themselves, or maybe guilt about themselves, is showing through in the way they talk to us as family caregivers. So it comes out as shame. Probably their shame, but it’s directed against us and it does sound like, “Oh, well that would never be okay in my family,” or, “I would never treat him like that.” Or maybe something a little more pointed like, “How dare you take your mother for granted.”

I’ve heard all of these, not necessarily directed against me, but in my work with family caregivers as an advocate for family caregivers, these are stories I hear a lot. And I just want to be really upfront and transparent here and say that I know this is something that I did before I took on my family caregiver responsibilities. I did it because I was uncomfortable when people would talk about family caregiving. So, putting shame on somebody, that was a way that I could put an end to that conversation and a big hurry.

I know now that what I was doing was jumping to conclusions, which I like to say, jumping to conclusions is our favorite kind of exercise as humans. But by doing that, I was also dismissing that person with caregiver responsibilities. I was minimizing their concerns and just in general, I was trying to shut them down and it was because I was uncomfortable. So I used to do this too, all right. I’m not pointing a finger at you. I mean, maybe I am, but I’m pointing the finger right back at me. I don’t do this anymore. At least I try very hard not to do this anymore, to be aware and not do it. It’s because of my own life now.

I just want to remind you that as I talk about this, as you listen to me talk about this, please remember that I am not a therapist or a psychologist. I’m not a sociologist. I’m not a social worker. I don’t have any formal training in this. I do have formal training as a coach, but you know, not as somebody who looks at data or interviews people or studies populations, that’s just not what I’ve done. What I am is a business coach, you know that. So, I work with people a lot professionally, but I’m also an advocate for family caregivers. So I try and speak up for those of us who are family caregivers, and I am a family caregiver too. What I’m talking about here is all based on my experience and my observations and the stories and the anecdotes that I’ve heard from other people. And what you are hearing today is really me working this out for myself in real time, and that’s because I want to have language to talk about it so that I can be a more effective advocate for family caregivers and a more effective advocate for myself in my own life.

What I really want to come out of this, of course, is so that I have some language to talk about it, and maybe you have some language to talk about it. But I really want is somebody to study this. Somebody in those academic and investigative and data professions, research professions, to study this so that we can understand it as much as possible.

And I want all of that to happen because I want this practice of caregiver shaming to end. I want this to be not okay in our culture. I know that’s a big ask. I never said that I was here because I want small things to happen in the world. I want big things to happen in the world, and one of those things is for the practice of caregiver shaming to end completely.

Now let me give you my definition of shaming so that at least we can start from the same place on that. I do know that this is a really, really hard topic. Of course, the thing about shame and shaming is that it’s something most of us recognize when it happens, and it’s usually by the way we feel. We feel it when someone does it to another person. We also feel it when it’s happening to us. I think it takes us a while to pick up on the fact, or to pick up on it when we are doing it to somebody else, that is way harder. So, it’s easier to understand shaming as it’s happening when you’re on the receiving end, or at least when you’re not the one dishing it out.

My definition then of shaming, okay, is attacking somebody’s character in an attempt to control or manipulate them, rather than talking about behaviors. And I’ll say that again. This is not coming from a dictionary. This is just my definition. That is: shaming is attacking somebody’s character in an attempt to control or manipulate them, rather than talking about behaviors.

And I said this already, but I also think that shaming often happens when somebody is trying to make themselves feel better about a situation. Sometimes shaming is on purpose. There are people who use shame and know darn well that they’re doing it, but also sometimes it’s less intentional. It’s a habit.

Or people are just repeating the shaming behavior that they’ve seen other people do. This is one of the reasons it’s so powerful to model the behavior that we want to see in other people, because people just pick up on things like shaming and think it’s okay.

I want to tell you that shaming is never okay to do, but I do know that a lot of people shame other people. I’m including myself in this. It’s something I’ve done. I know I still do it. I try very hard not to, but it is a real part of our culture. So, I’m not here talking about this to judge you or point fingers at anybody in particular. I just want to shine a light on this caregiver shaming that is happening so much every day.

In fact, I was thinking about my own podcast and it occurred to me, I have talked about this, instances of this, many times in my podcast. This is the first time I’ve called it caregiver shaming, that I’ve used that name for it. But there are two episodes that you might go listen to. And those are my interview with Kate Washington, who is the author of the wonderful book, Caregiving and Burnout in America, and those are episodes 91 and 92. In those episodes, she tells a story about being shamed as a caregiver, and this is the story she tells about the physical therapist who was in her home, who gave her a really hard time about not making bone broth for her husband. I highly recommend you go back and listen to that. It’s a really poignant, gut-wrenching story. That’s episodes 91 and 92.

So where does caregiver shaming come from anyway? Well, I think that it comes from a really old story that we like to believe about the caregiver being an abuser of helpless people. So, somebody who takes advantage of helpless people. And I’m talking about sick people, people who are elderly or not typical, not neurotypical. And today we would say that these are people who are neurodiverse.

These are all people who are still taken for granted by society. But way back, I don’t even think it’s that long ago, I mean, maybe 50 years ago. Definitely a hundred years ago, and more going back, these are the kind of people who were often just abandoned by society and they were just foisted onto these unpaid family caregivers. Because somebody had to do the work of taking care of these people.

And mostly what we wanted to do was just shut the door and pretend these people didn’t exist. And I think this story about having it be okay to shame caregivers really grew because our discomfort and guilt about abandoning those people was too much to bear.

I think it was too much to bear individually, but also culturally, as a larger society. And so we made ourselves feel better or at least tried to reduce our guilt and our shame by blaming and shaming the person who had to take responsibility, and that would be the family caregiver.

And in most cases, they were responsible for circumstances and situations that were way too far outside of their control. Probably outside of their ability, most of the time. Outside of their resources to get the help that they needed, or maybe even money. Like it maybe would have even been hard to come up with a way to pay to feed somebody.

So, all of this is actually a big part of Human Giver Syndrome. I’ve talked about this in a lot of episodes of the podcast. I think that’s a really helpful concept in a lot of cases to help us understand a lot of what goes on today, especially with family caregiving. And so I do encourage you to go back and listen to more about that.

Because Human Giver Syndrome and having it be okay to blame and shame the family caregiver, that’s just the way that we see family caregivers now. Like it’s okay to just take this out on them. And what happens is that we kind of alternate between putting them up on this impossibly high pedestal, right. Martyr, or the person who is the best person in the world or the most giving and loving person in the world. And so we hold them to this impossible standard and then we leave them to fend for themselves. And then blame and shame them when people, when something goes wrong.

When what we really need instead is something more in the middle, right. Where we’re just treating family caregivers like humans who happen to have these caregiving responsibilities. And this middle ground is something that I like to call supportive and responsible community. Where we form a community that welcomes people like me with family caregiver responsibilities and says, “Wow, this is a really hard job. What can we do to help you?”

So I do see caregiver shaming happen a lot in healthcare situations and with healthcare providers. I think what’s going on here is, there’s a lot of things. The first thing is it’s a lack of training about caregiver situations and the dynamics that go on with caregiver situations.

Also, you know, a lot of times in healthcare situations with family caregivers and the people we care for, those are going to be emergency situations or things that really are incredibly urgent. And so that means there’s a lot of stress there. And we know that most people don’t perform at their best, or at least treat other people in the highest way they possibly could, when they’re carrying around a lot of stress. I do have to acknowledge that here.

Another thing that’s really going on here is that, healthcare providers are humans like the rest of us. And so, I know that one thing that’s happening is they are carrying around some of their own family dynamics, so it’s really, really complicated. I mean, healthcare in the United States is incredibly complicated anyway. We could be talking about any kind of healthcare provider, from a doctor to a nurse, to a physical therapist.

The things that I hear people say to caregivers are things like this. “You should not let him go so long between shaves,” or “You should not have let her sit in her own urine for so long,” and “You have to get her to shower more often.” These are the things that we hear and I don’t know if you can hear it there, but there’s definitely blame and shame for circumstances that are probably outside of the control of the family caregiver.

I’m not making an excuse, by the way, if somebody truly is neglecting someone, but I just don’t think that goes on very often. I don’t think there’s any data to support that that goes on a lot.

Now when it comes to families in particular, I see this kind of what is known as “seagull management” going on. And if you have never heard this term, we usually talk about it with leadership, like in a company. But I do see it happen in families too.

And seagull management is the kind of management where somebody swoops in, craps all over everything, and then just leaves. Okay, so this could be the auntie who visits from Florida and happens to be a nurse. And you know, she’s there for one day and talks about how everything is wrong and goes around fixing everything and getting everybody all worked up, but then just leaves.

I see it primarily in people whose job it is to assess a situation very quickly and just once. So that might be a relative, well, a relative would think that’s their job. It’s not their formal job. But also, this would be anybody who might do a home visit just one time, and that could be a physical therapist or a social worker or a visiting nurse, but it also could be a pastor or a good friend. Or that auntie who’s only in town for that one single day.

One of the things that we miss in these kinds of seagull management situations, is that we forget that caring for adults, who are adults and have autonomy and their own wants and needs and desires. Even if they have a devastating disease or cognitive impairment, they’re still adults. Caring for adults is not like caring for kids. If somebody doesn’t want to shower, it can be extremely difficult to get them in the shower. If somebody does not tell you that they peed in their diaper or in their bed and you don’t find out about it until the next day because they were embarrassed and they didn’t want to tell you, that’s very difficult to deal with in an adult.

In fact, caring for adults can be so difficult that I have heard many stories of paid caregivers – okay, so people who actually get paid to do it, who probably are not relatives, paid caregivers – who quit when their patient wouldn’t cooperate, that is how difficult this can be. What we have to remember is that most family caregivers either can’t do that or don’t do that, or maybe they won’t do that. They probably don’t think that they can do that. Okay? So it is not the same as caring for kids.

I’ve also seen, by the way, a lot of shame at work around family caregiving. This is a little harder to spot, but listen up for things like, “Oh, you’re just so tired all the time. You have to have better focus. I’m really concerned about your ability to give enough at work.” Or this might be telling somebody that they’re taking too many vacation days. Or ignoring their requests to learn more about FMLA or denying their requests for family leave. Or it might be stacking up violations against them on purpose, in order to build a case to fire them based on performance. But you’re really being a lot harder on them than you’re being on people who don’t have family caregiver responsibilities.

I know that’s a lot. Let me say, as I’m starting to wrap this up here is that family caregivers have rights, human rights, just like everybody else. We have a right to have boundaries, to tell people what’s okay and not okay with us. We have a right to get a paycheck if we want or need a paycheck. We have a right to get some rest and take vacation days. We have a right to be seen and heard. And demand to not be judged for things that other people aren’t seeing or can’t see. And we get to tell our own side of the story, and we also have a right to live our own lives too.

Too often what happens is that caregiving responsibilities happen in a vacuum, but it does not have to be that way. We know that it does happen that way, but that’s not a rule. It’s not like somebody sat down and said, caregivers have to take on all of this responsibility without getting any help. But that is where a lot of this shaming comes from, I think, is that the people who are putting the shame on others, they just aren’t living the life of that person with caregiver responsibilities in that situation. And so they aren’t seeing even a tiny fraction of the real situation.

I mean, I have family caregiver responsibilities and the more I understand this as an advocate for family caregivers, the more I realize how much I don’t know and how much I’m not seeing. I am making fewer and fewer assumptions about the lives of other people because I realize how much of this is really hidden from public view.

Also, the job of a family caregiver or any kind of caregiver is not to absolve everybody else of all responsibility so that those other people can feel better and be more comfortable and succeed and be happy, all right? That actually is Human Giver Syndrome when we believe that another person exists to absolve us of all of our responsibilities to be in charge of our own lives and our own happiness and success.

Human Giver Syndrome does not have to be the job of a primary caregiver or any caregiver. The primary caregiver has a gigantic job already, just as it is, and that’s because they’re probably serving as a coordinator of a lot of services. They might be taking on their own caring shifts themselves, particularly if this is somebody who is nearby, the person that they’re responsible for.

And they’ve also got a big job because they have to try to activate the community to help them in whatever situations come up, whether it’s when they can’t be there. Or when things get difficult or when there’s acute care that’s needed or whatever. So being a family caregiver is a huge job, and we do not need to put this Human Giver Syndrome set of expectations on them too.

So for those of us who have family caregiver responsibilities, one of the things that is possible is that we can learn how to be assertive and speak up for ourselves. And I have a client who did this not too long ago. This person’s mother, received some very, very substandard care from a physician.

And they went in to see this physician, and the physician looked at my client and said, “This is your fault. How could you have missed this thing going on with your mother?”  

And my client looked at that physician and said, “This is not okay. My mother was here last week and you missed this. You missed this during all of her appointments over the last few months. And this is not my fault. We need to figure out how to get this fixed, and I need you to stop telling me that it’s my fault.” That, my friends is a way to be assertive.

If you know any people with caregiver responsibilities, what I would like to encourage you to do is be generous toward them. And this is not just about helping when you can, making time to help, which is also great, right. We really want that.

But what I mean by generosity here is, be generous about being patient. Wait for the full story. Dig for the full story. If you need to, be an advocate for them and for their situation. Listen to them when they need to talk and help them get resources. This is what I mean by generosity.

When it comes to talking to people who have family caregiver responsibilities, one of the things that we need to do is learn to stop centering ourselves. Learn to stop putting ourselves in the middle of the story when we are talking with people who have caregiver responsibilities.

One of the ways that you can do this, if you are talking to a person with caregiver responsibilities and you have an emotional reaction of any kind, especially one that’s very strong, or if your gut reaction, your instinct is to try to get them to stop talking because your uncomfortable, please notice that. It is at that point that all of us are in danger of behaving in ways that I’m really naming here as caregiver shaming.

And I just want to leave you with this thought. If you have ever been in a situation where you know that you shamed a caregiver, and I’ve done it myself in the past, I am not here to judge you or to hold it against you. I just don’t do that anymore. I used to be a very judgmental person, but I am teaching myself not to do that because it’s not helpful. And especially I don’t want to do that because now I can see this problem of caregiver shaming from so many angles, and I want this to be a safe place where we can talk about things like this, but also a brave place that we can talk.

What that means is that even though I’m not here to judge you, I am also not here to make you feel better about it. You can do that work if you want to. That’s up to you.

My hope today is that by talking about caregiver shaming, that I can raise awareness so that now that I know better, and that you know better, together we can go out and do better in the world.

You can help more people celebrate themselves and find this podcast by leaving a review or sharing it with a friend who you think might need it. If you are interested in my business coaching or if you have a friend who might need me, and especially if that friend is a solopreneur or a small business. I will leave the link for that in the show notes too. Thanks for being with me here today. You can find out more about all of this work at Facilitator On Fire dot net. That’s Facilitator On Fire dot net.

If you haven’t already joined my free Boundaries community, what’s stopping you? It is the place to explore setting boundaries without judgment or guilt. There, you’re going to find just real talk about how humans really work. And you can find that community at Facilitator On Fire dot net slash Boundaries. I can’t wait to be with you again in the next episode, From One Caregiver to Another.