The story family caregivers are “supposed to” step into, even if they feel trapped by it

Transcript: The story family caregivers are “supposed to” live (Episode 26)

Hi there. I’m your host Kay Coughlin. And you’re listening to From One Caregiver To Another. This is episode 26.

Hello, to all my fellow family caregivers out there. I am talking to you from one caregiver to another, but we are not going to talk about caregiving. There are enough people out there and enough resources on the act of becoming a better caregiver. So we’re not going to talk about that. But I am here to talk to you about how to be a person first, your own person first, who just happens to also be a caregiver. And this isn’t a model that’s really totally foreign to us. I mean, parents do this all the time, right? So it’s not easy, but it’s totally possible to live from that place of and. It sounds something like this. I am an entrepreneur and a mother and a wife and a caregiver. And these all can get fair time from me and I can ask for help with anything I want with all of these roles, I do them all.

So while I do believe that you will become a better caregiver as a result of living your own life and becoming more fulfilled because that’s what I’ve done in my life. That is not my chief goal here. My work in this world is about you and me and becoming our best selves, figuring out how to live the lives we really want all while being caregivers. And this is a real honor for me, I feel so delighted to be spending this time with you, helping you sort through this the way I have sorted through it over the past few years.

So I feel like we need to start at the very beginning of the caregiver’s journey. I want to talk about the story that we step into when we first become a family caregiver. I noticed this back when I became a caregiver, that it felt like somebody else wrote this chapter in my life. But back then, I couldn’t really find the words for it, I didn’t know how to describe that I was living a life that I wasn’t choosing the roles. I wasn’t choosing the story. I wasn’t choosing the characters. I wasn’t choosing how it was going to play out. And I wish somebody had pointed this out to me so that I could have seen it back then. There were just so many expectations and assumptions about what I would be like as a caregiver, how my life would change, the things that I did not have control over and how I would conduct myself in the caregiving situations. I didn’t know back then that these details of the story, they’re not necessarily true, that we actually do have a choice and these expectations people have for us, it’s just really one way that it can be done.

I felt really trapped by these expectations by these stereotypes. But then it finally occurred to me to ask if I had a choice about this stuff. And mostly when I remembered to ask and then got up the courage to ask the answer seemed to be a big fat no, as in no I wasn’t really allowed to ask for help or expect other people to change their lives too, since as the primary caregiver, I was the one who had agreed to do everything all the time. So, no, actually I couldn’t impose myself on anybody else and I couldn’t be seen as an inconvenience. But this made no sense to me because I was beginning to learn that in all areas of life, we always have a choice.

So I started questioning these stereotypes and it turns out that none of it has to be true. Even family caregivers are allowed to do whatever they want and make different choices. Doing it differently might not be an easy choice to make, but it’s possible. And since I wanted to be me and live my life, a life of my choosing, even while being a caregiver, I had to figure this out, I had to figure out how to do this. I had to figure out how to think in a new way. But before we get there, we really have to talk about these stereotypes because these stereotypes of caregiving, they’re so strong in our families, aren’t they? The thing to know about stereotypes is that they aren’t true. There has never been a person born that is an exact perfect example of any stereotype. Human beings are really complex and our brains don’t like things that are complex. So to simplify things, our brains create these categories, they like to categorize our world into these stereotypes. It’s because it helps us to predict what’s going to happen next so we can spend less time and energy figuring out how we’re going to respond.

But these stereotypes are actually a dangerous trick we play on ourselves. We kind of slide into believing that they’re true and then we stop questioning them. And then we end up letting the stereotypes we believe in make our decisions for us. And gradually we stop living a life that’s true to us, true to what we want and what we value. So what are these family caregiving stereotypes that people might assume are true for you and maybe insist should be true for you? Now, maybe you don’t relate to all of these and that’s because every caregiving situation looks different, but the ones that you do relate to, maybe they don’t work for you, maybe they don’t describe the way you want to live. So I’m going to name these stereotypes and shine a light on them to help you see them and how they play out in your life. The way I’ve done for my life. I’ve identified nine stereotypes for our purposes here today, I think there are a lot more, but these are the basic ones that I really want to get into and here they are.

Number one, existing family dynamics have to stay the same. This could be that you have the favorite sibling in your family or that there’s a trouble child or a black sheep or a good girl. And I think the stereotype of the good kid, this is the one that a lot of caregivers end up playing out. So these family dynamics that we expect to stay the same, they can also be things like dad can’t be expected to learn to clean anything because he never has. Or mom still has to cook every Sunday dinner, no matter how exhausting and strained it is for everybody. Or Christmas Eve has to be at mom and dad’s house, no matter what else is going on, no matter the toll it takes on everyone.

Number two, every caregiving situation looks the same. This one is totally hilarious to me because there are 53 million people in the US alone who identify as family caregivers and every single one of them, every single one of us, has a different situation. The reasons we became caregivers, the family dynamics we’ve inherited and our finances and our jobs and our health issues and the regions of the country we live in and whether we live in the city or whether we live in the country, these are all different. They vary wildly between any two situations that might seem very similar when you look at them from the outside.

Number three, we have to call the care receiver, the loved one. I strongly disagree with insisting that we call the care receiver, the loved one at all times. And truthfully, I adore my mom, she’s the care receiver in our situation and I love her. I love her so much and I still really don’t like talking about our caregiving relationships in terms of her being the loved one and me being the caregiver. And I have to say something else that I know is going to make some people very uncomfortable, but not everybody becomes a caregiver out of love some people do this out of obligation. And it’s because of that, that I understand that calling the care receiver, the loved one is supposed to remind caregivers to be kind and gentle. But I think it puts the relationship on very unequal footing.

And that leads me to the next stereotype, which is number four, we must put the care receiver first, always. I’m not even sure I really need to describe this one because if you are a family caregiver, and this is your story, if you can relate to this one that the care receiver always has to come first, then you can feel this one in your gut. You already know for sure that you’re always going to put yourself last, or at least you won’t put yourself first, you won’t put your needs ahead of the care receivers, not ever, because that’s just not how it’s done. And it would be cruel to the care receiver to even think of putting yourself first ever.

Number five then in these stereotypes is we believe the care receiver can’t or won’t grow or change and shouldn’t be expected to. The truth is that most of the time people can change at any age you can change and the care receiver in your situation can change. I do know there are exceptions to us and those would be certain diseases and some trauma situations. I know these situations exist and I do not want to diminish those situations, but they’re the exceptions and not the rule.

Number six, we believe the care receiver has somehow earned the right to not participate in their own care. Yikes, we are actually trained to let people off the hook in terms of making changes in their life, just because they’ve reached a certain age or a milestone like retirement. This retirement myth or this story of being too ill that you have earned the right to sit around and fall apart, I don’t understand that at all. I know it causes a lot of heartbreak and a lot of suffering for not just caregivers, but also for care receivers. For people to expect that you have somehow earned a situation where you can sit around and disintegrate, that’s not good for anyone.

Number seven, the caregiver must become an expert in caregiving duties immediately with considerable skill. Oh, and if you don’t, you should be ashamed of yourself and you should carry that guilt with you. And this is whatever skills we’re talking about, it could be finances or estate planning and end of life documents, could be figuring out how to run the lawnmower or something really, really complicated like skilled nursing. Maybe like understanding dialysis or even how to physically help the care receiver move around. There’s going to be a learning curve on all of these, there are people who spend years mastering these skills in schools, or by working in a trade. It’s totally unrealistic to expect a caregiver to master these skills. But also it’s unrealistic to expect a caregiver to want to master these skills. If you don’t like cleaning the house, you’re not suddenly going to love cleaning the house for the care receiver. And these skills are going to differ greatly, depending on your unique situation.

Number eight, the caregiver must put on a brave face and at least pretend to be happy about the situation and if you’re not, keep your mouth shut because nobody wants to hear you complain. Ouch. I think this is one of the loneliest stereotypes about being a caregiver. It’s depressing and alienating to think that you’re not supposed to tell anyone how hard it can be to be a caregiver. It’s exhausting to carry around this weight, this belief that you’re supposed to be stronger, you’re supposed to need less sleep, you’re supposed to pretend you have it all figured out and keep your trap shut if you don’t and if you don’t like it.

And then number nine, it’s the caregiver’s responsibility to not at any time, at any cost inconvenience anybody else. Don’t inconvenience the care receiver, not family members, not healthcare personnel and not even and this one drives me crazy, don’t even inconvenience paid caregivers. Don’t even inconvenience the person you are paying to help you. I kind of want to leave this one right here, because if you identify this one, you know who you are. I have to tell you that I identify with this one at my core. I have been living with this idea that I should an inconvenience anybody else for my entire life. And I mean, when I was a student and when I was an athlete running track and when I was in college and as a wife and as a mother, and now as a caregiver, and even when I was a colleague, I really felt like I shouldn’t inconvenience anyone else. And if this speaks to you, I am talking directly to your heart from my heart, I know the pain, I know the loneliness, I know how hard this one is to overcome. I’m here for you. And I see you.

That’s really the truth with all of these stereotypes, I see you. I know that these might not be true for you in the way that they haven’t been true for me. And I know what it might feel like to be up against a wall, up against a system that isn’t designed to accommodate for the fact that you’re different and you don’t relate to these things.

So let me go over these stereotypes one more time here for you real quick, because what I really want to leave you with today is having name to these for sure, but also having an understanding of them so that you can think back and figure out how they really relate to your life and what it might mean for you to start to dig in a little bit and really think about, are these true for you? And are there any of them that you want to change and maybe want to buck the system over time? So here they are, the nine of them, the stereotypes.

Number one, existing family dynamics have to stay the same, there’s no choice in that. Number two, every caregiving situation looks the same and there is one solution and only one solution for all of us. Number three, that we have to call the care receiver the loved one at all times. Number four, that we must put the care receiver first and always. Number five, we believe the care receiver can’t or won’t grow or change and should not be expected to. Number six, we believe that the care receiver has earned the right not to participate in their own care. Number seven, the caregiver must become an expert in caregiving duties immediately and with great skill. Number eight, the caregiver must put on a brave face and at least pretend to be happy and if not, keep your mouth shut because nobody wants to hear you complain. And number nine, it’s the caregiver’s responsibility to not at any costs, inconvenience anybody else.

So I want to ask you, which of these resonates most with you? I really want to hear from you. What’s your situation like, are there stereotypes about being a family caregiver that you would name a little differently or maybe big ones that you think I’ve missed here? Because we’re all different, I want you to challenge me on this, I want you to talk to me about what your life is like as a caregiver. You can leave me a comment below, you can email me. My email address is kay @ facilitatoronfire.net. That’s K-A-Y@facilitatoronfire.net.

Thank you so much for being here with me today. You can learn more about me and my work at facilitatoronfire.net. That’s facilitatoronfire.net. And at my website, you can also sign up for my newsletter, which is also called From One Caregiver to Another. Please follow me on Instagram, there’s a link in the show notes, if you want almost daily doses of straight talk from me for family caregivers, like you and me, who are tired of feeling trapped by the traditional definition of being a so-called good caregiver. If you liked this episode, please consider leaving a review and that’s going to help other caregivers find their way here. And definitely tell a caregiver friend who also needs a boost in their confidence to design and live their best life, which oh, just happens to include their caregiving responsibilities. But it’s a life that doesn’t have to be centered solely on those duties. I can’t wait to be here with you again in the next episode.