One year later

Transcript: One year later (Episode 54)

Hi there. I’m your host Kay Coughlin. And you’re listening to from one caregiver to another. I am a sandwich family caregiver. I have kids at home and I am also the primary caregiver to my mother. And I don’t believe the old stories and traditions about being a caregiver have to be true for those of us who are caregivers. I believe we can have dreams. Even when we have caregiver responsibilities, we have value as individuals. We deserve to say no and to have our own lives. Nobody can do it all of course, but we can decide what’s okay with us, what’s not okay with us, and we can dare to be ourselves. This is episode 54.

Well, it’s been a little over a year since I published my book, which is called “From One Caregiver to Another – Overcoming the Emotional Grind.” This book was a really big deal for me. First of all, I love to write, but second of all, I really needed this book. So looking back, I can tell you, I wrote it as much to help myself as I did to help anybody.

Today, I want to share with you some of my thoughts on the book and on my work since then. In chapter one, I wrote this: “There are plenty of articles that instruct us the caregivers to get more sleep and exercise, avoid alcohol, and keep a positive mindset, when family is lobbing opinions at us from all sides. But how are we supposed to use any of that surface level advice when the coping tools we have to work with are the very same ones we’ve always used and they haven’t resulted in any substantial relief so far? And what use are those old behaviors and coping skills in helping us manage and get relief from the emotional grind of being a person who is a caregiver?”

I think this is so applicable even still today. And I really want to shout it from the rooftops, even now when I read it, I think that’s something everybody needs to hear. If the life skills we’ve been using are not working, why would people keep telling us to use. No matter what you do. If you need to put a screw in the wall and all you have is a hammer, that hammer is not going to help you get the screw in, you need a screw driver. We need better tools.

And this tradition of blaming and shaming the caregiver for not being a more capable person who also wears a superhero cape. We need to understand that this ridiculous tradition has been around for thousands of years. It’s actually called human giver syndrome. That’s not something I put in my book. I didn’t get into it there, but that’s the name for it. And it’s this massive engine that keeps some people forcibly in roles, where we are supposed to serve other people. In the United States, we have this health care economy that depends completely on those of us who have caregiver responsibilities.

It depends on us to play nice and be polite and be quiet to just shut up and do our assigned work. Which is by the way, everything that needs to be done 24 7 without asking for help, because help costs other people time and money doesn’t matter what it costs us. It’s about what it costs other people.

But look, and this is the message that’s throughout the book, this is not the only way things can work. It’s just not. There are always going to be plenty of obstacles to changing our lives. This is true for all of us, plenty of things getting in the way of becoming caregivers who are people first and where our caregiver duties are just one part of our whole identity.

But just because it’s hard, it doesn’t mean it’s impossible. What it means is that we have to be aware of the system and we have to learn how to function differently in our relationships, get different relationship tools. Like these: it means learning how to ask for help, learning how to receive help and learning how to set boundaries. And those are three very different things. And when you put them together, it’s how we are finally going to get to live our own lives.

Again, one thing that has changed in the past year since I wrote this book is that I’m using some different terminology now than I was when I wrote the book. I don’t use the term loved one anymore to refer to the people we care for, or at least not when I’m talking about the caregiving relationship, instead I use the term care receiver. This is because I realized that there is a massive imbalance built into the term loved one when we use it in reference to being a caregiver. If you look at the two terms together, loved one and caregiver, then you really begin to see that it’s clear, they are meant that the person receiving the care is loved, but the caregiver is kind of incidental.

When you say care receiver and caregiver, on the other hand, I think there’s a much better chance that both people are going to know they matter in that relationship, that both people there will be seen to have value and worth. Now I do suspect that using the term loved one came from a place of good intentions to encourage people to treat care receivers with dignity.

But now I hear it used to minimize the value of the caregiver in relationships to make sure we all know that care receivers are more important. But I’m saying it again, that’s just not true. All humans have equal value period.

And also I am trying to use people first language throughout my work as much as possible. So when I am talking about caregivers, I try to use the term “people with caregiver responsibilities” if I can. Now it is awkward, but it’s accurate. And it’s a good reminder that caregivers are whole people too. And we just happen to have caregiver duties along with everything else going on in our lives.

A lot of people, when they find out I wrote a book, have asked me what it was like to write the book. I think that happens to most people who are authors. Well, when you write a book or set out to do anything that’s big really, there’s this healthy dose of faith that it’s going to make the world a better place. And even if it’s only just a tiny bit better. And I certainly went into this book with that mindset too.

And I’m like a lot of other entrepreneurs I know in that we simply want to help people. So when I wrote this book aside from just letting caregivers know that I see them and that I am one of them, I knew that I wanted the book to help people, but you know what? I launched this book during a pandemic. I launched a self-published book during a pandemic. To say it hasn’t exactly been on the best seller lists would be a pretty big understatement. For me, there weren’t any book launch events, not even virtual ones, because that really hadn’t yet been sorted out by back then.

I have found it really hard to connect with my readers because of being self-published, but also because I’ve had to figure out all of the technical details along the way. I wouldn’t have done it any other way. I have certainly enjoyed the process a lot, but because I’ve done everything myself, it means I haven’t really been able to focus on people, the people who could be helped by this book in quite the way I had pictured. Still, I have gotten some good feedback and I have been able to start some really meaningful conversations with readers.

I know that this short book hasn’t yet taken the world of caregivers by storm. So it’s hard to know just how much of an impact I’ve had, but I would like to share one story that you know, when I look at it, I have to say it really has given me all the feedback that I guess I ever will need. A few months ago, I talked to this dear friend of mine who had supported me throughout the creation of the book. I have some truly amazing friends and she is one of them. She’s not even a caregiver, but she loves the book.

So this friend was talking to someone who was in the middle of a really big problem. And my friend found herself trying to help this lady by explaining some of the big concepts from my book. She told me that it was only after that conversation that she realized just how much the book had changed her own outlook on life. She said she feels less trapped by certain people. Now she feels less stuck in a lot of ways, and she feels more compassionate towards a lot of people and more empowered to be exactly who she is.

In chapter three, I wrote this: “Making peace with your thoughts and taking different action means you’ll be able to live the life you choose. You will be able to create the emotional and physical life you want. And the best news of all is that you will not have to spend time or energy trying to control the people around you. For me, this means I am able to be caring and empathetic with my mother. But I don’t take responsibility for her anxieties any longer. I no longer dwell (much) on whether or not I get approval from my siblings. I certainly don’t spend any time trying to change opinions about me and I don’t waste my energy on guilt.”

Looking back on those words a year later, those words are still true for me. I don’t waste my energy on guilt. I don’t let it control me. It’s not that I don’t feel it, it’s that it doesn’t control my life. It doesn’t have any power over me. And I’d like to invite you to imagine for just a moment here. Ask yourself if you can picture living a life that is not crushed under the constant pressure of guilt, what would your mind be like? What would your heart be like if guilt and all of  those should and shouldn’t just weren’t the key ideas running your life.

If you could stop running around and “shoulding” yourself to death. What would that even be like? This is hard for us as caregivers, because one of the things that we feel gets ripped away from us is our right to make choices about our lives. We are told that now we are caregivers, we must believe in limitations for ourselves. We must believe now in the things that we can’t do anymore, the things we won’t ever have now, the vacations we won’t take, the feelings we ought not to feel. And the dreams that are just too far out of reach for us. Because that’s the message we always hear from so many areas in our life, from people, from doctors, from social workers.

I want to read this passage that I wrote in chapter six, before we close. Here it goes. “You no longer have to suffer when the opinions, beliefs, and actions of those around you differ from what is in your mind and in your home. You can love them and yourself, even when what you want is not what they think you should want. The emotional grind of being a caregiver is typical and normal, but it is not the only choice you have.”

And that is what I would like to leave you with today. No matter what circumstances you’re living with, you have a choice. You always have a choice. You might not have the skill or knowledge or support you need yet, but those will come. You can find those. Your first step to changing anything is always going to be to notice what’s going on and do your best not to judge yourself for whatever your circumstances are right now, and learn to see what you really want and need in.

If you do want to get a copy of my book, you can go to my website and I will leave a link for that in the show notes.

Thank you so much for listening today. You can learn more about me and about all of this work at facilitator on fire dot net. And that is facilitator on fire.net. And there’s a lot of good stuff there. You’re going to find links to my online community, to learn about boundaries and to learn more about human giver syndrome.

If you want almost daily doses of healthy support messages for family caregivers and sandwich family caregivers who want to dare to live their own lives, please follow me on Instagram. There’s a link for that in the show notes, too. If you liked this episode, please leave a review and think of two people you can share it with. If those people are new to podcasts, please show them how to subscribe. Word of mouth is the best way to help podcasts grow. And if this podcast grows, we can make sure to help more caregivers.

I can’t wait to be here with you again in the next episode, From One Caregiver To Another.