Long-term stage of caregiver responsibilities

Transcript: Long-term or more stable stage of caregiver responsibilities (Episode 47)

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 the primary caregiver for my own mother. And I don’t believe the old stories and traditions about being a caregiver have to be true for us. I believe you and me, we can have our own dreams. We can say no and live our own lives. And we deserve to do that too. Nobody can do it all but us, you and me, we can decide what’s okay and what’s not okay. And we can dare to live our own lives. And that’s what this podcast is all about. This is episode 47.

Before I get into the topic for today, I’d like to let you know that I’ve got a workshop coming up to help you learn about boundaries during the holidays so that you can have holidays that are more fun for you. And that workshop is going to begin in mid October. So if you want to find out when that registration goes live, make sure you sign up for my newsletter and you will find that link at my website, which is facilitator on fire.net. And you’ll want to go to the learn more page.

Today, I’m going to talk about the long-term or what I think of as the more stable stage of being a person with caregiver responsibilities.

The four stages I talk about are early caregiver, which I talked about in episode 45, then short term or acute and I talked about that last week in episode 46. And then today is about this stage of long-term or more stable. And then that’s just going to leave the post caregiver stage still to come in this mini series. You can listen to all of the episodes, or you can just find the one you need right now so that you can get a better understanding of whatever stage you’re in currently. You can even help a friend by directing them to the specific episode that will be most helpful for whatever stage they are into.

I call this stage the long term or more stable stage of caregiver responsibilities, because by the time you get here, the caregiver situation will have stabilized somewhat. Of course, there are always going to be changes in your situation. That’s called life. But at this point, the majority of the responsibilities you have will be well understood. And you will have been managing these responsibilities on an ongoing basis somehow. Okay it might not be what you love and it might not be something that you think you’re doing well or that makes you happy, but you have been managing.

Now you may or may not be living near or living with your care receiver. Even in this stage, I know many primary caregivers who live hundreds of miles away from their care receiver. Your proximity to your care receiver, well, that has nothing to do with your status as a caregiver in any of these four stages that I discussed.

Now I want to get back to what I just said a minute ago. And I just want to be really clear because I don’t mean to imply here that you will or will not be happy or content or satisfied with the way your caregiver duties are working out for you. In fact, I would say that’s a hallmark of this stage of being a caregiver. Quite a lot of people in this stage are very dissatisfied. In fact, while burnout and overwhelm can happen in any stage, this long-term stage is where you’re going to start to feel the grind that leads to burnout and overwhelm.

In the short term stage or the more acute stage, the burnout and overwhelm is more likely to come from the rapidly changing situation and the quick ramp up and intensity of the responsibilities. But here it does come from what feels like over time is a real grind.

So I’d say that I am in the long term stage of caregiver responsibilities with my own mother. At first I want to tell you that I did find this stage to be very overwhelming and hard to handle, but it turns out that was because I was trying to do it all alone. And I was trying to prove to the people around me that I didn’t need their help. I used to spend a lot of time pushing people away and insisting that I was totally fine managing on my own. I can’t quite recall how long this lasted for me. I think it was at least a few years. But it started getting really hard for me when mom decided that she shouldn’t be driving anymore. And I agreed with her on that. So I don’t know maybe I went through a very difficult time for a year. It’s just hard to remember. I really didn’t keep track of what I was feeling, unfortunately.

And of course, at some point there, this pandemic hit and we as a family decided to isolate ourselves as much as possible and all of this on top of what I had already been feeling led to some very serious burnout and exhaustion for me.

What changed was once I started inviting people to help again. And once I started letting them help me again, my burnout really did lift. It was amazing. Actually, what happened was I started calling my sister who lives here in town for more help running errands.

And at the same time, I asked my two teenage boys to spend time with my mom – they call her Mammaw – to help keep her company. And they were really glad to do that. In fact, I have to tell you that my mom ended up spending a big chunk of the first part of our isolation, our pandemic isolation, helping my younger son learn how to cook.

And then also at some point I encouraged my mom to go to online meetings so that she could still visit with friends. And she started really getting into that. And it definitely helped to have friends and far away family members for her to socialize with again, that helped her and it helped me.

All right so in this stage, one of the loudest messages you’re going to be hearing from other people, and I mean, relatives and friends and colleagues and even healthcare professionals, is that things are hard because that’s the way it is and that you can’t change any of it. They are going to tell you that you have to give up everything else to be a so-called good caregiver, at least according to their definition.

The traditional model of caregivers at this stage is to sacrifice all of your wants and needs and do everything the way the care receiver wants it, and shoulder the burden alone. And don’t ask for help. Don’t talk about how hard it is. And most of all, don’t bother people repeatedly when you need help. But I want you to know, and this is really critical, this does not have to be true for you. No matter how many people say it to you.

If you do continue to do things the old way, the way people tell you should be done, of course, nothing is going to change. But you can learn to approach your situation in your life differently and you can change and you can still dare to live your own life. I know this because I’ve done it for myself and I help my clients do it too.

One important thing to remember during this stage of your caregiver responsibilities is this:  whatever it is you’ve struggled with for your whole life, you’re still going to struggle with that unless you do something different and I will get to that in a minute. So if you have tension in a relationship, that’s not going to suddenly go away or get better. If you are caring for your mother and she has always treated you like a child, well, that’s what you’re going to be dealing with except more of it. If you have a family member who was always borrowing money from your care receiver, that is not going to stop.

 

Now, if you’ve always had self-esteem or confidence problems in a key relationship, it’s still going to be that way.

Another thing that’s going to happen during this stage is that you’re going to notice that other people are jealous or resentful of the time and money you spend on your caregiver duties. This doesn’t happen to a hundred percent of the people, but it’s really, really common, and you could see it with your spouse or other close family members. And they might tell you with words or they might do things that are a little more passive-aggressive. Like tell other people, but not tell you directly.

You might see this showing up at work. If you notice a supervisor giving you a hard time about your work hours, or if they are suddenly focusing on issues that aren’t related at all to your job performance, but on their perception of whether or not you are committed to your job.

And I just want to remind you that navigating all key relationships can be challenging at the best of times. So it’s no wonder that it can be hard when you have caregiver responsibilities too.

For most caregivers, here’s the progression. Here’s what this looks like. At first, when you enter this long term stage, you’re going to settle in and you’re going to feel like you can easily manage your caregiver duties and keep up with your own life too. But that first feeling of being able to do it all can wear off really quickly. And that’s when you’re going to start to feel exhausted and overwhelmed and burned out.

One of the challenges of being in this longterm stage is that every day you’re in it, you’re going to be teaching everybody around you how to interact with you. So if you consistently tell them that you’re just fine on your own and you don’t need anything, that’s what they’re going to remember. That’s the lesson they’re going to learn.

So take a deep breath here because you can learn how to change and manage all of this so that you can live a life that’s more what you want.

So how do you manage all of these things that are very possibly going to start feeling more difficult over time? Well, I’ve got a list here of seven specific things that you can do that every caregiver can do. And I just want you to know that it’s never too late to start doing any of these to improve the quality of your own life. No matter how long you’ve been in your situation, these apply to you. So even if you already feel like your situation is hopeless, please keep listening.

First and probably most important of all of these is to learn about boundaries. The simplest definition of a boundary is what’s okay with you and what’s not okay with you. I’ve done a couple of episodes about boundaries and those are episodes 33 and 43. So I’m not going to spend a lot of time on this. I also did mention in the housekeeping at the top of this episode, that I have a workshop specifically on boundaries and the holidays, and that’s coming up in October.

But please remember that every human even you deserves to have boundaries and is worthy of having boundaries. Every human deserves to be respected and to be in loving relationships too. And setting boundaries is what will make that a reality for you too.

Second, I highly recommend you learn about what human giver syndrome is. The short version is that it’s the belief that some people exist primarily for the benefit of the people they care for. And this can be applied to you and me, whether or not we agreed to it or asked for it. Human givers then are expected to pour out everything they have and everything they are no matter the personal cost so that their people can thrive and succeed.

This is a set of beliefs that has been around for thousands of years. And it is just solidly embedded in a lot of cultures. But, and this is the important part, that doesn’t make it true. It’s just a bunch of stuff people have said to us across our lifetimes, but that doesn’t make it true either. And it doesn’t make it right for you or for me.

So the term human giver syndrome is pretty new. And if you haven’t heard it before, that’s probably why. And again, I’ve done at least two episodes on the topic. Go back and look for episodes 31 and 44, because I’ve put some references there where you can learn more so you can listen, but you can also do more of your own research if you want.

And I want you to know that I do regular webinars on human giver syndrome and you can of course find out more about that at my website.

Third, do whatever you need to to ask for help and receive help because you deserve to have help. And you do not have to do this alone no matter what people will tell you, just because something is your responsibility does not mean you have to do all of the things all of the time. It doesn’t mean that if you are a leader and it doesn’t mean that if you’re a caregiver, so try to think of your helpers as your care team and yourself as the leader or manager of that team.

I’d like to think of thismlike the carpool I manage for my younger son’s group of friends on the cross country team. I don’t have to drive everybody everywhere all the time, but I am responsible for making sure that we’ve made arrangements to know who is going to drive and on what days. So maybe you could build a “care pool” to help you manage all of your caregiving responsibilities. The point is start figuring out how to get help. And by the way, learning about boundaries will help with this too.

Four, be in communities, do not isolate yourself. It might be hard to do this because you might have to be genuine and honest and a little vulnerable with people as they get to know you and your situation, but do not become isolated. Humans do best all of us when we are in communities with loving people who care about us.

Fifth, do not believe it when people tell you that your life has to be limited. Now don’t fall for that. The logistics of your situation may have changed, but that doesn’t mean your life is over or that you can’t plan for your future. If you want a career, you can still have a career. If you want a happy marriage, you can still do that.

If you want to have a future after being a caregiver, well, now is the time to begin putting that in place. It might not be easy, but life isn’t really ever easy anyway, no matter what your situation is. So don’t think of this stage of long term caregiver responsibilities as the time when you finally have to give everything else up because you have no choice. That’s just not true.

Sixth, do not believe it when people tell you that your care receiver can’t change and that you shouldn’t ask them to do things a different way. Now, I do want to acknowledge that of course there are health conditions that prevent people from changing, and those would be things like some traumatic brain injuries and dementia and a few other conditions and diagnosis.

 

But being elderly or stubborn is not a valid reason to prevent someone from changing. So this is another topic that I did an episode on and it’s number 34. And you might want to go listen to that, to learn more about how you can expect people to change at any age.

And then last, but certainly not least, I highly recommend to all caregivers in this stage to get therapy or coaching or be part of a real time support group. I do want to say here that Facebook groups can be helpful. I have one, and you can find that by going to the learn more page of my website, but Facebook groups and online groups are not an adequate substitute for real time interaction with a support group or with a therapist or a coach.

I’ve said this again, but you do deserve to be in loving relationships. You also deserve to take care of yourself and your needs. And getting help for your mental health and making a plan for how to live your own life is the very best way to plan and practice for your own self care.

Before I close for today, I’d like to challenge you to dive into just one of the seven things I talked about in this episode, you don’t have to start with the one that would be the most difficult for you. If one of these seems easiest or most attainable to you, just go ahead and start there. As I said, it is never too late, no matter how long you’ve been in your situation.

And when you are taking steps to move towards living the life, that’s best for you and right for you, even when you’re in the long-term stage of being a caregiver, there is no step in that direction that is too small.

That’s it for today my friend. In the next episode, I’m going to talk about the final stage of caregiver responsibilities, which is being a post caregiver. So stay tuned for that.

Thank you so much for listening. You can learn more about me and about all of this work at FacilitatorOnFire.net. That’s facilitator on fire.net, and there’s a lot of good stuff, including links to my book and to learn more about human giver syndrome and about boundaries.

If you want almost daily doses of straight talk for family caregivers and for sandwich, family, caregivers who want to dare to live their own lives, please follow me on Instagram. And there’s a link for that in the show notes.

If you liked this episode, please leave a review. Think of two people you can tell about it. If they’re new to podcasts, show them how to subscribe. Word of mouth is the absolute best way to help podcasts grow, which will help more caregivers find their way here so they can live their own lives too, just like you and me. I can’t wait to be here with you again in the ne