In This Together: Building Resilience When Caregiving for Your Partner

19. Thriving, Not Just Surviving as a Caregiver

July 02, 2024 • Marika • Season 1 • Episode 19

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As a caregiver, it's easy to feel like your life is on hold, just waiting for things to get back to normal. I've been there myself and seen it in my clients. In my latest podcast episode, I dive deep into how to avoid this trap and start living fully, even while caring for a partner with a long-term health condition.

I share real-life examples and personal stories to illustrate the subtle ways we can fall into a holding pattern. You'll learn about the power of making deliberate choices in your caregiving role and how this can transform feelings of resentment and frustration into empowerment and fulfillment. I'll guide you through recognizing when survival mode is necessary and ensuring it remains temporary, so you don't settle for a less-than-life.

This episode is packed with insights on turning caregiving challenges into opportunities for personal growth. You'll discover how to embrace your current life, prioritize what truly matters, and live fully now. Don't wait for things to change – start thriving today. Listen to the episode and find out how you can make the most of your caregiving journey.

Resources:
Navigating the Silent Grief of Caregiving

As a Resiliency Coach for people who are caregiving for their partner, I'm here to support YOU, the caregiver. Learn more about my work at www.coachmarika.com.

Marika Humphreys:

Caregivers and care partners welcome back. How are you? I have been a bit under the weather recently with a really bad cold. It came on really gradually and started with a sore throat and then just progressed to congestion. Then I ended up with a lot of body aches and it knocked me out for like a day and a half where I just essentially slept all day. I couldn't believe I could actually sleep that long, but I am feeling much better now, and today I want to talk about something that is really more food for thought, something to think about and really just question in your own life. So today is going to be less about steps and more about just giving you some good things to think about that often come up for caregivers.

Marika Humphreys:

I am part of a committee that puts on a annual educational conference for caregiver survivors in my county in Washington, and this year one of the speakers we brought on was both a certified physician's assistant and a cancer survivor, and she shared some eye-opening statistics with us during her talk. One of her slides showed that, essentially due to the advancements in medicine over the past several decades, the number of people living 10 or more years after a cancer diagnosis has significantly gone up since 1975. And that number is expected to continue to rise in the coming decades. So what that means is that in general, people are living much longer after a cancer diagnosis. Even people who have stage four cancer, where the disease has spread from one part of the body to another part of the body even people in that situation are living longer than they ever have before. Stage four cancer used to be considered a death sentence, but now, because of advancements in medicine, it is changing that story. And she did point out that there are certain types of cancers that are seeing those improvements in longevity more than others. So obviously everybody's situation is different. But the takeaway that she wanted to present was that people diagnosed with cancer are living longer post-diagnosis more than they ever have been.

Marika Humphreys:

And speaker primarily focused on the cancer survivors in the room because that's what our conference is about. But as she was sharing those statistics, I couldn't help but think about all the partners and all the caregivers of those cancer survivors. This shift in longevity affects them too. So the question that she presented to the audience was what's the difference between merely surviving and truly thriving? So today, that is the topic I want to delve into, not from the perspective of someone with a cancer diagnosis. But from the perspective of someone with a cancer diagnosis, but from the perspective of being a caregiver or a care partner. So if your partner cancer or some other long-term health condition, like a stroke or dementia, how can you live your life in a way that you are not just surviving but actually thriving? I want to explore today what that looks like and how we can avoid the subtle trap of putting our lives on hold or living less.

Marika Humphreys:

Most people fall into the role of being a caregiver unexpectedly, in that it's something they don't plan for or prepare for. So often their partner receives a diagnosis or experiences a major health event that leaves them debilitated and then overnight they become a caregiver. Sometimes that transition happens a lot more gradually, that one person's health will just decline over time and the other person becomes their caregiver. But we often don't plan for this role. We adapt to it over time as our partner's various needs changes and we just take on caregiving responsibilities and usually we just take them on in addition to our regular life, and I think what I see happening is we end up finding ourselves in sort of a holding pattern, just getting through the days and our life can become narrow as a caregiver and I think this happens for various reasons and due to various different circumstances. With illness or a diagnosis, I think it can often feel like we are in a holding pattern, like we are just waiting for our partner to get through their treatment or get through the surgery so that things can go back to normal, and it feels like the period we're in battling the cancer is like a detour from regular life and then we just want to get back to regular life. The way things were I really experienced that firsthand during my husband's first year after being diagnosed. Our lives were pretty much on hold and partly that was out of necessity, in that we had to adjust to his treatments and then the surgery and our lives needed to change in order to accommodate those things. But our mentality was very much this isn't regular life, this is a detour that we're on and we'll eventually get back to things being normal. But I came to learn that that really wasn't a helpful way of thinking For my clients who are their partner has a longer term condition like a debilitation from a stroke or dementia.

Marika Humphreys:

They often see those clients as essentially resigning themselves to a less than life. They have become full-time caregivers and they just no longer see how they can have full life of their own. I recently had a client whose husband's health had declined and been impacted by his dementia which had progressed, and as a result she was his primary caregiver and he couldn't really do a whole lot on his own. And when she came to me she had reached a point where she just felt like she didn't have a life of her own anymore. She felt like her whole life consisted of caring for him. So those are a couple examples of how I see this sort of creep up in caregivers' lives, of putting our life on hold.

Marika Humphreys:

I also think another way caregivers stop fully living is when they haven't made deliberate choices about their caregiving role. They have fallen into being a caregiver and now find themselves stuck and unhappy. That happens when we end up in a place where we feel like we haven't chosen to be, we never wanted to be in the first place. We get resentful, and as long as we're feeling resentment about our situation, where we haven't owned the choices we've made around caregiving, we're going to feel stuck. When we want things to be different than they are, we'll be in a state of just surviving, not actually thriving. Right when we are arguing with reality, wanting things to be different, we see the reality of our life and we don't like it. So we just feel frustrated and resentful or angry, feel like maybe it isn't fair or this isn't right or something shouldn't be this way. I shouldn't have to deal with this. I never wanted this life. That is when we're going to find ourselves stuck and I will say that's a very normal feeling to come up. I have definitely been there. So if you are feeling that way, just recognize it, but know that that will keep you stuck and that will often keep you living less than life. So you want to notice it. You want to notice if that's where you're feeling.

Marika Humphreys:

When our lives shrink down, when we stop having goals or things that excite us or bring us joy, in essence we stop living, we stop living our full life and we put our life on hold, and that is when we end up merely surviving and not thriving. Now I do want to clarify something. Sometimes we do need to enter into a state of survival, and survival mode can be a really useful state. I actually teach this idea that we can have a deliberate survival mode, which involves recognizing when the circumstances of our life require us to cut out all the extras and just focus on the most important things. Usually, that type of situation comes up when your partner is going through a really intense treatment period, or they may be heading into surgery and needing to recover from surgery, or even if they're nearing the end of life. Those are often times where we may want to put certain things on hold and focus on only the most important things. That is what I mean by a deliberate survival mode. It's about being focused on what matters most and when you consciously think of it as a mode you are going to enter into, you can make powerful decisions about what those most important things are and what you want to let go of temporarily.

Marika Humphreys:

But those types of periods are pretty much necessary in caregiving at one point or another, and there may be several times where you go into survival mode, but they should always be temporary times. The length of time can differ depending on the situation, but it's not a permanent state. It should be always a temporary state. So that type of temporary situation is not what I'm talking about here. Instead, what I'm talking about is when our partner who we're caregiving for is in a more stable state or our life is fairly routine, and yet we are still living the survival mode or just living in a limited way. We've essentially put our life on hold or, as I keep saying, settled for a less than quality of life, and if you've done this, you'll know, because you'll likely be unhappy the feelings that come up when we stop fully living our own life are feelings of burnout, resentment, hopelessness, anger often, and sometimes it's just numbness.

Marika Humphreys:

When we're stuck in these emotions, it's really hard to show up for others in the way that we want. When we're stuck in our own misery, we're not able to be our best. I've been there. It just it feels terrible and often we feel guilty about it. As a caregiver, one of my clients recently shared that when she's feeling resentful about her situation, she ends up being short-tempered with her husband, which she feels terrible about. It's not how she wants to be. So then she feels guilty about her own behavior. And this is where we get into a cycle of adding misery onto our pain. We are already burned out and then we behave in a way that makes us feel guilty about ourselves, so then we add suffering onto our pain. So I really don't want you to think that this is all doom and gloom.

Marika Humphreys:

I share these examples because the first step is always just becoming aware of where we are when you've put your life on hold or stop living it in certain areas. You want to become aware of that. Where have you let routine or obligation take over instead of making deliberate choices? Where have you accepted limitations instead of questioning them and seeing what's possible? That same client whose husband had dementia. She felt like she couldn't leave him alone and go out and she was missing a social life. They lived in a small town and she was actually outside of town a little bit, so she was feeling really isolated. But she hadn't actually questioned that limitation whether or not she could actually leave him alone. And she discovered that in certain situations and with certain precautions, she could leave him alone and he was completely fine for periods of time. And she actually found other ways that she could leave him alone and he was completely fine for periods of time. And she actually found other ways that she could incorporate more of a social life. But it started with her just questioning is that a limitation that I've just accepted and haven't fully questioned One of the things that I have learned after having gone through my husband's cancer battle and actually losing him was that is that while that time was incredibly hard in countless ways it also presented to me a huge opportunity to grow.

Marika Humphreys:

Dealing with my husband's illness caused me to learn more about myself. It forced me to really think about what was important in my life. I got to know myself better than I ever had before. I got to really understand my own emotions and what triggered them and which ones I felt more than others, and how to allow those emotions and be okay with them. My life has now taken a path that I would have never expected years ago, and it's because of what I went through with him, with our family. It's because of the loss that I went through and how I worked to really find, to grieve and work through the grieving process and what I took away from that time about what is most important to me, what I care most about, what I want to focus my life on. So I share that because, no matter what your caregiving situation is, I want you to think about how this very situation is also opportunity for you to grow. It's an opportunity for you to get to know yourself better, figure out what's most important. Your struggles can propel you to find deeper answers for yourself and for the life that you want right now.

Marika Humphreys:

The things that we struggle with as caregivers are usually just the same things that we struggled with before we were caregivers. They're often just magnified. I have shared the story of how I really struggled with feeling burnout in my career when my husband was battling cancer, but I was struggling with that feeling before he was ever diagnosed with cancer. It wasn't a new thing that came up. It was something I was struggling with beforehand, and cancer and our situation magnified my feelings because now I could blame cancer, feeling stuck in my career on cancer, instead of just taking ownership for my own decisions that led me to that. So it was an opportunity for me to really own my decisions and get clear about what I wanted.

Marika Humphreys:

One of my past clients she struggled with being a people pleaser her entire life and as a result of her husband's cancer diagnosis, and he also is one of those people that's living with cancer. It's one of the things that she has really had to work on in order to maintain her mental and emotional stability while he copes with being a person who has a cancer diagnosis and still having a long life to live. Some of his behavior really triggers her people-pleasing tendencies, and then it has left her feeling frustrated and often doubting herself. So one of the things we worked on a lot together was helping her develop the skill of tending to her own emotional needs and trusting herself that she knew what she needed and that she could give that to herself. She didn't have to seek approval from others. So those are some examples of how this very situation, which may feel like a limitation, is actually an opportunity, if you choose to see it that way.

Marika Humphreys:

So I just want you to consider your life as it is right now, with all the constraints that you may have. What would it be like to fully accept this life? This is your life now. How could you accept every part of it so that you can then focus on making the most of it? Sometimes we do need to grieve before we can choose acceptance and make our peace with what our life is now. Our brains don't like change and we don't like uncertainty, but when we become a caregiver, it brings about a lot of change and it often includes a lot of uncertainty. So it is normal to want to wish that away to wish it were different. We want to wish we didn't have to make compromises, we didn't have to have difficult choices. We want to wish that we had less constraints, that things were easy. But I want you to just recognize that that is normal and it's because our brain just wants comfort, right, it wants things to go back to how they were.

Marika Humphreys:

So you may need to grieve your pre-caregiver life or some aspects of that life. How can you say goodbye to that? Take time to grieve it and let it go? I spent a whole podcast talking about the importance of acknowledging the silent losses that we experience as caregivers. It was episode 12. So if you want to go back and listen, I highly recommend it, because it's really important to acknowledge the feelings of loss and grief that we encounter, and sometimes it's about certain aspects of our life. Sometimes it's about big things. It can be all sorts of things, but acknowledging those feelings first, if you find yourself really sad or really angry about certain parts of your life, is important. Often we need to just sit with those emotions and let them be there before we can move forward. Just sit with those emotions and let them be there before we can move forward, because whenever we're resisting our current situation, we will keep ourselves stuck.

Marika Humphreys:

So you may need to grieve before you can find and choose to accept your life as it currently is. But when you do, when you choose to accept your life, then you can move forward to thinking about and how can I make the most of it? Acceptance alone won't make you happy and it won't change your reality. It won't change the constraints that you may face, but it will keep you from being stuck in that resistance or stuck in settling for less than right, because once we accept something, we can then move forward mentally to thinking about how can I make the most of this, what are my options? And as long as we're wanting our life to be different in some way, then we never get to that point. So acceptance is just a step moving forward to figuring out how you can be present with this life that you currently have, in this evolution of it or this iteration this season sometimes I like to call it and how can you make the most of it.

Marika Humphreys:

So I want to leave you with some questions to think about, because one of the best ways to shake things up in our brain and get our brain into thinking productively is to ask it good questions. So one question to ask yourself is who do I want to be right now? What kind of person do I want to be? And that question will get you thinking about what you want more to be like or what you may be struggling with right now. A lot of times when we ask ourselves who do I want to be, it can highlight the areas where we're struggling, but it's a good way to stay connected with what we value personally. Maybe you do want to be a good caregiver and not feel that resentment. Maybe you want to have more fulfillment in your life and you want to feel less hopeless.

Marika Humphreys:

So just ask yourself who do I want to be? And then the next question that follows, that is what do I need in order to be? That? That is going to tell you what you may be lacking, and again, it's just good to know. Okay, just ask yourself what do I need in order to be who I want to be?

Marika Humphreys:

Because the last question I want you to think about is then what's possible? Really, think about that. How often do we think about possibility over our limitations? It's very easy to see what we can't do. How often are you thinking about what is possible? What could you do? What is possible for your life right now, given what you face? How can you make the most of it? What is most important? You don't have to settle for a less than life, but your full life right now may look very different than it would have in the past, and it likely will look very different in the future. Right, this journey that you're on right now will likely change and continue to change in some way, because that is the one constant in life is change, right? So don't settle for being in a holding pattern waiting for that change. You can live fully now, and I want to encourage you to start thinking about what that might look like.

Marika Humphreys:

All right, I want to leave you with that. Hopefully some questions to just sit in. It's really good to just sometimes sit in the question and let our mind kind of go to work on it, while we're both in the foreground and also sometimes when we're sleeping in our subconscious. When we sit in questions, our mind will work on them, whether we're aware of that or not. All right, so that is what I'm going to leave you with today. If you have not left me a review, I would so much appreciate it. That would be amazing, and it helps others find the podcast. So please go leave me a review, let me know what you think of the podcast and share it with others if you feel like someone else could benefit. All right, my friends, I will see you next week.