The Impact of Stories and Mindset on Caregiving

One of our main goals at Kapok is to go beyond the traditional caregiving narrative. This includes talking about more than just the practical and emotional challenges of caregiving. 

Why? 

Partly because there’s already so much content out there about those topics. 

It’s easy to find lists of the best products for any caregiving need, discussions about the symptoms of dementia, and articles on how to make sure the senior stays safe. 

Similarly, there are plenty of articles about when to say no, how to respond to caregiver guilt, and ways to improve your self-care. 

These aren’t just important topics – they’re crucial. 

But, they’re only not the whole picture. 

When I was a caregiver myself, I found that my mind was my most powerful tool (and sometimes my biggest downfall). Changing the way I thought and approached caregiving challenges was often more impactful than any practical steps I took.

So, in this piece, we’re talking about a crucial aspect of this – the impact of stories, mindset, and how we see the world. 

What Do I Mean? 

This topic comes from the idea that reality isn’t, well, real. 

More specifically, what we experience isn’t a true-to-life snapshot of an invisible world around us. Instead, everything is filtered through us.

The way our minds perceive, interpret, and predict inputs determines the reality we experience. Effectively, our minds are taking a huge array of stimuli and creating stories about what’s happening.

These processes are all incredibly important and we couldn’t function without them. But, they come with plenty of issues too, as the stories our minds are telling us aren’t always true. In fact, they’re normally at least a little untrue.  

Why We Need To Think About Stories

Talking about how our minds work isn’t just a theoretical exercise. 

The topic has many crucial real-world implications, some of which are directly relevant to caregivers. 

Perhaps the biggest issue is this – we’ve been taught to believe everything we think and feel. To take our perception of the world as reality, often without question.

This gets us into all sorts of problems because our brains often get things wrong. Of course they do, they’re trying to rapidly interpret information, often when it is still coming in.

The issue can be seen clearly in people who have been through trauma. For example, if you grew up in a house with a lot of yelling and door slamming, you’re likely to be on edge every time you hear a sudden bang. You might find that you feel afraid and your body tenses up, even though the situation now is very different.

Similarly, if you grew up with someone who was strongly passive-aggressive, you might find it difficult to trust what people say. You might default to second-guessing everyone, because your mind still thinks there’s an underlying story.

Those are just two examples.

If your past wasn’t traumatic, then inaccuracies are likely to be much more subtle and easier to miss.  

This is where things get problematic. Because, if we believe that everything we’re feeling and experiencing is ‘true’, then we don’t question it and don’t wonder about alternatives. And, that pattern creates many issues. 

How Stories Can Impact Caregivers

Some Caregivers Get Lost in The Negative

One of the best examples of this pattern is in the book Already Toast: Caregiving and Burnout in America (which I don’t recommend, at all).

While the author, Kate Washington, clearly had some rough experiences and makes good points in parts of her book – the writing is incredibly negative from start to finish. Kate makes little attempt to identify with the challenges her husband is facing and instead focuses on all she has lost.

Constantly.

She’s actually in a better position than most caregivers, as her family has the finances to hire full-time caregivers and she has regular access to respite care.

Yet, she complains on and on and on.

Don’t get me wrong. Caregiving is tough and there’s a huge amount of loss involved (seriously, I’ve walked the road and it was not pretty).

But, when you focus on it like this, the negative quickly becomes all you see.

And, even when caregiving is at its absolute worst, it’s never all negative. There are always some bright moments and places where you can find hope.

If you find the idea of hope and positive moments difficult, the book When Life Hits Hard by Russ Harris can be helpful. This focuses on an approach called Acceptance and Commitment Therapy, which bridges mindfulness principles with practical ones.

Some Caregivers Struggle with Guilt

Caregiver guilt is a big thing.

Many caregivers deal with this every day, often feeling like they should be doing much more and that they should always prioritize the person they’re supporting.

This is a big reason why so many caregivers struggle with self care. After all, it’s tough to support yourself well when you feel like you should always be second place.

Caregiver guilt comes from the stories we tell ourselves, often ones that are linked to our past. Somewhere we learned to put ourselves lower than others or think that we’re only valuable when we’re giving.

Such stories take time to unlearn, but you can do it.

Some Caregivers Become Martyrs

Another perception-related problem can be seen in caregiver martyr syndrome.

This is where caregivers start to pick up much more work than they need to, often doing everything possible for the senior, including things the senior can do for themselves.

Martyr caregivers are often unconsciously placing themselves in the victim position (and sometimes keeping themselves there). This can happen because they’re looking for affection or because their sense of identity is linked to serving others. 

Talking about martyr syndrome sometimes sounds like victim blaming, but that’s not the case at all. Instead, the issue is very real and it can have a dramatic impact. Plus, if this is what’s happening for you, then recognizing it will allow you to find a new path forward.

Conflicts Often Get Bigger

Another huge issue is conflict.

When you are strongly identified with your stories, it’s very difficult to see someone else’s perspective. You might not even realize that there is another legitimate way of seeing things.

This issue comes up frequently with debates about senior care and all the dramas surrounding siblings and caregiving.

For example:

• Aging parents who seem to do too much or refuse help are sometimes asserting their independence. Other times they might not be doing too much at all. Instead, you might be being overprotective or too controlling.
• Similarly, an older parent might be resistant to a specific idea (like assisted living) for reasons that you haven’t even considered.
• Siblings who don’t help with hands-on senior care typically have their own reasons. Some may need to prioritize their partners and children or perhaps their mental health. Others may disagree about the level and type of care that is required.     

What You Can Do

It’s clear that stories and world view have huge impacts on our experiences and how we interact with others. But, what do we do about this?

Talk to a Therapist

Therapy can be expensive, but it’s also incredibly valuable. 

Even a session or two can help you see the world in a new way and give you the building blocks to make progress on your own. 

Approaches like cognitive behavioral therapy are particularly powerful for helping with thinking patterns and your world view. A therapist may also be able to help you to identify and resolve cognitive distortions, ones that are making your situation more difficult.  

Choose Your Friends Wisely

Friends can have a huge impact on your life. Even if they’re not giving advice, their values and worldviews can influence yours. 

This can sometimes be helpful. Other times it’s incredibly frustrating. 

For example, I have a friend or two who tend to catastrophize, where they see the worst in most situations. But, I tend towards strength perspectives instead, looking for where I can find power and how I can make things better.

When I talk to these friends, they’ll often see my situation as much worse and more difficult than I do. 

Or, perhaps you’ve decided to keep caring for a difficult parent, despite all the challenges. Doing so is much harder if your friends are constantly telling you to leave, rather than supporting you where you are. 

Examine Your Situation

Another approach is to step back and weigh up the situation. 

Try being curious here. So, rather than sticking with your immediate perspective of the situation, be curious about other ways to view things. 

What other stories are there? 

For example, some caregivers end up strongly disempowered, where they feel like the current situation is awful and unresolvable. Yet, many such caregivers are doing much more than they need to.

Caregivers in this situation sometimes need to step back, to recognize that their responsibility only extends so far.  

Consider Self-Help

 Many self-help books, podcasts, and speakers focus on stories. 

Tony Robbins is a fantastic example of this. He often talks about the power of how we see the world, including the way that our perception defines our reality.

He also talks about how you can reframe and improve your situation.

Some of the self-help books we’ve highlighted at Kapok highlight this area too, like The Happiness Trap (which, among other things, suggests that our ongoing hunt for happiness is actually making us miserable).

Self-help is powerful, giving you plenty of information at your fingertips, often for a low price. 

But, you need to be very careful with self-help.

Authors don’t need to be qualified to write a self-help book. Nor do they need to be right. Some self-help books even contain concerning information or are little more than scams.

It can help to see self-help books, teachers, and articles as theories. They may be right and helpful for your life or they may not be. 

Final Thoughts

Most caregiving sites don’t talk much about world views and stories, but perhaps they should. 

The way we see the world impacts so much, including our pleasure versus pain and where we struggle. This is especially true in the midst of a difficult situation like caregiving. The topic keeps coming up in other conversations too, like when we talk about difficult parents or dealing with your siblings. 

Sometimes you need to take a few steps back and re-examine your base assumptions. Even just talking to a therapist or a non-invested third party could help you see things in a different (and perhaps more powerful) way.