Episode 255 : The Power of Personal Choices in Caregiving Relationships

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Episode Transcript

The other day I was asked if my husband would go to a cancer conference with me and my quick answer back made me very aware for maybe the first time how much our relationship works in spite of how it may look from the outside. 

Let’s talk about not giving a …. Not caring what other people think about how your caregiving relationship looks.

The other day I was having a conversation with someone about the possibility of presenting at a conference I presented at last year. While talking with them I was asked if I thought my husband would come along since it is focussed on cancer, which he has.

I very firmly and maybe too quickly said “no, most likely not” and then continued to share with them how interesting it was to get asked while at the conference last year if or why my husband wasn’t there with me.

There are many reasons I can give why he didn’t or won’t go but the only important one is that he doesn’t want to and as his wife, in this specific instance, I completely support that. Which seemed to get some interesting reactions when that was my answer. 

Interestingly enough this conference was the first time I felt my caregiving relationship was being judged or at least questioned by complete strangers, after over a decade of being a caregiver.

How you function as a caregiver and the relationship lines you redraw when you being to care for someone you love is only your business. Let’s start with that fact. You have to do what works for you and know that when it stops working, just like in any relationship, you have to address the problem and try to fix it. That in itself is a bigger topic for a different episode, 

But just to set some ground rules,  no caregiver should feel they should have a specific type of relationship with the person they care for and no one should feel they have the right to judge that relationship. 

That is easier said than done because once you become a caregiver you almost always struggle to figure out what that relationship change needs to be and a lot of the time you figure it out through trial and error. 

And then even when you feel you’ve found your sweet spot in knowing how to live in this new caregiving world of yours, it doesn’t take more than a small comment to question if you’re doing things the “right’ way because caregiving puts you in an almost constant state of vulnerability. At almost any moment none of us really knows what we’re doing and it doesn’t take much to reveal the cracks. 

There’s no book that has a one size fits all plan for us. Everyone is always giving you suggestions and at some point you find yourself constantly seeking validation from other people that you’re doing things the right way or how to make things better. Mostly because you don’t really know what the “right” way is and have no more energy to try to figure it out. 

When you become a caregiver you find yourself lost in a sea of information you never wished to know and trying to define who you are now that your life is changed.

So you try to piece together your relationship with your loved one and you are hit in the face with the fact you have to come to terms that you are grieving the loss of the relationship you used to have with them while simultaneously trying to stay connected while also searching for ways to help them not die. 

Maybe your pre caregiving relationship with your spouse or parent was solid and fairly healthy and it can withstand the titanic pressure caregiving puts on it or it wasn’t good to begin with and it quickly starts to crumble. Either way you are different, they’re different and your relationship has to be reconfigured. Because everything has changed 

And to continue to try to live the “way things were” only puts additional stress on your relationship with the person you care for because striving to have things back to whatever normal was before will only bring you sadness and regret.

So what you and I constantly work on is finding ways to stay connected with the people we love and care for because it’s very easy for everything in our lives to unravel when we don’t continue to foster the connections that are most meaningful to us. 

As much as we’d like to follow someone else’s example, find tips on what worked for other caregivers or even find a book or website that lays it all out for us -  it won’t help at all if you don’t understand that the perfect relationship with your loved one is the one that works for the both of you. That keeps the two of you connected through what could be the most difficult part of your lives and that won’t fit the mold of another person’s relationship because we are all different. The reason’s we are caregivers are different and require different levels of caregiving from us. 

Yes, finding ourselves, working on our identities now that we are caregivers, the ways we can care for ourselves can be the same for all caregivers because they address universal caregiver problems we all share. However, your relationship can not be replicated or copied.

Sometimes caregivers will piece together ideas from the relationships they see in other caregiver partnerships, by what they see online, in movies and what non caregiving relationships look like. But none of that matters because it isn’t based on who you are, your past history between you and your loved one or honestly the million other ways you are different from any other caregiver. 

So when someone at a cancer conference asks me why my husband isn’t there with me I know that a big part of the question comes from them wanting to understand our relationship and why I don’t fit in the mold they might have of what a cancer couple should look like. TO be honest most people there were with the person they care for. So I was doing things a little differently than the rest. I know that when I make different life choices it can make people uncomfortable because I present them with the reality that they also could have and can make different choices themselves. 

It’s the same as when I had my daughter after years of infertility and people with more than one child couldn’t get over the fact that my family was perfect and fulfilled with the three of us. That we didn’t have the need for more children. I even have had people in the past try to explain to me why my daughter needed another brother or sister and it was mostly because it made them uncomfortable that I made different life choices AND I didn’t care what anyone thought about it. I couldn’t be swayed because I was firm in this one life choice and didn’t care what anyone else’s family looked like. 

Mine was perfect as it was.  

So maybe me being at the conference made some people question why if I wasn’t a cancer patient I was there, although my name tag has a huge caregiver sticker on it. 

Or maybe they were wondering why THEY had to come along when they didn’t want to be there either. 

I did sometimes feel the urge to explain more and tell them his story but never did. It wasn’t necessary and it was really none of their business why he didn’t come to the conference with me. 

This questioning did however, make me feel closer to him.  

I always find that if something causes me to become defensive about a topic or ideal that I really identify with it helps me understand more about myself. In this weekend I realized that the construct of my caregiving relationship has never been challenged. But at this conference, every time I refused to tell them my husband’s cancer story and why he wasn’t there and replaced it with “he didn’t want to come” I realized how strong our relationship really is because the simple sentence, he isn’t here because he doesn’t want to be here “ says so much about us. 

It means we don’t force each other to do things that we don’t really want to do when they aren’t important to be done. Does he ever want to go in for an MRI, no. but it’s important. He doesn’t want to come to a cancer conference with me… no problem. 

It made me realize that cancer could have possibly made our relationship stronger because learning how to recalibrate our roles every time there is a change in his treatments, or how he feels has allowed us to continue to support each other in the best way possible. 

Most importantly we have always fought to stay friends, show our love and respect each other’s wishes while still having our own separate personalities, realities and opinions.  

Your relationship has to work with who you are, who they are and how the two of you can connect. And when you figure out how to do that you have to keep a loose hold on what works because as soon as something changes you will most likely have to figure things out again. 

It is a lot of work…  which I point out to the people who tell me I’m lucky to have this relationship with my husband in spite of cancer being in the middle of it. Your relationship with your loved one is based on the effort you both put into it. Not because of luck or being unlucky. Caregiving is a lot of work and just like the reason why we dedicate so much of our lives to care for our loved one I feel enjoying time with them is just as important and so I put in the work and so does he. 

Luck has nothing to do with it. And our relationship has been able to thrive because we don’t care a bit about how it holds up to other people’s standards. We don’t care how other couples work cancer or other diseases into their relationships.

What we did was figure out how to make things work for us. How to allow space for love and happiness even when sadness and fear creep into the corners of our lives. 

We can’t go on trying to make a relationship that will dodge any judgment from our family and friends. We have to do things the way we feel is right for us and the person we care for because in the end how we cultivate our relationships is how we get through caregiving. 

That isn’t an easy tag for anyone to do. However, your relationship with the loved one you care for affects so much of your life. Good or bad. 

So my relationship advice is this… try your best not to give a crap about what other people will say. Do what works for the two of you and makes both of you happy. And let go of trying to be like anyone else. 

It’s not an easy task. But it’s worth the work.

Thanks for listening.