Episode 245: The Unseen Caregiver Struggle

Listen on Apple Podcasts Listen on Spotify

Episode Transcript

I have the opportunity to live an alternative life. 

Like the alternative time lines they’ve been trying to get us to buy into in super hero movies. I could be a different Charlotte while the Charlotte that is speaking to you right now continues to exist. 

Let’s talk about our caregiver stories

I’ll be moving soon to a place where I will be relatively unknown. It’s a big change, but change is life and I have the opportunity to allow myself to become a new person so to speak. 

I realized the other day that I could decide not to tell people I’m a caregiver. Exist in a world where none of my conversations have anything to do with cancer. Just simply be Charlotte from Chicago. 

My husband will keep his Dr in Chicago but I can just let people believe we jet set to the city multiple times a year just because. No one needs to know. 

That’s the thing. No one does. 

I don’t actually meet a new person and instantly say Hi my name is Charlotte and I’m a caregiver for my husband who’s had thyroid cancer for over a decade. How are you?

In fact as I meet new people I don’t really tell them unless I come to know them well enough for it to be part of a conversation with them. Sometimes meeting someone new and having to decide what parts of your caregiving life you actually have the energy to share is tiring.

Then you have those moments where you mention taking your husband in for scans or maybe announcing his disease is needed in order for them to understand what your talking about and you just blurt out “oh my husband has cancer” and then try to continue your thought to avoid the expression change on their face. The - you poor thing look or the holy shit I don’t know what to do with that information look or the I’m going to look like I want to cry look. 

There’s nothing wrong with people having their own reactions in finding out someone has a disease that is normally equated with death or is associated with words that liken it to a herculean battle. Just sometimes, as a caregiver, I’d like to skip past that part because you never know what reaction you’ll get from the person that’s standing in front of you. In fact I’ve even actually had people I don’t know too well but well enough to tell them about my husband’s diagnosis and they’ve become angry with me because I didn’t tell them earlier. 

So getting through that moment as quickly as possible is usually the best. 

But this time… I could live as an alternative Charlotte. 

A non caregiver Charlotte. No caregiver worries. No Cancer to even speak of. 

In fact the reason why this even came to mind is because when processing this move it felt burdensome to think of explaining my existence to other people. Because when you are in a caregiving relationship you aren’t normal. You might be like 52 other million people in this country but for some reason when you’re a caregiver you can feel like you’re the odd person out.

My caregiving isn’t carefree so it would be living outwardly in opposition to the truth I know. We’re on the ride up that caregiver rollercoaster edging towards the top and I suspect by the end of this year I’ll find myself at the top looking down at the drop. Having a split second when I just want to jump off.

In a way I’m in my nesting mode. Creatively thinking through things that can be done now to prepare us for any surgeries or new treatments that might be coming in the near future. 

So it made me wonder. What would life be like if I wasn’t a caregiver while moving to a new state?

I could be myself minus the caregiver. When people try to get to know me I can withhold the cancer part of my life. In fact I could make it a practice of leaving cancer at home and not thinking of it at all whenever I leave my front door.

Let me ask you… does the thought of that feel exciting or uncomfortable for you right now?

Take a moment to dream with me. I can walk around town as if I didn’t have a care in the world. Smile all the time. Enjoy tastes, smells and colors now that my senses aren’t dulled by the weight of being a caregiver. I can dance my way down a sidewalk. Birds would come to sit on my shoulder and sing with me. Wildlife would emerge and accompany me along the way. (Oh wait that’s a movie)

It’s actually impossible for me to envision a version of me without caregiving as part of it. If you listened to episode 240 you know I feel caregiving has shaped me into the person I am and maybe even for the better in some ways. 

I can’t distance myself from my life as a caregiver because it is who I am. 

Some of us see caregiving as something we just do. But you won’t be able to see life differently and make room for joy to come back in until you can say caregiving is part of who you are.

Which mindset are you in right now? Is caregiving something you just do for someone or is it part of who you are?

For me, there’s no real way to leave cancer at the door. It is what informs what groceries I buy, how far in the future I’ll allow myself to plan for, and why and how I check in with my husband throughout the day. It isn’t separate. I do all these things as a spouse and a friend and as a parent. It’s as if my whole being was unraveled the day he was diagnosed and woven back together with a new caregiving thread added. I can’t just pull it out without taking all of me apart. 

Moving is harder for me because of that. 

I have to problem solve differently. Instead of only worrying about the colors I want the walls in the new bathroom to be I also have to work on us deciding if we stay with the current oncologist or find a new one in our new state. I feel the pressure to set up all his new patient appointments just in case he needs a regular doctor soon. I stop myself from letting the administrator of his office know about his disease and what he might need from time to time. Some days I’ll spiral and wonder how exactly do I coordinate a surgery in a different state and how long would I have to find housing for before bringing him back home. Or do I maybe drive him the ten hours back? (Actually if you have experience with this I’d love to know)

All my decision and problem solving during a move are put through the cancer lens. 

Now how much of our caregiving do we really need to share? That’s really up to you. I think if you aren’t meeting new people all the time it isn’t a thing you might ever think of. But are there people in your life that could benefit from or should be able to understand more about your caregiving? 

I have found from speaking with caregivers that some of us live as caregivers, some of us do as caregivers and others don’t understand they are caregivers. 

Some of us have people who support our caregiving, others just know that we are caregivers and others don’t have a clue of what a caregiver is.

We live with a story of who we are in our minds and each day we add a new chapter.

How willing are you to let people in to see who you are? Because we forget that others don’t have access to our story which leaves them to make up their own. 

When we don’t share with others that we are caregivers we do so for many reasons. Maybe it’s because you don’t feel like going through explaining who you are, or you don’t think they’ll care or possibly because it huts so much to even be a caregiver right now you know you’ll start to cry and slowly start to fall apart in front of this person, worried of what they’d think of you and scared that you’d never be able to put yourself back together again.

Or maybe you hate the way a person changes their expression when you tell them. Or you’ve heard the words “I’m so sorry” too many times. 

Being confronted with the possibility of being someone different was enough for me to consider who I who I actually am. Do I need to add new chapters to the story of who I believe I am? Are there adventures I’ve been on that haven’t been recorded? Are there trials and tests of caregiving strength I haven’t added.?

There is no clean end to this episode. No moral of the story no important message to share. 

Just a question, really… Is the story you’re living the same as the one that runs in your head?

Thanks for listening.