Episode 1: Caregiver Connection Podcast

Listen on Apple Podcasts Listen on Spotify

Welcome

I hope that by relating my experiences as a caregiver you will learn that you are not alone in what you are going through. We are all experiencing similar emotions and circumstances but oftentimes feel that we can’t or shouldn’t talk about them. Sometimes we don’t have the energy to talk about them and unfortunately over time we learn that we aren’t always understood when we do try to tell people how we feel. 

So difficult for caregivers to share what they’re going through

It takes a certain amount of vulnerability to say that you are exhausted, overwhelmed and neglected when you aren’t the one that is sick and it takes a certain amount of strength to let those things out. That usually requires energy caregivers don’t even have. The more we hold in these things the lonelier we feel. I hope some of my stories allow you to understand that it’s not wrong to have the emotions we feel towards caregiving at anytime and that you can laugh and cry along with me.

Why I am a caregiver

My husband was diagnosed with Papillary Thyroid cancer in 2013. He continues to live with the cancer and has his own ups and downs navigating life with an incurable disease. I have walked alongside him while we both make sense of life with cancer and it has been difficult for me to see him go through everything he has had to endure. I hate that my love can’t cure him!

But the podcast and blog aren’t about him… it’s about all of us who take care of a loved one and the things that we go through. That’s hard to say. It’s hard to make this about my experiences with cancer from the outside because my focus is always on him.

Beginning life as a caregiver

The first few years navigating life with someone who needed more of me, combined with the fear, anxiety, stress, guilt and anger was wearing me out. Looking back at it now the first visit with the oncologist gave us the roadmap for his care but I wasn’t ever offered any resources. Of course when I learned that my husbands life was threatened by a disease I didn’t first think … 

How can I take care of myself while I go through this! 

It wasn’t - how does that change life for me? 

As great as the first round of nurses and doctors were for my husband it would have been great if even a nurse pulled me to the side and said - You need to take care of yourself. This will be a long road for both of you. 

At least hand me a pamphlet! I’m pretty sure that if someone handed me a picture of a worn out, woman with bags and circles under her eyes, messed up hair with no life in her eyes with just a caption - This could be you as a caregiver - it would have piqued my interest.

Trying to figure things out

Very quickly I fell into many roles I was not ready for. I became the researcher, the scheduler, the counselor, the nutritionist, and most importantly the gatekeeper. My husband wanted to focus on not dying and didn’t want to know anything he didn’t need to (hello google). Quite frankly he didn’t want to entertain anyone who would act like he was dying. 

I became these things without even thinking about it. I did it because - for the type of person I am - there was no other logical reaction and because I wanted to do everything I could. I did these things, however, while still trying to keep life as normal as possible for our daughter and our house, for our friends, for his co-workers and the members of my yoga classes. There was already too much vulnerability in the house - I felt if I was also vulnerable, if I didn’t try to hold things together my whole world would fall apart.

The loneliness of caregiving

Feeling alone in this all was extremely hard for me. My husband and I were going through extremely different things and even though we were both navigating cancer together it was from different perspectives. We lost our ability to commiserate in the pain. We didn’t have the jokes we would make on how much things sucked. We weren’t seeing things through the same lens. 

I wasn’t trying not to die.

I didn’t know anyone else that was also caring for someone with cancer. My friends and family were great about being there to offer support but they also couldn’t truly understand my view on this situation. I couldn’t really talk to them about everything I needed to.

When you aren’t the one who needs care

No matter what I was feeling I wasn’t the one that had cancer. Cancer trumps every complaint in a conversation. So I kept it all to myself and that just made me feel alone and disconnected.

It’s really hard to say “why me” to a friend when you don’t have cancer and your spouse does. It’s hard to talk about how hard the experience has been for you when you aren’t the one that is sick. Those are all valid thoughts for us to have yet it’s hard to voice them and I find the more I keep things inside the more they grow and the more misunderstood I feel.

That’s why this podcast and blog exist. I’m going to say the things I have to deal with - thoughts, experiences, relationships - that have come across my path during my time as a caregiver.

I invite you to join in and laugh, cry, get angry and feel all the feels with me. I’m not going to sugar coat things. I’m not going to tell you it will all be ok.

What I will say is you are not alone and yes you can find the strength to do this.

Thank you for listening to and supporting the podcast. If you enjoyed today’s show, please share it with someone that needs to hear it, another caregiver or someone you'd like to understand caregiving a little bit more.

I would be extremely grateful if you would consider taking a minute to leave an honest review and rating for the show in iTunes. They’re helpful when it comes to reaching other caregivers and I read each and every one of them personally!