Episode 237: From Oncology Waiting Rooms to Self-Care: A Caregiver's Year in Review

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Do you ever find yourself sitting in your loved ones waiting room wondering how you got there? Waiting to hear the rustle of the paper sitting on the outside of the door and the quick knock before the Dr walks in. The few seconds of silence you both have while you just wait. 

My husband’s 6 month oncology cycle is unfortunately December and July which means right around Christmas time we find ourselves in a medical center walking through the steps that get us ultimately to the oncologists office. Without a doubt we sit there waiting for an update wondering if our lives are going to change that day or if we continue as usual. As normal a life it can get when cancer is in the house with you. 

Without fail there is a moment when I reflect back and wonder how did I get here. 

Some years especially in the beginning it was in disbelief an actual question more in the tone of  - Wait how the hell did I get here? How did my life turn to this? Am I actually a caregiver? What the hell is happening?!?!

As I trudged along in my caregiving years that turned into knowing the likelihood was high that in each appointment we’d discuss the likelihood of him needing surgery or starting the countdown clock to him needing one. Or maybe it was going back after a surgery and I would find myself in those split seconds of nothingness thinking “How did I get here? How the hell did I just make it through a year of being heavy in caregiver mode? How did I get here after helping keep wounds clean, stop everything to help my husband recover from a cancer surgery, make it through a shit storm and find myself sitting there in a sterile room changed but somehow still the same? How did I get here?

This year however was an easier year and made this moment for me more complicated. I found myself sitting in his oncologists room finding myself asking the same question, How did I get here? This time it was filled with complicated emotions. Relief that he didn’t need much done medically but frustration that we haven’t figure out some side effects of cancer life that shape his quality of living. The unease that comes to me when I worry that the other shoe will drop every six months we go into a Drs office because after a decade of picking cancer out one surgery at a time we are watching and waiting. Questioning if I was present enough as his partner in life because being his partner in cancer was less challenging. Did I take things for granted this year because there was less of a threat of loosing him?

As I sat in the waiting room this December and I listened to other caregivers reassure the people they were there with while looking across the street 21 stories in the sky at the children’s hospitals windows decorated for Christmas I realized the whole week I was evaluating what worked in caregiving for me in reference to my husband but never on how I cared for myself.

I found it curious to fall into the trap most of us find ourselves in… focussing just on the person we care for sometimes at our own detriment.  I find it’s a natural thing for us to do because our being caregivers is solo dependent on our love on needing us. So of course looking back at a year and only looking at what you did for your loved one makes sense. 

As I caught myself not looking at the whole picture of my caregiving existence while sitting in an oncology waiting room I found that there was some resistance in wanting to go through that mental task while in public. As if If started having that conversation with myself there I would either be interrupted or would hit a thought just waiting to poke at my heart and I would start to cry. 

I of course had no time to decide on what to do next because my husband’s number was called and we jumped up to walk into an office and hear the words of one sentence that would dictate what the next six months of our lives would be. 

I walked around with that question the entire day. It came with me while we got lost trying to find another office because for some reason the hospital give you a physical address to go to but once you’re on campus all the directions are for names they’ve given the buildings instead. It stayed with me as we walked back to the car and I dropped my husband off at work. It hung out with me for days. I’d acknowledged that it was there and told it I’d get to it soon. 

Why was it so easy for me to list off in my head the things I thought went well and the things that could use a little work in the caregiving I gave to my husband but not in reviewing how I cared for myself? 

I realized it was because if something didn’t work in my caregiving for my husband I could see it as an opportunity to improve, learn, develop how I function as a caregiver. However, if I found something didn’t work in caring for myself which almost always means I didn’t do enough of something or I didn’t do it at all… then I would take that as a personal failure. 

How can I work all year long trying to support and educate other caregivers on how to care for themselves and find I didn’t do enough for myself?

The answer is easy… I’m human.

It’s just as easy for me to put my own needs aside for people I love as it is for any other caregiver because that is the type of personality most of us have. To be of service to someone that needs us even when we don’t want to, even when we hate it, even if it means we roll our identity outside of caregiving into a little tiny ball and hide it somewhere in side of ourselves - is what we naturally lean towards doing. 

I finally felt ready to give myself my own evaluation. Look at what worked and what didn’t in caring for myself. Because I know that as I age, as the stress continues to accumulate as the uncertainty that comes with living with cancer in the house piles up I will need to focus on myself more. 

So I laid down on the floor of my living room… because sometimes I need to see things in a different perspective to really think things through and I asked myself… what did you do for yourself this year?

As I began to look at my life over the past 12 months I realized things went remarkably well. I actually listened to my own advice. I made sure that even on the most difficult of days I found little pockets of time to claim for myself, recenter and release stress to be able to take on the day I was in. I really honed in on what I do in the mornings and the evenings to make sure I book marked my days with positivity and focus on caring for myself so that I could sleep well and start my day on a positive note. I set boundaries for myself that allowed me to prioritize these small segments of my day for myself. It also helped me set emotional and energetic boundaries so I didn’t spend the year trying to fix things for everyone and didn’t find myself overextended because I learned how to say no. Most importantly all of those things allowed me to really enjoy the end of the year with my family. Holidays were less stressful and I enjoyed more of the moments that mattered with my loved ones. 

Things went really well… but I wouldn’t have noticed it if I hadn’t taken the time to look back and I’m grateful that I was open to being uncomfortable in order to do that. 

Of course I then looked forward into this new year to see what goals I want to have for me personally, as a caregiver and as this person who is speaking to you right now. What really yelled out at me is this….

I want you to feel this way by next year.

I want you to be able to look back and say I was able to find time for myself no matter how chaotic my caregiving was each day. I found a way to not start my day feeling anxious as hell or go to sleep dreading the next day. I didn’t let people run all over me, said no to things I really couldn’t do and didn’t let my loved one’s mood be my mood. Most importantly I want you to say… I really love the end of the year. I didn’t start worrying about thanksgiving in September I didn’t hate the thought of holiday gatherings. I actually made the holiday fit the life I live with my loved one and even though some traditions had to be changed we enjoyed our time together. 

Because that’s the goal, isn’t it? Out of everything we do for our loved ones the goal is to help them live so we can enjoy life with them. We endure the hardships of caregiving because we want them in our lives.  I find we loose sight of that when we can’t handle everything that caregiving throws at us. Over time that just wears us down and we begin to interact with our loved ones only as their caregiver and not as their parent, child, spouse or partner that loves them. We miss the small moments that matter because we’re too busy cleaning up, trying to make doctors appointments or simply hating our lives. Most importantly we loose our ability to enjoy life with the people we care for because we’ve forgotten how to love ourselves. 

In a moment I’ll share what I learned from this but first I want you to know that this year I’d like to help you find that love again. I’d love to help you enjoy your life again. I want to show you it is possible to love your life in spite of caregiving. So every three months I’m going to work through it with you. 

First we’ll work on helping you find 5 minutes for yourself because you and I both know you can and starting small is the best way to make a bigger impact on your life. 

Then we’ll work on creating your own Morning and Evening routine so you can start off your days feeling more energetic and happier and let go of the shit storm of a day you had before going to bed. 

Over the summer we’ll work on boundaries because, let’s face it, we all need help with that. 

Plus working on boundary setting will help us with the topic of care for the end of year which is making the holidays fit your needs and the needs of your loved one so you can actually enjoy your time together. 

What I learned over the past two year is this. Even if you have the skills to help yourself like I do. Even though I have over a decade of experience of not just being a caregiver but also a yoga and meditation teacher I also need help in making my own care a priority. I learn by not only listening to how to do something but also thrive on having a framework in which to do it and sometimes even benefit from having someone to check in with throughout the year. So that is what I will offer you. Listen through these episodes and learn as you go. Add on a framework and more concrete way to learn through a mini course because you might not have the time or energy for anything big. Plus I know how frustrating it is to start a course that is so big you’ll never finish it. The goal is for you to not only learn how to do these four things over the course of the year but to actually implement them in your own life. Finally, if you thrive off of having someone holding you accountable and help you customize the things you learn for your own life while also helping move you through the process I plan on opening coaching options back up on a limited bases at the beginning of Spring. 

Here’s what I want you to remember… change in life takes work. It comes in starts and stops because as you and I both know life isn’t static, it’s always changing. 

If we don’t care for ourselves we not only put ourselves at risk for not being able to care for our loved ones but we also take away the privilege of enjoying time with our loved one while they’re with us. 

Let’s face it… in the end we won’t look back and smile while remembering all the times we angrily threw our parent’s bedding in the wash for the 4th time and then stomped around the house for 2 hours because we had to give them 3 baths in a day. 

We won’t feel warmth in our hearts when we remember how we saw our spouses just needed a hug but we were too angry/ anxious/ burnout to care. 

We won’t chuckle at the fact that we lashed out at our child when they spilled juice all over the table because having to clean up one more thing was what broke us. 

Those are the realities of caregiving, yes. The choice to react or respond is on us. Being able to find moments of joy alongside the pain is only possible if we understand the importance of enjoying this journey we are on while also maybe hating it at the same time. 

This time next year I want you to be able to look back and say… wow that year really sucked but I also had all these good moments. I had times I really hated that I had to be a caregiver but I have all these wonderful memories with the person I love. 

I want you to be able to say…

I might be a little worn out but I am so grateful to have been able to actually live and enjoy my life. 

If you’re ready for that come along with me here on this podcast. If you want more and faster results find the first course - Revive in 5 on the website Love Your Caregiving Life.com. Or if you want something in the middle go to the website and sign up for the newsletter to not only be sure you don’t miss an episode this year but also to get quick things you can immediately start to do for yourself. 

Let’s work towards having a year we can look back at and be proud of. 

Thanks for listening.