How Was I Going to Put Care into Myself? My Journey Out of Caregiver Fatigue.

I remember the first time someone mentioned the term “Caregiving Fatigue” to me. It was after a social media post I made where I was sharing a vulnerable moment of yelling at my husband – who was completely paralyzed – for going to the bathroom without me having help. I shared this moment because I had a very public story, and caregivers often told me, “They wish they could be as together as I was.” It was important to share my weaknesses to make sure all caregivers knew I was in the trenches with them. 

I thought to myself, “I have chronic fatigue in every aspect of life.” I suppose caregiving is at the root, so I started deep diving. I felt so disappointed when the information I read again and again pointed out that the biggest way to combat caregiver fatigue was to put love and care into yourself. 

A quote came to mind, “I wish my mental health was good enough to do what is good for my mental health.” How, in the reality I was drowning in, was I going to put care into myself? My husband has one of the worst illnesses and on any given day his demands would keep me from peeing or even having a moment to sit, how am I supposed to prioritize caring for myself when his lungs are failing, he can’t move a muscle, needs plugs cleared from his lungs consistently, and he has 10 open wounds (to just scratch the surface)?

Yes, I needed to eat and drink water, the basics, that I did indeed often neglect to do. Flossing my teeth was never on my mind even as often as my dentist told me my gums were in bad shape. 

Yes, I needed nourishing foods and more than coffee in the mornings to sustain me.

Yes, I needed all of these things, and much more, but I wasn’t even in a good enough state to do these very basic things. 

Instead, I needed something to refuel my soul and that was when I found my way to creativity. 

Stick Together, by Hope Ann Cross

Whether you relate to spoon theory, which demonstrates the energy limitations one has in imagining how many spoons one has available (how much energy you have) and what happens when you run out of spoons, or the notion that you can’t pour from an empty cup, it’s more than simply brushing your teeth and drinking water that is needed to add more spoons or fill up your cup. 

I couldn’t practice self-care until I practiced soul care. I started spending more time in nature writing poems and drawing childlike paintings of the flowers and birds that were in my yard, I started weaving with the dried grasses and flowers, and splattered paint messily on canvases. Never concerned with the outcome, I focused more on how this filled my soul, my cup, and my drawer full of spoons!

Once I found myself having some inspiration sprinkled in my day-to-day in between the demands of caregiving, I found myself having the energy to make time for me and my needs. I was able to crawl myself out of the dark hole I was in where I didn’t think my needs were worthy compared to my husband's. 

Around this time, I got back into journaling as a creative act, and found myself writing any minute I got the chance to pick up my pen. I started a gratitude journal, an art journal, a poetry journal, and a journal to dump the tangles of thoughts – I journaled my shame and my wins. This was when things started to click for me as it was suddenly a place to transmute my pain and stress from caregiving into something that could be helpful for others in the future. 

Thankfully, there was a feedback loop happening during this time where I could see the results of my compassion for my husband growing with the more care I put into myself. I could see it working. This didn't mean I didn’t still have my meltdowns and my shame, but that now I had things set up to support me so that it didn’t shut me down from eating, drinking, or brushing my teeth. 

As a caregiver of someone who was very sick, I can understand questioning if any of this “self-care” is even necessary, but soul care/self-care is where the difference between sustainable caregiving and burnout lies. If you find yourself in a place where you don’t know where to even begin putting care back into yourself, find something that would light up your soul, maybe it’s photography, learning a new recipe, starting a window garden, or maybe creativity will be your ticket to soul wellness. 

Whatever you find that does fill your cup, hear me when I say you are so worthy of the time and energy being poured back into you, and may you see the same feedback loop as I did and recognize how you are a better caregiver when you truly create a little space to care for you. Start small, and as many times as you need until you find what works for you. You are so worthy of the same care and love you pour into your person. 

One more time for those who need it: YOU are so worthy of the same care and love you pour into your person. 

Unwinding by Sharecare has partnered with the Rosalind Carter Institute to create this free Caregiver Stress Mini Course. The course roadmap is quick and easy to navigate, and the female voiceover is calm and reassuring. The entire course is 41 minutes in total, and is organized into 7 digestible sections that vary in length from 4-7 minutes each. Some listeners might follow the course as mapped out in one session, while others may prefer to skip around as their life’s schedule permits. We have been listening and re-listening to this course and we highly recommend it.