Climbing the Emotional Caregiving Mountain

by Jennifer King

You keep putting one foot in front of the other, and then one day you look back and you’ve climbed a mountain. – Tom Hiddleston

One day, several years ago now, I was in the grocery store feeling totally overwhelmed and exhausted. I had just picked up some medicine from the pharmacy for my son, and I was sort of walking aimlessly with a long list of grocery items we needed. Then suddenly I came to a complete stop in the middle of an aisle.

woman on top of mountainI just felt I could not go on anymore. I stood there for a few moments. My head hanging down, my eyes closed. I slowly opened my eyes and I saw my feet and I thought, just keep putting one foot in front of the other. That’s all I need to do. Those words helped me get through that grocery visit and so much more throughout the years since.

I recently ran across the above quote by Tom Hiddleston and I realized I’ve been climbing a mountain all these years and didn’t even know it. It gave me a sense of accomplishment and a moment to pause and reflect on how far we have come.

Circular Emotions

I have been caregiving for 13 years now. My son is severely disabled and medically complex with an unknown type of mitochondrial disease. As hard as things have been, and as hard as they are now, they will only continue to get harder because this disease will continue to progress. I remember when he was a year old rocking him to sleep for his nap. He was so tiny, and I just wanted to wrap my arms around him and protect him from all that was to come. Telling myself, “as hard as this is now, it will only get harder.” And it has.

I have been through many emotional ups and downs these past 13 years. Periods of relative stability, periods of complete chaos. Periods of grief, pain, anger, fear, joy, love, happiness, contentment. Periods of acceptance. Periods of rebellion. From appreciating how lucky I am to experience this incredible journey we are on, to wondering when I will get my life back.

And what does “my life” even look like now? Would I even know what to do with myself after being totally devoted and self-sacrificing to my son for so long?

What I have realized though is that the emotional journey of caregiving is circular, and seemingly, at least for me, the circles extend out wider with each passing year. This journey is not linear. We do not pass through one stage, enter the next and leave the previous one completely behind. We circle through all stages, all emotions, again and again.

Some stages I recognize and have become very familiar. Other stages are new and alien, knocking me down and taking my breath away. I have much longer periods of acceptance and contentment than I used to have. I think, “okay, I’ve got this, I know how to handle this.” Then out of nowhere, rebellion sneaks back in and I lose myself in the grief and pain all over again. And unfortunately, while there are longer periods of contentment and acceptance as the years pass, when the rebellion stage hits, it seems to hit harder and deeper than before.

Caregiving is a complex emotional journey that can only be truly understood by experiencing it. Outsiders would be shocked by the thoughts and feelings caregivers have. We wonder how much longer we can keep doing this, then feel guilty because the only way “this” comes to an end is through the demise of our child. And how terrible that makes us feel, as it is the absolute last thing we want to happen. And yet, we can’t help but feel we want our life back. We are only human, after all.

We are running a marathon intermixed with sprints with no end in sight. We are exhausted in our bones, our souls, to the very essence of our being.

The love, though. The love is amazing. So is the joy and happiness. I have come to the realization that there are no words, nor is there any form of measurement that can accurately describe the love I have for my son. It is a love beyond words and measure. I do feel incredibly lucky to be living this life. To experience this amazing journey. When my son smiles, we say “all is right in the world.” And he smiles a lot. We are lucky with that. He’s never said a word, but he has a beautiful smile and an infectious laugh. It makes my heart sing. There is nothing else like it.

Mindfulness

One way I have chosen to manage the emotional journey of caregiving is to practice mindfulness. I meditate very early every morning before anyone else is awake and attempt to be in the present moment throughout the day, particularly when I am providing direct hands-on care to my son. This helps me better deal with the wide-ranging emotions that pop up. It helps slow things down and makes me more patient while I provide care. It gives me a stronger source of resilience and helps me to be better able to respond to situations instead of reacting to them. It has been a lifesaver for me.

Part of this journey includes getting knocked down by our emotions. A lot. I have found that through the years when I have gotten knocked down, I quickly get up, dust myself off, and resume my normal activities as soon as possible. And most of the time there is no choice. My child’s needs still need to be met.

What I am finding now is that I think too many times I have picked myself up too quickly and not let myself really feel the emotions involved. Once I get knocked down now, I try to let myself stay there for a few moments. I take a look around and really feel what I am feeling and how it feels in my body and get a better understanding of it before picking myself up, dusting myself off, and going on as before.

I think this is a healthier way of dealing with emotions than rushing through them hurriedly, thinking we will deal with them later, or that they don’t matter. Otherwise, when all those stuffed up emotions do catch up with us, we will be knocked down all the harder the next time. Being able to recognize what we are feeling and observe it and really let ourselves feel it helps to move on from it quicker and in a healthier way. It is not an easy thing to do, and sometimes we literally do not have the time, but bringing awareness to our emotions at any level is helpful.

Caregiving is one of the hardest jobs there is. It is relentless and difficult and rewarding, all at the same time. Emotions range from the highest of highs, to the lowest of lows, and everywhere in between, often just within moments of each other.

But no matter how hard this journey is, we keep doing it. We keep going. When it is our child, we have no choice. We will go to the ends of the earth and the outer reaches of the universe to take care of our child. And along the way we will experience every emotion imaginable and some unimaginable. It’s all part of the journey. Embrace it.

Author: Jennifer King • Date: 3/10/2020
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