Sarah Koepke
Excel, bell. Pause. Excel, bell. I’d called my spouse, Mark, from a training I was attending in an adjacent state, and he just kept repeating those same two words. Clearly something was off, but I had no idea what.
Like a lot of medical diagnoses, until something impacts you or a loved one directly, you may never have heard the term before. Such is the case with aphasia, which is what Mark lives with permanently since it turned out his speech difficulties were the result of a major stroke affecting the left side of his brain. But what I really want to say is that aphasia is something we live with permanently, since that’s the part I have realized I’ve minimized since the stroke occurred five years ago. In re-reading an article I wrote recently, I noticed that while I had done a decent job describing aphasia and how it affects Mark, I’d failed to acknowledge my own experience; that part where I became a caregiver without having applied for the job. It was so starkly funny/not funny that I almost started laughing the fully body kind of laugh that ends in sobbing because I realized how precisely it summed up the caregiver role. Within the story, I was close to invisible, and so this piece is a companion to the earlier one.
As caregivers, we scurry around behind the scenes, often single-handedly orchestrating the day-to-day of our loved ones to keep them safe, while we kick the can of our own needs down the road, at best, or subjugate them completely, at worst. It full-out surprised me to see my limited existence on the pages of my article, and that was a message I first reluctantly received, and then, vowed to remedy ASAP. I’d quite literally lost my voice and myself, and isn’t that just what so often happens to caregivers if we don’t check in with ourselves each day in the very same manner we do with the loved ones we care for? The question then becomes, “Who’s caring for the caregiver?”
Before I delve more deeply into that, though, I want to provide some context by describing our world of aphasia (uh-fay-zhuh), this odd word that sounds like a fancy dessert. Simply put, aphasia is the loss of ability to find words (expressive) or process incoming information (receptive) as a result of damage to the brain. In Mark’s case, the stroke caused both expressive and receptive aphasia. According to the National Aphasia Association, more than 2 million people in the United States have aphasia, and “a person with aphasia may have difficulty retrieving words and names, but the person’s intelligence is basically intact…it is the ability to access ideas ad thoughts through language – not the ideas and thoughts themselves – that is disrupted” (aphasia.org).
For Mark, aphasia means, among other things, he tends to reverse or confuse pronouns, family relationships, directions, days, time, holidays, and other daily experiences. The expressive aphasia creates word-finding difficulty, so he might say, “It’s upstairs” and means it is in the basement. He tells me at bedtime, “I’ll do that today” and means tomorrow. Sometimes he catches himself. Sometimes he does not.
So, what does this mean as a caregiver? It means being a constant translator of a foreign language for which I took no preparatory classes. I need to translate first in my own brain, trying to make sure I understand what Mark really is trying to convey, and then translate that to nurses, doctors, friends, family members, and complete strangers. It means that in a culture fueled by caffeine and proud of its productivity, I need to slow wayyyyyy down and tune in. It means that my introverted nature is routinely uncomfortable. It means filling the role of nurse, “drug dealer” (as one doctor likes to refer to my doling out of many required medications), occasional chauffeur, scheduling department, patient advocate, insurance navigator, public relations consultant (as I deal with what he does and doesn’t want shared and with whom), cheerleader, and doctor appointment companion. It means, like most people in caregiving roles, experiencing routine physical, spiritual, and mental exhaustion.
My husband is not a burden. I am fortunate that I can be of assistance to him, and he would do the same for me. But it is important to be honest about it, and I aim to shine light on the reality of caregiving situations. That reality is that while he lives with his disability 24/7, so do I. It is always on my mind because I need to remain vigilant about medications, changes in his diet, whether or not he’s bruising, weekly blood draws, appointments, whether the cognitive impact of his stroke has meant today’s a day he’s left the stove burners on or the dog outside, or a car door open in the rain, and so on.
As for anyone in a caregiving role, it’s a lot. I needed to admit that to myself in order to start to examine my own situation within this context and determine what steps to take next. Essentially, I needed to figure out how to begin to adjust and find peace because that process was hijacked early on by an insistent passenger called survival. I have continued moving forward by honoring my own needs and working, daily, to provide myself with at least the same level of care I give to my husband.
Mark likens his days to a mental marathon as he works to understand the usage of and distinction between words such as before and after. Breaks need to be taken throughout the day to rest the brain, and his aphasia becomes more apparent in the evening, I fade as the day goes on, as well, and I am learning to take my own breaks where I can zone out with a podcast or movie, go for a long walk, or my new personal favorite--do absolutely nothing. That’s a huge challenge after a lifetime of focusing on “doing.” Lately, I have spent time intentionally doing new things of interest like starting to learn Italian and working on challenging crossword puzzles. I nourish my body with organic food when I can and nourish my spirit with yoga and meditation in the community. I’ve found Yoga Nidra, or yogic sleep, to be incredibly restful and rejuvenating. It is a passive state that has been proven to be beneficial and healing and has been used for treatment of post-traumatic stress disorder in veterans. It seems fair to think of being thrust into caregiving as having a PTSD component that warrants attention. I also make sure to take care of my own medical appointments, treat myself to experiences that help reduce stress, get plenty of sleep, and I spend more time with friends than ever before.
Those are the ways I survive while I move toward thriving. It is a work in progress, but I have finally figured out the importance of self-caregiving in addition to caregiving for my husband. I hear it is popular these days to talk about the “new normal.” I like to think of it as our “new not-so-normal.” Every day brings unique challenges, and let’s be real: We’d just like our old lives back, thank you very much. It seems I reside in this neither here nor there place while continually trying to adjust to circumstances. But I do keep moving forward, letting go of what I can, caring for myself and Mark as I am able, and finding some measure of contentment…with fewer words, yet greater understanding.