Isabella Zini - A Perspective on Emotions as a Caregiver to my Mother
In May 2019, my mother, Heather Scott, suffered a stroke caused by an intraparenchymal brain hemorrhage, cerebral edema, and superior sagittal sinus thrombosis. This led to complications such as seizure and clotting disorders along with a hemicraniectomy to remove the right side of her skull, relieving pressure on the brain. Her skull was replaced by cranioplasty in August 2019, but her body began rejecting it, as she suffered infectious necrosis of the autologous cranial flap, leading to another hemicraniectomy in January 2020. A titanium mesh was implanted in March 2020, and fortunately she has since been on the mend with the help from her family.
Being a caregiver to a loved one can be emotionally, mentally, and physically draining. A roller coaster of emotions which often just leads me to guilt, as I know the person who it is most difficult on, is obviously my mother in her recovery from a stroke and two craniotomies. She had the stroke a month before my college graduation and I spent the summer with her in the ICU, completing final exams and essays in operation waiting rooms. By the fall I had returned to the East Coast for a job, but it was difficult to have her condition worsen while I was on the other side of the country, especially when I had been at the hospital everyday initially. So when I found out that after over a year in hospitals, she was able to finally return home, I decided to move back for a bit to help in her transition. It’s difficult to find balance though, I often feel embarrassed when I give into my own struggles, as my once very independent mother is now completely dependent on others for everything. A slippery slope of putting your own pain into perspective, yet not wanting to completely invalidate it.
My emotions have ranged from extreme to numb. I have been given pamphlet after pamphlet from hospital social workers on the different personality and emotional phases individuals go through while healing from a traumatic brain injury. My mother however, has remained relatively passive and good-humored through everything. I often joke I was the one who went through the angry and sad stages. To the shock of everyone who knows me, my shy and quiet demeanor disappeared while my mother was in the ICU, replaced by one which would kick out any nurse or doctor from her room, along with aiming that anger at my family. With my mother in a coma, every pillar of structure and security in my life had crashed down. I would blaze through rooms and hospital hallways with my blood boiling, only to start crying so hard, it turned to laughter. My emotions peaked at such extremes, my body couldn’t properly register them anymore to assign the correct reaction.
What do you do with a moment in time you never would have imagined to be in possession of? Maybe it’s strength which gets you there, a wicked one which you don’t know you have until life wraps its white hot hands around it and pulls it out of a space you thought was hollow. Though I feel far from strong. My mother along with any other stroke survivor knows this type of strength all too well. It’s the one you don’t want, but are forced to use. It puts you in this place you don’t know what to do with. It expands reality around you, creating the here and now which was never meant to be. Now, the things you thought you were meant to have, don’t feel right anymore. I almost lost my mother, and with her a huge part of myself. I sometimes feel that part of me actually is gone, or at least, so different I don’t recognize it.
An event such as a stroke affects a whole web of people and keeps rippling out. At the end of the day though, no one has it harder than the person who has suffered the stroke, and I would never want to take that away from anyone who has suffered a similar trauma. Even in writing these thoughts, I found myself hesitating, but I have come to accept that being a caregiver is no small feat, along with being rewarding. My mother provided me with so much love, support, and guidance, that I feel privileged to be able to create security in this new life she has to navigate. Our roles have completely reversed, the fabric of our relationship feels much different. Many people have told me not to lose myself in this process, but I am a very different person now, along with my mother, and everyone else who loves and is close to her. The truth is, I lost the person I used to be the second I found out my mother had a stroke and in writing this, I hope that I, along with others reading this in similar situations, can process our emotions to learn more about this new version of ourselves.