I can remember one of the first moments when I realized my parents did not know or understand everything about the world around me. My dad was attempting to use his smart phone for something and kept hitting the wrong button. From the couch seat next to him, I could easily see the mistaken button push as he blamed the whole issue on the phone. The entire situation presented a common progression that young adults experience with their parents, where our perception of our parents moves from all-knowing to fallible, in the framework of a mildly frustrating technology issue.
This transition though, when we first begin to care for our parents instead of expecting them to care for us, is not always a smooth one. In the spring of my final year in undergrad, my mother was diagnosed with a brain tumor. She and my father insisted that I stay at school, finishing my last semester, and graduating with my class. They would video chat with me, hoping, I believe, to “prove” that all was well at home, and that I needed to stay where I was….200 miles away and feeling helpless and distracted. I graduated that May and began an internship while waiting to see if I had been accepted into graduate school. So began my quick transition into caregiver-hood. At first, this consisted of weekend trips back home. While these weekend excursions were mostly for my benefit, I think my family enjoyed having me home more often than before. My mother remained quite independent though, as she had surgery and began treatments for her cancer.
Goodness, Mama! You are the strongest person I know.
My parents traveled from time to time for the clinical trial she was taking part in and I called one night to see how everyone was doing. My mom reported that they were doing great in their hotel room. My mom said that she was under the covers, my dad was on top of the covers, and they were both eating candy bars. This scene, while hilarious in a time of great crisis, seemed to epitomize the normalcy still found in the tragedy of this moment. My mom, always cold; my dad, always hot; and both of them indulging in some chocolate. My mom had a constant plethora of hope that this would all end just fine. We would all survive this.
In the fall, I began graduate school and all seemed as good as it could be. During that summer though, with one year of graduate school under my belt, all hell broke loose. My mother had a stroke. Later that summer she was taken to the ER in an ambulance for blood clots. While she recovered much of her motor abilities at a rehabilitation clinic, she now needed a wheel chair more often and one of her hands remained often in a splint. She needed help with many of her normal daily routines, from bathing and bathroom visits to getting in and out of a car. I continued my weekend visits until it was clear that I was needed at home more often. I started playing graduate student 3 days a week, and caregiver daughter 4 days a week.
It’s nice being home so much with you Mom.
A few weeks into my caregiving role, it was clear to me that my father and I needed more support. I encouraged us to seek help from a local caregiving agency, normally meant for senior care. At first my dad was hesitant. He obviously wanted to provide whatever my family needed but the idea of allowing someone else to take care of my mother while he did something else seemed to be a foreign idea. The dwindling hope of a full recovery, seemed coupled with our need for more caregiving support. Neither he nor my mother were ready to admit that full recovery was no longer a likely final outcome.
Gradually my mother’s progress slowed. I dropped one of my classes and received permission to delay finishing the other two until the following semester. I halted my research until a time yet to be determined and I moved home with my parents full time. My fiancé joined me but spent most of his days working in a makeshift office that we’d set up in my parents’ living room. My mother needed more and more help. I felt caught between two worlds…the world of caregiver for my mother with cancer and my world as a young adult, newly engaged and now spending time apart from a very competitive graduate program that I loved. I wanted to know when this period would end and felt the pull to return to my life as a grad student where I feared life as normal was moving along without me. I wanted to succeed in my new field and I wanted to get married with my mother present. I was increasingly frustrated with this new woman, with the brain that wouldn’t function properly, who looked and seemed a lot like my mother, and yet was so different than the woman who had raised me. I stopped calling her Mama, as I had taken to doing in moments of sentimental affection, and just called her Mom. I secretly felt like an awful daughter, wanting my life to return back to normal while somehow knowing that this meant transitioning to a life without my mother. This thought brings tears to my eyes even now, 4 years and 6 months since her death.
Eventually, my mother’s oncologist, a professional yet close friend of hers, came to the house for a visit and urged my mother to start hospice care, abandoning the hope that treatment and physical therapy had been providing. I agreed with the physician. Moving my mother in and out of a car was becoming increasingly difficult as her brain rebelled against once normal functionality. I was often afraid of dropping her or losing control over our joint footing as we transferred from a couch to a chair, or from the wheel chair to a car seat. We once had an unfortunate accident during a bathroom visit and I had yelled at my mom, hoping to refocus us both to the task at hand, yet failing miserably. I agreed with the physician that hospice care would help my dad and I care for my mother. We would have more help at our disposal and I wouldn’t need to worry about going to and from appointments anymore.
I’m sorry that I yelled at you, Mom. I’m sorry I seemed stuck in what I *had* to do to take care of you instead of delighting in our time together.
I have replayed that conversation in my mind a million times. I felt as if I was rooting against my mother; like I was playing against the hope that she and my dad still clung to. I wanted my mother to live as she had before, a strong and lively force in my life, but she wasn’t that way anymore and I felt simultaneously mad at the change in my life that the cancer had caused and my selfish reaction to it. Keeping my mother at home was the safest option for all of us, but being the voice of reason was hard for me. When had the voice of reason become the voice shouting out the reality of our situation that my mother was not getting better? And if I spoke that opinion, would that make the fact that she was in fact dying, more true?
I hold so much regret over this time in my life. I was always afraid of my mother dying and simultaneously mad that I seemed to be the only one who noticed that it was happening. I felt very much like I couldn’t advocate for proper care for my mother while she was dying without shouting out loud that her life was nearing a close. I felt that by calling our attention to the reality of the situation, I was rooting for this hopeless reality to be true.
The actual truth of the matter though, is that caregiving and particularly, caregiving for someone who is dying, are difficult endeavors. Learning to adapt to the needs of yourself as well as the needs of that person for whom you are providing care, is an often cumbersome balance. There is no “being the bad guy,” there is only your own process of understanding the situation at hand. We will not do this perfectly. Just as we make mistakes in our journey of living, we will inevitably make mistakes in our journey of living with and caregiver for the dying.
Do what you believe keeps you safe and that which keeps your loved one safe. Give care with love and attention, both for yourself and for your loved one. You will be able to make it work in the end.
I really miss you, Mama.
Mallory is the Founder and CEO of Lacuna Loft, a 501(c)3 registered nonprofit organization featuring lifestyle and psychosocial support for young adult cancer and long term illness patients, survivors, and caregivers, found at LacunaLoft.com. She served as one of the primary caregivers for her mother undergoing treatments for a brain tumor just months before receiving her own diagnosis of Hodgkin’s Lymphoma. She is an ex-Rocket Scientist who is passionate about helping people find the resources they need in order to thrive. Launched in March 2014, Lacuna Loft is her labor of love to the young adult cancer community. She is thrilled to grow and expand Lacuna Loft for young adult cancer survivors everywhere!