How to Accept that Your Parent is Dying

By Rita Neyer

I have been wanting to write this piece for a while now. In February,I had pitched it to my editor, but until now couldn’t quite get myself to write it down because it made it real. Cancer is very real. My mom had it twice already. Ever since I had known her, cancer had been a part of her. I recall many childhood afternoons spent patiently waiting in the hospital with my younger brother at my side. We sat in the oncology department’s waiting area, longing for her to be done chemotherapy. She would describe it to us in vivid and horrifying detail: the doctors inserting a knitting needle sized instrument into her stomach, the pain, the side effects. I was four, maybe five. It stuck because the stories scared me. After a while, she refused to continue with chemotherapy. It was too exhausting for her body. I did not understand back then, but I do now. From there on, twice a year we would join her to the hospital. She couldn’t afford a babysitter, and our father was not willing to take care of us. Marked, he would call her. To him she was scarred, touched by fate. The doctors had removed her left breast, and deep down I knew that afterwards she never felt beautiful again. She mentioned the verbal abuse from her husband a few times over the years, whenever she had a particularly bad day and could not bear the loneliness, but she was strong and kept going – maybe because she had no other option. The visits at the hospital became less frequent – once a year now. She kept working too much and too hard. Then, almost twenty years after the first diagnosis, the cancer came back. This time, it was a benign tumor about the size of a baby’s head. Ovarian. The surgeons removed it. Again, she survived.

She grew older, although in my memory she had always been old. My brother and I were both born in her forties. The age gap—the generation missing between us—started to bother me in school. Most of my peers’ parents were much younger, more patient, and understanding. As I grew older, so did my mother, but seemingly at a faster pace. One day, I realized that it was not only a generational conflict that strained our relationship, but the fact that we were given much less time than my friends and their parents. Not long after that, she was diagnosed with pancreatic cancer. With one sentence, the two or three decades I had anticipated to be left with her were suddenly reduced to two or three years. We all felt betrayed.

The first few months with her diagnosis were rough. She was still in Europe; I was an ocean away Canada. The helplessness was crippling, not being able to be there with and for her. We talked about it, weighed the options. Being in my second year of a Ph.D., we decided that there was no point in me going back and giving up on my education. Instead, we settled for a visit over the winter holidays, the first since I had moved away. In the meantime, my hope was that, through surgery, her medical team could get the cysts out of her body. But she decided against an operation. Too risky and too strenuous, she said. Instead, she opted for a ‘naturalist’ approach. Some charlatan, specializing in telepathic horse therapy, took thousands in exchange for shame and disappointment. My mother would pay her to talk to her on the phone and think of her sometimes. It took about one and a half years for her to see through the fraud. It took another few months until she told me about this realization, in December 2017, as a side-note to a conversation about Christmas cookies. I was incredibly relieved and, admittedly, a bit satisfied. During the same conversation, I told her that I had long since accepted her choice not to undergo surgery. I had come to the conclusion that in the end it was her body, her life. Nobody else could make her choices for her. All I could do was to accept her decision and support her as best as possible. We cried together over the phone and felt that both of us had a heavy weight taken away from our shoulders.

At that point, the cancer must already had spread, but we wouldn’t find out until a few weeks later in January 2018. She had been complaining about heavy pain, but that was nothing new. I lovingly called her ‘my little construction zone,’ because as long as I had known her, there had always been some part of her body in pain, usually two or three simultaneously. This time, however, it was different- They call it breakthrough pain – a chronic pain that often comes with severe conditions, unbearably intense and devastating.

When she went for the MRI, she was full of fears that the cancer might have gotten worse. The thought of it made her sick. I told her to wait for the results. Pain was nothing unknown to her, it could be anything. When she called me two days later—I was on the bus to work- her silence heralded bad news. Metastasis on the liver. My heart broke, not only figuratively. It must have skipped several beats. It felt like a bad trip. I don’t remember what I said to her, but after hanging up, I called one of my best friends to pick me up after work.

It took a few days until I could think clearly again. She is dying. This time for good. Nobody could tell exactly when or where, but I instinctively knew it was unavoidable.

From then on, I called her every morning. For two minutes on the way to work, during bus rides, sometimes after work or for half an hour on the weekend. More than that she couldn’t take. We talked about her dying journey, and she accepted it. More than that, she was thankful for the opportunity to talk about death with a clear conscience. Most of her friends and acquaintances, she told me, were trying to encourage her to ‘keep going’ or ‘see the bright side.’ They were reactions of helplessness or denial, or maybe both. Well-intended attempts to make death seem less daunting. But what makes death less daunting is not denying it. It is coming to terms with it. She needed to find peace in life – not feel guilt for ‘not making enough of an effort.’ She needed an open ear, a place to let out her sorrows about the constant and unbearable pain, somebody to support her with the reality of saying good-bye for the last time. And that, at least, I could offer. I suggested she should write down how she wanted her burial to go down, make a testament, reconnect to people she had thought lost. The next time she called, she felt a lot lighter: she had taken back control of the few things that were hers to control.

***

It is January 2020 now. My mother died on October 19, 2018 – almost exactly half a year after I started writing this text. She was in a beautiful hospice by a lake when it happened. The spice-coloured leaves on the linden trees outside her window were ready to fall. By the end, she had not eaten for almost three months. Her body was shutting down, preparing to release her from her cancer-ridden prison. I had the chance to accompany her during the last days. When I arrived from the airport, I said to her: “You have been strong for long enough. You can let go now. It’s OK.” The last thing both me and my brother said to her – unbeknownst to each other – just before her death was “Safe travels.” She left us that same night in the so-called little hours, all by herself when everyone was sleeping so as to not disturb anyone. The last meters she wanted to conquer alone. We buried her according to her exact wishes in the family grave together with her father and brother. She had detailed every aspect, to the last iota. The only thing my brother and I got to choose was the design of the urn from a pre-selected number of options.

Her death was not unexpected. We had seen it coming. We had prepared yet we were not ready for it. The pain was immense, and her death left a giant hole in our hearts. A year has passed since. She was not there when I got married, or for my convocation. She won’t be there when my brother finishes his PhD, or when we celebrate birthdays, or promotions, or even just to ask for her advice. A year later, the loss still sucks and is omnipresent. Recently, I had a beautiful memorial tattoo done in her honour. The memory is still fresh. As heart-wrenching and aggravating as the experience of losing someone so important was, I am incredibly thankful that we all got to say good-bye together and that she was an active part in the process. All the crying and insecurity and morbid jokes – they were ours. Accepting the reality of it allowed her to die according to her own terms. When she was ready to go, we were ready to let her go for her own sake, knowing that the bond we share can never be destroyed. Her death broke us. But it also brought us together in a way we had never imagined possible. I will spare you the wise words of how this experience has made me a bigger person What I can say is that my mother’s dying has forced me closer to her as a person. I now understand better many aspects of the life we had together, and how she raised us. Her illness made me accept her decisions as a self-determined being, and I am eternally grateful for being given the time to say goodbye and prepare. One day, I will be able to accept her decisions, and that she was making the best of the cards she was dealt  – just as she always did.

 

Banner image courtesy of The Wanderer Online Visual Editor Karlee Mong.