As my mother entered the final phase of her life due to terminal cancer, these past few months I was faced with the challenge of putting A Course in Dying into practice. What was most remarkable to me during this process is how some of my experiences were not at all like how I had imagined them to be. In the light of truth and the ultimacy of reality, I feel it is important to share this honest account with you. To give you an insight into the various scenarios of how we cope with death and loss.
I never felt like I had a real mother. Ever since I was little, our connection was one of harsh words and detachment. She would dress me like a doll, but treat me like a nuisance. The days of my youth were chain reactions of endless fights, broken up by the moments she was gone and I was alone with my father, who as best as he could restored my sense of having a normal childhood. As I grew older, my mom and I drifted further apart and became strangers who barely understood why they were living in the same house. So as soon as I could, I left.
The distance created between us after I moved out gave us another chance at some sort of a relationship. And with time, it did improve. We kept in touch by phone and I would visit once every few months. I always dreaded the moment I had to return to my parental house. It felt like stepping into a time machine and being right back at those miserable years of my youth. But it was the kind of self-sacrifice I knew I had to make. For although my relationship with my mother was still difficult, and by then my father was too old to really care, I did wholeheartedly love them both.
When my dad passed away in 2009 I was devastated. The bond that lacked between me and my mother was twice as strongly present between me and my father. His death was both horribly traumatic as well as transcendentally beautiful to me. For at least an entire year after, I would have nightmares about him dying. Yet, these bad dreams, as well as the period of grief I went through while awake, were all worth having been there for him. He was my father and he was dying and I simply had to be there. There was no question in my mind about that.
Once my mother was living on her own, I found it even harder to visit her. The house now not only kept inside it the memories of my youth, but also those of my father. Memories both bad and good, but neither necessarily of the kind I felt like being reminded of too much. I struggled with the thought of fully disconnecting from my mother and not keeping in touch anymore. To cut the ties, be done with the past, and to be able to fully live my life in the here and now.
But some of the visits I made to my mom were good. I often asked her about her past and she would always be willing to tell me everything I wanted to know. The thing is that she would sometimes tell me too much. Of the lovers she had had besides my father when I was little. Of the man she was seeing now, of whom I did not really want to know anything. But there was a sparkling light in her eyes when she felt like she could open up to me, so I would just let her talk, while covering my ears with invisible hands. There are certain things you just don’t want your parents to tell you. My mother always wanted to confide in me, as if I was her best friend. As if we were both sixteen years old, experimenting with boys for the first time, bewildered by the existence of such thrilling experiences. In a way, throughout her entire life, my mother remained this sixteen year old girl. She had a big open heart, yearned for love and recognition, but did not always know how to communicate with others, or how to give love back in return.
At my mother’s funeral, one of her brothers described her as “special” and “different”. Born in a small town in the Netherlands in 1949, she arrived in a post-war world shaped by trauma and hope. She went through a lot of hardships in her early life, but when she fell in love with my father in the 80’s she had the best years of her life with him. I did not exactly experience my youth back then as the best time of my life, but I suppose that is a matter of perspective. My mother had finally found a safe place to call her home, had one last child that was me, and lived freely, happily, in her own way.
She called me up one day and told me she had cancer. I remember this phone call vividly. I was on a ferry. I can still see the waves of the river and feel the wind in my face. I linked this message instantly with the inevitability of her death. The world crumbled underneath my feet. The ferry and the river turned into a minimized version of reality that only consisted of my cell phone, my mother’s words and a flash summary of the life I had spent with her. “Don’t worry mom,” I said. “You will be alright.”
And for two years she was alright, bravely going through the motions of prescribed surgery and chemotherapy. Up to the point where she was even declared cancer-free. I did not quite fathom how this was possible at all, but did not want to discourage her or bring her down either. Through her narrow understanding of the world, especially of the medical world, there was a lot of miscommunication between her, the doctors, and the other family members. Oftentimes I was reminded of Atul Gawande’s powerful book ‘Being Mortal‘, in which he describes how doctors find it difficult to communicate the truth of an impending death to terminal patients. A lot of doctors rather give out treatments, even if they know it will lead to very little improvement – and sometimes even cause the quality of life to be reduced by these treatments – than confront a patient with the fact there is no possibility to be cured anymore.
My mother slowly recovered from her treatments and started making new plans for her life. She wanted to get another cat, redesign the garden, and when she was in a giddy mood she would speak of her wish to fall in love again. Less than a year after she was declared healthy they found metastatic tumors during a check-up, and little could be done at this point to treat it. Her body rejected another round of chemo and she decided not wanting to continue treatment. I felt the strangest sense of admiration for my mother when she told me this. To me it meant she knew she was going to die, and wanted to do so as gracefully as possible.
During her final weeks in the hospital I went to see her almost every day. Nothing that had happened between us in the past that had ever made me sad mattered anymore. I wanted to be there for her, to help her and possibly even guide her into what I thought I knew of the process of dying. Talking about the subject was hard. She would express her fears and worries and I would try to open up a conversation about it with her, but in the next sentence she would be talking about a totally irrelevant topic like the weather, or a TV show. But we found other ways of dealing with it.
We shared valuable moments and stories of happy memories. There was one day in particular when she was incredibly hyper, probably due to medication, and couldn’t stop talking. She wanted to tell me everything there was to say. I asked her how she had met my father, how she knew she was in love with him. She told me how handsome he was and that he had bought her a fancy bottle of perfume as a first gift. She always wore this perfume on special occasions and I knew it was her favorite, but I never knew the story behind it. I stayed with her for the entire day. I helped her go to the toilet, where she would go on chatting excitedly to me from behind the door. It was almost as if we were out partying at a club, high on amphetamine or XTC. She was physically clearly very ill, but her spirit shone through as bright as ever.
Two weeks later I saw her for the last time. We had created this ritual where I would put lotion on her arms and hands so her skin didn’t dry out too much, but it was really more of a way of physically connecting and comforting her. She would fully relax into it when I touched her. During this last visit, at times it seemed as if she had already passed away while I massaged her skin. It frightened and confused me at first, but her shallow breathing kept returning. Talking was nearly impossible for her, and during the two hours I was there the nurses had to come in a few times to help her with physical difficulties. I felt extremely powerless, witnessing this final stage.
She was brought to a hospice where she died three days later. I never visited her there. I struggled a lot with my conscience, but I strongly felt I could not cope with witnessing her dying like this. It was simply too painful. By then she had turned into only a shadow of the person she was. I wished I was stronger, or that our bond had been stronger so that it wouldn’t even be a question for me to be there or not. During one of these days I was listening to the radio while thinking of my mother and this song came on with lyrics that literally said: “Don’t you come visit me when I am on my deathbed.” As if it was an order, or rather a confirmation of her saying, “It’s okay, I will be alright.”
I did arrange some things for her from a distance. Together with my brothers and sisters we discussed the option of palliative sedation and decided it was best to start this as soon as possible, to relief her from her pain. As my mother was Catholic, I arranged for a priest to come visit her and give her spiritual guidance. They prayed and she received the last sacrament, which is a final rite of passage in which a person receives forgiveness from God and which prepares them for their final journey. This ritual was brought back to my attention recently by a wonderful initiative of the Catholic Church – The Art of Dying Well.
She died in her sleep the next morning. I did not cry when I heard the news. I did not even cry at the funeral, which made me feel like an incredibly odd person. In hindsight I believe I already partially processed my grief in the weeks leading up to her death. When the moment came, it was a slight relief; a sense of being happy she was finally free.
Shortly after she died, a friend of mine also lost his mother. We spoke about how strange the process of losing someone you were once so close with can be. And I told him that no matter how good people’s intentions are, no one can really know what you are feeling or going through, as everyone’s relationship with their mother is so specific. Only you can know, and only you can go through it, as you will.
These past few weeks showed me once again that there is a big difference between contemplating death and philosophizing about it, as I love to do, and to be faced with the actual reality of a dying person. I had initially assumed I would be able to make death an easy transition for my mother. That I would be able to guide her, to assist her into what I believe can be a blissful, divine experience. But my own emotions, which I’m sure include my own fear of death, guided me toward a different path. And I realize now that this is exactly how it was meant to be, regardless of moral judgement, of what is right or wrong. I don’t feel any guilt or regret, but rather a sense of positive confirmation, that this was how it had to be.
I have lost my mother, but in the painful process of losing her I simultaneously gained a mother, as we became closer than ever before. Death remains the ultimate unknown, and her being part of it now only adds to the mystery and grandeur of things I thought I knew. I know now that one can only know a tiny little part of the absolute truth of reality. I know I am alive, and I have her to thank for this. And to infinitely love for this.