Alzheimer's and the fear of Death

A very personal story about my mother's struggle with Life and Death

My dad always told me and my sister to work hard now, so we can enjoy life later. He practiced what he preached, always giving his everything to his company. He once told us that if he had to choose between his family and his company, he would have to choose his company. Although it left a mark of never being enough then, I can’t blame him anymore, because I now see that he was apparently meant to play that part. For him, 60 was a magical number, because that was the imagined ideal age to stop working and start enjoying life. That was his expectation for the future, his hope for a later time.

Then, one day close to his 60th birthday, after a visit to their GP, their entire dream was ripped from them, as life unfortunately has a tendency to do sometimes. My mother was diagnosed with Alzheimer’s, a disease you probably all have heard of and perhaps even experienced in your near surroundings. It is a cruel disease which slowly chips away everything that you once were. It slowly chipped away her ability to function independently, even to speak. It chipped away her memory and her sense of time. It chipped away her physical mobility. And worst of all, her identity. The proud and independent woman that she once was has shrunk to an anxious and vulnerable child, not even able to go to the bathroom by herself.

To witness the image I had of my mother being chipped away has been very emotional at times. But what to me has been by far the most challenging was to witness her struggle with her destined degradation. She found herself to be too young, not deserving of this inhuman condition. And because of that, she could never accept her illness. She could never accept that everything she once was, would be taken from her. And how could she? So she fought with everything she had, against this condition that was destined to deconstruct the egoic glue that holds us all together. Sometimes it seems to me that she has suppressed her emotions for so long, that life needed a release-valve of some kind. As if her condition was the release-valve needed so the emotions could finally flow and be felt. She now has no choice anymore, as intense emotions flow through her on a daily basis. But of course, that thesis is merely speculation.

Last week, me and my sister went to visit multiple nursing homes, and I was amazed of the diversity in functioning and behavior of people having had the same diagnosis. One lady came to us and was proud to show her room full of self-made paintings and art. She talked in an eloquent matter, seemingly satisfied to be who she was at that moment, while at the same time unaware of the person she once was. There were people sitting in silence, people reading a newspaper, people strolling back and forth down the hallway. Although I can’t possibly experience their perspective and their degree of satisfaction, to me most of them seemed satisfied. Unaware. Living in the moment.

My mother has always been adamant about specialized nursing homes, she would rather die than live her last years in a confined space together with people she didn’t know. So she wanted to receive euthanasia, a painless ending of her life administered by a doctor. It is a controversial method, but allowed in the Netherlands, and I am personally glad it is. However, an intention is not an act, and ever since she consciously intended to receive euthanasia on the day that her suffering would become unbearable, she has avoided the conversation of Death.

Death is one of the few things, perhaps the only one, that is certain. And yet, many of us live our lives as if the day never comes. Avoiding it in our conversations, even in our thoughts, as if that somehow would protect us from meeting our destiny. As hard as we try to label Death to be negative and Life to be positive, reality is that both are inherently part of this cosmic play we call the Universe. It is only when crisis hits in our near surroundings and death shows his face, that we can’t avoid it any longer. And it is often after these life events that we are either sucked in a state of unconscious survival functioning, or a state of highly conscious vibrant aliveness. A vibrant aliveness that has the power to permanently change our perception of life. As if sucked into this present moment, simple daily experiences like a flock of birds dancing in the sky can become marvelous, gratitude-provoking shows of divinity. It is only because of death, that we can live so fully. It is only because of death, that we really feel the gratitude of being alive and all of the beauty, even agony, that comes with it.

That is not to say that fear of death is not deeply buried in every human. Whereas I can now easily say I would make the decision for euthanasia if I were to be in the same circumstances my mother is in, that would merely be an intention. Not an act. Humility teaches us that we cannot know how we would decide in the moment. We think we can, but thank God that we don’t act on everything our mind tells us. For it would most certainly cause havoc.

My mother is at a crossroads now. She either has to decide that Death is the only thing that could relieve her suffering, or her condition will continue to worsen while living in a place she did not want to live in. It is an inhuman decision to make. I could hope for the first option, but hope is a fool’s game. It is a subtle resistance to what reality might bring, labeling only one outcome as good, thereby setting myself up for disappointment. The reality is that every outcome will hurt. And whatever choice she will make, I allow myself to fully feel the pain in me. Life does not exclude anything, even death. And I will not either. As these moment of pain are not only cruel and painful, they are also intimate. Heartfelt. Reality without the fluff, just how it is. As it is. It’s dramatic life stories like this that teach us to live fully now, without chasing idealized dreams of what could be.

Some weeks ago a nightmare haunted me, it was as if I felt my mother’s hopelessness and agony myself. But when the nightmare subsided, it was replaced by a dream in which my mother’s soul came to me and said: ‘It’s alright. I have found my peace’.

And to her I pray.

With Love,

Pim