Alzheimer's and the day of judgment

Another personal story about my mother's struggle with Alzheimer's disease

A month has past. And so has the option for Euthanasia. Specialized euthanasia doctors brought her one last visit, but my mother’s will to live was too strong. She projected her fear of death out on the doctors, seeing them as evil people who wanted to end her life. So on that day, she passed the crossroad of choice I mentioned in my last blog. Meaning that a day would come on which a judge would decide how she would spent the last years of her life.

Yesterday was that day. The judge listened to all sides and was quick to decide that the current situation was unlivable. Dangerous even. So she demanded my mother to be placed in a closed institution, where she would be spending the rest of her life.

On the same day, we took her to the institution, and she all regarded it as a funny family trip. Even when in her new room, showing her the pictures of us hanging on the wall, she didn’t realize that she would stay there. Until silence fell. She looked my father in the eye and started to question his intentions. And when when my father was taken away by a nurse, the realization hit her. And her sense of certainty with it. She exploded into a combination of hopelessness, agony and madness. Again projecting her frustration on me, my sister and the nurses.

It was hard to leave her behind. Is it right that euthanasia could not be granted? Nobody knows. As global governments around the world showed during the pandemic, our society values life more than anything. Life and free will. In the case of Alzheimer’s, while the agony of the sickness increases the sense of free will recedes. Leaving only life in agony, eventually without any sense of identity or recognition.

Life is only valued this much in a world that is perceived to be separate from us. A world that is perhaps even perceived to be dead. We humans as the great creators of meaning. The outside world as a meaningless stack of materials waiting to be used. Maybe, just maybe, our society would start to value death just as much as life when slowly remembering our own essence of unity. Not standing on earth, being part of it. Perhaps the solution lies in changing our own perspective on life and death, instead of continuously trying to lengthen the linear duration of our lives. For death will come eventually, no matter how hard we fight it.

A couple of weeks ago, while sitting next to my mother in silence, a memory came to me. A memory of a song she used to listen to many times in the past. My mother never was one of main-stream music, she liked her music to be deep and heartfelt. Anthony & the Johnsons was her favourite bands, with the song “Hope there’s someone” being here most loved (listen below). So in that moment, I played the song, and felt it resonate deeply with her. She cried out of joy and I cried with her.

And during our bonding moment together, I was struck by the Lyrics that seem to describe her fate so beautifully:

Oh I'm scared of the middle place
Between light and nowhere
I don't want to be the one
Left in there, left in there

The belief in coincidences fortunately left me long ago, as I now see our beautiful world as animated and alive reality pervaded with meaning. And in that moment, grace showed its face once again. Just like it does now, sending tears over my face while I’m touched by gratitude for being allowed to experience this moment. Yes, even this. Yes, even experiencing my mother lying on the floor yesterday crying out of hopelessness. It was one of the hardest scenes I have ever witnessed, but it was met with an open heart. For a heart already broken is not afraid to be broken over and over again.

Allow yourself to be touched, it will free you.

Pim