by Peter-Vincent Schuld

Much is said and written about Alzheimer’s. Somehow, there’s something holding me back from taking it all in. How much all documentaries, books and support groups are all incredibly good and sweet. I have my own way of dealing with it.

On October 21, 2009, my father passed away in my arms. He suffered from Alzheimer’s. Dad had only died a few days ago when I was told by my parents’ family doctor that my mother had suffered the same fate.

I remember very well that the moment my father took his last breath, I cried out in grief. I had called my mother with the words “come to the nursing home quickly”. The lady who drove for mom didn’t think it was all that bad and so my mother missed the last breath of my father with whom she had shared so many years of joys and sorrows, had cared for all that time and had assisted with all imaginable love and devotion.

My mother has been in a nursing home in Tilburg for several years now. Terribly sweet caregivers and nurses. People you can only come to love. They give my mother, who is in the winter of her life, everything in their power to maintain her quality of life in any way. In good health, my mother was a real “lady”. But nature knows no distinction and strikes hard and relentlessly. Once developed by nature, nature once again excavates the given brains so quickly.

In the time that my mother has been in the nursing home, it has been “side board” a number of times. Now again, now that a virus has attacked the petite body with hardly any meat, let alone fat on the bones, my vulnerable mother. Every time my mother dangles on the edge of life or the unknown end, she managed to get through it with an iron will that from her deepest being, always overcomes the attacking elements. How relative can fragility be? Simultaneously; How fragile relativity can be again. Yesterday’s situation may be overtaken by the night.

Mum speaks her own language. Spoken words that we initially perceive as incoherent. Words that, if you take the time and listen, turn out to have a logic of their own. A logic and a meaning that you have to learn to understand. When I hold her hand and I look at her, there is a flood of words that may not even seem to be in the dictionary. Words that you can’t even place in a time of the present or the past. They narrate a reality that my mother experiences. It’s a huge puzzle for me and a pure cryptic analysis. Yet those almost incomprehensible words and sentences have an obvious meaning that I have to find in seconds after my mother communicates the multicolored palette of speech corruptions. At precisely those moments, it is so important that you do not take in those incomprehensible words through one ear and let them leave your head and brain through the other. From the abstract sentences a work of art of lived life can be deduced. Relatives who are no longer with us, but live on in the eternal memories of what once was. Deceased loved ones are brought back to life. They play an active role in my mother’s regressive experience. My father, my aunts and uncles suddenly come alive again as if you laughed and ate with them yesterday.

As long as my mother speaks, she doesn’t die. Die… Let’s face it. Alzheimer’s is a disease that destroys the dignity of a human being. Every stately appearance of yesteryear is reduced by this disease with the greatest of ease to an elderly fetus in need of help.

Dignity, even this concept as we explain it, becomes acutely subject to inflation if you take the trouble to experience what is still possible, no matter how needy my mother is.

A society-imposed conformism such as shame for the body falls apart like grit when the diaper has to be changed and my once prudish mother stands in her bare buttocks. In case you hadn’t gotten around to it yet; Shame for the naked body seems like an illusion motivated by a false denial of what nature has given us.

My mother had always made it abundantly clear in her life that she abhorred active and passive euthanasia because of her philosophy of life and would always put her fate in the hands of the gatekeepers at heaven’s gate.

I have defended this express wish of my mother with fire and sword, despite the fact that, for myself, I have a different view on perfect life and euthanasia. I don’t have the slightest right to interfere with my mother’s decision. I wouldn’t know what to do with my conscience if I were to steer differently or cooperate, regardless of whether it would be legally possible or allowed to do so at all.

In the moments when my mother was very poorly lately, my mother and I shared love for each other. Unconditional love. We exchanged and exchange feelings of connection and strength with each other. Not even always with words. Often with touches, caressing a loving gaze. The unbreakable bond between mother and son. Yes, I’ve always been a mother’s boy and so what. I’m not ashamed of it.
It is unbelievable every time that, while my mother was clearly dying, she recovered every time, including this time.

No sedation that put her in a sleep she couldn’t get out of. In the struggle that nature allows to be waged in the body between life and death, incessant streams of power seeped into the body. Wanting to stay together. Of course, the moment is getting closer and closer when this stream will dry up. Death will demand that love live on merely in memory.

Those who have the opportunity to be able and willing to feel and do not want to let the inevitable death be manipulated by human intervention can gain very rich and valuable experiences that you will take with you for the rest of your life. I also understand that this path of the end of life is not for everyone. Neither for the dying nor for the loved ones. It is a gruelling journey like a march with luggage that is many times heavier than one’s own body weight. But the journey is pure and brings you into contact with your deepest emotions that you may not have known existed.

My mother……… Its powers diminish, but its strength of existence remains intact.