Dear ones, can we mourn the loss of a person even though he is still alive? Because his mind is slowly and progressively fading away? Because a farewell takes place in installments? Steven asked himself these questions when his beloved stepfather was diagnosed with Alzheimer’s dementia. He has now dedicated his latest song to this company. It is called "father and son". And you can see and hear it further down in the article.
Dear Steven, when did you first notice that your father was changing, how old were you both there?
My father was an all-rounder in the craft business: building, constructing, also insulating houses, he extended our complete barn, he could literally fix anything, also cars and washing machines etc. As a trained electronics technician and construction equipment specialist, he had a huge display of different tools in our barn.
When the company he worked for went bankrupt more than ten years ago, it was bought up, along with its employees, by a large construction company in Mannheim.
At that time there was a period when he was sent to do repair work at a sewage treatment plant, he lost a lot of body weight during that time. For domestic projects, my grandfather helped him as he often did. From then on it became more and more noticeable that he often forgot where he had put his tools, he also became more and more irritable from work.
What happened next, did you have a diagnosis soon or did it take time??
There were rumors that company employees started bullying him. That they secretly misplaced his tools or plans and he was no longer able to do his work well. So, in addition to the initial forgetfulness, there was also psychological pressure. After he fainted in March 2015, causing him to crash his tool bus into a wall in a parking lot, he went to see a doctor.
It took some time until a diagnosis was made, because nothing physiological could be determined at first. In the Rheinhessen Fachklinik in Alzey, which has a psychiatric focus, he was first diagnosed with a severe burnout with severe depression. Because of his physical condition, more tests were done and it turned out that at the age of 56 he was diagnosed with early Alzheimer’s dementia.
Was the certainty at some point also a relief?
At first, yes, he was given medication against his severe depressions and became such a gentle, loving person over time… I asked him where he had hidden it all these years. He said that he had completely suppressed his feelings and lived for his work, so that we were protected. That was the most important thing for him, but he suffered from big mental problems and just couldn’t get out of it on his own.
Unfortunately, my father always refused to talk about the possibility of therapy because of his difficult childhood. Because my father is also dyslexic, he often felt inferior in other areas as well. He simply did not see that he was very talented artistically.
When I was 7 years old he forged me a sword, because I was such a big medieval fan, but also as a stone sculptor he could create great things, not least his carving art was legendary in our family.
What did this creeping departure from your father’s former character do to you? How does it feel?
The first three years were quite normal, even very nice, he was doing well at home, got occupational therapy and was able to support my mother, who is independent, very well. He visited me often in Mannheim, he was still allowed to do quite a lot as an early pensioner, there were regular tests, so that one could determine what he was still able to do. He talked openly about his illness, one noticed only slowly the decay of his mind, word-finding disturbances as an example, were the most noticeable thing.
For someone like me, who is a musician and for whom words are so important, a feeling of fear gradually crept in. Due to being Asperger’s autistic, it wasn’t tangible to me at first. In the course of time I understood through the illness on the one hand what this man had given me according to his possibilities and that this illness is also a gradual farewell. To see how the mind of a loved one fades more and more, is very painful, because you know how it will end.
Were you able/willing to talk to someone about it??
As an artist, I have good access to people despite my autism diagnosis, so it wasn’t hard to find people to talk to about it. Especially since I also used my music as an outlet. Of course, as a human being you think to yourself: damn, I’m dyslexic myself, autistic and severely visually impaired with quite a few food intolerances, apparently I’ve been shouting "Here!" everywhere and now one of the most important people in my life has this creeping death as a disease. Am I cursed?
I have had good conversations with my friends and confidants who know about it… but no matter how often you talk about it, there are moments of absolute powerlessness, and precisely because Alzheimer’s dementia is also a very taboo subject, I often run into walls, because the unaffected can rarely empathize with it. You can not fully understand how sad I sometimes feel about it. Some people don’t want to know much about it because the disease scares them. Which I can even understand.
To what extent was your father part of your everyday life during the time of your illness??
At this point, it might be worth mentioning a little something that I didn’t take for granted for years, but that became second nature to my father and me:
My father is basically my stepfather, he came into my life when I was four years old and he took that role directly. He also didn’t want any more children, he always said so:
"I have a son’". That was enough for him. He never gave the impression that if my parents separated, he would no longer be responsible for me.
My biological father died at the time my father developed Alzheimer’s disease, so this question is easy to answer: Papa Werner was generally omnipresent in my life until today and became even more present in everyday life when he could no longer work and was still reasonably fit. So we had conversations between father and son that I could never have had with my biological father.
He has also forgotten through his illness that he is my stepfather. It’s a little funny, but it openly shows the great bond he has with me. Therefore I can say: as bad as this disease is, in everyday life it also enlivened our relationship in a special way. It is important to focus on the positive things, things have to go on. My father always tried to give me my artist life together with my mother.
Did this bring you closer together or did it feel more like an ever increasing distance??
I guess I jumped the gun a bit with the answer there, it definitely brought us closer together as he was finally able to show his love, which he probably couldn’t because of his depression, but of course due to mental deterioration access is increasingly difficult. I have to remember the bright and beautiful moments.
Since he ran away from home three times in 2021 and had to be searched for by several police squadrons, he has been living in a home. And that is relatively far away, so I don’t see him much anymore at the moment. Since I unfortunately can’t drive a car because of my visual impairment and am on the road a lot as a musician, it is always a big vote within the family to visit him together.
You then at some point turned your pain into creativity and wrote a song called Father and Son. What is it about??
It is a special piece of history from the common biography of my father and me as his son. It’s about the memories from childhood that will never fade, that I will never forget. About the gratitude to have him as a father, about my love for him as a person and that I want to dispel the fog in his head with stories and music.
But above all it is about the fact that no matter what happens, we will always remain father and son. Because beyond this illness there is something much bigger and that is the love you carry in your heart for a person. The song "Father and Son" should reflect all this. He was the one who gave me my middle name Elijah when I was a child, which is now my stage name. So he was also unconsciously involved in my career.
Was it painful to write it and finally sing it or liberating??
Writing the song with my team had a liberating effect. The pain comes up more with everyday things, when I go for a walk with my little son hand in hand and think about the fact that his grandfather can’t really experience all this anymore and unfortunately can’t build a real relationship with his grandson because of his stage of the disease. Especially since my son, who is 2 years old, does not yet understand the whole thing. I therefore try to continue to record things musically, so that one day I can tell him a lot about his grandfather.
Get feedback from people who also suffer from panic disorder?
There was incredibly great feedback on this song away from the music industry. It seems that I have really hit a nerve. This song found its way into so many playlists, also into the playlists of people who are affected themselves. There was heartfelt feedback, the song might as well be called "Grandma and Grandson" or "Mother and Daughter"! It was very great to get so many encouraging messages! I think that this song is also my most personal work so far and will stand the test of time – for all people who know these fates.
What advice would you like to give to others in a similar situation??
I ask people who have the opportunity, especially in the media, to talk more about Alzheimer’s dementia! For all those affected, I can say one thing: even when everything seems so dark right now, there is a light, a spark of happiness, which we can grasp and should not let go of again. Pain gets better and you learn to breathe again! I’ll end it with the words of Hermann Hesse, which have helped me: If we can make a person happier and more cheerful, we should certainly do it, whether he asks us to or not."
Lisa Harmann
Lisa Harmann has always been curious in all directions. She works as a journalist, author and blogger, has three children and lives in Bergisches near Cologne, Germany.