On October 4, 2019, the middle brother Lars Tore Berntzen died, 45 years old – half a year after the diagnosis became known.
On Friday 7 January, the family also said a final goodbye to the elder in the sibling group.
Rolf Olav Berntzen (51) died on December 20, 2021, after battling the rare nerve disease for over a year. At his request, he was buried near his brother Lars Tore in the cemetery in Malm in Steinkjer municipality.
Johan (28) knows he is going to die
– It hurts a lot. It is completely incomprehensible that both are gone in two years, so far too soon. Siblings will live together until they grow old, but that was not the case for us.
Pål-Anders Berntzen (38) is the youngest brother in the sibling group of three. He has buried both of his brothers in less than two years.
Both fell victim to the nerve disease ALS (amyotrophic lateral sclerosis), and Pål-Anders tells Dagbladet that he fears that he himself will also be affected by the disease.
BROTHERS: The last photo taken with the three brothers Pål-Anders Berntzen (from left), Rolf Olav Berntzen and Lars Tore Berntzen. Photo: Private
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About ten percent of all ALS cases have inherited the disease, but no one knows the reason why the Berntzen brothers were affected by the nerve disease.
– My brothers were given the worst cards. There is nothing you can do when you are diagnosed with ALS. It is simply death that knocks on the door, says Pål-Anders to Dagbladet.
It was Trønder-Avisa who first talked to Pål-Anders and told the story.
– We want some joy before we die
Brother gets ALS
The family tragedy was to start in the autumn of 2018. The middle brother, Lars Tore, who worked as an ambulance worker, began to feel his hand tremble. In the spring of 2019, Lars Tore was diagnosed with ALS.
– When Lars Tore became ill, I got leave from my job and moved home to Lars Tore in Malm in Steinkjer and worked as a brother, assistant, brother-in-law and uncle – when he wanted to be home until recently, says the little brother.
Pål-Anders works as a flower decorator in Bærum, but when his brother became ill, it was important for him to be there.
DISEASE: The middle brother, Lars Tore Berntzen, was diagnosed with ALS in the spring of 2019. He died already six months after he was diagnosed with the disease. Photo: Private
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It should soon turn out that Lars Tore had developed an aggressive variant of ALS. When he died in the autumn of 2019, his wife, children, parents, brothers and the rest of the family were in shock.
Even then, Pål-Anders had begun to reflect on whether he should be the next, but this did not happen.
Ordinary father of three – then came the shock
– I have been worried that I would get it myself after Lars Tore passed away. I’ve thought about it a lot. If it had been possible to test if you should also get it, then I do not know if I had taken the test myself, he says.
Next in the sibling group
The summer after Lars Tore had passed away, the big brother in the sibling group felt that everything was not as it should be.
In the winter of 2020, Rolf Olav will also be diagnosed with ALS.
Deadly disease Glenn’s wild achievement: – Completely insane
– When Rolf Olav became ill, I decided to move to Levanger to take care of my brother. He ended up spending a lot of time in a nursing home, but I helped him as much as possible, says Pål-Anders and continues:
– There is no life to live. Rolf Olav has only been in a nursing home lately.
FUNERAL: Rolf Olav was buried on January 7, 2022. Photo: Private
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The next year, Pål-Anders was to drive to Steinkjer every other day to take care of his brother. To chat, be together and play music.
December 20, 2021, Rolf Olav falls asleep in his room at the nursing home.
– I wanted to take care of Rolf Olav himself, as I also did with Lars Tore when he died. I washed him, cut his hair and trimmed his beard. It was good, says Pål-Anders.
The family said goodbye to Rolf Olav during the funeral on January 7 this year.
Glenn (44) defies the deadly disease: – Chasing bright spots
– Live life
When Dagbladet contacts Pål-Anders, he is in the process of preparing to sell the apartment to his older brother.
– There has been a bit to sort out, in retrospect, after the funeral and the death. The apartment is just one of the things. It is part of losing someone, he says.
Following the deaths of both big brothers, Pål-Anders has been followed up well with psychologist talks. He also boasts of the follow-up the family has received from the ALS team at St. Olav’s hospital in Trondheim, where both brothers were admitted.
GOING AHEAD: For Pål-Anders, it’s now about moving on in life. Photo: Private
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He says it has been hard for the family.
– It has been absolutely cruel for my parents. That’s not the way it should be. Children should not die before their parents, it is the wrong order. We have a lot to work on in the time and years to come.
Nevertheless, it is now a matter of life going on for Pål-Anders and the rest of the family.
Asked his wife to photograph the road to death
– I have chosen to move back to Eastern Norway now, and return to my job there. I have to get on in life, without siblings. I have no choice, he says and adds:
– For my own part, I am worried about getting ALS, but I have learned that I just have to live life here and now. Life can change very quickly, as I myself have experienced in recent years.
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