Stein-Anders Rasmussen, who died last year at the age of 54, and wholly paralyzed by the end, had expressed a desire to undergo euthanasia, which is not legally available in Estonia.

According to his family, who witnessed his suffering, the law should be amended as a situation like that which Rasmussen suffered is tortuous.

ALS, also known as motor neuron disease (MND) or (in the U.S.) as Lou Gehrig's disease, is a rare, terminal neurodegenerative disease which results in the progressive loss of both the upper and lower motor neurons, which normally control voluntary muscle contraction.

The cruel disease crept up on the previously healthy and active Rasmussen little by little, with the first symptoms appearing five years ago.

As of 2020, Rasmussen was still in full health, but his wife, Anne-Ly, recalled that the first signs, which they did not connect to the disease at first, were her husband becoming very emotional.

Anne-Ly recalled: "Birgit, our older daughter, was planning her wedding. While we were discussing it, he started crying. Out loud, and with tears. Then, at some point, individual words in his sentences started to become slurred."

Daughter Birgit Villum said these changes were also noticeable during phone conversations.

"On Friday evenings, for example, when I called, it seemed like he had been drinking beer — he started dragging out his words and wasn't speaking clearly," Villum said.

As the problems worsened, the family eventually called an ambulance, and Rasmussen was taken to the capital.

"He was hospitalized in Tallinn for about a week and a half, or two weeks. They read out the diagnosis to me over the phone — mostly to rule things out," Anne-Ly said.

It took almost another month before doctors started to suspect ALS. Another Estonian, Jane Paberit, became the first Estonian to undergo assisted dying in 2019, and had to travel to Switzerland to do so.

"Another name is motor neuron disease. The primary nerve that controls the entire body from head to toe shuts down. Gradually. And the person begins to fade," the daughter said.

There is no cure for the disease, while the prognosis is two to five years.

According to Anne-Ly, her husband had a rapidly progressing variant of the disease.

By the time of his diagnosis, his speech had deteriorated to the point where only close family could understand him. However, his arms and legs still functioned, and he was still able to continue working as a parcel courier, to begin with.

His wife recalled that he could even still drive a car unassisted at that point, and continued to do so for another five to six months.

"Until he finally said that his hands could no longer grip the steering wheel; he didn't have the strength anymore. And then he stayed home," Anne-Ly went on.

"So, for him it began with losing his speech, then his hands, eventually his legs, and in the end, he could only move his eyeballs," Birgit added.

Anne-Ly refused her husband's suggestion to look for a nursing home place for him, and pledged to stay with him until the end.

Stein-Anders soon lost his ability to speak completely, while his hands no longer obeyed his commands. To communicate with loved ones, a small tablet with an eye tracker was brought home, and he could guide the entire system with his eyes.

"He could do everything with it — make calls, send messages. All communication was through it. He wrote words with his eyes, pressed the 'speak' button with his eyes, and the machine said aloud what he wanted to say," his wife recounted.

According to family, the father retained his optimism and sense of humor for a long while despite the severe illness, and his character did not change.

Thanks to the Janno Puusepp Foundation and some generous donors, they were able to obtain a medication costing €1,300 per month, which gave hope to slow up the disease's progression.

"I read studies about it — they say it inhibits things, it may happen that this drug halts the disease for a while. It simply gives you a few more years of life, that's it," Birgit said.

According to Anne-Ly, after the first rounds of medication, there was some cause for hope, because her husband regained the ability to swallow, which he had previously lost – having to eat via gastrostomy.

"Then he could swallow a little, so we had the morning, as he called them, 'pleasure minutes' when he got up. We did all the hygiene routines, I dressed him while in bed, and then, in a semi-reclining position, he could drink a mug of something sweet — syrupy water," she recalled.

"He took the medicine for eight months, but then he said he didn't want it anymore. His skin was as frail as parchment. His arms were covered in bruises — he simply couldn't bear things anymore."

In the last two years of his life, however, the disease only became even more severe. The couple's son had moved back home, and the daughters started visiting their father more often as the mother was already getting exhausted, and had health issues of her own.

"There was a time when getting just three hours of sleep at night was a good night. I had a stroke, then spent two months at home — fortunately I think I recovered completely. It was a very hard time, truly tough," said Anne-Ly.

The daughters then began taking turns staying with their parents. Villum recalled that she mostly did night duty. Their father used an alarm bell to signal when he needed something — sometimes pillows needed adjusting, or his legs repositioning, since he could no longer move himself.

According to Birgit, their father was deeply affected by it all. He did not want to be a burden, but could do nothing more.

Via the eye-operated communication board: "He said, 'I can't take it anymore, I can't do this anymore, I don't want this anymore, please help.' And that happened a lot," Birgit said.

Stein-Anders repeatedly brought up the fact that he wanted to end his life, just as Jane Paberit had done.

"He said, find me some options, I don't want to live anymore, this is torture. Then I told him that unfortunately we don't have any legal option on this. 'I can't take you anywhere'," the daughter said.

According to Anne-Ly, in order to get to Switzerland, the patient needed to be able to swallow, or to move their hands enough to perform the action themselves, but her husband could no longer do those things.

Once a Tartu-based man had started helping people on an unofficial basis, and the case became public, Stein-Anders instructed his daughter to find that person.

"I said, he'd go to prison immediately, there's no chance you could get to him," Birgit recalled.

"He said, then please do it yourself, and I told him that my conscience wouldn't allow for that. I understand him — I would want the same if I were in his position — but my conscience wouldn't allow it. I wouldn't have been able to live with myself."

In the final couple of months, Stein-Anders faded, day by day, and according to his wife's recollection, even his emotions seemed to evaporate — there was no more joy, but no sadness either.

"Once one of his colleagues, when he had just received the diagnosis, said — 'is this the disease where you end up a vegetable in a chair?' In those last days, he did seem like a vegetable in a chair. It is awful to say, but that's how it was. He had lost all muscle mass — I don't know, maybe he weighed only 40 kilograms in the end. When he was lying in bed, he looked just like a skeleton covered in skin — literally so," his wife admitted.

The daughter added that in that final week, their father was no longer communicating with the family.

She remembered: "One evening he was more lucid. We managed to get the tablet to him briefly so he could write, and he wrote 'papa, papa' — like our grandfather, as he used to call him. We asked if he was seeing 'papa.' Then he was only able to respond with 'yes.'"

Anne-Ly Rasmussen said that since the trip to Switzerland didn't materialize, her husband wanted to die at home — and got his wish.

"That was at home, in his own bed, among his loved ones, peacefully. I hope in his sleep. His eyes were closed, and I was sleeping beside him," she said.

Stein-Anders' family have shared their painful story with "Impulss" in the hope that Estonian law can be changed — so that assisted dying would be permitted here, too.

"He said so many times that he regretted not doing it sooner — that he left it too late," Birgit added.

"This definitely should be allowed in Estonia — as this is real torture for all concerned," Anne-Ly summed up.

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