In the last goodbye there were no tears. There were four of them: the couple and their two children. "You have to say goodbye to him and you know you have a few hours counted. We did not want to leave sadness for a second. We wanted everything to be like when we were a family without disease, "recalls Ana María Arellano, who at 51 years old has been a widow for eight months. Multiple sclerosis burst into their lives 13 years ago. The diagnosis, four years later, devastated everything. Little by little he was invalidating José María Herreruela. Until one day he could no longer. He was 53 years old. They gave him a hug and left home so that he would end his suffering, only, tell the woman and one of their children, Pablo, who is only 19 years old.
The medication did not calm the pain, they insist. "It was continuous," says Ana. "If it was very intense, that day was a pure howl. That was what you heard. You do not have the tools to calm him, "he laments. "It is very frustrating not being able to help your father, who is suffering," continues Pablo. "Cry. And that day, day after day, day after day, it runs out. There comes a day when he says he can not take it anymore. And you understand, "he explains.
This family assures that the majority dies in anonymity. Their cases do not come to light due to fear of legal repercussions and public overexposure. José María wanted to tell their story and they supported him. But they had not spoken again. They decided to do it after the video of María José Carrasco, also suffering from multiple sclerosis, and Ángel Hernández, who helped his wife die and was arrested for it. "If they were so brave, how could we not step in?" Say mother and son. Miss Marina, the eldest of the brothers, who lives in London. She is also present in his story.
If it was very intense, that day was a pure howl. That was what you heard. You do not have tools to be able to calm him down
"There comes a time when even with palliative care can not cover the physical and mental suffering of these patients. We have to do something. We can not let them die in any way, secretly, alone, "Ana complains." It's not worthy, "Pablo continues. "That they approve a law of euthanasia of a damn time", adds his mother. "Already. You can not extend a year, or two, or 10. Already, "replies the boy.
When it all started, Pablo was just a boy. "I used to go out every day with him to play football. But we stopped doing it. I did not have the strength. We went from everything to almost nothing, "he recalls. "We said that Joseph had the disease, but the diagnosis was of the whole family," says his mother.
One year after diagnosis, he retired. When it got worse, they left for Arevalo, a town in Avila. But his wife also got sick. Chronic fatigue Fibromyalgia Lumbar and cervical problems. The list goes on Monica, her caregiver - "our angel", nuance them - was with José from Monday to Wednesday. On weekends his wife arrived, who lived on horseback between Madrid and Ávila.
He, an engineer, who had been an athlete, a biker, he lived in a double cage: his body and his house. He was a handyman. I mounted model ships. One of them presides from a showcase the living room of his home in Madrid, where he died and to which they moved in 2006, when the first symptoms appeared. Over time, his hands lost the dexterity. And his legs. "I was going through a lot of effort. First, with a cane. Then, walker. Then, the chair, "says his son. You had to dress him and have him undressed. You had to shower him. In recent times, he lost his smile. Therefore, in the funeral home, his family filled a wall with photographs of him laughing.
Jose had warned him many times. "There came a time when he said it calmly. Because before it sounded threatening, like angry. But one day it sounded different, "says his son. They understood "There is nothing more generous than let the person you love be freeIt's an act of love, "says the woman. They had been together for 26 years.
He wanted to stop before being totally incapacitated. He wanted to be able to take the medication that would take him to the end. It was July 25. He had organized everything, as a good engineer. He had had sodium pentobarbital for a year. He left a video recorded for the judge. Medical and psychiatric reports. "What was depressed? Sure, "she says. "But I did not have any mental pathology. It was a very thoughtful decision. "
They went on holiday together and returned to Madrid. "What caught our attention for his last day and a half was his tranquility. We still doubted it, you mixed things, you do not want it to happen, even though you know it deserves it, "recalls Ana." It's hard because you're mourning before you die, "continues his son. "We had a long talk, he and I that day, we said goodbye," he says.
"That night, we had dinner together and watched a movie. The next morning, he had breakfast, he saw on TV the program he wanted to see, "says his son. "I had a scheduled time. When the time came, he said: 'It's time.' We returned to say goodbye, without tears. And we left home, "she continues.
Jose refused to talk about suicide. "He said: 'Why do I have to do it secretly, like this? I also have the right to be taken care of, "recalls his wife. "He was afraid to vomit, for example. But one day he stopped thinking about it. If not, he would not have dared to do it. " He had to end his suffering in secret.
It was already eight months ago. "We have not yet stuck the host," says his wife. "We are on the road. To get used to that is no longer ", he adds. "I've run out of a husband. He, without father. It's all new. When they ask me I say we're fine, despite everything. " In the living room, a photo of him shows the smile that multiple sclerosis I had stolen it.
José María Herreruela contacted the Right to Dignify Dignity association. He decided how he wanted to end the suffering caused by multiple sclerosis. "The worst thing about this disease is that it does not kill you," he told Cadena Ser, where he told his story. "You have to do it yourself or end up in a bed".
I was tired. He designed the way he would come to the end. "It is a chain of suffering. The patient suffers and knows that his family too. The family feels helpless because they can not do anything, "explains Ana María Arellano, his wife.
"I would have liked to have my partner for a long time. Enjoy it. To you, from your father, "he tells his son, Pablo. "To Marina [su otra hija] as well. But he was suffering, "she continues. "It would have been selfish," the boy adds. His family respected his decision. "It has to be a free choice. If I'm dying and I want to die, it does not make sense to decide for me people I do not know anything about, "Pablo ditches.