January 28, 2021

"I do not want to sleep, I want to die" | Society

"I do not want to sleep, I want to die" | Society



The house is full of books and paintings, many painted by herself. María José Carrascosa, a 61-year-old from Madrid, is exceptionally enlightened when she says one word, Pollock, her favorite painter. It will not happen again throughout the interview. In an articulated armchair of a house in the Madrid neighborhood of Saconia, this woman, who was diagnosed multiple sclerosis in 1989, it clearly expresses the objective of the meeting: "I want the end as soon as possible". But it is not easy to fulfill his will. The disease is ending with nerve transmissions and vision and hearing, affected, unable to stand, unable to clean themselves or eat, unable to write, type or use a utensil, without being able to swallow or speak, Carrascosa is completely dependent on her husband, Ángel Hernández, 69, audiovisual technician of the Assembly of Madrid, retired early with 61 to be able to take care of his partner of the last 36 years. A photo in one of the bookstores in the room shows a young couple, pretty, very fashionable in the early eighties. "It's from when we first met," he says.

For the couple, "the ideal would be euthanasia, the law would be approved, but surely in the Congress there will be some initiative of the opposition and it is delayed", affirms Hernandez. The case of Carrascosa would be within the assumptions of the PSOE proposal that has been admitted by the Chamber, since it refers to a serious, irreversible, deadly disease that causes pain that the affected person considers unbearable.

She, a lawyer's daughter, was a court clerk, explains when he gets stuck in telling what he worked for. "Many years ago we both made a living will notary. And already twenty years ago – no one remembers the exact year – with the diagnosis still recent, the woman tried to commit suicide. He found her and saved her. And they talked. "I told him: I do not want to prevent you from deciding, but I think you still have enough quality of life," he explains. When the story ends Hernandez, Carrascosa reacts: "I want to finish now."

This position is the end of a journey of years. They have sought remedies, but, in the absence of family support (they have no children or parents, and only he has siblings, already elderly, who do not live in Madrid), his attempts with the Administration have failed. "We were nine years on the waiting list for a residence," says Hernandez. Then, when she got worse, they changed the request for a request for home help (the law of dependency does not allow receiving two benefits). Of that six months ago. A year ago, he asked to be temporarily admitted, two months, to be able to have surgery for a hernia that had become worse to carry with her. He was denied, and he did not go through the operating room.

Now, your house is your residence. Pulling the partition between two bedrooms have formed her room. "With a lot of light, which is very good," he explains. With the advance of disability, the room has become a small museum of all that they have lost. There is the piano that has not been opened for years – with a drawing that Alberti gave to a relative of Carrascosa on the wall – and the wheelchair that she no longer handles, ready to help her stand up. On an easel, an unfinished painting with an oil lamp, a frustrated lamp that can not grant them the desire they ask for. Dominating the room, an articulated bed and the crane that allows to lift the woman, hanging from her like a bundle, to take her to the living room and to clean her and put her to bed later. Some bulky yellow railings in the corridor show the phases of a disease, when still trying to move alone through the house or go to the bathroom, completely adapted. That is unthinkable. "She has lost 100% of her balance, she can fall even when she's sitting in a chair," says Hernández.

Until recently, her routine was to get up, clean up, eat breakfast, lunch, nap, lounge, a movie-they bought a bigger television because she sees less and less-dinner, bed. "But at the beginning of September we went to the emergency room, I took the vital testament as always, because she does not want to be intuited," she says. That time she suffered an outbreak – "like a mini-stroke," he describes – and she was unable to speak or eat. I had already had another similar one in April. "He spent four days in palliative care, but I brought him home." There they were offered limited sedation to suffer less. She rejected it. "I do not want to sleep, I want to die", summarizes his position.

In that income, they proposed the possibility of a terminal sedation: to sleep her irreversibly. "But they told us that we could not, that they were not going to advance anything" in the end, Hernández says. The Collegial Medical Organization defines this practice as follows: "Deliberate administration of drugs to achieve relief, unattainable with other measures, of physical and / or psychological suffering, by sufficiently deep and predictably irreversible reduction of consciousness in a patient whose death It provides very close and with an explicit, implicit or delegated consent ". And Carrascosa has that suffering that does not manage to remedy the medication, is in an irreversible situation, but his death is not expected "very close". "I have been on hunger strikes, and I know that only with hydration can a person live 90 days." "We can be like this for months, and she does not want to," Hernández despaired.

From that income, Carrascosa eats with difficulty. "Today he has taken York ham, cheese from Burgos, half a kiwi and some coffee, I give it to him in the morning, when it seems that the muscles of the throat are somewhat more relaxed, and then, during the rest of the day, we try not to swallow anything else, "says Hernández. "Already today, with the coffee, which he drinks with a straw, he began to choke." With this difficulty, the idea that she can take life without help is unthinkable.

Hernandez admits that they have asked him to help her die, and affirms that he would be willing to do so. But she has dismissed it out of fear that he will incur some criminal responsibility. "He is not afraid, I am."

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