Just over a year ago, Tina Varela, a resident of Los Corales de Buelna (Cantabria), then 69 years old, was diagnosed with amyotrophic lateral sclerosis (ALS). The disease occurs, which at that time begins to manifest itself through loss of balance … Or changes in her voice, which were progressing so rapidly that in recent months it was difficult to move her from bed to sofa and she needed help with everything, even breathing, which she did through the machine. Last week, although she stated her desire to continue living, Tina died.
As ABC reported, doctors told Tina a few months ago that if she wanted to continue living, she would have to undergo a tracheotomy, the opening made in the neck in these patients so they can breathe. When this is done, patients need care 24 hours a day, which is why they need professional care. She wanted to do it, but realizing that she would need constant care after the intervention and without the financial possibility to employ at least one person, she resigned and started palliative care, although she repeated several times that she did not want to die.
“I don’t want to enslave my daughters,” she told this newspaper just a month ago, noting that she felt forced to die because of the lack of help for the sick. Tina (or Tinuka, as those close to her called her) died last week after several recent trips to the hospital. Her daughter, Reyes, says that last month she suffered several crises and was only able to breathe with difficulty until specialists finally chose anesthesia.
“For not sacrificing ourselves”
“With the assistance provided by law, this could have been avoided because she wanted a tracheostomy. “She always said she wanted to live, that she wanted to exhaust all possibilities, and she didn’t want to die,” Reyes laments. Her daughter insists that if she did not undergo the intervention, it was because she did not want the burden of her care to fall entirely on her daughters, who were already exhausted after she took over their mother’s care last year. Tina lived in the living room of her daughter’s house, where the space was modified to suit her. “I’m sure if he didn’t do it it would have been for our sake, because he didn’t sacrifice ourselves. “He rejected his life because he did not enslave ours,” he insists.
The family mourns “anger” and “helplessness” for not receiving assistance despite the law being passed a year ago.
His family is now saddened by “helplessness, anger and frustration.” Tina’s diagnosis coincided in time with the approval of the Amyotrophic Lateral Sclerosis Act, representing a milestone for patients that managed to bring all parliamentary groups to an agreement with one goal: to ensure that patients with this disease and other patients with an irreversible course and with complex needs are cared for in their homes 24 hours a day.
However, the rule was only funded last month, nearly a year after it went into effect and after months of patient pleas. The Ministry of Social Rights approved a royal decree granting the maintenance system to 500 million people and creating the III+ degree of severe dependency. Minister Pablo Postenduy said the benefits would amount to 10,000 euros per month per patient, although the executive would only bear half and the other half would have to be paid by the autonomous community in which the patient resides.
Today, due to this delay in times, the benefits still do not reach homes, as autonomous communities must now adapt their dependency systems to treat these conditions, which in addition to ALS patients include patients with other diseases with a similar course, such as spinal muscular atrophy. Local communities also shamed the executive branch for not working together this year in implementing the rule, because, they argued, that would have speeded up time. In this sense, the State Council also insulted the executive for transferring an “uncertain financial burden” to the autonomous regions.
For Tina’s family, Reyes explains, the approval of the law means “a small hope” of being able to get the help they need, “not financial, but from health workers to help us,” because what they needed were professional caregivers trained to care for this type of patient to help their mother. But time passed and the disease progressed faster and faster without these benefits becoming a reality. In the end, death came before that promised care.
“I feel so helpless because if this help had arrived, my mother would still be here, I’m sure, because she wanted to live,” she cries. Reyes remembers that when a person is so clear in his desire to continue living despite illness, that kind of support can change everything, as it would have happened, he believes, in his mother’s case.
More than a thousand dead
Reyes doesn’t want more patients to continue to find themselves in the situation his mother went through, with the law approved and without benefits that would allow them to continue living. “It’s life. No one is going to pay my mother back, but I don’t think there are many people who can afford four caregivers. “This situation is already unsustainable, and aid must arrive now.” He insists on the “injustice” of forcing someone to die when what they want is to continue living, like Tina.
Since the rule was approved, more than a thousand ALS patients have died waiting for these benefits. According to the calculations of the Luzon Foundation, the costs that must be borne by patients and their families exceed 100 thousand euros annually in the most advanced stages of the disease, so in the absence of assistance, many patients choose not to continue living due to the impossibility of affording it, as patient associations have repeatedly warned.