Spanish Woman with ALS Faces Difficult Choice as Promised Aid Remains Delayed
Despite a landmark law passed over a year ago, critical financial assistance for amyotrophic lateral sclerosis (ALS) patients remains inaccessible, leaving individuals and their families to grapple with impossible decisions.
A year after Spain’s Congress of Deputies unanimously approved a national law aimed at supporting those living with ALS, the reality for many remains unchanged. In Los Corrales de Buelna, Cantabria, 70-year-old Constantina Varela, known affectionately as Tina or Tinuca, is confronting a heartbreaking dilemma: forgo a life-extending tracheotomy due to the financial strain it would place on her daughters, or continue to live with a rapidly progressing disease and limited support.
Tina’s journey began in October 2024, coinciding with the legislative approval of the ALS law. Initially experiencing subtle symptoms – a slight tilt in her walk, falls, changes in her voice, and choking – she received a diagnosis of amyotrophic lateral sclerosis on October 29th. However, the family delayed sharing the full extent of the diagnosis with Tina for five months, fearing her profound fear of death. “My mother was very afraid of death and we asked the neurologist to put makeup on her,” recounts Reyes Torres, one of Tina’s daughters. “We didn’t tell her that I had ALS until five months later,” she admits, now regretting the decision as it robbed her mother of precious time to prepare.
Now, with the disease significantly advanced, Tina remains resolute in her desire to live. However, she recognizes the immense physical and emotional toll her care takes on her two daughters, who provide round-the-clock assistance with everything from cleaning and feeding to medical appointments and breathing support. The family’s limited financial resources preclude the possibility of hiring professional caregivers.
Initially, Tina expressed a willingness to undergo a tracheotomy – a surgical procedure to create an opening in the neck to facilitate breathing – but quickly realized the implications. “At first they told him that if he wanted to extend his life he had to have it done. And she, crying, said yes, that please she wanted to live, that we should not let her die,” says Reyes. However, the requirement for 24/7 intensive care following the procedure, necessitating at least one additional hired caregiver, proved insurmountable. “I don’t want to enslave my daughters,” Tina communicated, typing her message on a keyboard with one of the few remaining functioning limbs.
Her physical condition continues to deteriorate. Tina is now largely immobile, requiring a crane to be moved from her bed to a sofa. Communication is increasingly difficult, and she has not been provided with assistive technology to allow her to speak through eye movements. Despite these challenges, Tina maintains a positive spirit, expressing gratitude for her daughters’ unwavering care and a longing to continue enjoying simple pleasures like walks. “I trust in God and the Virgin. I cling to that,” she shared.
The delay in implementing the financial aid promised by the ALS law has exacerbated the situation. Last Tuesday, the Spanish government finally approved a royal decree-law to fund the legislation, allocating up to 10,000 euros per month per patient, with the autonomous communities responsible for covering half the cost. However, patients remain skeptical, believing that the benefits will not be realized for months as regional dependency systems are adapted. Tragically, over one thousand individuals have died while awaiting this crucial support.
“I would reconsider the tracheostomy, because I want to live,” Tina reiterated, highlighting the potential impact of timely assistance. Her daughters continue to urge her to reconsider the procedure, but Tina remains firm in her decision, unwilling to burden them further. Reyes, currently on sick leave to provide full-time care, acknowledges the unsustainable nature of the situation. Tina’s prognosis remains uncertain, but without the tracheostomy, her remaining time could be limited to “until the machine she uses to breathe says ‘this far.’”
The family’s experience underscores the urgent need for swift and effective implementation of the ALS law. “I cannot understand that with a law approved there are people in this situation, without any help,” Reyes laments. Tina’s poignant words encapsulate the frustration and despair felt by many: “I feel a little abandoned and forced to die.”
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