Menchu Perez Y Aina Coloma they are 53 and 34 years old respectively. The first lives in Barcelona; the second, in the Roca del Vallès. They do not know each other, but both share a reality: they both know what a palliative care unit.
Menchu’s partner died in February due to colon cancer and was hospitalized for the last 15 days in the Hospital of Santa Creu i Sant Pau. For her part, Aina has a two-year-old daughter with a brain tumor who visits the palliative care unit three times a week. Vall d’Hebron. They both arm themselves strength to tell your story.
Menchu Pérez: “They gave me emotional peace of mind to endure it”
Menchu Perez only have words of thanks for the Palliative Care Unit of the Hospital de la Santa Creu i Sant Pau (Barcelona). The team of this unit, made up of doctors, nurses, psychologists and social workers, was the one that attended to his partner, the photographer Jordi Roviralta, in his last months of life. Jordi was 55 years old when on February 5 a colon cancer, he had been dealing with for a year and a half, he took it away. “There [en la unidad de paliativos] there’s a super team that prepares you before death. They tell you, with great delicacy and warmth: ‘Let’s get to this point,'” Menchu tells from the living room of his house, in the Barcelona neighborhood of Gràcia.
jordi was wearing a year and a half ill. Initially, the prognosis was good. But one septicemia (a blood infection) stopped the treatment I was receiving. Meanwhile, the cancer spread to his lungs. They operated on him, gave him chemo and radiotherapy again. “But he had already resisted too much”, recounts his wife. Although Jordi had been treated by the Sant Pau palliative care team for more than two months, he was admitted to the unit 15 days before he died. “It was going to be a couple of days, but it was 15,” she says.
he was always informed of everything From the first moment. Since the day the oncologist told him there was “nothing to do” anymore. “We both came home crying. But the palliative care team helped us a lot right away. They guide you, they tell you: ‘Let’s do this.’ at no time do they mention the word death. They tell you: ‘We already know where this is going to end’. Always with a lot of tact” Menchu remembers. He highlights that the toilets not only gave Jordi the typical medical visit, but also stayed talking with him.
“They tell you, with great delicacy and warmth: ‘We are going to get to this point'”
Jordi was helped a lot by the classes art therapy that he drank in the unit. She expressed “what he felt”. Furthermore, he also had the support of a psychologist that he treated not only him, but also Menchu and her daughter, who for Jordi was like a biological daughter. Menchu continues to visit today with this same psychologist, in the hospital and as part of the care provided by the palliative unit to the relatives of the sick.
Menchu was with Jordi for the last 15 days sleeping in the palliative care unit. And, “when he left,” he was accompanied by her, a friend of hers, and her daughter. “The last days were very hard because he did not want medication or painkillers. He wanted keep living, keep listening. The last moments were very bad and they put him on stronger medication, “says the woman. She does not know, she admits, if he left “happy”, but she does know that He went “quiet”.
“The hospice team gave me the strength needed to face death. For me this preparation was super important. I left touched, it was horrible, yes, but they gave me the emotional tranquility to say to myself: ‘You can take this.’ Jordi was my life, we had been together for 14 years and Losing him was a trauma for me.” Menchu account.
Now, she admits, she has her “moments”, although she considers herself “positive” (“He would like me to be like this”, she specifies). At 53 years old, she has just found a job as an administrative assistant in a veterinary laboratory. “I’ve had days of anger, but with anger I don’t solve anything. I try to remember the good times and everything he taught me: to believe in myself, to have confidence in myself, to believe in love and, above all, to believe in respect”, concludes Menchu. He already has some plans for the future: “Perhaps some work here at home. And travel”.
Aina Coloma: “They teach us to take care of Lara from home”
In September 2020, when Laura was only six months old, arrived a diagnosis that changed “forever” the reality of his family. “They tell us that he has a brain tumor. Our true family history lies there, that September 25, 2020″, says his mother, Aina Coloma. Aina and her partner have three children: one who is six years old and two twins (one of them, Lara) who are two. Vall d’Hebron, the same hospital where Lara had been born prematurely in February, diagnosis the little girl’s illness.
The family then begins a “maelstrom of tests, operations and income” of the baby. the girl passed 13 surgeries, 11 of them at the cerebral level and of very high complexity. As a consequence, Lara developed multiple disabilities. She is blind. “This hospital applied all the resources for Lara to get ahead. Until February 2021. Lara had just turned one year old. She had been admitted to the ICU, blood transfusions, but the disease spreads more than us and the girl enters an end-of-life process,” Aina says.
It is then that she begins to be treated by the Vall d’Hebron Pediatric Palliative Care Unit. “There a reality falls on us: that life is a scarce commodity, even for a baby,” continues the mother. All concerns that she and her partner were living at the time (“why me?”, “why a baby?”) are coping, she says, with the support of the unit’s interdisciplinary team. “We became very focused on following the light that Lara provides us, that she is like a beacon that guides us and that she makes us to be with her in a very calm way”, assures Aina.
“Palliatives are very much related to older people and we don’t know that children may also need it”
In addition, the unit helps them above all to “prioritize the well-being” of the girl. Thus, the family stopped concentrating on “more clinical and medical aspects” and began to focus on the “quality of life” that it can give Lara “despite her circumstances.” “They have helped us a lot. For us it was very important that Lara was at home. And in March of last year, the unit helped us take her home since she would recover the time with her brothers”, says Aina.
What happened after February 2021, when the girl entered hospice? that the weeks go by, “Lara Fights” Y “That which we thought had to happen in an important way does not happen.” “Here comes another very important support for us because the unit understands family dynamics very well and helps us to provide the best for our daughter,” needs the mother. The unit, he adds, serves as “umbrella” of the eight medical specialties who keep track of Lara. “It is a support in all aspects. They know where we come from and know how to accompany us very well where we are going. They help us with care. They offer us a comprehensive help and they have one great human quality”. They also offer Psychological Support.
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Aina does not work because caring for her daughter requires a 24 hour service. Even so, he claims to feel “very grateful” to continue having her “every day”. “She is my strength, my dedication. She has decided to stay with us longer and I can only enjoy it,” says her mother. According to Aina, Lara has changed the “life perspective” of the family. “She has changed her siblings a lot, who live in a different situation at home than other children and are very aware of what her sister is. They have learned to take care of her.” Add.
Despite the fact that the girl is at home with her parents and siblings, she goes to the Vall d’Hebron Pediatric Palliative Care Unit three times per week. “It’s a very important service. Palliative care is very much related to older people and we don’t know what children may also need it,” Aina emphasizes.