Carles Durà and Cristina Díez, dad and mom of Àlex, his brother, Pau, and his girlfriend, Ana Pascual, on the Caixa Discussion board in Valencia, final October. Mònica Torres
Pau was with Álex till the final second. As quickly as his brother awakened after an evening of anguish or ache, he was keen to arrange an excellent breakfast or no matter dish he requested. He tried to enhance his cooking expertise to fulfill him. Àlex loved gastronomy, images and plenty of different issues in life. He was a significant, inventive younger man, a superb pupil. The 2 brothers went to Sardinia collectively shortly earlier than Álex handed away final 12 months from most cancers on the age of 19. It was his final journey to “profit from time and reside within the current”, based on the ideology that Álex himself expressed in a video recorded weeks after receiving the information that the illness had reappeared.
Pau, now 22 years outdated, left the grasp’s diploma in European Financial Research that he’s learning in Bruges for a number of days to return to Valencia final month and speak about his expertise to be able to assist those that might undergo the identical scenario. A objective that he shares with the remainder of his household and that explains the willingness of all of them to provide his testimony. There isn’t a want for adjectives to affect what the current dying of a son, of a brother, who has not but turned 20 years of age, means. “I need to take this chance to speak about my brother, to speak about one thing that folks by no means need to speak about, dying, and to additionally speak concerning the significance of getting the help of pros, of a psychologist, like us. we’ve had”, he explains within the firm of his mom, Cristina Díez, his father, Carles Durà, and his girlfriend, Ana Pascual.
“He was the absolute best brother,” says the mom. The environment is intense, however contained. She, as is sort of common, didn’t settle for the lethal prognosis at first. “I stirred, I questioned it, I wished extra opinions. I used to be the one who was most afraid from the start. She had two forces that had been pushing one another: hope and concern. Now the problem is to study to reside. I do not need to recover from the dying of my son, I do not need to neglect, however I do need to study to reside with that absence, ”she provides. “He lived intensely throughout the sickness, regardless of the sickness,” says the daddy concerning the two and a half years of hospital, assessments and docs.
Cristina is a philologist and a highschool instructor, like her husband, Carles. Each handle language and are particularly delicate to its misuse. And much more so, when the item of the communication is her son, who suffered from Ewing’s sarcoma, a uncommon sort of most cancers that happens within the bones or the delicate tissue round them, extra frequent in youngsters and adolescents than in adults. On this sense, they miss a particular preparation for professionals when delivering dangerous information. It isn’t simple and it relies upon rather a lot on the power or empathy of every one, nevertheless it is a crucial situation that isn’t paid sufficient consideration. Badly delivered information can stay etched within the reminiscence, regardless of the informant’s good intentions. Silence may also be traumatic. Periphrases, euphemisms are used… “Out of the blue, they began speaking about cooling the tumor and never curing it,” remembers the daddy. “The worst second, nicely, one of many worst, was when the oncologist advised us that he was hopeless. He had not advised us so clearly till then. And I need to know issues as they’re, ”he provides.
“Within the US we’d have been ruined”
Immediately, the household exhibits their gratitude to the professionals and the La Fe Hospital in Valencia, the place their son was handled. “From a medical viewpoint, I’ve no complaints. He has been very nicely cared for, even throughout the pandemic, ”says Carles. “We extremely worth public well being. If we had been within the US, we’d have been ruined”, says Cristina. Pau remembers that the pandemic allowed them to be extra collectively than ever and strengthen complicity amongst all of them, particularly together with his brother. The dad and mom, for his or her half, have verified at school how the confinement as a result of coronavirus has affected the psychological well being of the scholars, multiplying the instances of issues of assorted varieties.
The three additionally coincide in highlighting the function of the House Hospitalization Unit that allowed Álex to be at residence, surrounded by his household, and keep away from visits to the saturated emergency rooms. And so they particularly reward the assistance they’ve acquired from Javier Zamora, a psychologist at Aspanion, a collaborating entity of the Program for the Complete Care of Folks with Superior Ailments of the “la Caixa” Basis within the Valencian Neighborhood, and from his colleague Sonia Pache, Director of the NGO. When all the pieces collapses, the assistance of pals isn’t sufficient typically. The accompaniment of pros is required, insists the household.
The psychologist explains that his job is to advertise the method of adaptation to the illness, cut back ache and issues generated with all accessible assets. As quickly as there’s a prognosis of most cancers in youngsters or adolescents, the reference hospital calls Aspanion, within the case of the Valencian Neighborhood (there are different entities in Spain that present related providers), to enrich the middle’s personal assets. “We provide psychosocial care inside a framework of complete care, not solely emotional and non secular, but in addition socially and economically,” he factors out.
“It is very important present an area for air flow, by which the affected person and members of the family really feel heard to have the ability to specific their anger, their concern, their disappointment, making an attempt to make sure that there isn’t any judgment to be able to assist and normalize these first feelings and begin the therapy. adaptive course of”, explains Zamora. “Brothers, for instance, are often the forgotten ones. It is vitally essential that they don’t really feel deserted ”, she provides.
speak about dying
The psychologist advocates approaching grief with a process mannequin, fairly than phases (denial, anger, negotiation, melancholy, acceptance…) which are overcome. The target is for the affected person to develop an lively perspective. “Society all the time says that point heals all the pieces, however that journey should be wholesome. First, the farewell rituals, then the attention of dying. It is very important put phrases to ache. Many individuals imagine that what isn’t spoken doesn’t exist, however feelings should be expressed, understood and managed to study to reside in a brand new actuality. The subsequent process is maturation, relocate your son in an area inside you and reconnect with life, with new tasks, really feel entitled to reside, though the primary feeling is guilt: I am nonetheless alive and my son has died. Efforts should be made to combine the loss, giving it which means to be able to study to reside”.
Zamora understands how troublesome it’s for some docs to ship dangerous information, however he recommends avoiding any paternalistic perspective. He additionally stresses the necessity to speak extra about dying in colleges or within the media. A declare shared by Xavier Gómez-Batiste, scientific director of the la Caixa Basis program, which funds 65 groups of psychologists and social employees in Spain. “We should study to die”, asserts the additionally director of the Chair of Palliative Care on the College of Vic. “The target of our program is to scale back struggling and enhance the standard of life of individuals with superior illnesses within the subject of most important wants, comparable to psychosocial and non secular ones”, he feedback within the assembly held with this newspaper on the Caixaforum in Valencia, on the event of a convention for professionals organized by the inspiration.
“Álex had extremely developed emotional, mental and non secular capacities,” the psychologist emphasizes. He pau agrees and reaffirms the spirituality of his brother, cultivated in school and in his readings, and that he didn’t must be of a non secular nature. Because of a category challenge, Pau learn and understood the theses of Viktor Frankl, Austrian neurologist and thinker, father of logotherapy and survivor of assorted Nazi focus camps. The creator of the guide Man’s Seek for Which means advocated the necessity for one’s transformation when he can’t change the circumstances that encompass him.
“Within the face of dying, it’s helpful to ask your self questions, suppose, write, replicate or pray. For me, the non secular is the power to comprehend the place you’re and ask your self questions concerning the which means of life. My brother did it and handed it on to us”, remembers Pau.
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