Sarah Vitarela’s life changed 8 months ago when doctors told her that her 50-year-old mother suffered from frontotemporal dementia (FTD), the same rare and incurable neurodegenerative disease that 67-year-old American actor Bruce Willis suffers from.
A brain degeneration “too little known” for the young woman. Often associated with Alzheimer’s disease, it is social behaviors and language that are impaired in FTDs, not memory.
At just 24 years old, this supermarket cashier near Pau (Pyrénées-Atlantiques) believes that “she had no choice” but to resign in the disaster at the announcement of this news, in order to save herself and take care of her full-time of his mother Beatriz. In just a few months, this “woman full of life”, a maintenance worker who raised her three children alone, lost all autonomy.
Two long years of medical wandering
Apathy, personality change, paranoia, indifference… The first psychiatric symptoms of this neurological disease really began two years ago, but the family remained for many months in the blur of medical wandering. “Neither we nor the doctors understood. We no longer recognized our mother, but her symptoms were difficult to explain, ”she recalls.
Sarah remembers, for example, that it suddenly happened to Béatrice to “leave lit cigarettes on the kitchen counter. She could also go call her neighbors and get angry because they didn’t come to help her. To tidy up her cupboards… She was going in in a black rage, something I would never have done before.”
“In the ER, they sent us home telling us that he was doing comedy. They told us about depression, epilepsy… she was twice hospitalized in neurology, but no one could point out what she really had.
“The onset of the disease is insidious,” confirms Isabelle le Ber, neurologist at the Pitié-Salpêtrière Hospital and ICM researcher in the team of molecular bases, pathophysiology and treatment of neurodegenerative diseases. “When not all of the suggestive symptoms are met, there may be confusion with a diagnosis of depression or Alzheimer’s disease.”
“Like a Dependent Child”
But since the diagnosis made last June, the former cashier has seen her mother decline day by day. “It’s as if she has a child in charge: 24 hours a day, 7 days a week,” Sarah confesses to BFMTV.com, that she can no longer leave her alone because “her condition is deteriorating very quickly.” Sarah describes a woman “increasingly disoriented”, “in her world, a bit like a zombie”. According to her, her mother has lost “all notion of time and space.”
“Even her appearance has changed in a few months. She can no longer dress herself, she begins to not be able to walk, she has behavioral problems such as crying loudly or attacks of aggression,” says Sarah Vitarela.
Cooking, going to the bathroom, taking medicine, walking… Her life is now marked by the care she gives her mother. But also through cognitive stimulation appointments, supposedly to improve Beatrice’s comfort, such as physiotherapy, speech therapy or psychiatry. Not to mention the heavy administrative procedures that she has to carry out alone so that her mother’s disability is finally recognized by the MDPH (Departmental House for the Disabled -which is not yet the case due to her age), that she can be fired for disability as it should be, or expect accommodation adapted to your physical condition.
Even at night, she is not calm. Due to her sleep problems, Béatrice wakes up every night between midnight and 2 am wanting to talk, eat or even take a walk. She “has become very demanding, she can’t stand the frustration anymore and she doesn’t realize the workload at all” that all this represents.
The ingenuity and sacrifices of caregivers
“It’s super difficult to live with. I had to put my life aside,” admits Sarah, who wants her mother to stay home as long as possible. She says that she dedicated herself more than to her brothers, since the first one is the mother of an 8-year-old girl and her little brother is younger than her.
“Honestly, the caregiver experiences the disease as much as the patient!” he points out. “Not only do we suffer, but we also have the impression of having to fight against the whole world.” Last summer, her employer, for example, refused to fire her so she could collect unemployment. Due to what she considers a “sheer lack of understanding,” Sarah says she is “forced to find solutions” to get ahead financially.
“The different administrations make me laugh,” this caregiver still laments, who must juggle every month between the 500 euros of her mother’s disability pension and the 500 euros of RSA that she receives. “They tell me not to worry because in the long run they are going to compensate me… Meanwhile, when you don’t have money on hand, you have to advance all these costs!”
The only help that she really benefits from, according to her, is that of the France Alzheimer’s association, which immediately took care of Béatrice. Once a month, her volunteers take her on a group outing, to give Sarah a little time to breathe or “get through the paperwork.”
Last August, Sarah wanted to create her Tiktok account “Le combat de Béa”, in order to highlight this disease that “many people don’t know or understand at all. We even see it within our family.” De la sorte, elle souhaitait aussi documenter l’évolution de la maladie de sa mère, d’avoir des souvenirs des moments heureux avec elle, “quand elle pouvait encore danser, marcher, parler. Car malheureusement, on sait très bien à quoi s ‘wait”.
Source: BFM TV
