At 49, Beatrice’s children learned that she had frontotemporal dementia. Ignorance of the disease, heavy care, forced resignation, financial difficulties and administrative marathon: Sarah, a young carer from Pau, tells BFMTV.com how she had to “put her life on hold” to take care of her mother.
Sarah Vitarela’s life changed 8 months ago when doctors told her that her 50-year-old mother had frontotemporal dementia (FTD): the same rare and incurable neurodegenerative disease from which American actor Bruce suffers. Willis, 67 years old.
A cerebral degeneration “too little known” for the young woman. Often associated with Alzheimer’s disease, it is social behaviors and language that deteriorate in FTDs, not memory.
At only 24 years old, this cashier in a supermarket near Pau (Pyréenés-Atlantiques) believes that she “had no other choice” than to resign in disaster at the announcement of this news, in order to save herself. care full-time for his mother Beatrice. In just a few months, this “woman full of life”, a maintenance worker who raised her three children on her own, lost all autonomy.
Two long years of medical wandering
Apathy, change of personality, 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 worktop. She could also go and knock on her neighbors and get angry because they did not come to help her. to tidy up her cupboards… She was going into black anger, something she would never have done before”.
“In the emergency room, we were sent home telling us that she was doing comedy. We were told about depression, epilepsy… She was hospitalized twice in neurology but no one could put their finger on it. what she really had.
“The onset of the disease is insidious”, confirms Isabelle le Ber, neurologist at the Pitié-Salpêtrière Hospital and researcher at the ICM in the molecular bases, physiopathology and treatment of neurodegenerative diseases team. “When all the suggestive symptoms are not met, there can 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 I had a dependent child: 24 hours a day, 7 days a week”, confides to BFMTV.com Sarah, who 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 look has changed in a few months. She can no longer dress herself, she begins to no longer be able to walk, she has behavioral problems such as big crying or aggressive spells,” says Sarah Vitarela.
Cooking, toileting, medicine, walks… His life is now punctuated by the care given to his mother. But also through cognitive stimulation appointments, supposed to improve Beatrice’s comfort, such as physiotherapy, speech therapy, or psychiatry. Not to mention the heavy administrative paperwork that she has to manage alone so that her mother’s disability is finally recognized by the MDPH (Departmental House for the Disabled – which is not yet the case because of her age), that she can be dismissed for incapacity as it should be, or to hope to have accommodation adapted to her physical condition.
Even at night, she is not quiet. Because of her sleep problems, Béatrice wakes up every night between midnight and 2 a.m. wanting to talk, eat or even go for a walk. “She has become very demanding, can no longer bear the frustration and absolutely does not realize the workload” that all this represents.
The resourcefulness and sacrifices of caregivers
“It’s super complicated to live with. I had to put my life aside,” admits Sarah, who wants her mother to stay at home as long as possible. She says she devoted herself rather than her brothers and sisters, since the first 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!”, she notes. “Not only do we suffer, but in addition we have the impression of having to fight against the whole world”. Last summer, her employer, for example, refused to dismiss her so that she could receive unemployment. Because of what she considers to be a “pure lack of understanding”, Sarah says she is “forced to find solutions” to get by financially.
“The different administrations make me laugh”, still deplores this carer, who must juggle every month between the 500 euros of her mother’s disability pension and the 500 euros of RSA that she receives. “I am told not to worry because in the long term I will be compensated… In the meantime, when you have no money on hand, you have to advance all these costs!”.
The only help she really receives, according to her, is that of the France Alzheimer association, who immediately took care of Béatrice. Once a month, the 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 his Tiktok account “Béa’s fight”, in order to highlight this disease that “many people do not know and understand at all. We see it even within our family”. In this way, she also wanted to document the evolution of her mother’s illness, to have memories of happy times with her, “when she could still dance, walk, talk. Because unfortunately, we know very well what s ‘to wait for”.
