“He became aggressive and left us in the red.”

From ago two decades that Carmen began to worry. Her husband, who until then had been a “most beautiful person.” and that he was in his fifties, began to be “aggressive” and to “drink”. The family also a lot of money started disappearing. Carmen is the fictitious name of a neighbor from the Vallès region who wants to tell her story, but prefers to to remain anonymous. He fears the social stigma. The one that surrounds the frontotemporal dementia, a neurodegenerative disease that is often mistaken for depression and which leaves life in tatters not only of the ill, but of the family.

“It all started 20 years ago. I was three years without my family doctor taking any notice of me, until one day I told her that my husband had emptied our accounts. He had nothing diagnosed, but I was sure he had an organic problem,” Carmen says. The doctor, until then, did not believe her because physically he was perfect, despite the fact that he drank, smoked and spent a lot (“we are a humble family and we were always in the red”), but above all, most seriously, it began to be verbally aggressive with his wife and children. “He yelled, he didn’t talk. He didn’t ask, he demanded. He did not groom himself, he wore torn clothes…”. Frontotemporal dementia a brain disease that is often also disguised as bad temper, alcoholism or drug addictions.

But that day the doctor listened to him and sent the man to a neurologist in Terrassa. He was the one who, with an MRI, ended up seeing what was happening to her husband: he had frontotemporal dementia. That was 10 years ago, a decade later after he started with the first symptoms. However, despite the fact that he was prescribed a medication, he wouldn’t take it. And he kept spending and spending: “He even spent 400 or 500 euros on bottles of wine and liquor”. Carmen, he assures, came to consider separating, but did not do so because she loves him “too much.” “And I I knew something was up. The painful thing is that a lot of doctors don’t listen to you. It’s a via crucis for the families, he relates.

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Finally, another neurologist began injecting her with the medication. And it is he who puts Carmen in contact with the Hospital de la Santa Creu i Sant Pau (Barcelona), with a lot of experience in this disease and to which families from all over Spain come. But the problems did not stop. “Someone – I never knew who – left him a blank gun my husband and was firing shots in the air. I had to go to the police so that they could requisition it. They also took away his driver’s license: you don’t know how many fines I have paid, it didn’t exist. highway code for him,” explains Carmen. She had to sleep with the latch of her room closed because he saw her as his “enemy”, as the person who was always “contrary” to him.

Disability

Even so, with his admission to Sant Pau everything improved. “Right now he is. very limited, She can barely walk and relies on me to shower. He has a grade two disability. But now you can live with it,” says Carmen. Her husband no longer remembers anything and has to go out on the street in a wheelchair.

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“To me my husband’s illness broke many schemes for me. I was left without life. I was jovial, cheerful, I had wonderful children…. But I thought that I had to take the bull by the horns and and go forward, she says. Today she is the caregiver for her husband, who goes three times to a day center, although there is no specific space for this type of sick person. “I, like other families, I have struggled a lot, but there are those who throw in the towel forThe shouting, humiliation and disrespect”, she explains. Carmen charges a pension of 260 euros a month for dependency: “It’s what my dedication is worth.” he complains.

For her to give with the diagnosis of what was happening to her husband, whom she has never ceased to love, was first a “relief.” but then a “disappointment”, because “this is degenerative and has no cure”. “When there is a sick person of this nature there must be. very strong foundations in the family because it cannot be endured, they shatter your heart.”

There was a day when Carmen’s husband, already diagnosed and before losing his memory, told her something that she has not forgotten: “How could you put up with so much?”.

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