Nail 800,000 people in Spain, 90,000 of which are in Catalonia, suffer Alzheimer’s and other dementias, according to the Spanish Society of Neurology (SEN). It is a disease suffered, in a very special way, by their relatives (often their caregivers), who ask for to investigate more to find a treatment.
On the occasion of World Alzheimer’s Day, this September 21, EL PERIÓDICO speaks with three people with a sick family member that relate in first person the harshness of this type of dementia that costs families between 20,000 and 30,000 euros a year. The Pasqual Maragall Foundation estimates that, in 2050, the number of patients will triple of Alzheimer’s in the world, due to population ageing.
Eduard Feliu: “We continue to have many signs of affection”
Although they have been married for half a century, she doesn’t always remember whose is he. A Pilar Celma, 75 years old, diagnosed Alzheimer’s five years ago. her husband, Edward Feliu, 79 years old, is the one who takes care of her. “In our day to day we continue to have many tokens of affection between us, even though it’s hard to see how is it changing There are days when He does not know who I am”, tells this resident of Barcelona. “I cook, clean, do many of the things that she used to do. I don’t feel bad about that. What hurts me are those days when I look at her and, with my eyes, I already know how she is: if she knows me or not, if she is happy or not”. Eduard and his children try to make Pilar “be happy with the disease”. “Today for example, with the Photoshoot -he tells EL PERIÓDICO- he has enjoyed it very much, I was elated.”
This is not the first time that Eduard has lived with Alzheimer’s: his dad had already had it (“although at the time it was not diagnosed”) and also his father in law. “Pilar was the director of human resources in a company. She had a lot of stress. She began to have language problems, It was hard to find the words Spatial Orientation… She would go down the street and get lost,” says her husband. symptom began long before the fatal diagnosis. “What remedy is left? You have to accept it. It is about doing everything possible so that the progression of the disease is delayed. Pilar goes to a day center where he performs therapeutic exercises. “But the pandemic and Being confined at home hurt her a lot. They need a stimulus, go for a walk. The worst thing is to isolate them”, Edward specifies.
Inside the bad, Pilar she is not depressed or aggressive. “But you can’t have a conversation with her. And she can’t be alone at home, I don’t dare because, although she has good days, there are days you are disoriented and you can’t trust it”. He counts on the help of his sons (“the Administration helps very little”): “They have agreed to give me one day off a week because I am very fond of photography,” says Eduard. From the Administration it only receives 140 euros per month of the dependency law of the Generalitat, which help pay for the day center (400 euros about four days a week). It also has free public transport.
Jaume Balasch: “It demoralizes me to know that the fight is lost”
“You have been waiting for retirement for a long time and suddenly you receive a news that disrupts your life”. It says James Balasch, 71 years old, whose wife, Mercedes Guerrero, 64, has had Alzheimer’s diagnosed for eight years. Mercedes does not speak and her degree of dependency it is the maximum, three: when she is not bedridden, she is in a wheelchair. He has a degree of disability of 95%. It happened to her like Pilar: the lockdown of 2020 was a downturn from which he has not recovered. Jaume has written a limited edition book about his experience, entitled ‘Mercedes, chronicle of a life together’. He has served “scape valve”.
Jaume and Mercedes have 45 years together. He takes care of her with the help of two other caregivers (one in the morning and one in the afternoon). He finds it “rewarding” to help her and contribute to your quality of life to be “the best it can be”. But he does not hide the pain it causes him to see his wife in this state. “You never get used to it. It demoralizes me especially when you see that, no matter how much you do, the fight is lost. It is a very hard disease”. great mercedes paradox (who was always “a very dynamic woman, with a lot of character”) is that she has a better health than Jaume’s. “It doesn’t have sugar, for example. It has the health of a 64-year-old woman. But his brain doesn’t work like that,” laments the husband.
What disheartens Jaume the most is that Alzheimer’s, which discovered 120 years ago He still doesn’t even have a treatment. She says that she also “demoralizes” him. that there is no more “will to investigate”: there are serious diseases that “progress”, even if they are not cured, but this is not the case with Alzheimer’s. “My wife is a living dead. When she was diagnosed with the disease, she started a cognitive and functional stimulation therapy. but the disease it has no brake. To date, he does not follow any treatment. He depends day by day on me and his caregivers, “she laments.
James complains that The Administration does not help too much either. He has the maximum retirement pension and, with that and the savings, can pay the expenses of the illness: about 3,500 euros per month (between caregivers, medication and creams so that Mercedes does not get sores). Mercedes receives a pension having been recognized as severely disabled. “The area social worker who said that she was only entitled to a volunteer 12 hours weeks, that he wouldn’t come on Saturday or Sunday”, explains Jaume.
Maria Balart: “Seeing how he was losing was hard”
One of the problems of Alzheimer’s in Spain is that there is no census of patients, because there are many people who are not diagnosed. To what extent is it Alzheimer’s or dementia? Something like this happens to the mother of Maria Balart, 62 years old and a resident of Tortosa. “She has not been diagnosed with Alzheimer’s. At 95 years old, she has cognitive impairment and dementia. And we are part of the Terres de l’Ebre Association of Relatives of Alzheimer’s Patients,” says Maria. Her mother’s name is Maria Altes and is admitted to a residence.
The woman has immediate memory loss, He doesn’t remember a lot of things but he still recognizes the family. The woman was recently transferred to the residence. “It’s hard for the person and for the family. My mother was left a widow at 52, but she was always very vital. From the age of 85, on a trip that the two of us took, I realized that I repeated many things”, Maria tells. That’s where the first symptoms began, among which there was also humor changes.
“In the last five years I had lived with me and my husband at home. And there we saw the whole process of forgetfulness, the loss of hygiene, food… She went to bed dressed, she ate things that didn’t go together”, says the daughter with pain. During this five years, Maria asked for a reduction of hours and salary to be able to spend more time with the mother at home. “But months ago she fell, she got a fracture, She had to be operated on and now she can’t walk. Four months ago we put her in a residence because we couldn’t move her,” she says.
his mother has a degree of dependency two and a disability of 80%. Currently receiving a grant from 700 euros of the Generalitat to pay for the square of the home, which costs 1,900. “On a personal level, it has been a difficult process for me. I to my mother, with her good character and vitality -he traveled a lot all over the world-, he always saw her well. Seeing that she was getting lost was hard, “María concludes.