On the occasion of World Alzheimer’s Day, this September 21, EL PERIÓDICO talks to three people with a sick parent which tell in the first person the hardness of this type of dementia which costs families between 20,000 and 30,000 euros per year. The Pasqual Maragall Foundation estimates that in 2050, the number of patients will triple of Alzheimer’s disease in the world, due to the Aging of the population.
Eduard Feliu: “We continue to have many expressions of affection”
Although they have been married for half a century, she doesn’t always remember whose ONE is it Pilar Celma, 75 years old, he was diagnosed alzheimer’s five years ago. Her husband, Edward Feliu, 79 years old, he’s the one who takes care of her. “In our daily lives, we continue to have many expressions of affection Between us, though it’s hard to see how does it change there are days when He doesn’t know who I am.” says this resident of Barcelona. “I cook, I clean, I do a lot of the things she used to do. It doesn’t taste bad to me. What hurts me is these days when I look at her and, with my eyes, I already know how she is: whether she knows me or not, whether she is happy or not”. Eduard and his children try to make Pilar “to be happy with the disease”. “Today, for example, with the photo session -he tells EL PERIÓDICO- he enjoyed it very much, I was delighted.”
This is not the first time that Eduard has lived with Alzheimer’s disease: his dad had it before (“although at the time it was undiagnosed”) and also his Stepfather. “Pilar was a human resources director in a company. She was under a lot of stress. She started having language problems, It was hard for him to find the words Spatial orientation… She was walking down the street and got lost,” says her husband. symptom began long before the fatal diagnosis. “What remedy is left? You have to accept it. It’s about doing everything possible so that the progression of the disease is delayed”. Pilar goes to a day center where he practices therapeutic exercises. “But the pandemic and being confined to the house hurt her a lot. They need a stimulus, go for a walk. The worst thing is to isolate them”, says Edward.
In the bad, Pilar she is neither depressed nor 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 when she is disoriented and you can’t trust him”. She has the help of her children (“the Administration helps very little”): “They agreed to give me one day off a week because I really like photography,” says Eduard. From the Administration, he receives only 140 euros per month of the Generalitat’s Dependency Law, which helps pay for the day center (400 euros approximately 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 your retirement for a long time and suddenly you receive a news that changes your life. He says it James Balasch, 71 years old, including the wife, Mercedes Guerrero, 64, has had Alzheimer’s disease for eight years. Mercedes does not speak and she degree of dependence it’s the maximum, the three: when she’s not in bed, she’s in a wheelchair. He has a degree of disability of 95%. It happened to him like Pilar: the confinement of 2020 was a downturn from which he has not recovered. Jaume wrote a limited edition book about his experience, titled “Mercedes, chronicle of a life together”. He served you “Exhaust valve”.
Jaume and Mercedes carry 45 years together. He takes care of her with the help of two other carers (one in the morning and one in the afternoon). She finds it “rewarding” to help her and contribute to that their quality of life is “the best possible”. But he also 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 what you do, you’ve lost the fight. It’s a very tough disease.” mercedes great paradox (who has always been “a very dynamic woman, with a lot of character”) is that she has a health condition better than that of Jaume. “It has no 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 discourages Jaume the most is that Alzheimer’s disease, which was discovered 120 years ago, He doesn’t even have a treatment yet. He says it “demoralizes” him too that there is no longer any “willingness to investigate”: There are serious diseases that “advance” even if they cannot be cured, but this is not the case with Alzheimer’s. “My wife is living dead. When she was diagnosed with the disease, she started a Cognitive and functional stimulation therapy. But the disease has no brake To date, he is not undergoing any treatment. It depends on me and his caregivers on a day-to-day basis,” he laments.
Jaume complains that The administration doesn’t help too much either. He has the maximum retirement pension and, with that and the savings, can pay the costs of illness: some €3,500 per month (between caregivers, drugs and creams so that Mercedes does not have sores). mercedes receives a Pension having been recognized as a major handicap. “The neighborhood social worker who said she was only allowed one volunteer 12 hours a week, that he wouldn’t come on Saturday or Sunday,” explains Jaume.
Maria Balart: “It was hard to see how she lost”
One of the problems with Alzheimer’s disease in Spain is that there is no patient census, because there are many people who are not diagnosed. To what extent is it Alzheimer’s disease or dementia? Something like this happens to the mother of Mary Balart, 62 years old and resident of Tortosa. “She has not been diagnosed with Alzheimer’s. At 95, she suffers from cognitive disorders and dementia. And we are part of the Terres de l’Ebre association of relatives of Alzheimer’s patients”, explains Maria . the mother’s name is Maria Altes and is admitted to residence.
The woman has immediate memory loss, He doesn’t remember many things but 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 widowed at 52 but she was always very vital. From the age of 85, during a trip that we both took, I realized that He rehearsed a lot of things.” account Maria. It was then that the first symptoms began, among which there were also mood changes.
“For the past five years, he had lived with me and my husband at home. And there we saw the whole process of oblivion, the loss of hygiene, food… She went to bed dressed, ate things that didn’t go together, ”says the girl with pain. During this five-year period, Maria applied for a reduction in hours and wages to be able to spend more time with the mother at home. “But months ago he fell, he had a fracture, She had to be operated on and now she can’t walk. Four months ago, we admitted her to a residence because we couldn’t move her,” she says.
His mother has a degree of dependence two and a disability of 80%. He is currently receiving a scholarship from 700 euros of the Generalitat to pay for the plaza de la residence, which costs 1,900. “On a personal level, it has been a difficult process for me. Me, with my mother, with her good character and vitality -he has traveled a lot around the world-, he has always seen her well. It was hard to see that he was losing,” concludes María.