Too young to enter a residence
The family of a 64-year-old man with early-onset Alzheimer's denounces the obstacles to obtaining a public place
BarcelonaA Early-onset Alzheimer's, diagnosed at 58 years old, has brought Lluís and his family to an unsustainable situation. In the last two months, the cognitive deterioration of the illness has accelerated so much that caring for him at home is increasingly complicated, but, for the moment, admission to a geriatric residence is not a feasible or quick solution. When the family has started the procedures to obtain a place, they have hit an unexpected bureaucratic wall: current regulations limit geriatric residences for those over 65 years old, and Lluís is 64 years and nine months old. So, until October, he will not be able to opt for a place through the ordinary route, nor can he join waiting lists. He is too young for a residence.
The only option left is admission through exceptionality, which provides a place for those under 65 if they meet social and health needs criteria. The family understands that their case fits this because Lluís is a person with recognized total dependency and the his main caregiver, his wife, feels physically and emotionally overwhelmed. Rosa Poy explains it emotionally: "I didn't see it, I didn't want to see it, and now that he is admitted I have realized that I'm exhausted, I need to rest.
Following the diagnosis, Lluís had to leave his job as a teacher and found it very difficult to explain his illness. Out of respect for his way of life, this text does not identify him by his surname. However, the family does want to make public a case that, while they are aware it is not common, they ask for more "empathy and flexibility" in response, states his daughter Lúa, who highlights the "paradox" of how a "defender and servant of public education is neglected by public services". This spirit led him to participate in a clinical trial.
La Lúa recounts the "ordeal" the family had to go through for a place in the residence: granting of the severe disability pension, recognition and review of the dependency and disability degree. One day, they invited him to stop attending the day center because his need to constantly wander interfered with the service's operation and affected other users. The professionals recommended a residence for the well-being of Lluís and his caregiver, who had a little respite at those hours. Once again, however, she had to dedicate herself body and soul: "I haven't had a life for two years, always behind him," she states.
Accepting the option of a residence was a "very difficult decision", but the family little thought that it was not a done deal, but rather that they would have to battle between the little information or lack of knowledge of their case even from specialized services, the null accompaniment and solitude. In principle, the idea was to stay "for a few weeks, a month" in a private center. They received a no as an answer from all the nursing homes and they were told about the "exceptionality". At the same time, they were also told that Lluís could not be admitted because he has a family that takes care of him and he is not helpless. Finally, a private residence accepted him, making it clear that "his continuity would depend on how he adapted to living with the other residents". He was not there for even 24 hours, because after a fall he had to be admitted to a hospital, the management already communicated that he could not stay there.
The hope of healthcare attention
The unknown that plagues the family is knowing what will happen when Lluís is discharged. "In the last interview with the social worker, she gave us a little hope, but that doesn't stop us from having had to overcome obstacles for everything," points out Lúa, who summarizes the situation: "The illness is faster than the administration." When he turns 65 in October, he will enter a residence, although if ordinary channels are followed, the process to obtain a public place can take two to three years.public place can take two to three years.
When asked, the Department of Social Rights and Inclusion admits that they are "aware" that there are specific situations that affect people's behavior and can alter coexistence levels. The same sources point out that the integration of the social and health system, which has already begun with a pilot plan in Vic and is to be rolled out across Catalonia in 2027, and the reform of the social services portfolio – the catalog of public services and benefits – "must help in addressing cases like this".