Every time an extreme case appears in the media where a family is overwhelmed to the limit, the immediate reaction of society is usually judgment. Pointing out, opining from a distance and morally condemning those who care is easy. But what is truly difficult is to stop to understand the complexity behind it: the silent wear and tear, the loneliness and the lack of support that mark the lives of thousands of families with a person with disabilities in their care.
Caring is not a choice or a partial dedication. For many families it is the only possible option, a path that is traveled every day with love, commitment and dedication, but also with an accumulated fatigue that rarely finds relief. Life is organized around that dependent person, and that means giving up, reorganizing, adapting and resisting in a system that does not always make things easy.
The experience of accompanying families shows a clear and painful pattern: aid that never arrives on time, endless bureaucratic processes that force the same documentation to be repeated over and over again, diagnoses communicated without the sensitivity they deserve (probably due to the lack of time required) and, above all, a huge void with regard to psychological support. The public health network barely contemplates caregiving families, as if their emotional well-being were secondary or irrelevant. And the truth is that there is no body or mind that can withstand years of overload without adequate support.
An example shows it very well: a mother is waiting for her son's disability certificate so that he can access a job with ordinary support. But the document does not arrive, and in the meantime she sees him unable to join the workforce, losing heart and feeling bad about himself. She, as a mother, feels more and more disheartened because she knows that with a simple piece of paper her son could have the opportunity to work and feel part of society.
Another family said that, the day they were given their daughter's diagnosis, they only received a report full of medical words that they did not understand. No one explained to them what to do next, or what help they could access.
And these are not isolated cases: it is something that is repeated in many homes in the Canary Islands and that generates an enormous feeling of abandonment.
It is necessary to understand that despair never erupts suddenly. It arrives little by little, in every sleepless night, in every medical appointment in which the patient is talked about but never the caregiver, in every administrative door that closes leaving the sensation of fighting against a wall. When a family receives a diagnosis, they do not only receive a clinical report: they also receive a cluster of expectations, fears, doubts and questions that are often answered with clichés or with a "we'll see". Here appears frustration, loneliness and, in too many cases, institutional abandonment.
It cannot be ignored that caring for a person with a disability implies a degree of dependence that completely conditions family life. That burden should not be assumed solely by the family, and even less so without real support. Because society has a debt to those who care, and institutions have an inescapable responsibility. And yet, reality shows something else: endless procedures, scarce services and aid that, when it arrives, does so late and badly.
It is urgent to stop judging those who care. It is not about justifying the unjustifiable, but about recognizing that loneliness and lack of support can lead to situations of extreme suffering that could have been avoided. Families do not need to be blamed; they need accompaniment, respite, spaces for emotional care and accessible aid that arrives on time.
Those who care also need to be cared for. We cannot continue to ignore that behind every person with a disability there is a family that, on too many occasions, is exhausted and without resources to support themselves. The well-being of people with disabilities cannot be separated from the well-being of those who accompany them.
Therefore, it is time to demand real changes. No more empty speeches or photos in institutional campaigns. What is needed are courageous public policies: free and continuous psychological support for caregiving families, aid systems that do not depend on endless procedures, honest and empathetic communication from the first diagnosis, accessible and sufficient respite services.
And here in the Canary Islands, this demand is even more urgent. We cannot continue to allow insularity to be an excuse for families to wait longer, have fewer resources or face longer and more complicated processes than in other communities. The Canary Islands institutions have the responsibility to guarantee agile, humane and effective support. Families cannot continue to carry alone a task that should be shared.
Because caring should not mean living trapped in hopelessness. Because no caregiver should feel invisible. And because a just society, and responsible administrations, do not judge those who care: they support them.
