When Lucía came into the world, doctors gave her mother a devastating prognosis: there was born with CHARGE syndrome, a rare disease which leads to serious physical malformations and developmental delays. Since then, Esther, her mother, has dedicated her life to overcoming every obstacle: multiple surgeries to reconstruct her cleft lip and palate, hearing, vision and heart problems, as well as tube feeding for five years. More than three decades later, Esther continues to be her daughter’s voice and unconditional support, proving that love and perseverance can overcome any adversity.
How would you describe your day-to-day life as the main caregiver for your daughter Lucía?
My day to day life is constant care, 24 hours a day. I am practically always aware of something, even when Lucía is at her day center, Apache. Even if you have moments of respite, you never completely disconnect. Furthermore, each person with a disability is different. What works one day may not work the next, and you have to constantly adapt. For example, Lucía has many behavioral problems, so that also requires a lot of attention.
What impact has this responsibility had on your life, both professionally and personally?
On a personal level, it is something that changes you completely. You stop being a person with your own life to become, mainly, a mother and caregiver. At the family level, you try to serve everyone, but you always have the feeling of not getting there. I have another older daughter, and especially when she was little, it was difficult to balance everything. That feeling of failing somewhere, of not being able to serve everyone as they deserve, is always present.
There is a lot of talk about the loneliness of caregivers. Have you ever felt alone?
More than loneliness, what you feel is the burden of responsibility. You’re always afraid that you’re not doing enough, that you’re not making the right decisions for your daughter. For example, deciding on operations, therapies or treatments, such as growth hormone, is something that falls exclusively on you. Each decision is a weight, because you know that it will have direct repercussions on your life.
In those moments of difficulty, when you felt overwhelmed, where did you find the strength to keep going?
In them, in my daughters. Lucía and her sister were my reason. He knew he had to hold on, move forward and prioritize his well-being. There were better and worse times, but I always came back to them.
What support have you received from institutions since Lucía was recognized as a dependent person?
At first, none. When Lucía was born, no one explained anything to us. There was no support or information. Everything I learned was by lurching and searching on my own. For example, I didn’t know that family support existed until I came to ASPACE. It was there that I was first guided.
We need specific residences for people with disabilities that guarantee their well-being
How did you find out about ASPACE and what did it mean to you?I came to ASPACE by chance, thanks to a physiotherapist who recommended the center when the hospital stopped treating Lucía. When I entered, I felt like I saw the light. There I found other similar cases and people who understood what I was going through. It was a before and after in our lives. In addition to offering therapies such as physical therapy and occupational therapy, Apache provided me with emotional support and made me feel like I was not alone.
You’ve mentioned the importance of continuity of care. What do you think about current resources and concerns for the future?
Resources are never enough, but at least we now have a support network at ASPACE. My biggest concern is the future. I am 66 years old, and when I can no longer take care of Lucía, or she is no longer here, I worry about what will happen to her. We need specific residences for people with disabilities that guarantee their well-being and continuity, without uprooting them from their environment.
Finally, what message would you like to convey about the role of caregivers?
Caregivers are essential for the well-being of those who depend on us, but we need more support. Facilitating work schedules, recognizing our work and offering us adequate resources would be of great help. We want to continue caring, but we cannot do it alone and face so many difficulties without support.
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