Mariaelena Aguiliar is a promotora (community health worker) living in the San Diego area. She supports her community through implementing local Alzheimer’s education programs. These programs have also helped her own family navigate their personal Alzheimer’s experience.
Mariaelena, why is teaching your community about Alzheimer’s disease so important to you?
I feel very connected to Alzheimer’s disease because my dad was diagnosed with the disease 25 years ago. He just celebrated his 102nd birthday at the end of August.
My family has lived with this disease for decades, and because my family has been dealing with this devastating diagnosis for so long, I know firsthand how hard it can be.
I started as promatora in the field more than 10 years ago, with a focus on a variety of chronic illnesses. When the opportunity was presented for me to implement Alzheimer’s education programs in the community, teaching people about the signs of Alzheimer’s and how to navigate this disease, I was very thankful. I want other people to be educated so that they can become more skilled in helping their own family or other people with Alzheimer’s. This experience of working with the Alzheimer’s Association has been enriching and extremely valuable for me, my family and my community.
It’s very important for me to be in touch with my community so that we can all learn things from each other. Another topic I focus on is measures for a healthier life, which is something anyone can do. I previously worked with the local school district, teaching children about healthy eating habits and how to make better food choices.
What, in your opinion, are steps people in the community should be taking in relation to Alzheimer’s disease?
Our community needs to take action and make better choices about identifying the disease: if you can look for the signs and see a doctor early on, you can prevent having to scramble looking for resources once the disease worsens. People should learn the 10 signs of Alzheimer’s and be aware of any symptoms.
In the Hispanic culture, we are taught to be united as a family. For people diagnosed with Alzheimer’s or dementia, it’s important to support the person as well as the family as a whole. The individual with the disease should be surrounded by compassion and have their family provide patience, care and love during the course of the disease. Staying strong as a family is so important when facing Alzheimer’s.
Can you tell us more about your father’s experience with Alzheimer’s? What about his story can help others facing this disease?
My dad used to live in Tijuana, Mexico. He retired at 65, and was still the same active, outgoing and hardworking person he was prior to his retirement. He read a lot and he spoke with everyone and anyone – everyone knew how friendly he was.
Then things took a turn. My family noticed that he was hostile in some situations; instead of being friendly, he would be aggressive with the neighbors. Then he had a fall and no longer had the ability to stand on his own. My older siblings made decision to bring him to the United States so that we could take better care of him and our mom.
Once dad was with us, we noticed so many signs we didn’t understand. We didn’t even know what Alzheimer’s was at that time … we weren’t educated about the disease and its symptoms. We weren’t prepared for what came next.
One day Dad went for a walk and didn’t return home. My mom and sister were so worried.
Hours later, a police officer brought my dad home. Evidently, he was unable to make it home on his own. Based on that experience, the police officer suggested we make a small sign to hang around dad’s neck that included his name and phone number in case we faced this type of situation again. Then the police officer alerted us to how dangerous this situation really was. Dad had a tendency to carry a lot of money in his pockets, because having his funds close to him helped make him feel secure. The police recommended not letting him carry as much cash as he did. That came with some resistance.
After that, my dad would often get mad or disappointed. He had been such an independent man, and now he wasn’t allowed to do all the things he usually did, which made him feel like he had to be completely dependent on us, his family. As a Latino man, this must have been difficult. He was the provider, not someone to be provided for.
It was even sadder when members of my family would approach him to hug him. He would pull away, thinking we were trying to steal from him. Each time, we would explain that we were his family, and we were only there to love and care for him. This usually calmed him down. But things are forever different.
What is life like today, and how does your family continue to push forward when facing Alzheimer’s on a daily basis?
Today, dad is pretty quiet. He doesn’t speak much, and he often seems very down. Still, my sisters and I are here for him, taking shifts to provide him with the most love and care that we can. We recently had a family reunion where we celebrated the milestone of Dad’s 102nd birthday – and all the love we share as a group.
I am so proud of my family, and so grateful to be part of such a united front. We have faced so many challenges together and have come out on the other side. Sometimes we don’t agree, but everything we do is out of love for our dad. We have all grown up on this journey; we’ve learned how to compromise and make best decisions for him.
The love we show our parents is simply us returning a bit of what was given to us. That is part of our culture, and it’s something that we do together. We will keep doing it as long as we can.
10 Signs (content in Spanish)
Facts & Figures (content in Spanish)