By: Joaquin Palerm
It starts to get dark in the house in the mountain in Dorado where the family begins to get ready to sleep while she saddens and freaks out. Throughout many years they have faced the Alzheimer’s diagnostic but characteristics have worsened and the most drastic symptoms are being seen. Abilities and preferences have disappeared, dates and talents have walked-out, customs and even hygiene are no longer clear to her.
“My mother was too talented, her painting and drawings still hang from my walls,” Mayra said. “She had four kids and raised eight,” her daughter added. Even though her grandmother was diagnosed with Alzheimer she is the first of her seven brothers to be diagnosed.
Evenings are the hardest. Darkness seems to scare her and her fears become reality in hallucination that bothers her and adds troubles to her sleep. She spends the entire night half-asleep looking for lost things around the house, repeating locations because she forgets where she has been. These sleeping problems are known as the “sunset syndrome” and its unknown why most Alzheimer patients experiment them.
Alzheimer is characterized for causing dementia and there are seven stages in which a patient might find himself for fifteen or twenty years. It takes its name from Dr. Alois Alzheimers who got interested in the symptoms in1906. Its most recently considered a neurological disease in which a protein, that has been identified, blocks the communication and healthy reproduction on neurons. Tests are being conducted in order to eliminate the production of this lethal protein.
“When my mother got married she wished to have many children. Of her four born children two died, which left her with two kids. This is why she adopted more kids,” Mayra commented while thanking her family for all the emotional support. “If it weren’t for their help I could take care of my mother properly”.
Carmen Aida Toro Diaz was born on January 11 on 1939 in the southern city of Ponce where she lived a happy childhood alongside her family. She studied make-up and fashion while she dedicated the rest of her time to taking care of her family, painting and drawing.
“That painting right there was made by me and that one was made by my son,” Aida said. “What are you painting now Aida?”, “I have something somewhere,” she answered trying to evade the question.
She looks lost, with a straight stare in her face and silent. When asked about her house she answers combining and confusing the places she has lived at. It’s a normal characteristic for Alzheimer patients to lose the capacity to store memories, most specifically recent memories. It can be compared to a book being erased from the end to the beginning.
“Her compulsive behavior worries us a lot, she scratches herself like if she had an itch constantly, stores napkins and makes a bag to leave the house because some family member came to pick her up, and goes to the bathroom constantly for no reason,” Mayra said.
“Where is Sara?,” Aida asked while we chatted, wondering about one of her granddaughters. “It’s an everyday question, she asks about family like if they lived with us,” her daughter Mayra said while giving instructions to her mom. The days are very long because Aida has to be helped in all aspects of her daily routine; she has to be fed, bathed, entertained and cared for when she suffers a dementia attack.
There are many sad diseases but what makes this disease cruel is that its terminal without possibility of reversing it. The individual is a great responsibility, caring for them takes guts and love and most of them end up in nursing homes and abandoned by their families. “As long as God gives me strength and will, and her health doesn’t put us at risk so I want her to be with us,” Mayra said with a straight face. “She still recognizes us so there is a little bit left of “mami” in there,” Mayra said laughing.
The most recent statistics provided by “La Sociedad de Alzheimer de Puerto Rico” show that the number of Puerto Ricans that die due to this disease is increasing. It’s necessary to orient about this ‘thief’ of memories that is taking over our aged generation. “People should inform themselves, especially those with probabilities of developing it” Mayra said. “It’s not about just losing our memory; this disease steals the privacy of the patient, his capabilities, his education and his good manners,” Mayra concluded. We must prepare ourselves in order to help our families because only teamwork can even the battle; winning is never possible.
Approaching Aida because her silence worried us, we meet up with a smiling innocent face saying “Joaquin are you leaving to Mayaguez already?” It was only Friday and Joaquin had just arrived to my house.