Dos Voces, Un Destino: El Año Viejo
Ya que paso el año viejo es buen tiempo para reflejar en nuestras vidas.
El 2013 fue el año en que abrimos nuestras vidas a todos. Para nosotros era importante contar nuestra historia para que otros puedan aprender de las dificultades que las enfermedades neurológicas causan. En tratar con las enfermedades de mamá y de papá, el Alzheimer’s y Parkinson’s, hemos aprendido bastante sobre lo que es importante en la vida.
La decisión de contar nuestra historia fue algo contra como nos criaron. Mamá siempre guardaba las cosas médicas como secretos de la familia. Ella pensaba que la gente le deseaba los males o que les daba gusto en oÃr de la mala suerte que les callo. Cuando mamá tenÃa cáncer de los pechos no le quiso contar a nadie. Al principio solo le conto a su hermano Guillermo. Él le consejo que les tenÃa que decir a sus hijos.
Quince años después le dio cáncer a Silvia, también en el pecho. Mi mamá le suplico que no le digiera a nadie. Cuando mi hermana estaba tomando tratamiento para el cáncer, a Victor también lo diagnosticaron con una forma de cáncer terminal. VÃctor siempre el rebelde que erra, le dijo a mamá que él le querida contar a sus primas. Cuando VÃctor murió, Silvia todavÃa mantuvo los deseos de mamá de no contarle a nadie que ella tenÃa cáncer. Una noche Silvia tuvo que dormir con su peluca puesta por que nos quedamos a dormir en un hotel con unos primos. Ahora cuando me pongo a reflejar sobre esos tiempos pienso que mamá le tiene miedo a la muerte. Como si en negar las enfermedades ella podÃa guardar la mortalidad de la familia.
La enfermedad de mamá por este lado es una bendición. Mamá no reconoce que ella tiene una enfermedad terminal. Mamá ya no habla del futuro solo lo de lo pasado. Mamá todavÃa recuerda nuestros nombres, aunque no reconoce nuestras caras, pero si responde a nuestras voces. Yo creo que el sentido de oÃr esta profundamente arraigado en nuestras mentes. Por la mañana cuando los gallos cantan mamá me dice, “Oye que bonito canta el gallito, ha pasado cantando toda la mañana.”
Mamá y papá son almas gemelas. Los dos vienen de familias comerciantes y de agricultura. Mamá siempre se preocupa por negociar y papá por la cosecha del café. Otra pación que tienen en común es por pasar buenos tiempos con sus amistades. A papá le gustaba la parranda y a mamá arreglarse para las fiestas y ser social. A los dos les encanta la música. Hasta el dÃa, le ponemos música de sus tiempos y mamá canta con mucha emoción. Ella se recuerda la letra de las canciones. Papá ya no puede cantar o bailar pero todavÃa tiene su humor. Un dÃa me puse a bailar un cha cha chá con mamá y papá nos estaba viendo. De repente me dijo, “Yo puedo bailar el cha cha chá mejor que tú.” Me hiso reÃr.
Este Noviembre le pudimos cumplir uno de sus deseos. Papá se hiso ciudadano de los Estados Unidos Americanos. El trato hace 20 años pero no pudo pasar el examen civil. Esto lo deprimió y ya no trato de serse ciudadano. Hace poco me puse a revisarlas las cosas personales que le empaquete cuando se vinieron de El Salvador y encontré unos papeles de la fuerza armada de los Estados Unidos. Me puse a averiguar con el Departamento de Veteranos y aprendà que papá sirvió en la Segunda Guerra Mundial. Esto nos serbio en consiguiera la ciudadanÃa.
¿Que nos espera el Año Nuevo? En Enero esperamos que también le den a Mamá su ciudadanÃa y sà Dios les da vida en Abril van a celebrar su aniversario de 50 años de matrimonio. Tiempo y salud es lo que decÃamos del Año Nuevo.
Las dificultades que hemos tenido son muchas. En tener un corazón abierto hemos aprendido apreciar los momentos importantes en la vida; una sonrisa, un momento lúcido, una noche de dormir tranquilamente. : ) Hemos hecho el esfuerzo de aprender de las dificultades; usar puertas de bebe o prevenir un desastre con apagar la válvula de agua en el baño que usan. Hemos aprendido olvidar los momentos de agresión, aceptando cuando mamá nos pide perdón por lastimarnos. Aprendimos tomar tiempo para llorar, gozar, y relajarnos.
Lo que el año viejo nos enseño es aprovechar de lo ordinario en la vida; esos son los momentos que nos enriquecen. Tenemos tanto en que dar gracias. Especialmente el apoyo y cariño de nuestra familia, amigos, compañeros de trabajo, y la comunidad. El año viejo nos trajo muchas bendiciones.
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Dos Voces, Un Destino: El Año Viejo
Now that 2013 has come to a close it’s a good time to reflect on the past year.
2013 was a year of opening up our lives to others and sharing the challenges we have faced. Having loved ones with neroulogical disorders, Alzheimer’s and Parkinson’s, brings many trying moments. In sharing we hope to bringing awareness to the diseases and the lack of support for families like ours.
Going public was a big decision for us. As a family we’ve always been private about health matters. Mom was superstitious in her beliefs; any health related issue was guarded as family secret. Mom thought others wished you ill health or would relish in your misfortune. When mom battled breast cancer she didn’t want it shared beyond the immediate family. Initially, she didn’t even tell us because she didn’t us to worry. She confided in her brother, Guillermo, who advised her to tell her children.
When Silvia was diagnosed with breast cancer again mom didn’t want her to tell anyone outside of our immediate family. As Silvia was undergoing chemo, our brother Victor was diagnosed with terminal liver cancer. Victor, always being the rebel, challenged mom’s advice letting her know he wanted to be the one to tell his close cousins he was dying. When Victor died, Silvia continued to honor mom’s wishes of not sharing she had cancer. One night Silvia had to sleep wearing her wig so that a family member who was sharing a room with her at a hotel would not learn of her disease. Reflecting back on those days, I think mom has always had a fear of death. In hiding the illnesses which affected her family she was attempting to deny mortality.
Alzheimer’s disease in this regard has been a blessing for mom. She has no understanding of her impending mortality. She doesn’t speak of the future, only the past. Mom still remembers our names, although I don’t think she remembers our faces, she does respond to the sound of our voices. Sounds must be deeply engrained in our brain. Mom will hear our rooster’s crow and recognizes the sound saying, “Listen to how beautiful the rooster sings. He’s been singing all morning.”
Mom and dad have a kindred spirit. Their farming and merchant backgrounds are very similar. Mom is constantly concerned with negotiating, while Dad is concerned with the crops and the price being paid for the coffee harvest. Another passion which they shared was for having a good time with friends and family. There was a time when dad loved to party and mom loved to dress up and be the social butterfly. To this day when we play music from their era mom will know all the words to the songs. She will sing along with great emotion. Due to Parkinson’s, dad is no longer able to sing or dance but he still has his sharp wit. One day I was dancing a cha, cha, cha with mom. Dad was sitting in his wheelchair watching us dance; he looked at me and said, “I can dance a cha- cha-cha better than you.” He made me laugh.
This past November we were able to fulfill one of dad’s wishes. At 93 dad became a citizen of the United States of America. Twenty years ago dad made an attempt at becoming a citizen but did not pass the civics portion of the interview. The civics portion is difficult; many American born citizens would struggle to pass it. This discouraged dad and he never went back to try again. This frightened mom and she didn’t go to her naturalization interview. Fortunately, when we moved mom and dad back to the States from El Salvador, I packed dad’s personal belongings into a suit case. In looking through his items I found discharge papers from ships in which he had been a crew member, along with a set of dog tags. I sent copies to the V.A. for review in their archives. We learned dad had served during WWII, was honorably discharged, and fully benefit eligible. I don’t think dad was ever aware that he was eligible for Veteran’s benefits. Learning of his service to our country did help facilitate gaining his citizenship.
What does the New Year have in store for us? What we hope 2014 will bring us is time and good health, (without suffering pain). Later this month mom has her naturalization interview; we hope she too will gain her citizenship. Then in April, God willing, we will be celebrating Mom and Dad’s 50th Wedding Anniversary.
The challenges we have faced have been many. In having open hearts we try to grasp on to what is truly important in life; a smile, a lucid moment, and a good night’s sleep. : ) We make an effort to learn from the mishaps; baby gates and shutting off the water valve in their bathroom. We don’t harbor ill feelings when aggression takes place, accepting mom’s apology for hurting us. We make time to cry, laugh, and care for ourselves. We’ve learned to embrace those small ordinary moments which make up our lives. We have so much to be thankful for. Especially, the support and love from our family, friends, co-workers, and community. We have had a blessed year.
Loving, caring and positive families make the difference in all illnesses but especially those with Alzheimer’s. What a great example of a couple working for an end to this disease.