Dos Voces, Un Destino: Manteniendo El Equilibrio

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“Alzheimer’s es fatal. Es importante que la familia llegue a aceptar esto.” La primer vez que escuche esto fue en una junta de educación sobre la enfermedad de Alzheimer’s. Estas palabras resuenan en mi mente; ah despertar en la mañana las confrento, en la ducha zumban como un eco, las oigo cuando manejo, y cuando cierro mis ojos en la noche para rezar. Están engravadas en mi subconsciencia.

Mamá descansando, Junio 2013

La dura realidad es que no hay nada que podemos hacer para parar el progreso de la enfermedad. Algún día Alzheimer’s va a consumir lo que queda de nuestra mamá, una mujer que era muy vibrante. El destino de papá sigue por el mismo camino. La enfermad de ellos, Parkinson ‘s y Alzheimer’s, tienen muchos cosas similares. Los científicos han encontrado similares formas de placa de proteína en los cerebros de los que mueren de Parkinson’s y de Alzheimer’s. La enfermedad de papá, Parkinson’s resulta en el perdimiento de movimiento físico. En mamá el Alzheimer’s le causa que se olvide como mover el cuerpo.

Nosotros esperando. Esperando lo que sigue; no poder controlar sus necesidades, el movimiento de sus cuerpos más despacio, la pérdida de movilidad, y por fin no poder tragar. Día tras día podemos ver lo que nos espera. La mortalidad de nuestros padres.

Cuando nuestras amistades se dan cuenta de las enfermedades de mamá y papá siempre hacen las mismas preguntas; ¿Trabajan ustedes y como le hacen para mantener todos los gastos para poder cuidarlos?

La verdad es que no es fácil. El impacto para la familia viene de muchas formas, en lo físico, emocional, y en la financia. La manera en que nos criamos y nuestra cultura latina, de cuidar a nuestros ancianos, es lo fundamental en lo que hacemos. Son los hilos de nuestro sistema de valores. Cuidar nuestros padres es lo correcto. No hay otro pensamiento o opción.

Siempre estamos manteniendo el equilibrio del trabajo y el cuidamiento de nuestros padres. Hay las citas con los médicos y las necesidades personales de las cuidadoras que empleamos. Vacaciones, cuales vacaciones. Para nosotros no hay días de vacación. No podemos des prendernos de nuestras responsabilidades, nuestros padres y el trabajo, sin tener impacto en muchas gentes. Todo esto encima de lo emocional que es ver las enfermedades lentamente consumiendo a nuestros padres.

Mamá y papá trabajaron duro por muchos años. Como inmigrantes vinieron a Los Estados Unidos para trabajar, criar sus hijos, y hacer sus centavitos. La casa que tienen en el área de la bahía esta alquilada. Esto nos ayuda con los gastos que tienen. Nos ayudado pero también ha tenido sus males. La renta es considerada capital y previene que ellos califiquen para programas que sin la renta vieran calificado. Nosotros estamos tratando de cuidarlos lo más tiempo que podemos en casa para disminuir el gasto de sus recursos.

Papá esperando al doctor, Mayo 2013

Con el desarrollo de las enfermedades lo de las financias siempre pasa cambiando. Es difícil mantenernos al nivel de lo que requiere sus cuidamientos. Hay lo gastos que son más o menos consistente: la medicina y las visitas al doctor. También está el gasto de las cuidanderas. Al principio solo había una cuidandera pero cuando papá perdió movimiento el año pasado empleamos a otra. Linda trato de cuidar a papá sin ayuda los fines de semana. Un día cuando Patricio salió a comprar almuerzo, papá querría ir a costarse. Linda trato de levantarlo y no lo pudo sostener. Lo tuvo que recostar en el suelo y llamo a Patricio que regresara a casa para ayudarle. Después de la segunda vez que esto ocurrió donde no lo podía sostener a papá tuvo que emplear ayuda. Ahora tenemos los gastos de tres ayudantes.

Estos remiendos de ayuda que tenemos, juntos con las horas que nosotros los cuidamos todavía es menos costoso que tenerlos en una casa de ancianos. El costo de cuidamiento para nuestros padres en una casa de ancianos, con enfermedades, cuesta $109,000.00 al año. Aun todavía tendríamos los gastos de doctor, medicina, y cosas personales.

Han habido muchos más gastos que no esperábamos. Linda y Patricio tuvieron que comprar un carro donde era más fácil para acomodar a mamá y papá. Ellos no podían subirse en los carros que tenían. Otro gasto fue causado por los daños de agua.

Removiendo los pisos daños por agua, Marzo 2013

Un día Linda se puso hacerles pan dulce Salvadoreño; quesadillas. Ella siempre les hacía quesadilla los domingos en la mañana para que comieran con su tacita de café. Patricio se estaba bañando y Linda se puso a cocinar. Ella oyó cuando mamá se levantó, fue al baño y regreso a su recamara. Después que Linda puso la quesadilla al horno fue a ponerle las gotas en los ojos a mamá y papá. Al entrar a la sala fue viendo lo que parecía agua. Parecía como un sueño. Pero no, si era agua. La agua venia corriendo del baño por todo el pació, las tres recamaras, la sala, y el comedor. Linda fue a buscar a Patricio que le ayudara. Le dijo a mamá y papá que no salieran de su recamara y empezó a poner todas las toallas en el suelo. El único cuarto sin agua fue la cocina. Cuando llego la compañía de restauración a poner abanicos y los deshumidificadores, papá quería estar viendo lo que estaba sucediendo. Mamá al contrario, no se dio nada de cuenta. Pasamos tres meses viviendo como ambulantes, en casa y en moteles. Cuando nos quedábamos en casa, teníamos que usar las perezosas del patio para dormir. Y aun así seguimos cuidando a mamá y papá.

El costo de cuidar a nuestros padres tiene muchas formas. Los consuelos vienen en saber que están bien cuidados con sus seres queridos. Siempre en nuestra mente tenemos la preocupación de cuando ya no vamos poder cuidarlos. ¿Cuando vamos perder el equilibrio?

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“Alzheimer’s Disease is Fatal. It’s important that you and your family come to terms with this.” I first heard these words at an Alzheimer’s Education Forum. They have resonated and become engrained in my psyche. I wake up to confront these words; they echo in the shower, I hear them when I drive, and when I close my eyes to say my prayers. They are embedded in my subconscious.

Mom resting, June 2013

The grim reality is there is nothing we can do to slow or stop the progression of this disease. Someday it will consume what remains of a once vibrant woman, our mother. Our father’s fate is not too far removed from what is happening to mom. He may not be losing his memories but his demise will run a similar path. The scientists are finding many similarities in the protein build up in the brains of those with Parkinson’s and Alzheimer’s. Dad’s disease appears to manifest itself physically first, where with mom Alzheimer’s first affect her mind which results in the physical.

We wait. We wait for what will happen next. The inconstancy, the slowing down of their bodies, the loss of mobility, and finally the inability to swallow. Day by day we can see what is coming, the mortality of our parents.

When people learn of our parent’s diseases, Alzheimer’s and Parkinson’s, they often ask the following questions: Do you work? And how do you afford their care?

The truth is it is not easy. There is a heavy emotional, physical, and financial impact which a family bares when caring for loved ones with these diseases. Our upbringing and cultural norm of caring for our elders has been the cornerstone of why we do it. It’s part of our value system. Caring for our parents is the right thing to do.

We are constantly trying to balance our work with their care. There are doctor appointments or a care provider’s personal needs which will take us away from our work. Vacations, what is a vacation? They are a thing of the past. We are unable to take a week away from it all in order to decompress. All of this on top of the emotional weight of seeing our parent’s slowly being engulfed by disease.

We run on a deficit. Our parents were blue collar laborers. They were immigrants which came to the States, worked hard, raised a family, and created a small nest egg for themselves. Their home in the S.F. Bay Area has been rented out in order to help offset their care. This is both good and bad. The rent helps pay expenses but as a result the home has become capital gains. It prevents them from qualifying for programs that they would otherwise be eligible for. We are trying to care for them in our homes for as long as we can, in order to not deplete their resources.

Dad waiting for the doctor, May 2013

The financial aspect of caring for our parents is ever changing. It is difficult to keep up with their needs. There are some expenses which are consistent: medication, doctor’s visits, and caregiver salaries. The need for a caregiver has grown over the years becoming more costly. For three years we were able to get by with only one helper. Last year, dad lost his mobility and was no longer able to stand. We found that we needed to hire a second helper to assist with bathing and dressing him in the mornings. Linda tried to go for as long as she could without hiring help on the weekends. Until one day when Patricio was out picking up lunch, dad wanted to get up and Linda tried to help him but was unable to support his weight. She had to slowly bring dad to the floor and lay him there. She called Patricio to come back home. It got to the point where Patricio could not leave the house on the weekends. This is when we hired a third caregiver to help out on Saturdays.

The patchwork of caregivers, along with the hours in which we care for our parents is still far less expensive than placing them in a skilled nursing facility. When we priced a facility it would run $109,000.00 a year, plus medication, disposables, and personal supplies. The cost of respite care is $210.00 a day, per person, plus $240.00 for a nurse to come administer an insulin injection to dad, ($80.00 an hour, 1 hour minimum, three times a day). These types of expenses would quickly burn through their assets. They are an indulgence we cannot afford.

There have been many additional personal expenses which we’ve needed to bare. We switched their bed from a queen to twin beds, which a few months later needed to be replaced with a hospital bed for dad. Then we replaced the carpet in their room with linoleum, which is easier to clean. We’ve also had some large expenses; Patricio and Linda had to purchase a car suitable for transporting mom and dad. We recognize now, three years later, we will likely soon need a van with a wheel chair lift. Then there was the Homeowners Insurance deductible caused by water damage.

Removal of our floors due to water damage, March 2013

The water damage occurred on a Sunday morning in March. Every Sunday, Linda would make Salvadorian pound cake for mom and dad; “Quesadilla.” Linda was in the kitchen finishing up her coffee, she heard mom get up, go to the restroom and return to her room. She also heard Patricio in the shower. Linda decided to begin baking their bread so they could have a warm slice with their morning coffee. She gathered the ingredients, prepared the dough, and popped it in the oven. She then was going to begin the process of getting mom and dad ready for the day by placing their eye drops in their eyes. Linda walked from the kitchen into the living room, when she had the surreal feeling of seeing water moving, ripples caused by when she placed her feet down. This wasn’t an illusion. It was real water, running down the hallway from the bathroom. She ran down the hallway to get Patricio. She told mom and dad to stay in their room and headed for the linen closet grabbing all of the towels, placing them on the floor to absorb the water. The water she had heard running was not Patricio showering. It was the water faucet mom had left on in the restroom. Water had run down the main hallway affecting every single room in the house except the kitchen. When the restoration company arrived that afternoon to place the dehumidifiers and air movers around the house, dad wanted his wheel chair placed in an area where he could see everything that was going on. Dad was aware of what had happened. Mom on the other hand had no idea anything had taken place.

We spent the next three months living in and out of hotel rooms. All of our furniture and belongings had been placed in storage while the house was being worked on. Due to the foreclosure crisis we were afraid to leave our home empty while it was being repaired. People were stealing fixtures and wiring out of abandoned houses. When we were home we lived out of the kitchen. A plastic drop cloth separated the kitchen from the dust created by the work being done in the rest of the house. The wood floors, carpets, baseboards, and drywall were all replaced. Our patio furniture, chaise lounge, provided us with a makeshift bed. Through it all we continued to care for mom and dad.

The cost of caring for our parents comes in many forms. We take solace in knowing they are receiving quality care, provided by people who love them. Ever present, in the back of our minds is the seed of concern; How long can we keep this up? When will we reach our tipping point?