ENTREVISTA A KETY AMERIGO – “Voces en mi memoria, relatos sobre el alzhéimer¨

Cuando entrevisté a Kety, su libro estaba aún viajando hacia mi. Mi intención era conocer, de primera mano y de viva voz, el mensaje que la autora quiere transmitirnos a través de sus recién publicados relatos sobre el alzheimer Voces en mi memoria.

Estaba muy interesada en conocer su visión sobre la demencia y sobre las personas que la padecen. Y es que Kety cuenta con un bagaje en el área del cuidado de las personas con alzhéimer que es muy difícil superar.

Además de haber cuidado de su madre enferma de Alzheimer durante casi una década, Kety cuenta con mas de veinte años de carrera profesional dedicados a hacer posible que las personas con la enfermedad reciban los cuidados que diariamente necesitan. Si a esto le añadimos una curiosidad y una sensibilidad innatas para ponerse en la piel de otros, podemos decir que Kety es capaz de entender y empatizar con las personas con demencia de una forma muy especial. Lo hace a través de una mirada que sabe trascender las barreras de la enfermedad y los pesados estigmas que todavía a día de hoy estas personas acarrean.

Kety sabe por experiencia que detrás del alzhéimer siempre es posible encontrar a la persona, con su dignidad y su capacidad para sentir intactas. Y por eso le duele ver cómo muchos familiares se quedan enganchados en los síntomas visibles de esta enfermedad y pierden la maravillosa oportunidad de poder pasar un buen rato con su ser querido cada vez que van o no van a verlos a la residencia que ella dirige.

¿Qué dirías a las personas que en estos momentos tienen a su ser querido con alzhéimer y no saben muy bien cómo relacionarse con ellos?

Sin duda alguna, el primer paso es asumir la enfermedad. Es duro ver a tu madre o a tu marido comportándose de una forma que no entiendes ni reconoces, a veces incluso ¨socialmente incorrecta¨. Pero no podemos quedamos enganchados en ello. La clave, según Kety, es normalizar la enfermedad, aceptar este cambio de comportamiento en nuestro ser querido, y poner nuestro foco en la persona que habita detrás de ella. Incluso aunque ésta ya no nos reconozca, nosotros a ellos sí y eso es lo que importa.

Kety invita a los familiares a olvidarse por unos momentos de la enfermedad y concentrarse en disfrutar al máximo del encuentro con su ser querido para así aprovechar y gozar esos ratitos juntos. Ratitos que siempre son posibles y que incrementan la sensación de bienestar tanto de la persona con la enfermedad, como la del familiar.

Tan sencillo o tan difícil – según se mire – como estar dispuestos a acompañarlos, hablarles, sonreír, o sencillamente “estar” con ellos sin otra expectativa que la de de disfrutar de ese momento juntos.

¿Qué mensaje quieres enviar a los lectores de ¨Voces en mi memoria¨?

Ya desde muy pequeña escribo porque me ayuda a expresar lo que siento, y con estos tres relatos inspirados en historias reales, he querido plasmar el sentir de las personas con alzhéimer. Partiendo de la base de que es complicadísimo saber exactamente lo que pasa por la cabeza de estas personas, es cierto que el hecho de llevar más de veinte años en contacto diario con ellos y con sus familiares me ha permitido entender bastante bien esta enfermedad.

Con estos relatos pretendo poner mi granito de arena para poco a poco ir normalizando esta enfermedad que hoy afecta a tantos seres humanos y que a pesar de ello sigue siendo desconocida y temida.

Me sigue sorprendiendo ver a personas jóvenes y muy bien formadas académicamente a quienes les cuesta muchísimo asumir la enfermedad de su padre o de su madre. Se avergüenzan de sus nuevos comportamientos y muchas veces veo cómo esa frustración les lleva a estar “sin verdaderamente estar” con su ser querido cuando vienen a verlos a la residencia. Esto genera estrés y sufrimiento en ambas partes.

Como directora, me resulta muy fácil distinguir a aquellos familiares que disfrutan del encuentro con su ser querido. Los distingo porque son capaces de amoldarse al estado de ánimo de este y a sus necesidades de ese día, y también porque sonríen a pesar de todo.

Recibí el libro de Kety hace unos días y me dejé sumergir en las historias de sus protagonistas. Personas increíbles como lo somos todos y cada uno de nosotros, con unas historias fascinantes y muy humanas. Unas personas que aunque a día de hoy no puedan ya recordar muchas de sus aventuras vividas, estas siguen existiendo íntegras en cada una de sus células, así como en la mirada de aquellos que los quieren y saben reconocer y respetar su dignidad y su esencia.

Susana García Pinto

Co-fundadora de “Moving your Soul, otra manera de vivir el alzhéimer”

Autora de “La Luz de tu silencio, la vida al otro lado del alzhéimer”

Your father is late today

“Hello mum”.

“Hello Darling.  Here I am, waiting for your father who is late today”.

“Don’t worry mum, he must have had a late meeting.  You know he is always longing to leave the office to get home to you. (When she hears this, Maria’s face lights up)”

“Yes, he is a very good man; when we were dating there was never a day when he didn’t come and see us when he left the office and it was a long way away too.  What a man!  (Maria has a big smile on her face)”

“But he’s late today…….I’m going to start laying the table (her expression becomes worried)”.

“Yes mum, let’s go into the dining room, I’m getting hungry”.

“You have always been such a good girl, you take after your father.  By the way, it seems that he is late today”.

“Yes, it’s strange; he must have had a late meeting.  Because he is always longing to leave the office to get home to you. (Maria’s face once again lights up, while her daughter Raquel gently takes her hand and leads her to the care home dining room)”.

It is not unusual for someone with dementia to become immersed in scenes from their past.  At those times – minutes, hours or days – it can difficult for us, their family members, to communicate with them; because even with the best intentions in the world, we think our only option is to correct our loved one’s “error” and bring them back to “reality.”  To our reality.

But, what error?  What is reality other than the present moment?  That sigh that follows on from the previous one and that never returns and never left.  And what about if we were to travel with our mother to where she is? If she has an 8 year old daughter and is impatiently awaiting her beloved to eat dinner, why can we not open our minds and meet her there?  Let us become that 8 year old girl who, with her mother, excitedly awaits the arrival of her father.  And let us enjoy the brilliance and wonder on Maria’s face when she realises how much her husband loves her.

Susana García

Moving your Soul

The Impact of Emotions

Someone once said: “It is easier to erase a bad memory than the emotion generated by that bad memory.” Our feelings and emotions color our lives, from the cradle to the tomb and this ability to feel moved and to experience a wide range of emotions: love, joy, fear, anger or pain persists until the end of a human being’s life. This is, of course, also true of persons affected by Alzheimer.
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Receiving more than giving

Ever since Alzheimer showed up in our lives to stay, my husband and I have become more affectionate with one another. Now he shows me every day that he loves me as I show him, and not only by taking care of him daily. Until not long ago, when we would sit side by side in the sofa alone, he would look deep into my eyes and with that Andalusian accent of his and that smile of his that has always dazzled me, he would say: “you are the most wonderful woman in the world.”

These days when words don’t always come out, we simply kiss, we stare into each other’s eyes, we hold each other’s faces; we speak with gestures and smiles. During those moments, I feel truly fulfilled.

Although taking care of him throughout these years has not always been easy, I feel I receive much more than I give. He makes me feel secure.

Trinidad Pinto, España

Heart broken open

I met and married my soul mate Jim fourteen years ago. He was everything I wanted in a relationship and we made wonderful plans for our future together.

After two years of marriage he experienced his first bout of cancer where he had his upper left dental arch removed. Fifteen months later he had another more serious bout of cancer which required removing his lower left jaw, replacing it with his fibula, and radiation. His recovery took a long time.
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From reason to emotion

I feel especially connected to my father in the moments when I get him to smile, and that tends to happen when he comes to greet me, when I arrive at the home. It also sometimes happens when he shares his jokes with me. His sense of humor is pretty incoherent, but it’s still there.

I can perceive how strong my father’s need to communicate is. To a great extent, he’s aware of his cognitive deterioration; he knows he has difficulty expressing himself and that it’s an effort for everyone else to understand him. My tactic is to be especially attentive to everything he says. He sees the effort, and appreciates it, which helps take the conversation that much further. Knowing what he likes and his points of view also helps me immensely. Thanks to that, starting from words that don’t seem to be coherent, I manage to get what he’s saying and maintain a certain level of dialogue.
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Magical things happen

I am 63, my mother is 90. I am still working. She lives near me in a retirement home with extra help. I see her everyday and see myself as her general coordinator rather than her caretaker.

Before I can feel connected to my mom I must make space for it.

This is after I have had some time to process my own grief and come to an acceptance of what is, her loss of her former self, and drop my own agendas, both emotional and domestic. This is only one sentence, but it is hard work. To feel connected, I must sit with her, and let everything go: the laundry, the grocery list, especially my own impatience or fatigue.

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Letter to my Mother

You have distanced yourself from the past and maybe you don’t know about the future anymore. But for me, you’re here in the present.

I still feel your mother’s love, with the certainty that it is more intense than before. You still give me shivers of happiness in exchange for nothing.

Your memories disappear, and I try to rescue them to bring them to the deepest parts of my heart. I refuse to let time be responsible for forgetting.
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Transforming my feelings

My mother has Alzheimer, so-called stage 4-5 If I am correct. This means she has almost no memory for facts . In general she is only able to follow a conversation for the length of two sentences and she increasingly has difficulty finding the right words. Last week, she kept on praising the “Blue Rain”, and it took a while before my brother understood she meant the beautiful blue sky.

Writing this, it would seem there is few possibility to have any sense making and meaningful conversation with her. However, the opposite is true.

Yes of course, when I focus on real facts and happenings, reasoning and argumentation, analysis of options, decisions to take, checking the truth quality of her stories, there is no way on earth we could have a satisfying conversation at that level of reality.
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