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20 claves para los familiares de enfermos de alzhéimer

21 septiembre 2010 - 0:10 - Autor:

Después de entrevistar el año pasado a Encarnita y celebrar con su vitalidad y optimismo el Día Mundial del Alzhéimer, no he encontrado un personaje que pudiera ejemplificar mejor el coraje y la lucha de una mujer/esposa/familiar por un enfermo. Y dado que encontrar en internet información de valor, útil y escueta sobre esta enfermedad no es del todo sencillo, he decidido buscar dos decálogos que puedan ayudar, de verdad, a un familiar cuidador.

Y nadie mejor que alguien que ha compartido miles de horas con familias afectadas para dar respuesta a las dudas más frecuentes y para lanzar diez consejos básicos. Se trata de Manuel Nevado Rey, psicólogo de AFAL (Asociación Nacional de Alzheimer). Todo el contenido está sacado de dos series de publicaciones realizadas por AFAL contigo y Obra Social Caja Madrid.

EL primer decálogo tiene que ver con las dudas más frecuentes que siempre asaltan a los familiares y que Manuel Nevado Rey ha podido constatar en su trabajo cotidiano. Están recogidas en el libro Cuidados informales en la enfermedad de Alzheimer:

1.  ¿Por qué nos tiene que pasar esto a nosotros?

¿Y por qué no? En España existen cerca de 700.000 casos diagnosticados. Se desconocen  los casos sin diagnosticar o aquellos que están por venir. Según datos de la Comisión Europea, se calcula que para el año 2020 en España existan alrededor de 2 millones de enfermos.

2. ¿Tiene curación?

Tratamiento sí, pero curación no.

3- ¿Es hereditario?

La hipótesis más extendida es que la enfermedad tiene un fuerte componente genético. Hay identificados cuatro cromosomas, pero sólo en un dos por ciento de los casos aproximadamente se puede hablar de transmisión hereditaria.

4. ¿Por qué no quiere salir con las amistades de siempre?

El enfermo es consciente de los fallos de memoria, su capacidad de lenguaje es inferior, cada vez utiliza menos palabras y le cuesta mucho trabajo comprender y expresar, cada vez tiene mayores déficit de atención y, por lo tanto, le cuesta seguir el hilo de una conversación. Por eso se aísla.

5. ¡No me deja en paz, siempre me sigue y me persigue no me deja ni a sol ni a sombra!

Se encuentra inseguro y con muchos miedos, ¿alguien se ha puesto a pensar cómo se tiene que sentir una persona que no es capaz de almacenar los conocimientos adquiridos diez minutos antes? Seguramente tuviera miedo e inseguridad, por ello, aquella persona que sirve al enfermo de guía (cuidador principal) es su referente, y cuando éste falta, el miedo y la ansiedad se disparan, por eso siguen al cuidador a todas partes.

6. Con vosotros sí que realiza la estimulación, pero en casa a mí no me hace ni caso.

Trata de buscar el lugar idóneo para realizar estas actividades, con paciencia, preferentemente evita la caída de la tarde para realizarlas; domina el lenguaje adecuado a la enfermedad que tiene y dale tiempo a responder, reforzándole constantemente cuando algo le salga bien. Estimular a un enfermo de Alzheimer no consiste solamente en sentarse en una mesa a realizar sopa de letras o puzzles. La estimulación ha de estar presente a lo largo de todo el día, al levantarse, en el paseo, haciendo la
comida…

7. ¿Por qué me confunde con su madre?

El enfermo de alzhéimer vive en una especie de realidad virtual en la cual los recuerdos presentes no existen y donde tan sólo habitan aquellos recuerdos aprendidos a lo largo de la vida. Estás cuidando de él, le das seguridad.

En la mente del enfermo puede que se le haya borrado el hecho de que se ha casado y ha tenido hijos, por eso sustituye a los familiares actuales por familiares pasados, que realizaban las labores que actualmente haces. La esposa pasa a ser la madre; el esposo, el padre, y los hijos pasan a ser los hermanos, tíos u otras personas de la época en la que perviven los recuerdos.

8. ¡Cuando quiere bien que se acuerda!

Esta frase suele escucharse con frecuencia entre alguno de los familiares, sobre todo en las fases leves o moderadas de la enfermedad. El enfermo olvida más que nada los acontecimientos recientes; sin embargo, los acontecimientos lejanos permanecen guardados en su memoria. Al mismo tiempo, en las primeras fases de la enfermedad coexisten momentos en que el enfermo puede razonar con lucidez con otros momentos de la más absoluta confusión. Por ese motivo el enfermo a veces recuerda ciertos acontecimientos que nos parecen asombrosos y otras veces no recuerda nada.

9. ¿Él ya no se entera de nada?

Es consciente de lo que acontece a su alrededor, de una manera más limitada, pero lo entiende. Por lo tanto, evita hablar de la enfermedad con otras personas delante de él, los comentarios, sobre todo si son hirientes, pueden entristecerle o llevarle a reaccionar de manera catastrófica.

10. Le preguntas algo y te responde a la media hora.

A su cerebro no se le pueden pedir prisas, si se le atosiga, se bloquea. Paciencia.

El segundo decálogo que os traigo reúne los mejores consejos generales para cuidadores familiares:

  1. Delega los cuidados: pide ayuda.
  2. Cantidad de cuidados no equivale a calidad de cuidados.
  3. Si no repartes tu tiempo entre otros seres queridos, perderás al enfermo y a ti mismo.
  4. La enfermedad es una intrusa con la que debes aprender a convivir.
  5. La enfermedad nunca se amoldará a ti: amóldate tú a ella.
  6. Comparte tus emociones con otros familiares de enfermos.
  7. Observar pronto los pequeños cambios te ayuda a adaptarte a los cambios grandes.
  8. Toma decisiones, aunque a veces éstas sean arriesgadas.
  9. No abandones todas tus aficiones.
  10. Quiérete a ti mismo: en ti está la solución.

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[...] This post was mentioned on Twitter by la_informacion, Luis Alejandro and Luis Alejandro , vicente guillan . vicente guillan said: 20 claves para los familiares de enfermos de alzhéimer http://t.co/y8xEYGj [...]

La enfermedad de un familiar muy cercano que convive con nosotros noa hace sentir que a veces nos asfixia, el enfermo es absorvente y me desespero.

Qué buen decálogo. Esperemos no tener que utilizarlo pero ya son muchas las personas a mi alrededor que sufren directa o indirectamente esta enfermedad. ánimo a todos en este Día.

[...] resultó muy interesante el escrito “20 claves para los familiares de enfermos de alzhéimer”, con consejos prácticos sobre cómo pueden afrontar los cuidadores no profesionales el día a día [...]

ME PARECE MUY IMPORTANTE ,QUE NOS DEN AYUDA MEDIANTE LA RED YA QUE ESTA ES UNA LABOR MUY HUMANA ,YO YA LLEVO 5 AÑOS COMO CUIDADORA DE MI BEBE COMO YO LE DIGO CON TERNURA DE QUE EL AYUDA Y PIENSA QUE,TODO EN LA VIDA ES RECIPROCO NECESITAN MUCHO AMOR AL IGUAL QUE NOSOTROS LOS CUIDADORES.GRACIAS Y MENTALIZARNOS QUE LA VIDA ES UNA REGRESIÓN,UN CONSEJO TEN MUCHA PACIENSIA Y SIMPRE ACTUALISATE SOBRE LA ENFERMEDAD.

Deseo transmitirles mi agradecimiento por tan sabios y útiles consejos.Hace casi nueve años que asisto,con una infinita tristeza, al deterioro de mi madre,de la que soy cuidadora directa.Aunque físicamente todavía está presente en mi vida, la enfermedad se ha ido encargando de apartarla de mí,y la echo de menos. Es muy mayor (va a cumplir 92 años el mes que viene),pero me resisto a dejarla ir. No concibo la vida sin ella a pesar de la dureza que conlleva su cuidado.No sabré qué hacer sin ella cuando llegue el momento y me siento muy asustada.
Son necesarias grandes dosis de comprensión y empatía para poder seguir sin renunciar del todo a la vida, para no abandonarse a la deriva.
Muchas gracias de nuevo.

yo con mi hija hace 7 años que cuidamos a mi madre…lo mas triste es verla cada dia mas deteriorada, ella empezo con su enfermedad a temprana edad tenia 72 años, y la pena es no poder decirle que uno la quiere pero se lo desmostramos y que ella no se de cuenta de lo que le decimos es una enfermedad muy triste ya que ver como se desgastan cada dia es un sufrimiento que pocos entienden …gracias por esta guia.. ya que asi se responde muchas preguntas que uno se hace y que ni siquiera los medicos saben responder con certeza… pero lo unico que nos queda es tener arta fuerza y paciencia como ellos tuvieron con nosotros..aveces ni los familiares mas cercanos a ella le tienen paciencia y gente externa la quieren y lo unico que les puedo decir es que hay que decir las cosas que se sienten…
muchas gracias

Muy buena la guía me gustaría seguir conociendo artículos sobre esta penosa enfermedad

hace diez años que diagnosticaron esta enfermedad a mi mama,teniendo ella solo 56 años.He recorrido muchisimos medicos lo que me ha permitido detectarla tempranamente y comenzar los tratamientos.Hoy donde casi su mente no me registra como hija pero si su mirada ,en el contacto las dos sabemos que nos pasan cosas muy fuertes.Resulta muy dificil llevar adelante esta enfermedad tan larga y dolorosa para todos los que la hemos conocido y el dolor de lo que hoy nos muestra.

Fuerón muy utiles esta guia,mí madre sufre de esta maldita enfermedad que ni siquiera a visa es muy tristever que la persona cambia cada día es un deterioro mental y fisico,la madre que tenía ya no esta la amiga que le contava mis cosas no esta fisicamente esta mí madre fue a un viaje que no volvera.Nadie comprende como se siente es facil decir son cosas de la edad pero vivirlo es muy dificil ver que la persona de antes no exsiste y que por mas que digan son cosas de la vida.

A mami hace 17 years que se le diagnostico este terrible enfermedad. No ha sido facil ver como cada dia se va consumiendo su vida x esta enfermedad. Es triste ver que aquella mujer tan luchadora,trabajadora,este asi, y que ni siquiera jsepa lo que le decimos. Para nosotros es la reina y nuestra muñequita. Pero a la verdad hay que orientarse bien sobre esta enfermedad y el cuidado al paciente para que pueda durar bastante years. Y a la verdad tu vida te cambia al tener un familiar con esta enfermedad.

Hace ya más de diez años que a mi papá le diagnosticaron esta triste enfermedad. Yo la denonimo la enfermedad del desafío al amor, porque hya que tener una fuerza y una resistencia únicas para poder cuidar del enfermo y saber que lo que estamos coherentes somos nosotros. Cuidamos de él mi mamá y mis nueve hermanos y aunque parezca mentira aun tantos no somos suficientes. Yo soy la menor y siento que mi vida y la de mi familia era otra y ahora añoro el pasado, cuando mi papá estaba bien. He perdido el entusiasmo por la vida, a veces me pongo a llorar y aunque mucha gente te dice que te entiende, uno siente quen no es suficiente.Cuando salgo de mi casa al trabajo es otro mundo y regresar es para mí como que te digan esta es tu realidad, afróntala. La mayoría de las personas, incluso muchos médicos no saben cómo tratar a un paciente del alzheimer. Gracias a Dios, después de mucho buscar, en contramos un buen neurólogo, que no ayudó a entender más la enfermedad. Hay que leer, informarse, eso ayuda a sentirse mejor. Dios les dé mucha fuerza a todos los familiares de personas que sufren esta enfermedad. Hay que perdirle Dios que uno tenga el suficiente amor para decir, Aquí estoy Señor, para hacer tu voluntad. Gracias por este espacio

Soy de Uruguay y en el año 1994 después de una tos que permanecía en el tiempo y que mi madre de carácter muy fuerte y dominante no se quiso ver por médico,culminó con un principio de congestión e inmediatamente comenzó su deterioro mental y además físico.Era una persona muy activa y de carácter difícil,nunca tuvo muy en cuenta mis consejos,siempre me llevó la contra y con la enfermedadse puso peor.Soy única hija,trabajo todo el día,estaba casada y la verdad mi vida cambió a partir de ese momento a llenarse de frustraciones,falta de libertad,y menor ingreso de dinero ya que era más el que debía emplearse para gastos de pañales,medicamentos,etc.Las cosas se fueron agravando,me postergué a mí y a mi matrimonio.Finalmente entre lágrimas debí llevarla a una residencial para adultos en el año 1996.En octubre entró en como y salió ya que además tenía diarrea crónica y se deshidrataba con facilidad.Estos tres años fueron los peores de mi matrimonio,no tenía ganas de nada,todo cargaba sobre mis espaldas.Los parientes desparecieron.En marzo de 2007 con 48 años fallece de golpe mi esposo que era todo mi sostén y la persona que más amé.Un viernes nos fuimos a trabajar,le dio un ataque cardiaco en el trabajo,entró en coma y el domingo ya era viuda.Perdí todo lo que era mi vida y seguí peleándola 14 meses más porque no había quien se hiciera cargo de mi madre.No sé como resistí,cuando falleció respiré,ni tiempo para el duelo de mi esposo había podido hacer.Al mes tuve tendinitis,bursitis,capsulitis y al año siguiente me apareció espina calcaneana en ambios pies.Ahora estoy mejor físicamente,pero viví lo peor de mi vida:la impotencia,lafrustración,el correr detrás de mi madre de 84 años quien me cuidó mucho pero me torturó toda la vida y el que se me va tan joven fue mi esposo.Realmente no soy la misma de antes de su enfermedad,hago terapia,pero me cambió el carácter,y cuando termino todo esto que fue en el 2008,me enfermé y hoy por hoy vivo sola.La verdad,me tragó la vida,me quitó la alegría y el ser hijo único cargando con toda la responasabilidad fue demasiado para mí,que debía estar biem ya que soy docente.Ojalá tuvieramos más apoyo y no dependiera tanto de lo económico porque para tener cuidadores se precisa dinero aligual que una residencia.la verdad que todo esto me marcó a fuego

Perdón hago una corrección mi madre enfermó en el2004,mi esposo en el 2007 y mi madre en el 2008

no se si decir — que hago tengo ami papa con esa enfermedad estoy algo estresada no me deja ni dormir . no puedo concentrarme en el trabajo………ayuda por favor

Realmente hace mucho bien leer estos comentarios,es una enfermedad que no mata, pero agota, destruye, y los cuidadores son absolutamente incomprendidos, solo quien atiende las 24 horas sabe que ocurre. Yo siempre le comento al médico tratante, ustedes estudian, estudian, leen y tratan al enfermo solo un cuarto de hora en los controles. No tienen la experiencia, el contacto y reacciones permanentes del paciente que es diferente todos los días, la experiencia de ayer NO vale para hoy ni para mañana. Por el momento solo quiero agradecer la oportunidad de conocer las diferentes circunstancias de diferentes lugares. Una amiga que acompañó al esposo con gran esmero me decía: Recomiendan paciencia? qué va, lo único que sirve y permite asumir y actuar con dedicación es el AMOR

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mi padre tiene Alzheimer, desde 2009 y ahora ya esta en la fase que es dependiente total, solo dice mama y cuando no tiene a su cuidadora cerca entra en un estado de ansiedad, le están medicando para la ansiedad y depresión.
le estamos llevando a un centro de día de Alzheimer; y nos llaman todos los días que vallamos a recogerlo que no le aguantan. Estamos desesperados ¿es normal que un centro de especializado en Alzheimer no lo rechace constantemente?

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estoy bastante angustiada con este tema mi mamá vive haciendo crisis y culpandome que la trato peor q ue a un delincuente…se le puso eso en la cabeza y a todo el mundo le dice que la trato mal, lo peor es que la familia lo cree porque yo siempre tuve carácter fuerte pero no la trato diferente a toda mi vida, ella esta agresiva y mala. A casa ya no quiere venir nadie. Yo estoy cada vez mas sola

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Gracias por el artículo, es cierto que el alzhéimer es duro para familiares y cuidadores, pero influye mucho también la actitud con que lo afrontemos. Si dejamos de lado las expectativas y la tristeza y aceptamos lo que hay, aprovechando las pequeñas cosas para disfrutarlas y agradecerlas, esto nos ayuda mucho más a sobrellevar la enfermedad y también a conectar en la medida en que podamos con la persona enferma, para que se sienta querida y feliz, dentro de las dificultades. Nadie dijo que sería fácil, sino que valdría la pena. En Moving Your Soul, por esta razón, promovemos otra manera de vivir el alzhéimer. Os animamos a visitar la web http://www.movingyoursoul.com y abrir una puerta a la esperanza y la alegría en medio del dolor.

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I did this exactly to the T. sent it out to a list of 700 people who signed up to find out more info, shared it on our business page that has almost 3,000 likes, had my team blast it on their own facebooks, twitters, their own email lists, posted it in different groups. we are barely reaching 500 signups on this and its been over a week and ours is for free womens activewear which is one of the most popular trends out there for women right now. so… 100,000 in one week from just this? hmm must be some other secret in there.LikeLike

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