Alzheimer’s opened the door

My mother was diagnosed with early onset Alzheimer’s at the age of 64, after a tough life devoted to her children… and after a life dominated by one of her inner demons that made our mother-daughter relationship a hell for many years.

It was during 12 years of illness, and with professional help, with dedication and with time, that I came to understand …

I came to understand that ageing and confronting the demise of your loved ones is a rule of life, not a punishment. The when and where this will happen… a chance slot on the roulette wheel of life. And the fact that Life is random does not even come into it. There are no guilty parties, there is no rationale, nor any laments worth their while.

I understood that it is fair and right for me to respond with body and soul to the sacrifice and efforts received from my mother, without shielding myself from the tone of our relationship; that the adult in full possession of her faculties was me and that this was “The moment” to support her by being by her side and thereby pay tribute to her courage. The time to demonstrate (and demonstrate to myself) that I was the good person she wanted me to be … and that I would be proud of so being.

… and I learnt.

I learnt that sometimes it is necessary to simply accept, to lower one’s arms and surrender, without this representing a defeat. I learnt this in the dramatic moment at which the cruel diagnosis was presented starkly, definitively and irreversibly before me. I learnt that the Heart is not affected by illness and that Love remains there, indestructible, desiring as always to show itself and to be reciprocated. That only through this Love can the bond with the beloved person be maintained – that it does not disappear, as many believe – but that it remains there, present, different, yes, “new”, I would say and accessible under a different set of rules.

I learnt about myself and about my values; about my most sincere gratitude and my capacity for commitment.

I learnt to Love unconditionally, without paying heed to the past or requiring the other person to be who I needed them to be.

I learnt the immensity encapsulated within the caress of a curl of my hair and in a fixed gaze … that is not absent but free.

Beside the sadness and anger I feel when I think about the Life and the joys that my mother would never again enjoy (and this is leaving so much by the wayside), Alzheimer’s and the neurons that it stole also took away her fears, her anxiety, her demons… Her mind was lost, and in its place all her tenderness, her affection, her emotions and her fragility blossomed…. as did mine. Alzheimer’s opened up a wonderful door of bonding and love between my mother and me.

I love you, mother. Thank you.

Mónica Queralt

Granny, poem by Nayeli to her grandmother with Alzheimer’s

We just received from Berlin this testament to the bond between grandmother and granddaughter. Nayeli, a 17 year-old granddaughter, is trying to find a way to be with her grandmother Blanca Nieves, and from that search comes a poem. It is not the first poem we have received from family members of people with Alzheimer’s. They have difficulty expressing themselves in conventional language and, as a result, this poetic form allows them to open up their hearts to a special experience: to a love and to a form of communication that breaks through barriers…

Granny,

It’s difficult to see you,

It’s uncomfortable to see how you suffer.

I want to look the other way but it wouldn’t be fair,

You don’t have that option.

You cannot get away from this.

Your fragility makes me feel fragile

And I’m sorry I cannot help you

It hurts my heart.

Our lives are so different.

A year without seeing you,

I explored the world.

You were here.

But today our tears unite us.

Your illness.

For you, impossible to remember.

For us, impossible to make new memories.

Here we are,

Looking at each other,

both of us asking

who is she?

You don’t recognise me

I don’t recognise you.

An hour by your side and it all becomes clear

It doesn’t matter if you don’t understand me.

The important thing is for me to share.

It doesn’t matter that I never knew

the woman you were 20 years ago,

because I carry her within me.

Your songs, I sing them

your son, he is by my side

Your love, I can feel it.

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”

Escenas de los talleres “Entrando en su mundo”

Durante nuestros talleres suceden escenas tan especiales y emotivas como esta:

¿Qué sucede cuando consigues entrar en su mundo? –pregunté con mucha curiosidad.

Me es difícil explicarlo con palabras -dijo Isabel entornando los ojos-. A veces él me aprieta ligeramente la mano como si me estuviera dando las gracias por estar allí. Otras veces noto el cariño en su mirada. Y hay días, como hoy, que al llegar a la residencia y saludarle con un beso, se gira para mirarme, me sonríe, y aunque ya no recuerde mi nombre, me rodea la cintura con su brazo exactamente como tantas veces hizo antes de la enfermedad.

¿Y cómo te sientes tú entonces? –preguntó espontáneamente otro de los familiares que participaba en la sesión.

En esos momentos –dijo Isabel con su cara iluminada– me siento tan feliz y unida a mi marido que durante un rato se me olvida que tiene alzhéimer.

Son muchos los testimonios y muchas las personas que durante nuestros numerosos talleres nos han compartido los pequeños –o enormes– secretos y trucos que utilizan cada día para conectar y entrar en el mundo de sus seres queridos con demencia. A veces es la música, o las canciones de antaño esa puerta que les permite el acceso. Otras veces, entrar es tan simple como sentarse junto a ellos muy serenos y en silencio. A algunas personas les funciona el pasar un rato viendo fotos con su ser querido, rememorando hitos de su infancia o incluso viajando momentaneamente a su pueblo de origen. Y luego está, como no, el truco universalmente utilizado, el que casi nunca falla: el de las caricias y el cariño,. Hay muchos más. Infinitas maneras de conectar y encontrarnos con nuestro ser querido con alzhéimer allí donde está. Y cuando lo conseguimos, una profunda alegría y una intensea sensación de paz emergen de nosotros y por unos momentos, sentimos que todo está bien.

Pero también son muchas las personas a quienes la barrera de la demencia se les hace infranqueable y se van frustrando según avanza la enfermedad. Casi al mismo ritmo al que van apareciendo los síntomas, se va agrandando la sensación de incomunicación y desencuentro con esa madre, ese padre, esa esposa o marido al que no se resignan a perder, pero que ya no saben dónde encontrar.

Según va sedimentando la culpa, la no aceptación de los cambios provocados por la enfermedad, los conflictos del pasado o el permanecer cerrado a explorar vías nuevas de comunicación, más difícil se va haciendo ese encuentro. Esa conexión tan mágica de la que Isabel y tantos otros familiares nos hablan y que yo tantísimas veces experimenté con mi padre Facundo. Un encuentro que tiene el poder de derribar momentaneamente cualquier barrera y acercarnos al mundo, al universo, de nuestro ser querido con alzhéimer para disfrutar de él, disfrutar ambos.

Son muchas las personas a quienes, en este momento de sus vidas, se les hace cada vez más difícil entrar en el mundo de sus seres queridos con demencia.. A ellos van dedicadas estas líneas. Sé que no es fácil, por supuesto que no. Pero tampoco es imposible. Espero que testimonios como el de Isabel y el de tantas otras personas os insuflen no solo un rayito de esperanza, sino que también os abran el apetito y las ganas de explorar, de experimentar nuevas vías de comunicación con vuestro ser querido. A mí al igual que a otras muchas personas me llevó un tiempo descubrirlas, pero os aseguro que el viaje merecerá con creces la pena.

Con cariño

Susana García

Co-fundadora Moving your Soul

Daughters and mothers

When we travel, something changes inside of us, if we embrace the experience. Something similar happens with Alzheimer’s: It is a one-way journey, with no way back, whether we want one or not, and it shakes us to our core. To begin with we refuse to accept everything it involves, above all the goodbyes that come with it. And we are also scared of what is to come.

This ebook is a collection of the real life stories of daughters and how they experienced the dementia of their mothers. Each one of these testimonials in reality represents a stage that many people go through on this journey of learning to live with dementia. From pain to happiness, passing through doubt, nostalgia and fear.

Some of the protagonists of these testimonials have now reached the end of their journey, and others continue along it. If you are in the middle of yours, these stories may throw some light upon your own path.

Olga Romanillos & Beatriz Ariza

Mi alma despistada, a song inspired in Alzheimer’s

Es maravilloso recibir mensajes espontaneos de desconocidos tan familiares como Chechu. Ha realizado una canción preciosa en la que además menciona el testimonio de Javier de MyS. Nos recuerda una vez más las conexiones invisibles que se van creando, conexiones de almas que se mueven y que conmueven a otros. Seguro que esta preciosa canción, la voz de Chechu y el vídeo tan bonito que han hecho todo el equipo, inspirarán a más personas, crearán más puentes y más luz alrededor del Alzheimer.

“Mi abuelo se marchó con su Alzheimer, ese mal compañero de viaje que te roba la maletas.
Esta canción nace con el paso del tiempo, con todas esas cosas que me gustaría haber dicho.
Dedicada a mi madre, abuela y tías, dedicada a todas las familias que encuentran en esta enfermedad la razón mas potente para amar por encima de todo.” Chechu Sin Más

Entre el sosiego y la sombra, Francisco X. Fernández Naval

Te corto las uñas,

Nudosas manos ahora de niebla.

Paisajes amarillos en el embrión de tus ojos

casi ciegos. ¿En qué piensas? Pregunto.

No hay en qué pensar, respondes.

¿Y los recuerdos?

¿La fascinación de la luna que buscabas desde la ventana?

¿Los cuentos del abuelo, al que llamábais papá?

¿Las meriendas en el campo, al pie del río?

¿Las verbenas de agosto?

Ya no quedan recuerdos,

Y esbozas una sonrisa dolorida y resignada

Que diluye el horizonte

Entre el sosiego y la sombra.

En el huerto canta el mirlo

Y son un clamor las rosas.

Francisco X. Fernández Naval

Reunion

A few days ago I received an email from a very dear friend and her words moved me so much, that I didn’t want them to be left in my email intray. That is why I asked her permission to publish an extract of the email and a photograph of her with her aunt, and she generously agreed.

Thank you for sharing your experience, dear Pilar.

Olga

“I need to give you, and everyone involved in one way or another with making Moving Your Soul a reality, my most heartfelt thanks. Now it is I who is experiencing this as my aunt Marta, with whom I have been very close, is now in a residential home since her Alzheimer’s advanced to a more severe phase.

I hadn’t seen her for more than 15 years, for we lived far apart and I only had the opportunity to speak with her by telephone.

Since the last time we spoke her condition has worsened significantly and although she has a very caring family from whom she receives much love, unfortunately she is now in a phase in which she needs residential care. So I went to see her one sunny spring afternoon and I found her in bed, gripping on to the bed frame as if scared of falling off.

I have to thank you and Moving your Soul for the gift of a perspective that helped me to contain the pain and anger of seeing my beloved aunt that way. From the first moment, I was able to look into her eyes, embrace her and be with her, with the same aunt Marta of always. I didn’t ask her if she knew who I was, I simply said, “My beautiful Auntie, I’m Pili, Maria Cristina’s daughter, I have missed you so much and I came to see you.” Her eyes lit up for an instant and she repeated “auntie” with a crooked and cadaverous smile that nonetheless was her usual smile too.

I gave her lots of kisses and, given how coquettish she had always been, I filled her with compliments while tears rolled down my cheeks.

I spoke with her, gave her sips of water, put cream on her face, stroked her hair and I would love to be able to do this every day, every day… because I imagine her there, so many moments all alone, and my heart breaks…

She also kissed me a lot. She looked haggard, bone-thin, like a small bird (I then understood what you had told me so many times about your mother) – so defenceless and vulnerable. I said to her “you’re like a little bird, are you hoping to fly away?” And she laughed, repeating little bird a few times, and managed to say “how funny” just before grimacing in pain as if for an instant she became aware of her own suffering. My caresses were received with a baby’s way of trusting. “I know, auntie, I know…” I said softly as I held her while she cried without tears for a few moments, and then she calmed down.

I held the hand that was clinging on to the bedrail with such determination that her knuckles had turned white, as if all blood was drained out. I said to her “you can let go auntie, I’ve got you, that’s it, I’ve got you…” she gradually let go her hand while I stroked her dry skin, like paper… I put cream on her hands, and caressed her until she fell asleep.

I have much to thank my aunt for and I did so then and there, looking into her eyes and with the profound sadness of knowing I was also saying goodbye to another aunt who at the same time was there in front of me.

I don’t know if I would have been able to get through this experience with so much tenderness if Moving Your Soul had not already moved my own soul prior to this encounter. In fact, I am convinced that the pain, anger and impact of seeing my aunt like that would have undone me.

THANK YOU, my friend.

THANK YOU, Moving your Soul.”

Pilar Rueda

A sea of gifts

June of 2016. A neurologist confirmed the suspicion that had lingered for a couple of years: my father has Alzheimer’s. The news arrived with no great fanfare from the hands of a professional who, at last, put a name to what my mother, my brother and I had instinctively known.

“Dad is not right, he’s not the same, he doesn’t look, or communicate the same…”.

After a few years of failing to get any answers, we finally received confirmation that was as painful as it was a source of relief.

Pain, upon hearing the name of a neuro-degenerative disease that to-date has no cure. Relief, to know that at long last I could prepare myself, above all emotionally, to accompany my family on this new stage of our shared lives. And I say “my family” and not just my father because the challenge was one for all three of us to face, each of us with our own unique and individual way of making full sense of what life had in store for us.

To-date, there has been so much uncertainty, above all in the face of a treatment that changes my father’s attitude, energy and mood on a daily basis. However, although moments persist of adult sadness at not recognising my father, together with a child’s sense of abandonment in being unable to find the person who used to comfort me, I am living through one of the most beautiful, profound and serene periods of knowing a wonderful human being who has given me, and continues to give me, so very much.

I am sharing moments with him that directly reach my heart…

From the very first moments when, on holiday on the seafront, he shared his fear and his sadness and begged me in tears to never leave him. Through to more recent days, in which he admitted to me that he was “not very chatty”, almost by way of apology, while we continued strolling through the countryside and, all of a sudden, he began to speak about very personal moments and things he had never before shared with his daughter.

Today many filters have disappeared in the conversations with my father. We find ourselves amidst the words that remain and we communicate with frequent hugs which I unashamedly demand. And we connect with the songs we belt out at the top of our voices in the car or in the kitchen while we share some dance steps. There are still the classics like Nat King Cole that exude as much elegance as when my father would slowly get ready, with so much attention to detail, to go for a walk. And, like I always do, I remind him how good he smells, he never steps a foot outside the door without spraying himself with cologne.

alzheimers

A spark has gone from my father’s eyes, but a spark does remain in the connection I have discovered with him, though our hugs, laughter and all the affection he envelops me in. His insecurity becomes my energy to guide him, accompany him and take care of him. And I admire him tremendously for how he fights so hard in his own way, so determined to lay the table, despite the tablecloth ending up crumpled and the cutlery where it shouldn’t be, in going out in the neighbourhood to do errands with the note my mother gives him, or in finishing a “word soup”, even if we have to tell him where the missing word is.

Admiration of my father for his courage, his inner beauty, his light and the deep love he feels for his family, strengths he shares with my mother, a woman as extraordinary as the man she married almost 43 years ago now.

Life is blessing me with the immense gift of reminding me that everything beautiful, everything that matters, is to be found in the moments shared with my loved ones, that communication is more genuine when words are superfluous and that my path now has a deeper and more serene meaning.

Thank you, Dad,

Mónica.

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And one day I started to take pictures of her

Why do we continually take photographs, in all types of social situations, but when we are with someone who has Alzheimer’s we forget to get the camera or phone out to immortalize that moment?

Could it be that we are determined not to remember our loved one in that phase of their life, but rather how they were before the illness?

And could this not be a subtle way of ignoring the reality of that loved one, of denying reality, and thereby also denying the person?

So many times, when seeing my mother absent, with her head drooping or mouth hanging open, have I felt a stab of pain in my chest. And, automatically, my mind brings forward an image of her when she was younger, and was able to recognise me and speak to me, an image of when “she was herself.” So many photos of times enjoyed in the past take me back to that image that my heart so yearns for, photos I took or that others took of us together.

And one day I understood, that if I went “there” I wasn’t “here”, and if I wasn’t here I couldn’t be with her, in the present moment which is the only reality in which we can connect and feel close to one another. This is why I decided to take photos of her, lots of photos, alone or with her grand-daughters, or with my brother and myself. By so doing I am creating the images that will also allow me to remember my mother this way, how she is today.

And the thing is that she is the same person today as she has always been. Her gestures, her apparent absence, her changed personality, are just the surface through which I must look to once again find myself with her.

This is why I take photos of her, and each photo penetrates that surface, each click says:

“I see you, mum, and I accept you just as you are” .

I am sure that when I focus the camera, and I say “mum, a photo”, she feels the great big “yes” that my eyes and my whole being are conveying to her.

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Olga Romanillos