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.

-

Olga Romanillos

Reminiscence in Alzheimer’s and other kinds of dementia

reminiscence in dementia or Alzheimers

In Moving Your Soul we have started a podcast in Spanish, and our third episode is an interview about Reminiscence in dementia. Our special guest is Raül Vilar. Here you can find some links to know more about it:

European Reminiscence Network: http://www.europeanreminiscencenetwork.org/

Pam Schweitzer: http://www.pamschweitzer.com/international.html

Communicating from what remains

These days we are most specially thinking about our dear friend Bego, one of the souls who gave shape to Moving Your Soul – Another way of living with Alzheimer’s. We want to dedicate a special memory to her, as it is a year ago now that she left us. We herewith copy a text that she published in the blog she wrote for the Economist, in a post that specifically spoke about Moving Your Soul and in which she explained a very endearing anecdote. She left us, but she also continues to speak to us from what remains, from what she left behind… and we will be forever grateful…

“These weeks of absence from writing my blog, have been dedicated to ‘Moving Your Soul. Another way of living with Alzheimer’s', a web project, www.movingyoursoul.com, we have just launched between four female coaches committed to making the world a little bit more of a comfortable place to inhabit. On this website, a lot of testimonials share their experiences of communicating with their family members who are affected by Alzheimer’s or other dementias. What is innovative is that this website emphasizes maintaining communication and a relationship with what remains, not what has been lost through dementia.

I have thought so much about this proposition and, as I need to experience in order to gain insight, I headed to various care homes and centres to find out about the reality of Alzheimer’s and how some people manage to overcome the barrier of what is so terrible and embark on a relationshop with their family member. Some days I would return home happy with the progress of my own research, and others I would return broken by having witnessed scenes of such pain. And one day I met a man, Antonio S. who every afternoon went to visit a woman. They used to be lovers when they were young. Then, he emigrated to South America and continued his life, until he retired, childless, unmarried, and decided to return to Spain.

How thoughtful you are. Both times I have seen you, you have brought flowers!, I said to him one of the days we shared the lift. Are you visiting your wife?

No, and I’m not visiting, he replied serenely and with a very clear gaze. I come to be.

For an instant I thought of the film ‘Son of the Bride’ and felt a tear brimming, and I suddenly asked him “What do you mean by that?”

It’s the difference between coming to see her or to be with her, in the place where she is now, he replied simply.

Please forgive me, but I feel there are contradictions on this point because I don’t know if the woman even knows where she is, I openly declared my doubts.

I have nothing to forgive you, - he said expansively - Only if you listen, touch, feel, be, can you communicate with people who suffer from this illness. They haven’t gone, nor do they wander around like penitent souls in Limbo. They are still here or do you think they are invisible, he raised his voice in protest and waved his hand. It’s like a painting, sometimes the painter doesn’t need to fill in all the outlines to paint a portrait. And yet, the spectator never feels that any lines are missing to complete the work.

I felt a little breathless for a few minutes as I listened to this man of scant height yet immense wisdom and then with a small voice, I said: Is that how you see your loved one?

Yes, it is. The flowers make her enter into the beautiful love story we experienced together and which we have somehow resumed. For me, she is still the brunette who used to sing from the window of her house, back there in Lavapiés. And I don’t need any more lines to know that the beautiful women I once had to leave, is still here.

There are few romantics like you left. Please allow me to call you Antonio, I said.

I only expose it, everyone else silences it because it’s frightening to experience reality as it is. Crude, tough, tremendous, but also very powerful, very beautiful. You have to want to see it. This is what the geniuses do. Transcending moving from where they are, like Picasso. Excuse my simile, but this is my passion, my profession. I was an art history teacher for 20 years.

Do you think we could all experience what you speak of?, I remained curious and hooked on his wisdom.

Yes, I am sure of it. Of course, it requires honesty with oneself and parking our ego. The one that is full of masks and stereotypes. But look, we will all be old one day, decrepit, ugly, wrinkled, forgetful, sick and we will still continue being people. Although in order to remain so we need to be seen, listened to, dignified.

María is the luckiest woman in the world, having a friend who actually sees her, the way you see her.

My regret is not having taken her away from her parents home and taken her with me to Venezuela. So my advice is to always enjoy what remains and what is there right now, as it will always be much more than what has gone. He left the lift and headed for the lounge, where the people with Alzheimer’s were.

Standing in front of Maria, dressed in blue and sat on a chair with her head to one side, he gave her a white lily and said to her:

You are the love of my life, brunette..

Referencia: http://www.eleconomista.es/blogs/coaching-todos/?p=722

Nonverbal Communication and Coaching in dementia

In Moving Your Soul we have started a podcast in Spanish, and our second episode is an interview about Nonverbal communication and coaching in dementia. Our special guest is Susana Garcia Pinto, professional coach and trainer, and a member of Moving Your Soul.

“From my experience as a daughter in the intense journey of Alzheimer’s, and as a passionate professional in the fields of human relationships and communication , being part of Moving your Soul makes possible each day the realization of a dream: to be able to show the world that IT IS POSSIBLE, that there is room for plenty of light in the a priori dark path of dementia.”

Susana Garcia Pinto