Tu Respirar

La queja interminable.

Un Ay! cansino que repites, como si fuese aire,

Noria que alienta y pula del existir,

Mecanismo invisible que sustenta el resplandor de la vida.

¿Duelen los días? ¿Duele el misterio que se acerca, inexorable?

¿Duele el vacío concéntrico de los recuerdos perdidos?

Cubro tus mejillas de besos, de caricias las manos.

Te llamo linda y sonríes,

escéptica. Quiero prender a mí tu aroma para siempre

El aroma de madre. Aprender tu respirar, así,

Cuando duermes sobre el brazo, así,

En el que acuestas la frente, así,

reposando en la mesa, así

Redonda al sol de la galería. Así, ese calor

Que resiste el embate del temporal oscuro,

Implacable y constante y, al tiempo, tan humano.

De ese tu respirar nacen abejas,

Doradas abejas que recorren el cuarto, el corredor,

Buscando la rama de tus pasos.

Y luciérnagas que iluminan sueños,

Tijeras, alfileres, orejas de lobo,

Una lechuza de sombra.

De este respirar brotan albaricoques, que brillan sobre la tarde

Y barren el espanto

Cuando los hombres golpeaban la puerta del patio

Con ansias de matar, y gritaban, unos vestidos de azul

Otros de verde. Todo aquel ultraje olvidado ahora

En el remolino de acero que traspasa los límites.

Este respirar tuyo, mi tesoro,

Todavía va y regresa, circular,

Como la garza en el río, como el herrerillo de cada primavera.

Este tu respirar.

Francisco X. Fernández Naval

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

Poem in Spanish ‘El Estanque’

Today we share with you a beautiful poem in Spanish that the poet Francisco Fernández Naval has sent us from Galicia…

Inmóvil sobre el agua del estanque

Tu memoria

Parece un nenúfar que se cierra

Con la sombra

No digo con la noche

Digo sombra

Que precisa de luz

Para ser sombra.

Con ella los rostros difusos y sus perfiles de antaño.

Con el sol la penumbra afilada de las palabras

Que se resisten a ser,

Que invocan ecos,

Y que tanto significan para ti.

Inmóvil sobre el agua del estanque

La tarde mientras duermes,

Sentada en la silla de ruedas,

También tú, eco, perfil, aliento,

Que huye cara el apacible valle

Sin tiempo.

Francisco Fernández Naval

(Foto: Maribel Longueira)

Emotional support with Alzheimer’s, more important than we tend to think

Reviewing my patients diagnosed with Alzheimer’s, one in particular comes to mind, fundamentally due to the involvement of the family in the father’s illness. The wife and children have been such a tight-knit group since diagnosis of the disease.

Diagnosis means a vital change for the whole family and the support of these family members is fundamental to the patient. Thanks to this attitude, I am surprised at each check-up to see that clinical progression of the disease is much slower than that of other patients under my care who do not share this approach to the disease and in which both the patient and his/her family and social circle adopt a more passive attitude.

The patient with Alzheimer’s passes through different stages. In the early stages they are aware of their disease and more often than not suffer their emotions in silence. The support of the family, as both participant and support, is essential to enable them to feel they can approach their disease in a proactive way. Specifically, this family surprised me for this very reason, for their proactivity, always seeking and asking for alternative ways of treating the disease, in addition to specific and ordinary treatments.

This positive approach is conveyed to the patient him/herself and impacts their emotional and functional state. There are a number of studies that cover this issue of how the family and social environment influences the experience and progression of chronic illnesses, and in this case Alzheimer’s.

There is no Alzheimer’s disease, but rather patients with Alzheimer’s; there are no two patients the same, just as there is no identical emotional circle for each patient.

Much has been spoken and written about the effect of the Alzheimer’s patient on his/her carer (caregiver overload), which must be taken into account to ensure prevention and intervention, not solely for the health of the caregiver themselves, but also for that of the patient.

The patient with Alzheimer’s is no stranger to these aspects and also “suffers” during the initial stages of their illness due to being aware of the pressure and the demands being placed on their partner and family members. Feelings of guilt and stress arise, which do nothing but increase negative emotional symptoms and also organically impact progression of the disease (effect of continued stress on the hippocampus).

To this effect, numerous studies warn that continued stress accelerates symptoms of the disease.

Family and social environment is yet another variable of the disease, as indeed are diet, physical exercise and sleep.

Sometimes we focus on keeping abreast of the latest scientific advances, of new molecules for the disease, and we forget what we have closer to hand, on what we can actually do and is within our gift, and which has shown to have an importance at least equal to these specialist treatments.

Dr Juan A Cruz Velarde

Neurologist

www.neuronae.net 

How you Are to Me, a film that will open your eyes

Each and every one of us has our own story, our own skin. How difficult then to immerse ourselves in someone else’s story from the standpoint of our own subjectivity! That is why film is so very powerful, with the ability to move us, to touch us and to bring us round to new ways of seeing things. ‘How you are to me‘ is a 22 minute film that transports you into another’s skin, to that of an elderly couple who live with the Alzheimer’s that afflicts the husband.

At Moving your Soul, we have had the honour of seeing a preview of this film, which is a beautiful portrait of a couple living with Alzheimer’s in their daily lives. The story could just have been told as is, but Aemilia Scott , the director of the film wanted to break the mould with an interesting detail: the actors are not 60 or 70 years of age, but in their 30′s. As spectators we see the couple as they see themselves, and as they have always seen themselves. They fall in love and since then, despite the passage of time, they continue to see themselves that way. The film is able to convey to us the tenderness with which they look at each other, with their unconditional love. 

How You Are to Me official trailer from Electronic Bass Entertainment on Vimeo.

All of us who have experienced situations like the ones that feature in ‘How you are to me’, can recognise the challenges they present and learn from the film ways to successfully handle them. And it’s not only about specific techniques, such as using a photo album to create an emotional connection, but also the fundamental attitudes of carers: empathy, tenderness, flexibility… We loved seeing the woman improvising, adapting to each situation as it arises and even finding ways to enjoy the moment.

Although this is a film aimed at people living with a loved one who has Alzheimer’s, as well as other carers, we believe it is interesting for everyone. It’s amazing how experiences change depending on how we see and interpret what’s happening! A normal day can become an extraordinary one, and even the toughest moments in life can become opportunities for learning, for growth and for increased awareness.

‘How you are to me’ fills you with hope, it connects you to the what is most essential in personal relationships. It is undoubtedly worth seeing and thereby opening yourself up to a new way of seeing people with dementia, and the elderly in general. 

Olga Romanillos and Beatriz Ariza

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

I will always be your Chiquitita

She is a real role model, she has had Alzheimer’s for 13 years and is still happy. She smiles, sings and, up until a short while ago, she was also dancing! :) She loves whoever is by her side at any given moment. She doesn’t know who I am but just by being close to her I can feel that she cares for me because she is all love.

Granny, yet again, you have shown me that it’s not so important who I think I may be but who I truly am. It’s not so important where I come from, but where I am, what I do, what I feel and what I convey right now, in this moment.

You, so genuine, so funny, so unique and so special, you know how to value each and every second of your life, you are love itself.

Even though we cannot choose the circumstances we must face, we can certainly decide how we face them!

No matter how old I become, I will always be your Chiquitita… “Chiquitita you know very well that sorrows will come and go and disappear, you will dance again and be as happy as the flowers in bloom. “

María Gilabert Hernando, founder of BeValue

My princess

‘From the forgetfulness of the ever-narrowing castle of your life, illuminated by thousands of light bulbs that are gradually burning out, you are not aware that the lights are dimming and you are getting used to creeping darkness, without recalling that the walls of your castle were once blazing with light.

My princess, you forgot the keys to your home, your fiefdom, and the names of your people, you forgot your world, you forgot about love and about your very self too.

You are like an ever smaller child who needs more and more attention, more care and more love, which is why you are not my queen but my princess. You struggle amongst the fog of your mind in the chaos of your memory, it is a never-ending sentence for a crime you did not commit.

Alzheimer’s is a contradictory ailment, difficult to encapsulate. It is absence, grief, solitude and emptiness, but also the impotence and rage that I feel in having you at my side but not being able to thank you for the peace and serenity I feel everyday when I visit you and sit by your side.

I just want to tell you today and as part of this tribute, that although because of your illness you won’t know it, you won’t remember it, I love you my princess.’

Javier Falque

Validation groups for dementia patients, carers and families

Validation is a method of communicating with and helping disoriented very old people. It is a practical way of working that helps reduce stress, enhance dignity and increase happiness. Validation is built on an empathetic attitude and a holistic view of individuals.

Javier is social worker with a lot of experience in different areas, formed in Reminiscence, expert in individual Validation and group Validation. Currently, he is training as Trainer of Validation in Reims (France).

More info about it:

https://vfvalidation.org/

http://vfvalidation.fr/journees-detude/journee-detude-naomi-feil-et-vicki-de-klerk-rubin-17032017-paris/

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.

-

Follow us on Facebook!