Sad and grateful

Today we are infinitely sad and infinitely grateful in MyS. Sad because Begoña has gone and feel the emptiness of her departure. And infinitely grateful for her love, her friendship, her soul always active and committed to our vision.

Our hearts are with her loved ones; her husband Gavin, her daughter Lorna, her parents, family and friends. To them we can only embrace and offer our support.

Thank you, Begoña, for sharing so much with us. Rest in peace.

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We want to share her message and her words with all of you… the wisdom that she shared with us…

“Picasso has an engraving with three blue spots that colour the skirt, the bust and the face of his first wife, Olga Koklova. The rest of the body are pencil strokes. When I look at it, an overwhelming emotion arises of profound fragility and resonance. All this, by just looking at the stains of blue in her skirt, her bust and her face which is what is highlighted.

Accessing dementia from that which remains; accessing the human being who is, this is my leitmotiv. And ‘Moving your Soul’, allows me to create a more beautiful and more honest world, just as the metaphor of Picasso’s picture.”

Thank you

thank you

Since my consciousness started to become autonomous, I began to seek the meaning of my life in literature, music, travelling, in my contact with Nature, getting to know things, people and diverse places, the more different the better, and in the love of the people I have around me.

I was looking for an answer taking for granted that happiness is something you always find along your path first, until some years later I convinced myself I wouldn’t find it there, because what gives meaning to our lives is the path itself, and that meaning is something we find as we walk. In other words, I still didn’t know where to look at, and until long time later I was still looking where I couldn’t find it: outside. And never where it lies, in our animal essence, in our human condition. Inside.

I have come across with famous thinkers afterwards, people who have given words to this feeling:

“The traveler has to knock at every alien door to come to his own, and one has to wander through all the outer worlds to reach the innermost shrine at the end.”

- Rabindranath Tagore.

”So many people come to me when I talk about purpose and finding meaning in their life, what is it, why it seems to be eluding me [...]. I’ve always felt that the real purpose of life is just to be happy, to enjoy life.”

- Wayne Dyer.

Deep inside me I have always known it: always I have looked for it along my path, the meaning to why I am and why I am here I have always mixed with the pursuit of happiness. However, for those words to have the meaning they have for me today, I have had to make a leap. The impulse comes from the first times I listened to the wisdom that explained the meaning of things. Day in, day out through such expressions as ”We have to feel happy” and the answer to the question, always affirmative: ”Are you happy?”. Getting to know Facundo and seeing the easiness with which that wisdom was part of his everyday life helped me be a little more aware, to change my perspective, and an important tool to face my future.

This text does not intend to explain how it is to connect to somebody with dementia. I just want to share how it was for me to make a connection with him. To do that I had to see through his eyes, the ones of somebody who lives his present moment so intensely. It often meant to return from the antipodes where my chain of thought had taken me. I rememmber moments when I found some resistance, bigger or smaller according to my fears, which were not always conscious and not inmediatedly explainable.

I agree with those who believe that somebody with dementia keeps the essence of who s/he is. I also believe that being in touch with someone who lives his/her present so intensely is a privilege for anyone who finds the space/time to be there and can in exchange collect that gift of peace, wellbeing and happiness, for having connected here and now, something that comes natural if you let it happen.

This text is part of my gratitude for one of the most important, transcendent lessons I have ever received. To someone whom I never met without advanced symptoms of dementia.

Juan Cruz, Madrid, Spain

Talking about Alzheimer’s at the Radio

Moving Your Soul has a message, a message for the souls, a message from our souls…

This audio – in Spanish – is a radio program (Mundo Saludable, a spanish program by Beatriz Pieper) where Begoña Guitérrez and Susana García, both part of our team, explain their experience and vision about alzheimer’s and Moving Your Soul. Very inspiring and moving! We hope you like it!

More info here

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We are not depressed, just distracted

There is a very inspiring speech of Facundo Cabral that reflects the importance of positive and grateful attitude in life. It’s a good message for facing difficulties, like when we have a family member who is losing memory, or we feel we are getting older and our mind is not so clear, or we are sad because the person we love is no longer as he/she was before …

These are some parts of his brilliant speech:

“You’re not depressed, just distracted. Distracted from the life that inhabits you. You have heart, brain, soul and spirit … then, how can you feel poor and unhappy?

Do not fall into what your father fell, that he feels old because he is seventy, forgetting that Moses led the Exodus to the eighties and Rubinstein played Chopin as anyone at ninety, to mention only two known cases. “

“Sometimes we don’t feel happy, and it is so easy! Just listen to your heart before intervening your head that is conditioned by memory, complicating everything with old things, with orders from the past, prejudices, that chain: the dividing head, that is impoverished, the head does not accept life as it is, but as it should be. Do only what you love and be happy. ”

“We have plenty of things in life to enjoy: the winter snow and spring flowers, the Perugia chocolate, the French baguette, Mexican tacos, Chilean wine seas and rivers, the Brazilian soccer and Chez Davidoff cigars. We can enjoy the Thousand and One Nights, The Divine Comedy, Don Quixote, Pedro Paramo, boleros Manzanero and Whitman’s poetry, Mahler, Brahms, Ravel, Debuzzi, Mozart, Schopain, Beethoven, Caravallo, Rembrandt, Velázquez, Cézanne, Picasso and Tamayo among many wonders. ”

You’re not depressed, just distracted …

Fear distracts us from the love that is wise and courageous because when we love, we know that there is neither action nor end, looking in and the clouds disappear from the periphery; be still and silent to listen to your inner wisdom…”

Here you can listen a great part of his speech: You’re not depressed, just distracted

Credit of the picture: Flickr Faungg’s Photo

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Moonlight Sonata

I remember his hands at the piano, where he could be for hours… He had a serious face, as he was in the middle of something more important than him… His expression showed me the great love that he had for Music. He loved it almost as much as the love he felt about her dear wife and family… He met her when they were young, and I always loved when he told me stories about those times when they were in love… That was my grandpa, a fascinating person that I’ll always have in my heart, and the person that I can feel when I visit him at the care home.

Even though we don’t have that complicity any more, now I feel that I can learn more from him. I think that now he is wiser than when he was a lawyer. What I most enjoy and admire is the way he enjoys little things. For example, when we are in the garden, he looks at a tree and he says “how beautiful this tree is ”, and he can say it a lot of times without getting tired, nor him neither me. He’s got that capacity of surprise which I admire, as a philosopher, and the innate curiosity that sometimes I forget to practice.

Now he can’t play the Moonlight in the piano anymore. However, if I play that song in my Ipod, he feels happy and enjoys it very much. I like his great sense of humor when he says: “this song sounds great, I don’t know whether it’s mine or Bethoven’s”. And he smiles. He always preferred imagination to memory…

Nowadays his favourite songs are not the best classical themes any more… Today he’d rather sing a popular song than anything. We sing together in the care home, and in a momment, a lot of persons there join us. I don’t know whether I want to smile or to cry, but anyway what I feel is happiness, some kind of joy that is difficult to find in other moments of my daily life.

Dear Grandpa, you’re an oasis in my life… I feel lucky to enjoy your existence. But there are moments when I stay alone, crying, listening to the Moonlight Sonata of Bethoven… And I miss you, I miss it… But I also hold it in my heart, everything that you’ve given to us all your life.

Beatriz Ariza

I feel like a rich woman

I feel like a rich woman… Rich in knowledge… 

I began a new stage on my journey of training, growth and learning; an adventure of the kind I like; learning, listening, testing and finding out about a way of being with elderly people who are feeling disoriented.

This stage is that of Validation, a communication methodology that has made me pause my short but intense career.

It has been a hiatus full of activity, of reflection, sharing with professionals who are themselves on their own journeys, a group journey.

I have been able to see how difficult it is, at 36 years of age, to know what it means to be an elderly person, and even more so what it means to be disoriented; although the daily to-ing and fro-ing made me feel a little lost at times.

At a certain point in my life I decided to focus all my efforts, my expertise and my studies to being a good professional, accompanying and providing support to the elderly; and it makes me feel proud to think that there is still so much to learn.

This leads me to re-state that working with people is fantastic, fulfilling and with so many challenges. This is why the Validation stage has taught me so much that has enabled me to become closer to and behave better around disoriented elderly people.

I have made a commitment, first with myself and then with the people I have had the honour, the pleasure and the good fortune of sharing moments full of pure communication.

This makes me feel very rich and fulfilled, as I have been able to make sense of everything I have done: my studies, my experience, the way I am.. and at the same time, the people with whom I have learnt the validation methodology have offered me their experience, their life, their privacy, thoughts and teachings …

I can only repeat the fact that I feel truly wealthy, truly rich in terms of what I have experienced, which has been intense, which has made so much sense and has been so very important in my terms of my training.

So, I urge you to never stop learning, reflecting and sharing everything you are, everything you know, and everything you want to know; and that you may do so with people who can enrich you, as have Guillermina, Amparo, Dionisia, Raül, Olga, Kathia, Freddy, Estrella, Javi, Dolors, Carol, Xavi,Jordi and Naomi.

Duna Ulsamer.

I do remember

I do remember, at the beginning, a very unpleasant phase of confusion and disorientation. I remember a lot of pain, we all suffered through that phase and my father more than anyone. Because during that phase he was aware of everything and no-one understood anything. Then came the silence. The silence in our hearts, denial and, gradually, acceptance.

I remember how it changed our lives so suddenly, how I stopped going out partying till all hours so that I could be at home. I remember the moments of silence, the non-conversations, the not speaking but feeling: magical moments of company, smiles and jokes and some regret at times. And above all, how natural it all was; I remember everything was very natural, very spontaneous.

They say that the sick forget, but no. That lost gaze always smiled upon seeing me come in the door with that “pareeee ja estic aqui !” (Dad, I’m here!) but I also remember perfectly that he never forgot my name; he called me Micalet and I remain Micalet. Because my father was never more affectionate than with the illness. I remember everything good.

I remember the rituals, rituals with the pills, rituals with breakfast, other more unpleasant rituals, but everything with so much affection and patience. Because they deserve patience. Eight years of patience. A lot of patience and positivism. There is no tomorrow with this illness, there is only today and now, “que fem avui, pare?? On vols anar?” (What shall we do today dad? Where do you want to go?) and off we would go, getting into trouble; because we used to get into a lot of trouble, but good trouble. An ice cream? We would have ice cream; we’re going to see the Fallas? there we would be…

What I remember most are the trips, I remember Berlin, the walk around the Tiergarten, disorientation, chaos and calm. There would always be chaos, and then calm would always return, and at the end of the day, that calm turned into satisfaction. Always. From the quality of life we were trying to give to my father. Right up until the last moment of his life. But there was fun too, I remember the excitement with which my father would get ready for our trips. I remember the amazing helpers who would push him in a wheelchair through the airport to the departure gate. The smiles of the air hostesses. They deserve the best, always smile at them when you see them at airports. And I remember Rome and the breakfast croissants at Pascuetta, the watch he bought himself in Geneva because he wanted a Swiss watch to show off. I remember when we got lost driving in Geneva and we suddenly burst out laughing in our desperation. I remember that day when I parked the car at the Iglesia de Sitges square, I don’t know how I got there; it is family love that moves mountains, takes you wherever you want to go. The case is that I took my father to enjoy the sea breeze that day as if he were a god, because my father was a god and he deserved the best. I remember the dignity. For me, my father was the most handsome and elegant grandfather at the day centre. So much dignity despite the illness. And heads held high in the street, even if we were looked down upon, and we would hold them so much higher if this was the case. And then there were the paellas, those wonderful paellas we used to eat in the best restaurants. And I have always thought that my father was happy at those times. And I have always thought that he conveyed and shared this happiness with us. I think illness enables you to share special moments, and that the sick pass on their wisdom. And I think that the illness really brought us together so much, it united us, and ultimately cemented an everlasting paternal love.

I remember it all, dad, I love you wherever you are and I think of you so much.

El Micalet

The scar

I was only 16 years old when I noticed my mother starting to act different. She lost her way in the streets more often than usual and her foreign language skills that I always admired faded away. She was 45 and my father had died just a year before, very unexpectedly. His death was an incredible shock for all of us, but the way my mother processed this pain and loss would mark her gradual disappearance from this world and from being my mother. When she died of the devastating effects of 6 years of pre-senile dementia I spoke on her funeral, saying that on that occasion only the last percent of her died; the rest had disappeared over the period of these 6 years. Years in which I grew up as an adolescent and later student. Trying to find my way in life without parents, and being rather successful in that, the situation with my mother felt like a burden. I felt obliged to visit my mother in the nursing home, where she went when I was 19, but I was abhorred with everything in ” that place”; the smells, the sounds, the whole ambiance and in the middle of that the woman that used to be my mother but was rapidly losing my respect and unable to connect with me. Many years later I realized (in therapy) that I was actually angry with both my parents of ” leaving me ” so early…

Now, 30 years (!!) later, the message of “Moving your soul” is impacting me with sadness and shame. How little I tried to connect with my mother in those days when it would still be possible albeit in a different way. How selfish I “gave myself permission” to visit her maximum only an hour per week by concluding “that that shaking woman in a wheelchair was not really my mother anymore”. Fact is that I had no clue that another perspective was possible. I didn’t have the awareness that many years of maintaining a loving connection were still possible and would not only have honoured my mother but even more the existential parental bond between her and me. I didn’t have the skills nor the maturity and courage to connect with her in more creative ways and to meet her in the deep fears that probably have produced her ongoing anxiety.

With years passing by my empathy with my mother in that nursing home grew and with it the feelings of guilt of not having been the loving son she deserved.

A few years ago I was with a Zulu guide on a trail in the jungle of South Africa. He told me that Zulus believe that ancestors can speak to us when they want through the wind and the rain. Some days later, during a gentle breeze to practice meditation I climbed in a tree, lay down myself on a branch and closed my eyes. For the first time in my life in a dream my mother came to me while the wind gentle moved my branch. She smiled and kissed me and said that she always had understood and forgiven my behaviour and that nothing was served by punishing myself. Finally I reconciled with this painful scar.

Ted

Look at me, I am here!

I will never be able to forget your look.  Having to leave you there hurt so much, I felt like every day that passed I was leaving a little piece of my heart there with you.  To go, to leave you in that place, surrounded by people with lost minds, disoriented by pain and illness,  lost in their solitude, missing the essential, the only thing that in reality could give them peace and consolation: love, only love!

I managed to decipher their cries, their shouts and their silences.  In reality all they demanded was:

“Look at me, I am here, I exist, I can’t control my body, but I am still here, I need your respect, your caress, your voice, and to be somehow listened to. We are stuck here, but we are still alive. Our memory has abandoned us, but you can still make use of yours, don’t forget about us, don’t just leave us behind as something that no longer feels, no longer exists.  We are here, we are still here, help us, help us…”

Only love can give them everything that this cruel disease of Alzheimer’s has stolen from them.

If I have learned anything during this time, it is that love has no bounds.  That as a result of this illness, by your side, my heart gradually got bigger and bigger.  I had so much to give you that it could have been no other way.

I always knew how much I loved you.  I felt as though my love for you ran through the maze of veins that cover my body, surging forwards with every beat, dilating my veins to empty itself and beat hard into my heart, returning to it again and again until it became exhausted and gave out.

My love was able to abandon the body he was trapped in, on the 1st of May of 2014, at 64 years of age, following eleven years of illness.

Today he is free, amongst us, in the universe, close to the stars.  And today it is he, with his light, who caresses and takes care of us.

Merce.

Madrid, Spain.

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