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

A wedding at the care home?

¨Mum’s talking nonsense¨, said Marisol to her sister Juani, ¨she says she has been at a wedding!!¨ ¨Well, don’t worry, she is 92 years old and such lapses are normal..¨

But no; Soledad, the mother of the two sisters was not talking nonsense, even though she is living in a care home where most of the residents suffer from Alzheimer’s or similar dementias.

And the thing is, the day following our wedding near Madrid last June, my new husband and I wanted to share our joy with the residents, family members and staff at the care home where my mother has been living for almost five years.  We put our glad rags back on again, grabbed some bottles of cava and off we went, because our wedding would not have been complete without this second celebration.

Looking at the photo that illustrates this text, I don’t think I need to add any words to describe the special experience that this celebration involved, during which we even repeated our first dance from the day before!

The white dress, the bride’s bouquet, the first dance, the toast… These symbols that in our culture are linked to one of the most joyous rituals, so imbued with significance from the cycle of life, are engraved upon our memory at the very deepest level. A level at which forgetting is simply not possible, despite the cognitive deterioration of people with Alzheimer’s.

Some told us about their own weddings, with tears in their eyes.  Others, with a lost gaze and the closed expression of those who have retired to their own little corner of solitude, broke into a smile that touched our hearts.

How about if we remembered a little more often that people who live in care homes are not parked in life?

What effect would it have on them?

What impact would it have on us?

And why am I speaking about “them” and “us”?

What have we invented that creates separation instead of the togetherness and connection that we all crave?

Olga Romanillos

Moving your Soul

People with Alzheimer’s keep their “vital spark” intact until the very end of their lives

People with Alzheimer’s continue to be people right up until their last breath and, like any other human being, retain intact the need to communicate. Even when we believe them to be immersed in their own world, or when they no longer have the facility with words like before.

But this does not mean they have dispensed with their essential need to express themselves, and even less so their ability to express those same emotions that we, the so-called sane, try so often to hide or mask. People with Alzheimer’s, just like you and me, feel anger, fear, sorrow, frustration and also joy, curiosity, hope, love; they retain intact that impulse that springs from the innermost part of ourselves to let the world know that they are still here, that they need to be seen, that although today they may not be very aware of where they are, they continue to be important and their lives continue to have meaning.

It is within our grasp to recognise this need and to provide them with the opportunity to live a more dignified life.

It is not easy to communicate with another human being when the words no longer flow.  Neither is it easy to converse with another person when their conversation seems to lack logic or what we call common sense.

It is not easy to find alternative ways to get closer to them when, until now, we have always used reason and words as a common bond.

But however difficult it may seem, countless testimonials every day prove to us that all of this is possible.

In order to find a way we must simply be willing to look and to be open to connecting with that part of ourselves that goes beyond the circuits of logic; that part of us that understands not reason but emotions, with our very BEING. Only then will we know how to cross the bridge that will take us to meet that other human being that is our loved one with Alzheimer’s.

Susana García -Moving your Soul-

Happiness within misfortune

For some people their lives go by with ups and downs, but they are essentially happy from childhood to later life.  Friends, family, work and also their love lives combine to form a positive vital and chronological whole in which bad times, those that there are, remain eclipsed by the happiness experienced.  This is how my life has been for 75 years, during which I enjoyed a happy childhood, an uneventful adolescence, a settled adulthood and satisfactory work, all of which was crowned by meeting Carmen at University, who would later become my wife and the mother of my two children. All told, 48 happy years together in which, as well as excellent communication, we shared joys, plans, a few uncertainties that I can barely even remember, and all this as a whole gave us a happy life.

When this life was at its very peak, in later life when all the sharp edges have been worn away, when retirement offers freedom without the responsibilities of education, as this is provided to the grandchildren by the children, who we in turn educated, those grandchildren who are such a boon to happiness, however at that precise moment, without any preamble, misfortune strikes. Just when you have made the most plans with which to add the finishing touches to a happy life, everything crumbles around you with the appearance of Alzheimer’s. When you notice a slight forgetfulness in your loved one that then becomes significant, anxiety in the face of the first time they get lost in town, incoherence during conversation, incontinence etc., everything collapses around you, the plans with which to crown a happy life are over and a new stage begins for which you are ill-prepared. The suffering, feeling of guilt and sadness become inseparable companions. When you have spent months experiencing these sensations, you begin to reflect and to approach things differently, within your misfortune you realise that the world isn’t going to end, that it shouldn’t end, that simply a new and final stage has begun, an unwanted one, but one which must be gone through, and that you must not let yourself be consumed by despair. Much strength is required for this and you feel as though something inside you is pushing you onwards and renewing the inner strength you thought lost, adding to this is the lost gaze of your loved one who is no longer there, who no longer exists, her smile dimmed, the contact of her hand, a gentle embrace in which you notice her body close to yours and an almost furtive kiss, like when we were young.

The sensations all this produces are new and lead to a new happiness, different to the life you previously lived, but happiness nonetheless. The feeling of guilt from having taken her to a care home disappears, you accept she is no longer the woman you married; she is a different human being who inspires in you great tenderness and a new kind of love. You are happy taking her out for a walk and strolling hand in hand, having a drink and seeing how happy it makes her, you even notice how she wants you with her when you speak with someone else, as if she were jealous and didn’t want to lose you. Seeing how she reacts when you go and visit her, she probably doesn’t recognise you, but she does recognise in you someone who gives her affection, kindness, protection and tenderness, which makes her smile faintly.  All this softens the misfortune and you get hopeful every afternoon and you begin, even though it seems contradictory, to experience a different type of happiness and love. You return home alone, but the loneliness no longer buries you, it no longer depresses you, there is sadness but it is different now, it is no longer devastating and deep down you are longing for the time to come when you can see her again to experience that new sensation. Being with her is no longer a burden, it is no longer an effort, it is a new romance, it is a new sensation of love which reawakens feelings you thought had long gone.  Deep down you feel happy and joyous, it is happiness within misfortune.

Manuel Costa

Valencia, Spain

Alzheimer’s and personal growth

I never imagined that the most important lessons I would learn from my mother, would be imparted without her even realising it, during the stage of her life dominated by Alzheimer’s.  I am sure she would be surprised too if she knew how much she continues to teach me, from her wheelchair, with her mobility and speech almost gone…

My mother has helped me get to know myself better and every day she shows me my light and my shade without judging me. She invites me to get the very best out of myself and also challenges the most limiting aspects of my personality. An example: that habit of mine of always doing something, of keeping myself active and productive, impatient, always thinking of the next thing to be done.

When I am with her, this doesn’t work.

It doesn’t work because if I want to feel close to her, I must enter into the bubble she inhabits and which is called NOW.  I get to the care home where she lives, I say hello, I search for her eyes, I sit down next to her… and everything stops. Even her afternoon jelly at six becomes an event requiring my total presence.   My mother has taught me that not everything is about Doing, that simply Being is much more important, above all when it comes to creating closeness and intimacy with the people we love.

And this thing that happens to me, this act of confronting my own patterns of behaviour, is what I also see when I hold workshops for relatives of Alzheimer’s patients with the Moving your Soul team.  Other fathers, mothers, spouses, siblings are unwitting teachers of life for these family members that look after them and who, in one way or another, watch over them.

One of them must learn to let go, another to say “I love you”, a third to look after him or herself, or to ask for help… each of us brings to this illness, to this school of life, our own particular notebook, in which we must learn how to write a little better.  To humbly return to the role of student and learn the lessons we didn’t quite get to.

This is why, at Moving Your Soul one of our most fundamental beliefs is:

Opening ourselves up to dementia is also opening ourselves up to the opportunities for personal and relational growth that come with it.

And the fact is that our approach comes from the discipline of coaching, which seeks to unlock the potential of each and every human being, in search of completeness and growth.  Even in the most adverse circumstances of life.

Olga Romanillos

You are perfect

Mom loves to go for a ride in the car. It is not important to her where we are going. For the small price of two hours, I can bring her the joy of being out. She grins, claps her hands on her legs, and when the mountains come into view, she exclaims, “Oh! Look!”

My spirits are lifted when I feel how happy she is. I know I am doing more for her quality of life than anything else I can conceive. Today we took the short drive to a nearby park and found a high spot to park overlooking the water and the mountains in the distance. A former pilot, she spots the contrails and points them out happily. We remark on the clear blue sky on this sunny day in winter. Canada geese fly over in formation and she immediately tells me how many there are in the flock. And there actually are seven, I am astonished to see. She looks over at me and gives me the most loving smile I have ever seen and says haltingly, “You are perfect!”

This is not the first time my mother has expressed in the most clear and pure way how much she loves me, and I am free with my expressions to her. It is easy, as she has taught me in the last few years, and nothing is more important. I think to myself: “Hold this moment! Someday you will need to remember it!” My eyes fill with tears. And then so do hers. We grin rather stupidly at each other, and laugh. It is a perfect day.

Jeanette Rockers

¨Chisgaravís¨

Too many moments, too many good moments, to see that we now barely have a lost stare, disordered words and the gift of an odd smile that may come from a happy thought some small moment of lucidity has allowed her to salvage.  Chisgaravís.

That’s how it all began.  A word invented to replace the first lapses of the mind: ¨pass me the chisgaravís¨, ¨put your chisgaravís on, its cold¨… It was fun; we even used “her word”, because “obviously” it was just the absent-mindedness of the elderly.  It couldn’t be anything else.

But bit by bit, very gradually, the moment arrives when too many words are missing, the first confessions of forgetfulness: “I’ve got to give you something and I don’t know what it is “. And I would say “let us help you mum, there’s lots of us to help you”, but she would reply: “If I let you help me, it will be the end”. Since then we learnt to reply to her repeated questions, as if each time were the first time she had asked them, to help her by making her feel that it was she who was doing things, to ignore it every time she made a mistake. To check everything she did without her realising.  Because the best medicine for this disease is giving.

Now, Laila looks at us, sometimes she finds us and is gladdened, and others she doesn’t know who we are, but I am sure that every word we say, every kiss we give her, every song she listens to (music was her passion) holds a space – however small – in her mind. On our part, we will continue to celebrate every smile, every gesture of happiness when she finds us at her side.

She has always given so much… she must receive so much more.

Jeannette Cid André

Music for an encounter

Moving Your Soul, Another Way To Live With Alzheimer's

This morning at the care home.

Me: I love how you play.

Paco:  It’s Albéniz.  I’m glad you’re enjoying the music.  I think life is to be enjoyed, that is why God gave it to us.

Me: I know, it’s just that we have so much always on our minds..

Paco: Ah, the mind, the poor mind…It gets used to whatever we give it.  My father’s got used to wine..

Me: Yes, but music nourishes the soul.

Paco: We have neglected the soul… What beautiful eyes you have, how they shine… They brighten my morning.

Me: Thank you, your music is brightening mine.

Then he took my hand and, tenderly looking at me, he said “may God bless you”. To which I could only reply “may God bless you too ¨.

Paco has had Alzheimer’s for 4 years, and he lives in the care home where my mother is also living.

Today Paco reminded me that to connect with another human being we need simply to look at them and listen to them with our hearts.  A life lesson.

Olga