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

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

A granddaughter’s pride

A Granddaughter’s Pride

Just a week ago I experienced one of those moments that go beyond pure emotion. One of those unique moments which reconcile you to life and which close a circle, which make you experience and FEEL beauty… which is ultimately nothing more than magic condensed down into one single instant.

That day I got up with a burning desire to see my granddad after having written about him in my blog.  I needed to see him, to tell him about it.  I thought that the dementia he suffered from would probably prevent him from understanding me, but I still hoped for some magic.  My grandfather had lost practically all of his faculties, but there is something remaining of his personality that simply refuses to disappear: tenderness. As soon as he sees you, my granddad grabs you by the hands and covers them in kisses.  My granddad hugs you with such strength that his whole body trembles, almost suffocating, as if he wouldn’t mind dying this way. My granddad cries from pure emotion, from infinite love, when he takes your face between his hands and mumbles “I love you”.  My grandfather… who can now barely speak, but neither does he need to.

That day, life decided to reward me with one the very few vestiges of his lucidity.  I knew it from the way he looked at me.  He lifted his eyebrows, nodded and grabbed my hands, so I showed him the blog on my mobile, with the photo I had published of him. He let go of my hands, held the mobile in his own trembling ones and his eyes filled with tears as he recognised himself.  I explained that I had written about him, about all the things he had taught me, his eternal support and his unconditional love. I asked him if he wanted me to read him the post, and he nodded, returning the mobile to me and once again holding my hand.

I read it to him, into his ear.  In full.  I don’t think I have ever read anything with such emotion, intensity and respect, nor felt so proud of writing. My grandfather pressed my hand at every inflection… and towards the end he collapsed into a flood of tears, which dropped one by one onto my hands. I managed to suppress the lump in my throat and the unbearable urge to cry, held tight in his arms, erasing the hurt of these past years, but when I finished reading, I broke down.  We hugged each other, crying, and then he grabbed my face between his hands and whispered: “My angel“. As always.  Between tears I thanked him for everything, I told him that I loved him with all my heart, that it was impossible for anyone to feel prouder, and that if life allowed us to repeat our time in this world I would be his granddaughter again a thousand times over. He tried to speak, unsuccessfully…. But the way he looked at me, the way he stroked my face, and pressed my hand… were the greatest and most clamorous manifestations of love and pride that one person can gift to another.

At that eternal moment, my husband arrived and took a photo of us.  I dried my tears and smiled from the bottom of my heart, feeling happy, complete… In that instant I projected love, I felt in harmony with the world, fortunate to have managed to capture the love of an entire lifetime in one sole instant.

This photo speaks of the pride of a granddaughter, of the apprentice who clings to the hands of her master and feels his strength despite his weakened body. It speaks of a type of love that someone should treasure for all of their life.  Be thankful for it.  And enjoy it…. until the very last breath.This photo speaks of a love that grows and strengthens over time, a pure love, a love that understands neither ages nor frontiers, which is beyond life and death; a timeless love, eternal, that type of love that doesnt need words, that can be expressed simply through glances, caresses and simple knowing gestures. The love that my grandfather and I have always professed to each other… and which last Saturday burst forth despite the devastating effects of his dementia and the distressing and inexorable progress of a goodbye that we are all destined to EXPERIENCE.

Leaving everything tied up before departing…..

Fifteen days before his death, my father knew that he would soon be leaving us.  And it’s strange, as his advanced Alzheimer’s did not prevent him from leaving his affairs in good order so that he could depart in peace.  Like every other night he was put to bed by the nursing assistant next to the portrait of my mother, and I laid down beside him, as close to him as I could get, my eyes talking to his eyes in the semi-darkness of the room, while his fingers gently pushed aside any stray wisps of hair, tucking them behind my ear.  Greater tenderness was impossible.  Nor greater understanding, a pleasure imprinted on my very cells forever. A warmth in the very depths of my chest which would prevent me from shivering from cold.  True communication, forged from absolute presence.  And a few minutes may have passed, a few hours, when my father fell into what seemed to be a deep sleep judging by his breathing. I decided to stay a few minutes more to continue enjoying this time together.  At that moment, my father opened his eyes, and with a clear and firm voice like his voice from the past, he said “We have to call your cousin”.  The strength of his voice surprised me and obeying as I had done as a child, I said “Ok dad, what cousin do you want me to call and what shall I say?  With the patience of a parent he replied: “Your cousin, so that he can take charge of the house and the family from now on.”  With a knot in my throat, given that at that moment I knew for certain what was coming, I promised my father that I would do so: “Yes of course, I will call him.  Don’t worry about a thing, he will take care of everything.”  “That’s it, that’s it” said my father, while he put his arm round my neck and pulled me towards him to give me one of his sweetest kisses.”

And that is how I think my father, Facundo, was able to ready himself to depart in peace.  Knowing that someone was going to replace him in the care of his legacy, his family, his home.  That he could leave safe in the knowledge that what he had looked after with such care and devotion would remain in good hands.

Rest in peace, Dad.

Susana García, Moving your Soul

The day my father escaped from the nursing home

Like every afternoon, upon arriving, I parked my car in the shade of the first available tree during those torrid days of July. And like every day, I felt that stab of concern in my stomach and in my legs the urgency to get there as soon as possible and receive that huge smile and see his dancing eyes. After wishing the receptionists a good afternoon, I climbed the stairs three at a time, and already smiling I opened the door to the hall in which he tended to stroll as if instinctively aware of my arrival. When I didn’t see him I went straight to his room.  He wasn’t there.  He must be in the bathroom.  Not there either.  Pinching a snack perhaps – I had been told that on numerous occasions my father snuck into the kitchen and stealthily snuck a few cupcakes into his pockets, he always did have a sweet tooth- Nothing.

And he left…..

            Even today, two years later, I still feel the same hammering in my head as that day and I am unable to remember everything that happened clearly although it is undoubtedly engraved in fire, second by second, detail by detail, on the universe of my subconscious.

My father wasn’t there and no-one had a clue about where he might be.  Incredulity, anxiety, paralysis, every cell in my body wanted to waken from this hideous dream, this nightmare that could not really be happening to me, it couldn’t be, it just wasn’t fair for my mother.

We had taken my father to this home so that my mother could rest for at least a few weeks.  Anyone who has a family member with Alzheimer’s will understand better than anyone the gradual exhaustion of the principal carer, that person, in our case my mother, who without expecting anything in return spends every hour of every day, year in year out, providing the care and attention that their loved one with dementia requires. Every week a new need, a little worse, a little more tired ….

Needless to say those more than 10 hours during which my father was gallivanting around the streets of Madrid on that hot July day, were the very worst of my entire life. Many images crowding in, the constant presence of my family and friends, many kilometres at the wheel, hundreds of streets and corners covered with hope in our hearts and also with the fear of finding something we didn’t want to find.

The adventures of Facundo

Where could my father be, that short and slim gentleman with advanced Alzheimer’s, a rebel from the moment he came into this world, some 76 years ago, disoriented, without identification and without a cent in his pocket? The harder I tried to put myself in his shoes, the more baffled I became.  Dad, where did you need to go?  What is driving each of your steps?

If my brain had of been lucid that afternoon, I would have listened to the voice of my intuition and known that my father needed to do what he did, that his heart was marking out the rhythm of his steps. Thanks to clues obtained by the incredible people around me we found out about the adventures of Facundo, my father.

Firstly, and after hiding behind a large pot plant next to the main door, my father managed to sneak out of the home by blending in with the visiting relatives coming and going – this was recorded -.  This is where his adventure began and although we do not know the exact order, he made two stops at sundry bars where he ordered, drank and failed to pay for a beer or two. Since his early retirement, more than 15 years ago, my father’s social life had been reduced to a two hour morning walk – a ritual he never missed – and a subsequent aperitif in one of the bars in the neighbourhood he had lived in all his life, my neighbourhood, where he would converse with the usual neighbours, always through his most well-developed sense, his extraordinary sense of humour and his jokes.

So that July afternoon my father did what he knew best, what had been imprinted on his brain from so many years of routine: walking, chatting with others, telling jokes and drinking his little beers. No more and no less.  As basic and as obvious as that.  But for more than 15 years, after the walk and the aperitif, my father always went home.

So that day, after his stroll, his funny stories and his beers, my father needed to return home. According to witnesses, he approached a taxi driver waiting for clients and asked him how to get to Calle Narváez. It was in that street that my father had his first home upon arriving in Madrid from Córdoba (he must have been around 14 years of ages) and where he lived with his mother and his sisters until he married, some twenty years later. This street was more than 10km from where my father was.  So he must have become disoriented and just continued walking.

 

I need to go home

He was brought home from the outskirts of Madrid by a taxi driver, an angel, who chose not to look the other way that early July morning and who chose to take the time and trouble to find out who this lost man of fragile appearance was, who wanted to GO HOME but without knowing any further details than that.

No hero was ever received with such happiness and of course with so much love than my father, Facundo, when he climbed out of that taxi. Surprised to see so many of his loved ones, as soon as he put his foot on the ground he blessed us with one of his most impressive smiles, which for a brief moment left us all speechless and with our hearts leaping out of our chests, more alive and thankful than ever.

Even today there are many questions about what happened during those ten hours that we will never have answers to. How did he manage to get on the metro? Was it a coincidence that from of the Moncloa lines he chose the one that would take him to Villaverde Alto, where he had his first job? What was going through his mind all that time?  Did he miss us very much?

 

At the end of the day, my father did what we all would have done

Facundo is no longer with us to tell us any more about that day, but he did what anyone would have done: fleeing from a place he didn’t recognise and in which he felt very uncomfortable, to doing what he knew best and which would bring him greater wellbeing, to them return to his nest, his home, where he felt secure and surrounded by love. His heart ultimately led him home.  People with Alzheimer’s are still people.  Just like us, those of us who are deemed to be “sane”, they also need to feel loved, safe, recognised and integrated.  Although they express it in a different way. It is in fact up to us to want to recognise these needs and know how to listen to them.

Susana García

Summer afternoon

She is a beautiful woman, her white hair, her face marked with wrinkles that remind us of a life filled with experiences: of laughter, of tears, of loves, of fears, of successes, of failures, of dawns, of sunsets, of days and nights lived – some with joy and others with sadness – like the rest of us mortals. Her body is now as fragile as that of a new born bird in its nest, her mind touched by a ruthless sickness and her soul, her soul unharmed.

She is a woman who has lost her access to memories and has now little access to words. It is for this reason that many people when looking at her cannot see her. “She is not there,” they might say, maybe because their own painful fear or their deep sorrow or their protective relaxed attitude have made their eyes blind to her gaze; a gaze that still reflects  the undimmed spark of life in her soul.

There is her daughter arriving at the nursing home and she enters the door almost as a sea breeze in this city of arid lands; her daughter who has fought in every way to keep her eyesight intact and whose eyes light up as she sees her from afar sitting in an armchair. She walks up to her, says hello, kisses her, caresses her, she sees her!

The glance of the woman with white hair is lost inside, somewhere inside her soul, in a place that not even her daughter can understand and even if it is so, her daughter never changes her way of looking at her filled with profound, immense, eternal love. And it is then that the everyday miracle happens: the baby bird woman glances back at her, maybe simply feeling seen, returns to the here and now, looks up and with her eyes, smiles.

It has always been said that love makes miracles happen and it is indeed a miracle, as natural as the birth of a child, to see how without words these two women speak, connect and share another afternoon.

Pilar Rueda

Two girls playing together

two girls alzheimers

What if we were to look at dementia as a transition phase between life and death, experienced through the eyes of a child?  People with Alzheimer’s leave suffering from the past and worries about the future behind, to live fully in the present, like a child.

And how can I learn to relate to someone who functions this way in the world? What must I leave behind?  What must I open myself up to?

Every time I sit down with my mother and she looks at me with her eyes full of wonder, pleasure, sadness or anger, part of me wants to understand her, know what is wrong with her, ask her what she needs … This part of me, the daughter I was, is not satisfied with that expression of herself at that moment, the daughter wants more…

And by wanting more I lose what is left.  I lose the simplicity of enjoying the moment: she smiles, I smile, she gets cross, I get cross, I look at her, and she looks at me …A return to the essential.  We are together and nothing else matters.  Life is a game.

My mother and I sometimes play together, when I get over the urge to understand and relate to her as I relate to everything and everyone, as a rational, responsible, adult person.

Because when I leave this behind, and I open myself up to the possibility of reinventing our relationship every minute we are together, we become two girls playing. Two girls who just met in a park.  We don’t want to speak of the past or make plans for the future, there is just wonder and pleasure: “this is my spade”, “that is my favourite swing”, “let’s go to the pond”…

As an adult daughter, I know that this disease is a process with no return.  A painful journey during which each day I lose a little of the person I love until the moment at which she will definitively leave.

As a playmate I only want to be with her now, just as she is, enjoying every little detail: a shared biscuit when it’s snack time at the home, the morning bath, a sudden gust of wind that makes her exclaim “it’s so cold”.

This is why I decided to also return to my childhood and meet up with my mother there, to one day be able to bid her goodbye with a smile, knowing that we enjoyed every last minute of the time we shared.

Olga Romanillos

(In the photo, my mother with my two nieces.  Don’t they share the same light?)