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.

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Olga Romanillos

Something has changed

change alzheimers

Something has changed. She chews the food I have just given her once or twice and then stops. To my surprise and desperation, she has stopped chewing and, with an inquisitive gaze, looks to one side and another, while the food remains immobile in her mouth. It is as if she has lost the automatic reflex to chew and swallow. I have to give her a little fluid so that this first impulse, which still remains, reactivates and finally my mother swallows everything in her mouth.

And all of a sudden fear, that old familiar feeling, rears its ugly head again. The fear of once again facing another backwards step on the descending stairway that Alzheimer’s represents in a person’s life. My mother, who I now feed as she used to feed me so many years ago, who watched me grow as I now watch her fade away. And I often get so frustrated in my determination to ensure she retains the faculties she has left. She, unaware of my fears and frustrations (or maybe not…) looks at me, smiles, then looks away, frowns, flitting in and out of her world and all of a sudden, within a fraction of a second, our eyes meet and we enjoy an instant of true connection.

She knows nothing of my fears, which change as the months and years go by. Looking back, I see I went through the fear of her no longer being an independent woman, the fear that she would stop walking, the fear that she would no longer recognise my brother or me, the fear that she would stop talking… All that has already happened and I now face new fears, the fear that she has forgotten how to eat.

At the care home my mother has lived in for the past five years, I witness this next phase that is now looming. Other residents who have already slipped down this step: choke when they eat, the food enters their airways and causes them anxious moments of suffocation. Others have a catheter inserted into an opening in their abdomen, which takes the food directly in their stomach.

I recently discovered that my brother and I can decide, when the times comes, about whether to feed my mother through a catheter or not. My first reaction was once again surprise and fear: will I soon have to make a decision that means life or death for my mother, perhaps within a few months? How am I going to decide one way or another? If we opt to refuse the catheter we will watch her die, by suffocation or starvation. If they insert the catheter, we will be prolonging a life with even less quality that she has had until now, as well as subjecting her to a surgical intervention and a very tough adaptation period.

This is one of the many painful and decisive moments in the life of someone with a family member suffering from Alzheimer’s or similar dementia. One of those moments in which we most acutely feel the loneliness and despair of accompanying and caring for someone we love so much. And it is one of those moments in which we need not only medical information to provide us with clarity on the progress of the disease and its consequences, but also the support of someone who can help us take these decisions in accordance with our values. Because no-one is going to tell us what is best for our loved one. What is best for my mother? I want to avoid her suffering, of course, but what is the best way to do that?

Many people will advise us, with the best of intentions. But at that time, us family members, the ones who must make these decisions, need to listen to our own voice and trust our own wisdom, the wisdom that is born from the lives we have lived and the deep love we feel for our loved one… and for ourselves. That is why, more than advice, we need someone who is able to listen to that wise voice that lives inside us and which sometimes gets drowned out amongst the fear, guilt or, simply, the sadness and pain.

I lift the spoon again, ¨come on mum, it’s really delicious¨. My mother looks at me and smiles, and opens her mouth, and then swallows… and I, with something as simple as this, am simply happy.

Olga Romanillos

People with dementia provide a voice in the world that should be heard

These days , after our colleague and friend Begoña has left us, we have been remembering all those days that provided us with her wise presence in Moving your Soul . And part of her legacy is this article we publish today, and, for some reason, was not released at the time she wrote it. In this article Begoña challenges us to look in the deepest part of ourselves, as individuals and as a system. She encourages us to let us walk between light and shadow, and all with the noble aim of making this world a better and more beautiful place. As beautiful and noble as you are, Begoña… ! Curiously, she speaks of Alzheimer as a voice to listen in today’s world, but it is the voice of Begoña what we listen through her written words, a voice at the same time compassionate and provocative, like she was. A voice that must also be heard.

“If one single drop of water contains the secret of the immense ocean, as Kalhil Gibran said, all possible manifestations of life are to be found in one manifestation of the human being. What happens is that we choose what to identify with and we normally do so by choosing between two possibilities. Accepting one with its corresponding subjective evaluation. And discounting another, which also has a subjective evaluation.

So for example we might say: ¨I am an evolved, intelligent being in control of my own destiny”, against “I am not an irrational, stupid being with no control over my destiny¨.

However, that which we reject does not disappear but rather becomes integrated into the part of our soul we call the Shade or Shadow. And this worries us a lot because it is made up of everything we reject of this society and we believe it should disappear from reality in order for it to be healthy and perfect. Without realising that this shade contains everything the world needs to be healthy and perfect.

The shadow becomes illness. When an illness or diseases, such as Alzheimer’s, massively increases within a period of time, there is a very specific message that the system is ignoring. Our fear of confronting this shade or shadow prevents us from moving forwards and therefore healing’. And yet only the courage to face the shadow will save us.

Alzheimer’s is an escape to another planet probably less painful than the one in which reason, productivity, everything fast, young, controlled, rational, logical, material, realistic, etc. reigns, repudiating all of their opposites: the irrational, lack of productivity, the slow, old, corporal, illogical, spiritual, fantastical… Alzheimer’s is a powerful voice for the illness suffered by our system, increasingly early, widespread and more acute.

Moving your Soul, like Percival in the legend of the Grail, confronts the shadow, Alzheimer’s, asking WHAT DOES OUR SYSTEM NEED TO BE COMPLETE? and in this journey to the deepest darkness of the soul, we have found a higher message, one which warns that healthy and perfect systems are the ones that make up the light and shade that allow our soul to keep moving. And this is our contribution, to walk between light and shade, reflecting what is needed to make the world more inhabitable, more beautiful”.

Begoña Gutiérrez Ubierna

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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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

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

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

Opening up to Alzheimer´s

It is not easy to accept the diagnosis, and it is hard to digest so many emotions. To witness our loved one gradually deteriorating and losing some of his capabilities can be painful; to know that that person will be eventually depending on us to function, day after day, is a huge emotional and logistical burden hard to bear.

It is not easy.

We acknowledge all the hardness of this complex process. And at the same time, we go a step further: once accepted, we also see Alzheimer’s disease as a great opportunity. A unique opportunity in the hands of the caregiver to grow as a person, to live in a more conscious and fulfilling way, creating new nuances in the relationship with the loved one with dementia and those around him, and ultimately, a precious opportunity to be happier.

When dementia sneaks into our homes, the way we have communicated regularly with our loved one might not work any longer, and it is then when new bridges and channels of communication can be built up, more direct ones, simpler, and why not, maybe even more authentic.

Let us take advantage of our loved one´s forgetfulness to allow ourselves to get rid of old grudges too, to delete differences from the past; because when we are able to see our loved one with a new lens and we dare to present ourselves as we are, then we are creating space for more rewarding, authentic and profound communication.

To open up to Alzheimer’s is to open up to the unknown, to a script yet unwritten, to pain, fear, to our own vulnerability, to the ephemeral nature of our journey through life. It also means to be opened to new experiences, such that we would not even dream of, to the greatness of our loved one which is our own greatness. We will be ultimately embracing life itself, and what it has to offer, and above all, embracing our essence as unique human beings.

Susana García, Moving your Soul

Through the looking glass

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

Alice looked round her in great surprise. `Why, I do believe we’ve been under this tree the whole time! Everything’s just as it was!’

`Of course it is,’ said the Queen, `what would you have it?’

`Well, in our country,’ said Alice, still panting a little, `you’d generally get to somewhere else — if you ran very fast for a long time, as we’ve been doing.’

`A slow sort of country!’ said the Queen. `Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!’

Through the Looking Glass – Lewis Carroll 
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A message from… Alzheimer’s

Alzheimer's

It was a day like any other when I asked Esther a question. She was an 80 year old woman from Galicia who had been a teacher for 40 years and who had five adorable children and a husband who would come to pick her up at de Day Care Centre every afternoon. Esther didn’t seem to listen to my question, she had an absent gaze, as if nothing mattered anymore. I was sitting patiently, by her side, without expecting anything and expecting everything. And suddenly, without having to repeat the question, she looked up and stared at me with her big chocolate colored eyes, then as alive as a little girl that had just discovered something new. Esther, I had asked “What do we have to do when a child is rebellious?”. In an instant she became as lucid as a firefly, and with a clear voice Esther answered… “AFFECTION”… “Affection, Esther?”, I asked, “And if they are very rebellious?”, “They are rebellious because they do not have affection” she answered, “AFFECTION” she repeated…

After that she lowered her head and dived back into her mind, in a lake of blank spaces.

Esther suffers from a moderate stage of Alzheimer’s and, occasionally shows the lucidity of greater wisdom.

Stimulating them and knowing how to wait for these moments, not forgetting them, receiving all that people with Alzheimer’s give us, giving them our psico-emotional support, patience, love and respect, helps to maintain their satisfaction and well-being, even though their needs and priorities may have changed.

Elena Cárdenas.

www.psicologiaactiva.es

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