A sea of gifts

June of 2016. A neurologist confirmed the suspicion that had lingered for a couple of years: my father has Alzheimer’s. The news arrived with no great fanfare from the hands of a professional who, at last, put a name to what my mother, my brother and I had instinctively known.

“Dad is not right, he’s not the same, he doesn’t look, or communicate the same…”.

After a few years of failing to get any answers, we finally received confirmation that was as painful as it was a source of relief.

Pain, upon hearing the name of a neuro-degenerative disease that to-date has no cure. Relief, to know that at long last I could prepare myself, above all emotionally, to accompany my family on this new stage of our shared lives. And I say “my family” and not just my father because the challenge was one for all three of us to face, each of us with our own unique and individual way of making full sense of what life had in store for us.

To-date, there has been so much uncertainty, above all in the face of a treatment that changes my father’s attitude, energy and mood on a daily basis. However, although moments persist of adult sadness at not recognising my father, together with a child’s sense of abandonment in being unable to find the person who used to comfort me, I am living through one of the most beautiful, profound and serene periods of knowing a wonderful human being who has given me, and continues to give me, so very much.

I am sharing moments with him that directly reach my heart…

From the very first moments when, on holiday on the seafront, he shared his fear and his sadness and begged me in tears to never leave him. Through to more recent days, in which he admitted to me that he was “not very chatty”, almost by way of apology, while we continued strolling through the countryside and, all of a sudden, he began to speak about very personal moments and things he had never before shared with his daughter.

Today many filters have disappeared in the conversations with my father. We find ourselves amidst the words that remain and we communicate with frequent hugs which I unashamedly demand. And we connect with the songs we belt out at the top of our voices in the car or in the kitchen while we share some dance steps. There are still the classics like Nat King Cole that exude as much elegance as when my father would slowly get ready, with so much attention to detail, to go for a walk. And, like I always do, I remind him how good he smells, he never steps a foot outside the door without spraying himself with cologne.

alzheimers

A spark has gone from my father’s eyes, but a spark does remain in the connection I have discovered with him, though our hugs, laughter and all the affection he envelops me in. His insecurity becomes my energy to guide him, accompany him and take care of him. And I admire him tremendously for how he fights so hard in his own way, so determined to lay the table, despite the tablecloth ending up crumpled and the cutlery where it shouldn’t be, in going out in the neighbourhood to do errands with the note my mother gives him, or in finishing a “word soup”, even if we have to tell him where the missing word is.

Admiration of my father for his courage, his inner beauty, his light and the deep love he feels for his family, strengths he shares with my mother, a woman as extraordinary as the man she married almost 43 years ago now.

Life is blessing me with the immense gift of reminding me that everything beautiful, everything that matters, is to be found in the moments shared with my loved ones, that communication is more genuine when words are superfluous and that my path now has a deeper and more serene meaning.

Thank you, Dad,

Mónica.

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Communicating from what remains

These days we are most specially thinking about our dear friend Bego, one of the souls who gave shape to Moving Your Soul – Another way of living with Alzheimer’s. We want to dedicate a special memory to her, as it is a year ago now that she left us. We herewith copy a text that she published in the blog she wrote for the Economist, in a post that specifically spoke about Moving Your Soul and in which she explained a very endearing anecdote. She left us, but she also continues to speak to us from what remains, from what she left behind… and we will be forever grateful…

“These weeks of absence from writing my blog, have been dedicated to ‘Moving Your Soul. Another way of living with Alzheimer’s', a web project, www.movingyoursoul.com, we have just launched between four female coaches committed to making the world a little bit more of a comfortable place to inhabit. On this website, a lot of testimonials share their experiences of communicating with their family members who are affected by Alzheimer’s or other dementias. What is innovative is that this website emphasizes maintaining communication and a relationship with what remains, not what has been lost through dementia.

I have thought so much about this proposition and, as I need to experience in order to gain insight, I headed to various care homes and centres to find out about the reality of Alzheimer’s and how some people manage to overcome the barrier of what is so terrible and embark on a relationshop with their family member. Some days I would return home happy with the progress of my own research, and others I would return broken by having witnessed scenes of such pain. And one day I met a man, Antonio S. who every afternoon went to visit a woman. They used to be lovers when they were young. Then, he emigrated to South America and continued his life, until he retired, childless, unmarried, and decided to return to Spain.

How thoughtful you are. Both times I have seen you, you have brought flowers!, I said to him one of the days we shared the lift. Are you visiting your wife?

No, and I’m not visiting, he replied serenely and with a very clear gaze. I come to be.

For an instant I thought of the film ‘Son of the Bride’ and felt a tear brimming, and I suddenly asked him “What do you mean by that?”

It’s the difference between coming to see her or to be with her, in the place where she is now, he replied simply.

Please forgive me, but I feel there are contradictions on this point because I don’t know if the woman even knows where she is, I openly declared my doubts.

I have nothing to forgive you, - he said expansively - Only if you listen, touch, feel, be, can you communicate with people who suffer from this illness. They haven’t gone, nor do they wander around like penitent souls in Limbo. They are still here or do you think they are invisible, he raised his voice in protest and waved his hand. It’s like a painting, sometimes the painter doesn’t need to fill in all the outlines to paint a portrait. And yet, the spectator never feels that any lines are missing to complete the work.

I felt a little breathless for a few minutes as I listened to this man of scant height yet immense wisdom and then with a small voice, I said: Is that how you see your loved one?

Yes, it is. The flowers make her enter into the beautiful love story we experienced together and which we have somehow resumed. For me, she is still the brunette who used to sing from the window of her house, back there in Lavapiés. And I don’t need any more lines to know that the beautiful women I once had to leave, is still here.

There are few romantics like you left. Please allow me to call you Antonio, I said.

I only expose it, everyone else silences it because it’s frightening to experience reality as it is. Crude, tough, tremendous, but also very powerful, very beautiful. You have to want to see it. This is what the geniuses do. Transcending moving from where they are, like Picasso. Excuse my simile, but this is my passion, my profession. I was an art history teacher for 20 years.

Do you think we could all experience what you speak of?, I remained curious and hooked on his wisdom.

Yes, I am sure of it. Of course, it requires honesty with oneself and parking our ego. The one that is full of masks and stereotypes. But look, we will all be old one day, decrepit, ugly, wrinkled, forgetful, sick and we will still continue being people. Although in order to remain so we need to be seen, listened to, dignified.

María is the luckiest woman in the world, having a friend who actually sees her, the way you see her.

My regret is not having taken her away from her parents home and taken her with me to Venezuela. So my advice is to always enjoy what remains and what is there right now, as it will always be much more than what has gone. He left the lift and headed for the lounge, where the people with Alzheimer’s were.

Standing in front of Maria, dressed in blue and sat on a chair with her head to one side, he gave her a white lily and said to her:

You are the love of my life, brunette..

Referencia: http://www.eleconomista.es/blogs/coaching-todos/?p=722

Nonverbal Communication and Coaching in dementia

In Moving Your Soul we have started a podcast in Spanish, and our second episode is an interview about Nonverbal communication and coaching in dementia. Our special guest is Susana Garcia Pinto, professional coach and trainer, and a member of Moving Your Soul.

“From my experience as a daughter in the intense journey of Alzheimer’s, and as a passionate professional in the fields of human relationships and communication , being part of Moving your Soul makes possible each day the realization of a dream: to be able to show the world that IT IS POSSIBLE, that there is room for plenty of light in the a priori dark path of dementia.”

Susana Garcia Pinto

The Role of Status in Alzheimer’s disease Interactions

As we love this article posted by Evan Bass on his blog, we have asked him permission to share it. And we love it because it talks about something very common in the relationship between family members or caregivers and people with Alzheimer’s: the difficult balance between taking a responsible role to someone who loses her capacities, and giving her all the respect that she deserves.

The Role of Status (Relative Social Position) in Alzheimer’s disease Interactions. Posted by Evan Bass

When approaching relationships in the context of improv theatre, it is essential to keep in mind how your status relates to the other person’s. Is the character you are playing higher, lower, or of equal status in relationship to the other? A butler is lower status to the person he or she is serving. Two butlers are essentially equal status—unless one is the butler in charge and the other is his subordinate. There is definitely a higher and lower status in the roles of a father with his young child. Each interaction we have with others reflects a specific status relationship.

Status is not a passive condition; it affects how we talk to and act with someone else. In general, a person of higher status may “talk down” to someone of lower status, and may not necessarily feel he or she needs to listen well to the other. Someone of lower status almost always listens well to the person with higher status, often attempting to placate him or her. Two people of equal status generally demonstrate mutual respect for each other.

We rarely think about this concept day-to-day, it is almost intuitive, but it is always present. When performing improv in front of an audience, improvisers who want to create believable relationships and situations need to actively think about status in every interaction. So how does this transfer to Alzheimer’s and why is it important? How you relate to someone living with Alzheimer’s—how you enact your status relationship—significantly changes how your interaction plays out.

Try to recall how you felt in an interaction where you assumed you were equal in status with someone, only to find that person “talking down” to you. It immediately makes you feel like you have lost control and, by the end of the interaction, you feel less important. It is natural for a caregiver of someone with Alzheimer’s to feel the need to “take care of” and “protect” the person in times of confusion. When this “protector” takes charge and starts making all the decisions, it results in that person in charge adopting the “higher status” role in the situation and naturally “talking down” to the person being cared for.

While every care partner takes special consideration to avoid treating the person with Alzheimer’s like a child—infantilizing him or her—we inadvertently assume the higher decision-maker status and infantilize without meaning to. An individual who once had control over his life can be lead to feel inferior if that control is completely taken away from him or her. 

Parents of very young children usually dress them, feed them, and make decisions for them while rarely asking the child’s permission for all of the decisions made on his or her behalf. Those with Alzheimer’s are often treated this way as well—having others make most decisions for them. Being grown persons, they not only lose much of the control they once had but also acutely feel that loss.

Returning to the question of relative status and its effect on the person with Alzheimer’s, clearly making decisions for those with Alzheimer’s without asking permission and without getting consent, exerts status dominance over the person. Not surprisingly, then, individuals with Alzheimer’s withdraw from such interactions and communication.

An amazingly simple way to counteract unintended infantilization is to approach every interaction with the idea of “status” in mind. Always treat an individual living with Alzheimer’s as EQUAL to or HIGHER status than you. This means always asking permission before acting on their behalf and never making decisions for them without asking for their consent. This includes, of course, never treating them in a way that would ever be construed as disrespectful (i.e. doing something to that person like dressing them, feeding them, or putting them to bed without their permission). A person can still respectfully help someone in daily tasks, even going to the toilet, by asking permission and allowing the other to do as much as she can herself—giving control back to her (or him).

To ask permission means asking a question, and questions can be overwhelming and cause confusion in those with Alzheimer’s. However it is not questions themselves that are confusing, but rather how the questions are presented that cause the problem. While complex sentences and open-ended questions can cause confusion, avoiding questions altogether leads to removing all control from an individual with Alzheimer’s.

In the Scripted-IMPROV study and the “I’m Still Here” approach, we generally find that asking simple, often binary questions —that is, questions in which two possible answers are provided (e.g., “Do you want to wear your red shirt or your blue shirt?”) – creates a sense of control for the individual with Alzheimer’s. By making the request simple enough for the individual with Alzheimer’s to fully understand and respond, the individual maintains control. You offer the options. They make the choice.

The other type of question that enables the person responding to maintain control is one that allows them to answer with a simple yes or no response. “Let’s eat some breakfast. Would you like that?” is such a question. You first set up the goal in a very simple way, but instead of telling an adult what they have to do, you lead them into it and ask their permission so they can give a simple, “Yes” or “No”, either answer actually controlling the outcome.

When you consider anyone at all at a higher status than yourself, including a person with Alzheimer’s, you naturally do the respectful thing. Even when treating someone as equal in status, you would never talk down or do something without their permission. As we try to “help” others, we unconsciously take on the role of the person who can help, and thus place those being helped in a lower helpless status to ourselves. It is unconscious, and we never mean anything negative by it, but it greatly affects how someone with Alzheimer’s feels around you.

People living with Alzheimer’s already question how much control they have in their lives. Their failing memory can make them even more self-conscious and worried about the control they have over their lives. When we respect a person with dementia by speaking to him or her in a way that makes him/her realize that he/she is of equal or higher status, it goes a very long way. Instead of hurting their self-esteem, we boost their self-confidence. This allows us to forge a meaningful relationship in which they are given the respect that they deserve.

Evan Bass

Image: Liz West

We’ve got an appointment for December: “How you are to me”

alzheimers

I often lose myself on the Internet, browsing from one website to another, until I realise I have wasted half an hour without achieving anything. But other times one “magic click” puts me in touch with what I had hoped for and fills me with inspiration.

That is what happened to me last week, when I came across Evan Bass’ project on a crowdfunding website via which they were trying to source the funds they need to carry it out. It is a film. This is how they describe their project:

The short film centers on a couple, one living with Alzheimer’s and the other his wife who is his 24-hr caregiver. The story is a single day in their lives, at the crucial point past the early stage of the disease, when the caregiver is at the point of being overwhelmed from what she can handle solely on her own. The story follows the difficulties of communication but also highlights the pure joy that can still be found even when someone is in a later stage of the disease. From the realities of day to day living with the disease to the use of arts and earlier life experiences to create connections, the story is the roller coaster that is the average day of someone living with Alzheimer’s and for someone who is a caregiver. And yet, that is not all there is to this story, at the same time the film also has the additional layer of integrating in techniques, when utilized, that help people better connect and communicate with individuals with Alzheimer’s

Yes, this is the type of initiative so much needed in the world of Alzheimer’s and other similar dementias.  Because not only do we have to create awareness about how difficult it is to live with or look after someone with this disease, but we must go far beyond this and learn to relate to each other in different ways. By so doing we will discover the “pure pleasure” of a more honest and profound connection that can take place between two human beings.

If you have some money in your pocket and want to do something worthwhile with it, from Moving your Soul we encourage you to invest it in this wonderful idea.

How you are to me, the Project

Olga Romanillos

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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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.

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-

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