Reunion

A few days ago I received an email from a very dear friend and her words moved me so much, that I didn’t want them to be left in my email intray. That is why I asked her permission to publish an extract of the email and a photograph of her with her aunt, and she generously agreed.

Thank you for sharing your experience, dear Pilar.

Olga

“I need to give you, and everyone involved in one way or another with making Moving Your Soul a reality, my most heartfelt thanks. Now it is I who is experiencing this as my aunt Marta, with whom I have been very close, is now in a residential home since her Alzheimer’s advanced to a more severe phase.

I hadn’t seen her for more than 15 years, for we lived far apart and I only had the opportunity to speak with her by telephone.

Since the last time we spoke her condition has worsened significantly and although she has a very caring family from whom she receives much love, unfortunately she is now in a phase in which she needs residential care. So I went to see her one sunny spring afternoon and I found her in bed, gripping on to the bed frame as if scared of falling off.

I have to thank you and Moving your Soul for the gift of a perspective that helped me to contain the pain and anger of seeing my beloved aunt that way. From the first moment, I was able to look into her eyes, embrace her and be with her, with the same aunt Marta of always. I didn’t ask her if she knew who I was, I simply said, “My beautiful Auntie, I’m Pili, Maria Cristina’s daughter, I have missed you so much and I came to see you.” Her eyes lit up for an instant and she repeated “auntie” with a crooked and cadaverous smile that nonetheless was her usual smile too.

I gave her lots of kisses and, given how coquettish she had always been, I filled her with compliments while tears rolled down my cheeks.

I spoke with her, gave her sips of water, put cream on her face, stroked her hair and I would love to be able to do this every day, every day… because I imagine her there, so many moments all alone, and my heart breaks…

She also kissed me a lot. She looked haggard, bone-thin, like a small bird (I then understood what you had told me so many times about your mother) – so defenceless and vulnerable. I said to her “you’re like a little bird, are you hoping to fly away?” And she laughed, repeating little bird a few times, and managed to say “how funny” just before grimacing in pain as if for an instant she became aware of her own suffering. My caresses were received with a baby’s way of trusting. “I know, auntie, I know…” I said softly as I held her while she cried without tears for a few moments, and then she calmed down.

I held the hand that was clinging on to the bedrail with such determination that her knuckles had turned white, as if all blood was drained out. I said to her “you can let go auntie, I’ve got you, that’s it, I’ve got you…” she gradually let go her hand while I stroked her dry skin, like paper… I put cream on her hands, and caressed her until she fell asleep.

I have much to thank my aunt for and I did so then and there, looking into her eyes and with the profound sadness of knowing I was also saying goodbye to another aunt who at the same time was there in front of me.

I don’t know if I would have been able to get through this experience with so much tenderness if Moving Your Soul had not already moved my own soul prior to this encounter. In fact, I am convinced that the pain, anger and impact of seeing my aunt like that would have undone me.

THANK YOU, my friend.

THANK YOU, Moving your Soul.”

Pilar Rueda

I will always be your Chiquitita

She is a real role model, she has had Alzheimer’s for 13 years and is still happy. She smiles, sings and, up until a short while ago, she was also dancing! :) She loves whoever is by her side at any given moment. She doesn’t know who I am but just by being close to her I can feel that she cares for me because she is all love.

Granny, yet again, you have shown me that it’s not so important who I think I may be but who I truly am. It’s not so important where I come from, but where I am, what I do, what I feel and what I convey right now, in this moment.

You, so genuine, so funny, so unique and so special, you know how to value each and every second of your life, you are love itself.

Even though we cannot choose the circumstances we must face, we can certainly decide how we face them!

No matter how old I become, I will always be your Chiquitita… “Chiquitita you know very well that sorrows will come and go and disappear, you will dance again and be as happy as the flowers in bloom. “

María Gilabert Hernando, founder of BeValue

My princess

‘From the forgetfulness of the ever-narrowing castle of your life, illuminated by thousands of light bulbs that are gradually burning out, you are not aware that the lights are dimming and you are getting used to creeping darkness, without recalling that the walls of your castle were once blazing with light.

My princess, you forgot the keys to your home, your fiefdom, and the names of your people, you forgot your world, you forgot about love and about your very self too.

You are like an ever smaller child who needs more and more attention, more care and more love, which is why you are not my queen but my princess. You struggle amongst the fog of your mind in the chaos of your memory, it is a never-ending sentence for a crime you did not commit.

Alzheimer’s is a contradictory ailment, difficult to encapsulate. It is absence, grief, solitude and emptiness, but also the impotence and rage that I feel in having you at my side but not being able to thank you for the peace and serenity I feel everyday when I visit you and sit by your side.

I just want to tell you today and as part of this tribute, that although because of your illness you won’t know it, you won’t remember it, I love you my princess.’

Javier Falque

Validation groups for dementia patients, carers and families

Validation is a method of communicating with and helping disoriented very old people. It is a practical way of working that helps reduce stress, enhance dignity and increase happiness. Validation is built on an empathetic attitude and a holistic view of individuals.

Javier is social worker with a lot of experience in different areas, formed in Reminiscence, expert in individual Validation and group Validation. Currently, he is training as Trainer of Validation in Reims (France).

More info about it:

https://vfvalidation.org/

http://vfvalidation.fr/journees-detude/journee-detude-naomi-feil-et-vicki-de-klerk-rubin-17032017-paris/

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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They have given me incredible joy

We are interviewing Aniana Gutiérrez, two days prior to her retirement and after 17 years of working as a cook at the Sanitas Puerta de Hierro care home. Such has been her dedication and passion for her work that in 2013 she won an award for best chef of the group. Throughout these years Ani, as everyone at the home calls her, has had direct contact with the elderly residents in the home on a daily basis at mealtimes, and she tells us emotionally how “they have given me incredible joy.”

Olga: You were telling me that when you came to work here it was at a special time in your life, is that right Ani?

Ani: Yes. My husband had just passed away, at the age of 56… and I went through a very tough time with my family. So when I started working here, no-one noticed anything. I would look after them perfectly, but when I walked out the door I would start crying. But they, the elderly residents, gave me great joy when I was here.

Olga: And when you say that, you place your hand here, over your heart.

Ani: Yes, yes… It’s just that I would go home with an enormous sense of satisfaction.

Olga: I have always noticed you have a very special way with them, of making an effort to make sure you feed them well. 

Ani: From the first to the very last day. I only have two days left now, and on my last day here I will work the same as I did on my very first day.

Olga: And, you like to get out of the kitchen, don’t you?

Ani: Yes, I am with them at mealtimes when we serve the food. I like to feel how they look at me. I remember one particular resident who, as soon as he saw me, his eyes would light up. He used to call me “the mayoress” and I saw he really loved me.

And I think my character is very much like that… They are very special to me and it comes from deep within. I don’t do it out of a sense of duty, but because it comes from the heart. Each one of them is a certain way, each one of them is special to me. When we have parties I dance with them and before the parties I used to check magazines, Internet… to come up with new ideas.

Olga: Any other special anecdote you recall?

Ani: There is another resident who likes to play the piano, who is very special too. Whenever he really likes a particular meal, his eyes fill with tears and he says to me: “Nani, I bet you made it, didn’t you? and he just gazes at me.

Olga: Now you are leaving, and you leave a legacy behind you, a way of doing things. What advice would you give the cooks and chefs in this and other care homes?

Ani: I have taught the two people here who are going to continue working in the kitchen and I’ve shown them lots of things. I have taught them how to cook with awareness, to do things properly. Good flavour, good texture, nothing frozen, everything fresh…. Because if you add frozen things into a soup, it ends up like water, and they don’t like that flavour. Not them or anyone. The residents are first class, not second class citizens!!

Olga: Exactly, and what’s more one of the last remaining pleasures they have left is that of eating.

Ani: Yes, it’s the sensation of taste. I remember your mother when she would have the asparagus she so loved. The faces she would make…

Olga: Because you also know everyone’s favourite meals. Like in the case of my mother. How do you get to know so many people so well like that?

Ani: It’s just that if you are here every day you end up knowing what everyone likes. That’s why I think it’s best that the staff don’t change too much, so they can get to know each resident well. It is important for the carers to know how much each of them eat, how they like it, what dishes they prefer… There are new residents here now and they are just starting to eat more, when the first few days they didn’t really want to eat at all, and family members notice it. And that gives me a huge sense of satisfaction.

Olga: And what other advice would you give? Because you mentioned cooking with a conscience, getting to know each of the residents… What else?

Ani: Everything must include its oil, its salt, its bits and pieces… Even though you might think they don’t notice if it tastes good or bad, they absolutely notice!

Olga: Because you really care about them, Ani. What could care homes be like if all staff treated residents like you do, if each resident were to be treated like someone unique and special!

Ani: The thing is we need to get people who enjoy it, who feel passionate about it. I am going away with a very satisfied feeling, very happy.

Olga: And we will be left a little sad, because we will miss you. Farewell, dear Ani!

Portraying my mother

As a little girl I used to love looking at photos of my mum when she was younger, those black and white photos on thick paper. They showed me the image of a very different woman to the one I know: very coquettish, she would often go to the hairdressers and would never go out without her makeup. She would also sometimes go and “get her portrait done” as she used to call it, in a studio, something they used to do back then so similar to what we now do with our mobiles, and of course she always looked radiant and smiling in those family photos. I think if my mum had of been born in these current times, she would undoubtedly update her social media daily with countless selfies…

Due to a very serious operation, three years prior to my birth, and which affected her optic nerve, she began to always wear dark glasses. Even though she no longer showed the glamour of her old photos, when I was little I thought my mum was beautiful, that detail of being blind in one eye just didn’t exist for me.

The whims of genetics meant that I inherited neither her coquettishness or her photogenicity. The thing is, I have never liked posing and she, for as long as I have known her, was always loathe to be photographed without her glasses.

During these years of illness, seeing her quick deterioration, it felt like a betrayal of her in the beginning to take her photo without her consent, imagining she would say something like “Don’t take a picture of my lazy eye!” which is how she referred to her eye problem, and if any self-awareness remained, how much tougher it would be to see herself like that, increasingly less the mistress of her own body, than enduring the loss of an eye.

And neither did I want to take photos of her like that, it made me cross and upset me to see her and I wanted to always remember her the way she was, vital, happy, loving, strong… but for some reason the worse she got, the tougher it became to remember how she used to be when she was well. Perhaps for some strange reason it felt like a betrayal to remember how she used to be, above all to stop myself from thinking that the memory disease was starting to affect me too.

The last few months she was at home and the first few in the care home, were the most painful for me throughout the entire process of her illness, I nervously took my mobile out to take a photo of her, despite feeling I was doing something wrong I wanted to have a record of those moments, because perhaps in the future I would want to look back on it. However painful, ugly or sad it seemed to me, I thought I would regret it in the future if I didn’t do it.

It is not a case of being merciless about the disease, about the degradation of the body, but of capturing a little of that person’s soul. Nor am I taking photos of her all the time now, but just now and then, when we are together, simply sitting side by side, enjoying the lovely summer weather, or sheltering from the winter’s cold, I want a reminder of that moment. I suppose taking photos of her, like telling her jokes or telling her the things that happen to me like I used to, even though she can’t answer me, helps to me to handle or to normalize the situation, and accept her disease, not reacting with anger has helped me recently to start daydreaming about her as she used to be some years back, not completely healthy, but certainly independent.

‘I suppose taking photos of her helps to me to handle or to normalize the situation, and accept her disease’

My mother’s disease is a process, accelerated in some ways, eternal in others, but it is the last road we will travel together. And that is why I try to make the very most of it as much as I can.

Rocío Chacón, Spain

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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.

-

Olga Romanillos

Reminiscence in Alzheimer’s and other kinds of dementia

reminiscence in dementia or Alzheimers

In Moving Your Soul we have started a podcast in Spanish, and our third episode is an interview about Reminiscence in dementia. Our special guest is Raül Vilar. Here you can find some links to know more about it:

European Reminiscence Network: http://www.europeanreminiscencenetwork.org/

Pam Schweitzer: http://www.pamschweitzer.com/international.html

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