Granny, poem by Nayeli to her grandmother with Alzheimer’s

We just received from Berlin this testament to the bond between grandmother and granddaughter. Nayeli, a 17 year-old granddaughter, is trying to find a way to be with her grandmother Blanca Nieves, and from that search comes a poem. It is not the first poem we have received from family members of people with Alzheimer’s. They have difficulty expressing themselves in conventional language and, as a result, this poetic form allows them to open up their hearts to a special experience: to a love and to a form of communication that breaks through barriers…

Granny,

It’s difficult to see you,

It’s uncomfortable to see how you suffer.

I want to look the other way but it wouldn’t be fair,

You don’t have that option.

You cannot get away from this.

Your fragility makes me feel fragile

And I’m sorry I cannot help you

It hurts my heart.

Our lives are so different.

A year without seeing you,

I explored the world.

You were here.

But today our tears unite us.

Your illness.

For you, impossible to remember.

For us, impossible to make new memories.

Here we are,

Looking at each other,

both of us asking

who is she?

You don’t recognise me

I don’t recognise you.

An hour by your side and it all becomes clear

It doesn’t matter if you don’t understand me.

The important thing is for me to share.

It doesn’t matter that I never knew

the woman you were 20 years ago,

because I carry her within me.

Your songs, I sing them

your son, he is by my side

Your love, I can feel it.

Daughters and mothers

When we travel, something changes inside of us, if we embrace the experience. Something similar happens with Alzheimer’s: It is a one-way journey, with no way back, whether we want one or not, and it shakes us to our core. To begin with we refuse to accept everything it involves, above all the goodbyes that come with it. And we are also scared of what is to come.

This ebook is a collection of the real life stories of daughters and how they experienced the dementia of their mothers. Each one of these testimonials in reality represents a stage that many people go through on this journey of learning to live with dementia. From pain to happiness, passing through doubt, nostalgia and fear.

Some of the protagonists of these testimonials have now reached the end of their journey, and others continue along it. If you are in the middle of yours, these stories may throw some light upon your own path.

Olga Romanillos & Beatriz Ariza

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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Video with the Learnings from Alzheimer’s

At Moving Your Soul we have been collecting for years stories from great people who have discovered how to find in Alzheimer’s, beyond the pain and sadness, a reason for joy, growth and learning in their own lives. A few weeks ago we decided to ask a new question through the social media:

What have you learnt from Alzheimer’s?

In this video you can see the inspiring responses we have received, selected and translated with all our best intention and gratitude. Lots of people from different parts of the world have shared in few words a hopeful message from dementia/Alzheimer’s. Thank you everyone for participating!

Enjoy the video and if you know someone who can appreciate it, please share!!

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

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

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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

Moonlight Sonata

I remember his hands at the piano, where he could be for hours… He had a serious face, as he was in the middle of something more important than him… His expression showed me the great love that he had for Music. He loved it almost as much as the love he felt about her dear wife and family… He met her when they were young, and I always loved when he told me stories about those times when they were in love… That was my grandpa, a fascinating person that I’ll always have in my heart, and the person that I can feel when I visit him at the care home.

Even though we don’t have that complicity any more, now I feel that I can learn more from him. I think that now he is wiser than when he was a lawyer. What I most enjoy and admire is the way he enjoys little things. For example, when we are in the garden, he looks at a tree and he says “how beautiful this tree is ”, and he can say it a lot of times without getting tired, nor him neither me. He’s got that capacity of surprise which I admire, as a philosopher, and the innate curiosity that sometimes I forget to practice.

Now he can’t play the Moonlight in the piano anymore. However, if I play that song in my Ipod, he feels happy and enjoys it very much. I like his great sense of humor when he says: “this song sounds great, I don’t know whether it’s mine or Bethoven’s”. And he smiles. He always preferred imagination to memory…

Nowadays his favourite songs are not the best classical themes any more… Today he’d rather sing a popular song than anything. We sing together in the care home, and in a momment, a lot of persons there join us. I don’t know whether I want to smile or to cry, but anyway what I feel is happiness, some kind of joy that is difficult to find in other moments of my daily life.

Dear Grandpa, you’re an oasis in my life… I feel lucky to enjoy your existence. But there are moments when I stay alone, crying, listening to the Moonlight Sonata of Bethoven… And I miss you, I miss it… But I also hold it in my heart, everything that you’ve given to us all your life.

Beatriz Ariza

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

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

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