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.

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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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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

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

I do remember

I do remember, at the beginning, a very unpleasant phase of confusion and disorientation. I remember a lot of pain, we all suffered through that phase and my father more than anyone. Because during that phase he was aware of everything and no-one understood anything. Then came the silence. The silence in our hearts, denial and, gradually, acceptance.

I remember how it changed our lives so suddenly, how I stopped going out partying till all hours so that I could be at home. I remember the moments of silence, the non-conversations, the not speaking but feeling: magical moments of company, smiles and jokes and some regret at times. And above all, how natural it all was; I remember everything was very natural, very spontaneous.

They say that the sick forget, but no. That lost gaze always smiled upon seeing me come in the door with that “pareeee ja estic aqui !” (Dad, I’m here!) but I also remember perfectly that he never forgot my name; he called me Micalet and I remain Micalet. Because my father was never more affectionate than with the illness. I remember everything good.

I remember the rituals, rituals with the pills, rituals with breakfast, other more unpleasant rituals, but everything with so much affection and patience. Because they deserve patience. Eight years of patience. A lot of patience and positivism. There is no tomorrow with this illness, there is only today and now, “que fem avui, pare?? On vols anar?” (What shall we do today dad? Where do you want to go?) and off we would go, getting into trouble; because we used to get into a lot of trouble, but good trouble. An ice cream? We would have ice cream; we’re going to see the Fallas? there we would be…

What I remember most are the trips, I remember Berlin, the walk around the Tiergarten, disorientation, chaos and calm. There would always be chaos, and then calm would always return, and at the end of the day, that calm turned into satisfaction. Always. From the quality of life we were trying to give to my father. Right up until the last moment of his life. But there was fun too, I remember the excitement with which my father would get ready for our trips. I remember the amazing helpers who would push him in a wheelchair through the airport to the departure gate. The smiles of the air hostesses. They deserve the best, always smile at them when you see them at airports. And I remember Rome and the breakfast croissants at Pascuetta, the watch he bought himself in Geneva because he wanted a Swiss watch to show off. I remember when we got lost driving in Geneva and we suddenly burst out laughing in our desperation. I remember that day when I parked the car at the Iglesia de Sitges square, I don’t know how I got there; it is family love that moves mountains, takes you wherever you want to go. The case is that I took my father to enjoy the sea breeze that day as if he were a god, because my father was a god and he deserved the best. I remember the dignity. For me, my father was the most handsome and elegant grandfather at the day centre. So much dignity despite the illness. And heads held high in the street, even if we were looked down upon, and we would hold them so much higher if this was the case. And then there were the paellas, those wonderful paellas we used to eat in the best restaurants. And I have always thought that my father was happy at those times. And I have always thought that he conveyed and shared this happiness with us. I think illness enables you to share special moments, and that the sick pass on their wisdom. And I think that the illness really brought us together so much, it united us, and ultimately cemented an everlasting paternal love.

I remember it all, dad, I love you wherever you are and I think of you so much.

El Micalet

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

Look at me, I am here!

I will never be able to forget your look.  Having to leave you there hurt so much, I felt like every day that passed I was leaving a little piece of my heart there with you.  To go, to leave you in that place, surrounded by people with lost minds, disoriented by pain and illness,  lost in their solitude, missing the essential, the only thing that in reality could give them peace and consolation: love, only love!

I managed to decipher their cries, their shouts and their silences.  In reality all they demanded was:

“Look at me, I am here, I exist, I can’t control my body, but I am still here, I need your respect, your caress, your voice, and to be somehow listened to. We are stuck here, but we are still alive. Our memory has abandoned us, but you can still make use of yours, don’t forget about us, don’t just leave us behind as something that no longer feels, no longer exists.  We are here, we are still here, help us, help us…”

Only love can give them everything that this cruel disease of Alzheimer’s has stolen from them.

If I have learned anything during this time, it is that love has no bounds.  That as a result of this illness, by your side, my heart gradually got bigger and bigger.  I had so much to give you that it could have been no other way.

I always knew how much I loved you.  I felt as though my love for you ran through the maze of veins that cover my body, surging forwards with every beat, dilating my veins to empty itself and beat hard into my heart, returning to it again and again until it became exhausted and gave out.

My love was able to abandon the body he was trapped in, on the 1st of May of 2014, at 64 years of age, following eleven years of illness.

Today he is free, amongst us, in the universe, close to the stars.  And today it is he, with his light, who caresses and takes care of us.

Merce.

Madrid, Spain.

Your father is late today

“Hello mum”.

“Hello Darling.  Here I am, waiting for your father who is late today”.

“Don’t worry mum, he must have had a late meeting.  You know he is always longing to leave the office to get home to you. (When she hears this, Maria’s face lights up)”

“Yes, he is a very good man; when we were dating there was never a day when he didn’t come and see us when he left the office and it was a long way away too.  What a man!  (Maria has a big smile on her face)”

“But he’s late today…….I’m going to start laying the table (her expression becomes worried)”.

“Yes mum, let’s go into the dining room, I’m getting hungry”.

“You have always been such a good girl, you take after your father.  By the way, it seems that he is late today”.

“Yes, it’s strange; he must have had a late meeting.  Because he is always longing to leave the office to get home to you. (Maria’s face once again lights up, while her daughter Raquel gently takes her hand and leads her to the care home dining room)”.

It is not unusual for someone with dementia to become immersed in scenes from their past.  At those times – minutes, hours or days – it can difficult for us, their family members, to communicate with them; because even with the best intentions in the world, we think our only option is to correct our loved one’s “error” and bring them back to “reality.”  To our reality.

But, what error?  What is reality other than the present moment?  That sigh that follows on from the previous one and that never returns and never left.  And what about if we were to travel with our mother to where she is? If she has an 8 year old daughter and is impatiently awaiting her beloved to eat dinner, why can we not open our minds and meet her there?  Let us become that 8 year old girl who, with her mother, excitedly awaits the arrival of her father.  And let us enjoy the brilliance and wonder on Maria’s face when she realises how much her husband loves her.

Susana García

Moving your Soul

¨Chisgaravís¨

Too many moments, too many good moments, to see that we now barely have a lost stare, disordered words and the gift of an odd smile that may come from a happy thought some small moment of lucidity has allowed her to salvage.  Chisgaravís.

That’s how it all began.  A word invented to replace the first lapses of the mind: ¨pass me the chisgaravís¨, ¨put your chisgaravís on, its cold¨… It was fun; we even used “her word”, because “obviously” it was just the absent-mindedness of the elderly.  It couldn’t be anything else.

But bit by bit, very gradually, the moment arrives when too many words are missing, the first confessions of forgetfulness: “I’ve got to give you something and I don’t know what it is “. And I would say “let us help you mum, there’s lots of us to help you”, but she would reply: “If I let you help me, it will be the end”. Since then we learnt to reply to her repeated questions, as if each time were the first time she had asked them, to help her by making her feel that it was she who was doing things, to ignore it every time she made a mistake. To check everything she did without her realising.  Because the best medicine for this disease is giving.

Now, Laila looks at us, sometimes she finds us and is gladdened, and others she doesn’t know who we are, but I am sure that every word we say, every kiss we give her, every song she listens to (music was her passion) holds a space – however small – in her mind. On our part, we will continue to celebrate every smile, every gesture of happiness when she finds us at her side.

She has always given so much… she must receive so much more.

Jeannette Cid André

A granddaughter’s pride

A Granddaughter’s Pride

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

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

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

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

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

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