It Started in Barcelona

 

I was hoping to describe our  homecare life.   Introduce all the players.  Because our life is like a movie, a theatre.  The central characters are important .  But the minor (don´t like that word ) characters have lives,  too. Their  own theatre and movies.   Every one  with stories that could make big books.   You will meet them soon enough, in my daily blogs.

And so we are all in the same soup, as they say.  All a big family now.   Since we  - Shelly, my husband and I,  Anna – have so little family.  And all somewhere far.

We  live in Barcelona, sadly crying now.  All of Spain is poor and crying.    We are crying too, of course.  But our tears are of sadness, not of depression.

Our sadness has to do with Shelly´s illness and no cure.

About this illness.  A very rare thing.  It is called brain ataxia.  Part of Shelly´s brain – the cerebellum – is diminished.  It controls all movement.  The eyes, the mouth,   the internal  organs.  He can   barely move his right hand though his right leg is strong.  To open his eyes, his mouth  is a struggle.  He has three tubes.  And cannot be left alone for more than thirty seconds.

The worst thing is he cannot speak.  The biggest insult.  Shelly used to be a professor of linguistics  at the University of Toronto. He was always talking, lecturing to thousands.  Speaking fluently five languages.

He is also gifted.  A pianist and composer.  His head  full of music he cannot write down.

But his cognitive  part is perfect.  His memory, his health in general – fantastic.  And no pills of any kind.

Before this illness.   Everything was easy.  Too easy.  Our life in Spain an  Eldorado.  We came to Barcelona to do our work.  Pico was just a puppy then. Our days – all creativity and pleasure.  Shelly playing the piano.  His broadway musical, Looking for a Gentleman was almost finished- I was painting, sculpting,  preparing exhibitions.  My traveling show, Light of forgotten Stars ,  had just won the Canadian Government support. And we had wealth.  Money was never a topic in our thoughts.

The crash came suddenly and all at once.  Our Bouvier Pico got sick and died. My mother unexpectedly with dementia.  Heavy losses on the money front.  And Shelly started to lose balance.

How could we have thought that our easy comfort could go on forever?  Looking back, how strange and misguided was that ease.  How completely wrong.  This must be a human trait, a weakness. We cannot foresee life changing, for good or for bad.

The changes in our life were  shocking. Yet we kept going.  Despite the big stresses, discomforts and all else. We have changed to the core. Gained clarity and wisdom.   Maybe because we live so close to being and non being.  Every day, a day of searching  and  researching.  Our eyes wide open to new things.

About this blog

My reason for the blog is  to present my thoughts about homecare.  Maybe some ideas might help others.  I have been at it for almost seven years.  During that time my mother – with dementia – lived with us as well.  So in one house we had two people suffering a brain disorder.  I have witnessed much.  I soon realized we have to rethink how we deal with illness and old age.  Above all – we have to stop the cruel practice of isolation.

Sometimes my blog will be short and  sometimes long.  I have little help and little time.  Hopefully I will be able to get more help and write daily.

An important thing. I would like to make it clear I am not  and will not be  giving medical advice.   I only bring to light what works  or does not work for us.

Tip  of  the day 

Marshmallow root for mucus.  Our biggest problem is mucus.  Shelly is not able to cough it up.  I have two machines from the hospital to pull it out.  The work is emotionally hard.  My eyes and ears have to be open.  The mucus can come up at any time and Shelly could choke.

Marshmallow root is a wonderful expectorant. Powerful yet gentle. Many formulations include marshmallow root.  You can buy dry marshmallow root in an herbal store.  But be careful with the doses.  Too much will provoke constant secretions.  One cup a day- based on  1 teaspoon per cup of water – will  be fine.  An emergency doctor came up with this advice.

This is all for today.  Thank you all.  Anna

For future blogs:  www.homecarediary.net   Please feel free to pass it on.

 

 

69 Comments

Filed under Homecare

69 Responses to It Started in Barcelona

  1. This is both heart breaking and inspiring. I think it is great you are keeping a diary and look forward to more posts. I am sending warm hugs to both of you.

  2. Hilda

    Oh Anna, I am so glad you are doing us…you write so well and it gives so much insight…so much more than just a brief talk on the phone. So glad that we can do that when we can. Perhaps one day I will come to Spain with David and we will actually meet in person. I never thought of having a sister and brother in law that I would not meet in person for so many years. Bless you and Shelly and may G-D give you the strength you need to help Shelly every day and still remain sane…obviously you are both still very much in love. I have never blogged before…there are always first times for everything. Take care love and know that we are with you in spirit.

  3. John Glaser

    Great, honest, insightful beginning, Anna….makes me feel closer to both of you. Waiting for the next chapter….with much love to you and Shelly.

  4. Dear Anna and Shelley, Good morning! I just walked past your old address on c/Casp and as always wished that you were still there. A big hug to both, Barbara

  5. Mona Kolko

    Anna,
    What an inspired idea for you, to compose words to share with all of us who love you both! And given our most recent visit of a few weeks ago with you both, your words give those distant a very accurate picture of what is going on with Shelley and of your amazing caregiving!! A loving, devoted, watchful, indefatigible inhome respiratory nurse 24/7, that is exactly it!!!

    We send our love to you both, of course and will look forward to reading again when you find the time AND the energy!!!

    xo
    mona and mark

  6. elisa viana camilo de oliveira

    Hello Anna and Shelly!
    I am simply amazed how you both get along so well. I mean, I still remember Shelly’s eyes, they speak and I never picked up any misery in his glance, on the contrary, I feel he has a pure glance, the love Anna’s heart pours on him is shining back to her through his eyes.
    I was fortunate to meet you, to work with you and learn so much with you through your lives history.
    I’m impressed how busy Anna is and still she finds time to do a diary. Congratulations my friends. You are an inspiration. Your situation teaches us how one could manage better time and energy.
    I send you both lots of love and healing lights all the way from Brasil.

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