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.