Sunday, 22 May 2016

Diary (1)

This is a short entry of diary as caregiver to a person with Down Syndrome


What a lovely flower is a poppy!
The most common flower is scarlet red. But some are more orangy. Others are are white. Others are mauve. They are all papery and delicate. As soon as the stem is cut, the petals wither and die. When we were children, Anne-Fleur and I were taught how to make very ephemeral dolls with them. The black heart was the head, and the petals, turned down along the bruised stem, were knotted with a silk black thread to make a skirt. Dancers ready for the ball  among the green meadow.
When I got oolder, I read about opium in Victorian novels, as well as morphin, and all those substances that Victorians were taking to soothe their nerves and their relatives' nerves - among them women and children who tended to be rebellious.
Later again, we had a gardener aid who came from Laos. He was part of a Roman Catholic programme to help Laotian people who wanted to flee from the regime and leave their plots of lands. When Mr Yang discovered our ornemental poppies, he smiled. I was giving him lessons in French and he was teaching me his language - not the easiest of experience but a beautiful challenge where I don't know who learnt most! 
So, seeing our ornamental poppies in their red splendour, he smiled. "I remember them", he said. "I went away from my country because of them. Do you use them?". I must have looked at him idiotically for five or ten seconds. Then I remembered photographs taken by Father and the wide, wide fields of beautiful deadly flowers. "No", I said, "we do not use them. They are only there because they are lovely". Mr Yang smiled again. "White people will pay a lot for them. Of course, they not pay the people like me who make them grow. We are still your slaves for this. Do you want to know..." He took his knife from one of his trousers' pockets, deftly made three or four incisions, and a thick whitish liquid came out. "This is the blood of the plant. We used to smoke it. But the white men pay for whole fields, make powder of it, and then it is for you to tell me. I know there are good drugs and bad drugs, you know."
When Ane-Fleur's family members were suffering too much, they were given opiates to lessen their pains. Were there good drugs? There were derivatives of the drug because of which Mr Yang had to flee his countries.
It has now been three days that I am suffering from acute migraine. It comes with stress. Stress is the first thing I feel when I open my eyes in the morning - even before I open my eyes.
I know that my fight to have a thorough house cleaning is lost. I know that there is no hope for a clean garden. I know that the Agency who sends the Shopping Lady is now trying to reduce the number of hours from three to two a week. I know that I have no news from the Anne-Fleur's financial administrator: this means that the car shall have none of the repairs it needs. Therefore we shall depend on the hours that we are allowed for the Shopping Lady to go out of the house and garden. We shall need her for the basic groceries, meat, fish, bread, vegetable and fruit, etc. We shall depend on her as well to buy new clothes for Anne-Fleur. But with two hours a week she cannot do all the shopping and the cleaning of the house. We need more money from her allowance (and this money does exist) to pay more hours that should be dedicated to Anne-Fleur only. Which means, there is no money for me to eat or to be clothed. This has been calculated for ONE person only. My basic needs are not covered.
It is as if we were punished, Anne-Fleur to be disabled, and I for doing nothing but be her caregiver. As we are not useful to the society, we are no human beings anymore, but reduced to the amount of money we cost this society. And even if there is enough money to make us live normally, it is denied to us. I, because I am not disabled and have no right to money even as caregiver. Anne-Fleur, because I might squander away her money in having the car repaired, her hair cut, her body fed and clothed, her brain nourished and cultivated. Meanwhile, I am told again and again that she does not "socialize" enough.
My own allowance (not as a caregiver, as a human being) has made no progress since January. And I have been written regularly every two weeks to check the progress.
There has been no answer from any administration.
Stress. Migraine. I need a dark place where to rest. But Anne-Fleur is scared by my not being available. So, I take the drugs that Dr Quack has prescribed for this case. Parcetamol plus codeine. This delivers some kind of opiate that drugs me and makes me sleep. This is to be added to the regular treatment of anti-depressors, anxiolytics, tranquillizers, blood pressure diminishings, ulcer painkillings, breathing help, heart's ease, etc. 
On Friday, I fainted thrice and fell down, lost consciousness. Anne-Fleur did not see anything and was waiting for her meal. On Saturday, I fainted in bed. I could not keep sitting. I had to sleep as much as I could and try to stand up, walk, and make my duties during the few moments of clearness I could master. Today, I still rely on papaver somniferum. If I were to talk of this situation, the immediate action would be to take Anne-Fleur from me. No search would be made of the roots of the malaise. And no money would be allowed to help the situation unblock. Shame on me and long live the French administration!
Lovely papaver somniferum!

papaver somniferum1

1 comment:

  1. Sixtine,
    I hope you can find some relief from this situation. Certainly, it would seem as if some better resources would help and at relatively little cost to the French govt for all the good work you do.