Despair

Once, I had a voice and I screamed.

Now, I have no more time to myself. I may not come often.

It will depend on the help I shall, may or might get – or not.

My life is now fully busy with The Girls.

Elder Girl is unmanageable because of her pathologies and because she hates me as I ask her to do things she does not want to do. The Younger follows the example of The Elder.

We have no hours.

They claimed for breakfast at eight this morning and went back to sleep in my arms until half pas twelve. I was lucky they remembered they already had their breakfast otherwise we would have taken another one. I washed and dressed The Elder. I cooked their lunch. I made the beds while they were having lunch. I wrote the shopping list. I drank a protein liquid, and tried to e-mail the finance advisor and the Head of the Agency in order to have a planning for November. I was interrupted many times and yet nobody was ready when the Shopping Lady arrived.

No shopping for me as I had no time to wash and dress … and eat. I am feeling like collapsing every time I move.

I tried to find a book in a card box but almost all fell down on my foot that is now swollen and blue, and I have no idea where the book is but a good idea where there is a spider nest

.

I wish The Girls were elsewhere but far away from me. I wish I were in my own life with my own things, my own flat, my own friends, music, museums, conferences, exhibitions, books, studies – my life.

I wish I had new books – I mean books I would have never read: dove grey Persephones, green (or not) Viragos, yellow Grey Ladies, those wonderful although never seen Golden Age Mystery books from the British Library, the Fox books and magazines, Mrs Thirkell (those I have not…).

I even wish I had Margery Sharp, Ms Hocking, and all these undervalued women writers, and Daphne Du Maurier (for whom my foot is swollen).

And I wish I had a great, good, strong bottle of whisky or other alcool, and get drunk.

Now, I have no voice left, but despair.

 

Some news from The Little Family

It has been a long time since I posted my last words on all my blogs. I think the middle of July is the last date for “Sketches and Vignettes from la Dordogne”, when I talked about a play at the Avignon theatre festival. And it was even sooner than this for “Lights and Shades”.

I have not left off blogging. I simply had no time. I have not much time left for blogging, writing, reading, or for myself.

Elder Girl has turned 57 on the 21st of July. I know that when she was born, and later still, she was not expected to live so long. Now, people suffering from Down Syndrome have a life expectancy of an average of 60 years. When she was born, it was at best 30 years. Therefore she has surprised everybody by outliving the supposed limit of her life. Congratulations must be addressed to her parents who took care of her when she was a baby, a child and a young lady. She had breathing difficulties that were remedied to. She overcame all childish illnesses. She was made, and kept, fit. She was attended to. She was taught to drink, eat, stand upright, walk, move, read, write, count. She was given friends. She was given social relationships. She was taught a job, helping to take care of little children in a kindergarten. She has had a full life – as much as her family was able to give her and as much as she could take in.

The counterpart was all the sacrifices that were made for her. Her patents gave most of their lives to her and for her and her well-being. They both died of cancer but mostly of exhaustion from having supported her as they did. Collateral consequences were then for those who have had to support her until now.

But she has been a grand lady.

Shortly after her birthday, I was awoken by a thud on the floor of her bedroom. It had already happened that she slid from an unperfectly made bed while having a nightmare. So, I was not that surprised. However, I was not prepared for what was waiting for me. She was lying on the floor, convulsing, thrashing legs and arms, eyes rolling, scum around the mouth and tongue protruding. I briefly thought of Mother dying in my arms almost the same way, and remembered as a reflex more than as a real thought what was advised for epilepsy crises. I cannot remember how long it lasted. It seemed hours but it was certainly more a matter of minutes. Then, I put her back to bed, and rang up the doctor. 

To be qualified as epilepsy, there should be other crises. There have been none. But some days, there are small electric jolts that last a fraction of second. After each she does not remember what she was saying and doing. There have been fainting fits – one of which was vicious as she banged her head on the corner of a shelf and cut her scalp. She now forgets things: she forgets the time, she forgets what she reads, she forgets to read, she forgets the days, she forgets words. She plays endlessly with her blue pencils – blue only – and never goes anywhere without less than three or four of them in her hand. She lives according a sequence of events whatever the hour. Therefore she woke up one day at two pm, took half an hour to be ready to get up, then had breakfast, wished she had her time for hugging, took her shower, got prepared and clothed, was ready by five o’clock, did not want to listen to her radio programme as in her mind it was not the proper time, but was infinitely surprised that we had no lunch and were closing the shutters when night came. She did not understand it was dinner time, TV time and bed time. She thought she was somewhat cheated of her day.

She forgets where she is and asks to come home, hears her mother, arrived one day saying “Mother is back”, took me once for her mother’s sister (one of her aunts), does not remember where things are in the house, gets glassy eyes, falls asleep in front of TV, sleeps a lot, cannot go up some stair steps. And I might go on and on.

Getting an appointment for a cerebral scanner test and an appointment on the same day with a neurologist at the nearest hospital in Périgueux is a “tour de force”. Considering that she is not a productive person but one suffering from a mental handicap, receiving a State allowance, and being 57, our Western Liberal society is not very much interested in her. She does not produce anything and she does not consume much. What is the point of keeping her living? So tests and appointments are forever pushed back in time. There are more “important” people to see to before her.

Life at home revolves around her now and we live at her own pace. Not much time to read. No time to write or blog.

Anyway, I would be glad if you ever had experiences like mine of any advice you could give and share. Many thanks for your support and help.

July: The Little Family is back (for better or for worse)! Good news / bad news ?

Some news from The Little Family who is now firmly rooted in July, warmth, sunshine, early mornings (when possible), sometimes late nights if there is something from the summer music and theatre festivals on TV, fruits, vegetables like courgettes, aubergines, tomatoes, peaches, apricots, nectarines, soon melons…

And soon the Great House Scouring Party on the 21st of July, the day Anne-Fleur celebrates her birthday. As you know she will be 57 and cannot remember it because she sees such discrepancy “between her age and what she feels inside” – so she told me.

Add to this the Fête nationale (we never call it Bastille Day in France) on the 14th, Anne-Fleur’s saint day on the 26th (Sainte Anne), and you may imagine what an eventful month we are living!

And we already went – no, this is not true – I went through three events this week: one good, one less good, and another that does not concern us/me directly, but that I wish to mention.

***

There has been a leak for months in the loo. It was nothing important, nevertheless the noise was irritating and we were wasting water. The plumber had been ready to intervene since February but the finance administrator had given no green light for laziness, carelessness, and slackness. In the end all these were remedied and the plumber came at the beginning of the week. It took him ten minutes and a piece of black plastic to mend the leak. He has been working for us for some time now as he is the famous boiler man as well. In fact, he is the boss of a little enterprise nearby; he comes from time to time to do an odd job and overlook what his employees have been doing.

So, this job done, he stayed for a few moments, on the little terrace of the kitchen, talking to me. And then came the genuine kind word that was THE revelation for me! “Do you remember the first time I went? You were really ill then. You looked… You looked… Well, you looked badly ill. Now, you look…” Trailing voice. I get an appraising glance. “You look normal.”

YES! For a non-professional like Dr Quack or social workers or, even, the Socializing/Shopping Lady, I look normal. I told this to a friend who said that there had never been a moment that I was not normal. If I was disabled, it was by illness, stress and strain. If I still was slightly disabled, it was as a consequence of the stress and strain. But at no time I was or am mentally handicapped or disabled.

Hooray! I am normal!

***

 BUT… Why is there always a “but”?

The Socializing/Shopping Lady is not as interested as she was before by The Little Family. She thinks that we are difficult patients. We do not want to “socialize”. We spend our time in books, classical music, magazines, quiet occupations that we may lead alone, and this is definitely not normal. We should be going out more. Why don’t I create some “social link” with The Girls going shopping with them? Why don’t we go to the gym together? Why don’t we have activities outside the house together?

I told her that we had always found our happiness in reading, writing, listening to music, not in moving much, and not in doing the activities offered by the associations of The Village. That we were Townees. That we liked quiet. And that, plainly speaking, I was very, very happy to be left in perfect solitude, three hours a week, at home, while she was taking The Girls shopping. She watched me with a look of incomprehension, commiseration, and disdain. I was saying that I could be happy without The Girls. This is heretic when you are a parent or a sibling of handicapped people. They must be the Light of your Life.

Therefore, she leaves us more and more into other hands: she is on holidays, she cannot come for such or such reasons, she is not available, etc. It seems that after some unpleasant fluctuations, we have a rather permanent Stand-In Lady who started this afternoon. As I did not know who and how she would be, I decided to go shopping with The Girls to test our Substitute Lady.

She was nice to The Girls, polite with me, and helped me, although she was clearly dejected not to  decide to which supermarket we were going, not to have to push the trolley (Anne-Fleur’s task), not to make the menus (I had made them and then the shopping list accordingly), not to choose what to buy (ditto the shopping list plus the calculator to keep an eye over the spending).

Coming back, while she was driving, she asked me: “But who is the mentally handicapped person? YOU are the one, aren’t you?” I was utterly dismayed.

Boom! Live with Down Syndrome people and YOU are the mentally handicapped one! Now I have to think very, very hard at what the plumber said. And I have to use the méthode Coué: “Je suis normale, je suis normale, je suis normale…”

No, truly: I am laughing.

***

The third event happened on Thursday night.

There were semi-finals in the European Football Cup and France was playing Germany. France won the World Football Cup in 1998 with a team that was called “Black, Blanc, Beur“, which means that there were Black, of Arab origin, and White players. This had a very positive, if not lasting, effect on French society. We understood that we could be united, together, do something, and win. There was no question of skin colour or creed anymore. We were together.

Since then, there was the financial and economic crisis, the rise of the Extreme Right (Front National), the Arab Spring, DAESH, ISIS, Syria, Iraq, terrorism, attacks, racism again. Meanwhile the French team behaved like spoiled children, money came in, new generations came, and we did not even play one match in the World Cup on South Africa, on a whim. The French players went to the stadium but refused to get off the bus. We left the competition far, far before the semi-finals, at the very beginning of the competition! It has now taken years to build another team and we were not too sure of it!

Slowly, this year that France is host to the European Championship, the new French team went up, up up, match after match. Until we played Germany yesterday. It was in Marseilles, which is a difficult town with lots of problems with racism and violence. We were not too confident in a French victory and we were already congratulating ourselves that we had been so far!

And we won!

I am not much interested in sports, even less in football. The Girls do not understand the game. We watched a film against racism on another channel. When it was over, I turned to Channel 1 and we saw the French players being applauded and applauding the supporters in the stadium. I understood that we had won. It was confirmed: 2 for France and 0 for Germany. But what was beautiful was this new “Black, Blanc, Beur” team and the usually oh so racist public sharing a moment of collusion and of joy. Tomorrow – that is Saturday evening – France will play Portugal in the final. We may well lose. I hope not. It would be wonderful to live another complicity moment between the team and the country. This would soothe the rise of racism, the horror of the difference, the fear of the refugee, the idea of a Frexit. I long for another time like the one that followed the victory of 1998.

And I want to thank England. There were different teams representing the UK, England represented England. While the English were playing in Marseilles, and after, as they left the competition rather early, English supporters created and built a “synthetic” stadium in one of the multiracial, difficult, and violent suburbs of Marseilles. This will allow youths of different origins to come and play together.

The UK voted for Brexit. But who says that all British are racists? Thank you, England. Thank you, UK. This is the way we like you.

Diary (9) – Please, help!

I have Down Syndrome… What then?

 

Dear friends and readers,

Positive things first.

Your reading and writing comments or a “like” was a surprise for Dr Quack and the local Red Tape. As a consequence, a gardener has come twice and spent five hours and a half in the garden, pruning the demented wisteria, several offshoots of cherry trees, walnut trees, oak trees, making big piles of branches, and cutting part of the grass. A cleaning party is now decided for the 21 July – the whole day with three or four ladies and the gardener to move furniture and book boxes around.

Why is that the consequence of your action, will you ask? Because it is the first time they all here encounter an international public mobilization. You have a weight.

Thank you.

Thank you for your advice as well.

And where is The Little Family?

Anne-Fleur is sick at night. She is still scared to be torn from me. She stressed and strained. Every night she wakes up and is sick before she reaches the loo. She goes under the shower. I clean her. I clean the floor. I put her back to bed. I hug her. I rock her. I try to send her back to sleep, telling her that things will be well.

As to me, after asking various French organisations reputed to help handicapped persons and their families, I am back where I started.

No one has been able to tell me if “carers” existed in France. If they exist, which seems more and more dubious, do they receive a remuneration? This seems even more dubious. Should I have a “compensation” for taking care of Anne-Fleur? Who knows? No one. Each organisation tells me to ask the other. And they send me back where I started.

Meanwhile, I know now – and this was something that I was not intended to know: the person who said it was sorry to have done so -, I know that The Shopping Lady is paid €20,80 per hour to go shopping with Anne-Fleur. And she has told me she does not like it.

If I do a quick calculation, what might I earn? €20 x 8 hours (I will not count the night hours and the meal hours and part of the “being together” hours; I make it an ordinary working day). That makes €160. Shall I make a monthly estimate, taking out the weekends? Let’s say I work 20 days a month: €160 x 20 = €3.200.

This is not bad. Even with half the amount, I would be happy!

But this is a dream.

Even for my lawyer, this is no legal issue.

As to my being declared mentally handicapped, this something that is never ever talked about. Never ever mentioned. Therefore, it is never said whether Anne-Fleur would remain with me or not.

It seems that the handicapped persons like Anne-Fleur are dealt with by our society when they are children. Then, when they become legally adults (in France, when they are 18), they are declared mentally handicapped, given an allowance, put under guardianship, and, most of the time, steered towards a job, staying with their parents while these are able to take care of them. When the mentally handicapped person grows old, she quits her job and her aged parents (or these die), and she is steered again towards a paid family who will take her on board, or towards a specialised institution until his/her death. There seems to be no one from the family after the parents. Brotherly or sisterly care? A void.

What am I to do?

I will need you again. Please, show that you read this blog. Please, tweet it. Please, re-blog it. Please, put it on Facebook. Please, make it known on the social media. I do not want to lose Anne-Fleur and Anne-Fleur does not want to leave me. We want to stay “The Little Family”. So, please, SHOW YOU CARE. You may make the difference when I write to our MP, to the minister in charge of handicapped persons, and to the media.

Compared with the Brexit, with the wars, with the refugees, with elections, with democracy, with all the noise and the rush of the world, we are a wisp of straw, a mere nothing. However, the world, the countries, the nations, democracy – all this is made of wisps of straw, of mere nothings.

Please, help!

Diary (6) – The possibly mentally handicapped carer proceeds to think (and needs help in the process)

I must admit that I felt degraded and humiliated when it was suggested that I ask to be recognised as mentally handicapped. That was my first thought of hurt pride. Alright, it was misplaced: I am no genius; I have an average intelligence and understanding, no more. Nonetheless, the fact that I already feel I have been robbed of my life – I mean a normal life in a place I chose, doing things I chose, having friends, hobbies, a job, my own possessions – trivial things like my own crockery, my own books, my own records -, a financial independence – all this is difficult. I try to live it as a Christian: giving one’s life for others without restriction and with love. I can tell you I am a bad Christian because this does not come easily to me!

Therefore, being deprived of full intellectual means “for the good cause” seemed to me a little over the top.

Dr Quack left, thinking I would rush to do what he had told me. He insisted that it could be easily proven that I suffer from chronic nervous breakdown verging on melancholia. He would write it. He would convince his colleagues on the Red Tape board or panel. I would not be deprived of my civic rights and my own disposition of my money and properties. I would manage my life as I would please. I would be given help that would help The Little Family. I would be given a status of “mentally handicapped” or “mentally disabled” that entailed a small allowance. All I had to do was to see a social worker who would ask for the file to be sent from the local bureaucracy for disabled and handicapped people (the same who has declared Anne-Fleur mentally handicapped) fill the papers, give them to him, to add his certificate about my mental disease, and to send the whole to the same office in Périgueux. Then, there would be some months before I would be called before a panel of administration (read intellectually limited and bureaucratic MDs) who would corroborate the decision. Then again, some more months with social workers to determine the amount of my allowance (not much – somewhere about 200 or 300€ per month) and the material help that I would need.

Verba volant, scripta manent. Who can guarantee and sign the warrant? Who can guarantee that things will evolve like this? Can Dr Quack do it? I don’t believe so.

The material needs are in the hands of the bureaucratic psychologists and social workers. They may very well decide that being mentally handicapped does not forbid my doing the whole house cleaning, cooking and gardening. These may well be seen as therapies.

So what would I earn? A small financial allowance and a status of a mentally handicapped or mentally disabled person. The rest is a full question mark. The answer, if I adopt this solution, will be found in a year or so.

Meanwhile, we still have to live.

A blogger friend picked up another hole in the seemingly perfect fabric. And my thoughts had already jumped to it, after my pride had started to abate.

If I am declared mentally handicapped, or mentally disabled with the relevant status, I stop being the person with which The Girls can live without danger. One further step may easily be made by the Court, or by the social services, or by the administrator: The Girls would be better with “normal people”, neither handicapped nor disabled, and be entrusted to a family paid to take care of them or to a specialised institution.

One more step and I could be deemed unable to live by myself and sent to a specialised institution myself.

Doesn’t it need thought before rushing to issue that was so temptingly presented to me yesterday? Perhaps a consultation of our legal advisor in Paris, specialised in all things relevant to handicap and disability? To friends having jobs dealing with same social law? With social workers of the Foreign Office and the ministry of defence where family members worked for years and years?

Other thoughts?

I still believe that giving the carer, when he or she is family, a status is the proper solution. We do the job. Why are we not paid and helped for it?

But the job is a matter for another post.

 

Diary (5) When an able person needs to be declared handicapped herself to receive help in order to help the person who truly needs it

 

New news from The Little Family and a new turn in our life.

Another paradox of “The Red Tape”.

All the excitement around our situation has made me ill, and I called our GP earlier this afternoon. Once diagnosed with a stomach ulcer, we talked about our needs.

It is agreed that the house needs the great cleaning about which we have been talking for months. Dr Quack was even surprised that it had not already been done. Out was his prescription pad and busy did he become plying his pen along the page, requiring a cleaning firm to be sent to do the scouring from basement to attic, and then the assurance that  a cleaning lady would come two hours a week to help me do the routine tidying. Out was his cell phone to ring up the finance administrator to discuss the situation and to release the necessary funds.

I asked for a package: house and garden, as growing grass is a constant preoccupation, everywhere in the garden and, especially, close to the house: little animals of the fields and meadows may find their way within our walls.

I underlined the necessity to have a car that I might drive to go where we need when we need, and in case of emergency – on behalf of Anne-Fleur and The whole Little Family.

The finance administrator was out of reach – in a meeting or not at her desk – but Dr Quack left a message asking her to ring him back. Undaunted, he told me that he would ring her back himself if he had no news very quickly.

In France, in cases such as Anne-Fleur’s, a MD/GP reigns. His word overrules all words – in a limited way but it has a true weight.

And then came the solution to our situation.

A carer, like me, has no status in France. The only person who has a status is the handicapped person. Therefore, a carer has no help. The handicapped person gets help – such help pushing slightly aside the carer. So, in order for the carer to get help, he/she/ I must be declared handicapped.

As soon as I am declared handicapped, I may receive the help of a cleaning lady, the car can be repaired without protest, the gardener may be operational (in theory), and I may receive a small allowance (less than Anne-Fleur) but an allowance.

But I must be declared handicapped.

As I have no physical problem, the suggestion is a mental handicap.

I felt … degraded, treated without respect. But mental handicap it should be. Without having a guardian or losing my civil rights, Dr Quack hastened to say. I may be declared inapt to work because of an acute nervous breakdown verging on melancholia.

So, if you are in France, be a mentally handicapped carer and you may care about your sister suffering from Down Syndrome, with the “benefit” of a status and an allowance.

I am left to think about this but urged to make steps forward the achievement of the necessary preliminary steps in order for Doctor Quack to process as quickly as possible, for the well-being of the whole Little Family.

Now, do I sound mentally handicapped to you? Am I illogical in my wish for a proper status for carers or is The Red Tape logical?

My mind goggles and loses its marks in this maze of new concepts.

 

Diary (4) -Would please still help The Little Family? Thanks to you, we are half way (or so I hope) – Continued

After a week, an answer came from the finance administrator. It is a weird answer, embarrassed, attempting to scold me for a lack of care or a wrongly dispensed care, and at the same time relenting on most points.

First of all, a telephone must be put back, so that talks may be conducted by ringing up.

My answer is that verba volant, scripta manent. It will be nice and convenient to have a telephone at home but no conversation that might lead to litigation or even misunderstandings should be held verbally.

The car with the broken exhaust pipe should not be repaired with Anne-Fleur’s money as it does not belong to her. But given the particular circumstances, with the agreement of the Court, if the agreement is given, then the car might be mended.

My answer is that Anne-Fleur will never own a car and that she will never drive. Nonetheless, she needs a car to be driven to the “socialising” functions upon which the French bureaucracy is so keen. There also needs to be a car at home in case of emergency, or to go shopping outside the hours of the “socialising/shopping lady.” A car is useful. And, of course, it is I, and not Anne-Fleur, who shall drive it. Being without allowance myself, it seems pure common sense to use her money to repair it.

The hours with the shopping lady are not for cleaning the house. The shopping lady is someone who should help Anne-Fleur to wash every morning, (and evening?), to dress, to help her eat, to take her to the pictures, for walks, for shopping for her own food and clothes and needs, etc. She is to deal with all things intimate.

My answer is that Anne-Fleur is able to wash, to dress, to eat, and do intimate things by herself or with my help – we belong to the same family and we are close; that we are not each shopping for our respective food alone as we are a family; and that with due respect to the “socialising lady,” I am intellectually more apt to know what film Anne-Fleur may or may not see, to explain things and generally to educate and instruct her. Moreover, what is to be said of a system that PAYS A SALARY to someone to go to the pictures or the library with the disabled person, meanwhile I / the carer is unpaid to care for all other needs? Where are the State finances going? Is this a rational economic decision?

It was decided in 2014 by the Board, and the MD who examined her, that Anne-Fleur needed no one to cook her meals, clean the house and keep the garden in good shape (clean).

My answer is that Anne-Fleur is absolutely not able to do all these things, and that I must do the cooking and help in the cleaning, but not assume all the cleaning of the whole house.

It will take months to allow someone to do the house cleaning. Therefore, exceptionally, money will be allowed to do, (at last), the great spring cleaning, (summer or autumn cleaning).

As to the garden, there will be money allowed ONCE to clean it, but nothing afterwards.

My answer is that a garden grows. Grass grows. Trees grow. Shrubs grow. A gardener came unofficially a month and a half ago and we cannot not see any more where he stopped cutting the grass. As the garden is wide, it will need more than two hours to put it to rights. And in a month, the grass will have grown again. What are we to do then?

So, here we are.

Paradoxes of the French administration and bureaucracy exposed. Fortunately, all this is written. I shall transmit it to my legal advisor. And I shall be able to show it to the local Agency which provides the effective services. There is a direct correspondence between the finance administrator and the Head of the Agency, and I have seen several times that the requests made by the finance administrator are not the same as those she tells me she will make. Then there is the interpretation by the Head of the Agency that is again different. Verba volant, scripta manent.

We have come almost half the way in a week, thanks to you. Now, I shall state the situation in all its absurdity to the minister of health and the minister for disabled people who are both responsible for Anne-Fleur’s wellbeing. I shall also ask why carers like me have no status and no payment for the job they do all year round.

We still need your help, please, to show that people care; that I am not a lunatic asking for impossible things but, on the contrary, using common sense and resources as best as I can.

Please, show you care. Please, help us: click and comment, show that you are with us. Please.