Thursday 16 June 2016

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 PĂ©rigueux. 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.


  1. Yes, like a horticulture course, Camille. Especially from progressive types who might think "This would make a practical placement".

    1. I have spent the day carefully thinking. The risk of dislocating The Little Family is to great to act without caution and care. Moreover, that would be a fraud towards the State. I am not mentally handicapped, deficient, disabled. I am overtired by the job, the lack of personal life, lack of food, lack of sleep, lack of help. But I shall not ask this help on the false pretense of my being mentally disabled.
      Next step is asking advice to our lawyer and impartial social workers.

    2. I understand this.

      I wish I had not been complicit.

      Hope you will find your own box or continue to live out of the box.

    3. Adelaide, it is a difficult situation. At first sight, Dr Quack's idea seems good but, when thinking it over and putting it in the context of French administration, one sees where there may be holes.
      However, this process of thinking it through would not be as easy as it is without discussing it with you.
      I never found a box that suited me entirely. I think I belong to corners of different boxes. But that was a happy time when I belonged to them! I hope I shall find them again or others that would fit!

  2. we are all mentally disabled as their is no 'norm' really - being disabled means humbling yourself before so many people, some nice, some not so. Such fun. Do what you can, when you come, the world is not Your responsibility.

  3. I am not mentally disabled but it is true that I cannot be placed in one of their boxes - first of all because these boxes have nothing to do with me. If socialising is going shopping to the supermarket and talking to the cleaning lady about her love affairs, then, I am a misanthrope, far from this particular society. But there are other worlds to which I belonged and I will belong again.
    Still time to fight for The Little Family staying together and for me as not to become suitable to the local small boxes of "their" norm.

    1. Many of your readers are also finding old and new worlds.

      Like Aladdin: "New worlds for old".

      There is much more to socialising than shopping and cleaning and love affairs.

      Love affairs! Hope you are able to reinvent yourself intellectually.

      "to which I belonged and I will belong again".

    2. Blogging and writing are forms of socialising, of being in touch with people I would never have met. It allows discussions upon subjects, issues, topics that are more interesting than cleaning and shopping, etc.
      I dream of coming back to Paris of course, although after years away, I would not find again the same life and boxes.
      Meanwhile, I have found the possibility of reading and reviewing books on this blog - for publishers. And this is fine. One little step forward.

  4. The possible pitfall occurred to me as well - it would be a considerable risk. I think you would need some very careful and informed advice before taking this "solution". The real solution remains that of proper status, and is undoubtedly worth fighting for - in the UK, carers are allowed respite care to allow them some small life of their own. It's rarely enough, but does at least represent a realisation that carers too need the state to acknowledge what they do, and that there is a risk to the carer's mental and physical health if his or her needs are ignored (as I've just seen with my mother, unfortunately).

    Here, help in home and garden is usually paid for by the individual. The ridiculous situation that you are in would seem to be that there is money for Anne-Fleur's well-being, but you are not allowed to use it to ensure that well-being. Is there any form of patient advocacy that you could gain access to? Or pressure groups that work on behalf of families in such situations?

    Do you have no right to compensation because you would be able to be earning if you weren't a carer?

    1. You have utterly grasped the situation. No status for the carer. I am asking our legal advisor. She belongs to the Association for Disabled people and their families in Paris. But this association as others deals mostly with parents and children. Siblings may be affected psychologically, spiritually, intellectually; they seldom take care of their handicapped brother or sister when the parents are dead or too old. In this case, the handicapped person either goes to paid carers or a specialised institution. I try to find pressure groups but I have found none for adults. Parents are organised for the well being of their handicapped children, not when they become adults. Then, they seem to vanish.
      No compensation for a job that could have been: I am deemed to have chosen this life. Why should I be paid for it?
      The whole system is ridiculous.

  5. This is a difficult situation. In this country, you can be deemed mentally disabled and collect SSI disability without any further intrusions from the state, so there's not the same worry that you have. It does seem as if the bottom line might be that you are not really mentally handicapped: I do understand, however, that people have to survive. It seems as though the state should pay you a stipend in return for the caregiving you do, as they would have to pay a caregiver were you not around, but I perhaps think of an ideal world ...

    1. If I come back as far as my memories take me, I have never been an entirely happy child and I had a first breakdown when my brother died from myopathy (long term atrophy of muscles). I had a burnout and a severe depression some time after Mother's death and my being in care of The Girls. I was worn out. I am still tired but, for instance, I have no suicidal tendencies. I am under medications, which are for depression and for side effects of the medications against depression (blood pressure, stomach ulcer, heart beats, etc.). Therefore, I am sometimes more exhausted by side effects than by depression itself. And I am exhausted by the life I lead. What people understand here, in the country, is that life is the exact opposite of the life I led abroad or in Paris. My real life is online or with books. Therefore they think I am "de-socialised" and in a state verging melancholia. Anybody with two grains of instruction and culture would be so when all the conversations I have are the price of things, the love life of the "socialising" lady, the weather, the education of The Girls...
      I am sure I am not mentally handicapped or disabled. I am not certain that I am depressed. If I am I know why and it might be remedied.
      The main fact is that I cannot live the life I would normally live. And caring for The Girls is exhausting. But they are happy with THIS life.
      Should there be a carer status, things and facts would be clear. I would receive an allowance for the job, respite time, and help.
      As there is no carer status, the only solution found is to declare me mentally handicapped / disabled: then I would have a status and, perhaps, help and a small allowance. This is of course ridiculous and a fraud.
      Furthermore, would the authorities (the Court) let live persons "suffering" from Down Syndrome with someone declared mentally handicapped by depression?