In the loving memory of Edith

This is a wishful thinking comment heard from people honestly trying to find alternatives to euthanasia requests coming from people in hopeless mental sufferings.

I don't know if the people who formulate this kind of proposals are aware of the reality of mental / psychiatric and palliative care?

Can psychiatric care be greatly, immensely, completely, from scratch, improved to become a fair alternative to euthanasia requests, suicidal impulses ? According what Edith shared with me about her illness and her mutiple hospitalisations this allegation is underestimating the up to now unknown biological, neurological, hormonal, physiological, enzymatic... background, depths of mental illnesses.

I am not an expert but from what Edith went through I can share her/my experiences of psychiatric care. And I'm not convinced at all that this constitutes a viable alternative.

At her own request Edith went through psychiatric hospitalisation, for a long time, she underwent different treatments, and nevertheless, this all didn't change her mind about suicide.

As long as we don’t understand what the underlying mechanism of some psychological illnesses are it is difficult to consider what kind of treatment or hospitalization could cure the illness or at least reduce the induced insupportable psychological sufferings.

After years of treatment and hospitalization in different types of psychiatric institutions, from closed to open, and despite her commitment and her efforts to heal, Edith concluded that she suffered from an unknown and incurable illness.

Mental care was no solution anymore for her because only the most visible symptoms of her illness could be treated but not the very underlying mechanism which gave rise to them.

Palliative care was no solution anymore too because her attending physicians knew that Edith’s disease was incurable. The impression she and we had is that she in the terminal phase was of an unknown disease. She was in psychiatric palliative care for too many years...

She didn't want to suffer anymore. She wanted to put an end to those inhuman sufferings. She couldn't stand it anymore. That's why she planned her suicide. She told it to everybody. Everybody knew it. That’s why she asked help through euthanasia. 

Maybe it is time now for the medical world to admit that he has only limited knowledge about psychiatric illnesses and psychological sufferings. And that it is time now to listen to what the patient tries to explain about how he lives his illness. Instead of trying to classify the patient in an already known psychological illness -what never could be done for Edith-  it is time to consider some illnesses are unclassifiable. And to consider that the priority is not anymore to try to classify an illness well to understand how the illness function to gain power over the patients will.

Edith told me :"Some uncontrollable forces took power in me, I can’t resist, it’s horrible."

Here follows some observations Edith shared with me that can help understand some underlying logics of mental care in a psychiatric institution.

How is it happening in psychiatric institutions?

"If she does not come to us, we don't intervene" This comment shocked me. In heavy mental suffering, shattered by a heavy medication who trimmed her identity / specificity, the medical profession seemed to be waiting Edith to take initiatives to move towards her caregivers. How could she demonstrate assertivity when this was precisely what her illness and her medication had made impossible?

"It's up to her to take the initiative!” How often did those comments resonate in my mind? How is it possible to impose such requirements to someone who is physically and mentally harassed by her illness as much as by her medication and treatments? What is expected as reactions from someone who is at the end of her path, who has already found her own parade - suicide - for the refusal of her euthanasia request? I realized that this comment reflected what seemed to be expected from her throughout the path which from hospitalization was to take her towards reintegration into the society. She was not healed, she would never heal, and she knew that, and yet everyone acted as if she was on the mend. Was she not in the terminal phase of her incurable disease? Her unknown desease? And yet it was expected from her to be assertive toward her caregivers and to take her own social reinsertion dossier in hand.

She was worried because she understood that she once more had to leave the open institution where she lived. Where she felt protected, safe. She had to move to another open institution. Why? Because it is so. This was not the first time. That's the rule. She had already experienced this several times. Whenever too scary. Whenever sensitive periods with suicide risks. With suicide attempts. She was panicked by the long waiting lists to get into the other open institutions. She wanted to be euthanized because she did not want to suffer anymore and yet it was required from her to stay alive and, even stronger, to take her destiny in her own hands. What a duplicity! She was panicked. It was visible. We, her parents, saw it when she spent weekends at home. We reported it. And despite what we told the process went on. What for? Because it has always happened this way? Isn’t it really possible for the medicals to act in a more pro-active way towards patients disadvantaged at this point? Can medical facilitators really not take initiatives toward those patients? I don’t have answers to those questions. I can only hope that answers will be found in the future.

What is this disease which therapeutic arsenal provides punishments and degrading treatment? My first visit to my daughter in a closed psychiatric center gave me an indescribable shock. Even if I however have to admit that staff members (doctors, nurses, social workers ...) I had the opportunity to meet during those visits were as human as possible and showed a lot of patience, compassion and kindness toward Edith. Nevertheless, the very context of her hospitalization was something difficult to accept for the common human being. For me and for her as well. Was she not a normal human being anymore? However yes because she was entirely aware of what was happening to her and where and in what context she was hospitalized. My daughter is incarcerated have I thought. This is inhuman. She needs to get out. Gates with locks. Many. Although stunned by drugs, Edith was well aware where she was and who the other fellow sufferers were. I had very difficult to accept this context. Shouldn’t it be my duty to get here out of here I regularly asked myself? This disturbed me and up to now I continues to worry about having let this done.

To protect her against herself, she was imprisoned. She had a strict leave scheme. We were going to visit her at least once a week. We played Scrabble or Rumicub with her - which gave rise to memorable exchanges - in a visiting room where other patients evolved with their families. She told me that she had been isolated for a too "excited" behavior, for not "respecting" the regulation or for exceptionally "losing her temper" towards another patient. That she had been undergoing a body search, put under straitjacket, tied to a bed in an isolation room, was a big shock. And the word is weak. Knowing that she was staying in a special wing where she was constantly monitored is breathtaking. What I saw and what she told me reminded me too much what I had read about the carceral system. A very hard carceral system. Are there really no other methods to apply? Do mental illnesses really impose such treatments? Does one imposes it for other diseases? Are there other diseases where patients are punished? Are there no discriminations between diseases, some allowing this and others not? In the infernal cycle of acting out, internment, confinement with all its attendant degrading treatment and attacks on their dignity, "lobotomy" drug that alleviated some symptoms without curing the disease, she rose from the darkest despair to tomorrows charged with hope.

One of the last punishment which was imposed, some time before her suicide, is to be deprived of weekends with her parents. This made her suffer strongly and she called us by phone at length. I will forever remember her phone calls during this last punishment in which she reported that this imprisonment was to end and that she wouldn’t bear anymore to be isolated. She would not accept that anymore. Our daughter needed her stays at home with her parents. And we needed it too. What inhuman punishment, especially since we knew that her release was near and that this period of uncertainty was for her a period of all risks. Of all the dangers.

The horrible impression that where Edith was supposed to be protected against herself, she didn’t seem to be protected against others. In one of the multiple institutions where Edith was interned in closed regime, she seemed not protected from the onslaught of some patients who, in my opinion and in her opinion, abused her kindness, because yes, she was deeply kind. Under the doses of drugs to which she was subjected, it was no longer possible to speak of relations between consenting adults. What self-righteousness! How under such doses of medication can be expected from the patient that she demonstrates assertiveness to defend herself against other patients or to take the initiative to go to the caregivers for counsel and help. A minimum of pro-activity should be required from caregivers to protect the patient. Otherwise the risks exists of protecting the patient against her own demons and to leave her as food/prey to other patient’s demons, real moral and sexual predators! The impression I remember is that in those cases our daughter was not protected against others while she theoretically was protected against herself.

Rehabilitate loving parents in the support process. Some psychologists and psychiatrists gave the impression to miss their grieving process about the image they would nurture of a normal / normalized patient. Have they been trained in this? At the point of not being able to avoid looking for a culprit in the family circle, or even in the genealogy of it? Would they have it difficult to accept, on other bases, the “non-normality” of their patient? The non-normality of Edith could never be defined. She corresponded to no known mental illnesses. Well was she diagnosed a “highly relational sensitivity”. Just that ? The suffering of parent’s vis-a-vis the illness of their child does not need this additional suffering to be considered partly responsible for their child's illness. Such collateral actions divert attention from the disease and help the patient in no way. To the suffering associated with the disease are those added to see her parents being suspected to have been defaulting educators. What kind of killing game is this ? What suffering for loving parents and for the patient! What a waste of energy that distracts from what should have to be done to relieve the patient's suffering. Is it really necessary to go through this? Do we really have to fingerpoint culprits? Parents sometimes feel they have to show their credentials in order to be with their child. What a lot of efforts to be reintroduced into the healing process of a child. The internment and drugs act on the most visible symptoms and give the impression of underestimating other more important incurable bases of the disease. Caring parents live the suffering of their child. In their flesh. They perceive the smallest changes in their behavior. And they report it to the medical assistance. But they feel that their opinions are not really taken into account, are not considered "professional". Isn't it now high time to rehabilitate the role of parents in the support process? To abandon the guilty research, a culprit research approach to jointly accompany the patient to recovery. And if healing is not possible, then at least accompany him together for as a long time as is necessary, - not a time arbitrarily limited - to help the patient become aware of his disability, to understand it, to teach the patient how to manage his difference, how to live with.

About the palliative care, the medical profession knew that the disease from which Edith was suffering was incurable, she was terminally ill from an unknown disease for which she was in psychiatric palliative care for too many years ...

See what is written about palliative care in this site.