EASTER WITHOUT ELIZABETH

My daughter Elizabeth is at Cygnet Hospital Stevenage under assessment and has been there several weeks.  I have not challenged this as I felt that Elizabeth needed time to adjust and the environment although not therapeutic long term seems to be peaceful whenever I have visited and staff helpful.   There is no pressure on Elizabeth to cope with since coming off the Clozapine.  Whilst Elizabeth tells me this drug has been offered to her since her arrival she is adamant she did not wish to take it and apparently she has told a friend of mine that she is grateful that I took her off it.   I had no problems in doing this until four days after stopping the final piece of the drug and she had developed a very nasty cough so I then contacted a luxury rehab centre.  The waiting around to be assessed affected Elizabeth and she was rude to an ambulance driver who then called the police and things went from bad to worse but all the time in the ambulance whilst waiting to be transported to a hospital in Margate I was determined to find somewhere else for Elizabeth so she could get nursing care and peer support as she kept saying “you don’t know how I feel”.   How can any of us know how it feels to come off these chemicals and I could not help so I went out of my way making phone call after phone call until I found somewhere else.   I then told the police it would not be necessary for Elizabeth to go to another hospital as Margate could not help and we were destined for Maidstone by this time.  They refused unfortunately to lift the section.  Elizabeth just threw a drink in frustration at being kept waiting for ages which is understandable.  Just to reflect I had little choice – when someone complains of not being able to control their tongue, the tongue going to the back of their throat  and other serious symptoms and the fact that there was no one I could turn to in my local area.  As I have said everything went smoothly until four days afterwards and she developed this awful cough.

Anyway I am pleased to tell you all Elizabeth does not have a nasty cough any more.  She looks slim and I was pleased with her appearance today.  She is happy to stay on this assessment but this is not the place for Elizabeth long term.

I have shown her some good alternatives where it is not a care home –  Elizabeth has been either put on locked wards which is entirely unnecessary and the last one at Cambian was more than one year leading to disablement.   This place at Cygnet has a gym, they have a music room and an exercise yard and garden downstairs.   There is more one to one care and I cannot fault the staff.    They have not treated me like I have been treated by local services and other previous places where Elizabeth has been sent.   I even liked the Consultant Psychiatrist and that is saying something.  He seemed to listen and respect the fact that Elizabeth did not want to be on huge quantities of drugs and he noted her behaviour was exemplary.

It is a fair drive from where I live to Stevenage and I cannot get along there during the week.   I have been to visit most days and brought with me some friends too.   The rest of the family visited yesterday so I decided to do some decorating at home and tidy up the house.  I have stripped all the wallpaper off Elizabeth’s walls and I also want to do the hallway too.  I feel that this will be nice for her assuming she will be allowed to come home again.  I am not disputing the Abilify which I see as a better drug than the Clozapine.

I have listened to Elizabeth when she said she want to “find herself”.  I agree but I hope that I can get the rest of the family together for a meeting to discuss this important thing.  I have shown Elizabeth some of the wonderful facilities but none of them are near to home.  If Elizabeth wishes to make friends and be independent I realise she needs to move and I wish to support this but at the same time I would not like her to move to a care home like the last one where according to the files she was expected to manage on just £30 a week and when she did not manage no food at the weekend.  How can anyone get well like this.  Now this is not the place I wish to see Elizabeth go to.  What I could not provide for Elizabeth was the help psychologically and only someone like a peer supporter who has been through trauma could really help her and understand.    Elizabeth was feeling well during the titration and was on hardly any of the chemical Clozapine for quite some time.  She was going out and about and not lying in bed like I have read some patients describe on social media.  Elizabeth was fit and well apart from showing signs of tardive dyskinesia and she mentioned once about loss of control of her tongue which I could not ignore but when I stopped the drug completely she developed a nasty cough and was not eating properly.    Anyway I asked the hospital to do a thorough assessment of the condition that I recognised NMS (neurological malignant syndrome).

Easter has been quite sad being without Elizabeth as like Christmas I would have cooked dinner for the family and we could have all been together but the weather has been so awful and I am thankful as I would have hated Elizabeth to miss out on the sunshine and good weather where I could have taken her to the coast.

I have written today to the Consultant Psychiatrist as I have a holiday booked and I have paid money for this but will Elizabeth be allowed to go to this –  I do hope so.

Not having Elizabeth has given me the chance to look into matters thoroughly and I am so pleased to hear that Open Dialogue will be set up in May through primary care referrals.  I have applied already for this as I am totally in favour of open dialogue.  I even thought of moving to Finland myself to find the correct care ie Open Dialogue.  I think that a friendly “community” type scheme would be best for Elizabeth as in previous care homes some have been older than her – often she has been the youngest or there have been mainly men rather than women.  I would like to see a mixed environment of young people that Elizabeth can make friends with.

I have also looked into a summer recovery camp but Elizabeth needs to agree to this and right now in hospital this is not the time to ask her but first of all is this family holiday if she is allowed to go.   I have booked farm accommodation in a peaceful therapeutic environment near to the sea.  I wish to visit a friend of mine who lives in St Ives so the first part of the holiday will be there then in Devon where I have booked accommodation on an organic farm.

First of all Elizabeth might like to come home and relax and consider all the options for respite that I  have looked into and I have made enquiries as to cost too.  Hospital must be the most expensive thing of all.

Whilst there are good facilities at this hospital what I do not like is the fact that Elizabeth cannot have her things in her room and things are kept on a tray in the kitchen.

You are thoroughly searched before going in to this hospital and you have to wear alarms and I just feel that this is only suitable for a short stay because of these types of restrictions when for the past two years Elizabeth has been fine at home – no problems.  You are bound to  have some reaction when you come off a chemical such as Clozapine –  I was expecting this!   As I told the consultant psychiatrist this behaviour is not mental illness but withdrawal symptoms:

Here is some information re: Clozapine and withdrawals:

Cholinergic rebound is a likely explanation for the mild to moderate withdrawal symptoms and is easily treated with an anti- cholinergic agent. Mesolimbic supersensitivity, as well as specific properties of clozapine, are dis- cussed as likely causes for rapid- onset psychosis.

Cholinergic Rebound and 5d Rapid Onset Psychosis …

schizophreniabulletin.oxfordjournals.org/content/22/4/591.full.pdf

BECAUSE CLOZAPINE CAN CAUSE SERIOUS BLOCKAGES OF THE BOWELS, AND YOU CANNOT HOLD DOWN FOOD IN THE END, AND GIVING UNDER THE TONGUE (SUBLINGUAL WITH THE SPRAYS) PREVENTS MALNUTRTION

 

http://www.goodtherapy.org/drugs/clozaril-clozapine.html .. not recommended for use by older adults with dementia or dementia-related issues as it may increase the risk of death. If you have or have ever had heart disease, heart failure, irregular heartbeat, stroke, liver disease, kidney disease, diabetes, glaucoma or seizures, you should talk to your doctor before you take this drug. Tell your doctor if you have ever had urinary issues or problems with your prostate. Let your doctor know if you have phenylketonuria. Orally disintegrating Clozaril tablets contain aspartame (Click for SHOCKING VIDEO), which forms phenylalanine.

Clozaril may interact with other medications or supplements, including antihistamines, antidepressants, antibiotics, antifungal drugs, vitamins, minerals, herbal products, sleeping pills, HIV medications, high blood pressure medications, and more. If you are taking other prescription drugs or supplements, you should check with your doctor or pharmacist before taking this medication.

A single tablet of Clozaril may be extremely toxic to toddlers. Confusion, involuntary muscle movement, nerve damage, coma, and respiratory arrest may occur if toddlers ingest just 50-200 mg of clozapine. 

RE CLOZAPINE WITHDRAWAL:

When someone goes off a psychiatric drug
they might have anxiety, mania, panic, insomnia,
depression and other painful effects. They can
become “psychotic” or have other symptoms from
the psychiatric drug withdrawal itself, not because
of a “disorder” or condition.

This may be the same,or even worse, than what

got called psychosis or mental disorder

before the drug was taken. Typically

people are then told this shows their illness has

come back, and that they therefore need the drug.
However, it may be the withdrawal effect from the drug
that is causing these symptoms.
These withdrawal symptoms do not necessarily
prove you need a psychiatric drug any more than
headaches after you stop drinking coffee prove you
need caffeine, or delirium after stopping alcohol
shows you need to drink alcohol. It just means
your brain has become dependent on the drug,
and has difficulty adjusting to a lower dosage off it.
Psychiatric drugs are not like insulin for a diabetic:
they are a tool or coping mechanism.
However, when you have been on psych drugs for
years, it can sometimes take years to reduce or go
off them, or you may have long term physical or
psychological dependency. Sometimes people on
these drugs develop ongoing withdrawal symptoms,
chemical brain injury, and damage. This may not
be permanent, or sometimes people live the rest
of their lives with these brain changes.

There are facilities for people to go in and withdraw from illicit drugs but I found out there is virtually nothing as regards prescribed drugs even when you are prepared to pay a lot of money.  Because of Elizabeth’s diet virtually no symptoms were seen of withdrawal throughout and Elizabeth is so happy that I helped her especially since I have been looking into not only the ingredients of these chemicals but also the ingredients of food and it is disgusting that on the supermarket shelves there is food that you think is healthy but contains no end of additives so I was cooking in coconut oil, using Himalayan rock salt and palm sugar.  I was paying special attention and not buying rubbish food.  No wonder Elizabeth felt well throughout everything.  Elizabeth is happier on the Abilify now.

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