George: Schizophrenia, Cognitive Decline & Antipsychotics

11.11.08	George admitted on a Section 117.  George is sixty-three with a long history of schizophrenia having being diagnosed in 1969 (24yr old).  Revolving door patient although mainly inpatient.  Usual stuff (in some cases) believing he was well (if discharged) and stopped meds resulting in re-admittance.  Intractable auditory hallucinations which seem to govern his thought process.  Well educated and apparently his life fell apart after university and his first employment being his last.  Physically well (statins and senna).   No known NOK.   Stayed in his room, appears distracted, unresponsive to communication.
12.11.08.	George has remained in his room again this AM.  Does not initiate conversation but appears to welcome it, smiling and holding out his hand for you to take it.  He is a very pleasant man with a seemingly gentle disposition.  Distracted this PM, quite haunted appearance.  Will not communicate or make eye contact. OK by teatime.
18.11.08	George appears well settled.  Stays in his room most of the time but will venture into the lounge occasionally. Other residents appear to have accepted him into the fold and include him in conversation to which he enters – although still does not initiate same.   Often distracted by auditory hallucinations to which he does respond, often angrily.  Other residents seem to tolerate this, some amused by it, others ignore it and the rest by nature of experience, understand it.
09.12.08	George very well settled.   He has been designated his own chair by his circle of friends!  Goes out each morning for his newspaper accompanied by staff.  Remains fully compliant with meds.   Does not initiate conversation but readily responds.  Auditory hallucinations continue.
18.03.09	Section 117 terminated – George now free to leave the building without supervision.
21.01.11	George returned to the home (by the police) for the third time in succession after apparently getting lost.  No evidence of cognitive decline when in the home – but perhaps too subtle?  Monitor.  George now to be accompanied by staff whenever he leaves the home.
26.08.11	Cognitive decline continues.  Defecates and urinates inappropriately.  Manually evacuates bowel smearing contents in room.  Very hostile during interventions, always verbally, often physically.   After re-referral to psychiatry, depot discontinued and ‘given’ as oral meds.  Donepezil initiated.
23.02.12	Further decline evident.  Needs assistance in all aspects of daily living.  No longer able to feed himself.  No longer mobilises.   No longer speaks bar that of responding to his voices, but this being of a bark.  His psychiatrist continues to decrease and reduce (the amount of) his antipsychotics.  We don’t understand why!  Donepezil stopped.
17.10.12	Apart from a rare moment when he smiles that smile and offers his hand for the taking, George appears to exist in a permanent state of torment (hell!), he appears distracted to the point of being haunted most of the time, haunted by his voices that he no longer understands.  Every intervention becomes a battle – how horrific his life must be for him.  We have requested his GP refer him (urgently) to psychiatry; he is on the lowest dose of one med only; how can this be right?
14.11.12	Accompanied George to see his new psychiatrist  - always seem to be temporarily filling a post before they move on elsewhere  - who despite explanations refused point blank to visit him in the home.  I suppose one benefit of him not doing so allowed him to see George at his most agitated.  But benefit it wasn’t.  He (the psychiatrist) was adamant that George’s problems/behaviours’ lay with his ‘dementia’.  He has ordered that George’s remaining antipsychotic be reduced across the next fortnight then stopped.  I am horrified and dare question his judgement.  His response: We both know of the dangers associated with antipsychotics and dementia, don’t we?  WHAT ABOUT HIS SCHIZOPHRENIA?
14.11.12 -present	George’s existence must be pure hell.  Psychiatry will not have a re-think – so this is George’s lot until the day he dies.  The rare smile continues, lost as it is amidst his continuous torment as he barks in response to his voices and lashes out at all those who go near him. He has ‘dementia’ but his voices haven’t. Perhaps his psychiatrist is following the ‘wisdom’ here, but perhaps he should visit here where it is concluded that most elderly patients remain symptomatic and impaired. Perhaps I don’t know what the hell I am talking about as I am not a psychiatrist – but what I do know, what is so horribly evident to me, is that George is tormented by his voices and psychiatric services will do naught to alleviate his obvious distress.   How can this be right?

Image: Courtesy of Wikimedia Commons

Author: Gert Germeraad

Alone

He,

he

is no

longer radar identifiable,

wings clipped until he fell,

fell crashed to earth with an almighty thud,

mind all messed up, synapses spilling from his ears.  Mired in mud he

makes no attempt to free himself, for he, brain unwired, no longer comprehends, 

he has nothing left but fear and emptiness.

So he is here, waiting,

waiting for death

to rub

him

out.

Anna :o]

Tony at dVerse has us going all mathematical, writing Fibonacci, Pascal’s triangle or triangle poems.  My effort is that of a Fib.  Thanks for the inspiration Tony!

Image: courtesy of Flickr Creative Commons

Author:  Maggie McCain

Petrified

Image by Musin Yohan

Tomorrow holds bleak promise,

offering naught

but that of darker days ahead. 

Storm gathers up its tricks,

marks time.

You are the burden that I carry,

tote on heavy laden shoulder,

shoulder well leant upon. 

I am weary of it all. 

Of late I’ve wished you dead.

I shall dream of Medusa, gaze on her. 

What better than a heart as cold as stone

no longer beating to your rhythm. 

I could be no more petrified than I am.

Anna :o]

My handsome one was diagnosed with young-onset vascular dementia while in his early forties, some thirteen years ago.  He is in a sense lucky as his dementia presents as apathy and he sleeps perhaps eighteen-nineteen hours out of twenty-four.  He could not exist alone and requires prompting for most of his daily living needs.    Without prompts he would never wash, shave (he has a beard and it would be down to his knees) or change his clothing.  He would eat!

He is never unhappy and it is probable he is more content (he was a worrier) than he was prior to dementia.

His happy apathy has been a blessing in another way, in that I know he is safe when I go to work – I do not have to worry about him ‘wandering’ when I am away from home.  I need to work to pay the bills, the biggest being the mortgage.

A recent event has changed everything, an event that could have led to his death and indeed mine if I had been at home.   After much angst I have sorted the problem out, removed its potential of harm.

But I know and have known since last November that his decline is accelerating and there will come a time when he will not be safe at all if left alone.  But the need for me to work will still exist.  In today’s depressed market it is unrealistic to consider down-sizing, and if indeed this were possible, the upheaval and the ‘strangeness’ of a new home would accelerate his decline even further.

So the need to ‘put him in a home’ – a place of safety -sometime in the future, possibly the near future is the only option available.

This is something I have been aware of since not long after his diagnosis.  It is something I do not want.  How could I hurt him like that?   How could I forgive myself?

The stigma of dementia hangs heavy on all those involved.  You find out who your real friends are – it appears my husband had none…  even close family members, (handsome one’s)siblings back off and you become more isolated…

Dementia is a terminal illness, of that there is no doubt and it devastates all it touches.  I do not want my handsome one to go into a home – I would rather he die first; die before he becomes a stranger to me and I to him.

I went to sleep yesterday hoping he would be dead when I woke up.  If you are not in the same position as me, you will not understand this.  I do not want his mind to die before his body does.   It is not a selfish thing; I want him to die now while his personality still exists, I want him to die because I love him.

Entered at The Mag, Mindlovemisery and Poets United.

Sundowners

Skies blaze as shadow casts

her dusky blanket,

sun dip-sinks below horizon. 

Twilight nags at those

who would sleep forever,

jolt-jars them from their slumber,

irritates, alters perception;

Reaper glimpsed                                                                                      

they shiver in their bones.                                                                                     

Charleston Farmhouse Door (The Mag)

Under half-dead eyes

they rise like jangled puppets,

strings pulled   ease aching limbs

from chairs that confine

like waiting coffins,

zombie-like they shuffle

until agitation animates their every action.

The Sundowners, brain atrophied,

this is their time,

a time of purpose. 

Fists, voices raised;

locked in on the other side of freedom,

they clamour at the door.

Anna :o]

Late afternoon, early evening and sometimes further into the night, some of our residents stir from their lethargy, lose their contentment, become agitated, argumentative, restless and wandersome.  These are the Sundowners who for reasons not yet quite certain are disturbed by and disorientated (at) this time of day and symptoms worsen.

Giving evening/teatime meds is fraught with distractions, little Edith will be hanging onto the bar of the drugs trolley bobbing up-and-down like a jack-in-the-box, Annie will be crying her heart out as she tugs at your sleeve, wonderful kind and pleasant Bill becomes a raging hulk demanding to know why he is kept a prisoner here and so it goes on.  The drugs trolley has become a magnet compelling all Sundowners to stick to it (and you) like glue.

Some Sundowners form escape committees – my mum did in her first residential home – sweet little mother morphing into a horrendous screaming banshee inciting her fellow residents to take action and escape this strange place they found themselves in.  As it was a residential home the door was unlocked, that is until my mother became a resident there and come early evening it needed to be locked!

In my home (where I work) some residents, confusion increased, attempt to leave the building with the day staff, adamant they have finished their shift too and demand to go home.  (We got round this by staff leaving by the back door.)

My lovely, lovely people – I hate to see them distressed.  But it will pass…

MLM’s prompt at Mindlovemisery made me think and Tess’s image prompt at The Mag gave me direction and so both these good people gave me inspiration.  Thanks MLM and Tess!  Also entered at dVerse -grateful thanks to Brian and Claudia!

Image: Courtesy of Wikimedia Commons

Author/User: Fir0002

The Promise

What scares me most is that woman,

the new woman, I never guessed,

it never crossed my mind

she could be a patient, dressed

as she was in the finery of designer labels,

and the jewellery, it’s the kind you see film stars wear

and that hair, all coiffured up, y’’know

I thought she was a social worker.

It’s cruel this dementia thing,

it’s cruel here too, what they do to them,

within a month, this woman who was able

to chat and laugh was just like the rest,

degraded, empty,

joined that naked morning crocodile

of skinny shivering souls

waiting to be hosed down,

and I mean hosed down – not showered.

I suppose they just give up,

how can they treat people like that?

I couldn’t live like that, couldn’t die like that

and what hurts me is that I am part of it,

working here as I do, but I try to change things,

be kind and things, talk to them and try to make them smile,

but it terrifies me this dementia thing

and I need to ask you, plead with you,

if I should begin, well, to lose my mind –

will you tell me please, promise me you will

so I can overdose myself on insulin?

Anna :o]

The above is a bit too ‘prosee’ for me – so not quite happy with it and it is definitely work in progress – and it is probable that I will tinker with it every time I read it. Mlm’s prompt at mindlovemisery is that of fear and this is my mother’s story.  Thanks for the inspiration mlm!

In the seventies my mother worked as a ward assistant on elderly female long stay at a local psychiatric hospital.  Care then was very much of don’t care as many of the nurses still possessed the ‘warder mentality’ and the patients were mere things to amuse themselves with.  It is true that the demented ladies were lined up naked every morning for a ‘shower’ and were the daily butt of jokes and cruelty.

My mother hated it – but stayed there for the ?right ?wrong reasons.  She loved the patients and gave them her time, so much so that some were able to remember her name.  The poem is based on a conversation we had in the grounds of the hospital on the day of a fête.

I promised her there that I would tell her if she was ever ‘losing her mind’ – but when the time came I broke my promise – how can you tell your mother it is time to kill yourself?  As dementia cruelly took hold of her – sometimes I wished that I had…

I entered psychiatric nursing several years later and on the elderly wards care had improved in that there was no outright cruelty – bar that of the cruelty of neglect, the neglect of the recognition that the patients were people.

Poem also entered at Poets United Poetry Pantry – thanks Poets United!

Image:  Courtesy of Wikimedia Commons.  Author: Gert Germeraad

Frayed

Newburgh, flotsam on the beach

One ill-thought out action,

one unsteady step

sends you flying back, back, back 

into the bath

and taps

twist and snap and water fountains,

sprays you and dilutes my patience. 

Apathetic lost soul you are

I have to figure out how to get you out

as you flounder wide-pleading-eyed,

whimpering. 

Me, endurance fraying at the edges,

mind all messed up,

sick to death of all of it               and

at this very moment

I have had enough of this caring stuff

and want to drown myself in alcohol.

Anna :o]

This poem represents a true event of and the frustration of an early evening late January.  Even the most cheerful optimists have an occasional bad day and that day was one of them (for me) and oh how so much I didn’t need my handsome one to (unintentionally) dive back into the bath… writing the above proved cathartic.

And apart from the dregs of in a box of Christmas wine – there was no other alcohol in the house… C'est la vie.

(Did figure out how to rescue my handsome one (tap impressions in his back but mostly his pride injured) – wedging with quilts pillows etc. to raise him to the height of the (interior) bath, a thick sofa cushion (to raise the height of the floor) and with the kind help of a wonderful next-door neighbour yanked my main man out.)

In my workplace the subject of non-visiting relatives sometimes crops up and it is at these times I use my experience to aid my colleagues in understanding why this is.  The life of a carer of someone with dementia or profound enduring mental (or physical?) ill-health is a lonely one.  Friends and indeed close relatives gradually cease to visit…

You become increasingly isolated and in the case of dementia your soul mate/mother/father eventually becomes a stranger to you and more often than not – a stranger who is more dependant on your time (and more trying on your patience/sanity) as the days slowly pass.  You cease to love the one you loved – for they are no longer that person.

I also understand burnout as occasionally I come very near it myself – and I guess in view of this I can understand elder abuse too.  How often it may be that we are at our wits end, with no-one to turn to and although I am able to keep my frustration to muttered words – I can understand why some snap and hit out under the interminable pressure of caring.  (I understand it – but firmly believe I would never reach this point – but I could be wrong.)

And so it is for some of those with dementia who enter a care or nursing home – friends and indeed close relatives gradually cease to visit…

(I must add that I am still in love with my handsome one – but accepting one day I might not be and then will (probably) resent his very presence in my life…)

Poem entered at OpenLinkNight at dVerse  hosted by Joe Hesch – thanks Joe!

Image: courtesy of Wikimedia Commons, author Martyn Gorman

Male Elderly Long Stay

Use it or lose it

has no place here. 

What better than

to restrain (by indifference)

in chairs upholstered

in the ghosts of those long dead. 

There is no stimulation here;

they sit in regimental rows,

row on row on row,

like some old soldiers

waiting for their final orders,

or some waiting room,

waiting for a doctor

who never shows.

This reinforced apathy

brings atrophy, weakens limbs. 

A fleeting insight

brings panic,

he rises, knees buckle;

he free falls, hits terra firma

with an almighty thud.

This morning

there is only two of us,

short staffing brings many risks. 

Who knows how many

signs and symptoms missed

as we hurriedly stuff thirty men

into waiting clothes,

stack them in the waiting rows,

stuff them full of
cereals and toast. 

(Well as many as we can,

for at 8.30 – finished or not

the breakfast trolley goes.)

They need time,

there is no place for it here. 

There are the wanderers of course

who will not conform;

who wander on their eternal journey

to God knows where.

There is a new admission;

he still has fight in him.

It will not last. 

Soon he will become like them,

his remaining memories

will leach into the chairs.

They need compassion,
there is no place for it here.

As a student nurse, my first ward placement was on female elderly long stay.  I must admit I was naïve – I had this silly notion that my days would be spent sharing tea and sticky buns with confused little old ladies, enjoying their muddled conversations and listening as they reminisced about the good old days.  How wrong I was.

My first shift was that of a morning, there were two qualified staff, a care assistant and two students (including me and we supposedly supernumery) and we had forty patients to assist to rise – that is eight patients each.  We students had no idea who could weightbear, who was mobile, who was aggressive and so on, but this seemed to only bother us and we had to get on with it.

It took me well over an hour to wash and dress and seat my little ladies in their chairs – in fact they did not have their chairs – anyone was good enough.   I was totally exhausted and perspiration was dripping off my forehead.  I remember thinking ‘What the hell am I doing here?  Is this really what I want to do?’ as I realised my silly notion was indeed that – silly.

The majority of the ladies had dementia and were either admitted from the great outside or were ‘long stay’ patients who had spent much of their life in the hospital and had succumbed to dementia as they aged.  A couple were long stay patients who had not demented but reached the ripe old age of sixty and had been transferred as that is how things worked.  They were floor pacers – like caged lions bored out of their minds – both with ‘acquired’ OCD – their rituals their only means of escape from the eternal ennui of ward life.

All the ladies – bar the two floor pacers - were sat row on row on row, there was no stimulation whatsoever – no radio, no record player, no television, not a thing.  Any new admission that rose from her seat was told to sit down and soon learnt that that was her lot and after a few days did just that – sat (and died inside).

My fellow student and me attempted to converse with our patients – but lack of stimulation had had devastating effects – rarely were words spilt from their mouths – they existed in body only.

Male elderly long stay was my fifth placement and it was very much the same bar a few wanderers - not pacers, most of whom were demented and had held onto remnants of their personality.

I saw an awful thing there – it was not direct abuse but that of sheer and utter thoughtlessness, a manifestation of the warder-inmate mentality that still very much prevailed there, and it reinforced my vow to myself that once qualified I would never work in a psychiatric hospital – this vow I had made on female elderly and it is a vow I kept.

Anna :o]

Entered at Open Link Night at dVerse Poets Pub – thanks dVerse!

I Am Dementia (Three)

The Shell

The potential is there

The predisposition

Security once breached

A portal for malware.

Its object lays hidden,

But not its objective,

Its mission subjective,

Its outcome predictive. 

With one clever foot in,

A foot in the backdoor,

He enters unbidden,

Slinks in her shadows

And takes residence there.

A thief in her night

Slowly but surely,

Devoid of all pity,

He begins to dispossess her

Of all that is her.

Now fast infector,

The resident virus

Accesses systems

And deletes all the files.

Her shell is now empty,

Her memory banks vacant

Her identity stolen,  

She is neither living nor dead.

Anna :o]

This may appear a morbid post and perhaps it is, but that is not its intention.  As we are now living longer it becomes more probable that more of us will come to know dementia on a personal level, that is, a family member (including ourselves) or someone close to us as in relative, friend, colleague or neighbour.

Dementia is a terrible thing – although a lucky few sufferers remain content with their life despite their failing memory.  Family members suffer too in different ways; some (most) 'joint' friends cease to visit and eventually cease to be friends and often extended family members withdraw too and the carer is left isolated.

I really can understand this, for it is difficult, very difficult to continue to love - or remain friends with - someone who becomes a stranger to you and indeed, deal with the hurt that you are a stranger to them.

It is time, well past the time, that as a species we 'grew-up' and dealt with and removed the stigma of mental ill-health.  None of us, I repeat, none of us, will breeze through life without being touched, in one way or another by mental health 'issues.'

Let's break down the barriers now!

With thanks to Tess at  Magpie Tales for the inspiration.

Links:  I am Dementia  (One)        

           I am Dementia  (Two)  "Look At You!"

Brothers

The scallywags!
Playing soldiers,
Playing tag;
Jump in puddles;
Rugby huddles;
Sly smoke of fag
Behind bike shed.

When at school
Defy the rules.
Spotty youths now -
Heart rules head.
Brain in trousers;
Hormone led.

Trainee men now;
Stories aimed to vex.
Sibling rivalry
Based on sex
And notches on the bed.
The easy cow,
So easily laid and
The triumph
Of the virgin maiden made.

Married now
And life passes by;
Kids grow up
And you heave a sigh
As you
Cannot realise
Where the years have gone
For that baby
That once was your son,
Your child,
Is now a man
And history
Repeats itself
As he relates
His conquests.

Many years ago
A quirk of fate
Decided
To rob you of your mind;
No more shared crosswords
Of the intellectual kind;
Or shared cross words
That is sometimes
Found in partnerships;
But not ours -
It was a melding of minds.

Your brothers
Who were supportive initially
Dropped by
Now and then
No longer do
Or phone
To enquire after you.

Where are you?

This was the first Christmas
And New Year
There was not
A sound from you.

Where are you?

My God
I know how hard it is
To lose someone
Who still lives.
But I will not
And cannot forgive
Your silence!

I hope you rot in hell!

Bitter Anna :o[

I am Dementia (Part Two).

Look at You!

Look at you!
I used to love you!
You loved and guided me
Through my childhood.
Ooh! That warm embrace,
The hug of hugs
That made wrong things right!

A hug:
A mothers elastoplast on
The wounds of life.
What skills you had!
A child cherished,
Wrapped in the comfort of
Unconditional love!

You gave me
All of you -
I took, but hope to God
I gave back.
I think I did.
I hope I did!

The pinny!
The cooking lessons!
Dusty flour on
My face (my nose!) and scuffed on
Everywhere imaginable!
That was life then
And girls were girls!

But life moves on
And things change.
You have changed
And no longer
Offer me hugs.

You are an empty shell!

I do not know you!
Who are you?
You have taken up residence
In my mothers body
But I don't know who
You are!

I hate you
For taking her away from me!
I hate you
For saying
"Look!, this is who she was
But I own her now!"
As you thrust
That empty shell
Of (who was) my mother
In my face!

Look at you!
You were my mother.
I idolised you!
But not now!
I no longer love you
And wish you would go
Away!

It is
So difficult
To gaze on someone
You loved so unconditionally
Who still lives
But no longer
Exists.

Anna