Jim couldn’t work a damn thing out. Bar that he was lying in a strange bed, he understood not a thing. He was overwhelmed by panic, his heart thumping away in his chest he pulled himself up and sat on the side of the bed. Christ, he was so damn stiff, his bones ached as how he imagined an old mans would. ‘Jesus Christ, my hands!’ He raised them up to just below eye level and turned them round slowly not believing what he saw and horror struck at the heart of him. They were not his hands! They were old mans hands – just like his granddads, all wrinkled with parchment thin skin and littered with age spots. His terror increased.
He was distracted by a noise and turned his head and saw two large black dogs (rottweilers, he thought) pacing and snarling underneath the curtained window. They stopped and returned his gaze, (oh what penetrating evil eyes they have) lips curled as they bared their teeth, saliva drooling from their ugly mouths as they moved menacingly towards him. “HELP!” he screamed at the top of this voice, “HELP ME!”
Two kids, teenagers maybe, entered and he thought that perhaps he should recognise them, but he didn’t. A new kind of panic took over as he desperately attempted to complete the jigsaw in his mind. ‘Are they my kids? Do I have kids? I can’t remember! I can’t remember! I’m sure I do! I don’t know! I don’t know!’
“How can we help you Jim?” the girl asked. He didn’t know what she was talking about. ‘She called me Jim. Why would she call me Jim? Who is she? Should I know her? I’m not Jim to youngsters – I’m Mr Conway!’ “Jim, are you alright?” Her familiarity enraged and frightened him and he punched her in the stomach. “Jim, I’m just trying to help you!” He attempted to punch her again – but she moved away as the young lad held his arm saying “No Jim, No!” “We’ll come back in a few minutes and help you get dressed.”
It seemed to Jim that time had passed so quickly that they had returned before they had even left. “C’mon Jim, we’ll help you get ready,” the girl said kindly as she sat on the bed beside him and began to unbutton his pyjama top. “I can do it myself!” he seethed as he angrily elbowed her away. “Okay Jim. Okay.” ‘My damn fingers won’t work; I can’t undo my own damn pyjama buttons! Oh my God what is wrong with me?’ He was so damned angry and so damned upset that he could feel that great big lump in his throat and tears welled in his eyes, he hit, kicked and punched as he attempted to cope with the emotions that had welled up inside of him
“We’ll have to change him,” he heard the young lad say; “We can’t leave him like that.” “I know,” the girl said. All of a sudden there were three kids in his room and they stood him up saying stuff that he wasn’t even listening to any more as he was just trying to make sense of everything. Next thing he knew they were pulling his pyjama bottoms down. ‘Oh Dear God, kids are pulling my pants down!’ He tried to defend himself as best as he could, kicking, punching, biting, elbowing as he screeched “Get off me you f*****g c***s!”
He was suddenly aware of the familiar smell of faeces and looked down. ‘Oh my God, I’m wearing a bloody nappy and I’ve shit myself, I’ve bloody shit myself! He was mortified with embarrassment and kicked and punched and elbowed the young kids, hoping to God they would go away as he was so deeply ashamed….
Jim couldn’t work a damn thing out. Bar that he was sitting (with his breakfast in front of him) at a strange table in a strange room filled with strange people, he understood not a thing. He was overwhelmed by panic, his heart thumping away in his chest and he was certain, yes quite certain, that he should be at work now.
Next to him sat a very old lady, God she was making a noise eating and food was spilling out of her mouth. “Will you SHUT UP?” Jim said angrily. She ignored him. “Will you SHUT UP!” he repeated. She ignored him. He stood up and angrily brought his cup down on the crown of her head. She shut up.
He noticed two dogs (rottweilers, he thought) glaring at him from across the room. They stood up and moved towards him. “HELP!” he screamed, “HELP ME!”
There is no way no way on earth that I can say with certainty that this is the thought process of those with dementia who are suffering from psychosis. It is merely an observation of those that do and I do so try to understand. I often think (when I do my hourly checks at work) that sleep is the only time that these unfortunate souls are at peace.
I like to think I do understand. Decades ago I had a viral infection that attacked my brain. I had short term memory problems and often couldn’t complete a sentence as I had forgotten what I was talking about, I had visual hallucinations, altered taste (everything tasted of either cardboard or soap – although I have never ate either!), double vision resulting in difficulties in spatial awareness and I often used to (literally) walk round in circles, murderous intent and many other symptoms.
However I did have one thing that those with dementia do not, and that is insight. I suppose I must be quite weird as I found the whole thing fascinating, that is, apart from the murderous intent which quite concerned me.
It is said that prescribing antipsychotics to those with dementia that are psychotic reduces life span and that they are over prescribed and reductions in prescribing should be made. It is now proposed that GPs who prescribe antipsychotics without permission from PCTs should be jailed, yes jailed!
I know that some GPs think that nursing home staff is lazy in that they don’t one-to-one folk like Jim as if somehow this intervention could miraculously cure psychosis (as Jim in his highly demented state would suddenly be capable of reason). Tell me docs – does this intervention work with younger folk who are psychotic – or are they ‘sectioned’ in their best interests and prescribed antipsychotics?
Please come and work a day in our home and show us how it is done or spend a day with a family who are trying to cope with their elderly demented psychotic relative in the community. Please show us how!
Fortunately most GPs don’t think like this and understand Jims needs, yet with the ‘climate’ being as it is will not, are afraid to prescribe antipsychotics and instead refer to Psychiatric Services – which may take weeks. Jim if he was younger would be ‘sectioned’ and receive immediate care and relief of his symptoms. So Jim is neglected and abused by the system as he is old.
There is a current ‘rumour’ going round that pain relief is just as effective in calming poor demented, psychotic Jims! As Jim takes 1G of Paracetamol q.d.s. (plus other analgesia) I think he would like to see the evidence! I would like to see the evidence!
One of the shining lights to me in GP land is Copperfield and I have sung his praise before! (Copperfield is in fact two GPs.) Read him here and here.
I know I have ranted on folks and I am sorry, but as I said in my previous post on this matter – I would rather (if demented and psychotic) prefer to live for five years with a certain quality to my life than live seven years of sheer hell. I love my residents and it screws me up to see them suffering.
What say you?
Anna :o]
PS Apologies for the tiny writing in second part - didn't show like this until published. Failed experiment! (Also don't know how to place tabs on this exciting new dashboard!)
PS Apologies for the tiny writing in second part - didn't show like this until published. Failed experiment! (Also don't know how to place tabs on this exciting new dashboard!)
14 comments:
Hello Anna
I've just read your blog (stating the obvious here) and the links. Interesting that Burstow also follows up with "...and punish doctors if a target of reducing the number of elderly care home residents and dementia patients prescribed antipsychotics from 180,000 to 60,000 is not met". The verb 'to meet' and the noun 'the target' are significant here. The 'dying prematurely' and 'deprivation of liberty' in Burstow's argument are non-starters.
I truly hope that if I ever need such care myself that my care home will be like yours.
Rant on, please!
Anna, my uncle is currently in a state similar to "Jim's", and all I can imagine is that he drifts form one dream/nightmare to another. Sometimes he seems content; at others, frightened, angry, violent or whatever. The most heartbreaking thing is that we will never know what goes on in his head; merely try to keep up with it. A very good post.
It must be very frightening for the dementia-sufferer, as well as difficult for the carers. Daughter is working on an elderly ward at the moment. Am going to email her your post.
Anyone who has experienced severe mental illness themselves or in a loved one knows the torment well. Your description of how it must be experienced is very evocative.
I share your view about psychotropic medication in this and other circumstances. It is not a chemical cosh, often the only relief. Like all powerful medication it needs to.be used sparingly and with the patients interest at heart. I may need it one day, and hope that wisdom and caring prevail over protocols.
You paint the picture of a person with dementia very vividly here. It's a scary thing, to lose your mind, and not know where you are and where you've come from. I hope there was something I could do to help...
Cheers,
Arnab Majumdar
ScribbleFest.com
A very good and thought provoking post. It seems downright cruel and not in the patient's best interests to keep them from help because of a statistical likelihood that helping them might shorten their lives. It's wrong to extrapolate from statistics to decide what is right in an individual case. There are issues of humanity and compassion here. I'd liek to see this debated on the Moral Maze on Radio 4.
I have mixed feelings about this, Anna, because I've seen proper use and also abuse of these drugs. My decision to look after my mum at home when she got Alzheimers was due to seeing a neighbour of mine having her mind broken down by overuse of these drugs in a nursing home. I do understand that not all dementia sufferers are the same; I was fortunate in that my mum did not exhibit aggression as part of her condition and I think part of that was down to prescription of Aricept. I also know other people whose relatives suffer from dementia and the only relief they can get is by prescription of these drugs. But they are sometimes abused and chemical cosh does happen. It doesn't mean that we stop prescribing, but things do have to be kept an eye on.
very thought provoking and sad post this is... patients need to be helped by the healthy ...
That is why DOCTORs should be allowed to be doctors without directives from CEOs as to how best to treat without influence by fashion or worst, money. Guidelines often get it wrong, like Avandia for diabetes.
Just posted "Avandia".
Thanks for your kind comments folks and apologies for delay in replying - other things got in the way (including chronic PC problems).
Northern Teacher ~ The Cockroach Catcher has kindly provided my planned response to you!
There is also a presumption that 120,000 are receiving antipsychotics who shouldn't be. How on earth did they arrive at this figure?
Frances ~ To me, it is a sad state of affairs that the elderly demented psychotic patient has to exist in a world of sheer hell, merely on the diktat of those who follow the whims of fashions (thanks CC) in medicine.
My heart goes out to your uncle and I sincerely hope he has more dreams than nightmares.
Addy ~ Thank you my friend and I hope your daughter is enjoying her placement. We have much to learn from our elders and they deserve our respect.
Dr phil ~ I am glad that you agree with my views. Regrettably, it appears that some GPs regard psychosis in the elderly as caused by lack of attention from those who work in care homes or that psychosis could somehow be 'cured' by 1-1. I wish they would spend a day with us!
Arnab ~ Thank you.
Jenny ~ As you rightly say compassion and humanity are very important here and should be paramount when providing care. It would be worthy debate on Moral Maze.
Julie ~ Of course it is possible that patients can be oversedated (and not only by antipsychotics)and you describe the sad situation of your neighbour - it is worth asking where was the follow-up from whichever physician prescribed this medication.
Any relative who is concerned that their loved one is oversedated should seek an audience with the prescribing GP or psychiatrist. (I saw my mothers GP although not for this reason).
It is the case that dementia is a progressive disease and the mind breaking down is part of this - although I am not saying this was so in your neighbours case.
We have a few residents who sleep the clock round (woken for meals) who only receive meds for physical conditions.
(I feel I am making excuses for your neighbours plight here - please may I assure you this is not the case).
Israr ~ Thank you (My hero!).
Cockroach Catcher ~ Understood! (I have left a comment on your post).
Anna o]
ugh...this is one thing i fear...losing my mind...cant imagine though my mom is getting up there and may have to deal with this yet...you capture the tension and feel of it well in this...
That could have been my Granddad. We lived with him until pernicious anaemia (and the hospital drugs) destroyed his mind. I only saw him once after that - I was very young and not allowed to go again - but I've never forgotten the experience. You convey the essence of the fear and horror very well.
Thank you for your kind comments Brian and Dave and apologies for delay in responding - chronic PC problems continue (and even a kindly loaned laptop (which I am using now) was ignored by the remote computer from Friday until now!)
Cheers!
Anna :o]
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