The Twilight World, that chamber of horrors complete with trick mirrors distorting reality, and ghostly shrieks from memories past, that some unfortunate individuals are forced to dwell in towards the end of their days.
It is a subject much discussed by the armchair diagnosticians these days with respect to Lord Janner – they are able to discern incontrovertibly, from newspaper reports no less, the precise spot on the path between light and darkness currently inhabited by Janner. A rare gift that – for even those nearest and dearest to the afflicted are unable to state with any accuracy exactly what is going on behind the facade of the person they may have studied intently for 50 years or more.
Doctors, even psychiatrists, can only speak to what they see and hear during a brief period of time – they cannot predict the future – so dementia is not a broken leg that you can diagnose with the accuracy borne of seeing the bone sticking out of what should be a well shaped calf. It is not a ‘positively demented’ or ‘definitely not demented’ diagnosis.
Nor is it a static diagnosis. To say that someone has dementia is not to assume that they exhibit dementia at every moment of every day – it is to say that no longer may outsiders assume that the response they get or the action taken by the person concerned is one borne of genuine autonomy – it may be a reaction to those trick mirrors or voices from the past that makes them act the way they do.
It is known as the cruelest of diseases for good reason – the person who is likely to suffer the most from it is a long standing partner. It is their lot in life to step up to the plate as the physical function of the afflicted diminishes.
Husbands who have been captains of industry, attended by those hand-maidens known as secretaries, suddenly find that they must make an urgent acquaintance with the washing machine, not just for their own benefit, but to rid the household of the faeces-smeared sheets that their previously fragrant wife and co-attendee at grand functions is now dragging down the high street and attempting to board the No 11 bus with…
They must learn to cook and feed an ungrateful wretch who now refers to them by the name of the lover she took 30 years ago, a blip in their marriage that was all but forgotten until Dementia woke it up again. They may find themselves nursing a broken arm, the result of a hurled chair by the sweet faced girl they married so long ago – a creature they still love with a passion, but whose behaviour can be utterly irrational.
When it was my lot to visit such households, I wept inwardly for the proud man who attempted to keep the conversation flowing normally with this visitor, whilst his wife unceremoniously hitched her skirts and urinated on the living room carpet before landing her damp bottom on my knee. What agonies of lost pride, despair, and hopelessness he was going through I can only begin to imagine.
Ditto the tough north-eastern sea captain, who had sent his wages home to his wife for nigh on 50 years. A wife that now sat unblinking and uncomprehending in the corner of a room pin neat – except for one thing. The buckets set to catch the rain water from the leaking roof. The money, all their ‘joint’ savings, was sitting in a building society account in her name – what had been the point in a joint account when he was never there? The Court of Protection had impounded all ‘her’ savings and now was prepared to pay for ‘half the cost’ of the roof repairs reflected by her ‘half-share’ of the house. A man more used to instilling fear and loathing in tough North Sea fishermen wept his way through half a box of my tissues as he explained to me that he couldn’t pay for ‘his half’ with the £39 a week the government was pleased to give him as full time carer for the shell of his feisty wife.
I thought of all these people and the silent misery in so many households when I read of Meryl Parry. Meryl knew all about the sort of situations I wrote about above – she was Age Concern’s co-ordinator for support services and advocacy; just as a side line, she acted as chairman of the NHS public and patient involvement forum, helping to ensure that the elderly and vulnerable received the proper services. She had been at the sharp end of the ‘dementia trade’ as it is sometimes called – for many years running the Eden Court sheltered housing scheme at Lazonby for Age Concern.
Exactly the sort of person who would have known precisely the best way to access the limited help available for those struggling with the elderly demented. Except for one very pertinent point – it was now Meryl Parry who had succumbed to dementia. No longer could she advise others – now she was in need of help.
As she slipped in and out of a demented state, she made spirited attempts to return to familiar places – on a June afternoon last year she climbed out of a window and tried to walk on familiar paths in the moorland surrounding her home – it was the following morning before the mountain rescue teams located her and returned her to her husband. A WPC present at the time described how she had made 81 year old Mr Parry a cup of tea and he had sadly commented ‘it is a long time since anyone has done that for me’.
Minutes later, Mrs Parry was located, and the same WPC said:
“She came into the kitchen and he was immediately at her side.
“He sat down and cared for her, checking her for injuries, removing her wet socks and debris from her hair.”
Mr Parry said he had no support and spoke of the impact of Alzheimer’s on his wife, whom he clearly cared for deeply. The officer said: “He reminisced about when she was well and a teacher.
“He said how saddened he was by his wife’s disease; how it had taken her away; and how overwhelmed he felt about the cruelty of the illness that his wife was suffering.”
Excitement over, the mountain rescue teams packed up their equipment, the police got back in their car and filed their reports – and 81 year old Mr Parry was left to deal with the situation alone again. Somehow he managed to stop Mrs Parry from escaping and wandering – did the ‘somehow’ include all those methods approved of in the Deprivation of Liberty guidelines? I neither know nor care. Nor did anyone else it seems.
Days turned into weeks, weeks into months, Christmas loomed. Mr Parry soldiered on, caring for the shell of his wife. Some good days, some bad. Mr Parry himself fell ill, a blocked bile duct, a painful condition, one that would leave you wishing someone would look after you – but although there was a Mrs Parry, she was in no position to care for anyone else. There was only one thing for it – someone else would have to look after Mrs Parry for a few days whilst he went into hospital to be restored to full carer’s health.
He spent a day, last September, phoning every nursing home in the area. Finally discovering an empty room in the Greenlane House nursing home. They specialise in the care of Alzheimer’s and Dementia, charging £500 a week for providing the sort of care that Mr Parry had been providing for pennies by comparison. Experts in their field. They’ve been quality commission inspected several times: “We saw a member of the staff team setting one lady’s hair because ‘she enjoyed it so much’.”
What the Quality Commission didn’t see was what happens when the Green Lanes Care Home, experts in the care of Alzheimer’s patients, meet a genuine Alzheimer’s patient behaving like a genuine Alzheimer’s patient can and will – rather than being the grateful recipient of an extra quota of hairdressing…
Mrs Parry climbed out of her bedroom window and attempted to go for another walk on the moors. I can well understand how that must have disrupted the cosy Bingo game/Jeremy Kyle show in the main sitting room – but instead of sympathising with what Mr Parry had been going through for months and years on his own – the staff, and owner Mrs Pratt, decided that this was more than they could be asked to put up with – and drove over to Mr Parry’s isolated house late at night, depositing Mrs Parry and her belongings. She was, apparently, ‘only on approval’.
Trying to get himself into hospital, his wife being ‘returned’ from the only available care home bed was the last straw. Nobody was going to help them. He put sleeping pills in Meryl Parry’s cocoa, and when she was sound asleep, put a polythene bag and a pillow over her head. Then he took himself off to the garage to kill himself – having thoughtfully left notes for the Coroner and a cousin pinned to the front door. Sadly it is many years since gas was an efficient means of killing yourself, and Mr Parry survived. He phoned the emergency services immediately. The WPC who attended wept as she gave evidence:
She had spent two hours with Mr Parry, listening as he described some part of what happened. “He told me he’d taken her to this care home the day before,” said the officer.
“He said she’d been returned like a farm animal.”
She said that on that day, Mr Parry had clearly felt that had no other options. The pensioner was clearly upset by his failure to kill himself.
Well, naturally the ‘cradle-to-grave’ welfare State swung into action at this point. The State asserted it’s right to charge Mr Parry with Murder. He was carted off to Durham Prison. There his medical condition and frailty was reported to be such that although a bail application was being made, it was to be a condition that it should be in sheltered housing in Penrith. Mr Parry needed bail you see, because he was still trying to keep appointments for his painful bile duct condition.
Within a few weeks of getting bail, the local news was cheerily reporting that a ‘murder accused’ had ‘skipped’ bail. It sounds rather cheery, doesn’t it – ‘skipped bail’? The truth was that 81 year old recently bereaved John Parry, suffering from jaundice, exhaustion, not to mention the gas inhalation, and being barred from his home (now a murder scene) had ‘plodded determinedly’, rather than ‘skipped’, down to the River Eden between Kirkoswald and Little Salkeld and committed his mortal coil to the icy waters. Just a few days before Christmas.
Just a few days later, and 50 miles away, the body of Edith Gravener, who suffered from dementia, was discovered. Asphyxiated. Hours later, the body of her husband and carer, Ronald, was pulled from the icy water of the Carr Mill dam. Desperate, desperate people.
Meanwhile, back in planet media: agonised inches are consumed trying to figure out how it is that a head uncoupling, homosexual tossing, wife beating, war zone of a country like the so-called Islamic State can possibly entice a 75-year-old man to leave the wondrous UK and embrace starvation in the arms of their murderous regime. We’ll fret about ‘getting them back to safety’.