Mum is lying in a padded space, more like an open coffin than a bed.  Her bed clothes are down by her ankles, her best  dress that she created so carefully in happier times, is up around her waist revealing a loin cloth of  padded paper soaked in urine.  She crosses and recrosses her bare legs in a parody of orgasm.  She tears at her buttons.  Her eyes are wide with terror. 

I lean over her, kiss her forehead, look into her unfocussed eyes and say ‘Hello Mum.’  At that she turns and glares, reaches out with a claw and pinches my arm hard.  At 94, she can still hurt.  The litany pauses and changes,  ‘Please, please, please. Oh Nick, oh Nick, oh Nick. Unkind, unkind.’ It  breaks my heart to see her like this.  Hadn’t I promised never to let her go into a home?     

They bring her supper in and I try to spoon some soup into her mouth.  She swallows a few sips and then pushes my hand away as terror fills her eyes.  ‘No, no, no!’  I tear a morcel of egg sandwich and place it on her lips.  She opens her mouth and chews then spits the masticated pulp into my hand.  She takes a few sips of juice and then glares at me again.  No,no,no! 

A young nurse comes in, leans over her bed and asks me what she should do.  As if I knew!  Just be calm and keep trying.  At that mum reaches out and grabs the scarf she wears around her head and pulls.  ‘No, mum, let go.’, I say sternly but she just holds more tightly and tries to pull the poor girl into her coffin.  I distract her with more drink and she releases her grip. 

Mum has needed round- the- clock care for about a year.  It has worked well for most of the time.  She has been able to stay at home, she could eat, go to the toilet by herself, walk with a frame and she has slept for a bit most nights.  Things were stable, though she had occasional bouts of aggression in which she scratched and bit the carers.  Then her two main carers became ill.  Overnight, she refused to collaborate.   She insisted in going to the toilet unsupervised.  The inevitable happened.  She fell, lost confidence, wouldn’t walk, got a chest infection and ended up in hospital (see The Averted Face of Care, 5^th September).  By the end of the week in St Benedict’s, she was started to walk again, she was dry, feeding herself and ready to go.  But she could not be assessed to go home for another week and besides it was the weekend again and she needed a hoist so the carers could cope.   There was no alternative but a nursing home.  With a sinking heart, I reluctantly agreed. 

Perhaps I should have checked Silverdale out, but it was the one used by St Benedict’s and as I indicated to the sister, the plan was for a week’s further mobilisation and then back home.   Besides, this home was one of the most expensive in Sheffield, so, I reasoned that she would have the best chance of getting back home quickly.   But I was wrong. First impressions were that the home seemed crowded,  understaffed and functional.  There were thick carpets on the floor and that pervasive ferrety odour.  Mum was asleep when I arrived and when I came back later, she was being bathed.  I asked the nurse how she was settling in.  ‘Oh fine,’  was the answer.  Why is it that when people say fine, you just know it’s not.  What does FINE stand for?  Frightened, Insecure, Neurotic and Enraged.  Yes truly, mum was fine.      

So many people, including those who should know better like doctors, nurses and carers  make the mistake of thinking that just because a person cannot seem to think and express themselves, they don’t feeling anything.  No sense, no feeling, they say.   It’s not true.  Our cognition tames and makes sense of our feelings.  If we have lost our cognition, then we cannot deal with our feelings and we are left with the terror with no reassurances to calm it.   

I can only think that for mum it must be like being shut up in her own personal Gulag, deprived not only of  freedom but also of personal contact, suspicious of everything and everybody, terrified of what they might do to her,  subjected to sensory deprivation, extreme physical discomfort and the most degrading indignities every minute of the day.  Guantanamo was never as bad as this and yet old people are condemned to this every day in our own towns and cities.  No wonder they decline so alarmingly.  What makes it seem worse is that mum is such a private person,  so nervous of other people.   She and those like her, must feel the sheer terror, and yet there is nothing that she or anybody else can do about it.  She suddenly plummets to the next tier of system of care.  Some may ‘settle’, but the majority, I fear, never get over it. 

Don’t think I am complaining about any particular home or any staff.  I think most really do their best.  It’s the system, which seems to encourage a policy of organised neglect rather then care and rehabilitation.  I just feel the system is more concerned with insurance and health and safety regulations that are more about fear of litigation than compassion and care.  Elderly people have experienced rich, diverse, interesting lives. They are a rich resource of history and wisdom, not just a bit of old crumble waiting to die. They deserve more than to be institutionalised and subjected to such trauma.  People would be outraged if this happened to children.  And they would never, ever treat a dog like this.

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I went through to the bedroom.  Mum was half lying, half sitting on pillows, wild eyed, without teeth, without hearing aids or glasses.  I was shocked.  I put her teeth and hearing aids in, put her glasses on and asked Rosina to help me get her up.  She looked scared and refused.  ‘I’m not allowed.’  So I manoeuvred mum out of bed onto the wheelchair and wheeled her into the sitting room and danced with her onto the sofa,  where we settled down and thumbed through old photos of Bristol.  When the next carer arrived, I asked if they would change her pad.  Rosina looked doubtful but Joanne said ‘of course.’    Afterwards, as she was going, Rosina told me there was faeces in it and they weren’t allowed to deal with solids. 

Later,  Cheryl rang from the office and told me she had talked to the rapid response dementia team, the district nurse, the physiotherapist and they were all of the opinion that mum had to go into hospital.  ‘It takes two carers to help Doris onto the commode or to change a pad.  And they cannot deal with solid matter’. 

I sighed, ‘Health and safety.’ 

‘Nick you would not believe how many regulations there are these days.’ 

‘I would, Cheryl, I would.  But the bottom line is that if mum goes into hospital, she will die, and I don’t want her to go like that.’ 

I had visions of her waiting around behind a curtain in Casualty for hours and then being going  to a crowded and noisy admissions ward.  So I announced: ‘Why don’t I be on call, Cheryl.  I can call in twice a day to lift her.’  

‘But, Nick, you will need to be in all the time –  even through the night.  You will not get any sleep.  And how are you going to deal with her if she is incontinent of faeces?’

‘Well, I will just have to be less squeamish.  Can’t we at least try it?’ 

Mum had rallied with me there that afternoon and I didn’t want to abandon her now.

‘No Nick, I really think we have come to the end of the line.’

It had all started after the fall.  The carer had left her alone in the bathroom and gone into the kitchen to make breakfast when she heard a crash.  The doctor decided she hadn’t broken anything, but thought she had a chest infection.  He prescribed oral morphine, which I withheld because I felt it would hasten a slide into hospital. 

But now there seemed no alternative, so I telephoned the GP and arranged for mum to be admitted to a private hospital over the weekend.  Four hours later and the ambulance still hadn’t arrived.  ‘Oh, it’s Friday night and they will be out on 999 calls.’  Mum was exhausted and sinking, so I dialled  999. 

‘Oh no, squire’, said the paramedic, who was built like a rugby player.  ’Our rules are we have to take her to casualty at the Northern General and then they can take her to St Benedict’s after that.’ 

‘But she’s already got a bed in St Benedict’s.’ 

Eventually he agreed as a favour, but explained how much trouble he would get into if his supervisors knew.  ‘It’s not me squire.  It’s the regulations. You’ve just got to be so careful these days. But she’ll like it here.  They’ve got shower gel!    

St Benedict’s was quiet and peaceful.  Mum settled into a comfortable bed and went to sleep. 

The next day, they phoned me at 8.30am and requested a deposit of £2500.  I gave my credit card details and then asked to be put through to the ward. I was connected to the consultant, who explained with great grace that they had taken an Xray and would begin to mobilise her if there was not a fracture. 

But when I arrived, she was fast asleep and unresponsive.   They had not got her out of bed.  She had been incontinent overnight and she was not swallowing water.  

I talked to the sister. ‘We’re a busy ward.  There are surgical patients and children.  Your mum needs a lot of attention and it’s the weekend. I don’t have the staff.’ 

Can nobody help care for mum?  I have encouraged them to put up a drip and give IV fluids, they have catheterised her.  I know when meal times are and will go and try to get some of that delicious cottage pie down her. 

I suspect their attitude is to let her die with dignity.  That’s fine, but although she is 94,  mum’s heart is healthy and she is physically quite strong.  She needs the kind of 24 hour one on one attention the carers were giving her at home, but she will never get that in hospital.    In the meantime, they give her lovely food but she can’t feed herself,  they provide drink but she won’t drink it,  they prescribe mobilisation but the physio looks after the whole ward and doesn’t have the time to get her up on her feet and mum is too frightened. 

She’s now been in St Benedict’s for three days and there’s a change.  It’s like she has lost hold of her life.  When I arrived yesterday, she was slumped in a chair, desperate, pleading, ‘Oh please, oh, please Nick, pulling at the sheets on the bed, plucking at her drip, trying to sit up.  I put her hearing aid in and tried to communicate but when she responded, it was with half a sentence.  ‘I want to go …. Get me out ….. Nurses…… Toilet’ .   She recognised me, stared at me desperately before her eyes seemed to cloud and look away. 

I phoned the consultant.  ‘It will be a long haul to get her back to where she was before she came in, if she ever gets back.  Over the next few days, we will get her over the infection and try to encourage her to feed herself and walk, but I suspect this will take more time than we have got.   You will need to get her in to a nursing home.  

I guess mum had been on the brink for some time,  kept going by the constant round the clock attention of her carers.  It would only take a moment’s neglect; a fall plus the rigid application of  regulations and she was suddenly in a place where they couldn’t help.   I sense her terror.  I hold her and she quietens a little but as soon as I let go, she’s back in her own version of hell.   And what now?  She certainly can’t go back.  She will go to a nursing home.  They will keep her body alive , they will feed her, give her drinks, turn her, manage pressure sores.  I can only pray that her mind has  long gone by then,  she has released her fierce grip on life and resigned to oblivion.  

People say that the British have the best care system in the world.  It’s not true.  The boost in NHS funds may have enhanced the efficiency of health provision, but it has not improved care.  Care requires flexibility and compassion.  It takes human understanding to know how to work within the rules to provide what a patient needs.  All too often regulations lead to restriction and a withholding of care.    

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