Dr Nick Read

Gulags in our cities; the terror that awaits all of us.

It’s the smell that hits me first.  Not the ferrety lemon yellow scent of the whole building, but a dense, dark, dirty green,  pungent ammoniacal stench of soaked-in urine that has started to degrade, the stench of hell.  This I become aware of a subdued moan; ‘Oh dear, oh dear, oh dear, oh dear’, never stopping just altering in intensity and pitch as she senses my presence. 

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.