The staff at Silverdales had agreed to write a letter and pack up her belongings and medications.  There was a slight hiccup when the Primary Care Trust demurred over funding her continuing health care, but Catherine reassured them that Abbeyfield also cared for some patients with dementia and after a delay of just two days they agreed.  I could scarcely believe how smoothly it had gone. 

We even had a window on the weather.  It had snowed the night before but the roads were passable and no more snow was forecast until the day after the move.  It was a little icy on the hill to mum’s flat, but I quickly gathered together her favourite pictures and ornaments, found her shoes and a warm blanket and set off to collect her from Silverdales.

The ward had been transformed into Santa’s grotto.  The staff were all in fancy dress.  An elf in stripey red stockings told me that mum wouldn’t come until she’d finished her coffee.  ‘Twas ever thus’, I said.  So I took her stuff down to the car and when I came back she was in the toilet and there was a queue of reindeer forming outside the door.

Betty was a little tearful.  I needed to explain to her several times that ‘No, Doris was not her mother in law and I was not her husband.’  It was all a bit too much for her, but she kissed mum and wished her a happy Christmas.  And so we took our leave of Santa’s helpers, the elves, the reindeer and the gnomes. 

The rather serious lady on reception was dressed in white with wings and a gold tinsel band round her head. 

‘Are you the fairy on top of the tree?’  I asked her as we went out.

‘No, she said, without a hint of a smile, ‘I’m an angel.’

Mum was quiet in the car and I put the radio on.  Every so often she would reach out, squeeze my hand and smile. Two hours later as we approached our destination,  I turned the radio off.  Almost immediately, she became fretful.   ‘I can’t get my breath.  Where’s my hanky.  I’m so hungry.  I want to go to the toilet. 

I explained again that she was going to Abbeyfield  House for Christmas and Simon and I would be just down the road.  I wasn’t sure she’d taken that in; she was much more concerned about lunch and going to the toilet.

 While Catherine got her a glass of sherry and some fish and chips for lunch, I went upstairs to personalise her room. I was going through the inventory with Kirstie when an agitated Catherine came in.  ‘Your mum is having an eppy.’

Close on her heels, mum appeared at the door, face as black as sin, but then she recognised me and smiled.  I showed her the pictures, the photographs of me and Simon, her chocolates and her musical lamp. 

‘What’s my stuff doing here?’

‘You’re staying here over Christmas. It’s really nice. Simon and I will be just down the road’ 

‘I’m not staying here.  I don’t like these people.  So you can just take all this stuff down and take me home.’

Then Catherine tried to persuade her.

‘And who are you?   You want to get rid of me too, I suppose.’ 

I tried a more robust approach.  ‘I’ll take you back to Silverdales, mum, if that’s what you want, but Simon and I will be here for Christmas. And it’s going to snow again.’ 

At that she started thumping her fists against my chest.  ‘Oh, so I’ve got to come to you.  Well, I’m not .  You –thump – can – thump – come – thump – to me!  Big thump!

Ok mum, we’ll take you back.  Let’s just hope the snow stays off.

I rang Sheriott.  Her room at Silverdales was still available. The journey back was a repeat of the  morning’s expedition.  She was quiet and we listened to the radio. 

Santa’s little helpers took her off into the day room to join the elves still preparing for Christmas while I went to put her stuff away.  

A few minutes later, she appeared at the door.  ‘Nobody is talking to me in there.’

‘Never mind mum’

‘Do you want a chocolate, dear?’

‘Oh, yes please, mum. Then I must go before it snows. ’

‘Well, it’s been a lovely day.  Thank you so much darling!’

Isn’t it tragic when fear forces people into actions that you know will harm them and you can’t do anything about it?   

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I try to gain her attention.  ‘Hello mum.  Nice to see you.’  There is no response, then like a beast in a field, she gradually turns her head and stares into my eyes, a look of slow reproach tinged with confusion as if she knows she knows me but can’t quite work it out.  It’s like her slow memory of me doesn’t quite fit.  She has gone to another place; a place that I had put her, a place where I can’t follow. 

 With infinite sadness, she moves her head across, leans her head into the gap between my shoulder and neck.  I stroke her hair, silky grey,  washed and combed that morning.  She pulls away, looks at me for longer  – mum was always good at the long looks.  I meet her gaze, hold it, will myself to energise the connection  -   but her battery is low, the circuits  slow, faltering, missing.  Then a glimmer in the hooded eyes, a recognition.  A flash of panic.  ‘Too much, too much.  She looks down, puts a hand up to her face as if to weep, but buries her nose in it instead,  as if hiding from an intolerable reality.   After a while, she looks up again, makes as if to speak.  Perhaps, even now, there will be a meaningful comment, something I can console myself with, when her body has gone and the formalities complete.  I put my ear to her lips. 

‘I want to go to the toilet.’

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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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It was like a metronome, every second.  Simon worked out that at this rate, she would say oh dear, 3600 times an hour,  up to 50,000 times a day,  15 million times a year.  But the mantra had some more intense variations;  ‘oh no,  oh no, oh no’ or just ‘no, no, no no’, and worse still, ‘oh please, oh please, oh please, oh please’ and then ‘oh Nick, oh Nick, oh Nick’  Anybody listening to this would be bound to think, ‘Whatever is he doing to that poor woman?’ 

Every so often she would stop and ask where we were going.

‘We going to Chatsworth mum. You know to my cottage’ and I’d make a motion with my hand as if to open the latch. 

‘Chatsworth.’, she’d say puzzled and then she would get it.

‘They brought the lambs in.’ 

‘Yes that’s right.’

‘What are we going there for?’

‘We’re going to have tea; turkey sandwiches, Christmas cake, mince pies.’

‘You going to leave me there.’

‘No, of course not.’

‘We’ll have tea and then take you back home.’

‘Home?’

‘Yes, to your flat.’

‘My flat?’

‘Yes, number 9 the Woodlands, Shore Lane.’

‘Do I live there?

‘Yes.’

‘And then you’re going to leave me to walk?’

‘No!’

And the litany would all start again, ‘oh no, oh no, please, oh please’.

It is all very tiring.  Although I am not doing anything awful to her, it feels like it.  The reality is that her life is dreadful. She has lost her identity.  She cannot remember anything from one moment to the next and so everything is alien to her, confusing. She  doesn’t know where she is or what is happening. 

And so a pleasant drive in the country is torture to her.  She has been taken out of her environment along roads she can barely remember to an unknown destination for no clear purpose.  And because she has never really been able to trust that things will be allright, she fears she will be abandoned and never find her way back.  It must be terrifying. 

When the Red Army invaded East Prussia in the winter of 1945, millions of people were forced by fear of murder and rape to flee their homes and join the columns of refugees escaping in sub zero temperatures towards the west.  That was their dreadful reality.  They didn’t know where they were going or why and many died on the way. Mum’s world must seem just as threatening.  She does not know where she is, she has no home and she sees confusion and danger everywhere.  Sometimes when I have to repeat the same facts to her for the twentieth time, it is important to realize that this an anchor point, however ephemeral, in a devastated world.

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I had some pizza that I made the previous night and thought to share that and the remains of a bottle of claret with her.  But she is not right.  Julie has told me that she gets very emotional at the prospect of me coming round.  I have recently begun to wonder whether my frequent visits were helping her.

I hear her as soon as I open the door, the regular rhythm of querulous grunts, interrupted by ‘Oh Dear, Oh Dear, Oh Dear!’  My heart sinks! 

‘Hello mum!’  I say with as much dramatic enthusiasm as I can summon. 

‘Oh, Hello Nick.  Thank goodness you’ve come.’  She grabs hold of my hands and looks  up at me.  Then her face breaks down and she starts sobbing, a thin high pitched whining note.     

I lift her up and hug her, stroke her hair.  ‘There, there, whatever’s the matter?’

‘I don’t know’, she replies, as she lifts a tear-stained face and gazes imploringly at me, ‘I don’t know’. 

I feel her desperation like a heavy band squeezing my heart; a pain like pressure that I can’t relieve.  How dreadful it must feel to lose touch with your life, like being trapped in a pit with people staring in but unable to reach you.        

She staggers unsteadily behind me as I put the pizza in the microwave and pour two glasses of claret.  She follows me to the table and stands there, unsure of what to do.  I sit down, cut up her meal and invite her to sit and join me. 

The grunts recommence as she slowly cuts the pizza into still smaller pieces and raises them unsteadily to her mouth. 

‘Cheers, mum.’  I lift my glass. 

‘Oh, I can’t finish all this.’

‘Well, don’t worry.  Just do your best.’

‘You’re eating too quickly.  And then you’ll leave me.’

‘Don’t worry.  I’m in no rush. Just take your time.’ 

More grunts, then she stops, her fork poised.  She gives me a long look.    

‘You do like coming to see me, don’t you?’

‘Yes, of course I do mum.’

‘You’re not going to stop coming, are you?’

‘No, mum.’

‘You don’t just do it out of a sense of duty, do you?’

‘No, mum.’ 

‘Come on then, let’s have a smile.’ 

I feel confused.  Why do I feel so bad? 

It is projection, of course.  Mum is making me feel her fears; the same fears that have undermined her all her life.  She was a lonely child.  She never knew her father; he had died during the Great War.  She had no brothers and sisters, no friends. Her mother worked all hours, looking after her family and running the business.  Although she had all the care and later, all the opportunities and material possessions that her mother could buy, she felt lonely, deprived, in the way.  She grew up without the confidence of belonging.  And now at the end of her life, she is still that same lonely little girl, unable to trust anybody or anything and desperately needy of attention and reassurance.  So as she  regresses towards the vanishing point of pure narcissism, the essence of her being, the feelings that drive her have become ‘her’.  She is deeply unhappy; the orphan girl, the abandoned lover, the lonely old lady.  She has to pass on the distress to those who are closest to her.

I feel responsible for her unhappiness, though I know in reality I’m not.  I feel compelled to do as much as I can to satisfy her needs, reassure her, comfort her, but it can never be enough.  How many birthdays have I made that special effort only to have her find fault? I never seem to learn. She passes on a lifetime’s grievance. I experience the same  pernicious blend of entrapment, compromise, irritation and guilt. So much so that I fear that it has become part of who I am. Relationships have always tended to recreate feelings of entrapment and obligation and I have found it hard to tolerate my own loneliness and find freedom.   

So it is my fault that she is feeling bad. I am here under sufferance. I don’t want to see her.  

The awful thing is she is right.  When she is heavy, like this, I don’t want to be with her.  I can feel an almost infinite compassion, but her pain and my guilt are almost impossible to bear.  And the more I deny the antipathy and reassure her, the worse we both feel; me, because I cannot be honest; she, because she cannot gain a real justification for her grievance.  So I try to steer a winding path through ensnaring undergrowth between understanding and care on the one hand and brutal honesty on the other.      

You might say it would be better to sort things out for her in a practical sense, do my duty and leave. But that doesn’t work.  No suggestion, no alteration of her circumstances is ever right.  She doesn’t want practical solutions.  She will always find fault with them.  They are incorporated into the grudge.  In fact, to help her is probably the worst thing I can do, because by gratifying her demands, I take away her remaining power, the manipulative power of the grievance.  What she wants is constant attention, understanding and reassurance, but even that has to be questioned, denied.  It seems so shocking to say it, but what she envies and wants is life, my life!  And in refusing to devote the totality of my life to her, I feel guilty.  She’s my mum, after all.  Surely I owe her my life.   

But I’m a psychotherapist.  I recognise the manipulation and the need to maintain a boundary in order to protect myself from it.  But I feel the loneliness and desperation that hides behind it.  As a little girl, mum would have learnt that the only way she could soothe her distress was to get her mothers attention, even if the ways of doing it made her angry.  Any attention, even angry attention, was better than no attention at all.  And there was always the hope that her mother would soften, recognise her distress, calm things down, rescue her.  After all, how could anybody turn away from such distress.  And if they did, well she just raised the stake, became more desperate. Guilt is such a good way of manipulating people.    

I feel disloyal in writing and posting this article, but it is cathartic and helps me defend myself against the other guilt. Perhaps there is some deep seated resentment, simmering away, but I do not wish to be unkind. And after all, so much of what is her is in me.  Only by understanding that, can I find ways of helping us both.  I feel desperately sorry for her, but also terribly trapped.  Nevertheless, I have a choice. I can either bear the guilt and suffer with her or I can seek understanding and some distance.  I feel the latter will help her more.   

In January, I am planning to go away travelling for three months.  But she is 93 and frail.  What if she dies?  How will I eve forgive myself?   

She knows this, of course.  When she is particularly aggrieved with me, she fixes me with her gimlet eye and says,  ‘You’ll be sorry if I’m not here tomorrow. I shall come back and haunt you, you know!’      

‘Yes mum; I think you will.’    

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I demurred.  I have an aversion to what I see as unnecessary fuss.  After all I had with a discharging sinus into my gum for the last five years and it hadn’t blown up.  And mum was already attending the ear clinic for deafness, the eye clinic for injections of Lucentis  (costing the NHS £1000 a shot); she was attending the memory clinic for Alzheimer’s and now her teeth were playing up. It was a running joke between us. 

‘Eyes, ears, teeth and memory.  At least your nose is alright, mum!’ 

‘No it’s not.  Feel it.  It’s so cold!’ 

She still had a sense of humour.  I was her feed. 

Anyway, that tooth flared up.  She got an abscess in it.  Her temperature didn’t go up more than a degree but she became drowsy, more confused, went off her food and wasn’t drinking enough.  The extremes of life are such vulnerable times.  For the very young and the seriously old, an infection can set in train a sequence of events that can lead to death. 

At first they tried Amoxycillin, but she became nauseous and the temperature didn’t shift.  So they changed it to Augmentin.   She rallied a bit, but then declined.  The day she fell asleep in her porridge, I finally decided that she needed more help.  I called the doctor.  She would not be able to visit for three hours and suggested I dial 999. 

‘Don’t give her any food or drink.  Collect all her medications together.  Call us immediately if she gets any chest pain.  Somebody will be with you in half an hour.’   They were as good as her word. 

The paramedic had a strong jaw and a decisive manner.  After just ten minutes, he gave his report. ‘Pulse 72 regular, BP 110/70, Blood sugar 5.1.  Temperature 37.8.  She’s a bit dehydrated. Respiration good.  Lungs clear.  No obvious pain.  Pupils equal.  Responding normally but drowsy.  I suspect she has an infection but we need to get her into hospital to get some fluid inside her, treat the infection and check her brain scan.’ 

My heart sank.  To my mind, hospital is where the elderly go to die.  It took three hours for her to be ‘processed’ through casualty while she sat propped up on a trolley in extreme discomfort and with nothing to drink.  

After an overnight stay in the noisy confusion of the Medical Assessment Unit, she was moved to the pride of the hospital,  the spacious, high-tech environment of the Hadfield Unit, a state of the art intensive care facility for the elderly. 

When next I visited the next day, mum lay adrift, cocooned in pillows in a bay the size of a large meeting room with enough space to wheel in Xray equipment, heavy duty cardiac resuscitators, scanners and whatever else was needed.  It seemed alien, impersonal, a futuristic medical facility on a starship, staffed by holograms.  It looked like she had already died and was in the departure lounge awaiting transportation to another dimension.  

The doctors, a pretty young woman with long hair, flaired trousers and short top that exposed a little too much midriff and a young man in jeans, an open necked check shirt and stethoscope draped around his neck, were posing for a photo-shoot at the entrance to the bay. 

Why don’t they wear white coats these days?   Perhaps I am just too old fashioned, but it would convey a degree of professionalism that would inspire confidence.  But they were approachable and friendly and offered their opinions with authority and tact.

It was the nursing that worried me.  The woman in the bed across the bay from mum was on the commode.  I had seen the orderly deliver it twenty minutes earlier. She was calling out in some distress.  ‘Is there anybody there?  Please help me.  Oh please help.  Is there anybody there?’  But the nurses strolled past and ignored her.  After another five minutes, I could stand it no longer.  I went up to the gossip of nurses busily sitting at their station.

‘Excuse me but the lady in bay three seems to be in trouble.  She has been calling out for the last half an hour.’

They stared at me crossly. I could have used my ‘I am a doctor’ ploy, but I didn’t want to.  Why shouldn’t they respond to me as a human being?  One of them, the most senior, I guess, her dark blue uniform buttoned up very tight, responded tersely.

‘Oh, that’s Eileen.  She’s always calling out!’

‘But I really think you should….’

‘Oh all right, then!’

Eileen had fallen off the commode on to the floor.  Later the senior nurse had the decency to thank me.

But why in this intensive care environment, did nobody seem to care enough?  Why did they leave meals in front of patients who couldn’t feed themselves and just return to take them away?  Why did nobody help people drink?  Why was mum never mobilised except when I took her to the window and back?  Why did nobody just sit and talk to her?  She was so terrified.

Mum’s mental state just deteriorated in hospital.  Always a proud, private person, she seemed to give up all sense of dignity and self.  There was an outbreak of diarrhoea on the ward.  Mum got it and for the first time since infancy, suffered from incontinence.  Then she got a urinary infection.

It was two weeks before her physical condition had stabilised sufficiently to get her out of hospital, but by then, she had become part of the routine; she was terrified to go. 

Mum was no better after her stay in hospital.  She returned just as confused as when she went in.  She didn’t seem to know where she was anymore.  As the days past, her agitation increased.  I called her GP.  He was kind and prepared to take time to assess the situation. We decided to stop the Cipramil she had been on since before she got ill and start Lorazepam, a short acting tranquilliser with sedative properties.  It didn’t help. She became more drowsy and one day she didn’t wake up at all, but when we eased back on the dose, she became very agitated and confused.

I called the memory clinic.  At first they couldn’t remember her.  I was put through to ‘Mick the Memory’, the kindly clinical psychologist who knew mum well.  He didn’t think their prescription of Cipramil was part of mum’s deterioration had suggested I bring her in for an urgent appointment.  I explained again that she was too weak and confused to leave her flat.  Could they come and see her?

‘Oh’, he laughed,  ’We don’t do domiciliaries.  Let me speak to Dr McDonald and I’ll ring you back.’ 

He was back within the hour with a solution.  ‘Dr McDonald has referred your mother to ‘the rapid response dementia team’.   They will come and see her in a few days.’ 

They were late!  Nevertheless I was impressed.  They had sent a consultant psychiatrist and a senior psychiatric nurse.  Dr Patel wore a black suit, white shirt and tie and an expensive perfume.  His black shoes gleamed while he stroked his smooth chin thoughtfully, pondering whether it was a good idea not to treat mum for a urinary tract infection and whether we should try to cut the Lorazepam tablets in half.  But Dr Patel seemed was singularly reluctant to go into the bedroom and see mum.  His nurse did, but was bothered that mum was not awake enough to collect a urine sample, but she had forgotten to bring any sample bottles. They left after ninety minutes with the recommendation we continue with the same treatment and a promise to return every day over the weekend. 

That night while attempting to reach the commode, mum fell.  The carer, who was due to watch her, was working in the sitting room and did not hear her try to get out of bed on the baby alarm I had bought from Lewis’s that morning.  She dialled 999.  It was protocol. 

The paramedics checked her, decided there was no injury, and left suggesting that we fit her bed with cot sides and call ‘the urgency and incontinence team’.

The urgency and incontinence team can’t come until next Wednesday.  Clearly my call wasn’t urgent enough.  I went out and bought a pack of incontinence pads and three absorbent waterproof bed covers, called, somewhat curiously, Kylies.  Although quite compact, they claimed to absorb 3 litres of fluid.               

I don’t wish to be too critical of the NHS.  Any organisation that has intensive care wards for the dying and professionally staffed rapid-response dementia service, cannot be that bad. My concern is that our much vaunted nationalised health care system seems to have misunderstood that the most sophisticated technology, the most highly trained staff do not necessarily equate with quality of care.  Hospital nurses seem to have lost the ability to look after patients.  The real personal care has now been devolved to orderlies and cleaners while the nurses sit behind their desk writing reports and organising treatment plans. Mum’s GP is good; he balances his scientific understanding of medicine with the  art of compassion and healing.  He is an exception.  There are others; Mick the Memory, Liz the dentist, but too many others adhere slavishly to evidence-based practice without engaging their minds.    

We hear all the time about how expensive the NHS is, but just a cursory glance will reveal how much resource is wasted for how little gain.   Is it necessary to have such a high tech unit to keep the dying alive?   Isn’t it better to provide a caring environment to ease the last days of life and allow people to die in dignity surrounded by their family.  The Hadfield Unit only allowed visitors in for an hour in the afternoon and two hours in the early evening.  Mum was lonely and frightened. in there.  No wonder her mental state deteriorated.  And the consultant on the dementia team may have smelt nice, but would the nurse have done the job just as well by herself? 

Evidence based treatments, expensive drugs that over-treat the problem and cause too many unwanted effects, the rigid reliance of management protocols and algorithms; they all fail because they don’t take account of peoples’ individual needs.  And in the gap between efficiency and compassion lies a lonely person, often abandoned by their family and reduced by the state to the status of a machine past its sell by date.

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3. Losing her Mind; How can we understand Dementia ‘Oh Nick, Oh Nick!  Please!  Please!’   ’What is it mum?’...

 ’What is it mum?’

 ’I don’t know. It’s all gone wrong.’ 

 ’Try to rest, mum.’

 ’But I’m so hot!’ 

 I take the blanket off her.

 ’My feet are so cold.’

 I put her slippers on.

 ’Oh these are too heavy. Take them off.’ 

 I remove them.

 ’My mouth is so dry.’

 ’Shall I make you a cup of tea?’

 ’Mmm’, she gives a slight nod.

 I return with the tea and after a few minutes lift the cup to her lips. She recoils.

 ’Too hot!’

 I wait another five minutes or so and try again.

 ’Much too cold!’    

 ’Oh Nick, why are you doing this to me?’ 

 I hold her in my arms, cuddle her.  I tell her to relax, to rest, but she can’t.  She leans forward again, puts her head in her hands and utters a few sobs.’   

 ’What is happening to me?’

 ’It’s very frightening, isn’t it?’

 ’Hmmm.  Oh please let it end now.’

Mum is losing her mind.  A year ago she was stalking the corridor round her flat for hours on end searching, but she couldn’t remember what she was looking for.  She had lost it!  Now, it seems she is shipwrecked on an alien coast, frightened and so lonely, terrified of what’s going to happen to her.  She’s on her own desert island.  Although people sail past, she is in a place in her mind that they can’t reach. 

Losing her mind means losing the ability to think, the cognitive control over her emotions and what happens.  Cruelly, her emotions are quite intact.  People with dementia often know that something awful is happening to them, but don’t know what it is.  The most tragic and merciless aspect of dementia is that their distress cannot be buffered by thinking.  Most of us can calm our anxiety,  silence our frustration and ameliorate our distress to some extent by reason and strategies; resolution, avoidance, distraction, seeking company, relaxation.  Those with dementia cannot do this. Their reason has flown, there are no strategies.  For mum, something small, like me leaving the room to make tea or answering the telephone, can cause a flood of grievance, that may take hours to exhaust itself.    

Cognition is a consequence of memory.  If we can remember what has happened to us, then we can think about it and derive ways of dealing with the same situation again.  We can learn.  The fundamental defect in Alzheimer’s Disease and other forms of dementia is the loss of short term memory.  So, for mum, losing her mind means losing the ability to learn.   She can’t understand and engage with what happens or what she is feeling from  moment to moment, she just reacts, complains and needs to be rescued. 

Unable to learn, recognise and engage with people or the things around her, she has lost the sense of who she is and who anybody else is.  She has lost her identity.  That’s the most tragic thing about dementia.  How often do we hear relatives and friends complain sadly,   ’I've lost her.  She’s not there anymore.’   No she’s not!  Like mum, she’s sailed away to a lost world that they can’t access. 

Dignity is one of the last things to go.  Loss of dignity implies the loss of personal boundaries that separate the essence of us from other people.  While I was staying in her flat last week, mum fell while trying to get to the commode.  I heard the crash and found her sitting on the floor like one of the little old ladies I saw in Uganda years ago in their wattle and daub huts.  She had wet the back of her nightie.  I lifted her and pulling up the back of her nightie, placed her on the commode.  Then while she sat there, I found a clean nightdress, removed her wet one and put the clean one on.  It was a shocking act of compassion.  Mum had been such a private, not to say defended, person.  She would have been horrified that I had had to be so intimate with her, but she had lost all sense of who she was and so that didn’t seem to matter any more.       

It’s the short term memory that people with dementia lose; their ability to retain and make sense of what is happening.  They often have screen memories of the distant past, videos of events, recollections of sayings, snatches of song that are stored like isolated loops in their neural circuitry, but these lack any meaning because meaning requires them   to make sense of memories in the present and the present is just a confusion of torments.  Just a few weeks ago, mum could gain a sense of consolation from her memories.  We would talk about grandma, the pub, Wednesday afternoons sampling the miniatures from the top shelf,  we would sing bits of song together (Flanagan and Allen were favourites),  recite bits of poetry.

I dreamt I did die and to heaven did go.

Where have you come from, they wanted to know.

I’ve come from Bristol, and how they did stare!

Come on inside, you’re the first one from there.

It was a connection, and through it we could link to the present.  Memories of tea dances at Carwardines could be connected to a recent episode of Strictly Come Dancing.  And she was proud of reaching 93 and defying Auntie Lily, who berated her for going out to wartime dances with no vest on.  ‘You’ll never make old bones, m’dear!’

‘Well, I showed her, didn’t I?’

Now, it seems, she cannot gain any consolation from the past.  Looking at old photographs is torture.  She senses they mean something, but doesn’t know what, and that is infinitely distressing. 

‘Take them away! Oh, please, please!  Take them away!’ 

So her past has gone for her; it only exists in the minds of the people, like me, Simon, and just a few very distant relatives.  Her funeral will be very sparsely attended. 

And there is no future.  The future requires imagination. And her failure to learn and make sense of what happens has choked off imagination.  She cannot project herself into the future.  Without a clear sense of the present, she is unable to think of how things might be. It is quite impossible for her to plan or look forward to the future.  There is no expectation, no hope, just a nameless dread, an existence dominated by need and fear.  She is in her own private prison, locked up in the misery of the present with no meaningful past and no future.  It must be purgatory, a living hell!  Without cognition, her life has coalesced to a torture of meaningless emotion.    

The degree of misery that the lost, tormented souls with Alzheimer’s Disease feel, must depend on the emotional themes of their lives; simply speaking, whether the mug of life if half full or half empty.  Mum has always been nervous and insecure. An emotional orphan, her father died in the Battle of the Somme when she was just two years old.  Her mother Daisy, worked all hours in the fish and chip shop so that she and her daughter would survive; not only survive but escape the threat of poverty and starvation.   She succeeded, but at a cost. With no siblings and few friends, just busy adults, mum always felt in the way and grew up needy for attention, unable to tolerate her own company for very long and very sensitive to being ignored.  Like Daisy, but in an emotional rather than a financial sense, she has had to focus all her energies on survival.  Mum has always been self-centred, a lonely princess, who never really understood other people. Friends, husbands, children had to be there for her.  Without their support and solicitude, she was desperate; she couldn’t survive. 

With widowhood and ageing,  these traits have been concentrated until with the loss of meaning, her emotional life has become a pure essence of anxiety and grievance.  There is no peace and joy,  just a fretful restlessness.  My brother and I used to joke that the only satisfaction she had in life was when she had a justifiable grievance against somebody, but now even that has gone.  She feels the grievance, but without knowing why, she cannot feel justified.   Any attempts to help her, to make her comfortable, to satisfy her demands, can never be enough because they can’t assuage this fundamental grievance.  Life for mum, has not been fair, even the good bits.  Ron, her second husband, was good to her and they were happy together, but theirs’ was an exclusive marriage; two lonely children who shored themselves up against the ineptitude and perceived exploitation of others.  She was an excellent needlewoman, she made wonderful skirts, waistcoats, suits, even hats, but she kept them all to herself.  She was too distrusting of others to be generous.  But Ron let her down in the end and died, fulfilling the prophecy that people would not be there for her. The real tragedy for mum, now, is that while there is life, there is dissatisfaction.  Left to her own emotional imperatives, she doesn’t know what to do except to make demands. 

So, is there anything more that can be done?  Mum now has twenty-four hour care from a local company of private carers.  They are very good to her.  They respond to her slightest whim with infinite patience.  She has the command of a dowager, but nothing is ever good enough.  In her last essential loneliness, she is intolerant and inconsolable.  She is desperate for rescue, but nobody can rescue her from her own persecution.    

I live close to her now and look after her. I am the one to whom she looks to sort it all out.  I feel that I am expected to make up for all the accumulated unfairness of her life.   It was ever thus.  And of course, because her expectations of me are so high,  I am the one who must inevitably let her down the worst. How ever hard I try, it will never be enough and my failure just adds to the pile of  disappointment and grievance. She is hard to love, and there are times when she exasperates me, but I do love her.  I am there for her and promise her every day I will remain so.  I suppose I see aspects of me in her.  I understand her desperation.  I feel it and cannot walk away, but neither can I submit to her needs. 

The situation is changing week by week and I am learning on the hoof.  I have come to the conclusion that it does not help her for me to just respond to the unending litany of demands.  She will never be satisfied.  She now has the mental age of an infant; all emotion and no capacity to understand.  She must be reassured with cuddles.  She must be stroked, her back rubbed, her hands held.  Physical communication is, I feel, so much more important than words; she doesn’t understand the meaning of words.  They can’t be trusted. 

She must be distracted.  Her mental environment must be changed; a walk into the kitchen to look in the cupboards,  standing on the balcony, reciting familiar poems, singing songs,  preparing and eating a meal together, even going out into the garden in a wheelchair. She may not understand, but she will feel the breeze, smell the trees, taste something nice, feel in some way connected.  As cognitions fade, senses, emotions are enhanced.  She is exquisitely sensitive to the timbre of others’ moods.  By doing things with her, however frail and querulous she is, she will sense the relaxation and pleasure in me instead of tension and exasperation. Soon the light will go out.  My hope is for a fading and dimming to extinction and not a restless flickering and guttering. 

‘Please, please mum,  do go gentle into that goodnight!’

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