‘Oh Nick, Oh Nick!  Please!  Please!’ 

 ‘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!’

Advertisements