My Mum, Dementia and the family

This is a very rough unhoned piece that I wanted to publish in its own rawness so please forgive me if any splinters of literary clumsiness cause discomfort. I have a notebook full of notes on my feelings from one afternoon in a coffee shop while I was waiting for visiting hours to start to see my Mum during one of her stays in hospital and try to give my Dad a break from his vigil at her bedside.

The hardest part of any story is knowing where to start, how to start and what the context of that story should be so here goes.

There are some aspects of human life that are inevitable and have been given euphemisms to lighten or disguise the true depth of their reality.   At one end of life’s’ time prism pregnant can be ‘in the club’ while at the other end death is referred to as ‘passing on’, ‘passing away’ or as I have noticed creeping into everyday usage just ‘passed’.  Now I am not sure if this last reference to death and dying is meant to be ‘passed’ or ‘past’.  Regardless, these euphemisms cover that cold reality that someone has died.

So far in my experience there is not really a euphemism for dementia or Alzheimer’s that I have encountered.  Most families have one relative that is referred to as ‘dotty aunty’ or ‘nutty uncle’.  These references may have been derived from eccentric dancing at a family reunion, suffering from occasional bouts of forgetfulness or just saying the correct thing at the wrong time.

Getting to the core of this story, stripped bare of any politeness and veils of nicety; my Mum had dementia.

Just like the paragraph of questions at the start of this piece have to repeat those very same questions.  How did it start? Why did it start? When did it start?  All questions that rattled around my mind every time I saw my Mum, spoke to her on the phone or watched her ‘good guy’ Dad look after her with a love and care sprung from 60 years of marriage.

Being the closest family member to my geographically and I would hope to think emotionally as well my wife and I were witnesses to Mum’s gradual and inexorable deterioration along the journey with a predetermined destination but no real timetable.  Our observations, and I don’t want that to sound aloof or dispassionate but that is what they were, gained extra clarity by the fact that my wife is a psychologist in the care sector with specialist knowledge of looking after people of all ages with dementia.

I say ‘closest emotionally’ because that is the way it is.  I am the youngest of three brothers of which there are only two surviving at the time of writing.  My middle brother, the one who was always able to listen and provide good counsel or have a good rational discussion with, died prematurely in late 2012.  That is one tragedy that no parent should ever have to go through; to outlive their any of their children.  In some ways that was more tragic than the onset of dementia that is so often referred to as a condition that takes away the person but leaves their body behind. 

All through the progression of this condition my Dad could not allow himself to accept the fact that Mum had dementia and it is only two years on from her death that he is able to say ‘she wasn’t right for years’ and ‘I think her problems started when she had that bad fall about fifteen years ago’.  Perhaps the bad fall was a symptom that dementia had already started to set in rather than the fall being the cause of the start of dementia?  I think it is the former.

During the last few years of my Mum’s life what made my wife and I closer to my parents, especially after my middle brother died was the fact that my elder brother very rarely came to see them.  Their regular visits numbered three at most four a year.  This is despite their circumstances of being retired and seemingly having time and flexibility on their side which we in work do not.  Yes, the round trip is about two hundred miles for them but what galled my parents the most was that my brother and his wife could travel a hundred to a hundred and fifty mile round trip in a day just for a walk around a remote village and a bite to eat but not go the extra fifty miles to make a visit.   Whenever I pressed my brother to come and see my parents there was always an excuse, never a reason or a curt ‘to be discussed’ comment pre-empting a complete change of subject.

That is the family situation which has survived Mum and now back to dementia.

Mum was always an anxious person but that may have been a character trait rather than a symptom of dementia.  What did happen was that this anxiety became exaggerated to the point that if Mum did not get her own way or something went wrong then her anxiety would show through tears of stress and anger in her eyes, her fists would clench so tightly the knuckle would go white with rage and quite often there would be a rush to the bathroom.  That was OK while Mum was mobile but became almost impossible when she was either bed bound or chair bound.

I think also in her early life with Dad Mum got spoilt and as one relative said at her funeral ‘Your Dad always carried an umbrella for your Mum’.  I am sure this trait of being ‘spoilt’ also manifested itself through her progressive dementia and as all the good books on the subject advise ‘Avoid confrontation’.  I am almost certain that Mum played this card a bit with Dad at some stage of her dementia and his response was ‘It’s easier to take the line of least resistance’.  His life, from our viewpoint of being on the outside looking in, was absolute hell, especially towards the end before she went into hospital for her final stay.

No sooner would dad sit down to have his lunch in peace in the kitchen then Mum would call out for him.  In the later stages this was something beyond her control as she could only ever cope with everything remaining the same and that included being able to see Dad in the living room.  He never had a chance to finish a meal at one sitting.  He could never really go out of the flat for some quality time.  And when he did get away with me just to do some shopping and have a coffee while my wife sat with Mum he would then become anxious and restless and want to get back home to make sure she was alright.  Somewhere along the timeline her anxiety transferred to him to make him behave like that and it was tragic to watch his life being subsumed into her condition.

Mum did have to be admitted to hospital with a broken hip.  She was admitted on an emergency basis and into a public ward.  This caused her great anxiety and so Dad had her transferred to a private ward where she stayed for about two weeks.  We hoped that with Mum in hospital that Dad would grab some ‘me time’ for himself and assumed he was doing so until one day at work when I received a phone call from the hospital.

They told me that they were having a bit of a problem with Dad as he was turning up at nine in the morning and staying with Mum through too late in the evening.  I met him at the hospital to take him home one evening and asked ‘why?’.

He said that he couldn’t leave Mum alone as every time he got up to leave she would become highly distressed and call for him to stay and he couldn’t bear to leave her alone.  We told him and the medical team told him repeatedly that Mum would get stressed when he left her but she would forget all about it in a few minutes and then drift off to sleep but no, Dad would not accept this and continued his vigil for up to twelve hours a day until Mum was discharged. Dad also reckoned that despite the cost of the room that Mum was not being looked after properly, was not getting any better and he would be best staying to make sure the hospital looked after her.

On discharge the social services set up a care package of three visits a day to Mum to take some of the pressure off of Dad. Everyone was happy or so it seemed until one day I asked casually how the care support was working out?

Dad had cancelled all of the visits as he felt they were not looking after Mum as well as he could and that she was embarrassed about having to be looked after by strangers.  We couldn’t win and left Dad to look after Mum as best he could.  All the rest of the family could do was stand back and wait for a catastrophe which came in October 2014.

My sister in law, widow of middle brother, was making a visit, noticed that Mum was not too well, had difficulty swallowing, breathing and made Dad call the ambulance service.  Mum was admitted that night.

Dad clung on to the hope that Mum would come home and although that did not look to promising it was decided that Mum could go into a residential care home.  Alas, her condition deteriorated beyond being suitable for that environment and Mum ended her days in hospital.

At the beginning of this piece I recognised that the hardest part of any story is knowing the where, what and how of starting to write.  At this end of the piece I am not sure I have answered those questions for myself let alone the reader but yes I have answered one; I have started somewhere.