The story continues….Do keep up!

It was pointed out to me by a fellow member of the Alzheimer’s Society forum that my last instalment regarding mum concluded with the diagnosis of Mild Cognitive Impairment.  Since then I have been somewhat remiss about updating her story, therefore bringing into question the validity of this blog’s title.  I can assure you that now Mum Has Dementia but as you can imagine, it took us another lengthy period of time to get from the tentative and somewhat vague label of Mild Cognitive Impairment to the dizzy heights of a full blown Alzheimer’s diagnosis.  Are you sitting comfortably?  Then I’ll begin…

The issue with mum was that her presentation was so unusual.  She was young but had no family history of dementia (some of the early-onset nasties have a hereditary component – that good news just keeps piling up) and there was no history of alcohol or drug abuse, no mental illness, no previous stroke or indicators for vascular dementia, nothing that would suggest Alzheimer’s or indeed any other widely recognisable cause for her symptoms.  And her symptoms themselves were odd.  I like a nice tidy diagnostic set of ‘presenting complaints’ in my working life: doctor makes diagnosis, patient gets diagnosis, everyone happy.  But with mum we didn’t have the short-term memory loss that I’d assumed would occur, neither was she confused about where she’d left things, how to get about or who people were – it wasn’t your “Knickers in the fridge” scenario.  Her loss of verbal fluency coupled with the change in personality were our only clues until the MCI diagnosis at least pointed us in the right direction.  So, armed with our new, privately acquired diagnostic label we swung into action, started mum on Donepezil (Aricept) and sat back to watch her improve.  Obviously I knew that current Alzheimer’s drugs are unlikely to bring about an improvement in symptoms – the best that can be hoped for is a stabilising clinical picture – but this would be a start.  Dad had a said a few months previously that if things remained the same he could just about cope (it is again testament to the amazing resilience of my father that since that time, things have deteriorated significantly and he is still coping admirably).

The psychiatrist mum had seen privately had suggested she start an antidepressant (Sertraline) immediately.  At the time I was concerned that this seemed a knee-jerk response.  In fact I may have had a rant along the lines of “Totally unacceptable… Continual misdiagnosis…. Assuming everything is depression when patently isn’t depression…. Bunch of jokers… Omnishambles….” etc etc.  This rant was contained within my immediate household and on the phone to my sister because obviously one doesn’t like to cause a fuss.  My main concern was that a label of depression might be too convenient and would perhaps discourage further investigation but with hindsight I can see that starting an antidepressant  was a perfectly reasonable thing to do.  It was possible that depression was causing at least some of her symptoms and a trial of medication was a sensible way to exclude this.  The team continued to investigate her appropriately (and expensively) and when they came up with the diagnosis of MCI a few months later there seemed little need to stop the antidepressant.  What dad had not told us was that prior to the Sertraline mum had been increasingly sulky at home; angry and frustrated with his attempts to help and also hurt by the implication that something was wrong with her (anyone who has experience with dementia will be all too familiar with this scenario I’m sure).  Since starting the Sertraline she had been calmer and less cantankerous with dad and she genuinely seemed to be untroubled by her other symptoms.  Clearly one doesn’t medicate in order to make a carer’s life easier but if it was keeping her happy as well as improving the situation for dad then it seemed churlish to stop.

So, whilst the Sertraline seemed to be doing sterling work, Donepezil was the proverbial chocolate teapot.  Things became worse.  The one advantage of having a diagnosis was that we had something definitive to tell people.  My sister and I were under the impression that dad was sharing this updated information with their close friends.  He wasn’t.  He was still maintaining the stoic and breezy “Yes!!  Everything’s FINE!!” mantra that many people adopt when the shadow of mental illness steals into their life.  Personally I found it useful to have something to tell my own friends who were all completely aware that there was trouble at mill but it was difficult to explain the details of a Mild Cognitive Impairment diagnosis when what people really wanted to know was ‘Does she have dementia?’.  I generally answered the direct question with ‘Not yet’.  And on we lurched.  We all felt a little happier that we had managed to persuade the lumbering health service into providing a diagnosis and treatment (albeit through private means) and we were told that mum should expect a  follow-up visit from the NHS memory clinic in the next few months.  This was obviously something to really look forward to seeing as they had been so mightily effective the first time.

Mum had two more visits from the memory team over the course of the following eighteen months.  She continued to deteriorate and decisions had to be made regarding all sorts of safety issues (childcare, driving etc) with no support from any outside agency.  Because we only had an MCI diagnosis we had no clear guidance as to what mum could or couldn’t do.  The DVLA for example, accept that many people with MCI can still drive, so we had no mandate to stop her despite a general sense of foreboding every time we saw her get in a car (see Driving us Mental – Dementia behind the wheel).  We were struggling to take proactive steps in any direction.  My sister was determined to keep mum’s brain as active as she could, believing the ‘use it or lose it’ adage.  We tried to persuade her to do crosswords, sudoku, read articles in the paper and tell us about them, to knit, to cook, anything to keep those synapses firing – but mum was just not interested and it started to feel a bit mean to be forcing her into productive activities which only led to frustration (ours more than hers).

During this period of inertia I attended a local GP educational meeting about dementia and was staggered at the variation in levels of service provided by memory clinics.  The clinic serving the area where I worked had a comprehensive diagnostic service where patients were seen by a consultant psychiatrist with a special interest in dementia and a clinical psychologist at their first appointment (a two hour appointment – TWO HOURS!!).  If there was doubt about the diagnosis (if the patient was young with no family history as is the case with mum) they would automatically be referred to a neurologist for a second opinion.  Once a dementia diagnosis was confirmed the patient would be offered regular follow up with the memory clinic but there were also weekly or monthly activities for patients and carers to help improve memory function.  These sessions were run by the psychologists and were structured activity classes similar to the type of physical rehabilitation one may be offered after a heart attack or stroke. The team also ran regular carers support groups and drop-in clinics where carers and patients could attend with queries regarding aspects of their care at any time.  Whilst I’m sure that a positive spin was being put on the level of service for the benefit of the listening GPs I was left in no doubt that the standard of care mum would have received had she been living in my health locality would have been far superior to what we had experienced.  On the back of this I wrote to mum’s GP requesting that her care be transferred – geographically it made little difference, she would be attending clinics near both mine and my father’s place of work, I knew the consultants involved and most significantly I knew that she would be seen by a doctor at least one or twice a year as opposed to our current experience; the continued absence of anyone with a medical degree.  Other than me.

However, events somewhat overtook us.  At around the same time mum had another follow up appointment with her local team, again at home, again the same two kindly faces but this time she had a repeat scan booked (it having been two years since the first).  I had an inkling that the results may be different this time around so again I booked time off to be present when they were announced.  The day dawned and the setting was similar; a bit of small talk, cups of tea and then the killer blow, delivered by a nurse so softly spoken we all had to lean in and scrunch up our faces with the effort to hear her joyful words: “Global atrophy consistent with Alzheimer’s…. Disease progression likely to continue at the same trajectory… In a couple of years when she’s in a nursing home… etc etc”.  It came as absolutely no surprise to me but my dad looked like he’d been slapped.  I think that right up until that moment there had been no tangible evidence of dementia, no blood test coming back positive, nothing on the previous scan – and he had been desperately hoping that perhaps we’d all got it wrong.  Now faced with the hard radiological facts he was knocked sideways and all sorts of new possibilities reared their ugly heads, not least that there was a significant chance of mum needing residential care by the time she was 65 years old.

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