Things have been very chaotic here lately.  M is sleeping for large periods of the day and has become reluctant to go to bed at night.  Whenever she wakes up it is morning and she is expecting breakfast.  She has now lost track of day and night: the fact that is dark makes no difference to her assumption it is time for breakfast.  I have to take responsibility for allowing things to slip on the home front.

This morning has been exciting for a couple of reasons.  By 9.30 M was dressed and looked like a model.  She had chosen a lovely blue blouse and a matching sweater: the sight of her looking so good brought tears to my eyes. KISSS was working – all that hard work of the previous week sorting out her clothes was paying off.  The beam on her face when I opened the bedroom door said it all.  Then a second reason for thinking that we are on the right road on our journey: M warmed to my suggestion for a short shopping expedition.

Once again her performance has been amazing.  Her comittment this morning has been incredible (that is not too strong a word) as she has reached the places that you would think would no longer be attainable for someone in her condition.  She has walked around the centre of our Town without flinching; changed a garment in a high street store;  purchased vegetables in the city centre market.  I had wondered if she would ever reach such heights again.  I am not going to take any credit for this -that would be dangerous- it might just be a good day: only time will tell.

One thing that seems worth trying is to go with M’s shift pattern with one modification.  We need to try to get to bed before midnight.  So we have periods of activity throughout the day; followed by a restorative nap. Except in the evening.  when the musical interlude follows tea.  We then have a sporting chance to get to bed at a reasonable hour.  There may have to be some flexibility today as she may have overdone things.  However, to see her in this mode has given me so much pleasure .

Life with dementia is attainable; it just requires a shift of perspective and flexible working arrangements.

YouTube has been a great mood lifter here for weeks.  On most nights we choose an artist or a Show and sing along for an hour or two.

Last night M mentioned how much her father liked Moonlight Serenade.  We started with the tablet on the dining room table as we ate a late tea, at almost 10 pm.  Then we moved to the lounge where our Smart T V brought us pictures and music from a bygone era for a couple of hours.

We played ‘In the Mood’ several times and that seemed to be prophetic.  Maureen was having the time of her life singing word for word those numbers her dad loved so much.  We even had the occasional slow foxtrot to add to the evening’s entertainment.  Do you know she almost let me lead rather than follow.

Music is a great mood lifter for M but there is more to it than that.  It gave her an opportunity to remember her dad with great fondness.  The stories about him flowed as we selected from his favourite numbers.  It also helped her to see that she is not ‘going mad’ as she often fears and that aspects of her memory are more than intact: her long term memory is excellent.  Ask her to recite the register of her class in High School and you will be amazed.  She can go down the register in alphabetical order with first name and surname.  In fact I wouldn’t be at all surprised if she could recall where her classmates sat and the status of their parents.

I am not sure who will be our focal point tonight.  Perhaps my ability to search on YouTube will not be tested.  What I am sure of is that it is possible to lift mood by all sorts of methods: you just got to get it right on the night.

It wouldn’t be difficult for any reader of this Blog to discern how circumspect I am about the use of medication to treat mild to moderate forms of mental illness.  I have already cited references that support my point of view.  That is nothing new in any form of discourse.  However, my supportive evidence is drawn from personal experience.

There are two strands to my personal experience of mental illness.  Firstly, I have had my share of depression and treatment regimes.  Secondly, I have held a voluntary role as a Facilitator of an Anxiety and Depression Support Group.  I would contend that the environment has been the significant factor in both aspects of my experience, rather than  chemical imbalance.

In my own case it was the terminal illness of a close family member and recovering from bilateral hip replacement that triggered a serious depressive episode.  The stories we heard at our Support Group had ‘tipping points’ where domestic or professional environment led to discomfort and mental health issues.  Chemical imbalance may have been present but certainly not a cause of the condition: possibly an effect.  The research of Kirsch has disputed the ‘evidence’ on which the medication has been marketed.  He has also asserted that the tablets have little more impact than a sugar coated pill.  It is time to move on: if I haven’t made my point now I never will.

Talking therapies are seen as a route out of poor mental health: particularly when the condition is mild to moderate.  I have been the beneficiary of this regime and been helped to ‘think my way out’ of a life time on antidepressants.  Again,  with our Support Group we saw many examples of adults who once they learned that the problem was environmental  things began to change.  Put simply if the job was causing the problem do something about it; change you work environment or get out.  The same with domestic issues: if the issue was about relationships -change the dynamics or kick him out.  Where does this leave us when dementia is involved you might ask?  I would argue that there is a need for a dual approach with both parties needing talking therapies: the carer and the cared for one.

I have to return to personal experience to make my point.  It is a struggle here at the moment, dementia is a dynamic condition and things are on the move.  If I don’t shape up M will be lost as she tries to sort out what is happening to her. In short, no one really knows what is going on and why things appear to be changing so rapidly.  For example what is the ‘sofa business’ all about and why is she mixing up night and day so readily?  My only solution is to ponder with other people from all walks of life on the matter.  Some of my network are neighbours, others wear a professional hat.  This is needed 24/7 and we have an excellent help line in this area where great support from Night Owls has been a godsend  over the last few days.

What about the person with dementia you might ask?  Are there services that they can access to help them make sense of their condition?  My simple answer is I don’t know but that will not be my position for very long.  One thing for sure if M doesn’t want to touch such opportunities with a barge pole there will be no pressure from yours truly.  The other thing I would put money on she won’t touch the antidepressants or the anti anxiety medication, she is as aware of the shortcoming and dangers of that stuff as I am.  She has seen the evidence lying next to her in bed.

Postscript

M has just woken up very frightened worried about a dream that has become her reality.  She needed a hug a bit of Emotional Freedom Technique tapping and the promise of a cup of tea.  It’s a struggle to get her to take her stroke prevention medication.  Imagine the difficulty of trying to convince her to take the other stuff and the side effects.

I have already mentioned that M’s diagnosis of Vascular Dementia led to discharge from the Memory Service.  To a certain extent we have felt cast adrift: left to find our own way on our journey with dementia.  Only this morning it sunk in the difficult position we may have been in.  Fortunately, M’s GP is excellent and his care has been first class.  He is now the focal point for the monitoring of M’s overall condition.  To a large extent M has had a very lucky escape as she is outside mental health provision: let me explain.

Early on in the assessment of M’s condition Care Coordinators from the Memory Service said they could help  if she felt low in her mood.  They told her it was very understandable that her mood might be low with the things that had recently happened in her life.  Their onslaught, and that is what it seemed, continued for some time.   The deal on the table was quite clear take the tablets and you can stay on the books – if not we are off.  Such behaviour is insidious and patently dishonest.

The efficacy of antidepressants for mild to moderate depression has been called into question by Kirsch and others.  In fact the evidence provided by Kirsch was so strong that NICE changed their guidelines on the prescription of antidepressants.  There has also been widespread media attention on the over prescription of antidepressants over the last few years . Anyone who looks at the figures would be concerned that there are either fundamental problems with the mental state of the nation or the prescription pad is being overused.

Any witness to the behaviour of the Care Coordinators on that day would have been concerned.  Firstly, by the assertion that they could help with low mood.  Secondly, by absence of any diagnostic technique.  They presented like a Sales Team who did not even understand their product or its potential to create havoc for a patient with dementia.  The court is out on how medication is metabolised when dementia is present.  I also recall research that urges caution when introducing a cocktail of drugs for patients with dementia.

Why all this focus on mental health you might ask?  Quite simply because that is the umbrella under which dementia is placed.  That is where we are going wrong in my opinion: dementia is not about mood it is about brain damage.  So we have to get through a maze where staff are pushing medication that simply does not work.  In fact it may well do harm.

We have to find our way through the maze if we are to deal with changes in M’s presentation.  We could seek a mental health review of her condition.  What would be the point?  M has dementia and seeing it as a mental health condition is misleading and totally unhelpful.  Depression and anxiety are a natural reaction to her condition: they are not evidence of mental illness.  The most sensible approach to changes in her presentation is a review of her environment.  In fact the focus needs to change from her to me.

Questions need to be raised about my ability to cope with changes in M’s presentation.  The issue is how can I create a supportive environment as her dementia progresses?  Do I have the skills, capacity and resources to cope as her dementia marches forward at a relentless pace?

Any reader who has followed the posts on this Blog over the last few days would see that M’s presentation is changing.  There are more frequent periods of confusion and ‘acting out of character’.  It is all guesswork but it is important to ponder over the causes of the changes: we have seen the effect.  Buddhism is close to my heart and I am much persuaded by the logic of dependent arising.

Lets take the starting point for M’s diagnosis of dementia: stroke.   We know that she has suffered brain damage resulting in changes to her functional capacity and mental processes.  Dementia as we know is a progressive condition.  I would contend that this is fundamentally different to mental illness which is a response to environment: particularly in the case of mild to moderate depression (Kirsch, Kinderman).  Therefore  the changes that have emerged in M’s presentation in the last few days must have a cause.  I want to explore changes in her environment that may have had such a drastic effect.

Firstly, we have had a very hot spell: the weather has been much warmer than usual.  Heat can lead to exhaustion exacerbating changes in mood and presentation.  Secondly, several new faces have been in our house that have thrown M as she is aware that they are from the past but she can’t really work out where they fit into her life.  Thirdly, she has been ‘packing for home’ on most evenings and has expressed genuine disappointment when she finds herself here the next morning.  Fourthly, she has a vague idea that her birthday is coming up but cannot work out when it actually is.  Fifthly, she had a telephone conversation with her son yesterday, that became like a memory test rather than a supportive interchange.

I would contend that all five environmental changes have led to M’s presentation taking a downward spiral.  More sleep than ever has led to additional confusion when she wakes up and always thinks it is morning and time for breakfast.   My concern now is that viewed through the eyes of Mental Health staff  her mood will be the focus. They may well ignore environmental changes and see medication as the panacea. In my view that would lead us down a very risky path, rather than help us back on the road to a life with dementia.  ‘It is the environment stupid’; comes to mind.  Why on earth place dementia under the umbrella of Mental Health?  That decision does seem plain stupid.

References:

Kirsch, I: The Emperor’s New Drugs – Exploding the Antidepressant Myth (2009)

Kinderman, P: The New Laws of Psycholgy  (2014)

I am up a little earlier at 4.20 am: usually I get up about half an hour later.  The only difference today is that I have had a couple of hours sleep at the most. I managed to return to the marital bed but have just been woken by my wife sitting bolt upright in bed utterly confused.

She doesn’t know where she is and says something about coming through the wrong door and being in an Auction House.  Not wanting to be rude she has to get up as she is expecting her daughter up from down south.  Her only daughter passed away a couple of years ago. She doesn’t want to be rude but she simply has to get on with things.  I announce that I am going for a walk in the garden and she says she is going to join me.  Fortunately, she is a little late in joining me and I manage to put in a call to Social Services to explain what has been happening in the last few hours.

Over the last few days I have found staff on the emergency Social Services number extremely supportive.  So I update the ‘Night Owl’ and seek the best way forward.  Her shift will come to an end shortly after seven.  I have a much longer day in prospect.  Thankfully a carer will be her for three hours shortly after ten.

We discuss calling in the Mental Health Assessment Team and decide that could well be counterproductive.  I agree to hold the fort until our Key Worker is on duty during normal office hours.

One thing for sure after the events of the last few days I need far more support if M is to stay at home.  There is no way anyone can continue to make the input that has been necessary here in the last few days.  This is easy to write but I am sure it will not be quite so easy to accept what lies ahead

My sleep patterns are never the best and early morning wakening is almost a constant feature of my life.  When my sleep is really poor I can drop off at any moment as tiredness is a constant factor.  Tonight I can’t even get to bed as one ‘o’ clock in the morning stares at me from the clock on the mantel peace.  M has slept on the sofa for much of the afternoon and now wants to spend the night in ‘the place she always sleeps’.

Tonight’s behaviour is a first and I have no idea what has caused such confusion.  My attempts to persuade M to join me in our marital bed have failed and it is unsafe to leave her unattended in her new sleeping quarters.  It is very likely that she would wake up and become very frightened believing I had left her.  Looks like I had better check her out as I hear noises downstairs.  More later ….

She has just woken and M thinks it is morning and asked me if I have had a good night’s sleep..  I need to be with her to try to steer her to bed. Even more later perhaps under a further post.

I carry on this post for good reason.

M decided to go back to be to ‘try to get more sleep’.   I found the bedroom door closed and gently got into bed.  M let out the loudest scream I have ever heard and said she didn’t know who was getting into bed with her.  Those who know her well understand where this fear of men has come from: it is not from me.

I am advised that therapy is out of the question as dementia would make such work impossible.  I think it will be difficult for me to sleep now as I am still upset from this incident.  It brings sharply into focus a warning from the Clinical Psychologist from the Stroke Team: to be very careful in case she mistakes me for someone else.  M is paying the price for pretending that bad things did not happen in her life and failing to deal with them.  This fear of men will haunt her for the rest of her life and it is hardly surprising: it is quite understandable if you know what happened to her in a previous relationship..

M has been discharged from the Memory Clinic many months ago with advice to let her G P know of changes in her presentation.  In some ways it is a relief not to have to watch M undergo more testing.  Any observer would be puzzled by the tests and the point of scoring individuals on a routine set of questions.  Counting back from a 100 in 7’s may have its place in Primary School.  Knowing the time, date and month has less significance when you are retired.  The point I am making is that the tests are culturally loaded and relatively pointless.   Surely the important measure of deterioration is functional capacity.

M has lost all concept of time, place and person in the last few months .  She often gets lost in the house and is not sure where I am; even when I am watching television and she has just left the room where I am sitting.  Making any contribution to the preparation of meals is a struggle and seeing her try to make a sandwich brings tears to my eyes.  More recently she makes a cup of tea loses where she has put it down and has to make another.  I could go on but I hope I have made my point: there is significant decline in her functional capacity.

M retains her considerable intellect when she is lucid.  She still has the capacity to talk a good game and put on a show when required.  She slips into the ‘hostess mode’ when visitors are present: particularly family members.  While others are here she will keep going and collapse for days after they have gone: relieved that the job is done.

If the ‘cover up’ is successful they leave completely in the dark about how she really is.  Some remain in denial and see what they are already convinced of: that she is not so bad and a tired carer is painting a jaundiced picture of things.  I wonder if they ever ponder on what could possibly be my motivation for doing that?

Perhaps the only solution is to let any doubters take over for a week or two by themselves.  This would give me a break and help them to see the reality of M’s current presentation.   They would be shocked by their experience and perhaps show a little more compassion for someone who is here  24/7; respecting his marriage vows and showing his unconditional love for his wife.

Post Script

I left M washing up in the kitchen whilst I typed the above post.  Her activities have extended to packing to go home again.  The white cupboard in the Utility Room has been emptied of her personal belongings.  She has found a birthday card that she believes one of the carers has left for her.  It was sent by her daughter who died a few years ago.  Her conversation is about making sure we do not leave any of our things in her Aunty’s house.  We have now lived in this house for 15 years.

I am not sure how she would score on a Memory Test but her periods and levels of confusion are growing at a pace I did not anticipate.  My first task in the morning will be to put all her packing back where it belongs.  Another early start will be needed in the morning.

I made a reference at the beginning of this Blog to the teams of people that I have at my disposal.  The haunting words on diagnosis from the Consultant at the Memory Clinic: ‘You will have to get used to your new reality.’ convinced me to spring into action.  If we were going to have a life with dementia I would need lots of help to fathom out this new reality. As time has gone by I  have changed my formations but have been eager to recruit allies in our struggle to cope with dementia.

I suppose I am fortunate that I have had an unusual educational background.  Leaving school at 15 without taking any examinations I  gained a Masters Degree in Continuing Education and the Management of Change at Warwick University in my mid 40’s.  Yet I have no first degree: just a host of professional qualifications.  This has involved attendance, of one sort or another, at three Universities.

In my professional career despite working for the same Local Authority for 25 years I have had a broad range of roles. Central to all my positions has been team building: my track record is good in that area.  So building teams is nothing new to me. So once the advice to accept the new reality had been given I began a team building exercise.

I have groups of people far and widespread who can assist in all sorts of situations.  I have academics who can point me in the direction of research and will help me to review my thinking on matters.  I have people close by who I can pop round to see to mull over matters.   There are others with professional hats to wear who ply their trade in the dementia business.  I think I know my way around the maze a little better than I did 12 months ago.

I would advise anyone who is faced with this dreadful condition to recruit, recruit and recruit.  Just to give an glimmer of the availability on hand for us.  Last week a Professor of Clinical Psychology interrupted his month in Bali to send me a reference I a may have missed.  In the last week someone I had never made contact with before started acting as my mentor in the development of this blog.

Dementia is a time when you find out who your real friends and allies are. When someone you have never met interrupts their holiday in Bali to send you a message and another new contact is prepared to keep an eye on your blog then you know that your team building skills are more needed than ever in your life.

Post Script.

Just had a knock on the door  from a neighbour to let me know that M is off on her travels.  My hailing of her has made no difference as she indicates she was unsure where I was; so she is off somewhere.  I don’t know how long she will be gone for.  However, I know if I get concerned  members of my Search Team will assist in bringing her back home safe and sound.

There is little doubt that having dementia in the household is a life changer.  Dementia is a progressive condition and your environment takes on a dynamic nature: constant change becomes an inescapable feature of your life.  Planning is problematic as to put it bluntly you never know what you are going to get.  An analogy based on personal experience may help to elaborate the point I seek to make.

Following early retirement from a career in the management of adult education I began to work for an Agency that provided Supply Teachers to local secondary schools.  Work was allocated by telephone: a call would be received in the morning to send me on my way to all corners of the County. On arrival at the chosen school for the day I would be handed a timetable detailing the subject, and the room, for each lesson.  If I was lucky I would be given details of how to contact Senior Staff within the school.

On arrival at my classroom there would generally be some instructions about the lesson I was expected to deliver.  In some situations I would be eased into my new surroundings by a supportive Head of Department or his colleagues. On other occasions I would be left to get on with it.  Sometimes I would arrive at my classroom and there was nothing apart from a room full of teenagers.

The sort of day that lay ahead depended on the school, the support available, the pupils and me.  Some schools were welcoming to Supply Teachers others happily used them to take the classes other teachers had long given up. Long serving staff were relieved that someone else had to ‘take it’ for the day.

There are broad similarities between my experience as a supply teacher and my role as a carer for M.  First of all I have no idea what I am going to get on the day: uncertainty is dominant in my life.  Secondly, it is possible that M will be confused about who I am.  Thirdly, there is no scheme of work, lesson plan or resources for the day – I am on my own.

Once i understood the context of supply teaching I developed a survival strategy.  Without something in the brief case I would be likely to sink rather than swim.  Quite simply I had to accept the situation I was in and have a survival strategy: I had to prioritise and plan how to get through the day unscathed.    It is the same with dementia.

This morning it is possible that M will be unsure who I am.  She may not know where she is and may talk about wanting to go home.  It is likely that she will reflect on how much she misses her family: particularly her parents.  All difficult challenges that I could do without first thing in the morning.  There is no lesson plan, scheme of work or Head of Department to call upon – it is simply down to me.  The only difference we have a degree of control over our environment rather that the National Curriculum to contend with.

Our priority has to be to attempt to have a life with dementia.  There is little point in wallowing in grief because all dementia will do is progress; it won’t go away.  So where is the blessing in all of this you might ask?  Quite simply dementia forces you to focus on the important things in life.  You have to sort out the clutter in your life or you will go under.  It soon becomes apparent who your real friends are as the ‘hangers on’ soon fall by the wayside and drift out of your life.  My acronym of KISSS has to be my guiding light and getting rid of all sorts of clutter has to be a high priority.

E one of my Buddhist friends put it like this: ‘try to  see it as an opportunity to practice patience and give unconditional love’.  What a challenge and what a blessing.  However, not an approach I would recommend to Supply Teachers!