M is 77 in two weeks and I have been exploring the best way to handle celebrations.  I have to admit this afternoon that I strayed from my KISSS approach to dementia (see previous post).  In the warmth of the afternoon I got carried away by the fairies considering that a Garden Party might be the panacea.  To be fair to myself moving away from KISSS can be explained quite simply as an attempt to keep family members onside.

There has been misunderstanding and objections to my suggestions to keep things quiet on M’s big day.  One family member thought I had suggested not buying presents or sending cards.  Another thought I was depriving M from seeing her grandchildren.   My  focus was on letting M birthday pass in a quiet manner.  Events this afternoon convince me that my hunch is correct and reflects M’s wishes.

I explored using the garden for a small birthday gathering and it is clear that M wants the day to pass quietly.  She suggested that the two of us sitting in the garden would be her preference.  So I am now left with the difficult task of trying to ensure that she gets the birthday she wants.  This will be no simple task as most mothers are prepared to accommodate their children’s needs.  That is why M continues to shelter her family from her condition and puts on a good show when they visit.  Why on earth would someone who has protected her children all her life want to worry them about anything?

So my instinct to KISSS away Maureen’s birthday has to be my maxim.  After all that is what she wants.

Probably not sensible to suggest an alternative plan I had: to hire a barge for the day and invite a crowd.  M might just go for that one to please her family.

A few years ago a colleague and I decided on KISS as a suitable  acronym to define the approach to our work.  R and I were working together to facilitate an Anxiety and Depression Support Group at our Medical Centre.   His experience in the army and mine in adult education led to an interesting approach to our work.  I know that many patients found our sessions helpful and our Medical Centre found our approach to our work challenging.  It was a very brave undertakinG their behalf to let such an alliance loose on their premises.

This morning KISSS has surfaced as pragmatic  way to approach dementia.  I have complicated things,yet again, by asking another neighbour to pop in and chat with M.  They seemed to have a good time together, until after her departure when M tried to place her visitor.  It soon became clear that M was totally confused about our neighbour.  She thought she was a friend from long ago in another city.  She criticised me for not telling her her the woman had moved into this town.  When I reflect all I have done is repeat a mistake I made yesterday by creating confusion and reminding M of her poor memory

You learn as you go along with dementia.  Clear deterioration is taking place here as M’s short term memory is now extremely poor.   I have just seen her struggle to make a cup of coffee; forget she has made it and repeat the process.   It is possible that this is being caused by: further deterioration; a dip: tiredness: or just a bad time of day -only time will tell.  In the mean time I have to KISSS it or pay the price and  deal with another challenging day like yesterday became.

No prizes for guessing the additional S in the acronym: it is for SHORT.

If you lose your sense of humour when dementia is in your household then you have made serious mistake.  So I hope you will forgive me for sharing glimpses of the funny side of dementia.

Early on following stroke M posed an interesting question when we were having a cuddle. She suddenly sat bolt upright in bed and asked: ‘I can’t still get pregnant can I ?’  Now most males will have had interesting questions posed to them at all time of their lives and as this goes it was a show stopper.  With combined ages of 140 and both having had surgery that would make such matters impossible I was stumped for words.  A good friend of mine, who has recently passed away, suggested and appropriate response: ‘the only way to find out is to keep trying’.

Only yesterday M said she was aware she may have upset me with something she said some time ago.  Despite a very poor short term memory she recalled saying something along the lines of: ‘You are only saying we are married so you can get into bed with me.  I want to see proof where is the marriage certificate and the photos?’  I still got into bed with her on the night in question as she declined my offer to sleep in a separate room.

Two wedding photos are now attached to a mirror in the hall and others are about the house as a reminder about my status here.  However, M often talks to me about P as if I am someones else.  You just have to laugh sometimes and use humor to help when you are living with dementia .

Yesterday was a challenging day here  to put it mildly.  The morning went relatively well and I managed to move a few things forward.  An early morning chat with my supportive local chemist helped me to put one or two things into context.  Y had been away for a few days and I had missed her analytical understanding of the dementia.  She is always generous with her time and her empathy and warmth is always a good start to the day.  Y has helped me to place dementia as brain injury rather than link the condition with mental health.  We have also arrived at a position that M is not ill she is recovering from stroke.

I moved on from my conversation with Y wondering if my efforts to sort out the clothing crisis were ill conceived.  Perhaps once again my understanding of M’s reality was rather naive: clothes in themselves are not the issue they are a vehicle for expressing some other emotion.  Nevertheless, perhaps having less choice and throwing away unwanted items would be good for both of us.  Y helped me to see that endless searches for underwear were probably a waste of time and repair was more likely to be a viable solution to the bra crisis than replacement: a small amount of cotton and a skilled seamstress could double the current amount of support available.

On return from an positive exploration with local stores about returning unwanted garments all seemed well.  M and a new carer were chatting away: getting on like a house on fire.  An hour later following an unintentional doze I found M upstairs completely disorientated.  I am not sure how long she had been in that state but long enough to let the vegetables I was boiling, to go with fish pie that was in the oven to burn.

M’s behaviour was unlike anything I could recall.  Her disorientation was significant with confusion over time and real concern about about our safety with the windows open.  I tried, and failed, to distract her with encouragement to sit at the dining table as food was about to be served.  She was reluctant to sit at her normal place and sat on a stool at the opposite side of the table.  A strange atmosphere clouded what is normal a pleasant occasion as we sit down and eat together.  I wondered if the considerable heat of the day was having an impact on M’s presentation and kept the cool drinks flowing.

I was so concerned about M’s presentation that I asked a neighbour to pop round and check my take on things.  M showed some confusion about who K was, despite talking to her over the fence a couple of days ago.  Things did not go well as K asked M if she remembered her.  M stormed off with recriminations about an occasion when she didn’t remember things still being used against her.  She banged the door; fled into the lounge and lay down on the sofa.  A hour or so later she decided to go for a walk and made it clear she didn’t want my company.

Whilst M slept I managed to speak to her G P about my concerns and a home visit was suggested which I welcomed.  Unfortunately, the length of her walk meant that his plans were frustrated and I was advised to take her to Accident and Emergency if I continued to be concerned.  The possibilities of TIA’s had crossed my mind and hospital might be the best place to try to find out what was going on.

I have to break off in writing now as M  has just woken and is moaning.  I have massaged her cold left foot and given her a drink of water.  She is not clear who I am and is talking about things I have said and is not attributing them to me.  I have to keep a close by after the vents of yesterday.  More later I hope …….so will add and edit later.

i am back after a short comforting 15 minutes with M.  In some ways this is the best place to be as I am only a partition wall away from her head so I can pick up signs of distress and try to provide an immediate response.  However, all of this is akin to risk management of trying to work out the best way of spending my time.  So I have to try to make some sense out of yesterday to ‘Be Prepared’ for today.

I have no idea what is going to happen today or how M will present.  At best I will react to her presentation in an appropriate manner and respect her reality.  A hard task in itself on a hot day with a long shift ahead.  What I simply have to make clear is that she is my sole priority and I am here to meet her needs.  M needs to know that she can depend on me to compensate for the capacities that she no longer has.  My focus has to be on providing the prompts that will help her to enjoy her day.

Although I have no idea what today will bring yesterday gave me an opportunity to welcome a star player back into my support team and make a couple of additional signings.  The season began following stroke and fixtures piled in once dementia became the opponent.  I hope readers will forgive the football analogies: this is an opportunity to play fantasy football as I would have loved career in professional football.  Confession out of the way and I move on.

I have already mentioned that Y was back after a short holiday.  In addition I mentioned K’s unfortunate intervention but that does not mean she is on the transfer list.  Throughout the day i popped round to see K for counsel and her sharp mind helped me at several crisis points, as did M her husbands helpful contribution.  However, the ‘man of the match’ has to go to A who in his first outing tracked M down and brought her back in his car.

Team building is one of my stronger points with positive achievements at that level in my professional career.  One of my strengths has always been to spot talent: recruit the individual concerned and make sure they continue to flourish.  Talent spotting has to be a high priority for us as we have no immediate family less than a couple of hours away so recruiting local talent is critical.  My role is to pick a team for the day that has the skills to respond to Maureen’s presentation.  I have to admit that I have no idea what is going on here for most of the time but I will Be Prepared do my best to continue to put the right team out on the day.

It is possible to argue that stroke has been beneficial for M on one front: it has brought dementia out into the open.  There is no doubt now that M has dementia of one form or another.  It matters not what type of dementia: the important thing is functional capacity and that is declining.

M’s recovery from stroke has been exceptional.  The loss of visual field is the only obvious physical change, nothing else is apparent.  This major implication is where dementia is clear even to those who still stray into denial.  Despite a Consultant telling M that she should surrender her driving licence she still has ambitions to return to sitting behind the steering wheel.  M shows her inability to retain information by suggesting that a second opinion might make it possible to sit a test to get her licence back.

Stroke is now a complicating factor alongside M’s dementia.  She is due to go to the Stroke Clinic with  a month or so and Cardiac Clinic later in the year.  Such arrangements are standard procedure following stroke.  However, when dementia is prevalent they complicate things without any potential benefit.  It seem to me there is a pragmatic way forward that I will attempt to set in motion this morning.

Attending hospital will distress Maureen with little potential benefit.  Her G P spent a long period in Elderly Medicine and he is the best person to manage her ongoing care.  His intervention following the last visit to the Cardiac Clinic prevented mayhem.

The Locum Consultant suggested blood pressure monitoring 3 times a day for a week: a recipe for increasing M’s.  He failed to take into consideration the patient and the impact of his harsh regime.  Fortunately, M’s G P introduced sanity into monitoring her B P and it is now within acceptable limits.

It seems sensible that once dementia has been diagnosed  it should be the driver in patient monitoring.  Why introduce factors within their care programme that will add to distress and confusion.? Thankfully, I am optimistic M’s G P will agree to  monitor her basic functions.  He always takes into account that M is not just another person attending his Clinic: she has dementia.

I have been out of bed from 2.30 am this morning.  As always, with dementia the elephant in the room, there has been plenty on my mind and clothes sorting to complete.  An hour later and I have a system that is an improvement on the previous set up but is little more than a holding position.  However, it is a basis to move forward and detail is not necessary for blogging purposes this morning.  Something else is on my mind as I sort through the morass of clothes: how did we all miss that dementia was before our eyes well before stroke?

Any perusal through M’ s belongings indicates long standing chaos.  The evidence is so clear: no systems for anything; bits of paper with notes scribbled on;  important documents left in the open, and much more.  This chaos if from a woman who personified order throughout her life: ‘everything has a place and everything has its place’.

So why did we miss what was going on and not spot that fundamental changes were taking place in M’s behaviour?  I have already held me hand up and admitted I backed the ‘wrong horse’.  Making personality change my wager rather than the dodgy bet of dementia.  Extensive cover up on M’s behalf made it difficult for others, particularly those who only saw her occasionally, to spot the downward trend in her functional capacity.   In fact the cover up continues as M is still able to go into the ‘hostess mode’ particularly when family visit.  There were other things that were happening in M’s life that may have led us all down the wrong path.

In fact the five years proceeding stroke would have been sufficient to provoke serious reactions from an Olympic Gold Medalist.  The immediate family situation has been far from calm or simple: premature death; suicide attempts; divorce and remarriage having their impact.  So with so many things going on, and M’s age, it is not surprising that we took our eye off the ball.

On the other hand anyone under the stress that M has been under may have gone out and bought enough clothing to open a high class boutique; with over £200 worth unworn with labels still attached.  Shopping for clothing could have become almost an addiction to help manage stress.  One thing for sure is we will never know when dementia became the prominent thorn in M’s flesh rather than the trials of life life meant that things just got out if hand.

When I ponder over our reluctance to accept that M was suffering from dementia I often think of a dear friend of mine.  She put down changes in her husbands personality to the aging process.  Fortunately, an operation to remove a tumor,  the size of a tennis ball, close to his brain was successful.  He appeared to make a good recovery and returned to work and functioned reasonably well.  His wife struggled to accept how she had missed the signs that something was wrong: she is General Practitioner.

My immediate mission this morning is now clear on the clothing front.  To retain a few things in M’s wardrobe that might just entice her out of her favourite  blue joggers: limited choices might just do the trick.  Now she is down to one bra it might be easier to persuade her to warm to a replacement.

 I keep trying and if something doesn’t work I try something different. 

I think it is hardly contentious to stress the importance of early diagnosis of dementia.  There has recently been a call for the need to pick up early signs of a faltering memory from all shades of the professional and political spectrum.  Any observer might conclude early diagnosis would lead to a positive outcome and the condition would no longer create human misery.  If only that were the case.

I am going to share some personal experiences to elaborate the advantages of early diagnosis.  When you live with someone on a day to day basis you often miss subtle changes in their behaviour.  In the early days I am sure I considered tiredness or stress were behind M’s poor memory and hoped it was a temporary phase in her life.  When she began to lose things and her cognitive capacity continued to diminish I began to become concerned.

We all have times when life feels just too complicated and everything seems to go wrong.  However, when M started to lose prescriptions and medication on a regular basis and no longer seemed able to comprehend how to use the remote control for the TV my concerns began to grow.  I have to confess at this stage of things my reaction was far from helpful.  Communication also became difficult as M never seemed to be able to make her mind up about anything and misunderstandings arose with greater frequency than they ever had before in our relationship.  Then I mistakenly chose the wrong path: misreading the signals I chose the safe option in suggestions about a diagnosis of M’s condition.

My initial thoughts were that M was becoming more assertive with a belief that she was always right in her judgement.  When the alternatives were suggested that she was either exhibiting the ‘Right Woman Syndrome’ or early onset dementia: I chose the safety of the former.  I reckoned it might be easier to accept that my wife was becoming assertive, sometimes unreasonable, rather than exhibiting the symptoms of early onset dementia.  When I raised the changes in her personality with others I hit a  steam roller of denial and accusations about my own mental state.

The initial reactions to my concerns about changes in M’s personality were met with disbelief and denial.  In retrospect it is easy to see how others were taken in by a highly intelligent person’s ability to conceal the changes that were taking place in her cognitive ability.  Some regarded me as the problem and Marriage Guidance Counselling as the solution to problems in our relationship.   Others said that they were not seeing what I was seeing or they simply did not want to get involved. My story here is familiar to anyone who has perused the literature on dementia.  It is also possible that I was also in denial and my attempts to gain an early diagnosis were ‘half baked’.

The sad thing about all this is that earlier diagnosis would have made no difference to M’s treatment: there is no treatment for vascular dementia.  Yes I remember that the debate continues about mixed dementia.  The simple fact remains we would still have been left to find our own way on our journey with dementia.  However a couple of things could have resulted from an earlier diagnosis: empathy from family members rather than misunderstanding and we would all have progressed further on our learning curve on our journey with dementia.

Stroke led to M’s diagnosis of dementia: significant distress could have been avoided with an earlier diagnosis.

At some stage in their journey with dementia the sufferer is likely to express a wish to want to go home.  Any literature on memory loss is likely to mention the ongoing aspiration of those struggling with dementia to want to return to a familiar place.  I have deliberately chosen ‘familiar place’ as it seems to me from my experience of watching the condition progress here that is one way of looking at the situation.

M often expresses that she wants ‘to go home’ as she doesn’t like it here.  At first I considered her concerns and suggested we explored the options of moving.  It soon became clear that ‘going home’ was an aspiration to get back to a place in time before dementia struck.  So ‘home’ is a place where confusion and fear was not a constant part of daily life.  It seems to me that wanting to ‘go home’ will be a feature of M’s condition for as long as she is able to articulate her jumbled thoughts.

On most evenings M is packing to ‘go home’ as in her muddled thoughts this is not our home.  Indeed, she often says that we are on holiday here and ‘when we get back home’  all sorts of things will be undertaken.

I have just had a bizarre couple of hours: while I was putting away clothing that had been washed; M was packing to go home.  As I emptied the washing basket space was filled with all manner of things for the journey home. There are carrier bags full of our belongings as we don’t want to leave our things behind when we eventually go back home.

I am generally awake and downstairs before M has woken in the morning.  The early hours as the sun is rising are generally spent putting our belongings back in their normal places.  As i go about my early morning duties I have to put music on to help me cope with the thought that i am likely to have to repeat the process the following morning.

Who can blame M from wanting to get away from a condition that is robbing her of basic capacities, rational thought and the ability to think rationally?  If the solution was as simple as ‘going home’ I would personally get the cases out of the loft now and we would be on our way in the morning.  I wouldn’t wait to sell this place we would be off in the morning at first light.

Music has been suggested as a good medium for those who are experiencing dementia.  Any search of the Internet would bring up positive experiences of such initiatives.  I want to share how music  changed things here last night after a M being exhausted for most of the day.  Before outlining our musical evening I will share brief details of our day.

The article reproduced below is the sharpest exposition I have read on living with dementia.

I make no apologies for a copying and pasting it in full on  this Blog: