The one certain thing about dementia is that it is a progressive condition with decline inevitable.  There have been several attempts to locate where individuals are on what is often described as their journey with dementia.  With my limited experience of the condition I would argue that such classification is largely academic.  It may be worth putting on record that my personal experience with dementia is not restricted to M: my mother and brother have both been longer on this journey than my wife.  Mum has vascular dementia and J has Alzheimer’s disease.

I could spend time locating mum, J or M in any one of the classification systems for the condition.  They could all have Roman Numerals, a Gem stone, or something else attached to their medical record.   I would argue that outside their circle of clinicians these classification systems have limited  value.  It may be more helpful to know that my mum is very quiet and needs lots of support for her personal needs.  J requires medication so that his carers can manage his personal care.  Whilst M appears to be in a period of rapid decline with simple tasks  beyond her current capability.  The point I am possibly labouring here is that numerals and Gem stones are only partially helpful, if at all, for those involved in caring for someone with dementia.

As M’s main carer the important thing for me to accept is the dynamic nature of dementia.  My responses need to take account of a number of factors if they are to be appropriate.  When I get them wrong as I frequently do then we both pay the price.  Confusion, created by an inappropriate response, can lead to the sufferer ‘lashing out’ and the carer being on the receiving end.  Even the most mild mannered person can turn into a tyrant when their dementia is provoked by a well meaning carer who has just got it wrong at than particular moment in time.

I think it is worth giving an example to make my point.  M is one of the most loving and gentle people I have ever known.  Physical violence does not feature in her repertoire. Some months ago I was probing the fact that her underwear never featured in the washing basket.  She explained that she was taking care of this aspect of her clothing.  As this seemed unlikely I pursued the matter further, and further, until I received both a slap across the face and a vicious verbal attack.  The point I am making here without going into further detail is I got what I deserved: my enquiries were shortsighted and insulting.

It is likely that Memory Tests of one form or another are used to classify where someone is on their journey with dementia.  This is not the place to consider the shortcomings of testing: that will be discussed in another part of this Blog.  The reader may well ask where does this leave the carer?  How are appropriate interventions decided upon?  What is the best way to approach the caring role?  My simple answer is to attempt to minimise distress.

This post has become something of an aide memoir for me this morning.  Perhaps today’s shopping list of possibilities is the only way forward:

1. Attempt to make progress on clothes sorting.
2. Allow M to sleep until she wakes.
3. Restrict any form of external communication.
4. Use music to lift mood.
5. Build on any interests that M exhibits.

At this stage of M’s condition it appears that exhaustion is a constant feature: time will tell if this is a permanent, or temporary, aspect of her journey.  I am unclear how attaching Roman Numerals or Gem stones to her medical records would assist me in any way whatosover this morning.

M is extremely tired at the moment and sleeping for substantial periods of time.  She has just had breakfast after over 13 hours in bed.  During the early part of the morning I took her a couple of cups of tea but she promptly dozed off again.  On several occasions in the last few days tea has been thrown away as she has gone back to sleep without finishing her ration.  The advice on sleep has changed along with her developing diagnosis that has been outlined in previous Blogs.

When stroke recovery was predominant in our minds rest was viewed slightly differently.   The optimum balance between sleep against activity needed to be explored.   Recent events and clarification that we are dealing with mixed dementia put a different perspective on M’s sleep patterns.

The phrase ‘Sleeping for England’ comes to mind when looking at M’s current pattern of rest.  Several things need to be explored to see if there are clear reasons for her current ability to sleep for long periods of the day and night.  There are no obvious signs of an infection that would sap M of energy.  Blood tests will be carried out in the next few days to check on her vital functions.  Once this review of her overall condition has taken place we will be clearer if progression of dementia is behind her exhaustion.

As the brain loses it’s normal ability to function everything takes so much longer and far more energy.  Just processing simple information or undertaking basic tasks becomes extremely tiring.  I hope I am wrong; but  Sleeping Beauty has dementia and her Prince Charming may have to accept that significant deterioration is taking place in her condition.

One of the most difficult things for me to accept has been M’s recent dependency on me for any manner of things.  In fact, dependency in itself is completely alien to my philosophy on life.  Having spent  my professional career encouraging young people and adults to realise their potential and become active citizens it is hard to change habits of a life time.  In the early days when M’s condition began to surface I resisted completely the need to supplement her dwindling capacity.  I simply did not understand what was going on and completely  misread the symptoms.  Stroke changed all that but once again I have had to review my approach to things.

Reorientation is the general approach to stroke recovery.  With repetition the victim has prospects of recovering capacity and regaining cognitive function.  Lists and repetition of tasks are obvious ways forward as the injured brain learns to recover from major trauma.  In the early days M received support from the Stroke Team to enable her to begin to learn how to function once again.  She made excellent progress making light of her 50% loss of peripheral vision.  However, time went and it became clear that reorientation alone could not compensate for vascular damage that had occurred.   It soon became evident that stroke had impacted upon her short term memory with an eventual diagnosis of dementia.  i have already outlined the changing nature of diagnoses in a previous Blog.

When someone has strove to be independent throughout their life dementia must be their worst nightmare.  If they have prided themselves on be extremely organised and thorough in all domestic matters then it must be as if lightening has struck when their faculties start to diminish. M is experiencing the storm of her life trying to make sense of chaos that has replaced order in her life.  Fear is present in her troubled mind every waking hour: sleep is the only time when she is at peace.

As her main carer I face a steep learning curve to step up to the mark.  My role is made doubly difficult by having to accept that someone with substantial intellect is becoming needy.  She has to have a crutch if she is to function.  I have to try to replace the steps in her faltering memory that have been wiped out by dementia.  To be effective in my role I have to keep confronting myself that M as I knew her has gone and dementia has robbed her of the ability to be independent.  It is me that has to change as she is no longer in charge: dementia now calls the shots.

I have previously referred to the supportive network we have at our disposal in our locality.  We are fortunate to  have Admiral Nurses; a real luxury in any community.  I generally meet with H once a month to discuss issues associated with my role as M’s main carer.  In addition, her availability on the phone, or response to E Mails, is first class.  H introduced me to the work of Teepa Snow and her approach to dealing with dementia is enlightening.

It is rather ironic that periods of depression have also linked me with a further significant others.  Staff at our Medical Centre supported me to ‘think my way out’ of depressive episodes and help me to understand that depression is a condition not an illness.  Patients at our MC are extremely fortunate that we have a therapist on the staff.  His ability to help me see depression for what it is and the triggers in my life has been a refreshing change from the ‘tablets for life’ approach of local psychiatrists.  My contact with P has been ongoing and his experience in the early part of his career when he was a nurse with dementia patients has been invaluable.

H and P both assert the environment is the critical factor with dementia.  The debate about medication’s ability to impact upon the condition is ongoing.  Therefore our ability to impact upon the environment has real significance.

The simple message that P and M both give is to concentrate on minimising distress.

It is quite clear where our focus needs to be this morning.  Maureen’s immediate distress is that she has nothing to wear: despite wardrobes and drawers full of clothes.  I recall the Occupational Therapist form the Stroke Team spending a couple of hours with her on this front months ago; to no avail.  Maureen saw her as the woman who had come to either ‘steal her clothes or persuade her to donate them to charity’.  Consequently, all clothes were put away shortly after her departure.

I am on the case opportunistically this morning.  Following the normal period of upset I have emptied Wardrobe One of all Maureen’s clothing: with her consent.  It has all been removed to a spare bedroom.  I have launched this activity as something we both need to attempt, as I have lots of gear I never wear .  Only time will tell if this early morning enthusiasm to sort things out will be productive.  However as a minimum some things that are ‘not mine’ in Maureen’s view can be disposed of and not cause further upset.

Things have been very challenging for us both in the last few days.  I have been reassured with the speed at which professional staff have been able to offer support to help me accommodate M’s current presentation.  The events of Thursday night were unprecedented and extremely challenging for us both.  It would be true to say that I was running out of ideas and by chance Lionel Ritchie came to my rescue.  M clearly didn’t like his set and decided to lie down on the sofa once more and eventually settled down.  This time my suggestion to retire to bed led to a positive response.

We are now set for a challenging couple of weeks with new carers coming along on a daily basis.  One of our regulars is off on honeymoon so there will be new faces on the block.  This immediately presents difficulties as any change from routine is unsettling for M.  However, change also presents an opportunity for me to review my approach to things.

Generally, I have viewed carer ‘sits’ as an opportunity to have ‘me time’: a break from my caring role.  M often sees this as something akin to desertion asserting: ‘that we don’t do things as a couple any longer or I didn’t leave you with carers when you were mentally ill’.  Perhaps, it is time to work with M’s reality on this front and review how we use carers.

It is possible to see carers as a helping hand to both of us.  As an elderly couple what is wrong with having a helping hand in the house? If we shift the focus of care to domestic duties, including shopping then there is a possible bonus for us both:  we are relieved of domestic dross and we increase the quality time we have together.  Such an approach would also support the line to M: ‘you are not ill you are recovering from stroke’.   So there appears to be a bonus payment from accepting M’s realty that we need to get back to being a married couple, who have always been very close.

There are other aspects of M’s reality that I am testing out in the next few days.  New technology is ‘decadence rather than progressive’ for the human race as it is anti social media.  Her aversion to telephone is obvious whenever we receive an incoming call: particularly when it is for her.  It is possible that phone calls only highlight her poor memory so are to be avoided.  M remembers with fondness writing and receiving letters from her relatives.  I have attempted to rekindle such communication on a couple of fronts.

Many suggests living with the reality of the person with dementia.  Some even suggest ‘Love Lies’ as an important approach to communication.  As M’s intellect is still intact I have often got caught out on that front.  When she is alert I have a feeling that she may even set a trap for me: on occasions I have taken the bait hook line and sinker.  However, I think it is worth working with M’s reality for a while and seeing where that takes us.

In the 23  years we have been together I have learned a lot from my beautiful wife.  By and large she continues to exhibit her substantial intellect when she is lucid.  When I see people glued to their gadgets I agree with her about the contradiction of ‘social media’ .  No post tomorrow but it will be interesting to see what arrives on Monday and where that leads on our journey with dementia.

I had to ride out a long storm last night.  M had been sleeping on the sofa for a few hours when I woke her to see if she needed anything.  She declined offers of food, medication and drink.  She also refuted that it was time to go to bed as she had been asleep for ages and it must be morning rather than 10 ‘o’ clock at night.  I wasn’t too surprised by her response but really  taken aback by what followed for the next couple of hours.

Hostility raged on a number of fronts.  M was very confused and kept seeking information on where the other people in the house had gone.  She greeted any explanation I gave with contempt and frequent unpleasantness.  I attempted to ride out the storm with empathy and compassionate communication.  Where people slept became an issue for quite some time.  M once again did not ‘want a man in her bed.  Anyone who knows her history will fully understand such apprehension.

The storm raged for quite some time and I eventually realised I would just have to ride it out.  None of my normal tactics were having any impact whatsoever.  Lionel Ritchie eventually came to my rescue as I resumed watching a recent performance of his on YouTube Maureen took to the sofa.  Whilst lying down she complained that everything smelled of perfume and was making her feel ill.  After a while with her cardigan hoisted over her nose she drifted into sleep. Lionel became very noisy as he got into his set and pulled the audience along.  As the volume increased and the old numbers came along I decided to pause the show. I faked boredom and suggested it was time to retire.

Maureen took a little persuasion to climb the ‘wooden hill’ and engage in her normal bedroom rituals.  I got into bed promptly and watched while the searches and accusations went on.  Someone had moved or stolen her things yet again.  I was very relieved when she eventually settled in bed and we could exchange our final words of the day: ‘night night sleep tight….’

I am pretty sure that exhaustion had brought on the storm cloud last night.  M had been up early and on the go until 5 pm yesterday.  She had performed well in ‘hostess mode’ for her brother and his wife.  This had been very different from her recent regime of frequent periods of rests throughout the day.  Stroke robs sufferer of energy on a random basis: dementia has the potential to do the same on a regular basis.  It simply takes so much energy to process information and then act upon it.

Further storms might be avoided if visits are of a much shorter duration in the future.  That is difficult when most visitors have to travel such distances before they can be with us here in Cleethorpes.  However, if we are to continue to seek to minimise distress then it is an issue that just has to be tackled.

The choice of memory issues as the name for this Blog has ironic connotations for several reasons.  Some time ago I began to have concerns about my wife’s ability to do things that had always been well within her capacity.  She began to mislay things with increasing frequency and she didn’t seem her normal self.  It also became difficult to hold rational conversations with her.  There were several other tensions in our life and at first I just put it down to a bad patch in our marriage.

When I raised my concerns with family members it soon became clear that they did not share my point of view.  I raised the matter with our G P and he felt impotent to deal with my concerns unless M was prepared to raise the matter herself.  This was a ‘no go area’: as as soon as I mentioned my concerns anger was M’s response and recriminations usually followed.  Stroke became the game changer with M’s memory issues.

M made a very good recovery from stroke with 50% peripheral vision loss being the obvious marker.  Her confidence was obviously shattered with a near death experience.  Discharge from the Stroke Ward of our local hospital into the Independent Care Facility was prompt.  She felt her way around the walls of the ICF for over a month before we arrived at the Multi Disciplinary Meeting to discuss going home.  One of the conclusions of the meeting was that the Clinical Psychologist from the Stroke team would conduct Memory Tests to consider concerns that had  been raised with M’s doctor the day before stroke.

Some weeks later the C P asked to see me in private to alert me to the results of her tests:  mixed dementia; Alzheimer’s Disease and Vascular Dementia. It was one of those occasions where you hate to have your opinions about your wife’s health confirmed.  The C P advised me that an earlier diagnosis from the Memory Service of Mild Cognitive Impairment with Vascular Changes was a holding position because of the proximity of stroke.  Later testing by the Memory Service resulted in a diagnosis of vascular dementia.

I realise that this may be  confusing to the reader and I have to confess that I have got lost on our journey.  This became evident yesterday when our G P mentioned, in passing, that M was suffering from mixed dementia.  Perhaps I have been on am mission of escapism: accepting without question that the diagnosis of the Memory Service of vascular dementia was definitive.  The ploy of using memory issues in relation to this Blog is because the Memory Service prefer to use this phrase rather than dementia.  I will return to this issue later when I focus on our experience of Memory Service.

It now 12.30 and M is still in bed.  Unfortunately, I may have chosen the wrong words this morning when I said: ‘ the Carer is here and I have to go for physio’.  M’s immediate response was: ‘I don’t need a carer I have been by myself this morning when you went to work’.  The problem was compounded by not being able to say a familiar face was here.

If I had the ability to turn the clock back things could have been rather different.  I could have left M in bed and gone for physio.  She would either have been in bed on my return or getting to know the new carer.  The outcome of my poorly chosen words is that I had to cancel my physio appointment and M is still in bed.  In addition, she has not had this morning’s blood pressure medication.

Things have been going well lately and complacency has crept into my performance.  With a little forethought I would have been building on the positive atmosphere that has been created in the last few days.  Words and facial expressions are critical when you are caring for someone with vascular dementia.  But hey ho it is possible that M will expect breakfast when I encourage her to get up.  There are no set times for meals with this condition.

Some suggest ‘going with the flow’ as the approach when trying to deal with dementia: I much prefer the acronym  GIGO.  My performance this morning has been GARBAGE (in) it is not surprising I am getting GARBAGE (out) in return.  Perhaps ‘Fail to Plan: Plan to Fail’ is a more subtle way of expressing the way to deal with this vicious condition.

The stark realities of dementia have just been brought home to me as M woke from our afternoon siesta.  It is almost as though she has to reboot until she has some grasp of where she is in her life’s journey.

M woke at 4 pm in the afternoon and she believes it is first thing in the morning.  She mentions it is a lovely day and how quiet it is.  On offering her a drink she mentions that the first cup of tea of the day is always the best.  Her conversation then moves to the prospect of breakfast.

As we talk she converses with me in the third person.  She mentions things I have in common with her P.  Like me her prefers drinking chocolate to tea.  M seeks information from me as she has little in her memory about the sort of person I am and my interests.  Sometimes she suggests I am a manger of this ‘Care Home’.

We then move on to where we are geographically: this is not home.  M talks of Coventry and the benefit of living in a Close and walking her children to school with other residents in the area.  She then acknowledges that when you are surrounded with the older generation it is not as easy to make friends.  On occasions she will complain that she has been here too long and is well enough to go home.  Although we have lived her for 15 years now she often says she has not been here long enough to find her way around the immediate area.

Some talk of dementia as ‘time travelling’ where the sufferer moves around phases in their life.  They suggest that wanting to go ‘home’ is a metaphor for all manner of anxieties.  In my view put simply it is wanting to go back to a time in your life before dementia robbed you of capacity.

Complacency:  It’s so easy to forget really important things in the busy life of a 24/7 carer.  I did not check that  M has not taken her blood pressure medication this morning; it is till in the egg cup that we use as her medication dispenser.  The problem now is that as she thinks it is morning she does not realise she is late with her medication.  It seems likely that she will be reluctant to take her blood thinner (normally taken at tea time) later today.  There is no time to take your ‘eye off the ball’ in this game.

I cannot remember how I came across Talking Point but access to this excellent Site has been an incredible support on our journey with dementia.  The beauty of the Site is the availability of expertise from the ‘coal face’ membership consists of those with dementia and carers.  On many occasions my salvation and sanity has resulted from suggestions and advice that have come from Talking Point.  The Alzheimer’s Society should be very proud of the excellent support they have facilitated through this Site: Talking Point