After a Friday night with a difference we have decided decadence is the only way forward.  We’ve just been listening to UB 40 in bed as we ate our porridge at 1.45 in the afternoon.  

You might be able to guess what Ali and Chrissie were singing.   Well we’ve got our excuses for staying in bed late after last night.

Maureen is still very pensive and keeps thinking about why she is having to stay in this ‘Care Home’.  She feels she is going to be kept here until the money runs out.  No matter what I say Maureen does not believe this is her home.  In her opinion she is here because her family don’t want her.

A post card arrived a short while ago from her son who has called in at Rome on a cruise.  She amazed me that she could read most of it without her glasses. I am hoping that her eye test on Monday will lead to new spectacles to replace those that have been missing for a couple of weeks.  This might mean that we can resume crosswords and other activities where she will need her glasses.

Who knows what the rest of the day will bring?  The sun is shining so I am hoping a short walk will blow away the cobwebs for both of us.

Maureen didn’t feel up to having her hair done yesterday.  She thought she had spent too long tidying up the kitchen after breakfast and was too tired to face an afternoon in the hairdresser’s salon.  As we were eating a late lunch her Aunty arrived and that seemed to lift her.    She then spent an hour chatting and listening to Clarice.  We then popped out with for a short while and went round Clarice’s house for a cup of tea.

Our friendly chemists is across the road from Clarice’s house so I encouraged Mauren to have her blood pressure checked.  The top figure was much higher than it has been for quite some time, so further monitoring will be necessary over the next few days.  On return home Maureen’s son phoned to confirm his visit at the weekend.  Following his call confusion surfaced about; when he was coming, and who would be in the visiting party.

Today’s experience has set me wondering about why Maureen’s presentation can change so dramatically.  As an neo buddhist I am wedded to the law of cause an effect.  Therefore I find it difficult to accept that dementia has random ramifications.  I would speculate that Maureen’s presentation today has been the result of a set of events.  The downward spiral began on Monday when Maureen resented having a ‘baby sitting service’.   Tiredness has had a significant impact, yet again, on Maureen presentation: yesterday was far too busy.

I hope to be able to give Maureen some space over the next couple of days.  It’s time to stay close by and act as a gatekeeper and make sure other people don’t wear Maureen out.  That means making sure that carers have plenty to do and leave Maureen to rest.   I know I will get a day off on Sunday when I go to London to see my daughters.  My post a little later on this morning is an attempt to ensure Maureen has a supportvie time while I’m away.

Best leave it to Diana Ross to close this post: Chain Reaction.

Just for once I thought I had got it right last night when Maureen went to ‘rest her legs’ shortly before 8 pm.  She woke an hour later and asked me ‘if it was time to go to school ?’  On hearing that it was Saturday, she went back to bed and closed the bedroom door.  When I turned in a couple of hours later I went for the spare room to make sure I didn’t disturb her.

At 3am Maureen went to the bathroom and complained that ‘she was cold’.  She wondered ‘how she had got here?’  I left her to it for a while and she went downstairs to search for socks.  She continued to complain that all the radiators were cold.  After a short time I joined her downstairs and eased her back to bed.  The curtains were wide open in ourbedroom and the street light  beaming in.  I closed the curtains, added some additional bedding, introduced a warming heatie-wheatie and enquired if I should join her in bed.  After a while of reassurance from me, on all sorts of fronts, Maureen returned the land of nod: no such luck for me.

If I don’t find a way of getting more sleep soon I am going to be in trouble. My body is crying out for more rest but I am struggling to find a way forward.  I am sure my leg and shoulder problems would be eased by both following the recommended exercise routines and more rest.  I could be that my gastric problems that will be investigated in a week’s time might be eased if I slow down a little.  Unfortunately, once I am awake I can’t seem to be able to take off my thinking cap.  I am very concerned about the news I received on my brother yesterday and that will feature in a post in a couple of hours.

It is never easy for me to develop a healthy sleep pattern, and I need to do something to address my current round of early morning wakening.  Unfortunately, there is so much going on at the moment that it is difficult to switch off once I am awake.   Perhaps the solution is to sort out one or two pressing matters, then I will be able to sleep a little more peacefully and for just a little bit longer.

When Maureen and I first got together I used to hide all over the house and she would try to find me.  Now she is getting her own back in all sorts of ways.  I am certain there is a conspiracy going on here to keep me on my toes.  On most days some of Maureen’s gear goes missing, and things come to a halt until they are found.  I am not sure if this is all part of a ‘cunning plan’ to help me to become more patient but generally when we are planning to go out we are delayed until one thing or another turns up.

I have now gathered that there are some familiar places where certain things end up.  Maureen has never put them there because her mantra remains: ‘everything has its place and everything in its place’.  So the explanations about her things appearing in the strangest places continue to confound me.  Sometimes it’s the one legged lady who nicks her shoes or the common thief who has stolen her toothbrush.  Standard advice is to go along with the explanations and never challenge their validity.  I have learned that this is the only way to achieve  anything that resembles a quiet life.

Searching will begin in earnest this morning for three relatively important missing items.  Maureen’s reading, and distance glasses, have been missing for a week.  Someone has also stolen, or stashed away, her winnings on the Premium Bonds – fortunately only £25, or unfortunately.  Best get my thinking cap on and get searching as soon as possible..

From Maureen’s perspecive people are also missing: particularly close family.  Maureen feels that: ‘they never come to see her’.  She often rationalises this thought with: ‘they don’t know where I am’.  The fact of the matter is that they do know where she is, and we know where they are.   Maureen believes that we have no contact details for each other.

In fact Maureen has forgotten that her eldest son was here eight days ago.  What she may be suggesting is that from her perspective she doesn’t see them often enough.  They all live considerable distances from us and have busy lives of there own.

Maureen never complains about the behaviour of family members; accepting that children move on when they get married.  She finds phone conversations difficult and is often reluctant to take their calls.  When they visit she resorts to the ‘hostess mode’ and puts on a show to convince them she is fine: as all mothers do at one time or another. This means that they may have little idea how her condition is progressing.   When she she puts on a show, and confabulates, her cover up is convincing.  That means they have no idea how time may be running out on them to be with the mother that has nurtured them so lovingly.  I hope that my approach to being a Care Partner gives us all  time to appreciate what a beautiful person Maureen still is – even with dementia changing her in all sorts of ways.

As I donned my chef’s outfit yesterday to prepare Sunday Lunch Maureen asked how she could help?  I suggested she could lay the table.  She moved into the dining room and began setting out the table.  When I caught up with what she had been doing I noticed she had put ou four knives and a fork.  There were no place settings with cutlery and table mats randomly scattered around.

Maureen  then offered to help with the preparation of vegetables.  She coped well with chopping peeled carrots but struggled with the cauliflower.   In the end she asked me to take over.  My sous chef is finding it increasingly difficult to make a helpful contribution in the kitchen.

If I supervise Maureen closely  things are done in a safe and helpful manner.  Leave her to her own devices and danger lurks, with attempts to boil the kettle with the lid off alongside other random behavior.  When she helps with washing up; dirty pots are often on the draining board alongside those that have been cleaned.

When we sat down to eat Maureen decided that it was too warm in the dining room.  She drew the blinds and then couldn’t work out how to open the patio doors. Then she decided her knife was sticky.  She returned from the kitchen with three and asked me if I had one.  I was already eating with all equipment at hand.  She then decided that her fork was sticky and went to replace it.  She had  laid the table with the ‘sticky cutlery

Maureen said she wasn’t really hungry, as we had recently had lunch.  All she had eaten earlier was breakfast.  When we moved to the lounge to eat sweet she spilled food on her T Shirt.   She  went to wipe it off and returned without her sweet. It took her some time, and my help, to find  where she had left it in the kitchen.

After dinner we watched TV for a while and I suggested it was time for a siesta.  I was relieved when she took up my suggestion as we had walked a fair distance before lunch.  After half an hour Maureen woke up and decided it was time for bed.  I didn’t tell her it wasn’t even 7 ‘o’ clock as she was obviously tired.  ‘Half asleep’ as she puts it,  she struggled to get ready for bed, even with my assistance.

The events of the afternoon led me to regret not progressing an additional carer sit over the weekend.  Just another body in the house helps me to cope more easily with Maureen.    My extremely capable wife is no more, and another pair of hands is so welcome.  I think the time is approaching to have carers on hand most days: so that I have the energy to keep Maureen fed, watered and safe.

Just to be on the safe side I initially decided to sleep in the spare room last night.  Maureen has  closed our bedroom door.  She seems to do this when she isn’t quite sure who I am.  I didn’t to risk a repetition of the other night with more of those deafening screams .

Once in the spare bedroom I heard her moving about next door.  Thinking she might become confused, and anxious, I entered the marital bedroom.  As I slipped into bed she let out a loud scream.  I reassured her it was me and she said ‘I had frightened her as she didn’t know who it was’.  Maureen apologised for screaming and we soon settled down for the night together.

When Sue our new social worker comes to get to know us on Tuesday, she will hear that Maureen’s verbal ability is intact. Maureen will confabulate to put on a good show.  She will pull out all the stops to convince the social worker that she is ‘sane and doesn’t need to be locked away’.  If Sue asks her if she reads she will confabulate that she scans the newspaper daily.  If she asks her to put on her reading glasses Maureen is unlikely be able to find them, as they have  been missing for a week.

There is a vast difference between what Maureen will spin and reality.  Maureen ‘lost her memory once’ as she frequently explains it.  Good luck Sue as you try to sort out the conflicting realities and get to know us.

I have come to the conclusion that there is a significant difference between how Maureen and I are approaching dementia, and  those who claim to be supporting us on our journey.  In simple terms ‘we are not singing from the same hymn sheet’ as the medics and professionals.  I think the same could  be said of most of our family, and friends.

As anyone who reads this blog would know I am relatively new to being a Care Partner.  Much of my approach has been developed by trial and error.  Friends on Talking Point have also provided  sound guidance.  I have also read  quite a lot about dementia, and attended various courses.

My professional career in life-long  leaning has also influenced my approach to being a Care Partner.  There is little doubt that andragogy,  is the large umbrella under which most of my approach shelters.  This is rather different to the approach of others which appears to be based on a pedagogy of the oppressed.  In simple terms the former starts from an understanding of the individual: the latter focuses on filling an empty vessel.  My approach concentrates on working alongside Maureen on her agenda: the other conductors try to get her to sing their songs.

At a practical level the following list illustrates the thinking  behind my approach to being a Care Partner to Maureen:

• Maureen’s dementia is not a mental health condition.
• The brain can find avenues to re route or repair.
• We use coconut oil in our cooking on most days.  Some othere helpful supplements are included in our diet.
• We take regular exercise.  Maureen has developed her own circuit in our garden.
• We buil cognitive stimulation into daily living.
• Humour and lots of laughter need to ring out from our household.
• We avoid activities that separate and label participants.
• We try to carry on as normal .
• I  never give Maureen any bad news.
• To ask others to keep phone calls short, and never ask questions.
• I never ever say to Maureen: ‘Do you remember?’
• I try to talk less and listen more.
• i try to grasp Maureen’s reality at any particular moment in time.
• I play music that has meaning for Maureen.
• I try to simplify, simplify, and simplify our lives.

I am sure I have missed out one or two things from the above list.   After all our approach is a ‘work in progress’, with an real emphasis on developing my listening skills.  If I don’t hear what Maureen has to say; how on earth will I ever comprehend her reality?

Footnote:  I will always be eternally grateful to those secondary school pupils in Cleethorpes and Grimsby who had the pleasure of my company when I worked as a Supply Teacher.  I frequently walked into a classroom full of puplis who I had never met before.  Sometimes I had to face the music using my own resources; as lesson plans and resources were mysteriously missing.  Generally, my audience consisted of  30 odd pupils who were  ‘up for it’: supply teachers are generally seen as ‘fair game’.  They taught me to improvise and think on my feet. What better preparation could I have had for my role as a Care Partner?

 I often smile when I occasionally meet one of my old adversaries in town.  I want to say: ‘thankyou for what you taught me’. Then I stop myself, and think wait a minute: ‘they thought I was mad then; mustn’t let them think they were right’.  After all my role as a supply teacher was to fill up empty vessels.