It took me a while yesterday morning to understand what was behind Maureen’s question of ‘have I got to go to school today?’  After a little probing, she told me she wanted to be with her friends so they could play chasing games together.   When we went for a walk later in the day she asked again about the whereabouts of her friend.

Maureen often says she is lonely and wants to go home to her mother and father, to a place where she had friends.  We haven’t any close friends here and visitors to our home are few and far between.  Moving back ‘home’, is no longer a sensible option as familiarity with surroundings is essential as Maureen can now get lost in our own house. Therefore, it is an opportune time to attempt to develop some friendships a little further and entice them into our abode.  I’m hoping to set the ball rolling on this front later this morning. One of the candidates on my short list has a young child and I know Maureen would love to have a youngster to play with.  I hope to have some progress to report on Monday: have a good weekend.

I have never thought it necessary to do your ‘dirty washing in public’, so the detail of yesterday’s meeting with NAViGO needs to remain with those in attendance.  From my perspective, the air has been cleared and lessons have been learned which will be cascaded down within the organisation. It is reassuring that NAViGO has been prepared to listen to my concerns and put their hand up to acknowledge aspects of unprofessional practice. The written reassurances that  I received yesterday evening, lead me to feel optimistic that we will, once again, be treated with respect and person-centred care will resume.

It’s been another challenging night with a beautiful ending.  We began sleeping downstairs with Maureen waking up twice terrified by something or other.  We then moved upstairs in the early hours and eventually shared the marital bed: sleeping beautifully just like the good old days.

Maureen’s early morning concerns are that she might still be able to become pregnant.  Now that would be an immaculate conception that could lead to joint litigation against medics who would have real  problems defending their competence!

I made a silly mistake on turning in last night: I chose the wrong bedroom.  When Maureen woke in the early hours and found me in the marital bed she let me have it.  The onslaught lasted for over half an hour as I was told in no uncertain  terms what a s*** I was. Fortunately, I’ve now got a strategy for ‘cocking a deaf un’ so that I don’t absorb the vitriol and there was a bonus on-line.

Tara Quirke, in Australia, was on hand to sooth my troubled thoughts and offer warm words of encouragement -another Gem from Down Under. What she didn’t venture was I could have prevented the torrent by taking to the spare bedroom.  This will be my ploy in future to encourage ‘Mrs Dementia’ to stay in the closet so Maureen and I get a good night’s sleep.

The proof of this pudding is in the eating: Maureen has just joined me at the keyboard and I have eased her into the Girls Dorm.  She is a little unsteady on her feet this morning and feeling dizzy.  Her grip is strong and she can smile so I’m encouraging her to take further rest.  Just to be on the safe side I will relocate the Baby Monitor so I can hear her whenever she wakes from her slumbers.

I was rather taken aback on Friday when I met our social worker and he told me that a Best Interest Meeting was still on the cards.  A few days later my feelings are ‘bring it on’: it’s time to wipe the slate clean and have a wide-ranging discussion about the options for Maureen’s care and accommodation.  However, I’m not convinced that the expense of a BIM is justified when there is appears to be consensus on the way forward: certainly  amongst family members.  In fact, I think it would be relatively simple to tie up a few loose ends and move forward on a fresh footing.

On Sunday morning I was pessimistic about the prospects of a  proposed surprise family visit.  When I heard that six additional bodies were going to be in the house I panicked. My caution was misplaced and a well-planned visit went exceptionally smoothly.  Even though she slept for a long time after the visit I’m sure this  enjoyable occasion will remain in Maureen’s memory for a long time.  She may mix up names and families, but very positive feelings will still be retained in her emotional memory.  Although she hasn’t mentioned the visit again since they waved us goodbye yesterday afternoon and headed north.

I am also rethinking about making for the door as soon as carers arrive.  Whenever I’m out of sight and Maureen is unsure where where I am she is frightened.   She is frequently worried that I’m going to leave her for good,  despite me providing  constant reassurance, she thinks I’m in the market for a younger model:  nothing I say seems to shift her from this nagging doubt about my loyalty.

My loyalty to Coventry City is being stretched to the limit.  It’s not because the Sky Blues are on a bad run: the club is in chaos and the sooner SISU the current owners  sell up the better!

I’m yet to decide what to do when Girl Monday arrives this morning.

Roy Lilley has provided immediate solutions to the crisis in Social Care in today’s Newsletter:

Tom Schuller now a Professor has always encouraged me to share what I have learned on this blog.  He was a Senior Lecturer when I was one of his students at Warwick University almost 30 years ago.  His supportive guidance eased me through a Masters Degree in Lifelong Learning and the Management of Change.

This Blog has always been part of my coping strategy; it has aimed to  be an open account of our journey.   On occasions, I have pushed my luck and may have shared a little too much detail: thanks to the goodwill of others I have got away with it.  I hope that readers will understand my need to depersonalise my posts from now on and not use names or photographs without the prior agreement of the subjects.

To return to Tom’s challenge I ‘walked through a storm at 2.30 this morning’ whenMaureen didn’t know where she was; who I was, and was terrified.  As always I accepted her reality and tried to give supportive answers to her questions.  Then I gradually introduced objects that confirmed our togetherness, such as presents to one of us from her children.  As a cup tea worked  wonders I fired up YouTube and introducing my dad into the equation I put music connected to the RAF and remind Maureen how much he liked her.

Luck or intuition from YouTube then put the icing on the cake with Last Night of the Proms on screen.  I remembered Maureen’s affinity with classical music and we were still going strong 3 hours later.

The lesson from all this is that:

There is always someone, somewhere to help you on this journey.

Footnote: Now in Maureen’s reality: ‘it must be almost midnight and I’ve had that music thing on for ages and it’s time to go to sleep’.  I hope I will be able join my wife in a little more shuteye.

If my performance as a Care Partner for Maureen was being observed by football supporters I’m sure they would be singing : ‘you don’t know what you’re doing’.  This familiar retort when the referee makes a bad decision would ring out on our terraces here on many a day.  As the man in the middle, I could argue that I have my badge, an NVQ Level 2 in Dementia Care, and I’m not going to offer the whistle as I know my wife better than anyone.

Although I’m qualified to care for Maureen there are shortcomings within my skill set.  Throughout my working life, I have predominantly been a Group Worker even though my Initial Training included Counselling.  More importantly, I have not had a supervised placement in this field or an opportunity of shadowing an experienced practitioner.

Time is never on your side when you are a Care Partner for a loved one with dementia.  You may feel you have got the hang of it until one day you are caught out as the goal posts have shifted .  I sometimes feel I’m not keeping up with the game as Maureen’s presentation throws up new challenges.  It is fortunate that telephone advice is so readily available.

In the 90’s I sought support from a therapist  when I was ridden with guilt following divorce and  separation from my children.  Jenny used Transaction Analysis to help me put my situation into Eric Berne’s framework – always advising me : ‘if something isn’t working – try something else’.  When the going gets challenging here it is one thing I try to keep in mind .  Unfortunately, I’m far from match fit at the moment with a chest infection taking its toll but those antibiotics will kick in soon and I’ll be BACK!