This morning I have rebranded my Blog this in response to the second task in  Learning The Fundamentals course that I’m now following: the rationale behind these changes are fully explained on that page.  I have also included a Gravatar with brief personal information and contact details.  It is likely that the format of my blog will be refined as the course progresses

It has been another night of interrupted sleep and I have been up very early this morning.  Maureen is not in good spirits questioning ‘why she has been wasting her life here’.  Fortunately, there is lots of good advice around on dealing with wanting to go home and I hope to follow the suggestions of experienced practitioners on this front.

I have taken to the white board in the kitchen this morning listing four approaches to moving us forward on this journey: tai chi, dancing, meditation and bowls.  The beauty of the first three is that we can easily include them in our daily routines without moving from our home.  They might even be our salvation from boredom with our nightly routine of falling asleep while watching the television.  Bowls means popping in to the local Village Hall: tonight’s the night if we want to catch up with some kindred spirits.

Dharma is an approach to ending suffering within the Buddhist tradition: it offers a methodology for happiness.  The ‘P C Approach to Memory Loss’ is my personal approach to happiness (dharma) as we continue on this hazardous journey.

Maureen and I had a lovely day together yesterday and this morning has started on a positive note.  We structured our day really well yesterday and reaped the benefit.  Leaving the remaining work on the fence to a handyman helped the morning to get off to a good start: he will finish off my endeavours in the next few days.  This meant I could ease my aching bones in the Spa at the Leisure Centre while Gail kept Maureen entertained.

Gail and Maureen always seem to ‘have a ball’ together: ‘Girl Wednesday’ is a great deal of fun and their friendly banter is often aimed at me.  Just for revenge I created mouth- watering aromas with a vegetarian curry to send Gail off drooling over what she was missing.  If she behaves today, she is I may give her a sample of what she missed.

Our afternoon siesta followed my gastronomic delight: Maureen rested for a couple of hours while I took a breather.  Following tea I moved into my D J mode and Maureen sang like a lark for a couple of hours.  We even phoned up Maureen’s aunty Clarice to play ‘Spot That Tune’: she loved hearing Maureen in jubilant form after experiencing Mrs Dementia in full throttle the previous afternoon.

As the rain eased off around 8.30 pm we took the evening air to blow away the cobwebs.  On our return we watched a couple of episodes of ‘Open All Hours’ on YouTube.  I was dropping off shortly after 10pm but Maureen wanted to watch a little more of Arkwright’s attempts to sort out his love life and eventually joined me in bed an hour later.

I was awake shortly after dawn this morning and got up after providing early morning drinks.   Around 6 am Maureen joined me as I sat at the keyboard wanting to share her fears and anxieties about her poor memory.   As always I have tried to reassure her about the progress she continues to make.  I am hoping that I have steered things in a positive direction with some ideas about how to rebuild her confidence in her ability to recollect. 

One of the things we need to do is replicate yesterday’s structure to our days.  I am hoping that some form of cognitive stimulation in the evening prevents Maureen’s routine of bedding down on the sofa after our evening meal.  All I need to do is work out what might go down well on the night and accept that flexibility is the key to this journey.

Yesterday afternoon Pat a neighbour from across the road popped in to see how Maureen was doing.  After she had gone Maureen told to me that Pat had been ill and now had dementia but ‘she didn’t know what that was’.  She then asked me if I knew what dementia was and I gave a brief explanation.  She then said ‘you think I’ve got it don’t you?’.  I said I only knew what the medical people had said and Maureen made it clear that she had no recollection of their diagnosis of her condition.

Maureen seemed pleased with Pat’s visit and told her to pop in or call on us whenever she needed any help.  She didn’t seem spooked with the dementia issue and went on to comment on how fit and well she felt at the moment.  Maureen’s positive attitude on good days is impressive.  However, when the going gets tough I often  struggle to deal with the complexities of her presentation so I was very pleased yesterday to receive these helpful suggestions from Susan Macaulay:

‘One of the most useful things I’ve learned on this dementia journey is that when people who live with dementia exhibit responsive behaviours which appear angry and/or aggressive there’s usually a perfectly reasonable and rational explanation for it – from their point of view.

Such behaviour is not random (although it may appear to be), it’s not willful (although it may appear to be), and it’s not their fault (although it may appear to be).

“Problematic” responsive behaviour is most often the result of:

• A physical issue they are unable to pinpoint and/or articulate (e.g. pain, incontinence issue)
• A “trigger” or triggers in the environment (e.g. noise, temperature, activity)
• How I or someone else has interacted with them

The obvious way to stop anger and aggression is to address the root cause:

• Find and address the physical issue
• Identify and remove the environmental trigger(s)
• Stop blaming them and start taking responsibility for causing responsive behaviours

In the third instance, dementia care expert Teepa Snow suggests learning, practicing and using these six simple phrases to acknowledge the person, accept responsibility, diffuse the situation, restore positive energy and create the opportunity for healing.

• “I’m sorry I was trying to help.”
• “I’m sorry I made you angry.”
• “I’m sorry I embarrassed you.”
• “I’m sorry I made you feel stupid.”
• “I’m sorry I didn’t mean to, but I treated you like a child.”
• “I’m sorry, this is really hard.”

Meaning what you say when you say these phrases is important. Putting yourself in their shoes is helpful. Ask yourself these 20 questions to imagine what they might be feeling.

You can experience the power of the statements in the video below in which Teepa plays the part of a care partner, and the woman in the light blue top plays the part of a person living with dementia (see disclaimer)’.

Yet another disturbed night has led me to realise it is time to back off on several fronts.  I had a good chat with Sandra one of the Support Workers in the Admiral Nurses office yesterday and began to see that ‘jaw jaw is creating war war’: challenging Maureen about sleeping on the sofa only leads to distress for both of us  It is time to accept that trying to persuade Maureen of the errors of her ways is naive: I have to accept her reality.  Bob DeMarco from the Alzheimer’s Reading Room talks the need to take a step to the left and enter the world of the person who has dementia.

I followed Sandra’s last night and didn’t object to Maureen sleeping on the sofa.  I heard her moving around at 1pm and found her worried about intruders.  She looked a fearsome sight armed with a large plastic spoon and draped in a blanked: no wonder she saw the scoundrels off!  I accepted my reprimand for going to bed and leaving her to keep us safe.  After a while Maureen decided to go to bed and I eventually chanced my arm and lay alongside her for a pleasant half hour.  Unfortunately my thinking-hat was switched on and I hope blogging might help me to clear my mind.

I’m going to cancel this morning’s carer sit and have a chat with the Admiral Nursing staff about reviewing future arrangements on Tuesday and Thursday mornings.  I think it is possible that the trigger for Maureen’s current presentation is the additional carer sits fuelling her accusations that  I’m arranging baby-sitters so can I go out and have a good time.

There is little doubt that Maureen rose the occasion during our day trip to Coventry last week.  Another similar opportunity beckons this weekend when we could venture up North rather than receiving a visit from her younger son and his family.  I think a change of scenery coupled with backing off by taking a ‘step to the left’ might help on the next stage of this journey.

If I don’t keep my ‘eye on the ball’ this morning I’m going to cause Maureen unnecessary upset.  As I tried to encourage her to go to bed last night I noticed her engagement ring was no longer on her finger: she responded with ‘perhaps I’ve lost it’.  It’s important for me to take her comment at face value this morning: mention the missing ring and I am likely to cause pointless distress.

It is possible that Maureen’s ring has slipped off her finger as it is far too big following stroke.  However, there is also a chance that she has put it somewhere for safe keeping. What I have to resist is spending hours hunting around the house and garden: something we both did when I lost my wedding ring a few years ago.  After several weeks we declared my ring gone forever and I replaced it with a look alike that cost a few pounds rather than go for platinum again.

Daniel Craig came to my rescue last night and helped me not to absorb Maureen’s distress when she arose from the sofa shortly after 10pm.  She had no idea where she was and desperately wanted her mum.  My struggle to settle her took some time; particularly as she had no idea who I was or what we were doing in the same house together.  Watching ‘Sky Fall’ provided the distraction I needed so I didn’t absorb Maureen’s upset and hostility: yet again I still didn’t see if James got the baddies!

Maureen woke at dawn this morning looking for ‘the others’ and wondering if she was going to be ‘left alone for the day’.  It looks like being her ‘Tea Boy’ has helped her to feel safe rather than be afraid of being alone with me in the house.  I’ve tried to ground her with thoughts of searching for more LP’s at the Car Boot Sale just down the road.  I hope I can persuade Maureen to accompany me this morning: who know we might even find one by Johnny Ray to remind her of that live show when she was a teenage ‘Groupie’ waiting eagerly at the stage door for his autograph.  

Now I wonder if I can practise what I preach with some early morning meditation on the dangers of attachment:

We were both exhausted when we returned home last night after our day trip to Coventry.  Not at our best our tiredness almost spoiled what had been a very enjoyable day. 

I was amazed how Maureen managed to keep going for the whole of our away day.  For over 12 hours she stayed in Hostess Mode keeping ‘Mrs Dementia’ at bay until she stepped through the front door on our return home.  Then almost as soon as we turned the key that ‘wicked woman’ returned with a vengeance.  After taking refuge in the downstairs toilet for half an hour she reappeared as ‘you know who’ and let loose with all guns blazing.  

At first I struggled to cope with her presentation until I realised she was only expressing a familiar reality.  Once my tiredness, along with frustration, ebbed  I got to grips with her reality of being brought to a strange place against her will. Why should she be happy when she had been taken away from her family and friends?  After all she has no happy memories here only vague recollections of tragic events in her life.

We always try to accentuate the positives and there were many from yesterday with Maureen really enjoying spending quality time with her eldest son.  I’m not sure my mum enjoyed such a positive time with her’s as my visit must have seemed rushed as we tried to beat heavy traffic on our homeward journey.  She is used to seeing me alone and having my wife and daughter in tow may have been confusing.  We responded to her request to ‘take her out’ but it may have been rather late in the day as she fell asleep on the way back to her Care Home.

I need to create some quality time with my mum and daughter as soon as possible.  My change of plan made that impossible yesterday. One thing  for sure is my ‘flexible friend’, Sue the Social Worker, will soon sort out my next day trip so I can compensate for what my mum and daughter missed out on yesterday.  Sue will also applaud that I manged to persuade Maureen to make a day trip to Coventry and spend quality time with her son.

Footnote: ‘Maureen’ is back in residence this morning singing beautifully in bed as she samples her first cup of tea of the day.  I’ve just realised she is singing a track from one of our latest vinyl bargains:

Maureen has just thanked me for doing all the driving yesterday; commenting ‘it was a lovely day’

We had a magical evening last night singing along with Maureen’s Aunty Clarice for a couple of hours.  I knew I had the evening sewn up when I found a Platters LP in a second- hand shop earlier in the day.  The cheeky owner tried to prize a couple of quid out of me for this gem but I held out for half of that.  After an hour of the Platters we moved onto the Sound Of Music and Les Girls were in fine voice: I have posted a couple of last night’s favourites on my Good Music page.

We moved into our lounge for the final part of the evening as I wanted Clarice to see this gem on YouTube from Victoria Wood:

Victoria brought the house down with this exceptional performance.  She was such a talented artist and a sad loss to all fun loving folk.  We are still watching ‘Dinner Ladies’ on most evenings.

The Musical Evening kept Maureen off the sofa and we retired to bed together around 10.30.  Maureen still woke in the night wandering downstairs at 3am and getting lost. When I managed to get her back in bed she asked if it would be ‘ok if she stayed there until her husband came to pick her up’.

Yvonne the Occupational Therapist from the Home Treatment Team is coming at noon to assess Maureen’s road safety awareness.  I  hope she will also consider if there is anything else we can do to keep Maureen safe around the house.  I kept an eye on Maureen making a cup of tea this morning and she seemed to cope without raising any serious concerns.

Les Girls had a lovely evening together and I’ve now been charged with finding a gem by Johnny Ray as they’ve both seen him live.  The warmer weather should bring out the Car Booters so I’ll be off hunting over the next few days.  I have a funny feeling that I can add a bit of dancing to our next shindig.  How great it would be if I can then move us back to dancing with some of our old friends.  I wonder how Brucie is these days.

I listened intently to Maureen last night when she woke up from resting on the sofa. She outlined how everything in our lounge was the same as she had at home but she didn’t live here.  I didn’t challenge her reality just sought occasional clarification on her reality.  The interesting thing is that she recalled this conversation early this morning and attempted to put it into perspective: the mind boggles!

I managed to minimise distress last night and get a reasonable amount of rest.  I went to bed at 10 and left Maureen fast asleep on the sofa.  When I awoke at 1 am she was sleeping soundly.  At 3 am I heard noises on the Baby Alarm and joined her downstairs.  With some gentle encouragement I managed to ease her upstairs into the marital bed and she has slept soundly since.

Sleeping on the sofa in the early evening has now become routine in Maureen’s behaviour.  I’m going to see if another musical evening might just keep her off the sofa this evening.  I have a sneaky feeling that when she is bored the simple option is to lie down on the sofa and ‘rest her eyes’.  The Baby Alarm means that she is relatively safe but what I would give for a night of uninterrupted sleep!

Maureen spent most of yesterday in bed and made no mention of the events of Police bringing her home on the previous evening.  She was reluctant to get up in the morning when Chloe her Carer was here.  It was late afternoon before she made her way downstairs.  I used music to lift her mood prior to our evening meal when she had a pleasant hour singing along to Eva Cassidy and Rod Stewart.

Maureen took to the sofa around 8pm and was extremely unpleasant when I woke her at bed time.  At one stage I thought it would be another night that she would spend downstairs.  It was well after midnight before the banging around in the Girls Dorm ceased and the lights went out.

At 3 am I heard Maureen moving around in the Girls Dorm.  After a short while she burst into  into the Boys Dorm saying that ‘someone had been in her wardrobe moving her things around’.   I tried to find helpful things to say but received hostility and recriminations in return.  Apparently I’m falling short in my duties sleeping morning afternoon and night – if only I could.  Maureen’s rant lasted around 15 minutes until all went quiet: I wish I could drop off as easily after such outburst.  If I am to survive this I cannot afford to absorb any aspect of Maureen’s current presentation: Mrs Dementia is not a nice person and her antics are best soon forgotten.

At 4 am Maureen was up again calling fo her dad.  She then made her way downstairs  calling for Paul.  I joined her downstairs made her a cup of tea and lay beside her in bed.

Maureen woke again at 6 am and held forth about being kept a prisoner here.  She said she hasn’t done anything wrong and they have no right to keep us here.  Once again she wanted to go home to our own place.  This familiar routine continued for some time and she reassured me that it isn’t my fault and she is just sharing her thoughts out loud.

I had several telephone conversations with various people yesterday about the demands of being Maureen’s Care Partner.  It is not my intention to attempt to summarise what was said here.  In common with professional staff I am concerned about capacity and best interest: mine.

Following discussions with our social worker I need to progress plans for visiting family and periods of respite..  Such plans will have to be carefully managed or the benefits of respite for me will be diminished by bitter recriminations from Maureen; as happened after my day trip to see my daughter in London in February.

Only time will tell if it is possible to have the capacity to be Maureen’s Care Partner, protect my well-being and develop a life of my own.

It would have been my dad’s birthday today.   He would be very concerned about his daughter in law’s current presentation.   He would be pleased to hear that Mum has recovered from a spell of the novo virus that has plagued her Residential Home.  He would also be pleased to hear that John, his eldest, is back in his Nursing Home after a night in Coventry University Hospital following a fall.  I know he would have ‘managed’ watching three people he loved dearly have their lives complicated by dementia: that was the Old Man.  We all miss his wisdom dearly as Finbar puts into words so poignantly:

My dad always encouraged his children up to ‘tell the truth and shame the devil’.  The simple truth is I am ‘managing’ despite the views of the Police passed on to me by Adult Social Care.  The fact is no-one could sustain the level of input that is needed to address Maureen’s current presentation.  I will be contacting our social worker this morning to request improvements in our Support Package before I keel over with exhaustion or something far more significant: it’s time for a focus on my capacity and best interest.

Just before 7 am I  sang along to ‘The Old Man’ and when I got to ‘he made me what I am’ Maureen said ‘I made my children what they are but where are they now: too busy to visit their mum!’

I have recently signed up to MindStart and their approach to dealing with changes in ‘behaviours’ is very helpful to me at this moment in time.  It supports the approach I am now taking to changes in Maureen’s presentation.  Perhaps a badge or a tattoo might help me keep on track!