I know this is the third post of the day but I just have to post it.  Maureen has just found an old cassette tape of hers by Elaine Page.  I have popped it on the deck and the response is amazing.  She is singing along and busy cleaning the bookcase where the player sits.

I would speculate that the music has reminds her of the ‘good old days’.  Trapped in an abusive marriage, where she stayed for the sake of the kids, music was her escape route.  You would only have to see her singing along to : ‘I’m gonna wash that man right out of my hair‘  – to get the picture.

What interests me in all this is something that Yvonna,  my resourceful chemist, mentioned some time ago.  She recollects an experiment where subjects were taken back to a moment in time when they were well.   Apparently the results were amazing with astounding recoveries.  Music has such a transformative impact on Maureen.  I wonder how she will react if I put on a bit of UB40 to remind her of the first concert we went to together 25 years ago?  There’s only one way to find out!

I have golden opportunity tomorrow morning to give Maureen a chance to show her compassionate nature.   At 9.15 I have to be in hospital for investigations into my gastric problems.  Not a major procedure, and I have elected for the spray at the back of the throat rather than a general anaesthetic.  A bit of meditation carried me through the procedure on a previous occasion.  I have been deliberating this morning over Maureen’s involvement in my trip to hospital.

Generally, we accompany each other when medical procedures have to be carried out.  This went without saying when we could both drive, as this gave us an option if either of us didn’t feel up to being behind the wheel.  I can’t get Maureen to come along on this basis any longer.  It would be tempting to leave her in bed in Chloe, our carer’s, capable hands.  However, I think this would be serious mistake and deny Maureen an opportunity of doing something that she has always done: ‘caring for yours truly’.

I think the plan on this matter is quite simple: it has to be based on giving Maureen the chance to show her compassion and nurture; something that came naturally to her before stroke.  To leave her in bed and go to the hospital alone would be saying you are not the person  you used to be.  That would be illogical when we are asserting that: Maureen is not ill: she is recovering from stroke.  Chloe can be our back-up driver and take Maureen for a cup of coffee while I have the camera down my digestive tract.

Opportunity knocks on two fronts today.  Firstly, there is an opportunity for Maureen to go on parole: a day off from her prison.  Secondly, Sue our social worker is calling and has an opportunity for a reality check on Maureen’s presentation.

Parole

There is a real opportunity for Maureen to sample some parole today and the beauty is the prisoner has suggested how it mught happen.  In response to me waking up at 3 am this morning with pain in my legs Maureen enquired if the Leisure Centre could be a solution.  She wondered if Fitness Instructors could come up with an exercise programme to strengthen my week muscles?  She also added that she wished she had taken up their offer of help with the problems she is having with her left leg.  All of this was music to my ears.

The door is now open for parole of some form today: several of opportunities for Maureen to have a day outside the nick.  It really doesn’t matter which of the three options she takes up – she’ll get away from it all in one way or another.  If she chooses to come along she can either join in or go for a walk along the prom.  The latter is familar territory as she has strolled to the Pier and beyond previously when I have been exercising in the swimming pool.   Even if she stays at home while I’m away for an hour or so she is moving on from being baby sat.

Life beyon diagnosis certainly has it’s twists and turns but you must never look a gift horse in the mouth.  Who would have anticipated that leg pain would open the way for the prisoner to have a bit of parole?

Reality Check

Sue our social worker is calling this morning, as part of her ‘getting to know us plan’.  This will be her second visit since we have become part of her caseload.  I am thinking of leaving her to it, so that she can see how Maureen is at 10.30 in the morning.  The only way for professional staff to understand Maureen’s presentation is to experience it first hand.

Getting to know Maureen by chatting to her on the sofa has its merits.  Such know-how needs to be placed alongside seeing her in action throughout the day. There is an opportunity for Sue to see her as she comes round in the morning today – although sod’s law she has been up much earlier than usual today.  However,  I wouldn’t underestimate Maureen’s ability to turn on the ‘hostess mode’ at any time of day.  I understand she pulled out all the stops on Sunday morning, and turned it on for her son as soon as he arrived.  Nevertheless, seeing Maureen in the morning will add to Sue’s perspective on the situation here.

I realise I am very fortunate with the level of support I get in my role as a Care Partner for Maureen.  Today is equivalent to a BOGOF with a NHS appointment.  What’s he on about now you might ask?  Well ‘hold your horses’: I’m going to tell.

This morning I have an appointment with the therapist at our Medical Centre.  I see Paul every 6 weeks or so following depressive episodes a few years ago.  I have mentioned on several occasions how Paul has taught me to think my way out of depression.  The BOGOF comes in because Paul initial training was as a Mental Health Nurse and he spent the early part of his professional life work on a dementia ward in a hospital.

Paul has a radical approach to mental health and how to supported a loved one with dementia.  His simple message to Care Partners is: ‘seek to minimise distress’.

Then health risks associated with being a Care Partner are well documented.  I am very fortunate that I have the opportunity to discuss my well-being with someone who understands dementia from a theoretical and practical perspective: BOGOF indeed!

There was an interesting news item on Monday about a school that had decided to shift lessons for 6th Formers to the afternoon.  Teachers asserted that is was counterproductive to get 16 year olds out of bed in the morning, as they needed lots of sleep.  Staff and pupils both commented on the benefits of switching to lessons in the afternoon.  There are issues about timing to be faced as Maureen adapts to life after her stroke.  

The brain injury that Maureen has sustained  has disrupted her cognitive functioning.   It now takes her far more energy to process information and function effectively. You only have to see her in action to almost hear her thinking before she acts.  Her exhaustion is evidenced by the need to take regular naps.  If she goes into ‘hostess mode’ she can keep going for longer but it then takes a couple of days to recover.  Following her exertions over the weekend Maureen is now in recovery mode: needing far more sleep than normal.

It would be foolish to push anything until Maureen gets her breath back after her cover up exercise on Sunday.  At the moment she is pottering around the house, and we have ventured out for short periods of time.

I declined to push her to choose new glasses yesterday.  It would have been unwise to encourage her to make choices: not something that comes easy following stroke.  So the mission at the moment is to keep things nice and easy and minimise distress.   We did manage a late evening stroll to the convenience store and I pointed out one or two landmarks in passing.  Maureen befriended a dog of a neighbour on our stroll – something I will return to later in the week.

If the escape from Maureen’s  prison is going to be  successful  it has to be well conceived.   It will only work if the route is well planned – otherwise she is in for a life sentence.   We made a start in that direction yesterday.   However, any attempted breakout at the moment would be doomed to failure: she just hasn’t got the energy to ‘go on the run’.

Today’s Motto: Three posts a day keeps Prescribed Disengagement  at Bay!

I want to try to address Maureen’s feelings about being a prisoner.  There appears to be a simple way forward and I have a ‘cunning plan’.

I am going to encourage Maureen to make trips to the local shops.  This will involve her learning the route to a local convenience store and bringing back a bottle of milk.   It will take me a while to help her build up the confidence to ‘go it alone’, and it will be very interesting to see how we go about this exploration of her ability to learn.

We may well start today with a simple walk together to the shop.  There is only one way to approach this task: ‘slowly slowly catchee monkey’.  I will keep you posted on how my plan to support Maureen’s escape from her bonds progresses.

I am posting much earlier this morning as I will be leaving for London in a couple of hours.

Any reader of this blog will have noticed that I have not spared my words when I have felt that social workers have got things wrong.  However this morning’s post is to heap praise on three social workers.

Firstly, Sue our new social worker has made it possible for me to have today in London visiting my daughter. Secondly, two social workers in Coventry have sorted out the mess my brother has been in.  My sister in law now reports that John is being bathed on a daily basis and in her words ‘looks lovely’.  It is such a relief for myself and Jean that we now have social workers who are being supportive.

I have just had to break  from this posting this blog as I have just heard something that has gone bump in the night, wel 4.45 am.  Maureen has slipped on the floor of the bedroom and thankfully no damage done.  She has just asked me: ‘if she needs to get up now to help me to do anything’.  I have taken her the requested drink of water and encouraged her to take more rest.  There is no point in remniding her I am leaving for London in a few hours as it is likely to cause distress, and prevent her from sleeping.

I am really looking forward to seeing Anna as it is a while since we had any quality time together.  The last time she visited us we were consumed with meeting Maureen’s needs,and hardly had any time to catch up.  When you have four children it is something of a luxury to get to know how things are going for one of them.  Like all my children Anna is a lovely person, and her honesty is commendable.  So I am really looking forward to a forthright exchange on all sorts of issues.

Today is something I have been working on for a long time.  It has been frustrating that it has taken so long to establish a pattern of respite that enables me to be more than a Care Partner to Maureen.  I have had several frank exchanges on Talking Point about my aspirations to be Man rather than Martyr.  But just as: ‘once you have met one person with dementia: you have met one person with dementia’.  It is equally true to say when you have met one Care Partner you have met one Care Partner.  We all have to find our own way of dealing with dementia!

One piece of advice about the brain is: ‘use it or lose it’ to seek neuroplasticity.   However, as we have been cast adrift by the Services in this area we have been  left to find our own ways of helping Maureen’s brain repair itself by developing new neural pathways.. There are lots of  groups or activities that Maureen and I could attend in the community but it is not as simple as that.  Maureen is averse to attending groups that label her, and place her alongside others who have memory issues.  Therefore my approach is to provide in-house cognitive stimulation.

With my background in adult learning I am used to trying to find different ways to get a message across.  However, I have a feeling that on  occasions I may be exposing Maureen to far too much stimulation.  My concern here is that tiredness will lead to frustration and become counterproductive.

If you met Maureen when she has energy you would not believe she had experienced stroke or been diagnosed with mixed dementia.  On most days my intelligent wife is around for significant periods of time.  When she is tired a different woman is in residence.  My task now is to accept that it exhausts her to process, and make sure activity is always followed by rest.

I am generally full of ideas that provide cognitive stimulation.  Early yesterday morning we had our own version of ‘Singing For The Brain’,  a little later on we were speaking in French to each other.  As Maureen slept off our busy morning I decided that we would coast for the remainder of the day.  So I resisted nagging her to respond when the phone rang in the afternoon.   She doesn’t like using the phone at the best of times.  Therefore I respected that she didn’t want to take a call, even though she knew it was probably her son.  As she said: ‘if it’s important they will ring back’.

Each day new possibilities arise for cognitive stimulation, and I have to work with Maureen’s mantra of: ‘slowly slowly catchee monkey’.  Our journey with dementia is not a sprint – it is a marathon. The exciting thing is that in training, on most days, Maureen often achieves a personal best!