It is time to do something that I often struggle to do: to listen to other people before I continue to plough my own furrow.  My body and other people are telling me I have to change my ways or my efforts to keep Maureen at home for as long as possible will fail.

My plans for tomorrow are a typical example of my belligerence.  A 14 hour day filled with emotion can only leave me drained and my immune system further weakened.  I would only return from my trip to Coventry exhausted, unfulfilled and unfit to look after Maureen.

It is 4.30 am and I have been lying awake for a while; reluctant to face reality.  At 70 years of age, I am ‘no Spring Chicken’ as Gary our social worker kindly pointed out the other day.  There are no days off for  a Care Partner and I need to be on my toes 24/7.  Therefore, exhausting day trips to Coventry have to become a thing of the past.

I simply have to bite the bullet and schedule a further stint in Ashgrove Care Home for Maureen.  Then I can have an overnight stay in Coventry and drive back safely the next day.  This will also mean that I can take my mum out for a ride in the car when I visit.  She will forget that I have been as soon as I get on the M69 to travel back to Cleethorpes. However, seeing the pleasure on her face as she navigates a ’99’ in the front seat of our car,  as we sit in the car park of Coombe Park watching young children play, is something I will never forget.

I hope those people who have kindly facilitated a 14-hour carer sit tomorrow will understand my need to review my plans.  Perhaps they will take some solace that I’m showing signs of being prepared to listen to what they have been telling me for quite some time!  I will also seek an appointment with our G P this morning to discuss several things that are a cause for concern at the moment.

I was sorting out some of my paperwork on dementia yesterday and came across ‘Compassionate Communication with the Memory Impaired’ by Liz Aires.  I scanned it again at the time and hope I remembered the basics at 2 ‘o’ clock this morning when Maureen woke and demanded to know why I was in her bed:

Compassionate Communication with the Memory Impaired

by Liz Ayres
A Volunteer of the Alzheimer’s Association and Former Caregiver

DON’T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.

DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate ‘but’ from your vocabulary; substitute ‘nevertheless.’
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.

Maureen’s response to my explanations was to suggest divorce if I wanted to behave like a teenager and get into bed with anybody!

My post yesterday on Unison’s Ethical Care Charter has got me thinking.  Where is the Charter for Care Partners?  Which is the best organisation to support us in our struggles  for adequate support to prevent Burnout?

Maureen has been awake since 1 am this morning; despite my best efforts to persuade her to go back to sleep: it’s time to seek further help on this front.  It’s fortunate I’m meeting Gary, our social worker, this morning as getting more rest by securing regular respite will be an important feature of our discussions.  Attending meditation sessions like I did yesterday are helpful but they can’t compensate for the sleep disturbance that is  feature of my life at the moment.

I have just caught sight of Unisons Ethical Care Charter which is on the Agenda for our Branch Labour Party Meeeting on Friday.  I hope the Charter becomes adopted throughout the United Kingdom, so that those who work in the secto,r and those who need their services, get the deal they both deserve.

I think Maureen got the days mixed up yesterday as Saturday became a day of rest.  She spent most of the day sleeping on the sofa and stayed there all night.  This could have  been another one of those ‘Duvet Days’ that we were told to expect following a stroke.

We both had a relatively restful night, apart from one incident where Maureen told me I would be in trouble with the police.  She warned me that I faced arrest for ‘taking people off the street and locking them in my house’.   That early morning warning has soon been forgotten to be replaced by: ‘what are we dong here; why I aren’t I in my own house?’

It is cool and dismal this morning and my challenge is to see if I can entice Maureen into some sort of activity.  I’m rather concerned that as Autumn progresses into Winter the coolness of the air will make ‘hibernation’ a distinct possibility with attendant deterioration.  I simply have to find ways of encouraging my butterfly to take to the air or she will forget how to fly..

A couple of weeks ago I decided that solving a jigsaw would be a good way of spending these Autumn evenings.  My first venture was a complete waste of time as my purchase from a charity shop was very incomplete and I promptly returned to the shop.  I spent a couple of hours on a replacement, from our local library, last night.  We had YouTube on in the background as I struggled for a couple of hours trying to make start on a 1000 piece puzzle.  Maureen sat patiently by my side as I desperately searched for a starting point on my new venture.  This morning I have put all the pieces back in the box in preparation for its return to the library .

Yesterday afternoon, when I met Gary our social worker, I had some success in trying to find the missing pieces in my Carer Support Plan.   We explored two options for setting up regular respite.  Firstly, through a three-day break every month; with Maureen going into a Care Home.  Secondly, through a half day break  every other Wednesday supported by Carer Sits..

I’m optimistic that our outline plans from yesterday’s meeting will come to fruition.  I also think that a little bit of clock patience  might be a more inclusive way of spending these dark evenings.  All I need to make sure of is that we have a full pack of cards!

This morning I’ve arranged to call into Ashgrove Care Home to discuss their perspective on Maureen’s five days of residence.  I want to see how they felt she got on in her longest stay in residential care so far, and compare it with what she says, and I saw.  I can then   feed this into my discussions about future respite breaks when I meet our social worker tomorrow afternoon.

It is clearly difficult and more expensive to arrange home-based care for periods of respite.  However, this needs to be balanced against the impact on the individual.  Another alternative is to consider holidays together in supportive environments.  One thing is for sure: all Care Partners need adequate support and time off.  Why should such arrangements be anything other than person-centred?

Our target last week was quite simple: to enjoy being together again after Maureen’s stay in Ashgrove Care Home.  This week promises more of the old routine with Carer Sits, once gain, in place for the next seven days.

High on the Agenda this week has to be planning for further periods of respite.  Any Care Partner needs to know when they are going to have the next significant break from being on duty 24/7.  I really benefitted from my respite at the Buddhist Centre and need to plan such breaks on a regular basis.  I would also like to explore the possibilities of a Winter Sun holiday before the end of the year.

One of Maureen’s reactions from her stay at Ashgrove was to suggest that she would like to have a holiday.  Togetherness has always been a feature of our marriage;  it would be lovely if we could resume our visits to Portugal during the winter months and feel the warmth from a stay at Madyhamaka together. This is something I aim to reflect upon in the coming week.

Good news on the sleeping front: my novel approach is working.  I’m now on my second book – The Sound of Trumpets by John Mortimer.  When humming the Brahms Lullaby fails to do the trick, picking up a book is helping me to get back into a sleeping mode.