Dementia: ‘ We Are Not Singing From The Same Hymn Sheet’

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.yes, no, maybe, I do not know - choice or uncertainty concept - colorful sticky notes on a cork bulletin board Stock Photo - 10299826

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.

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About Remember Me

I am a retired adult educator. My wife had a stroke in February 2014 and now has mixed dementia. Her recovery from stroke has been exceptional apart from 50% loss of peripheral vision and vascular damage. 'Dharma For Dementia' is my approach to being Maureem's Care Partner: it aims to end the suffering of 'Prescribed Disengagement' (Swaffer) .
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4 Responses to Dementia: ‘ We Are Not Singing From The Same Hymn Sheet’

  1. misifusa says:

    You are truly an inspiration. Keep up the great work with Maureen. You are both blessed to have eachother.

    Like

  2. Many of us out here can learn a lot from what you share about your approach and your work with Maureen. Thank you for sharing your experiences.

    Like

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