Dementia: Facing Reality

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I felt tired and completely overwhelmed by our situation yesterday.  Throughout the day I struggled to cope with my environment.  Maureen’s presentation fluctuated at such a rate that at one stage I doubted who I was and where I lived.  Our builders, along with two joiners, were making such a racket that any thoughts of a siesta were out of the question.  The shell of our Day Room was being used as a dumping ground and resembled a bomb site.  Towards the end of the day, I began to wonder whether I had got carried away with the ideas about a Day Room and was failing to face the reality of life as a Care Partner.

Maureen woke very early this morning and I tried a bit of Barney to cajole her into the marital bed:

This was a person-centred approach as Maureen loves a lot of Barney and will always join in with the chorus.  Once again she was ‘having none of it’ as they say and went on to berate me for ‘never being at home or often in the bed of others’.  It didn’t take me long to understand that she was confusing my behaviour with ‘her previous’.  However, shifting tack again did the trick and led to a really positive outcome.

I decided to give Maureen space before turning on Mr Nice Guy by telling her about my faltering attempts to return to drawing.  After describing my struggles with the pencil yesterday I told her that I wanted to attempt to sketch her while she was sleeping.  She then asked me what I wanted to do today and I suggested going for a walk on the beach and collecting shells.  We made this a date and collection will begin later – weather permitting.  If our mission is successful we plan to paint the shells and add to the collection that we already have from the efforts of our grandchildren.

The reality of this morning is that Maureen may well forget about our planned walk on the beach.  What I have to face is that I can’t go on like this: no-one could or should be expected to.  The demands being placed on me are unsustainable.  This became obvious when I met our Key Worker last week.  He was uncomfortable with my plans to engage a carer for a 48-hour stint so I could have a break.   Any reader of this blog will be aware of the exhausting sagas that have followed previous ‘Respite Breaks’.

I have not been able to sleep, and have been ruminating over our situation, since my early morning awakening.   A ‘Respite Break’ is far from the solution, in fact, we have been worse off after a period of separation.

The ‘shell seekers’ have to come up with their own solutions to the challenges we now face.  Some of my initial thinking has been along the following lines:

  • Using carer sits to reduce my involvement in domestic tasks and cooking.
  • Exploring the possibilities of short breaks together.
  • Exploring new activities together and with others.
  • Seeking advice on how to make our home more dementia friendly.
  • Reviewing the outline plans for our Sun Room.

There is no doubt that the level of support we receive in our neck of the woods is exceptional.  The attempts to support carers and their partners in a person-centred way are genuine.  However, the reality is that I’m tired and ‘Respite Breaks’ have not worked: so we have to try something different!

Footnote:  Just as I am about to post Maureen is campaigning to be taken home.  She doesn’t want to stay in here any longer as she is now fully recovered.  I doubt we will make the beach this morning but the aspirations of the ‘shell seekers’ remain viable!


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