Dementia: ‘I Feel Like A Prisoner’

I am posting earlier this morning as I will be leaving for London in an hour.

It is a sobering experience listening to your wife telling you that: ‘she feels like a prisoner in her own home’.  Yesterday morning Maureen was at pains to explain to me how she felt: ‘locked in and no longer able to come and go as she pleased’. I fully accept her feelings on this matter and am trying to address her concerns in a number of ways.vector illustration of a female convict behind bars....... bars are contained in clipping mask - stock vector

My intial response has been to explain the caution that has been applied to her recovery from stroke.  How we have all been very concerned to minimise risks, as she moved from feeling her way around, to finding her way around.  I also admitted that my anxious behavior had not always helped: panicking and calling the police on a couple of occasions has been a little over the top. Later in the day I tried another approach to attempt to help ‘the prisoner relinquish her bonds’.

Have to break off from posting this blog as I can hear shouts from upstairs.  Thankfully all is well but Maureen has been dreaming that she is being chased by an Alsatian.  I may not have mentioned before that she is frightened of dogs, as she remembers one attacking her mum when she was a small child.  So back to the prisoner issue ……

As the sun was shining yesterday afternoon I suggested that Maureen might go out for a while by herself.  I said I would leave her to go off for a while by herself.  I reassured her that if I thought she had been gone for too long I would come and find her.  For whatever reason she decided that she didn’t want to go out at that particular time.

I know that some of my colleagues on Talking Point will shake their heads at my approach to Maureen’s concerns.  I can fully understand their response to what might be seen as a reckless approach to Maureen’s welfare.  However , I would contend that my proposal is the next logical step in Maureen’s recovery from stroke.  She clearly needs to see that ‘my money is where my mouth is’.  I cannot keep saying: ‘she is making an incredible recovery from stroke’ and keep the chains in place.  Every day, and in every way, I have to keep repeating my message that she is not ill she is recovering from stroke.  Prescribed Disengagement will never be the way forward in this household.

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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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5 Responses to Dementia: ‘I Feel Like A Prisoner’

  1. Kate Swaffer says:

    I love it that you see ‘keeping the chains in place’ as wrong, and are being totally creative finding other ways for Maureen to be safe, whilst still having some freedom… well done!

    Like

    • Remember Me says:

      As you will be aware this is not easy balancing independence with risk. I have had to deal with challenge from those who think safety has to be the dominant factor in my role as Care Partner to Maureen.

      Liked by 2 people

      • Kate Swaffer says:

        Interestingly, I have just been interviewed on exactly this for a research project. The dominant theme I spoke about, was their need for us to be SAFE, versus our VERY BASIC HUMAN RIGHT to some autonomy. We need others (people living without a dementia) to find ways to support us to remain independent for as long as possible, even when we are progressing in he disease. Keep at it, you are both winners.

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      • Remember Me says:

        Thanks Kate for so many things. My blog today may be a little different as there is too much running though my head at the moment.

        Like

  2. Pingback: Don’t let Prescribed Disengagement ® disable you | Creating life with words: Inspiration, love and truth

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