Dementia: ‘This Is Not Sustainable’

Sometimes it takes a stark comment from someone else to help you take a reality check on a situation I was recounting to Maureen’s youngest son that I was following her down the road after she had just told me: ‘I’m going to go out and look for Paul’, when he commented: ‘this is not sustainable’.  He makes a fair point: I need additional support to cope with Maureen’s current presentation.

Three, three hour carer sits is no longer adequate as Maureen’s condition continues to take a turn for the worse.  We have no idea if this a temporary dip or further decline.  The positive thing is that Sue, our social worker recognises the need for flexibility in our Support Plan. It hasn’t helped this week that Christmas Day deprived us of carer attendance, and New Year’s Day is likely to do the same.

As today is a Bank Holiday I have to tough it out until Tuesday. Thankfully I have some help today.  There is so much going on at the moment that it is difficult to know what to do for the best.  One thing that appears to be happening is that Maureen’s confusion is now frightening  her.  It’s no longer just a question of her not knowing who I am: she is now frightened by her poor memory.

Yesterday evening she broke down as she told me of her fears of strange men in the house, who are continually trying to get into bed with her.  She said these fears arose when she was in hospital, when she heard groups of men discussing their plans to get into the beds of confused women.   Her recollection was of men suggesting that they could tell medicated females they were their husbands’, and be able to take advantage of their confused states.  A little later on she admitted that she was often unsure which Paul I was out of the ‘teacher’, and her ‘husband’.

Early this morning Maureen has woken up distraught, once again, that she is late for school .   I tried to settle her with a drink, and gathered following an enquiry about the state of her sore mouth that she didn’t see me as her ‘husband’.  I therefore, retired to the spare room.  At 2 am Maureen is up and about tidying up in the marital bedroom: it looks like another long day.  The good thing is she is taking the benefits of being bilingual seriously, and singing a song in French about a cuckoo in the forest.

I plan to be on the phone on Tuesday morning to both my Admiral Nurse, and our social worker to discuss Maureen’s presentation.  Listening to Willie Nelson  helps, and lots of other strategies keep us ticking along but Maureen’s behaviour continues to be extremely challenging.  Confusion about day and night has been around for a while but early morning wakening is now creating unhealthy sleep patterns.  More is needed on several fronts to minimise Maureen’s distress, and I need additional support reduce the chances of Care Partner burnout.  This is  an unforgiving journey and we are fortunate that we now being supported by a social worker who is a dementia specialist.

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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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