Dementia: Time To Call A Halt To This Madness

Featured imageThere had to be some changes in the initial plans for D Day following the arrival of a new kid on the block.  When our carer arrived for the morning sit I realised we had never met her before so I asked her to leave.  She fully understood Maureen’s need to have people that she knew around her and happily went on her way.

There had been some crossed wires with our social worker and the review of my Carer’s Assessment will now take place on Friday.

One of the outcomes of Tracey’s meeting with Maureen yesterday afternoon is pictured on the right: packing to go home .  Maureen experienced discomfort and upset following her visit.  My conclusion is that these visits may satisfy regulations but they are unhelpful as far as we are concerned.  They appear to achieve little that is of any help for either of us yet cause considerable distress.

I am unclear if the problems are structural or more about the way an individual carries out her statutory duties.  I accept the need for social workers to carry out capacity assessments on specific matters.  The social worker has to explore with Maureen the nature of the care she would prefer if I am to be away from home for a day or two.  What I struggle with is her constant need to try to encourage Maureen to move outside her comfort zone.  Encouraging Maureen to take ‘baby steps’, and that is what is needed following stroke, is my job in conjunction with carers.  We toddle forward with that focus in mind day after day: we are sensitively relentless on that front.

I am not surprised that Maureen was packing to go home in earnest last night.  I am also not surprised that she was unable to do her normal washing up stint:  the kitchen looked like a bomb site after her efforts.  I am not surprised it took her around half an hour before she was comfortable in bed and I could switch the lights off.  It is obvious what caused her to go off the rails as soon as the social worker had gone.

Well my focus is clear this morning: I have to find a way of bringing some sanity into proceedings. I have to find a way to call a halt to this madness.  Maureen has just woken in tears asking ‘Why do I have to stay here in this Care Home?   Why can’t I go home and be with my  family?’  and much more.

Wish me luck if you can: social workers don’t take too kindly to telling them they ‘don’t understand dementia’.   If they did why do they persist in talking to someone at length who only has an extremely short concentration span?  Why don’t they realise Maureen will pick a negative out of the conversation on dwell on it?   I wonder what it will take to get them to listen to care partners, rather than concentrating on their statutory duties?  Well I may be in a position to let you know very soon.  Fortunately, I have  appointments to see the Head of Casework and the Assistant Director of Strategic Planning for the Clinical Commissioning Group in my diary .

I often reflect on why I chose a Masters Degree in Continuing Education and the Management of Change for my year’s secondment at Warwick University in 1987.  Well I think I know why now!  What good fortune that the internet means that I have resumed contact with Tom Schuller my Supervisor from Warwick.   I think he is still keeping a watchful eye on his student even after almost thirty years have passed of the parting of our ways.   Even during my retirement he is   suggesting relevant reading material –  yes Tom I have skimmed the opening passages of Musicophilia by Oliver Sacks!

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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: Time To Call A Halt To This Madness

  1. Jenny says:

    First I have to pick on your comments about your studies all those years ago …. so interesting. I really believe it all has a place and I am sure that my interest in medicine (although I never made it as a career) and the volunteering I did as a result was a preparation for being a mum of a very special boy.
    But how distressing for Maureen to be subjected to these SW visits. Sadly I think you are right that although she might not like hearing it, so many professionals don’t understand dementia. And why should it be the job of care partners to enlighten them, you have enough on your plate.
    I love Ollivers Sac’s books, I hope you enjoy it. Very sad that we lost such a clever man this week.

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  2. Remember Me says:

    Thanks Jenny It must be hard to understand dementia unless you have lived with it 24/7.

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  3. Peter Lane says:

    Carpe deum Paul seize the day for what you know is right , what you have to do and what you have obviously been prepared to do

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    • Remember Me says:

      Great to hear from you Pete. How wonderful that my ‘Best Man’ from all those years ago and my partner in midfield is still in my support team. I will make it one day to Australia to see you and Dot.

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