Dementia: ‘Early Onset -You What?’

Charlotte breezed into our lives at noon yesterday and struck up a positive chord with Maureen as soon as they met.  Maureen greeted her with a lovely smile, and they were off as if they had known each other for a life-time.  I stayed around for the whole time that Charlotte was here to provide an ad hoc induction to working with us.

As the afternoon progressed there were lots of opportunities for Charlotte to see Maureen in a functional mode.  In some ways it helped that my antibiotics had gone missing.     Thsi gave Charlotte a chance to see  the absence of logic and rational thought first hand.  It also gave her a stark introduction into Maureen’s ability to recall.

Charlotte stared in disbelief as Maureen repeated the same questions time and time again.: ‘what type of box were the tablets in – when did I last have them- why didn’t I phone the doctors- were they in here, there, or any where?’ and on and on. She soon realised that the information that she had been given about Maureen was sketchy, and out of date.

I have to take some responsibility for only giving Charlotte basic information, when she phoned up to introduce herself the day before.  That is why I stayed around for her first visit: I will do much the same today.  What concerns me is the scant information that social services pass on when they are referring clients.

It is possible that Maureen may have settled at the Day Centre on Wednesday had they known a little more about her.  All they were given were name, rank and number.  I think this is completely unfair on all concerned and is something I aim to address.  Part of me thinks I shouldn’t have to but I will to protect my wife.

One of the outcomes of yesterday afternoon is a confirmation of my Mission Impossible Blog.  Maureen remains eloquent, and can confabulate with the best of them. Therefore social services classify Maureen dementia as early onset.  Anyone who sees her in functional mode, would smile at such a description of her capacity: as Charlotte did.

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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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6 Responses to Dementia: ‘Early Onset -You What?’

  1. Anonymouse says:

    It is cleat that you want and expect others to provide background information on Maureen but surely the onus should be on you to do so, as you are the one who knows her best of all. An outline of what Maureen is capable of should describe everything about how she functions, the good and the bad, so that whoever comes across her in a supporting capacity will have some understanding of how she really is.
    Don’t forget that the professionals are dealing with a huge caseload of clients and cannot be expected to have such detailed knowledge of each one. If they were to prepare a written report on her, then you should have input into it and knowledge of what it says, otherwise you are likely to object that they are misrepresenting her.

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    • Remember Me says:

      I have already done that using a very basic pro forma. It should have been passed on to the Day Centre and new carer by our social worker. Only giving the equivalent of name, rank, and number when they refer clients is irresponsible.

      What I need to do now, as I was alluding to in my post this morning, is give more detail and make sure it is a reference point for all those who are working with us.

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  2. Anonymouse says:

    I don’t understand when you say that part of you thinks that you shouldn’t have to….. in an ideal world those of us looking after people with dementia shouldn’t have to do a whole heap of things but we do it, unbegrudgingly, because we want to do everything we can to make it easier for the person we care for and we just get on with it. If you wait for others to do what you CAN do NOW, you will wait a long time and they won’t do it half as well as you can.

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    • Remember Me says:

      I am on duty 24/7 and sometimes I make choices about how I spend my time that in retrospect I regret. This is something I need to do but my list grows by the day. I had submitted a very basic proforma as a holding document. Even that has not been used. I am tired and the point I am making name, rank and number is not enough when social workers are referring clients.

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  3. So glad Charlotte and Maureen hit it off so well.

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    • Remember Me says:

      Great again today sound woman that Charlotte. Will be blogging on how we inducted her tomorrow. I think this is a way forward: hands on induction rather than papers talk. I realise it’s horses for courses but Maureen told her what she wanted her to know. Reading it on paper is just not the same. See my blog tomorrow for more on this.

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