Dementia: Preparing for A Carer’s Assessment

It is still unclear to me what any carer is entitled to In North East Lincolnshire.  We had a generous Care Plan when Maureen came out of hospital following stroke.  I believe the usual arrangements in this are are to offer a 6 week package. Within a couple of weeks we said we didn’t need the early morning, and evening calls, as Maureen has never needed personal care.  Later on we reduced things even further to the current arrangements of 3 hours on Monday, Wednesday and Friday mornings.

In the early days I heeded advice to ‘skid addle’ as soon as a carer arrived.  With take your ‘me time’ as my mantra I followed all sorts of pursuits.  Lately I have let some of my regular hobbies fall by the wayside, in response to the dynamic nature of things here.  As Maureen’s presentation has changed I have played it by ear to provide support to my wife and carers.  Things got particularly difficult a month or so ago when Chloe, one of our regulars carers, went off for a three week period on honeymoon.  Now that our ‘adopted daughter’ is back it is time to review the best way forward.

It is clear that Maureen has responded well to me being around more.  It must have been awful for her to think i couldn’t wait to get away as soon as a knock came on the door and a carer clocked in.  In retrospect I played that one badly. Panicking when Maureen has taken herself off for a stroll has also not helped.  The scars from these tactical errors remain and are evident from Maureen’s ongoing dialogue about: ‘feeling like a prisoner here’.

I would contend that after a dodgy performance in the last few months there is room for optimism on a number of fronts. Maureen’s mood at the moment is fine and we are having lots of fun together.  She enjoys, and jokingly moans about, her household duties: ‘I am not going to run a Guest house again’; is how she might put it.  Perhaps, a reference to helping her grandmother here over 60 years ago.  However, as she puts it: ‘if I don’t continue to do stuff around the house i will have nothing to do and forget how to keep the house clean and tidy’.

I am a little nervous about what lies ahead.  It must be really difficult for any social worker to assess Maureen’s presentation.  They are likely to see the ‘hostess mode’: Maureen at her best to prevent them ‘locking her away because she is mad’.   The other factor that has to be overcome is the implications of the new Care Act.  It is also possible that dwindling Local Authority resources will mean that finances are a significant factor in the support on offer.  It is not easy to establish what we are entitled to under new arrangements for supporting Care Plans.

So there is some hard thinking, and talking, to take place over the next couple of weeks.  Maureen does not need ‘baby sitting’ as she puts it: she continues to make remarkable progress following stroke.  We are hindered in all of this by dementia being placed under Mental Health rather than Brain Injury.  Therefore suggestions about Day Centres, Clubs and the like are unhelpful.  We are a married couple who remain close: we do most things together.  All that needs sorting out is the best way for me to be a little more than a caregiver.  This requires some clear thinking about best way to support Maureen; when she wants to stay at home, rather than join me on my travels or in various pursuits.

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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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2 Responses to Dementia: Preparing for A Carer’s Assessment

  1. Jenny says:

    Frustratingly care packages do seem to be a postcode lottery. It is the same in Scotland where we live. Hopefully you will get a chance for a private conversation with the social worker to make sure he or she understands that they may be seeing ‘hostess Maureen’ at her very best.
    A very quick explanation of personal budgets would be that it is a transfer of funds with which the LocAuth would purchase care for you to the end user who can then spend that budget in a creative way, not just on care hours. The problem is that it can take months to get the paperwork done so if it is of interest you need to get the ball rolling. There is also a lot of misinformation out there (from professionals too). Looks like Alzheimers UK do a good factsheet.
    However I suppose you are getting a carers assessment and not an assessment for Maureen (I guess you are happy that hers is up to date and sufficient?). So this really is all about you. If you want to be spending your time with your wife then maybe what you need is support to make that easier. I’m thinking out of the box … maybe your lovely carer could accompany you both on a couple of trips out so that you have an extra pair of hands and can relax a little more. It is all about working out what suits the both of you and not anyone else. Does that make sense?

    Liked by 1 person

  2. Remember Me says:

    Thanks Jenny it all makes perfect sense.

    Like

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