I have to admit after 18 months or so being a care partner for someone with a diagnosis of dementia none of this adds up.  What I mean by this is the current arrangements for supporting families where dementia is unwanted guest do not make sense.

I have already made the point that dementia does not belong under the umbrella of mental health.  Dementia is brain injury it is not a condition of the mind.  It is a as simple as that. Therefore treating it as a mental health condition leads us down a very dodgy path.  I have previously blogged on ‘Ditch the Dodgy Drugs’.

The approach of social services to supporting cared for ones, and care partners, also does not add up.  It is possible that the new Care Act has complicated matters and added to the burden of busy professional staff.  Their work load may not compare favourably to a care partner, on an endless hours contract; where the terms and conditions are shrouded in mystery.

I do not understand why a third part needs to assess Maureen’s capacity about her own welfare.  Why do we need another opinion on her presentation when her care partner and ‘adopted daughter’ see it day after day.  At a time of economic austerity it does not add up that we can afford to pay someone else to pop in to assess capacity.

What would add up is clarity of the entitlement of those who have dementia and their care partners.  That would make sense and make trying to have a life with dementia a heck of a lot easier.

Yesterday illustrated how thing can change so quickly with dementia.  The day and early evening went extremely well.  We did lots of things together: laughing our way through the day; joking about all sorts of things.  Late afternoon we popped round to see Maureen’s aunty, to get the latest on her uncle, but she was out.  No matter we called into the chemist across the road and Maureen’s blood pressure was spot on.

I tried and failed to get Maureen to rest during the day.  She had one or two attempts to have a nap  but couldn’t seem to drop off.  At around 8.30 she finally curled up on the sofa and slept solidly until I awoke her to go to bed, a couple of hours later.  I immediately knew I was in trouble.

It took me a while to persuade her that she had a bed upstairs and this is where we lived.  She left me in no doubt that she didn’t want me in the same room as her, so I retired to the spare bedroom.  A few hours later the coast was clear and I joined her in the marital bed.  This type of performance is not unusual: i am getting used to the routine by now.

My sentiments of TGIF are not because the week end is extended by a day with Bank Holiday Monday.  There are no holidays for care partners.  In fact getting respite round here is no picnic:  I will return to that in a later post.  No the reason I am pleased it is Friday is because our ‘adopted daughter ‘ will be here in a few hours.

Chloe is the one person, apart from myself, who has any understanding of Maureen’s current presentation.  She is not one of those ‘merchants’ who pops in and sees Maureen in the ‘hostess mode’.  She has seen the abject confusion and heard the repeated questions that are around on most days.  Her involvement has been ‘hands on’ rather than academic.  Chloe is the only person I can run things by and be confident of her point of view.

There are a couple of things I need to chat over with Chloe.  I need to try to make progress on the clothing crises and visit family.  Chatting things over with Chloe is as good as it gets.  She is not ticking boxes or seeking an expedient solution to difficult situations.   Chloe has our interest at heart.

Just one other point: Chloe understands dementia her expertise is based on getting her ‘hands dirty’ for years.  She also knows not only how to spell empathy; she exudes it.  If only those who earn far more than Chloe would take the time to learn from  the likes of her, and care partners, life would be so much easier for Maureen and I.

Any reader of this blog might think this guy has a lot to say for himself but what does he really know about dementia?  So I will spell it out:  I have read a bit and been fortunate to have made contact people who have some ‘know how’ in this field. I have extolled the virtues of Talking Point many times on this blog; those who post on that Site are the real experts.  They have lived dementia 24/7 and their expertise is ground in experience.  Somewhat different from popping to help for the odd hour or two or attending a training course.  Yes you might say ‘smart guy’ that you but are what are you actually doing that  is worth writing about?

I think my approach to ‘in house cognitive stimulation’ is worth writing about.  Just a bit of detail gives a flavour of what I am about.  Maureen is in good form this morning up early and lucid.  She has been helping me in the garden before breakfast.  Our small vegetable patch is been transformed in preparation for Autumn.  Her planning skills have been paramount in the adjustments we have made in an attempt to maximise crops.

Boyzone have been on in the background as we have been ‘farming’ as we call it.  Mike my neighbour popped his head over the fence and we chatted to him about Circuit Training in the garden.   We told him of our wild ideas to open up our facilities to paying guests.  As we ate breakfast Rhonan and the Boys sang Love Me For A Reason and I mimed the words and danced around as the music rang out.

All of the above, and more, are on offer in some form or another on a daily basis.  Maureen does not need to join Groups or go to Day Centres.  Individual Cognitive Stimulation Therapy needs to take place in the home day after day.  Maureen will have a nap very soon and I expect she may forget the antics of the morning but ‘such fun’ as Miranda’s mother used to say!