YesterdayI gained a much clearer understanding why Maureen’s experience in Ladysmith Road Care Home was so traumatic:

• The local CCG have changed where they commission beds for Respite Care.
• Ladysmith Road Care Home are not allowed to move residents from the Orchid Suite to a more suitable location.
•  Care Homes are being encouraged to reduce admissions to A & E.

If had known respite care was going to result in Maureen being placed in an environment that was far from person-centred I would have chosen to tough it out. My respite has been counterproductive leading to further stress and exhaustion.

Following my meeting with the Manager of the Home Treatment Team I now understand that the Best Interest Meeting is an opportunity to determine a positive way forward.  I believe there is now a genuine understanding of the need for a fundamental change in the approach to supporting us on this unforgiving journey.

I hope the following two paragraphs are self-explanatory:

‘North East Lincolnshire Council and North East Lincolnshire Clinical Commissioning have refreshed their policy on how adult social care resources (money and services) are shared between those who need them locally.  Our refreshed policy aims to guide us on what to consider when making tough decisions about how to spend money to maximise the help we offer to adults with needs.  We have to make sure that the way we spend offers value for money, whilst still promoting the wellbeing of the individuals we are here to support, in a way that helps them achieve what matters most to them.   

An online questionnaire has been created to seek views.  These views will be used to help us understand what matters to our local population, when thinking about how we ensure everyone has fair access to adult social care and support’.

I have only skimmed the questionnaire and it does not deal with the shortcoming of the current arrangements. I do not believe the CCG are: ‘promoting the wellbeing of the individuals we are here to support, in a way that helps them achieve what matters most to them’.  The bullet points below outline my assertion: 

• The whole system is shrouded in mystery with entitlement unclear.
• The Care Agencies that we have experienced are not fit for purpose.  Their staff are poorly trained with awful conditions of employment.
• Focus Social Work Staff do not have budgets and have to consult their superiors about expenditure.
• The CCG have bought respite beds in a Care Home that is not person-centred or fit for purpose.
• The Care Home where my wife was placed for Respite claim they are unable to make professional judgements about where clients are best placed.

It is likley that Austerity Measures have meant that the CCG have inadequate funds to meet the needs of their population.  I am aware that Kevin Bond the Director of NAVIGO resigned asserting that the CCG had failed to give the organisation a fair share of the cake. Our experiences in the last few months perhaps illustrate the point that Kevin has made and are a major contributor to my current level of exhaustion.

I have always thought my wife is an amazing woman who has dealt with lots of adversity in her life with dignity.

Her presentation this morning has been impressive; her rational thought sound and her logic intact.

In some ways her gentle nature is letting her down at the moment and it must be difficult to be assertive when dementia is a factor.

One thing I know is in my hour(s) of need she has always stood shoulder to shoulder through thick and thin and I’m with her on this one.  As she says ‘why do I need to go into a Care Home I saw last week what it does to people: it makes them worse’.

I’m optimistic that I can get some common sense into any discussions about Best Interest We all need a little more time before we consider the next stage of our journey.  Hence I am meeting the Head of the Home Treatment Team at 10.30 this morning.  I then move on to meet the Manager of Ladysmith Road Care Home to receive her response to my concerns.  This morning’s carer sit is so I can have some time to myself: I rest my case!

It didn’t surprise me yesterday when Maureen was found to lack capacity as far as her future care and welfare was concerned.  However after a troubled night and our early morning conversations I’m far from sure what lies ahead is in our Best Interests.

There is no doubt that professionals are trying to protect both of our interests: responding to the progression of dementia and a worn out Care Partner.  It may not be possible to do much about the former but the latter could have been prevented and even now could be alleviated.

It isn’t surprising that I face Carer Burnout when you consider how poorly I have been supported. The initial support from social services was so inadequate that a member of staff had to be taken off the job.  Our Care Agency is not fit for purpose and a replacement Agency at the weekend had fundamental shortcomings.   Occasional periods of respite may have been good for me but have always been a nightmare for Maureen.

Whatever happens next has to be in both of our Best Interests.  Our marriage vows remain firmly in place: it is until death do us part.  Why should the inadequacies of care in the community be allowed to separate us?  We are not going to be railroaded down a dead end: Maureen is not going to be warehoused and turned into a gibbering wreck!

We’ll be camping again tonight to recover from an unhelpful Carer Sit.  The poor woman had obviously not had her ‘card marked’ and thought she was chairing Twenty Questions.

Maureen demonstrated her capacity by going along with a cunning plan to be invited out to visit her brother in Nottingham tomorrow.  Her performance talking to no-one at the end of the phone was worth an Oscar.  Needless to say we gave the woman an early bath after 9o minutes sending her on her way half an hour early..

How reassuring that Team Collins are back when the going gets tough.  We combined so well to prevent a further investigation tomorrow.  I’m about to phone the replacement Agency to make sure we can continue with our camping holiday tomorrow with our usual Sunday Roast rather than another grilling.

We have had nothing but trouble with arrangements for respite and now we can’t even get an additional sit without it going belly-up!