Meetings with our social worker today should help to establish a platform from which to move forward with our lives.  This morning I am meeting with her to begin a review of my Carers Assessment.  This afternoon she will be calling at our home to chat with Maureen.

There is little doubt that that Maureen’s presentation has changed since Tracey was here a month ago. The  periods of abject confusion have become more frequent, as has the out of character behaviour. Maureen’s capacity to carry out basic tasks has dwindled and she requires more prompting to cope with daily living.   Tracey plans a number of visits so that she can see beyond the confabulations, and the hostess mode, that Maureen usually resorts to when assessment is underway.

I imagine conversations about Maureen’s care needs will highlight her capacity to consider her own welfare. It is likely that a ‘best interest decision’ will be needed to keep Maureen safe when I am out of town visiting family.  Maureen’s previous assertions that she is safe to be left alone for considerable periods of time needs to be reconsidered.  All of this will raise the thorny issue about attendance at Day Centres and the like.

Today is an opportunity to start the ball rolling on a review of our Care Plan.  I am hoping it is the start of a process that enables me to have a life alongside my role as a Care Partner.

It is time to address the fact that I am now Maureen’s Care Partner rather than her husband.  As I argued in yesterday’s blog: From Husband to Care Partner the change of role comes with a diagnosis of dementia.  So as with any role there needs to be a Job Description and Terms and Conditions of Employment.  What follows is a draft Job Description that I have edited from a document on the Internet.

Job Description

Care Partner for Maureen

Role Purpose

• The role of the Care Partner is to perform duties and tasks to enable Maureen to continue living within the comfort of her own home in a safe and secure way. To offer a level of care which promotes; dignity, respect and choice.

What the role involves

Deliver Companionship & Personal Care

• Deliver companionship and personal care in line with Maureen’s bespoke Care Plan.
• Companionship duties may include:
• Providing support and encouragement to empower Maureen to lead an independent lifestyle
• Providing companionship and conversation
• Shopping for the weekly essentials
• Meal preparation and cooking
• Joining and assisting in hobbies or crafts
• Accompanying Maureen to appointments
• Driving Maureen to desired places
• Communicating with healthcare professionals on Maureen’s behalf
• Personal Care may additionally involve:
• Assisting Maureen to get up, dressed and preparing her for the day
• Assistance with eating
• Assisting with prescribed medication
• Working closely with other care professionals such as GPs
• Assisting Maureen to go to bed

• Recording and Reporting:
• To report if there are any changes or causes of concern in a Maureen’s condition.
• Health and Safety
• To ensure that Maureen’s environment is safe, secure and dementia friendly.

Ends

Drafting a Job Description is fairly simple.   Sorting out the Terms and Conditions of Employment are more problematic.  I suppose you could argue this is all part of the Marriage Contract: ‘until death us do part’.  However, I think there are caveats in the deal somewhere; with both parties have rights as well as responsibilities.

The other issue of course is what is the working week?  Can anyone be expected to be on call 24/7 and retain the ability, let alone the energy, to fulfill a very taxing role?  There are then issues about line management and support to be considered.  It is perhaps sensible to leave these matters until tomorrow.  The important aspect of this post is an acceptance of the new reality: I am no longer Maureen’s husband – I am her care partner.  Maureen is no longer the woman I married: she has dementia and most of the time the condition calls the shots.

I didn’t realise at the time but once Maureen was diagnosed with dementia my status changed.  I walked into the Memory Clinic as a husband: I walked out as a care partner.  Perhaps that was one of the things  the Consultant meant when he said : ‘You need to accept your new reality’.

This same point has also been made by the counsellor at our Medical Centre.  Never one to shy away from the realities of life, Paul said something along the lines of:  ‘ You need to accept that you are now Maureen’s carer; rather than her husband’.  He makes the point that interaction is never the same once your role changes from husband to carer.  It has taken me a while to accept this aspect of the new reality.

As I said in my post yesterday: It’s the Environment Stupid, I have to turn our house into a Care Home.   I need to make this place dementia friendly and seek to avoid distress.  On duty 24/7 I need to forget about my own needs and think of my wife’s – the cared for one.  Fortunately, the  prospect of dealing with my own needs is on the horizon.

When I meet our Social Worker on Friday, for a Carers Assessment, I need to explore how to develop ‘me time’.  Tired and frustrated care partners cannot deliver the quality of service that their loved ones deserve.  It is not easy to achieve a balance in all of this but the opportunity to tip the scales in my favour looms.  It is up to me to take it.  I am not kidding myself that this will be easy at either the practical or emotional level but I need to make it happen.

There is a simple way of progressing my role as a care partner: to treat it as a professional appointment.  I need to work from a job description and have a development plan.  This is a framework I am familiar with from my professional career and  would fit the bill for what is needed RIGHT NOW.  So my way forward is clear – just have to get on with a bit of writing.  Guess what my post will be about tomorrow?

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.