I think our luck may be changing as we try to find our way on this journey with dementia.  A chance conversation yesterday has opened up a new front on Maureen’s 50% loss of peripheral vision.

As I wandered around Cleethorpes yesterday morning I caught site of Pete’s wife as she stood at the till in her hairdressers shop.  Pete was in hospital at the same time as Maureen, as his stroke had taken place at about the same time.  The only difference being that Pete had been taken straight to the Stroke Unit at Scunthorpe to be thrombolised.  Margaret his wife then told me of other major differences that Pete had experienced in his treatment following stroke.

Pete continues to be treated as a stroke patient: whereas Maureen is seen as someone who has dementia.  Maureen was promptly discharged from the Stroke Team quite some time ago, and moved onto to the Memory Service.  They  discharged her with a diagnosis of mixed dementia as there is no traetment for the condition..

Pete has a diagnosis of Mild Cognitive Impairment and his treatment is still coordinated through the Stroke Team.   We are left to our own devices.   This could be the subject of further examination but it is visual loss I want to move onto next.

I didn’t ask Margaret for detail but Pete has suffered peripheral vision loss.  He has now been referred to a specialist eye hospital in Sheffield to explore possibilities, with the best expertise in the country.  This possibiliy came about through contact with the Blind Society.  Referral from Pete’s G P has led to an early appointment.

It is likely that I chose the wrong moment to share Pete’s path to Sheffield with Maureen. She was eating her breakfast and bantering with Chloe, the carer.  What it served to remind us of is Maureen’s recollection that a specilaist optician, at the hospital, had promised to make her some special glasses.  She has held onto this dream, and that is what it is, so we need to chase up an appointment.  Once that has come to its natural conclusion, and no glasses, it may be possible to revisit the idea a trip to Sheffield.

No matter which road we take next on our journey, Maureen believes it is possible to get her driving licence back.  Despite being told by several experts that she will never be able to drive again she still hold onto her dream.  Little point in challenging her dreams.  I always share her disappointment that the Care Agency don’t send Maggie any longer.   Maureen believes she was going to help  her to get that licence back.   I have never challenged this idea:  compassionate communication, or telling porkies, is often the only way to get anything approaching a peaceful life with dementia around.  I must also remember not to try to discuss important issues when someone is eating their breakfast!

There’s a verse from a song that I keep playing on YouTube that I can’t get out of my head this morning.  It goes something like this:

‘I never will forget him

For he made me what I am

 I miss him

The Old Man’

It’s not surprising that this song is reverberating around my head this morning.  I want to keep a promise that I made to my dad as he lay dying on a hospital bed.  I whispered to him that: ‘I would look after my mum’.  He would know that I would try to play my part in looking after mum following his passing.  He would understand why I have not been able to see her for three months.  He would also want me to look after Maureen.

Just taking the second line of the verse above: ‘He made me what I am’.  Jack Collins, as he was fondly known at British Leyland, was a great dad to me, my brother and two sisters.  He taught us all not to let anyone push us around.  He was always challenging those who had sold him short.  His letter writing to all sorts of vendors, who had not treated him fairly, would need to be seen to be believed.

I am also an ‘Old Man’ to four children – the youngest almost 30.  I have not been able to be a dad to them for quite some time.  They could quite legitimately view as me leaving them for a second time.  I walked out on living with them over 20 years ago.  It has not been simple to spend time with them in the last few years: I have allowed domestic matters to get in the way.  They have been very understanding over immediate pressure in my own life: some of them more than others.

I am having my first meeting with our new social worker this morning.  It isn’t surprising that  Finbar Furey’s song is in my head.  My priority has to be sorting out my promise to my dad, and becoming the Old Man to my own family once again.

I don’t know if I’ve blown it; I think it’s possible I talked too much.  The problem was I must have been storing it all up for our first meeting.  I’d known for a week or so that I would be seeing Mel for the first time yesterday and too much had gone on since Heather’s departure.  Oh – by the way Mel is my new Admiral Nurse.

We met at the same place I’d often met Heather.  The café at Harrison House, our Mental Health Unit.  It is a good place to meet.  It brings back so many ‘happy’ memories from my incarceration in the Unit, a few years ago.  Whenever I am in the building it serves to remind me of my recovery from a serious mental health episode.  Once inside the place my thoughts turn to Irving Kirsch and how his book started me on the road to escaping from a life-time on antidepressants.  It is on my ‘Bucket List’ to meet Irving in person.  I want to thank him personally for helping me to realise that it was how I was interacting with my environment, not ‘chemical imbalance’, that had been causing years of depressive episodes.

Being in Harrison House also helps me keep to the forefront of my mind that dementia is not mental illness.  No-one has been able to help me make sense of dementia being under the umbrella of mental health:  it is brain injury not a mood disorder   Maureen has had unhelpful experiences from a mental health approach to dementia and it’s attention to mood.  I recall staff from the Memory Service offering to help her if her mood was low: otherwise discharge from the Service would follow.  This does no make any sense whatsoever.  Sorry about all of that, you can see I feel strongly on these matters ….now back to Mel.

I remember little of what she said.  She just let me talk.  I wonder if Heather had told her that I liked the sound of my own voice so she just let me ramble on.  No wait a minute: it’s all coming back to me now there was something that she said about ‘picking your battles’.  Seems she weighed me up very quickly.  She sussed that I am often trying to change the world and has encouraged me to be more realistic.  Not directive in the least because the choice of battles is mine.

We spent about an hour or so chatting.  Rather me talking and Mel listening.   Next time we are together it will be a threesome, as we are sitting down with Sue our new social worker.  Mel is also keen to be in on my Blog circles to keep a wayward eye on what’s going on here.  She has also confirmed that Emails and phone calls  were still a good way to keep in touch.  The bonus here is I have already experienced the importance she places in responding to communication.  If you leave a message for Mel she gets back to you: just like her predecessor always did.

Pick your battles eh; that’s a good one.   Once you’ve met one Admiral Nurse you’ve met one Admiral Nurse.  However Heather and Mel have two important things in common; lots of empathy and compassion.  Oh I’ve forgotten another: they are not only prepared to sit and listen; they actually hear what you say because they understand dementia.

It’s early in the morning once again.  I have woken myself up this time, no-one else is to blame.  Maureen is sleeping peacefully, thank goodness, and my mind is active far too early in the morning.  With a meeting with my Admiral Nurse  this morning and my social worker tomorrow I am trying to clarify my thinking about my aspirations.  Put quite simply it is that I want to be more than a Care Partner.

There are some people who almost brag about their total devotion to their loved one.  Any perusal of Talking Point will reveal harrowing tales of endless struggle, and acceptance of an impossible burden.  Often the marriage contract is used to justify heroic struggle, even when the odds are stacked heavily against the Care Partner.  I do not believe Maureen would expect that of me or me of her.

There are lines in the sand in our relationship, and our love is not based on evidence of self scarifice.  In fact I have often heard Maureen hint, and even say: ‘if this is becoming too much for you, put me in a Care Home’.  That is a measure of Maureen’s love: she would endure facing her worste nightmare rather than feel she was spoiling my life.

I have already outlined my thinking on being more than a Care Partner in The Way Ahead.

Once I have crossed the bridge of a Carers’ Assessment I will be a better Care Partner for Maureen.  Quite simply, because I will become myself again.  It’s such a shame that this process has been postponed so many times.

I am not sure who the villains  in the exploitation of care workers.  It is possble that it isn’t the Agencies fault.  Recent media focus has been on a caring sector being squeezed to death by Local Authorities, who are themselves under pressure from austerity measures.  However, this ‘pass the parcel blame game’ doesn’t quite add up, when I look back at the behaviour of Charlotte, and her Agency.

On several occasions plans for a weekend break have been frustrated by our current Care Agency not having staff available.  Generally, they need a couple of weeks notice, and even then I have been let down on several occasions.  I will never know if their tales about late notice, from the social worker, have been significant.  Yet Charlotte’s Agency  offered to provide support  for the whole weekend at  short notice.  Unfortunately, my sinus infection meant that I couldn’t take advantage of their offer, and I didn’t get to see my mum yet again!

I think it is important to mention once again Charlotte in action: a master class in caring.  Her performance replicates the approach of her Agency to customer service: they have been a revalation to deal with.  In my limited contact with the company they have convinced me they are set up to respond to their client base: they exude empathy, compassion and professionalism.

It is possible I have received special  treatment as they try to gain a foothold what appears to be a lucrative market.  If that is their game; good luck to them as they are starting off on sound footing.  Any company that treats their customers with dignity, and respect, deserve to thrive.  How refreshing to receive prompt responses to E mails and enquiries.

The experience my brief contact with Charlottes Agency raises two important questions.  What detremines how Local Authority contracts are awarded?  If small Agencies can respond to communication promptly – why can’t staff who work in the Public Sector do the same?