In my plight to find a title for Wednesday I have decided on ‘Work Out Wednesday’.    Firstly, after the events of yesterday it’s going to be a day to review the week and plan ahead.  Secondly, it’s going to be a day for ‘working out’ in all sorts of ways.

Today I have to take it easy and take a low key approach to things here.  It’s time to let the dust settle and see what happens as a result of the social worker’s visit yesterday.  I have flagged up a couple of ideas to Maureen for activities today.  Her  response has been luke warm.  With luck we might make it to see her Aunty Ethel and Uncle Dennis.

The other aspect of ‘work out’ is on the mind and body.  Time to return to a bit of meditation and tai chi.  I think it is sensible to be home based today – using the resources we have here.  I may well put the DVD and the CD on in front of  Maureen to see if she will join in.  If she takes the bait it may be possible to cajole her to join in with others at some later date.  It’s a bit like fishing being a Care Partner.  You throw out the ground bait to see if you can get the fish into the swim.   Once there is interest cast out your line and try to reel them in.  The real struggle is getting your catch to stay in the keep net.

By the way I found the missing premium bond prize yesterday.  I’m still trying to find those spectacles!

Yesterday I posted that I would try to create more routine into our lives.  To carry on with that theme: today is ‘soup day’ to fit in with the Scaffold’s song.  There is one other thing I am going to introduce that is to have one particular activity to get up for in the morning.

I recall during periods of depression being haunted with not knowing how to fill my day.  It’s quite frightening when you don’t know how to fill your time and the whole day is before you.  As Maureen’s dementia progesses she has lost track of how to fill time, because she has forgotten her daily routines.  I made a start on this yesterday  and Maureen seemed pleased that we would try to visit her Aunty Ethel.  Unfortunately it didn’t happen and by the afternoon Maureen had no recollection of our plans.  We will visit Ethel some other time and she will regale us with all sorts of stories about Maureen’s childhood.

Today we are hoping to make a trip to Grimsby.  That will give us an opportunity to get one or two things that we need.  I am hoping that we will be successful in making more progress on the underwear front.  Maureen is getting really distressed yet again that most of her underwear is uncomfortable.  It will also give us a chance to move on an early morning exchange

As we were chatting in bed  this morning, Maureen mentioned that we had not found a radiogram.  I will need to look back but I think it is a couple of weeks ago that we were talking about possibly buying a radiogram.  In the time that has passed since the idea first surfaced I don’t think it has come up again.  So all this ,as are other aspects of Maureen’s presentation, is fascinating to me.  I try to be optimisic about the potential for Maureen to improve her short-term memory, and I find this morning’s conversation confirmation that we may be on a helpful route on our journey with dementia.

There is no doubt that stroke has had a massive impact on Maureen’s cognitive, and functional capacity.  When she is good she is very, very, good but when she is bad she is awful.  Her energy levels are clearly a significant factor as it takes so much more out of her to process, and tiredness soon sets in.  When we overdo it she can sleep for England, and often her greatest confusion surfaces shortly after waking.

I often don’t know how to play the ‘dementia game’.  From what I can see there are no rules, only guidelines to help you get by.  My instinct suggests if I don’t nudge towards exploring the radiogram it will be forgotten; buried in the routine of the day.  I don’t think I can risk that happening as the potential for cognitive stimulation in searching for a radiogram is significant.

The general advice for the brain is: ‘use it or lose it’ and searching for a radiogram takes us along that path.

I think the time has arrived to have a fairly fixed weekly routine.  Carers are now needed on most days to help me to keep Maureen stimulated and safe.  I also need to build in regular activities that I go to when carers are here.  In addition Maureen and I need to have a couple of fixed feasts in the week.  I am hoping that regular routines will be of mutual benefit.  Which day of the week it is won’t matter it will all come down to whether it is: ‘Wash Day Monday’ or ‘Fish and Chips Friday’.

I’m hoping it won’t take long to have a name for each day.  Then I can put up all sorts of clues to remind Maureen which day it is.  We want to avoid haddock in the washing machine on Monday’s at all costs.  As the song says:  ‘2 day’s Monday’ and the first lot of the day is about to spin.

Decadence seems to have set in on these cool Autumn mornings as we have taken to listening to YouTube in Bed.  I don’t know what Oliver Sacks would have said about that!

When I popped in to see Yvonna yesterday she told me that she was busy and stayed behind the counter.  I edged her into the consulting room with: ‘I could just do with a couple of minutes on neuroplasticity’.  Yvonna is always generous with her support to me, as I seek mentoring on my approach to being a Care Partner.

Yvonna has a very holistic approach to well-being; she is well read and has a sharp mind.  The Branch of Lloyds where she is the Pharmacist is within walking distance of  our home. Walk-in expertise on the doorstep: what more can you ask for when you are trying to find your way with dementia?

I wanted to run by Yvonna how music is making such a difference to our lives.   When we have chatted about this before she commented: ‘you have found your way’.  What I wanted to share with Yvonna was that Maureen was learning to  sing along to new songs.  Yvonna is a great one for bringing you down to earth:  with a smile on her face  she suggested that ‘I would need to be working with a group of 50 people for 5 years before there was real evidence that my theory had substance’.

I squeezed more than two minutes with Yvonna and left with further cause for thought.  Music has allowed us to find our way: we sing, dance and have fun with YouTube several times in the day.  What I wonder is if I put Barney on again whether Maureen can learn, and retain, far more than the chorus?  What I do know is how sorry she feels for the lad singing:  ‘I wish I had someone to love me’

I don’t think it will be long before I am back, for another ‘two minutes’ ,to let Yvonna know how things are going.  It is such a bonus to have such expertise, and radical thinking, on the door-step.

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?

This afternoon Maureen and I bumped into a woman who used to be one of the carers from the Agency.  We hadn’t seen her for a while and she said: ‘you won’t be seeing me again, as I have just handed my notice in’.  Sue was one of the better carers, and we would happily have had her as one of our regulars, but that never happened.  Until I became very firm with the Agency a couple of weeks ago, they sent a succession of carers on Wednesday’s: almost a fresh face every week.

Sue told us the reasons for her resignation were not: the poor hourly rate; the lack of travelling expenses; or the fact that she was on a zero hour contract.  Her reason for giving in her notice was that she was often asked to work for a couple of hours in the morning and go home before resuming her work a few hours later.  She was also fed up with continually being phoned up and offered a £10 bonus to work a few hours on her day off.  She was even told if she didn’t  bail them out there was a danger the Agency would be placed in ‘Special Measures’.

Yesterday I happened to be down by the headquarters of our Agency.  Large banners were outside their offices trying to recruit new staff.  The terms and conditons on offer included: regular contracts, training, and travelling expenses.  I just wonder how on earth any organisation can get away with such misrepresentation?  I also wonder how Local Authorities are able to place lucrative contracts with such dubious organisations?  I think the only solution is to take such vital services back into the Public Sector.  Care in the community is fine but it should be under the auspices of Local Authorities.