The last two days have convinced me that it has been worth standing my ground and perhaps ruffling a few feathers.  Just to give an impression of how I continue to deal with my tendency to ‘take them on’; my focus in 2015 has been to praise when I receive good service.  I have had an amazing responses to thanking individuals and organisations, when I have kept my word.  So I have learned  it’s good to praise as well as suggest improvements, when things don’t go well.  That has been my approach in attempting to resolve the support we need on our journey with dementia.  What I have been trying to achieve is to get the same quality of service we have received from Clee Medical Centre, since Maureen’s diagnosis, replicated across the board.  After a period of struggle I now think we are on the way.

It’s important to point out that any time I have asked questions, or raised concerns, there has always been a willingness to listen.  At a time when austerity measures are taking a significant toll on services the door is still open for a rethink: to take in comments.  I think it is commendable that North East Lincs are prepared to listen.  At no time as I have pressed a hard, and sometimes presented an unpalatable line to the authorities, has anyone ever shut the door on me and hidden behind lack of resources.  When you are trying to improve Public Services  you can’t ask for anything more than that.

I am confident that a suggestion I have about how Sue our new social worker will get to know us will get favourable consideration.  I am nervous that the My Life  approach might be doomed as soon as the folder comes out of Sue’s bag.  So I have a  ‘cunning plan’.

I think it is possible to use planning for my 70th as a way of getting to know us.  It is something we have already skirted around, and the folder is on the table: so to speak.  I am pretty confident Sue and I will be able work intuitively;  using holidays as a way of getting to know us.  We already have lots of resources at hand: mountains of photographs.  We also have a DVD of the Baltic Cruise that we went on for Maureen’s 70th.  So lots to go on as a vehicle for introductions and sorting out tactics for the future.

I hope I am not being selfish here.  Be interesting to see how much leniency I will get at my tender age. After all: ‘It’s my party and I’ll cry if I want to’.  I wonder what Lesley Gore is doing these days?

Within minutes, this morning, I came to the conclusion that our new social worker was the business.  One of my shortcomings is I make my mind up about people within the first few minutes of meeting them.  Sometimes, I get it wrong but I would put my money on Sue being just what we need.

I wouldn’t claim that I have a formula for sorting the wheat out from the chaff; it’s more of a gut feeling. Throughout the hour or so that we spent together Sue exuded, professionalism, empathy and compassion.  Perhaps what sealed it was when she said: ‘You are the expert here: you are on duty 24/7’.

I know I have a reputation for fighting my corner and often polarising things.  It’s my dad’s fault you see as I outlined in an earlier post – he taught us not to be pushed around.   However I know he loved both my mum and Maureen and would have said: ‘the ends justify the means’.

There is no way the sins of Sue’s sisters were going to be sorted out this morning.  That will be done in another place.  What I am pretty sure of is: this straight talking woman will deliver, and we will now get the support  we need.  I have no doubt whatsoever that I will now be able to be a person in my own right, as well as a Care Partner for Maureen.  It won’t be long dad before I am able to keep my promise that I made to you about mum.  You will also be pleased to know that I can become the ‘Old Man’ again to my own children.

Oops I nearly forgot Sue is going to complete a ‘My Life‘ profile with Maureen.  That sealed it for me.  She is going to give Maureen the chance to tell her story.  S he wants to hear it ‘from the horses mouth’ not an edited version from a third-party.  I knew that all this DIY  is not needed.  Some social workers understand their role and the pressure Care Partners are under.  They don’t expect the likes of me to do their job for them!

I still haven’t read Oliver Sacks book on the benefits of music for the brain.  My excuse Professor Schuller is  that I often feel too tired to read, so I took it back to the library hardly opened.  However Tom, my good friend, I think I have empirical evidence that it works.  You always encouraged me, in my year at Warwick, to conduct my own research; well I have and as anecdotal as my evidence is I think you would allow me academic licence – yet again.

When Maureen came down yesterday morning I placed her in front of the T V.  She simply had to face the screen if she wanted the further cup of tea that she had requested.  I had deliberately left YouTube on with Christie Hennessy singing one of her favourites.  As I acted as D J we moved on to The Dublinners.  When I heard her singing along with Barney to: I Wish I Had Someone To Love Me  tears came into my eyes.

This morning Barney is on again, and my Songbird is in good voice.  She said she heard the song for the first time yesterday, and is joining in again.  I think Dr Sacs has opened a new road on our journey.  I simply must catch up with what he has to say about music and short term memory.  In the mean time let the music play: it’s impact on mood is almost immediate.  Providing you play the right songs.

This post was written yesterday before this morning’s stark reminder  of Maureen’s vulnerability.  She is fast asleep again now, and didn’t mention the incident when she was awake earlier.

Maureen has shown some really positive signs in the last few days.  I am not wanting to get too carried away but on several occasions she has shown remarkable insight into situations.  The other aspect of her behaviour that is worth commenting on, is the confidence she now has about talking about her condition. I think this is evidence that the diet that the Head Chef is providing is really helping: so androgogy will remain on the menu.

Yesterday morning convinced me that as Head Chef there is no need to change the menu and we are ‘cooking on gas’.  We went for an early morning walk and bumped into a friend along the way.  As we stood chatting, Maureen joined in the conversation with some gusto.  She said all the right things and joined in with the jocular nature of the exchange.  At one stage Ron said to Maureen: ‘you are so much better than the last time we saw you’.  Any observer of Maureen would not have believed that she had suffered stroke, and been diagnosed with dementia.  But it gets better than that.

As walked on from Ron Maureen gave a fascinating insight into her condition.  She said she would not have known Ron if he had been on the other side of the street.  The trigger for her memory came when he spoke and she recognised his voice.  I took my cue from this to confirm how we use all sorts of tools to remember things.  

Maureen found this analysis very reassuring, and we walked on chatting away.  When we returned home things got even better.  We separated for a while on returning home; busying ourselves with our own pursuits.  When I caught up with Maureen a short while later she was bursting to give me more good news.  She had been in the dining room looking through the book shelves, and found ‘her books’.  That had led her to realise how they had got here, and that this was where she lived.  Once again, like a couple of days before, laughter took over when she revealed that she thought someone had stolen them.  Then I thought ‘in for a penny in for a pound’ and recounted her thoughts in Nottingham about the gay man who has sorted out the underwear crisis: that did it.   Maureen roared with laughter for quite some time – rolling about on the sofa.

I reassured her that it didn’t really matter if she was sometimes unsure who I was:  the most important thing was to know I would always be here for her.

Footnote: I have deliberately substituted ‘is’ for ‘was’ in the  title of this post because I have no idea how Maureen will be today.  She seems exceptionally quiet and pensive.  I hope that  sleep will have a healing impact on any troubling thoughts that are rumbling around her head.

Today is the start of an important week in my role as Care Partner to Maureen.  On Saturday I aim to be on my way to see family.  I am hoping that arrangements are in hand for Maureen to be well cared for while I get to  see my folks, and have much needed break.

It has not been easy to secure respite in the past.  So I thought it a good time to reflect on the sentiments of  the Caregiver’s Prayer, that follows.  I just hope, and pray, that this time my plans are not frustrated by the inability of others to make the necessary arrangements.  I think that three weeks is a reasonable amount of notice, for our social worker, to arrange around the clock care for Maureen.

The following passages are reproduced from the Alz Live Newsletter.: 

‘There’s a neat little 12-step “prayer,” that is the Mother’s Little Helper of caregiving.

It is time for us all to change the way we interact with Maureen. We need to become listeners, rather than talkers, so the we can begin to understand her reality, and provide appropriate responses to her needs. This is going to present a significant challenge to yours truly.   Having found a listener I now need to  become one myself: no simple task for someone who is often seeking an audience for his take on life.

Maureen has been in bed for over 12 hours now: totally wiped out by the last couple of days.  I would anitcipate she is likely to be asleep for a while longer yet.  I am hoping that we will be able to limp back to Cleethorpes this afternoon. The trip to Nottingham has been a revelation. It has helped me to increase my understanding of Maureen’s reality and capacity.  I could write volumes on what I have heard, and seen, but I am opting to summarise with bullet points:

• Maureen has struggled to find her way around a small bungalow.

• She is anxious about saying or doing the wrong thing.

• Nottingham brings back many painful memories.

• Her nurturing nature remains intact: she would like to help her sister.

• She prefers Cleethorpes to Nottingham.

• It would be unkind, and unfair, to try to travel further south.

• Maureen’s confusion about: time, person and place is becoming greater.

• Staying in other people’s homes is no longer a sensible option: it is too disruptive on their routines.

Several people have helped to cajole Maureen to venture beyond Cleethorpes. I am unclear in whose interest our efforts have really been. It is no longer my opinion that encouraging Maureen outside her comfort zone is the way forward. I have no idea what it is like to have dementia or live with dementia. My perspective is only gained from living with someone who has dementia.

I am absolutely certain that the most appropriate response to Maureen’s presentation, at this moment in time, is to continue to seek to minimise distress. This will not be a simple task; as it has to involve attempting to inform others of what might be needed at any moment in time. Such efforts may not increase my standing in the popularity stakes.  I hope others will accept that being with Maureen 24/7 and listening to her, as dementia marches relentlessly on, gives me a perspective that is worth considering.

In the early days of blogging I mentioned the reluctance of our Memory Service to use the term dementia.  It appears that their preference of Memory Issues is more than political correctness.  They would argue that ‘dementia’ strikes fear into people; once they are given the diagnosis in such stark terms.

Maureen has had added complications in her diagnoses.  She came away from the Memory Clinic with an initial diagnosis of Mild Cognitive Impairment, with Vascular Changes.  Neither of us had heard of MCI before and were relieved when Care Co-ordinators from the memory service informed us that the likelihood of dementia occurring was unlikely.  From my reading their explanation of the statistics is completely innacurate.  This matters little now as one of their colleagues, who conducted further testing, diagnosed vascular dementia.  Again this is at odds with the Psychologist from the Stroke Team, who, had previously taken me to one side and explained that Maureen had mixed dementia.

There is no doubt that there is consensus on Maureen having dementia.  The type is academic, and matters little. Fortunately, Evonna, our local chemist suggested a way forward on this matter.  She suggested a positive way forward with a mantra of: ‘Maureen is not ill she is recovering from stroke’.

Evonna, and her staff, at our local Branch of Lloyds have provided excellent support to us over the years.  Since Maureen’s stroke, their contribution has been significant at a number of levels.  However, I have to single out Evonna for her knowledge of dementia and her words of wisdom: ‘You are not ill you are revcovering from stroke’ is a positive platform for Maureen on her journey with dementia.  It is honest, and completely free of political correctness.

NB:  A further Post will follow later this morning.  After yesterday’s, very supportive, visit from our social worker  I have to work out if I am the one who is now Pussy-Footing around!  More later……….

Last night I did something that I have been thinking about for some time: took out our record player and put on some vinyl.  The response was remarkable in all sorts of ways.  I opened up with a Shirley Bassey L P and Maureen became our in house ‘Songbird’.  A title we have bestowed on Maeve, one of our grandchildren, for her efforts on YouTube.

Our dining room became a music studio for an hour or so, and opened up so many new paths on this journey.  We had such a lovely time last night, and yes we sneaked in a dance or two, that it’s going to be a fixed feast for a while.  So first of all playing records will be a pleasant time filler as the nights draw in.  Then there are so many things we can build in around our music sessions.  With the right music the scene is set to move on the rumba  front: strictly in time to the right music.  Yet there is far more to come than dancing, following our chat early this morning.

Maureen decided that she needed a cuppa at 2,30 this morning.  She popped downstairs and returned shortly afterwards upset that no-one else was around.  Just to repay her kindness in waking me up; an hour later I opened the debate on the way forward with vinyl.

We have come up with lots of things we can do in the evening with background music on.  First of all we need to sort out our record collection, to remind ouselves of the depth of music on hand.  Several wild ideas are on the cards including seeking an old fashioned radiogram, to remind Maureen of her ‘mispent youth’.  So it’s going to be ‘Music While You Work’ once gain for Maureen –  our in house version of: ‘Reminiscing Therapy’ or ‘Singing For The Brain’.  It’s DIY once again for us, as Maureen simply does not want to go along to activities sponsored by the local Memory Service.

Continuing with my musical theme today I’ve just remembered going to see Pato Banton with Maureen. We went because rumour had it that members of UB40 would join him on stage.  They didn’t but when I think of one of his hits, well you couldn’t make it up: Baby Come Back.  As I have mentioned before one of the wonders of YouTube is you can always catch up on shows you didn’t make, as I have done with the picture below  This time Pato is together with Ali Campbell the real voice of UB 40:

If only it were so simple to do something about dementia.