I am up very early this morning for a number of reasons.  We have an exciting day ahead and I need to get things ship shape.  Lisa my eldest daughter and her family will be here by noon.  They offer the prospect of another lovely start to the weekend.  Once again we will have the patter of little feet in the house as Lisa and Tapan have two beautiful daughters; Mala and Amba.  As I have mentioned before we are somewhat isolated up here in Cleethorpes and always welcome family when they want to visit.

Both of our respective families are sensitive to Maureen’s condition.  Lisa and Tapan have both experienced dementia within their own immediate families, so are used to dealing with changes in presentation of the person concerned.  Although that is not the same as living with dementia 24/7, such an awareness generally leads to sensitive responses to our current plight.  We are both excited by the prospect of their visit after a lovely experience last weekend when my sister Barbara and her son came to visit.  Maureen has mentioned, many times, how much she enjoyed being with Tim: he’s a charmer that one with his ‘favourite ladies’.

My early start to the day gives me a chance to sort out the entertainment package for two lively young girls.  Mala has said she wants to go crabbing and the gear has been in storage since last summer.  Then there is bait to be acquired if the catch is to be good.  If luck is on my side and the wind is in the right direction I might even persuade them that kite flying is fun.

As the in house chef meal planning needs to come to fruition.  I have a menu in mind with the option to go to a local pub if the going is good.  It is one of those occasions where a ‘rain check’ is needed to see if it sensible to venture out:  busy pubs at the weekend are not the best places when dementia is on board.

So full steam ahead for a fun filled few hours.  I am confident that our visitors are well aware of fluctuating energy levels and will be sensitive to the needs of the ‘old couple’ .  If we get it right it will be another one of those positive occasions that Maureen will look back on fondly in the coming week.   How will she remember if she has dementia?  Quite simply because her emotional memory is still intact and she has very fond recollections of raising her own children.

What an irony  my earlier post sang the praises of Heather my Admiral Nurse – by lunch time I knew that I was about to be jilted.  During our chat this morning she mentioned that she is planning to emigrate.  Reading between the lines we will have one further date and then she will be off to warmer climes.  She will be a loss to this area, but one of the consequences of living in the sticks is that young able professional staff do not stay long.  One thing I have learned rapidly with dementia is that our environment is constantly changing.

Someone once suggested to me that fate had played a part in recent developments in my life.  Almost thirty years ago Coventry City Council were kind enough to second me to Warwick University to undertake a Masters Degree.  The nature of my studies could not have been more relevant to my current role: Continuing Education and the Management of Change.  On occasions I have considered continuing academic studies with a Doctorate and had preliminary discussions with Hull University a couple of years ago.  I eventually decided against furthering my academic development for a number of reasons.  However, i often think that with enlightened supervision I could write up my current experiences and gain further initials to my name.

Within the last couple of years I regained contact with Tom Schuller my supervisor in my year at Warwick.  As he said when I eventually tracked him down via the Net : ‘I remember you’.  Last year we met up again in London during a visit to see up  two of my daughters.  Tom was a great supervisor and is a lovely man: we still exchange by E Mail: often about the plight of our football teams.

During my year at Warwick I never thought that fate may have been playing a part in my life.  Continuing Education and the Management of Change; sums up my caring role in a nutshell.  Thank goodness for all the Tom’s in the world who continue to play their part in supporting us carers.   Tom just happened to mention, during our last exchange, he had been reading book called ‘Musicphillia’ by Oliver Sack that I might find helpful.  I had chatted to him previously about how music had become an important part of Maureen’s life since the onset of dementia   Some style about that man: still practicing sound adult education techniques, suggesting relevant reading material to his ex students, even after almost 30 years have passed.

I realise that we are very fortunate to have Admiral Nurses in this area.  I am meeting mine this morning and it will be an opportunity to chat things over with someone charged to support carers.  Heather is a refreshing change from the political correctness that pollutes the Public Sector.  What I like about her in the words of my dear old dad is that she: ‘calls a spade a spade.’   A breath of fresh air from : ‘I know where you are coming from merchants’ that spend their days ticking boxes and handing out their own hard luck stories.

After the normal pleasantries, just before lunch time this morning, I can predict Heather’s first question will be: ‘What can I do to help?’   It is so reassuring to be able to meet someone to discuss how I am coping with my caring role.  The added bonus is her experience, and expertise, in supporting those caring for a loved one with dementia.

My initial focus will be on attempting to grasp an understanding of the progression of Maureen’s dementia.  My day to day observations of her presentation need to be put into context.  Heather will help me to see where the condition is going and whether my responses are well informed.  One of her coaching strategies has helped me to see the importance of the environment on Maureen’s presentation.  I am sure she will give me useful feedback on recent changes I have made on the home front.

This morning will also give me an opportunity to discuss the issue of ‘me time’; to ensure that I am ‘a man rather than  martyr’.  I now need to have the courage to assert my right to being more than a primary care giver.  In doing so both of our lives can only be enriched.

As I said at the start of this post we are so fortunate to have Admiral Nurses in this area.  Heather is particularly Admirable in the way she goes about her work.  I know she will cringe if she reads this Blog.  Unfortunately, for her,  one of my New Year’s Resolutions was to give credit where it’s due.

Sorry Heather if you have to reach for the sick bag!

It seems there are choices to be made when you are the Primary Caregiver. Put simply it is a choice of being either man or martyr.  I hope you will all forgive me for this polemic but that is my style.  It would be difficult for me to change habits of a lifetime: my predisposition for being an activist is not going to change and that is the point of this blog.

For most of my adult life I have been involved in activism of some kind.  My activism was born on the shop floor of the car industry where I soon learned you had to look after yourself.  The only way to do this was through the trade union movement, where collective action mitigated against the harsh realities of the piecework system.  The reality being the last man on the line got the hardest  task in trying to earn a decent wage.  No one stuck around very long on an operation that had a bad piecework price.  So if you were that poor guy who didn’t know how to bargain for a fair piecework price  you would have less bread on the table.

Once involved in the trade union movement you were encourage to get involved in the Labour Party.  With ‘Clause Four’ on the back of your Union Membership Card, the path to graduation seemed obvious.  My involvement in activism has accompanied me throughout my transition from a ‘grease monkey’ to the heady heights of working for a Local Authority. Following spells at various Universities to secure my tickets to professional work.

I suppose it is quite difficult to move away from your roots; particularly if you have any concept of class.  Equally, if you have had a professional career in developing activists you are not likely to be able to ‘sit back and listen to the music’: as helpful as YouTube is at this moment in time.  Therefore, being a Primary Caregiver will never be enough for your truly and the solution is quite simple.

There are two causes that immediately spring to mind where I can don the cloth cap of activism.  Firstly, looking after myself: I need to create ‘me time’ where I can fulfill my needs as a person.  Secondly, as many have pointed out, the approach to dementia leaves a lot to be desired and there is campaigning to be done in that arena.  Striking the balance is not easy but hiding under a bush being a martyr, caring for Maureen, will not help either of us.

I am optimistic that we have a reasonable holding position at the home base.  We have our ‘adopted daughter’ providing a carer sit on Monday and Friday mornings.  The jury is still out on what we are going to do about the Wednesday sit: we have cancelled for the last couple of weeks.  So we know our house will feel more like a home a couple of morning a week with ‘family’ popping in to provide much needed company.

On occasions we feel stuck in the sticks and quite lonely here in Cleethorpes.  Immediate family are all a couple of hours drive away and members of extended family are getting thinner on the ground.  I am sure all of this adds to the ‘wanting to go home syndrome’.  Living at the coast we tend to get more visitors in the summer from our land locked  relatives. This weekend will be another one of those happy occasions as my eldest daughter and her family will be along for crabbing on the beach.

With the nights drawing in we need to plan ahead; to help us cope as visitors become less frequent and strolling along the Prom becomes less attractive.  Seeking Winter Sun used to be one of our pleasures in life.  We have often spent the period around Christmas in Portugal.  Those who have divorced will understand the need to ‘run away’ for the Festive Season to avoid complications.

If we are to seek Blue Sky in the winter we need to build up to such an adventure.  Since Maureen’s stroke she has remained at home: we haven’t even managed more than a 50 mile circular car journey around Lincolnshire.  So there is a fair bit of confidence building to take place if my aspirations are to be realised.   We have to start somewhere and an opportunity to start the ball rolling is on the horizon.

It is Maureen’s brothers birthday at the end of the month and she would love to pop across to Nottingham in to see him.   I am optimistic that such a journey is not beyond us and may just start the things moving on the travel front.  I intend to deal with any reluctance on Maureen’s behalf to travel or support my needs, and aspirations, in a later post. This will follow on from ‘What About the Primary Carer?’ posted yesterday

One other point on the Sky is Blue thinking: I just have to mention that my footie team are top of Division One at the moment.   Coventry City (the Sky Blues) are unbeaten after the first three games of the season.  Lets hope we will be in Portugal some time in the winter celebrating that the sky is blue and the Sky Blues are on the way up to the Championship.

Kate Swaffer has suggests that those diagnosed with dementia need to Reinvest in Life.  Her article in the Australian Journal of Dementia Care, at the start of the year, points out that ‘Prescribed Disengagement’ is the approach that generally accompanies diagnosis.  It’s emphasis on accepting limitations, and witnessing decline, turns those diagnosed into victims and their carers into martyrs. Kate puts it this way:  ‘This Prescribed Disengagement™ sets up a chain reaction of hopelessness and terror which negatively impacts a person’s ability to be positive, resilient and proactive, ultimately affecting their well-being and quality of life’.

One of the missing focuses from my Blog so far could have been entitled: What About Me?  There are lots of micro and macro issues concerned with trying to develop a life with dementia:  but there are two people involved in this marriage.  If the D word is not to take over lives then there needs to be a focus on the Primary Care:  yes me Paul Collins.

I have had some challenges in my life but this takes the biscuit.  As an active trade unionist, representing employees in various settings, I would have called time on this deal long ago.  In many ways this is plain exploitation under the Marriage Licence with an Endless Hours Contract   There is lots of literature on how caring shortens and destroys lives: it like a vampire sucking blood out of its victims.

An article in Alz Live today sums up the struggles associated with being a Primary Carer.  Now I have made progress on shoring up the home base, I need to focus my own needs.  I have to find time in my life to be a: father, son,  brother and friend, alongside my caring role..