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..

I am always impressed by the level of support offered in this town when you mention the word dementia.  This morning has been another example of dementia friendly staff in a local Superstore.  Once I mentioned my dilemma and produced a sample of what was needed, help soon arrived.  A lovely woman guided me around areas of the shop that are not familiar to men and assisted me to make suitable purchases. I am optimistic that there will be positive results from this morning’s mission.

I have returned from Grimsby with several purchases and need to manage the Fashion Show that is pending.  My approach will be to encourage Maureen to try on one pair of joggers today.  This will mean minimum disruption from her current pursuits and will not involve the removal of clothing that is already in place.  It is easy to forget my mantra of KISSS  is vital with clothing. Keeping it Simple Stupid and Short raises the prospects of  one of the options being deemed suitable. If I go for a Fashion Show, all the new gear faces being ditched in one fell swoop.

The real bonus from today’s mission is the positive atmosphere it has generated in the house.  Maureen feels good that i am trying to help.  I fell better that I have tried to do something positive to sole the clothing crisis.  As I have said before sitting around witnessing decline is not our approach to living with dementia.

Yesterday I posted about my plans to embark on a period of Tough Love rather than continuing an indulgent approach to Maureen’s dementia.  You will note from revisions to my About page that I see little point in avoiding using our names from now on.  So it’s Paul here – attempting to find  the most the most appropriate focus for the next few days.

It seems to me that sorting out the clothes issue is a useful starting point.  It takes Maureen so long to get dressed each morning.  The whole searching exercise is often so exhausting that she often goes to bed before the day has started.  This will not be a simple matter as many, including myself, have tried and failed on this front.

Just to get us off on positive footing this morning I have washed her favourite pair of joggers.  She lives in her ‘Blueis’, as we call them, and they will be needed as it is cool this morning.  I am fairly confident that I will be able to find a t shirt and jumper to complete her outfit for today.  None of this is easy as: ‘nothing fits, belongs to her or it smells of perfume’.

If things go well this morning we will search the stores in Grimsby for a few more additions to her extensive wardrobe.     With luck several garments, deemed unsuitable, that have never been worn and still have labels attached will be returned. Finding suitable underwear is a real priority: Maureen is really low on on things that fit and provide support.  It will be a real bonus if we are successful in that area.

There is no doubt that we cannot carry on like this.  So much time is being wasted in the daily search for suitable clothing to wear.  I will just have to tough it out and confront Maureen with her dilemma of either putting up with what she has or looking for something that is better.  The endless rigmarole that takes place every morning has to end.

I think I need to engage in a bit of tough love.  Indulgence is not helping and we are wasting lost of time as dementia is progressing.  It is time to dig in a little and take any hostility that comes my way.

Clothes are a real issue for my wife: nothing fits or feels comfortable.  Lots of the clothes in her wardrobe ‘belong to to other people or they smell of perfume’. This state of mind has continued since stroke and shows no sign of abating.  I simply have to bite the bullet or this scenario will continue.

Tomorrow I plan to take action and steel myself for a possible hostile reaction.  I will put out new clothing that has the potential to fit.  I will hide, even throw away, the old scruffy gear that  would not be accepted by a second hand shop.

I have no idea whether this will work.  However, seeing my wife trawl through clothing every day and getting so upset has to come to an end.  She often gets so worn out by her routines that she goes back to bed totally exhausted.  This reduces the time for activity that could help reduce the impact of her dementia,  She is currently in tears with her frustration following today’s ongoing search for any clothing that is comfortable or suitable to wear.

Watch this space: interesting times are ahead.

I am pretty tired at the moment and early morning wakening is once again a feature of my life.  It is difficult to switch off when I wake early in the morning and if I mange to stay in bed then I am generally thinking.  My thoughts stray to what can be done to improve our lives.  Yes  I know staying in bed and sleeping longer would be a help.

We have moved on from a difficult phase over the last few weeks.  It appears we now have some continuity of care with our ‘adopted daughter’ on duty two mornings a week.  Strange faces waking you up in the morning are not a good start to anyone’s day; particularly when you have dementia. I am hoping that continuity will give us a helpful pattern to our lives in the coming weeks.  One issue that continues to nag away at me is the whole business of denial.  My wife would at best admit that she has some problems with her memory she does not appear to accept she has dementia.  Despite the loss of 50% of peripheral vision she often talks about getting her licence back.

In previous posts I have already alluded to reluctance of the Memory Service to use the word DEMENTIA.  They have not done us any favours in their misguided approach to M’s condition and I have outlined their shortcomings in a previous post..  It would be far more sensible for dementia to be treated as brain injury.   Kate Swaffer makes this point in her Blog today:

‘If I had been referred to the brain injury unit (in the early stages, dementia is not that different), I would have been proactively treated to live the very best life possible with the injury I have. Suggesting I disengage from my meaningful life, and take up activities other people thought might sustain my soul, was not only illogical, it was insulting. Initially it seemed I should join in, I should be grateful for the services people are trying so hard to provide, often with limited funding and resources. But I have found mostly I get no enjoyment from engaging in things that I was not interested in before (doh!!).’

I have to admit I am unsure how to deal with denial.  When M talks of getting her driving licence back it is easy to listen to her plans and eventually change the subject.  I fully understand, like my fellow Blogger, her reluctance to attend  activities put on for people with dementia.

What I need to consider is how to sustain my efforts to encourage her to take up those things that might just make a difference.  There may be no need to spell out the likely prospects for her condition.  However, it would be sensible to try to find a few more ways to ease her out of her comfort zone:  procrastination is particularly the thief of time where dementia is concerned.  Cunning plans are pending and I make no secret of the fact that I will be following Kate’s path even though it is based on the ‘anecdotal evidence’ of one.