This very short piece is not meant to offend anyone or criticise any spiritual approach to life.  It is an exploration and something of an explanation of my take on the question of: Where is God in all of this?

I recall an appointment with a G  P a couple of years ago when she posed an interesting question.  I am unable to quote her verbatim but she wondered why was God allowing all these bad things to happen in the world?  I am not sure if my reply took her by surprise when I told her that I had some sympathy with the Buddhist approach to life.

It is not my intention to compare Buddhism with other approaches to life: merely to outline how it has helped me deal with dementia.  I could go into detail but E a friend of mine and one of Buddha’s followers put it in a nutshell: ‘now you have a great opportunity to practice patience and give unconditional love’.  So on this wet Sunday morning I won’t be going off to a church service, I have sat quietly for a while meditating.  At any time of the day I can listen to a C D, read one of my many Buddhist books that will  help me try to:  minimise distress; practice patience; and give unconditional love.  What more could I possibly I need?

I now regret not taking up the suggestion of my therapist to take up blogging when he pointed me in this direction some time ago.  Therapist I hear some say: ‘What’s up with this guy now?’. Well I’ll tell you: I’ve had several periods of depression in my life and our Medical Centre believes in ‘talking therapy’.  I will be eternally grateful to P as he helped me to think my way out of my depressive episodes.  His skilled therapy has enabled me to realise I didn’t need a lifetime on antidepressants.  I needed to change the way I looked at life.  This required me to accept that mild to moderate depression was not a chemical imbalance it was a condition: a reaction to your environment.

P’s skilled therapy came at the same time as I came across the work of Irving Kirsch.  He has proved beyond doubt that antidepressants main impact is as a placebo.  In short, they work because a medic suggests to the patient there is a tablet solution to the problem.  Changes take place and the patient believes that the magic tablet has done the job.  In my view this is dangerous ‘mumbo jumbo’.  Not only is it untrue it puts the responsibility on the medic rather than the patient.  Bad things will happen in all our lives we have to learn to deal with them: not rely on others.

There are those who are perhaps struggling with my blogging.  They may see my musings as too open: that is not my intention.  Blogging is one of my ways of trying to cope with the greatest challenge in my life: to see a woman I love disappear before my eyes.  I hope I am better equipped to deal with it than I was at 29 when my first wife passed after a brave fight against cancer.

My musings are not an affront to M’s dignity they are an attempt to put things into perspective, so that when she wakes up in the next few hours my reactions will be well conceived.  I apologise if my musings are sometimes close to the bone but would ask others to consider this simple fact.  Dementia makes no apologies it simply marches on: robbing the victim of their dignity in the process.   Leaving those who are close by feeling impotent because they are helpless to intervene.

The patients at our Medical Centre are fortunate that there is a belief in talking therapy: P’s appointment diary is always full but it is worth the wait to see him. .  Irving Kirch is now a little further away at Harvard, illness prevented us meeting last year.  There is little point explaining to  M how both of these people continue to help me, along with lots of others, try to give her the support she deserves and needs during her brave response to this dreadful condition.  My focus remains on trying everything I know to minimise her distress as this nightmare continues.

Breakfast was a little later that usual this morning: shortly after noon.  I had been playing Elvis’s Greatest Hits while  M stayed upstairs in bed and it created an upbeat atmosphere as M tapped her feet while eating her porridge.  She sang along to several numbers,  she took her medication at the end of meal and got up from the table.   As she stood up she looked at me inquisitively and said: ‘is he still making records?’

A little later as the King sang on she said: ‘of course he’s mot making records; he’s dead isn’t he?  I’d forgotten’.  Stumped for words for a moment I eventually mumbled something like: ‘I’d forgotten we’d got this C D – we must play it more often’. I think it may have been one of those occasions when I may have helped M to see that sometimes things just don’t come to mind.

When M came out of hospital following stroke we had a generous Care Package with lots of respite (me time) for your truly.  These carer ‘sits’ were ostensibly to give me a break from caring, so that I could follow my own interest.  In the early months I  took ever opportunity to escape from my Endless Hours Contract.  Now I am beginning to develop a different take on things.

M remains an intelligent articulate woman.  Unfortunately, her recovery from stroke has coincided with progression of dementia.  However, she can still be a sharp as a tack during periods of lucidity.  She continues to raise an interesting question: ‘why are you leaving me with people I have nothing in common with and going out on your own?’

Several months down the line I have accepted that she makes a valid point.  In short, we didn’t get married to lead separate lives: we have always been very close and have never really needed the company of others.  So I clearly need to get my act together and change how I see respite.  Certainly my battle to get a night away now seems ill conceived.

Just the same as any job a carer is entitled to breaks and holidays.  There is a break coming up for me now, as M who has just had a late breakfast, is going to lie down again.  So although I can never afford to take my eye off the ball, sometimes it will go into touch for a significant period of time.  It is up to me to decide what to do when the ball is out of play: I am spoiled for choice.

When C return from honey moon the coast will be clear to run off for a couple of hours.  I know M will be in safe hands and I can go out and do whatever I like.  But what does running off whenever I get the chance say to M about her and our marriage?  It’s akin to going down the pub and leaving the little woman to look after the kids.  It has taken me a long time to sort this one out, and I am beginning to choose when to go on a shopping mission or send the carer instead.

I have taken off my cloth cap and stopped trying to negotiate a better deal from Social Services.  What is the point of bringing outsiders in a household where we prefer our own company?  If a holiday would help then we will take one together and I have seen with my own eyes the possibilities on that front.

Some years ago we were on holiday in Croatia.  We struck up an acquaintance with a vivacious woman and her rather quiet husband.  As we got to know a little more things became clear.  The rather quiet gentleman was Scargill’s right hand man Peter Heathfield the ex General Secretary of the NUM.  What a shame Alzheimer’s has robbed him of the ability to share his experiences of those halcyon days.  I had shaken Arthur’s hand a few years previously and now we had met the other member of that dynamic duo.  We spent a while in their company and his wife shared fascinating stories of their antics battling the ‘Good Lady’.   The motto from all this is collective action is the way forward here: we are a couple and respite can be integrated into our daily lives together.  I’ve never been one of those: ‘off down the pub merchants’ and I am certainly not going to start now.

I was tempted to call this piece PIST again but you never know who is reading your Blog.  No this is a serious post about moving M from the duvet to the Dublinners with positive side effects.

Have to break now to provide support in the next room:

Foot and leg massage completed and I am on the keyboard again.  I must look into this problem some friends on Talking Point have shared interesting thoughts on ways forward.

So what on earth is he on about now you might ask?  Let me explain ….

The wonders of YouTube came to our rescue last night to give us a lovely end to the day.  For over an hour M and I sang along with the Dublinners at a concert, and the lads were in  great form.  I don’t know what possessed me to move our entertainment in a different direction.    A stroke of luck, Freudian Slip  or a Rave from the Grave?  In retrospect I am going for the latter: with only water based drink passing my lips throughout the day, I went plumped for using PIST.

Folk music has always been dear to our hearts.  Irish folk music could not fail to hit the spot with its association to a departed member of the family.  We were even able to reminisce over a shared concert thus following the wishes of M’s best friend: ‘use my name: never say you have lost me’.  So we were singing along together, all three of us.  I am sure I saw her lips move on the photo next to the sofa.

This is the point about Personal Integrated Stimulation Therapy and if you will pardon the pun there is no hangover.  You choose your moment and go for it.  It’s all a question of the right thing at the right moment.  i would have been wasting my time earlier in the day, as the duvet was in place until late evening, as M was parked on the sofa .

Will we get PIST again today?  I honestly have no idea.  We may make the carnival later this afternoon.  If it seems appropriate  we will be at a concert in our lounge via YouTube later in the day.   It might even be UB40 tonight; to bring back those wonderful memories of the first concert we ever went to together 25 years ago.

I had a stark reminder of what lies ahead with this dreadful condition yesterday.  Phone calls from M’s Aunty and my sister in law reminded me that this journey doesn’t get any easier.  Their approach to caring for their husbands sets a standard that I hope to maintain.  I have seen their unconditional love shine through until it wasn’t possible for them to carry on any longer.  The former because of exhaustion and the latter because of personal safety.  Their current situations highlight that there is till a lot to learn about what lies ahead.

I am pretty handy at sorting out entitlement or getting a reasonable deal in any situation.  My record as a trade union representative is sound in both the private and the public sector.  Once on the shop floor I soon learned how to get a decent piecework price and how to keep the Foreman off your back.  I was fortunate to land up on a Section where the Shop Steward knew the ropes and handed them over when he became a Local Councillor.

Later in my career as I had moved from a job to a profession with involvement in the Race Relations Industry, I had to beat a hasty retreat.  The impending death of my first wife meant  hasty rearrangement of my career path.  My emasculated wife said:’don’t take that job you will be bored’.  She knew that my heart lay in the job I withdrew from: promotion in the Race Relations Industry.  However, I manged to squeeze in ‘just a little’ representation in my 25 years work in with a Local Authority: elected to local and regional roles in the trade union movement.

The point I am making here is that I have extensive experience at negotiation and improving the terms and conditions of the workforce.  What is difficult to come to terms with now is that I now have appalling terms and conditions. Yet it gets worse than that: those who are paid to assist me in my caring role play their cards very close to their chest.  Rights and entitlement are apparently not enacted in statute they seem to be randomly distributed by a benefactor: the Local Authority.  I recall writing elsewhere that the lot of the carer could be described as the Endless Hours Contract: a voluntary commitment to a loved one where your employer the Welfare State exploits your commitment to the Marriage Contract.  I will return to the position that C and J find themselves in to elaborate my point.

Both parties are in distress and disarray as they try to make sense of their escape from an Endless Hours Contract. C has handed D over to a Nursing Home as she could cope no longer after 15 years on such appalling terms and conditions.  J had matters taken out of her hands as the Mental Health Act was used to take away J’s liberty.   Yet both now face a situation of extreme distress and uncertainty.  C doesn’t know if she will be able to put food on the table until a Financial Assessment has taken place.  J is unclear if J will be allowed to stay in the Nursing Home where he has been happy for the last 3 years until a Review has been conducted.  Uncertainty prevails and there is no Trade Union to fall back on:   you can’t  call on your Shop Steward to represent you when you are facing: reviews, assessments or the politically correct nonsense of Local Government.

I think there is a job waiting to be done here Unite.

There is a saying that is often repeated by those dealing with dementia: ‘once you have met one person with dementia you have met one person with dementia’.  In other words no two cases are the same and personalised care is essential.  This approach has been exemplified by M’s G P this morning.

M has evidence of a urinary infection that may go some way to explain her increased confusion and tiredness.  A sample has indicated some minor problems and has been sent away to the lab for analysis.  M’s G P has delayed the introduction of antibiotics until he has considered the lab report in a few days.  Little point in using a sledge hammer to crack a nut, with someone who is both sensitive, and reluctant, to take medication.  It is simply not worth taking the risk of further complications until it is clearer about what is going on.  In the mean time cranberry juice might ease things and help the body sort out a minor infection.

There are other issues to reconsider in terms of M’s long term care.  A conversation is needed with the Stroke Consultant to consider if attendance at his Clinic is advisable.  If the G P is able to keep a close watch on things then the anxieties about attending hospital appointments could be avoided.  A similar reconsideration needs to take place over attending the Cardiac Clinic.  We are very fortunate that M’s G P has a background in Elderly Medicine and knows his patient extremely well.  He is perhaps best placed to monitor treatment protocols, at our Medical Centre, rather than M waiting around in Clinics at the local hospital

This has been a very challenging couple of weeks.  M has been very tired and confused of late.  Some of it may be down to both this hot spell  and the lack of continuity with carers, with C away on honeymoon.  Just to be on the safe side I’m off to have a wee sample checked out in an hour or so.

Despite what appears to be further deterioration in M’s condition there have been some lovely moments in recent days.  Seeing M dressed up looking like a model was heartening.  It made all that clothes sorting worthwhile.  Things should be even better when her wardrobes contain a few things that feel comfortable: I am sure that stroke has made her an even more  sensitive lady.

I  wonder what sort of the looks I will get this morning as I forage for panties and bras yet again .  The woman needs the right level of cover and support at her age.   I resist asking for too much modelling of potential purchases, as few shop assistants share the slender figure of my lovely wife.

The resident ‘Singer Lady’ has also been in good voice.  Obviously a fan of ‘Music While You Work’ in her younger days; she has a good repertoire of numbers.  She has put on a good show most evenings and her range is extensive.  There are not many artists about nowadays who can move from South Pacific to Simon and Garfunkel without missing a note.  I reckon that domestic duties robbed her of a career from what I’ve heard this week.

I am hoping that we now have a regime that suits M’s energy levels.  The secret is to ‘let sleeping dogs lie’ and wake up under their own steam.  In this hot weather and at our age what’s wrong with several Siesta’s in the day?  With a little bit of luck our journey will be on slightly better footing in the next week or so.  Hurrah C is back a week today and I am sure if the Honeymoon has been as eventful as the Hen Party there is a treat in store for us.

Since we moved to be beside the sea side we have watched a horror show unfurl before our eyes.  At first it just seemed  that aging was taking place as D began to fade as the strong outspoken Yorkshireman we had always seen on our visits.  After all he was approaching 80 and at first it just seemed he was getting old.  Fifteen years later he is in a nursing home and we have watched something approaching a horror show unfurl before our very eyes.

Watching things first hand has helped me to learn a little more about dementia.  I can’t remember when Alzheimer’s was first flagged up as the cause of D’s decline.  It matters not: the point I am making is we have seen episodes of the horror show whenever we popped round to see M’s Aunty and Uncle.  When I wrote my previous post on the Girl Guides I forgot to mention Chief Guide C; she has taught me so much about how to approach someone who is trying to cope with dementia.  Throughout her long struggle her patience and unconditional love for D has shone through like a beacon until her batteries went flat.  She arrived at a point when she couldn’t  cope any longer and had to put D in a Nursing Home.

C could be renamed as ‘Aunty Nellie’ the experienced hand showing an apprentice how to go on.  To a large extent this craftswoman has helped me to learn the tools of the trade.  Watching her  her ply her trade has given me a basic understanding of how to go on.  It also gave us both anopportunity to dip our toes into the water with dementia not anticipating that swimming would soon be on our own doorstep.

In recent years we have popped round to visit C about once a week and seen the condition in full swing.  Sometimes we have acted as ‘Rescue Rangers’ and taken D out to try and shift his mind from ‘wanting to go home’  At others we have had tea and cake and beat a hasty retreat wondering how on earth C coped with the relentless challenges on her own.  I could go on but my appreciation for C’s openness about her struggle is immense.  In a sentence her advice would be: ‘take each day as it comes and don’t try to analyse things’.  it has breaks her heart to know what lies ahead for her favourite niece.

Waxing lyrical about the Girl Guides I almost forgot a new member of the troupe.  In the last couple of weeks K next door has mentored me through many a difficult moment.  She has drawn on her experience of caring for her mother to try to help me make sense of things.  At moments of great tension she has reassured me that I have ‘got it right’.  Having someone so close at hand with experience of dementia is invaluable.

I am wondering if tiredness led me to overlook two important members of the Guide pack.  I’d better be careful who I admit my faltering memory to because you never know who is reading your Blog!  I wonder if David Cameron is still the Prime Minister?

I know I have posted rather a lot today but I need to remind myself that when M has been sleeping she wakes up completely confused.  M has never been a morning person and has always needed time to come round in the morning.  Now she dementia she needs 10 times that amount of time to come round, as I have just learned to my cost.

She rose from the sofa about 15 minutes ago.  Apart from meal times she has spent most of the afternoon and evening on the sofa .  I was pleased to see her as she joined me in the kitchen and that is when i made my first mistake; talking to her.

What I need to do in future is use body language to let her know how pleased I am to see her, not ply her with questions.  She does not need interrogating when she is trying to come round and trying to work out who she is and where she is -you silly man.  Now she feels: ‘I have told he to go back to bed because she is in the way’: a complete misunderstanding.

Shape up and listen or there will be lots more lonely night for you old man.