I would be difficult for me to sign up but the Girl Guides have been invaluable as I have tried to deal with  dementia as the elephant in the room.  It wasn’t as if I signed up to the organisation: it was almost as if I stumbled blindly through the maze they held out a helping hand.

My Chief Guide has been H my Admiral Nurse: now she is a one.  None of the political correctness that infects the Public Sector with H.  She is prepared to say it as it is without beating about the bush.  We get on like a house on fire and talk the same language: quite clear about our heritage.  H put me onto Teepa Snow who is a guiding light in the filed of dementia.

Then there is ‘Lady in Red’ (you should see that dress) our Dementia Engagement Officer.  A bundle of fun almost a giggle a minute but as sharps as a tack at holding a novices hand.

Moving onto the formal side of things our Social Worker is no mug.  She has an astute approach to the condition: far from one of these ‘go with the flow merchants’, who I find so tiresome.

The Chemist down the road is a little gem in all senses of the word.  Always a bundle of fun who will generally see me at the ‘drop of a hat’ to answer my latest query.  She even persuaded me to use Kindle to check out a novel source on dementia.

The Night Owls at the Single Point of Access have been a great comfort in the last few days.  They have helped me to find my way through a difficult area of the maze when the going got tough.  Empathy and compassion shine through even in the early hours in the morning at the end of a long shift.

Finally the Practice Manager at our Medical Centre and her staff have turned somersaults to support us on our journey.  We could not have asked for more to help from them on our journey.

Never joined the Boy Scouts myself but if you are trying to find your way around maze of dementia call on the Girl Guides.  You may not find your way out of the maze but your journey might just be a little more comfortable.

Once dementia is the elephant in the room you are thrust into the world of experiential learning.  Teepa Snow suggests that you need to become a detective to try to figure out what is going on.  I would liken the task to trying to find your way through a maze with  your eyes shut.  Somehow you just have to figure out a way to go on your journey with this dreadful condition.

Before our journey started I had already dipped my toe into the water with dementia.  Jus after dad died my brother’s behaviour began to puzzle the rest of the family.  His memory became extremely poor and his behaviour strange.  J had spent a life time in the car industry and he could take a gear box apart with his eyes shut.  Whenever I had a problem with an old banger I only had to pick up the phone and J would be round in a flash  to get me back on the road.  J was now putting diesel in his petrol fueled car.

I recall shortly after dad died I couldn’t make sense of conversations with J.  He couldn’t grasp things or remember our plans for dad’s funeral.  He seemed to have to write everything down on bits of paper.  His wife was finding him difficult to deal with at home and began to seek diagnosis.  You’ve probably guess by now: J had Alzheimer’s disease.  Following ‘attacking’ a carer during a period of respite he was Sectioned and has been in a Nursing Home for the last three years.

With both my brother and mother suffering from dementia I began to look into the condition from a number of perspectives.  That was my ‘cover story’ here as I already had concerns about M’s memory.  Fortunately, a local college ran a free Distance Learning Course: ‘Understanding Dementia’.  This gave me a basic understanding of the condition and the interactive nature of the course helped me to consider what might be happening to M.

Once M suffered stroke I curtailed my involvement in the Anxiety and Depression Group that I had helped to set up at our Medical Centre and jumped ship to the Memory Service.  I reckoned that inside involvement could only help our cause and my induction involved attending a Dementia Friends Course.  K the Dementia Engagement Officer taught me a valuable lesson during the course: the emotional memory remains in tact.  Only this week her message helped me to realise how important it is to grasp the importance of the emotional memory.

M sat in the dining room crying over events from almost 20 years ago. The tears flowed as she remembered an incident where she had upset her son by requesting him not to visit on Saturday’s, as it was one of my contact days with my three children.  She recalled so vividly his eyes filling with tears as she told him to stay away.  Her emotional memory still there, even though 5 minutes later she made a second cup of tea because she had forgotten where she had placed her earlier brew.

So dementia comes into your life and you have to feel the way through the maze on your journey.  My advice is to be guided by Teepa become a detective and also learn braille: take every opportunity you can to figure your way out of the maze.  You may make many wrong turnings as you seek your way out of the maze but at least you will have something to guide you on your way.

One of the important aspect of my caring role is to become a surrogate ‘mum’ for M.  When she is wanting her mum I have to clarify what she needs and try to sort it.  So this morning none of her clothes fit: they are all too tight.  My immediate response is P will fix it.  I have just returned from a shopping expedition with garments that should do the job.

M needs to know if there is a crisis I will do my best to solve it.  She has fond memories of her mum finding her clothes and that now becomes an aspect of my caring role.  It doesn’t matter if the trousers, pants and  bra don’t fit.  The important thing is that I tried to solve things: just like mum used to.  In fact, I have told her whenever there is something that she can’t figure out, just holler for me and I will be by her side like a shot.  I would argue that providing unconditional love and showing that M is my number one priority is a critical part of my caring role.

Postscipt

None of the new purchases are suitable in one way or another.  They will all need to be returned in a day or two.  However, we sorted through some of M’s clothes stash and actually found a pair of purple joggers that fit.  There are also  seven pairs of trousers to go to a charity shop, as they will never fit.  M is in great form now and has really appreciated my efforts.  She knows if there is a difficulty I will always try to help.  That’s what surrogate parents are for!

At moments of difficulty M often asks: ‘where’s my mum?’  We have been together for 23 years and I think M’s mum had passed many years before we met.  So what is happening here you might ask?  Fortunately, prior experience, once again, has come to my rescue.

Four years ago I watched my mother at the hospital bedside of my father as he lay dying over  a long couple of days and nights.  I had to break the news that my dad had passed, following a phone call from the hospital, as we had gone back to the family home to take some rest.  When we awoke in the morning I had to tell mum that dad had passed once again; as the sleeping tablets meant that my original chat had not really registered.  Just having to tell your mum that the centre of her world had passed is difficult enough but telling her twice takes the biscuit.  I would have told her a 100 times if necessary and that would have only been a down payment for the wonderful parents I have had.

After dad died mum found it difficult to cope on her own and has chosen to spend the remainder of her life in a Care Home.  She lives ‘away’ as they say up here so I used to phone her on most evenings.   A couple of years ago she asked me what she had done to upset my dad because he was not visiting her.

I have to break now as my wife is crying in bed probably for her mum: yet again.

Back now calming effective and M has dropped of to sleep.  The old foot massage and a bit of EFT tapping has done the trick, alongside topping up the supply of tea.  I always complete my tasks with ‘my pleasure’ to remind M of the Baltic Cruise we went on to celebrate her 70th.  I’m catching her up in February and I have already floated plans for mine.  Goodness me I’m rambling this morning so to continue my theme…

My response to my mum’s question was WRONG .  I told her dad had passed and it would be impossible for him to visit.  I probably committed the cardinal sin and said : DON’T YOU REMEMBER.  It took me while to grasp that  mum had vascular dementia and she couldn’t remember that dad had passed and reminding her was unhelpful.  I should have told what is referred to a ‘love lie’ or changed the subject as soon as I could.

So learning from my mistake my response this morning has been a little more informed.  When M asks about her mum I encourage her to talk about her: I use her name.   I also say as your mum is not here at the moment I can help you.  What would you have wanted your mum to do this morning ?  M still misses her mum and this scenario will be repeated: it is a cry for help.  Who else would you want when you can’t make sense of things, or find your underwear, when you wake up in the morning?

One of the problems when you are caring for a loved one with dementia is that ‘Nellie’ is missing.  What’s he on about now you might ask?  Well I’ll do my best to explain.  It won’t take long to get you up to speed and that is the problem with this job – there’s no apprenticeship; you are thrown in at the deep end.

When you start any new job it is likely that an ‘old hand’ will try to show you the ropes; even if it how to pull the wool over the gaffers eyes.  In my working life there has always been someone who showed me ‘how to go on’.  In my first job, as a cost clerk, the previous incumbent showed me what had been his job.  Moving onto the shop floor, to recondition cylinder blocks ‘Rattlin Cattlin’ as he was know, showed me the requirements of the fist op on the line.   He eventually  left and became a millionaire by setting up a chain of decorating material outlets.  Not all of my ‘Nellies’ went on to do so well for themselves but throughout my career someone has helped with my induction..  It isn’t quite like that with dementia.

The familiar scenario is that you arrive at a medical consultation as husband and wife:  you leave as carer and cared for one.  If you are lucky  you leave with a few handouts and advice to ‘accept the new reality’.  So there I was about to face the greatest challenge of my life, thrown in at the deep end without ‘Nellie’ as a life belt.  I am not sure how it happened but one day I found my ‘Nellie: Talking Point.

Providing you are reasonably adept at using the Net, Talking Point has to be your ‘Nellie’.  This excellent Site gives you access to more experienced hands who will share their experiences of their journey with dementia.  At any time of day or night you can pose a question and very quickly you will get an answer.

So the first step to take when you are on a journey with dementia is to Log On here:

Talking Point

Further suggestions on how to navigate your journey  will follow.

I want to make it clear before I post this piece that I have not been drinking alcohol today.  In fact I put a can of beer in the fridge and there it remains.  Only water based drinks have passed my lips today.  The acronym of what I am suggesting PIST is the obvious reason for this level of detail.

I would contend that the current approach to supporting those with dementia needs to be reviewed.  There is an emphasis on the person with dementia getting involved in all sorts of groups from Memory Cafes to Singing for the Brain and much more.  I want to argue that such an approach has limitations and that the emphasis should be on the carer rather than the cared for one.

It is possible that M’s disposition has pushed me down this road.  M tends to be introverted: the listener who avoids crowds.  So joining the throng of Groups would have required a personality change at a time when she would feel even more vulnerable than ever in strange surroundings.  Imagine the anxiety of someone with dementia seeing a sea of faces in unknown surroundings.  I hope I have made my point.  Therefore, something different has been required in our little world.

When dementia strikes the individual concerned seeks safety in familiar surroundings.  Their world begins to get smaller and new experiences are avoided.  ‘Get them out more; involve them with others’ is a familiar cry from the professionals.  I would argue that such an approach was not appropriate in M’s case: the battle could never be won and the victory would have been shallow. I accept that with my background in adult learning I perhaps thought I could do it better.  Now I know with PIST that I can, and do.

It is possible to integrate most of the approaches that are used to stimulate people with dementia, in the home, throughout the day.  A little bit of imagination can build such things as singing and reminiscing into all sorts of activities.  I have already mentioned how our Glen Miller evening did just that: M was reminiscing about her dad to music.  Conversation can be steered in the right direct at most times of the day to provide cognitive stimulation.  The other advantage is that you can pick your moment to introduce elements of PIST.  We all know that  ‘Duvet Days’ are a feature of dementia and that is a time to let rest be the panacea and stimulation to be put on hold.

If home based PIST is seen as the way forward then the focus needs to shift to carers and equipping them with tools for the job.  Some form of induction and ongoing training needs to be developed and implemented pretty darn quick.  If I still have failed to make my point then think of this.  Home based carers are with their loved one 24/7: just think of the damage they can do if they don’t really know what they are doing.  How can couple of hours at a Memory Cafe every week do any more than scratch the surface.  Having a chat about things with fellow carers is one thing but what are all those who enjoy their weekly getogether doing for the rest of the week?

I will look at some of the options for training home based carers in a later post.

There is one obvious reason that M has been upset this week: new faces have been turning up on the morning that she has carer sits.  C one of her main carers is on honeymoon and so their have been new kids on the block.  M doesn’t need personal care – ‘the sits’ are for me as much as her.  It’s an opportunity for me to have a break from caring duties and have ‘me time’.  However, I have not risked going out since Chloe has been away until I have checked out what is on offer from her replacement.

It would be ridiculous to expect the transition in care to be a seem less garment. We often thank our lucky stars for the quality of care that is on offer when you consider the rewards of being a carer.  Working conditions are poor and the daily challenges significant.  For most carer their wok is a vocation not a means of paying the rent.  Some of them work long hours without breaks day after day.  None of this helps when strange kids are on the block.

There have been days during C’s absence when M has been uncooperative with her replacements.  Her reaction has ranged from refusing to get out of bed to quasi hostility.  Change is never easy with dementia in the house but when your best mate is absent things become problematic.  So I have taken action this morning to ensure that C will be back with us as soon as she returns from honeymoon.

I visited the Care Agency this morning and laid it on the line.  If they are unable to provide continuity with carers  we will explore Direct Payment arrangements and employ our own carers.  I think they got the message and I anticipate C will be back in the fold soon to tell us of her adventure in Cyprus.

Packing to go home is something that M does on most evenings.  Although we have been her for 15 years M thinks this is not where we reside.  Such confusion is not surprising because this town is where she settled as a youngster, then a couple of years later returned to the place where she was born  Her family moved here in number but M’s father could not find decent employment and returned to his former employer in the Midlands.

M’s behavior is not unusual where brain damage from stroke leading to dementia has occurred,  It could be seen as an expected trend in presentation for most people experiencing dementia.  My dilemma this morning is what to do about the washing basket full of items to be taken home.  How can I deal with the wet garments waiting to be put out to dry unless I replaced the packed items in their usual places?

My solution this morning is to carry on doing what I have been doing for quite some time.  My early morning duties are generally about putting the place back into some sort of order and hunting for missing gear.  The washing basket has to be emptied as I need to use it.  Whether my detective skills are effective this morning remains to be seen.  However, if I manage to track down the missing handbag and spectacles then this will ease some of M’s concerns first thing this morning.

All I can hope for is to find some of the missing things and put the place back into some sort of order.  M wonders what the people who moves things around have got in for her, she has even threatened to: ‘murder the person who ripped her precious dressing gown’.  They better stop their antics soon because if she catches them they are in for it.

This post is an attempt to take the reader on from yesterday evening.  I am confident there is something in my approach to sorting out poor sleep patterns when dementia is the elephant in the room.  Once again I am fortunate that I am not starting with a blank canvas on this matter.  As I may have mentioned before, I have spent years trying to regulate my own sleep pattern, as early morning wakening has been the bane of my life.  It would only be fair to say it has had more than a little impact on the lives of those around me; particularly my lovely wife.

When you are tired it is not easy to think in a logical manner and this may become evident in this post.  However, i am confident some sense might come out of this piece and it will not become a ramble.  There is no doubt in my mind that Paul McKenna  has some interesting points to make about sleep.  His thesis is that sleep patterns are learned and it is possible to rejig them with disciplined behaviour.  So lets take it from there this morning ….

We were both wide awake at 3 am and M was suffering from discomfort in her left leg: a legacy from stroke.  So we got up and did something boring; M walked around to relieve discomfort; I tidied up the kitchen. We worked in low level lighting and knew we would go back to bed to try to gain more sleep.  This worked: M is asleep and i have arisen at 5 am my normal time.  So we followed Paul McKenna’s mantra if you are lying in bed and wide awake for longer than half an hour: ‘get up and do something boring’.  We did and it worked.  So we have a method of dealing with sleep disorder but what about last night you might well ask?

There is every prospect of blue for day and pink for night acting as visual reminders of time.  This approach worked last night and helped M in her transition from sofa to bed.  The usual frustrating routine, for any tired carer, remained but the shift from the sofa to the bed seemed to work.  I won’t go into too much detail but if ever you need a test of patience it is here at night.  There is an endless (well it seems it) search for one thing after another: drawers are opened and closed; wardrobes are opened and closed; garments have been removed by strangers or thieves; someone has stolen her toothbrush; her glasses case is nowhere to be seen etc etc.

Peace does not emerge once M is in bed.  The bed is; too cold, hot or springs are making it uncomfortable.  Her PJ’s are too tight, cut into her nether regions or even smell of perfume.  Someone has taken her pillows and the replacements are: too high, low or hard.  This preparation for sleep routine seems endless before I can switch off the bedside lamp and get my tired head down.  It is repeated with variations every night.  I have not considered if I can change this aspect of M’s presentation as there seem to be higher priorities:  a decent night’s sleep.

I am optimistic that blue for day and pink for night has potential.  There are lots of other visual reminders I intend to place around the house today as prompts to fill in the gaps in Maureen’s memory.  Hey I have just remembered it all becomes very simple: day is Sky Blue time as my team Coventry City.  The evening, as the sun sets, the Reds come on down: Nottingham Forest is M’s team.  One of M’s catch phrases is: ‘come on you Reds’.

Just had an idea to use colour as a way of  helping M to identify what  time of day it is.  She generally wears blue joggers in the day.  Her P J pants are pink.  So I am going to use colour to help her remember if it is day or night.

It’s now 8.30 pm and we have both put on our P J pants.  I have used the excuse that if we fall asleep downstairs we can wake up, climb the stairs, and just fall into bed without changing our clothes.  I think it could be an approach that works as a prompt to remind M when bed time is near.  Even if she dozes off downstairs her trousers might just fill in a missing building block in her memory.

I will try with this for a few days and see how it goes.  More on this theme later ……