The good news: I a managed to get some more sleep following the early morning incident.  The even better news: it took place in the marital bed.  That was good for both of us, as we soon became a closely married couple again.  M reached out for me with the toe of her left foot; something she has done for as long as I can remember.  I think it is her way of finding out if her husband is still beside her.  When I started coughing she offered to get me a drink.  Phew – she knew it was me  beside her in bed and not a monster.

Any reader of this thread will know by now that I have experienced the benefit of ‘Talking Therapy’.  I have praised the skills of P at our Medical Centre, so there is expertise at hand.  M has seen P but came away feeling he was trying to hypnotise her and she found that unsettling. Wait a minute my memory is faltering here: M did have counselling when she became hypersensitive to all sorts of aromas.  This time a young woman gave her support with some positive benefit.

So out of all this rambling something positive emerges.  That is the benefit of Blogging – it is a way of ordering your thoughts and deciding on what to do next.  The organisation where M got support is a short drive away.  You can self refer and I can walk in this morning and see if they offer talking therapy where dementia is a factor.  What a move forward if M could put some of the bad things that have happened in her life into perspective.  As she still has periods of lucidity it is possible that she could  she has been the victim, rather than the cause, of dreadful experiences in her life.   She might see that you can’t runaway from the past, or pretend it didn’t happen.  If I can understand that message surely M can – even when she is suffering from dementia.  Her brain may be damaged but she still has the capacity to put things into context.

It’s 2.40 in the morning and I am reeling from a rude awakening: a stark reality check.  Hence posting at all – never mind this time in the morning.  Have a break from blogging or posting on Talking Point?  You must be joking!

M went to the loo about half an hour ago and came back ranting and there is nothing I can do to help her.  She doesn’t know where she is or more importantly who I am.  The best place for me is down stairs on the Lap Top as we don’t want another screaming outburst: that’;s just too upsetting for both of us.  No I will blog and rest down here if at all possible.  Using the back bedroom is out of the question as I will explain.

M got lost on her way back from the loo and ended up in the back bedroom.  She said: ‘the people sleeping in there had taken her special bed cover’.  I assured her that no one was sleeping in there and the cover had been placed on that bed because it would be too warm on ours.  I also told her that there was no one sleeping in there we were in the house alone.  I recall her response: ‘here we go again’.   Then she said: ‘Who does sleep in there then you or some of your friends?’ She then went on to complain about: the people running this place; the poor service she was getting; and the need to get the bed cover cleaned.

This was one of those occasions when I challenged M’s reality with: ‘there is no one sleeping in there’.  In retrospect I may have got it right: give information and move on.  I also have got it right to ‘move out’ because of the dangers of being seen as a dangerous character from her past; who may cause her harm.  It is one of those occasions when I simply have to heed the advice of the Clinical Psychologist from the Stroke Team about demons from the past.  This is also one of those occasions when Buddhism is helpful.

One of the central planks of Buddhism is to move away from: ‘self cherishing to cherishing others’.  To an extent my dream of meeting Teepa Snow has been shattered by this rude awakening.  So what a little dream down the drain?  The important issue is that M’s nightmare continues: dementia and fear of men. My focus has to revert to M and a reconsideration of if it is ‘too late for therapy’.  Conventional wisdom suggests that it is, but it is just worth revisiting the issue.  I have already revisited the issue of Blogging: it is a central part of my coping strategy.  Carry on Blogging has to be my mantra.  Taking a break who was I trying to kid?

Need to stay off line for a couple of days and catch up on some reading.

Normal service will be resumed on Thursday

One thing for sure being a carer where dementia is involved you can be called into action at any time of day or night.  It is never a good idea to take your eye of the ball or take 5 minutes for yourself.  Get it wrong and you will find yourself in all sorts of trouble.  I will give a couple of examples that make my point….

M had slept for most of Saturday morning and I manged to coax her downstairs with the promise of lunch.  She decided to follow her GP’s advice and walk around the garden to try to relieve discomfort in her left leg.  I carried on with preparing lunch.  As I popped something into the oven I thought I saw her pass by the kitchen window.  A few  minutes later I checked on her whereabouts and she had gone.  I had left the back gate open and she had scarpered.  Panicking I just caught sight of her disappearing round the corner.  Then ‘should I shouldn’t eye’ came to mind.  On previous occasions she had always found her way back home: sometimes with the help of the Local Constabulary.   Panic took over as I remembered it was Carnival Day and if she got caught up in that lot she could be a gonna.

Thankfully I made the house safe and drove off in a flash to find her.  Unfortunately, I am advised not to run since bilateral hip replacement.  I caught her some distance away and hailed her with: ‘hey blondie your chips will be burning.’  She said she was pleased to see me as her feet were hurting.  Not surprising really: odd trainers on both on the wrong feet.

At lunch time today I noticed M’s blood pressure tablet still on the dining room table.  She had forgotten to wash it down with morning coffee.  She washed it down with ice cream as she demolished her sweet.  No real problem there, except that when it is time to take her blood thinner this evening she may genuinely believe she has already taken her daily medication.  I simply have to be more vigilant on this front.

The rituals around bedtime can be taxing.  Hunting for missing items is frustrating particularly when you have had a long day you but unless I pull myself out of bed it could be expensive.  If M has returned downstairs to top up her water supply for the night it is likely to look like Blackpool Illuminations with lights left on.  It is also worth doing a final, security check just to be on the safe side.

The point I am making is that I have to be constantly on my guard.  My ability to doze off at will is risky particularly as the condition progresses.  When M can wake up at any time not knowing: who I am; where she i;s and what time of day or night it is – then I think you might just get the picture.

Great news Teepa is coming to London to run workshops on her Positive Approach to Caring on the 19/20th of August.

Full details are in this monthly FREE Newsletter.  Why not sign up now for some radical ideas on how to support anyone’s journey with dementia?

One of the problems when your loved one has dementia is how to deal with the reaction of those around you.  There are problems with family understanding how to behave towards the sufferer.  It is likely that M will revert to her ‘Hostess With the Mostest’ role when family are around: a ‘nothing much wrong with me’ mode.  This makes really difficult for those who pop in occasionally or speak to her on the phone.  She simply confabulates – makes things up – to deal with their barrage of questions.  So not knowing how the condition is progressing they have little hope of making helpful reactions to her presentation.

The other component in all of this is the wider community.  I have stood back on occasions when M has asked people things that make little sense.  She has made comments in all sorts of situations that would confound the best of us.  Unless the recipient of her comments ‘twigs’ then things can get out of hand.  If she wore a badge or carried a stick then things might be different.  One thing that could help is for communities to become Dementia Friendly.  The short piece that follows will shortly feature in a magazine for our local Mental Health Network:

Dementia Friends Course

It must be over a year ago now, and time passes so quickly these days, since dementia moved into our lives.  Once that dreaded word is used and there is a reluctance in the Memory  Service to use it; with a preference for ‘memory issues’ your life changed forever as uncertainty darkens your door.  As I have said before you go to the Clinic as husband and wife: you leave as carer and cared for one.  It is possible you leave with little else apart from general advice about healthy life styles and the odd hand out.

I think it is possible that I had a stroke of luck in all of this and by chance stumbled across something that has really helped me in my approach to caring for my wife.  The other day she was in floods of tears about an event that had happened 20 years ago.  She had remembered the tears in her son’s eyes when she had told him to avoid visiting at the weekend as they were the days my children might be at her house.  You’ve probably worked it out by now we are both divorced and Saturday was my contact day to see my children.  One thing I am perhaps not making clear, my partner (in those days) was telling her son not to bring his children round as mine would be there for the day.

As she howled in the dining room with the thought of the upset she had caused over 20 years ago I wondered what was going on.  She has dementia yet she is remembering stuff from such a long time ago.  Then suddenly it clicked something from that Dementia Friends Course that  K  from Dementia Engagement ran.  My wife was using her long term memory and dealing with her emotional recall.  Both these faculties would still be intact.

I could go on about many positive aspects of the Dementia Friends Course just remembering: ’Once you have met one person with dementia you have met one person with dementia’ has kept me going: when the going has got tough here.  It has helped me to see that although we are all travelling along on the same path our journeys will be different.

During the last week I have attempted to launch a fight back against dementia.  This has involved watching and listening to M to try to establish where we are on our journey with dementia. The focus has been on controlling our environment and minimising distress.

There is some evidence that the new approach is having a positive impact.  Unfortunately, this hot spell and infection have had a dampening impact on progress.  On occasions I have been taken aback by what I have seen: when my ‘model appeared’ it brought tears of joy.  When the daily underwear search for comfort and fit continues I suffer quite the opposite emotion and feel impotent to intervene.  So enough rambling what next ……..

To some extent it is going to be more of the same.  The land line is going to remain off for most of the time: incoming phone calls cause distress.  No more going out to have fun and leaving M with ‘baby sitters’ for me.  Trying to stay beside M in bed i.e. not getting up at the crack of dawn would be a start.  Eating slowly so I automatically give prompts of what to do next is an imperative.  But there is more than that………………

I have daily respite during M’s down time – ‘I’m just going to rest my eyes. leg’  or whatever.  This is when I need to Blog to make sure I am by M’s side as we do things together throughout the day.  If I am to provide the starting routines for her declining short term memory I need to be by her side not at the PC or asleep in the chair.  Who knows this may be a way of curtailing ‘packing to go home’:  possibly a nightly routine when she is struggling to fill her time.

No I am not a salesman for Americans: I have already waxed lyrical over the work of Irving Kirsch, now I need to focus on Teepa Snow.  Her positive approach to dementia is based on capabilities rather than limitations.  She is downloading her Positive Approach to Care in London in a months time.  I need to be there as a carer for M and to develop my voluntary role within Dementia Engagement.  My background in adult learning makes me an ideal candidate to share PAC with fellow carers in this area.  Guess who I will be contacting shortly?

It’s always a risk in this game but I am optimistic that things are beginning to settle down here a little.  The changes that we have made to M’s environment are beginning to pay off.  I think she has gathered that I have taken seriously her question what about us?  Let me explain…….

M has consistently argued that leaving her with a stranger while I go out and have fun is not what marriage is about.  I agree, and confess, that I have got it wrong.  Seeing a carer sit as an opportunity to do my own thing has been unhelpful.  The answer is to change the environment: not run away from it.  If I need a break from caring I can take one every time M rests her eyes.  I will no longer leave her with ‘babysitters’ while I go out and enjoy myself.

To start the ball rolling in this direction we will cancel yet another sit tomorrow.  Why would we want a stranger in our house to interfere with our domestic bliss?   M has often says she if she is training people to do things she is able to do herself.  She has a point.  My approach has been both annoying to her and disabling .  Why does she need someone to follow her around the garden as she hangs out the washing?  She has had a stoke: brain damage is the cause of her poor memory not mental illness.

It is very likely that we will also cancel Wednesday sit and not have carer in the house until C’s grand return from honeymoon on Friday.  I think we will give her a Welcome Home Party.  We want to leave her in no doubt that she has been missed: Maureen has asked if she is coming almost every day over the last couple of weeks.

M and I will have a chat over the next few days about what help we need in the house.  If only we could get M back on a Wednesday then my M could look forward to her weekly hairdressing appointment.  How lovely it will be when we get all this back on an even keel: a fresh start that helps us to resume our life as a closely married couple.  When M asks if she is ill I remind her that she is recovering from stroke and sometimes her memory is not as good as it might be.  Now what did I promise her we were having for tea?

I make no apologies for being something of a salesman for the work of Teepa Snow.  She advocates that carers need to become circumspect and try to look behind the communication of their loved one.  In short, Teepa suggests you need to become a detective.  So with Teepa’s suggestion in mind it is worth reviewing a kitchen sink conversation this morning…….

There I am washing the dishes when M asks out of the blue: ‘when are you back in school?’  I think about her question for a while and she follows it up with: ‘how long are the holidays these days?’  I mumble something that I hope is appropriate and move onto a tea cup.  There are a couple of problems for me here, but at 69 I rule out that M thinks I am still a pupil.  What I am not clear about is if she considers I am still Supply Teaching or we are back working together in a Community College many years ago?

Teepa discusses ‘time travelling’ extensively in her approach to dementia.  My detective skills need honing as it is not always clear to me where M is in her life cycle.  It is possible that she remembers me while I still had colour in my hair.  Clearly on some  occasions she has no idea who I am or what she is doing with me in this house.  This is all extremely difficult as getting it wrong can create  havoc.  It’s almost as if I need to work out who M thinks I am before I respond to anything.  I think I will have to put that DVD on again and see if I can hone up my investigative skills just a little more.

I will always be eternally grateful to H my Admiral Nurse for pointing me in the direction of Teepa Snow.  Her work is groundbreaking in the field of dementia.  It is simple to get a feel for her ideas as lots of resources are freely available on the Net.  H loaned me one of her CD’s and I eventually splashed out and sent for one myself.

Teepa’s approach has come to my rescue here this morning.  M has been struggling at breakfast for some time now when it comes to spreading bread for her favourite marmalade sandwich.  Recently her efforts have led to all sorts of constructions on the sandwich front.  I suddenly had a brainwave this morning: become her ‘Nellie’.   Let me explain…

Just think of the first time you sat down for a formal meal in new surroundings.  What did you do?  You waited to see what others were doing then you tucked in almost confident that you followed the correct etiquette.  So what did I do this morning?  Firstly, I slowed down on gulping my porridge so I was just ahead of M.  Then as I began to make my sandwich I passed Maureen the gear to make hers. So she sat next to Nellie (me) copied what I was doing and everything worked out reasonably well.  Hey Teepa I’m modelling……

H I owe you more than one for your guidance on this journey.  You have rescued me on many occasions.  I felt good the other day when my ‘light bulb’ came on and you said: ‘you are doing fine, those that love you will understand: don’t worry about the others’.  It is reassuring  we have Admiral Nurses in this area as they have a comprehensive understanding of dementia and how to help carers step up to the mark.