I am not sure if I have just broken one of my golden rules: not to share any bad news with Maureen.  It is something I tell all and sundry; to avoid her dwelling on negatives.  I have just taken a risk as this is something she can do something about.  Her Aunty is alone and stressed a few streets away while her husband lies very ill in a hospital bed.

I had thought of not putting Maureen in the picture following a phone call half an hour ago.  Then I reconsidered that as her Aunty is like a sister to her, that she would want to know.  Perhaps sharing bad news that she can do something about is different to just having angst dumped in her lap.  Only time will tell if I have got this one right.  I certainly hope so.

There are lots of aspects of dementia that would be fascinating if the subject matter was not your own wife.  One recurring pattern of behaviour that needs exploration is fears of being left alone; even being abandoned.  At this stage on my learning curve I am interested in speculating on the root of these fears.  I am hoping that a clearer understanding of the condition will help me to make more informed responses to Maureen’s presentation.

It is not unusual for Maureen to wake up in the morning, or after a nap, very agitated because she fears she has been left alone.  As I have mentioned before my early morning wakening means that I have often left the marital bed when the dawn chorus is still underway.   This is nothing new and should be something that Maureen has got used to by now.  So being alone in bed in the morning is normal for her in this household.   It would also not be unusual for me to be pottering about, as she has one of her many naps on the sofa throughout the day.  What is fairly typical is her response when she wakes up.

Generally, Maureen is almost in panic when she wakes after a period of sleep.  Her anxieties take on a number of perspectives.  Primarily, there are fears that she is alone: that we have all gone out and left her to her own devices.  This is typified by something like this: ‘ I wondered where everybody had gone?’  It is rare that she grasps there are just the two of us here.

On other occasions she will wake and be concerned that she is late for something; typically school.  At first I thought this was the school she worked in, then it dawned on me it was her own secondary school.  I only twigged this when she mentioned that her uniform might not be dry.  So I add two and two together and link this with ‘wanting her mum in the morning’: the one person who could help her find the things she needs.

I could speculate forever and never be sure of what is behind any aspect of Maureen’s presentation.  Many have written that ‘time travelling’ take place and those with dementia are unsure of where they are in their life cycle.  Sometimes I wonder if this fear of being alone is an understandable response to how people with dementia are treated following diagnosis.  Being abandoned sums it up as well as anything I can come up with.  Preparing for decline and a slow death are a much harder interpretation of  the normal treatment plan.

So I am left with a 100 Million Dollar Question is this fear of being alone nature, nurture or dementia?  Perhaps we will never know so best try to stay in bed longer and continue to try to come up with lots of ways to minimise distress.

Maureen showed her fears about a man, or men, in her bed again last night.  She went to bed early on and I joined her a couple of hours later after watching T V.  As I slipped into bed beside her she let out an almighty scream and shouted out: ‘Who’s that?’  I tried to reassure who I was and console her as she sobbed for quite some time.  She also mentioned that she had: ‘told them before about strange men trying to get into her bed’.  Having this experience once gain left me shaken and wondering about a number of things.

I am wondering what is the source of these fears; even nightmares? It was something that surfaced during her six weeks in hospital, where she became very anxious about men coming into her room when she was in the Independent Care Facility.  She was clearly constantly anxious about the strange behaviour of some of the male patients in that facility.  Therefore, it is understandable that in a confused state she misread incidents.  On the other hand something may have happened that may add substance to her fears.  There is another puzzling incident that she often refers to when recalling the period following stroke.

Maureen often tells of being shifted from one hospital to another in what she describes as a cattle truck.  There is little doubt that being moved from one hospital to another late at night shook her up. Her behaviour  when she arrived at the receiving hospital was extraordinary, claiming she had been: ‘transported by crooks and none of them were to be trusted’.

I suppose I will never get to the bottom of  these anxieties about men: they will remain for the rest of her life.  It is unlikely if the detail of the cattle truck and the crooks will ever be forthcoming.  What I can do to prevent the screams in the night is to take to the spare bed when my wife has decided on an early night.  Hearing her scream out and sob is no way for either of us to get a decent night’s sleep.

‘Love lies’ are one of the suggested approaches to dealing with dementia.  The strategy, I believe, is based on being economical with the truth to avoid distress.  On most occasions I have found this approach helpful and have got away with the odd ‘porkie’ or two.  It is possible that it would have been less stressful for my wife if I had dodged her question last night.  Unfortunately, I responded to her enquiries about the weekend by reminding her that family members would be visiting in the next couple of days.  This led to all sorts of anxieties and confusion about what lay ahead.

As the evening progressed M continued to probe about the arrangements for today.  She struggled to grasp who is coming and our plans for the visit.  This is nothing new in this as she is far from an ‘entertainer’ and has always almost panicked when visitors are pending.  Questions about when they would be likely to arrive and if they were staying overnight continued alongside where we might eat.  In addition she just couldn’t grasp which of my sisters, and how many of their family, would be visiting.

M woke up with a start this morning worrying if: ‘any of her kids knew where she lived?’.  She suggested that their lack of contact, in any form, might be due to them not knowing where she was.  As she was attempting to come round she had forgotten that her son had phoned last night with plans to visit on Monday.  She spoke to me in the third person unclear of my status.  I think I made appropriate noises rather than add to her confusion and  helped her get back to sleep.

I wouldn’t put money on where she will be this morning as she tries to make sense of her world.  I suppose all i can do is bring her a cup of tea in bed as soon as she needs one.  At least she will see a helpful ‘Tea Boy’ in the morning and it really doesn’t matter who he is.  You can’t be more straightforward than that!

I’m back on my phone call focus with good reason.  My wife’s G P rang this afternoon to ask me to take her in to discuss the fact that her cholesterol level was higher than it had been for a while.   He spent quite some time  explaining the risk factors and the need to go back on statins.  In his normal informal style he did his best to persuade M that she need to add an additional tablet to her daily regime.  He was well aware that he had a job on his hands, as M is reluctant to take tablets unless they are essential.

M seems very disheartened by the news that she needs to take statins.  I think it is difficult for her to grasp the importance of keeping her cholesterol within safe limits.  Like me his explanations may have been too long and complicated.  It was another occasion where KISSS  (Keep It Simple Stupid and Short) would have been applicable.   Even a G P  may find it difficult to change his style when he is trying to communicate with someone who has dementia.   All M can focus on is that she has to take another tablet for life.  She doesn’t seem to understand it is to prevent a further stroke.

The irony is we were just settling down for our afternoon siesta when the phone rang.  Another 5 minutes and the landline would have been disconnected, so we could have had a rest in peace.  No chance of that now and I fear a battle may lay ahead to persuade M to take an additional tablet  this evening.  Those flipping phones if it isn’t PPI: it’s statins.

I decided to get my hair cut this morning and my wife came along for company.  It is a shop run by a group of young women and they are all compassionate towards M.  She found the shop a bit claustrophobic so she went out into their rear garden to sit on  a bench and take the sea air.

E cut my hair today and she asked me how things were going.  It was the first time she had seen M since stroke and she was shocked by the transformation since she had last seen her. I was in the chair for 15 minutes or so and M came in from the garden just as the finishing touches were being applied to my head.  I paid up and we left to make our way to M’s chiropody appointment.

M seemed rather quiet as we walked the short distance to the chiropodist.  On route she suddenly said: ‘tell her not to wear perfume the next time she comes to see you’.  I asked her who she meant and she said; ‘ the black haired one – she said she’s been to our house’.   This puzzled me somewhat as her description was of someone I didn’t know.  However, I took the opportunity of finding out who this figment of her imagination was.

I decided to walk back to collect our car, and call in at the hairdressers, to try to make sense of M’s comments.  Sure enough the young girl who had been keeping an eye on her in the garden had long black hair.  By the look of her she was young enough for me to have been her granddad.  The girls in the shop smiled when I told them of M’s concerns.  Funnily enough they are all aware of M’s problems with hypersensitivity to perfume.  Not that any of them even know where we live but if they were to call they would be unlikely to wear perfume.

It’s puzzling where such suspicions come from but I am hoping that if my wife has an eye out for me in the future she will consider my age.  I don’t think that I would have had a lot in common with the youngster with the long black hair.

This is not the post I had in mind earlier today, it is far more important.  The events of last night are now of far less significance after this morning.  Towards the end of our a shopping expedition my wife said: ‘I hate it’.  She was referring to her experiences in a local Supermarket, where she had been dependent on an assistant for the last half an hour or so.

M has always been fiercely independent and capable: the stroke has robbed her of so much capacity.  No longer can she wander the aisles of the Supermarket at will; her restricted vision alone make that problematic.  When you add in her dementia the difficulties are almost insurmountable.  So as she sat in the changing rooms partially clad a kind shop assistant ferried garments back and forth.  It is uncertain if we have come away with anything that will be suitable but we have left with a feeling of disillusionment.  I did my best to say something appropriate but could have added: ‘I hate it too’.

I hate watching my wife slowly disappear before my own eyes.  She is now a shadow of the woman that left many in awe with her intellect and looks.  Beauty is in the eye of the beholder and she still looks good to me.  However, she is often incapable of rational thought and applying logic to situations.  We have both aged since meeting over 25 years ago but what I hate is seeing my wife a shadow of her former self: stroke has left her incapacitated on so many fronts.

Some say that things will get easier as time passes and my wife will become more compliant: easier to manage.  I am not sure I am looking forward to that stage of the condition, as I will miss the period of lucidity.  We both hate it: dementia has robbed us of so much and watching the condition progress is heartbreaking.

Blogging is part of my therapy; it is a means of preserving my sanity trying to cope with caring for someone who has dementia.  I can’t get to the computer for more than a few minutes at the moment as my every move is being watched and questioned.  This is not a good start to the day and I know it is not my wife’s fault: she is rarely in control of her thoughts and actions.

I hope to be back soon to try to make sense of the events of the last 12 hours or so……………………………….

I have just committed the cardinal sin.  I have reminded my wife that she has dementia by talking of events from a week or more ago.  Not only is she struggling to understand what happened, she cannot accept that she has no recollection of Black Thursday.  I have also forgotten that her memory can falter and have failed to keep to my mantra of KISSS.

On that fateful night we suddenly had three new faces in our living room.  The Rapid Response Team had turned up to try to ease tension in the household  followed by a carer for an overnight sit.  This was a poorly handled approach to giving your truly a night’s respite.

The best laid plans eh …. At 5 pm we had been told that there were no carers available to stay with my wife so I could have a break for the night.  Shortly after 10 we had three additional support staff in the house.

In retrospect I should have let another sleeping dog lie and put Black Thursday down as a bad experience.  It is quite remarkable that I am still to receive any explanation or apology for the distress caused to us both.  Then to put icing on the cake I have mentioned it to M again early this morning.  I won’t share the detail but her incessant questioning about another woman staying in the house over night have been taxing; to put it mildly.  I am hoping that sleep will shift it from her mind otherwise I am in for a rough few days: all of my own making!

When someone has dementia : Keep It Simple Stupid and Short.