It’s 3.40 am and I’m paying for a mistake I made last night.  Shortly after ten I took up a kind offer from Maureen’s youngest son to contact him when she is adamant she doesn’t live here and I’m not her husband. The phone call had an immediate impact with Maureen going to bed but it has backfired this morning with a bitter vitriolic attack about the type of person I am.

This morning has been a stark reminder to accept Maureen’s reality: last night’s remedy was ill conceived and naive.    From now on if she wants to remain on the sofa and wait for ‘her husband to take her home’ that’s fine.  The Baby Monitor will be on and I will take to the spare bedroom on red alert in case she wakes in a confused state and panic sets in.  I have to let Maureen sleep wherever she wants and try to find a way of getting rest myself.  The solution to all of this is adjusting to Maureen’s presentation and accepting her reality.

I made a second foray into looking at Care Homes yesterday. The place I visited was certainly preferable to the one I saw the day before but was a stark reminder of what lies ahead.  I became rather sad in the afternoon that dementia has robbed us of a long and happy life.  

An Email from a very dear school friend gave me a sense of perspective this morning.  Pete passed on very sad news that his son had been killed in a motor bike accident.  I know that Pete and Dot’s faith will carry them through at this difficult time in their life.  My thoughts are with them in Brisbane today as they cope with their son’s memorial service.  All I have to contend with this morning is another day when ‘Mrs Dementia’ may surface for some of the time but I still have the luxury of Maureen being beside me when dementia is not calling the shots.

Maureen woke again at 5 am requesting her first cup of tea of the day.  She is now happily tucked up on the sofa.  I hope I can have the courage not to challenge her reality again!

I was really pleased last night when Maureen used a four letter word I had told her to yell out whenever she needed help.  When I heard her shout ‘PAUL’ at the top of her voice I knew I had to get downstairs as quickly as possible.  She had woken yet again from sleeping on the sofa frightened that she had been left alone in the house.  Thankfully one of my ideas to reduce distress had worked: I have been working on another this morning.

Maureen woke at 4 am this morning and went downstairs to make a cup of tea.  She returned empty handed with hair brushed but no tea.  When I went downstairs a little later the kettle was filled but had not been switched on.  I’m not sure if she has forgotten how to make tea or that she wanted a drink. I soon put matters right and made a cup of tea that has warmed Maureen up and allowed her to go back to sleep.  As I have had 7 hours or so in bed I have decided to find some missing items and make one or two changes around the house.

The bolt has already been taken off the door of the utility room; the one of the bathroom is a little more obstinate.  It will be off shortly and prevent another episode of ‘Oh dear what can the matter be’: Friday’s episode of Maureen being locked in you know where.  With Maureen’s presentation changing so rapidly it’s difficult to keep on top of what needs to be done to maintain her independence yet keep her safe.  How ironic that someone who has always been averse to using profanities is now happily using four letter words.

There are often times when Maureen doesn’t know who I am: apparently there are now several Paul’s in her life.  What I hope is that when she shouts for ‘PAUL’ he helps her to to feel found as conveyed in this poem:

into dementia An insight

I think I’m here but I’m not

My route to the facts are all blocked

Places don’t sound right

And people don’t sound right

And I don’t sound right

And what is the answer, the ‘right’?

My mind is all twisted around

Then suddenly, from the fog, you appear

And straighten it out from the weird

The answer? For now, I AM found

Poem courtesy  of Terri at Academy of NHS Fabulous Stuff.

Our Care Agency came up trumps yesterday when I was feeling unwell by arranging an additional sit at short notice.  I’m not sure I would have coped if Chloe hadn’t been here to take Maureen out for a walk and give me a break from my caring role.

My predicament yesterday gave me a sharp reminder of our vulnerability in an emergency: with family at least 100 miles or more away.  It would be silly to put off looking at Care Homes that offer respite any longer.  Apparently it’s never too late to be a Boy Scout and I need to be prepared and know somewhere suitable for Maureen to go when respite is needed. I might not have time on my side the next time so my research begins this morning

Jennifer Tucker one of my fellow bloggers pointed out that today is Anzac Day.   Her moving Blog has reminded me how grateful I am for two Australians’ who helped to keep my dad safe as he served as a Tail Gunner in a 186 Squadron Lancaster Bomber Crew.  Sadly Johnny Gibb his Wireless Operator, from Melbourne, died in a flying accident shortly after the war.  His Skipper Eric Barton, from Sydney, came to England and met up with dad in the 90’s.  There was a Leader Article about Eric in an Australian newspaper in May 2015.   I tried to contact him through the newspaper a few years ago and failed.  How lovely it would be if this Blog gave me contact with him or his family.

My dad is third from the left in the photo below and Eric is to his right.

Jennifer has also posted a moving musical tribute to Anzacs which I have posted to my good music page as I forgot to update it on Friday after rather an eventful day.

I think my dad was looking down on me as I drafted this post: trying to keep us safe as he always did.  The streaming cold that has been troubling me for the last 24 hours has eased and Maureen has decided that it is time to come to bed, rather than remain on the sofa.  Hopefully we can all sleep safely in our beds as we could all those years ago thanks to all those who served alongside the Anzacs.

I have just woken up to finish this post after more refreshing sleep.  It’s much easier to rest when Maureen is tucked up safely in bed.  I’ve just remembered that my dad’s log book from the RAF remains in my desk drawer along with press cuttings and comments on the raids he went on.  I really must call in at the RAF Club and take advice on whether they would like these artefacts in their museum or they would be better placed closer to his base in Stradishall.

Despite a thorough search I couldn’t find a bunch of my household keys yesterday . Therefore  I got up very early this morning determined to find them and realised that I also had misplaced a replacement set.  My first thought was that Maureen had stashed them away somewhere after being ‘locked in’ on Friday.

I searched high and low for about half an hour.  Then Maureen joined me and unearthed the replacement set under a cushion in our bedroom.  Just as I was about to give up I turned over a cushion in the dining room and found the missing keys.  I just wonder if you know who had put them there so she had an escape route if she found herself locked in again.  The strange thing is Maureen made only made a passing reference to her ordeal on Friday by suggesting that I wanted to ‘lock her in the garage in the dark’.  She hasn’t remarked on several keep sakes that are no longer on the dining room table: I doubt she will see their remains in the dustbin.

I can’t risk Maureen being needlessly scared out of her wits again by locking her in and being out of sight.  If I can’t prise her off the sofa I need to remain by her side or stay awake with the baby alarm close at hand.  It’s just too risky to let her go off wandering alone any longer as her road awareness is suspect.

I caught her as she slipped out of the back gate yesterday and gently ushered back into the warmth of the house.  Just to be on the safe side I will ask Occupational Therapy to do a capacity assessment on her road safety awareness to see if there is any way of her independence being preserved.

Now I wonder where that wife of mine has hidden that missing address book.

I am not sure there are many people who would say that they feel fortunate to have had depressive episodes in their life:  particularly, when the last one, four and a half years ago, led to being Sectioned and incarcerated in a Mental Health Unit.  However, I can genuinely say I am glad I have had such an experience along with a diagnosis of ‘a chemical imbalance needing medication for the rest of my life’.

Things have to become pretty bad when you have suicidal thoughts that you act upon. Taking 90 paracetamol is pretty drastic action and you need to be lucky to get away without any long term consequences: that is down to the prompt action of Maureen.  I  was also fortunate the side effects of the prescribed solution ‘mirtazapine’ made me feel worse.  That encouraged me to think about what had happened and where my suicidal feelings had come from.  This morning I have an appointment with Paul Martin who helped me to put my depressive episodes into perspective.

Paul along with many others sees depression as a response to environment.  He helped me to see that it was my environment that was the problem: not a chemical imbalance.  His thinking is supported by the likes of Irving Kirsch and Peter Kinderman .  In fact Irving has proved that antidepressants are little better than a placebo for treating mild to moderate depression.  Peter has argued long and hard for a new way of treating depression; with talking therapy the solution rather than medication.

My appointment with Paul this morning could not have come at a better time; as once again my environment has the capacity to impact upon my mental well-being.  The pressures of being a Care Partner are well documented: they are life shortening. Yesterday Maureen articulated once again her disappointment about being left with carers while I went out on my own.  Maureen’s reactions are par for the course as empathy goes out of the window with dementia progresses.  If I respond to her feelings of desertion I compromise plans to help me develop a life of my own.  I could easily put off returning to   Buddhist Meditation Classes tonight or even delay my long awaited day trip to see family in Coventry on Monday.

It is fortunate that Paul’s initial training was as a Mental Health Nurse often working with patients diagnosed with dementia..  He understands my dilemma of attempting to have a life of my own alongside being a Care Partner for someone who lacks any semblance of empathy..  None of this is anything to get depressed about: the issue is once again is how to respond to challenges in my environment.

One of my initial conversations with Paul this morning will be about sleep, as I’m really struggling to drop off when I’ve been woken in the night.  Maureen was up and about three times last night. Getting back to sleep after easing her distress is becoming increasingly difficult.  As always Paul will have something up his sleeve to help me on this front.  I just hope his solutions bring to an end sleep deprivation and consequent exhaustion: I’m well aware of the dangers if my sleep deficit continues.

I’m also aware that dementia and lack of empathy go hand in hand.  Pandering to Maureen’s fears of desertion will not help: they are part and parcel of the condition.

In one of my latter professional posts with Coventry City Council my Line Manager often outlined our ‘Working Position’ to a specific issues.  Maureen’s presentation has changed considerably during the last few weeks and to use Bill Malley’s approach our ‘Working Position’ is outlined below:

• From today we will have 18 hours of carer sits a week.
• Maureen does not have the capacity to determine her care needs
• Additional sits will be organised to allow me to visit family in Coventry on the 25th of April.
• I will not encourage Maureen to move outside her comfort zone.
• Our priority is to avoid agitation and keep Maureen calm.
• I will encourage family to visit as often as possible but to come in small numbers.
• I will discourage Maureen from going out on her own and trail her if she tries to wander off.
• I will attempt to get Maureen to carry the GPS Tracker whenever we go out.
• I will get a Sound and Movement Monitor tomorrow for those occasions when Maureen chooses to sleep downstairs.
• The Home Treatment Team will remain on standby: available to be utilised whenever needed.
• Lorazepam is only to be offered when all else fails and Maureen remains agitated.

We are fortunate to have been  be supported by professional staff who have moved very quickly to review our Care Plan.  Maureen has been treated with respect and compassion throughout a period of mental health assessment: staff have concentrated on the person rather than the condition.

It is not possible to note all the acts of kindness that have been shown towards us in the last few days but I want to share some memorable moments.  Firstly, Natalie a Mental Health Nurse worked tirelessly to build up solid rapport with an agitated Maureen: including listening to Maeve on YouTube.  Her emotional  reaction to Songbird and others meant so much to Maureen.  Then Dr Kokton was the epitome of warmth and sincerity: at one stage she sat on the floor as she engaged Maureen on challenging matters concerning her mental state.  Sue our social worker was a model of empathy yesterday: at one time holding Maureen’s hand as she reassured her that it didn’t matter if she had forgotten events when she had been behaving out of character.  I could go on and apologies to all the staff I have failed to mention who have been working on the front-line or in the background during this challenging period in our lives.  When things are more settled I will record my thanks for the excellent support we continue to receive from staff within NAVIGO ( Mental Health) and Social Services.

N.B. I may well post more later as Maureen woke at 3 am this morning.