I think it is interesting that M returned to packing to go home again last night.  Once again the washing basket is full of boxes and special things that you wouldn’t want to leave here if it was your holiday home.  I am speculating as always but I think packing was resumed in response to the events of the afternoon.

I did my best to handle the flood episode according to the ‘book of dementia’.  So adopting a no blame culture ‘I went with the flow’: if you’ll pardon the pun  I even managed to keep a smile on my face as I took off one sodden garment after another, as the clean up progressed.  Until that moment when I needed another pair of hands and things went wrong: even more water ended up on the floor.  I think it is fair to say at that stage things got a little heated and we both made unhelpful comments.  No matter a simple hug put the matter right a short while afterwards: actions speak louder than words.

So why the packing I ponder?  Then it appears to fit into place.  During the flood M felt impotent.  She had necessitated emergency measures and witnessed her old man on his hands and knees for quite some time.  Water, water, everywhere and she knew she had caused it but didn’t know how.  She couldn’t fathom how to help and when she did try to assist that white headed old miserable B**** shouted at her.  Little wonder that she wants to pack to go home.  Why would she want to stay here?

Packing to go home is a routine where M feels in control.  When she is packing she hopes it is something that will help her escape from the nightmare of DEMENTIA and that miserable old B**** who lives here.

My wife has just failed the Flood Test.  I arrived in the kitchen to find her trying to stem the tide.  The kitchen floor was awash with soapy water.  It flowed on as the cold tap was fully open.  My wife had no idea what was going on.

Once I took remedial action she had no idea how to help with the clear up.  She struggled to follow my instructions and help with baling out.  She wandered from kitchen to garden in a fruitless effort to assist in the drying up operation.

If a professional member of staff had visited our house to assess her capacity this afternoon she would have hoodwinked them with her intellect and ability to talk a good game.  My wife remains and articulate woman:  when she is lucid her intellect is intact.  It is when she has to function that her decline is apparent.  To fool family she reverts to the ‘hostess mode’ and pulls out all the stops to convince them there is nothing wrong.  After family visits she often sleeps for a couple of days to allow her brain to recover from her herculean efforts.

Only those who are here 24/7 get a true picture of her decline.  This afternoon has even been a wake up call for me.  If I am to keep her safe I need to review popping out to the shops occasionally.  If I continue to leave her alone our water bills could become rather expensive.  Water water everywhere: I might not get off so lightly next time.  There might be a lot more to worry about than baling out for half an hour or so the next time.

It usually takes M a couple of days to recover from a period of intense activity.  Friday and Saturday, along with the preceding evening were certainly that.  It would be fair to say that she was zonked by an intense period of activity here; with lots of anxiety.  Thinking on Thursday that she was: ‘going to lose her home’.  Things became so bad on Saturday she told me that: ‘if this is what old age is like I don’t want any more of it’.  There is no need for further details but surrounded by strange faces in your own home you could easily think you are in a Care Home and she did!

M is coming round now and was up in time for breakfast for the first time since Saturday.  Medication is now back on schedule.  Those who know say that with both dementia and stroke the brain takes time to recover and sleep is the only remedy.  The maxim is : ‘to let sleeping dogs lie’.  Well ‘wuff wuff’ she will be guard dog of the oven chips while I go for the fish in a minute.  Great that she is back in the land of living again.

One important piece of advice I may have misunderstood in the early part of out journey with dementia was: ‘accepting the new reality’.  Perhaps things could have been made a little clearer at our first appointment at The Memory Clinic. Hearing that your wife has ; Mild Cognitive Impairment with Vascular Changes is confusing.  To add having to ‘accept a new reality’ is more than most men can take mid afternoon.

Over a year on our journey with dementia I think our guides could have been a little clearer in their direction.  They could have suggested that I need to understand my wife’s reality.  I got a poignant reminder on that  yesterday.  Our regular carer is back from honeymoon. Like a daughter to us that one, and she told me that my wife thought I was fed up with her.  My speedy exit when carers arrive makes my wife feel that i can’t wait to get away.  Such feelings will have been compounded by events over the weekend: ‘he has gone away because he is exhausted’.

Imagine if you can this scenario……..

You have had a stroke; dementia has followed and confusion is frequently rife.  Lots of people have been arriving at your house who are all new faces.  They discuss how things are going: reflect on your diagnosis and how you are behaving.  Your husband says he needs a break and is very tired.  During the flurry of activity over Thursday and Friday things go wrong you drop off whenever the coast is clear.  You get the idea they are going to: ‘turn you out of your house’.

Your husband seems irritable with the ‘new kids on the block’.  Sometimes he makes it clear he is fed up with their prevarication.  Eventually, he heads off south to see his own family .  You are left with people you have never met.  New faces turn up at will: they appear to be consumed with writing things down and are frequently on the telephone.  When you are in bed alone you think ‘if this is old age I don’t want any more of it – being in this Care Home stinks’.   I could go on ……………….

If you are just a little bit confused by the above events then it is not surprising you question the motivation of your husband: that is your reality.  With the chaos of the last few days it is not surprising that my wife thinks i can’t wait to escape from her.  My priority in the next week or so is to show her how much she means to me and she is my number one priority.  As the famous guy said: Action Speaks Louder Than Words.

Watch this space.

Dementia is H G Wells stuff: Time Travelling with the machine out of control.  There are no levers to press or dials to observe to see where the Time Traveller is and that makes life problematic for others on a journey with dementia.  So when my wife wakes up this morning and asks about ‘the others’ or ‘the children’? I am not sure where she is in her life cycle.  On many occasions I get it wrong and assume she means her children, when she means mine.  At others I am way off beam as she means grandchildren.  So I reflect this morning on if it is possible to ground her in the present?

I have already removed surplus dining room chairs to confirm that we live here alone.  This may help to establish this is our house rather than a temporary residence: even a Care Home.  Some photos already act as reminders that we are married.  As I go through the day I will ponder on what further visual prompts I can add to help my wife remember where she is.

I have made two changes to our household set up today that can only reduce confusion.

As my wife has wandered off on a couple of occasions an additional  alarm system has been fitted to the front door.  This meant that eventually a call came in asking if we were safe, and well, whenever the front door was opened.  This system added to my wife’s confusion, as she could never fathom how it worked.  I have now spoken to the company concerned and temporarily disabled the system.  We still have a ‘bleep’ from the front door as part of our own alarm system.

On many occasions I have been puzzled by my wife setting additional places at the tables.  She often asks how many are eating at meal times?  So today I have removed two of our dining chairs.  This could help to end confusion and confirm that there are only two of us likely to be present at meal times.

 This is  KISSS in action: ‘Keeping It Simple Stupid and Short’.

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We are looking at dementia from the wrong perspective.  Applying the medical model to dementia is totally unhelpful.  This leads to a personal deficit approach to the sufferer: a concentration on what they can’t do.  If we look in another direction we might just focus on what they can do.  That is the view we need to take of those who sufferer the indignity of dementia.  We don’t want to saddle them with the shortcomings of the medical model. Once again I will use personal experience to substantiate my point.

Caring for someone with dementia 24/7 can be exhausting and I had reached a position where I need respite.  I have been raising concerns about changes in my wife’s presentation for the last month or so..  In plain English further deterioration, or a dip in her functional capacity, had become clear .  Respite is difficult to achieve and I had to pull a few strings to get things moving.  No need to give detail here but I had to play ‘hard ball’ to get my own way.  I got my day and night off but my poor wife is still reeling from my time away.

I accept that my antics made it difficult to arrange ‘familiar faces’ in the house.  However, I am beginning to see that some sectors of professional staff have no real understanding of dementia.  They wanted to use my respite as a period of observation to see how my wife is.  She wanted to stay in the comfort of her own home and blankly refused to go to an Assessment Centre.  Questions have to be immediately asked at this juncture what would have been the point in observing my wife in strange surrounding?  It gets worse than that.

If we switch to my wife’s reality here: the only focus for anyone who is attempting to support someone with dementia. She has seen a succession of new faces in her own home who have told her that: ‘I have gone away because I am exhausted’.  Can you imagine what might pass through the mind of someone with dementia?  Have her charges not heard of ‘Compassionate Communication’ or ‘Love Lies’.  Why didn’t they tell her I had gone to see my mum?  This would have been the truth and accepted by my confused wife.  I could go on at length about my poor wife’s appalling experience during my absence it would fill several pages.  My point is that we appear to be surrounded by people who simply don’t understand the condition and they make things worse for all concerned.  Something needs to be done to stop this charade.  My wife often says : ‘they think I’m mad’  I now feel tempted to reply: ‘you are not but they are’.

One of the biggest problems with dementia is that it is often treated under the umbrella of Mental Health.  In my view this is a serious mistake as dementia is not a mental health issue it is the result of brain damage.   The dangers of this misplacement are that dementia is then caught up in the medical model which is totally inappropriate for the condition. Once again I will use the experience of M to make my point.

I have already alluded to issues around diagnosis opinions differ on whether M has vascular dementia or mixed dementia.  On the one hand it matters little and diagnosis is not simple as even an autopsy is not definitive.  With vascular there is no treatment with mixed there is.  Reports on the efficacy of treatment are unhelpful and side effects are an issue.  Currently we are in the camp where medication for the condition has no approval from NICE but dangers lurk from the association with Mental Health.

We have already had the ‘Thought Police’ from the Memory service grill M about ‘mood’.  The problem here that the T P are working with an outdated model.  They appear to be stuck in a time warp of ‘chemical imbalance’ impacting on mood.  For some reason they have failed to grasp that NICE have changed their guidelines on the treatment of mild to moderate depression because they have accepted that chemical imbalance cannot explain mild forms of mental illness.

The irony for me in all this: the research that disproved chemical imbalance took place at Hull University.  I know that the toll on the Humber Bridge is expensive and Irving Kirsch is now at Harvard.  But for goodness sake my friends in NAVIGO the Libraries are still open and it’s all on the Net and YouTube.

When you are on duty 24/7 as a carer with someone who has dementia you get to know their needs.  My wife dislikes using the telephone as she can’t find anything to talk about.  Sometimes I disconnect the land line to save her further anxiety and stress.   I discourage family from making calls and sometimes tell a ‘porkie’ on her behalf; saying she is asleep when calls come in for her.

She is now on her third call of the evening.  Her latest  call has been going on for over half an hour.  Well it is birthday and she is talking to her sister.

I have just realised I may be short changing readers of this Blog.  Apart from yesterday I have been concentrating on my role as a carer for my wife.  As my Ma has Vascular Dementia and my Bro has Alzheimer’s disease  there is an opportunity to add another perspective to my blog.  I am also able to give a perspective on what it is like in to pop into a situation where dementia is the Elephant in the Room.

Sorry about that I will put that right from now on.  Tired carers on duty 24/7 can”t see the wood from the trees on some days.  The suddenly a clearing appears……………………….