I haven’t seen my brother for a few months.  When I arrive at his Nursing Home he is fast asleep in a chair surrounded by his fellow inmates.  As always it is busy around him with staff trying to engage, redirect or restrain his fellow inmates.  There are some new faces and variations in presentation in some of the regulars.

My bro lives in a busy environment and that has to be my starting point.  It seems likely that such an environment is the antithesis of what anyone suffering from dementia needs.  At a time when he needs a calm peaceful environment he is surrounded by ongoing chaos.  I will use fictitious names as I give you a glimpse into the scene as it unfolded.

Wendy is on walkabout: up and down the corridors with anyone who will take her arm.  She is likely to stop at any time en route and take off items of clothing until all is revealed.  Sam is shouting out in a language that no one else can understand – even his own family.  Tom is tying himself up with a length of plastic wire and a member of staff is gently trying to keep him safe.  Donna is wanting someone to help her with her dolly and is out of her chair summoning assistance.  Others are out of others chairs trying to sit where others are already placed.  Four or so members of staff are on the look out and intervene when they see an opportunity to calm things down or keep someone safe.  My bro sleeps on oblivious to his surroundings – we think:  perhaps he just wants to escape from this mayhem.

My sister in law sits adjacent to my bro strokes his hand and talks very quietly.  After a while she leaves him to rest, or escape, a while longer.  She meets a fellow traveller and chats to her about her loved on.  I lean against a window sill watch, and chat, to staff members.  On occasions I exchange the odd word with other inmates.  This is an excellent learning opportunity for the likes of me.

As I sit and watch I see before me professional carers in action.  Most of them are on a long shift.  I wonder how any of them can keep this up?  Then I remember there are no days off for me or colleagues to give me support when I am feeling in need of a break.  Enough of the griping back to my role as an interested observer.  I witness how they use body language and visual expressions to  ease their charges in the right direction.  Language is also carefully chosen and used appropriately.  This is all good stuff and I chat along to help me to check if I am reading it right.  My bro sleeps on as I watch, listen and learn.

My bro may have flickered his eyes as I sat opposite him and spoke very quietly.   It is possible he knew someone was there even his younger bro: we will never know.  There is so much we will never know about this dreadful condition.  I know I would not want to be working in my bro’s Nursing Home.  On first inspection it looks tired; in need of a coat of paint and one or two new items of furniture.  However, to me that has never been the most important issue as I know that my bro is in good hands.  He loves all his ‘nice ladies’ who tend to his every need. Therefore my parting words are always something along the lines of: ‘thanks for looking after him’.  I want them to know I appreciate how hard they work at looking after my bro.

I arrive at my mum’s care home as they open for visitors at 11 am.  She is sitting near to the foyer so I wave and there is no response.  Does she sill remember me I wonder?  As I get closer there are signs of recognition.  Then she says the magic words:’ have you come to take me out?  Even then I am not sure if she is just looking for a ride in the country and any taxi driver will do.

I try my normal ice breaker and tell her she is looking good.  She is well turned out this morning in a matching skirt, blouse and cardigan.  Carers are promptly dispatched to  find her outdoor clothing and we are soon on our way.  Mum has been puzzled by my chatting up a bright young thing who is a new member of staff.  She didn’t spot me checking out how she was with other members of staff.  Rule One here: check out how things have been going and react accordingly.

We settle for a short trip out to a local park.  Mum is very quiet en route and I bite my tongue and listen.  She comments periodically on the number of cars on the road and the weather.  Out of the blue she asks me if I have a dog?  I have no idea what is going on here.  It is possible she is confusing me with my dog owning sister.

Once at the park we go into our normal routine.  Mum loves ice cream and we share a 99: two cornets I hasten to add.  Refreshments  keep things even quieter, apart from mum enquiring about her hand bag.  Things seem much the same as my last visit: cars, missing handbag and very quiet.  Then she asks me out of the blue: ‘have you got a wife?’

I could provide far more detail on trivialities but  from my glimpse of things little has changed.   However, I have not looked behind the scenes or chatted to her carers about how mum is going.  She has probably been in hostess mode for the last hour to show me she is alright.  Why does any mother want to worry her son about anything.  Her role in life has been to look after him and that is not going to change now!

Well I am back with good reason.  I am having a short break and will be visiting family members where dementia is more than the elephant in the room:  it is the building.  During the day I hope to take mum out as she still loves a ride in the car.  Now in her 90’s a little ride in the country is one of life’s remaining pleasures.  I will take her back to her Care Home for lunch with her fellow residents and it is likely that she will forget she has seen her youngest son before sweet is on the table.  There are ‘benefits’  from her dementia:  she has  forgotten how much she misses dad and has no idea of the condition of J her eldest son.   Thank goodness and I will tell you why……………….

A couple of years or so ago I took mum to see J as I thought she wanted to see him.  At the time I thought I had done the right thing.  Now with more understanding of the condition I think it was a naive gesture on my behalf   In fact it may have done more harm than good.  I had no understanding of the points that those who understood the condition better than me were making: she needed to remember him as a little boy.  Her dementia was torment enough I had added to it by showing her J was suffering.

Mum was probably bewildered as she sat holding his hand: pleased that at long last she had found him again  but puzzled by his reaction.  He had no idea who this elderly lady sitting next to him was.  She could have been anyone and certainly not one of the’nice (young) ladies’ that surrounded him on a daily basis.  The irony being that at that stage he often talked about his mum.  In fact prior to his incarceration he often wandered down to visit her several times a week.

He had found his way into a Nursing Home following an experience at a Respite Centre where it was alleged he had attacked a carer.  This had eventually led to the conclusion that his poor wife could cope no longer with him at home.  His Alzheimer’s required  Continuing Health Care, medication so he would accept personal care and 1:1 support.  The only thing J can do for himself now is wander the corridors of his ‘prison’.

It is always good to have a holiday even when you are ‘on the buses’.  The first thing that strikes me on my trip is how hard it is for any of us to deal with dementia.  There is no route on this journey.  Nothing is straightforward as I have said before it is akin to trying to find you way round a maze blindfolded. Dementia surrounds myself and other family members.  We all have our different takes on how the condition is progressing.  When you pop in or take a glimpse  of how things are you may develop a different picture from those who see it 24/7.  I know I had no idea what this journey had been like for my sister in law.  In fact many of us made very harsh judgements  on his behaviour.  It is also possible that some of us criticised her for not making us aware of his deteriorating condition.   However, until you have been there 24/7 over a significant period of time your knowledge of dementia and the impact it has on the carer is academic.

We all make observation during our lives: we sometimes stand on the periphery and shake our heads. The only way anyone can understand dementia is to live it 24/7 and then that is only one experience of the condition. In retrospect when i look back and reflect on how I thought others had got it wrong I shudder with embarrassment.   Taking my mum to see my brother agh……………….

Taking special measures this morning to change the environment and hopefully M’s mindset.  Have just requested the ‘Black Maria’ to park elsewhere.  Our neighbours, as always, have responded well and A’s girlfriend will park further down the road.  This may solve the anxieties associated with the ‘Police Surveillance’ issue.

M is within clutching distance as I type and says she: ‘feels so much better this morning; nearly back to normal’.  Clearly no recollection of the events of the last few hours.  I wonder if she has remembered her early morning aspirations (4.30 am) to go swimming or visit family in the East Midlands.  Hopefully, she will see the prompts on the whiteboard and take out the atlas to plan our route.

Clearly I have to try to move her off the sofa if at all possible.  It’s a bright start to the day: cool for the time of year but a stroll on the Prom beckons.  With luck on my side we might make the Leisure Centre to identify a quiet time for a swim later in the week.  Unfortunately, schools holidays will be a deterrent with lots of noisy kids in the pool.

Pushing things further we might make the train station to enquire about services to the East Midlands.  All of this is a time filler to keep M off the sofa and try to ground her in the present rather than being a constant time traveller.  It’s all worth a go as more of the same is no good for either of us.  Who knows where this may lead  but none of us can predict the future with any certainty.

M mentioned again last night that the police are always monitoring her movements.  She said that the black car outside our house follows her around.  When she walks out on her own, plain clothes police are on every corner to keep an eye on her.  This might sound a little far fetched but it all makes a sort of sense when I look back over the events of the last few months.

On two occasions I have sought police involvement because M has gone missing.  Their initial involvement coincided with her walking back towards our house, after being missing for over an hour. A couple of weeks later they found her several streets away attempting to find her way back home.  So I now think that M believes that the police are always on the look out for her when she is out by herself.

M’s memory is so poor that she does not know her way around here and  has to ask  people how to get back home.  Her vision is limited following stroke and she is virtually blind on her left hand side.  Therefore, there is a very fine line to be drawn between her liberty and safety: it is a matter of judgement.  In my opinion the cost of limiting her liberty is considerable and it is worth taking measured risks by giving her space to wander.

The police have been exceptional in their support to us: prompt and professional.  In some ways I wish they had M under constant surveillance – it would make my life easier.  The only thing I can do at the moment to ease M’s anxieties is ask that neighbour of mine to get his girlfriend to park her ‘Black Maria’  a bit further down the road.  The ‘police’ need to know that I have things under control for most of the time.  They can go off duty now and again and leave us to it.  Then M will not be constantly looking out of the window to see if they are still watching her.  Police surveillance has now gone over the to as far as M is concerned and it is really worrying her.  No wonder she is packing to go home every night: she wants to get away from all this nonsense.  Home of course is a place where dementia played no part in her life!

Don’t doze has to be one of the golden rules for all carers where dementia is the elephant in the room.  Just ‘bobbed off’ as they say round here and paid the price.  Not a a heavy penalty this time but enough to give me a rude awakening out of my complacency or tiredness.

M had been cleaning the pots and plans as I watched T V in the lounge.  I am not sure how long I had been ‘resting my’ eyes: quite some time when you look at the evidence.  I had been having more than ‘five minutes’ if you look at things with your eyes open.

Yes you have probably guessed it by now.  M had been spending some of her time ‘packing to go home’.  The evidence is there for all to see: the washing basket is full of boxes and other things that we couldn’t possibly leave here.  Never mind I thought; she had at least put the washing out as the basket was now full of packing.  Ahhh… it’s pouring with rain and it’s all having a further rinse.  No matter we can spin it again in the morning, so no real harm done.

When  think of it I have got off lightly at least she hadn’t scarpered again.  It seems she knew where I was and hadn’t gone out looking for me.  Then my poor little wife would have been soaked and she doesn’t fit in the washing machine to be spun dry.

We are working on a three shift system here now.  Quite a busy start to the day with my ECG and other checks at our Medical Centre.  It brought home to me the point that Teepa Snow makes the important thing about dementia is capability not loss. M looked after me this morning she became my carer when I felt unwell.  All her maternal capabilities were pulled out of the bag and dementia was left where it belonged.

Because of the unexpected events of this morning I have not looked at the material I downloaded from the Net yesterday. Any chances of rejoining our Ballroom Class this morning has been shelved.   The morning Siesta is underway for M: my short doze is over.  So what can be done that provides cognitive stimulation for M as we lunch together in an hour or so?

Firstly, the ambiance of ‘my restaurant’ has to be compatible with the atmosphere of the occasion.  I am only catering for two today we are not accepting additional bookings.  Once prepared I will act as Maureen’s waiter responding to her every need.  She will comment on today’s creation and we will discuss it’s potential in the market place.   Appropriate music will be played in the background.

Sweet will be taken in the lounge.  We used to call it ‘pudding’ but now we are all middle class something has to change! Dishes may be returned to the kitchen as we decide if it is time for another rest, before we tidy up the debris in the kitchen.  M may assert that she can change role into a domestic and usually comments: ‘we are not going to have so many to lunch next time- this is all too tiring’.  Siesta will follow at the end of the second shift of the day.

I think Teepa would approve of our approach to living with dementia.  We strive to have fun as we go about daily living. What’s wrong with larking about pretending to do market research on the efforts of the ‘In House Signature Chef?’  The food is always good at  ‘Our Journey Restaurant’ and there is always lots of cognitive stimulation on the menu.

Had a funny turn in the kitchen a couple of hours ago.  I thought I was going to pass out and had to sit down for a while until I felt in control of things.  Some palpitations in the chest and funny feelings in the head.  Having read the literature on the toll caring takes it is possible that panic set in.  Just to be on the safe side I phoned the G P and he asked me to go to the Medical Centre immediately for a check up.

An hour later I am back home reassured that there is nothing fundamentally wrong.  My blood pressure and pulse are within acceptable limits.  The ECG showed my normal ‘right bundle branch block’ but no significant changes there.  He thought my ongoing problems with acid reflux or stress were behind my dizzy spell.

We are fortunate that our Medical Centre is so well geared up to supporting us both at this challenging time.  It is possible that my spell as the Voluntary Faciltator to the Anxiety and Depression Support Group has helped things along.   We are well known at the Practice for the right reasons: they know we are a couple who will always say it as it is.  Always ready to complain when things go wrong but equally prepared to compliment for good service.  We both consider ourselves fortunate to be patients at our Medical Centre.  Their support to us on our journey with dementia continues to be exceptional.

I had hoped to make those Workshops with Teepa Snow in London mid August.  Although our Dementia Engagement Project would have been prepared to support my attendance, it is not a good time for me to be away for two days and overnight.  Changes in M’s presentation are taking place and I need to stay close by to provide support. Fortunately, Teepa is very generous: there is lots of helpful stuff available on the Net and my Searching paid off yesterday.

I am fast coming to the conclusion that ‘Packing to Go Home’ is  a time filler when M simply does not know (remember) what to do next.  So she packs things away for something to do: it becomes part of her evening routine.  Often in the morning she stays in bed because she doesn’t know what to do.  I think it’s her short term memory faltering, once again, and rather than being spoiled for choice, like most of us, she is facing a blank canvas.  Well  Teepa may have come to my rescue here with a way forward and a plethora of suggestions:

How Can We Become Better Care Partners?

Be willing to try something new

Be willing to learn something different

Be willing to see it through another’s eyes

Be willing to fail & try again

Teepa suggests it is possible to fill the lives of those with dementia with Joy and Meaning.  There is a PDF File available on the Net FREE to download.  Guess what I will be looking at as the morning progresses.

YES I will share the Link very soon……

From what I have seen Memory Tests are practically a waste of time.  They prove little and in the wrong hands have the potential to do harm.

I have had the misfortune to see several Memory Tests conducted during our journey with dementia.  It is possible they provide a base line of some sort  I would contend many of them are practically worthless.  I will use a couple of examples to make my point.

I recall a Care Coordinator from the Memory Service  testing M’s memory during a home visit.  Her investigations led to a referral to a Consultant.  He repeated a similar test and diagnosed Mild Cognitive Impairment with Vascular Changes.  A similar test was repeated by one of his colleagues, a Specialist Doctor, some months later.  She visited our home a few months later and carried out an ACE 3 test and diagnosed Vascular Dementia.  M’s G P confirmed the other day she has Mixed Dementia, based on an initial test carried out by a Clinical Psychologist from the Stroke Team.

In addition to what can only described as a charade; other people have carried out their version of the memory test on M.  A GP at our Medical Centre carried out his own ‘hotch potch’ test, after the Memory Service had discharged her and said there was no further point in testing.  A G P in Out of Hours at the local hospital asked her how her memory was.  I wonder if a tattoo on her forehead would help: ‘there is no point in further testing’.

Something my sister passed on today has taken the biscuit on the testing front.  One of her friends has told her that staff at a Day Centre have subjected her mother to a spelling test.  You’ve guessed it; her mother has vascular dementia.  Memory testing is like a virus that has the potential to impact on the lives of all those with dementia.  I wonder who we need to vaccinate to stop the virus in its tracks?