Category Archives: General

Dementia: Prison Breakout

General

All that talk about parole yesterday went completely out of the window.  Maureen decided that she could wait no longer and about 10 am nipped off while the coast was clear.  I came downstairs from posting the second blog of the day to find that she was nowhere in sight.   Just to put my money where my mouth was, I resisted going to find her,  hoping  she would make it back here under her own steam.

I caught sight of her, out of our lounge window, about 45 minutes later walking away from our house. Like all good husbands I hot-footed it to the front door yelled: ‘hey Blondie’ and she turned around to return home. When I asked if she had been far she said: ‘I don’t know, I hadn’t got the pedometer on’.  As you can imagine I was reassured to see her and felt justified in my action: she had made it back home under her own steam.

Her absence had given me a chance to have a chat with our social worker for half an hour or so.   It had been helpful that I had been able to talk about recent developments openly, without fear of offending Maureen.  Once again I was reassured that we were now being supported by someone who understood dementia.  After welcoming the new arrival by making drinks, I popped out for a short while to give Sue a chance to chat with Maureen.

I managed to have a brief chat with Sue before she left, and she confirmed that Maureen: ‘still has some capacity’.  In her view we are at a challenging stage as dementia progresses; with Maureen accepting that she needs some support but wanting to preserve a level of independence.  Our plans for my next away, a week on Saturday, day are an attempt to strike the balance with Maureen having some time to herself, along with carers supporting her at key times of the day.  Neither of us are supporters of the camp that believes constant supervision is the best way forward at this moment in time.

Footnote:  We didn’t make it to the Leisure Centre yesterday.  An early morning walk and an hour with a social worker is enough for anyone who is recovering from stroke.  It’s not surprising that Maureen slept for most of the afternoon: ‘fed up with these people who keep coming to your house to ask questions.’

Dementia: Opportunity Knocks for Parole and A Reality Check

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Opportunity knocks on two fronts today.  Firstly, there is an opportunity for Maureen to go on parole: a day off from her prison.  Secondly, Sue our social worker is calling and has an opportunity for a reality check on Maureen’s presentation.

Parole

There is a real opportunity for Maureen to sample some parole today and the beauty is the prisoner has suggested how it mught happen.  In response to me waking up at 3 am this morning with pain in my legs Maureen enquired if the Leisure Centre could be a solution.  She wondered if Fitness Instructors could come up with an exercise programme to strengthen my week muscles?  She also added that she wished she had taken up their offer of help with the problems she is having with her left leg.  All of this was music to my ears.Clipart - parole papers. Fotosearch - Search Clip Art, Illustration Murals, Drawings and Vector EPS Graphics Images

The door is now open for parole of some form today: several of opportunities for Maureen to have a day outside the nick.  It really doesn’t matter which of the three options she takes up – she’ll get away from it all in one way or another.  If she chooses to come along she can either join in or go for a walk along the prom.  The latter is familar territory as she has strolled to the Pier and beyond previously when I have been exercising in the swimming pool.   Even if she stays at home while I’m away for an hour or so she is moving on from being baby sat.

Life beyon diagnosis certainly has it’s twists and turns but you must never look a gift horse in the mouth.  Who would have anticipated that leg pain would open the way for the prisoner to have a bit of parole?

Reality Check

Sue our social worker is calling this morning, as part of her ‘getting to know us plan’.  This will be her second visit since we have become part of her caseload.  I am thinking of leaving her to it, so that she can see how Maureen is at 10.30 in the morning.  The only way for professional staff to understand Maureen’s presentation is to experience it first hand.

Getting to know Maureen by chatting to her on the sofa has its merits.  Such know-how needs to be placed alongside seeing her in action throughout the day. There is an opportunity for Sue to see her as she comes round in the morning today – although sod’s law she has been up much earlier than usual today.  However,  I wouldn’t underestimate Maureen’s ability to turn on the ‘hostess mode’ at any time of day.  I understand she pulled out all the stops on Sunday morning, and turned it on for her son as soon as he arrived.  Nevertheless, seeing Maureen in the morning will add to Sue’s perspective on the situation here.

Dementia: BOGOF with the NHS

General

I realise I am very fortunate with the level of support I get in my role as a Care Partner for Maureen.  Today is equivalent to a BOGOF with a NHS appointment.  What’s he on about now you might ask?  Well ‘hold your horses’: I’m going to tell.

This morning I have an appointment with the therapist at our Medical Centre.  I see Paul every 6 weeks or so following depressive episodes a few years ago.  I have mentioned on several occasions how Paul has taught me to think my way out of depression.  The BOGOF comes in because Paul initial training was as a Mental Health Nurse and he spent the early part of his professional life work on a dementia ward in a hospital.

Paul has a radical approach to mental health and how to supported a loved one with dementia.  His simple message to Care Partners is: ‘seek to minimise distress’.

Then health risks associated with being a Care Partner are well documented.  I am very fortunate that I have the opportunity to discuss my well-being with someone who understands dementia from a theoretical and practical perspective: BOGOF indeed!

Dementia: Choosing The Right Moment

General

There was an interesting news item on Monday about a school that had decided to shift lessons for 6th Formers to the afternoon.  Teachers asserted that is was counterproductive to get 16 year olds out of bed in the morning, as they needed lots of sleep.  Staff and pupils both commented on the benefits of switching to lessons in the afternoon.  There are issues about timing to be faced as Maureen adapts to life after her stroke.  

The brain injury that Maureen has sustained  has disrupted her cognitive functioning.   It now takes her far more energy to process information and function effectively. You only have to see her in action to almost hear her thinking before she acts.  Her exhaustion is evidenced by the need to take regular naps.  If she goes into ‘hostess mode’ she can keep going for longer but it then takes a couple of days to recover.  Following her exertions over the weekend Maureen is now in recovery mode: needing far more sleep than normal.

It would be foolish to push anything until Maureen gets her breath back after her cover up exercise on Sunday.  At the moment she is pottering around the house, and we have ventured out for short periods of time.

I declined to push her to choose new glasses yesterday.  It would have been unwise to encourage her to make choices: not something that comes easy following stroke.  So the mission at the moment is to keep things nice and easy and minimise distress.   We did manage a late evening stroll to the convenience store and I pointed out one or two landmarks in passing.  Maureen befriended a dog of a neighbour on our stroll – something I will return to later in the week.

If the escape from Maureen’s  prison is going to be  successful  it has to be well conceived.   It will only work if the route is well planned – otherwise she is in for a life sentence.   We made a start in that direction yesterday.   However, any attempted breakout at the moment would be doomed to failure: she just hasn’t got the energy to ‘go on the run’.

Dementia: Prison Escape Plan

General

Today’s Motto: Three posts a day keeps Prescribed Disengagement  at Bay!

I want to try to address Maureen’s feelings about being a prisoner.  There appears to be a simple way forward and I have a ‘cunning plan’.

I am going to encourage Maureen to make trips to the local shops.  This will involve her learning the route to a local convenience store and bringing back a bottle of milk.   It will take me a while to help her build up the confidence to ‘go it alone’, and it will be very interesting to see how we go about this exploration of her ability to learn.

We may well start today with a simple walk together to the shop.  There is only one way to approach this task: ‘slowly slowly catchee monkey’.  I will keep you posted on how my plan to support Maureen’s escape from her bonds progresses.

Dementia: Myopic Mayhem

General,

It’s really surprising after one day off from being a Care Partner how difficult it has been to get back into the swing of things.  After a day of mixing with people in control of their thinking, and reasoning, it has not been easy to cope with  someone who does not always have the luxury of such qualities.  A trip to the opticians yesterday afternoon put the issue into focus – if you will pardon the pun.

We have not been able to find Maureen’s spectacles for a couple of weeks.  We have hunted high and low for them without success.  Last week we missed an appointment with the opticians and were fortunate to be able to retook for yesterday afternoon. Things went well as I managed to get us to Specsavers more or less on time, and testing took place on schedule.

Following Maureen’s test the optician called me over and explained an old pair of glasses of hers that I had found  were varifocals and needed to be thrown away. They were promptly despatched into the charity box, and we went on our way. The test had worn Maureen out, so she decided to leave  choosing new glasses until another time.

When we got home Maureen complained that she was feeling dizzy without her spectacles on.  She claimed that she normally wore her distance glasses, and doubted that they had been missing for a couple of weeks.  In retrospect it was probably a mistake to let the optician dispose of the old varifocals, as this may have added to Maureen’s confusion.

One thing for sure we have an answer to Maureen’s dilemma of not knowing how she is going to spend her day.  On most days she simply can’t remember how she used to fill her time.  Well we’ve got a starter for today:  either find her old glasses, or choose some new ones.  One problem solved but I’m sure others may arise as the day unfolds.

Postscript:  We went to bed together at 9.30 pm last night.   I have been up since around 6 am this morning.  Maureen is convinced I didn’t sleep in the same bed her as last night.  Her eyesight is obviously worse than I thought!

Dementai: Dealing With The Fallout

General,

After my day in London yesterday was a bit like coming home after a holiday: things had changed.  I had to tidy up a little and return one or two things to their normal places.  Maureen’s presentation had also changed; she was quiet and exhausted.   The puzzling thing was that she didn’t mention anything about Sunday and made no reference to her son’s visit.

I am not surprised Maureen was tired.  She will have been in ‘hostess mode’ all day: attempting  to show her recovery from stroke is well underway.  What requires some speculation is why she has not spoken about how she spent her day or asked me about mine.

I would guess that she has dealt with Sunday in the way that she continues to deal with bad experiences.  Her experience of being dumped at a Day Centre is typical of her approach to life: she has never spoken of it again.  So why would she mention Sunday when all it held was disappointment?  What she experienced was disruption in her usual routines; with none of the luxuries of a normal Sunday.  Therefore, it is not surprising that she has not mentioned a day with poor substitutes on the food front, and a lack of the company of her loving husband.  Maureen has spent a life-time burying bad news, and her brain is hard wired to deal with disappointment in that way.

My reading on neuroplasicity, whilst in transit to, and from, London, gives me room for optimism in all of this.  Brains can rewire: the circuits are not in place forever.  In addition there are many who suggest that the protocol of  Prescribed Disengagement is ill conceived and unhelpful to those with a diagnosis of dementia.

It might have  been Monday yesterday but Sunday Roast was administered.  This chef will only ever offer a menu to Maureen that involves Living Beyond Dementia.

Dementia: The Obstacle Is Not Just A Lack Of Money

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It dawned on me the other day what drives the approach to dementia: it’s a resources led model.  It has taken me a while to try to make sense of what has happened to Maureen following stroke:  it’s predominantly a lack of resources that is pushing us down a road to nowhere.  It is financial expediency not any theoretical model that is driving the approach to dementia in this country.  A couple of statements from medical practitioners help to put the flesh on the bones of this rather stark assertion.

I recall a conversation with a G P’s, a couple of years ago, who asserted something along the lines of ‘we are trying to keep people alive beyong their sell by date’.  This may appear to be a cynical view but at a time of austerity, she is at the forefront of rationing dwindling resources.  Then we are told by the Clinical Psychologist from the Stroke Team that Maureen is being referred to the Memory Service because they have more resources to deal with dementia that her department.  A few months later Maureen is cast adrift by the Memory Service with a diagnosis of Vascular Dementia.  Then matters get worse as the protocol for treating dementia is Prescribed Disengagement (Swaffer): preparing for the end of your life.

My struggle in accepting this approach to dementia isn’t just that my wife is being placed on the scrap heap, and left to find her way to activities in the community.  It’s with a biomedical model from a mental health persective.  Yet dementia is brain injury!

If you are viewed as someone recovering from stroke then neuroplasticity features in any dialogue about treatment plans.  No wonder those in the Memory Service are frightened to use the term  DEMENTIA.   They know that once that dementia is the diagnosis you are sent out into the community to fend for yourself.  Once outside the system you are on your own: looking for somewehere to find something to your taste.  However, it is unlikely that NEUROPLASTICITY will be paramount in the minds of those kind folk in the community who are only trying to help.

Dementia: ‘I Feel Like A Prisoner’

General,

I am posting earlier this morning as I will be leaving for London in an hour.

It is a sobering experience listening to your wife telling you that: ‘she feels like a prisoner in her own home’.  Yesterday morning Maureen was at pains to explain to me how she felt: ‘locked in and no longer able to come and go as she pleased’. I fully accept her feelings on this matter and am trying to address her concerns in a number of ways.vector illustration of a female convict behind bars....... bars are contained in clipping mask - stock vector

My intial response has been to explain the caution that has been applied to her recovery from stroke.  How we have all been very concerned to minimise risks, as she moved from feeling her way around, to finding her way around.  I also admitted that my anxious behavior had not always helped: panicking and calling the police on a couple of occasions has been a little over the top. Later in the day I tried another approach to attempt to help ‘the prisoner relinquish her bonds’.

Have to break off from posting this blog as I can hear shouts from upstairs.  Thankfully all is well but Maureen has been dreaming that she is being chased by an Alsatian.  I may not have mentioned before that she is frightened of dogs, as she remembers one attacking her mum when she was a small child.  So back to the prisoner issue ……

As the sun was shining yesterday afternoon I suggested that Maureen might go out for a while by herself.  I said I would leave her to go off for a while by herself.  I reassured her that if I thought she had been gone for too long I would come and find her.  For whatever reason she decided that she didn’t want to go out at that particular time.

I know that some of my colleagues on Talking Point will shake their heads at my approach to Maureen’s concerns.  I can fully understand their response to what might be seen as a reckless approach to Maureen’s welfare.  However , I would contend that my proposal is the next logical step in Maureen’s recovery from stroke.  She clearly needs to see that ‘my money is where my mouth is’.  I cannot keep saying: ‘she is making an incredible recovery from stroke’ and keep the chains in place.  Every day, and in every way, I have to keep repeating my message that she is not ill she is recovering from stroke.  Prescribed Disengagement will never be the way forward in this household.

Dementia: Social Workers Rule OK !

General

I am posting much earlier this morning as I will be leaving for London in a couple of hours.

Any reader of this blog will have noticed that I have not spared my words when I have felt that social workers have got things wrong.  However this morning’s post is to heap praise on three social workers.

Firstly, Sue our new social worker has made it possible for me to have today in London visiting my daughter. Secondly, two social workers in Coventry have sorted out the mess my brother has been in.  My sister in law now reports that John is being bathed on a daily basis and in her words ‘looks lovely’.  It is such a relief for myself and Jean that we now have social workers who are being supportive.

I have just had to break  from this posting this blog as I have just heard something that has gone bump in the night, wel 4.45 am.  Maureen has slipped on the floor of the bedroom and thankfully no damage done.  She has just asked me: ‘if she needs to get up now to help me to do anything’.  I have taken her the requested drink of water and encouraged her to take more rest.  There is no point in remniding her I am leaving for London in a few hours as it is likely to cause distress, and prevent her from sleeping.

I am really looking forward to seeing Anna as it is a while since we had any quality time together.  The last time she visited us we were consumed with meeting Maureen’s needs,and hardly had any time to catch up.  When you have four children it is something of a luxury to get to know how things are going for one of them.  Like all my children Anna is a lovely person, and her honesty is commendable.  So I am really looking forward to a forthright exchange on all sorts of issues.

Today is something I have been working on for a long time.  It has been frustrating that it has taken so long to establish a pattern of respite that enables me to be more than a Care Partner to Maureen.  I have had several frank exchanges on Talking Point about my aspirations to be Man rather than Martyr.  But just as: ‘once you have met one person with dementia: you have met one person with dementia’.  It is equally true to say when you have met one Care Partner you have met one Care Partner.  We all have to find our own way of dealing with dementia!