Dementia: A Rude Awakening

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It’s 5 am in the morning and I have been awake for an hour.  The events of the last hour have set my mind racing, and sleep is impossible.  Perhaps this ‘rude awkening’ was meant to be: it has clarified my thinking over next weekend.

Maureen returned from a bathroom break feeling cold.  She put the light on to recover a blanket that had slipped off the bed.  Then she left the bedroom, and everything went quiet until I heard her call my name. I found her downstairs, in the dark, saying that she was: ‘lost and couldn’t find her way back to bed’.  As often happens she is now fast asleep, and I am left awake with my thoughts.

This morning is a stark reminder of her presentation.  One constant is the unpredictable nature of her mixed dementia. On occasions  Maureen can present being in complete control of her faculties.  At other times she is overtaken with abject confusion, and ensuing distress.  It is therefore not safe to leave her to her own devices for anything other than very short periods of time.

My rude awkening confirms what is needed for next weekend, when I will be visting relatives: round the clock care in our home.  Anything else would be nothing short of a negligent approach to her welfare.

Dementia: Anosognosia and hiraeth

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Anosognia and hiraeth  two extremely important words in any attempt to understand Maureen’s presentation.  They are recent acqusitions to my vocabulary, and would certainly warrant a challenge in any game of scrabble.

Anosognosia defines a reluctance to accept a medical diagnosis.

Hiraeth  explains ‘wanting to go home syndrome’.      

I see little point in encouraging Maureen to accept that she has dementia.  I can fully understand how she wants to go with: ‘I lost my memory once and it was frightening’.

Following our trip back to Nottingham, Maureen’s home town, one destination has been ruled out as a better place to live. It is possible that the same job will need to be done on Coventry.

What is going to happen next on our journey with dementia?  I have to confess I have no idea where we will be going.  It doesn’t worry me in the slightest when you have a Champions League Winner in your midst it doesn’t really matter.  All I need to concentrate on  to adulterate a Strictly Come Dancing  phrase is to: Keep Listening

Dementia: Champions League Winner!

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Maureen’s achievenment in making it to Nottingham, is equivalent to her beloved Reds winning the Champions League. What better way to celebrate her winning performance than a picture of her alongside a replica of the trophy taken during our visit to the City Ground yesterday . I had already awarded her a Platinum Medal for her performance in the early rounds of our trip south.  Now there is further adulation for her outstanding performance during our vist to the East Midlands.

Her achievement is remarkable when you consider she had so little preparation for the trip south.  Following stroke, eighteen months, ago she has not felt able to venture much further than Immingham, and that was for a visit to the Memory Clinic.  She has found travelling in the car very tiring; possibly on account of her 50% loss of peripheral vision.  Also her energy levels have fluctuated so much that on ‘duvet days’  she is hardly able to make it out of the bedroom.

Maureen opened the door to a trip to Nottingham by her comments on Wednesday morning.  She told me that she felt so much better that she wondered if she could go to see some members of her family in Nottingham.  I suggested that we could perhaps make it a day out or even an overnight stay.  Shortly after noon we were on our way.  The journey was far from straightforward, as I missed a turning and extended our journey time by half an hour.

As soon as we arrived at her brother’s I knew we were onto a winner.  When Barrie and Maureen get together their closeness is lovely to see.  I couldn’t recognise my wife from the tired, and listless woman, that often bases herself on the sofa.  In fact,I had to cajole her to go to bed well beyond our normal time for retiring.  The next day she was much the same enjoying visiting her old haunts.

I am not ‘spinning’ here to avoid the complications of the trip south.  On occasions it was painful to watch Maureen in new surroundings: she struggled all the time we were at her brother’s to find her way around his bungalow  What I am dwelling on is Maureen’s herculean effort to ‘hang on in there’ and make the best of our visit to Nottingham.  That is why she has her award: she deserves it.

When she phoned her brother to thank him for his hospitality, the emotion in her voice was palpable.  I suspect this is because she may have thought she would never see Notingham again.  It is possible that she may well prefer to stay local from now on.   As I have said before I do not consider my role is to encourage her out of her comfort zone.  She certainly doesn’t need to go chasing around the country to please others.   We are quite capable of  developing all the cognitive stimulation she needs here in Cuddly Cleethorpes.  To quote from the words of the Sky Blue Song: ‘while we sing together we will never lose’.  Did I ever mention my team is Coventry City ?  ‘Come on you Reds’; indeed!

Dementia: Stop Talking: Start Listening

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It is time for us all to change the way we interact with Maureen. We need to become listeners, rather than talkers, so the we can begin to understand her reality, and provide appropriate responses to her needs. This is going to present a significant challenge to yours truly.   Having found a listener I now need to  become one myself: no simple task for someone who is often seeking an audience for his take on life.

Maureen has been in bed for over 12 hours now: totally wiped out by the last couple of days.  I would anitcipate she is likely to be asleep for a while longer yet.  I am hoping that we will be able to limp back to Cleethorpes this afternoon. The trip to Nottingham has been a revelation. It has helped me to increase my understanding of Maureen’s reality and capacity.  I could write volumes on what I have heard, and seen, but I am opting to summarise with bullet points:

  • Maureen has struggled to find her way around a small bungalow.

  • She is anxious about saying or doing the wrong thing.

  • Nottingham brings back many painful memories.

  • Her nurturing nature remains intact: she would like to help her sister.

  • She prefers Cleethorpes to Nottingham.

  • It would be unkind, and unfair, to try to travel further south.

  • Maureen’s confusion about: time, person and place is becoming greater.

  • Staying in other people’s homes is no longer a sensible option: it is too disruptive on their routines.

Several people have helped to cajole Maureen to venture beyond Cleethorpes. I am unclear in whose interest our efforts have really been. It is no longer my opinion that encouraging Maureen outside her comfort zone is the way forward. I have no idea what it is like to have dementia or live with dementia. My perspective is only gained from living with someone who has dementia.

I am absolutely certain that the most appropriate response to Maureen’s presentation, at this moment in time, is to continue to seek to minimise distress. This will not be a simple task; as it has to involve attempting to inform others of what might be needed at any moment in time. Such efforts may not increase my standing in the popularity stakes.  I hope others will accept that being with Maureen 24/7 and listening to her, as dementia marches relentlessly on, gives me a perspective that is worth considering.

Dementia: A Refreshing Approach To Respite

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Any perusal of the literature about dementia would identify the need for Care Partners’ to secure arrangements for adequate respite.  The general view is that time off from being on call 24/7 is vital to avoid care burn out.  I want to argue that such an approach to respite is indicative of something Kate Swaffer calls Prescribed Disengagement.  It is also an approach that does not sit easily within our attempt to revert to our normal life following Maureen’s stroke.

A few weeks after Maureen came out of hospital I went on holiday with two of my daughters.  Because of proximity to stroke Maureen could not have taken up her place on the trip. Maureen’s family came to the rescue and stayed with her, while the three of us enjoyed a week on the Algarve.

I made a tactical error a couple of months ago and Maureen got the message that she had tired me out.  I lost the plot completely and said : ‘I needed to get away because I was tired’.  When I look back I don’t know what I was thinking of to convey such a message to someone with dementia.  What better than to convey to your wife that she had become such a heavy burden that you needed a break before you could resume your caring role.  In my defence I would want to argue that tiredness interferes with pragmatic thinking!  A morse constructive line might have been: ‘we could both do with a holiday’.

We are still in Nottingham staying with family.  What better place to take respite than Maureen’s birth place.  Who better to stay with than her brother and his wife.  So we lodge in a familiar place where Maureen knows she is loved and understood.  That understanding comes from Dianne and Barrie experiencing dementia within their own family.  They regaled us with stories of Dianne’s mums presentation for years.

I am not arguing that married couples should behave like siameses twins: joined at the hip until they are separated by the Grim Reaper.  Having separate interest is the glue that supports many a married couple.  What I am asserting is that the general approach to respite is counterproductive in our case at this point in time: we need to foster opportunities like this one for us both to find opportunities for respite breaks.  Now I face a dilemma on this front in ten days time.

I need to visit Coventry and London very shortly.  It would not be sensible for Maureen to accompany me on the whole tour.  What I need to attempt is a set of words that does not portray the need to escape from carer burnout but some time out to see my own family.  The real sticking point will be dementia can lead to all sorts of complications in thinking and I need to be very skillful in my presentation of my trip.  If my time out is seen as desertion or elevating the status of my own family then I am in for a rough ride.  Such discussion are made problematic when rational thought and logic are dominant when dementia takes hold.  Wish me luck with the discussions that are essential in the next few days.

Dementia: Unearthing Another Little Gem

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Exceptional news to report: after 18 months we have ventured outside Lincolnshire.  We have made it to Nottingham, to visit Maureen’s brother and his wife.  Maureen is over the moon that she has at last travelled any distance after such a long time.  This is a significant achievement – team work has paid off at long last.

Tracey, our social worker, helped to pave the way on Tuesday. As Batman she helped,alongside Robin, set the wheels in motion.  Gale then followed up by playing a blinder; to almost push Maureen into our car shortly after noon yesterday.  Her contributions was immense, as she helped me to nurse Maureen along yesterday morning.

Gale has been along to our house on a couple of occasions. Her performance yesterday was outstanding.  As soon as she arrived she warmed to the theme of cajoling Maureen to go on a day trip to Nottingham.  She played her part exactly to the script: listening to Maureen’s tales of all sorts of things; whilst gently nudging her to make the journey south.

Gale’s compassion, understanding of dementia and ability to make appropriate interventions helped me to see we had another gem on our hands.  I took immediate action and contacted the Agency to request that Gale becomes our ‘Girl Wednesday’.  I left Michelle.at the Agency, in no doubt that this was far more than a request, when she replied that she would ‘do her best’ to accommodate my ‘demands’.

I have no idea how today will go.  It is possible that Maureen will need to ‘Sleep for England’ for a couple of days.  On the other hand we might be able to continue our travels a little further South.  It’s all a question of taking a ‘rain check’ with the umbrella of common sense in hand,  Whatever happens: Gold Medals are awarded to Tracey and Gale.  Platinum of course for Maureen.

Dementia: ‘Help: I Need My Admiral Nurse’

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It’s 4.30 in the morning and I would defy anyone to sleep after the conversation I have just had with my wife. Wait a minute I need to correct that to: after listening to Maureen for the last half an hour or so. To put things into context we are in Nottingham staying with her brother and his wife. It is one of those occasions when as soon athe clock struck nine I would be ringing Heather my Admiral Nurse to get her take on things. Unfortunately,Heather has left, and Mel her replacement doesn’t start until Monday. So my contingency plan is to talk to Evonna as soon as we are back on home turf. If it’s her day off from pharmacy duties at Lloyds, then I will just have to ruminate on matters a while longer.

I will deal with how we made it to Nottingham later in the day, after spilling out the detail of Maureen’s reality. After lying in bed listening I now have a grasp of Maureen’s world: a fascinating insight into her thoughts. It goes something like this:

Maureen lives in a Care Home in Cleethorpes. She suspects they will keep her there until the money runs out. There is this carer called Paul who is really helpful to her. It was embarrassing at first as he sorted out her washing, and solved the shortage of underwear. She thinks he may be gay but he is very helpful.

Some lady carers come in to look after her. They are very kind, and sometimes give her a shower. She isn’t really keen on this type of personal care but she is getting used to it. She feels sorry for them as some of their male clients are cheeky. Some of them follow in their mum’s footsteps to go into caring work.

She feels she can now look after herself. As she has been discharged from hospital she hopes to be able to go home soon. She is often really fed up and has little in common with the rest of the residents in the Care Home. She often stays in bed as there is no-one she wants to talk to and has nothing to do most of the time.

I am sure I have missed out bits of Maureen’s monologue. This is a very different presentation from the listener that Maureen is. It is a fascinating insight into Maureen’s reality. It has reassured me that she feels I (Paul) am doing my best to look after her.

How selfish of Heather to be on the point of emigrating.  Hey girl if you are reading this; one final musical number for you, Dolly of course: Just When I Needed You Most .

Evonna I hope you are there on Friday when we return to the ‘Care Home’. If not I know that Mel will be itching to ‘get out the blocks’ on Monday; so may as well help her to get into the old routine.

How lucky I am to have mentors so readily available. Some people laughed when we said we were moving to Cleethorpes!

Dementia: The Dynamic Duo

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I would want to commend our social worker on the way she handled her visit yesterday.  She contacted us in the morning and agreed to call after lunch.  The prospect of her visit led to considerable anxiety on Maureen’s behalf.  She thought that her liberty was at risk, and the social worker was aiming to put her in a Care Home.

I spent a large part of the morning assuring Maureen that we would be remaining together, in our own home.  However, she kept going back to Tracey’s last visit; where she thought attempts were being made to ‘catch her out’.  She kept returning to the theme of ‘being frightened’ and the social worker’s need to explore this issue.  Maureen said : ‘I think she was trying to see if I was frightened of you’.

It soon became clear that no matter what I said Maureen was ‘frightened’ by the prospect of our visitor at 2.30 in the afternoon.  I alerted the social worker in a brief E mail that I would try to phone her; about the risks associated with her visiting without an update on Maureen’s presentation.  Unfortunately, I couldn’t get to the phone to have a brief chat about things.  As a further attempt to cool things down I suggested a walk to get some sea air.

I deliberately elongated the walk,  to minimise thinking time once we returned home.  We were still eating omlette and chips when Tracey arrived.  My hosting role as ‘tea boy’ gave me an opportunity to ‘warn Tracey off’.  It’s amazing what you can communicate while taking a drinks order.  A nod, thumbs up, and a wink from Tracey was all that was needed.

Any video recording of what followed would have made a few bob as a training aid.  Tracey did the business in a sensitive way by taking a ‘rain check’ on things.   Bat Man and Robin couldn’t have done things any better by reassuring Maureen how well she is doing.   The issue my weekend away never surfaced. It’s amazing what a tea boy and a social worker can come up with in a few minutes together.

I am not sure if we are Pussy-Footing Around around, yet again, or working with Maureen’s mantra of: ‘slowly slowly catchee monkey’?  However, as a Trade Union Official once said to me: ‘Never mind the posturing: it’s outcomes that really matter’.

Dementia: ‘You Are Not Ill – You Are Recovering From Stroke’

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In the early days of blogging I mentioned the reluctance of our Memory Service to use the term dementia.  It appears that their preference of Memory Issues is more than political correctness.  They would argue that ‘dementia’ strikes fear into people; once they are given the diagnosis in such stark terms.

Maureen has had added complications in her diagnoses.  She came away from the Memory Clinic with an initial diagnosis of Mild Cognitive Impairment, with Vascular Changes.  Neither of us had heard of MCI before and were relieved when Care Co-ordinators from the memory service informed us that the likelihood of dementia occurring was unlikely.  From my reading their explanation of the statistics is completely innacurate.  This matters little now as one of their colleagues, who conducted further testing, diagnosed vascular dementia.  Again this is at odds with the Psychologist from the Stroke Team, who, had previously taken me to one side and explained that Maureen had mixed dementia.

There is no doubt that there is consensus on Maureen having dementia.  The type is academic, and matters little. Fortunately, Evonna, our local chemist suggested a way forward on this matter.  She suggested a positive way forward with a mantra of: ‘Maureen is not ill she is recovering from stroke’.

Evonna, and her staff, at our local Branch of Lloyds have provided excellent support to us over the years.  Since Maureen’s stroke, their contribution has been significant at a number of levels.  However, I have to single out Evonna for her knowledge of dementia and her words of wisdom: ‘You are not ill you are revcovering from stroke’ is a positive platform for Maureen on her journey with dementia.  It is honest, and completely free of political correctness.

NB:  A further Post will follow later this morning.  After yesterday’s, very supportive, visit from our social worker  I have to work out if I am the one who is now Pussy-Footing around!  More later……….

Dementia: Musical Memories

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Last night I did something that I have been thinking about for some time: took out our record player and put on some vinyl.  The response was remarkable in all sorts of ways.  I opened up with a Shirley Bassey L P and Maureen became our in house ‘Songbird’.  A title we have bestowed on Maeve, one of our grandchildren, for her efforts on YouTube.

Our dining room became a music studio for an hour or so, and opened up so many new paths on this journey.  We had such a lovely time last night, and yes we sneaked in a dance or two, that it’s going to be a fixed feast for a while.  So first of all playing records will be a pleasant time filler as the nights draw in.  Then there are so many things we can build in around our music sessions.  With the right music the scene is set to move on the rumba  front: strictly in time to the right music.  Yet there is far more to come than dancing, following our chat early this morning.

Maureen decided that she needed a cuppa at 2,30 this morning.  She popped downstairs and returned shortly afterwards upset that no-one else was around.  Just to repay her kindness in waking me up; an hour later I opened the debate on the way forward with vinyl.

We have come up with lots of things we can do in the evening with background music on.  First of all we need to sort out our record collection, to remind ouselves of the depth of music on hand.  Several wild ideas are on the cards including seeking an old fashioned radiogram, to remind Maureen of her ‘mispent youth’.  So it’s going to be ‘Music While You Work’ once gain for Maureen –  our in house version of: ‘Reminiscing Therapy’ or ‘Singing For The Brain’.  It’s DIY once again for us, as Maureen simply does not want to go along to activities sponsored by the local Memory Service.