Tag Archives: Confusion

Dementia: Care In The Community

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The Home Treatment Team pulled out all the stops yesterday to help manage the ongoing crisis that was developing here.  We were in touch throughout the day and a Mental Health Nurse called at our home for a couple of hours in the morning.

I continue to be impressed by the Home Treatment Team in all sorts of ways.  It always helps when you are being supported by professionals who have a cohesive working model that reflects your own thinking.  They also practice what they preach and soon weighed up that Home Treatment was the best option for us.  That means that they will assess Maureen’s presentation in the home whilst seeking to prevent carer burnout by yours truly.

I am also grateful to Gary, a Duty Social Worker,  who worked tirelessly yeaterday to provide back up to the Home Treatment Team.  He had contingency arrangements in place in case Maureen needed to go into an Assessment Centre.  In addition he put a further carer sit in place and tried to organise more at very short notice.  Sue our Key Worker will be back today, she doesn’t work on Wednesday’s but the arrangements in place for her day off are first class.

We are not out of the woods in any way yet.  Maureen got into a real state yesterday afternoon feeling that the conspiracy to take away her liberty was escalating.  She tried to do another ‘runner’ and broke down later on.  Thankfully telephone advice from the HTT to ‘give her space to see if she would settle’ worked.

I need to talk to the HTT and Social Services this morning to avoid interventions by their staff provoking Maureen into reactions that are unhelpful to her well-being.  I’m sure they will understand the need for staff continuity rather than fresh faces at our door adding to Maureen’s confusion and distress.

I nearly forgot we’ve just had a great night’s sleep, in bed together: what a relief!

 

Dementia: Waiting For Daybreak

General,

We are in crisis Maureen doesn’t know who I am and wants to be taken home.

She is refusing to go to bed while I’m in the house.

She will need to be assessed by the Home Treatment Team in the morning.

It is so sad that I haven’t been listened to and it has come to this.

I am totally exhausted after another sleepless night.

The crisis support during the night has been helpful.

The staff we need now will not be on duty until 8 am.

Dementia: A Day Of Emotional Turmoil

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Yesterday was a very tough day for Maureen.  The early morning proved very difficult for her as she struggled to cope with grief about her daughter.  I didn’t get chance to talk to Chloe before she moved on to her next call but I gather she didn’t have a easy ride here.  On my return from meeting Ed Maureen often looked stunned as she tried to find something to fill her time.  Prior to lunch she wandered around the garden looking lost.

The afternoon and evening didn’t go according to plan as a difficult day progressed.  Maureen was far from her normal self and seemed more unsettled as the day progressed.  She awoke from ‘resting her eyes’ shortly after 9 pm and I guided her towards turning in for the night.  Major upset followed as she prepared for bed with sobbing about ‘wanting to go home’.  Once again she was wondering where ‘the other girls were’ to keep her company in bed.  To reassure her I made it clear that I would be in the ‘boys dorm’ next door.

I’m hoping that rest will lead to positive changes in her presentation tomorrow.  It seems to me a quiet day will be in order with yours truly staying close at hand to provide support when needed.  What an unforgiving, and exhausting, condition dementia is with its relentless demands on this very tired couple.

It looks as though rest has been the cure as we’ve got off to a positive start today: hence this morning’s later posting.  Blogs are not the place to share too much information!

 

Dementia: Meditation Not Medication Version 2

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Meditation design elements vector graphics 01

I don’t need any persuasion of the benefits of meditation.  Some years ago I began to show an interest in Buddhism, and began attending local classes in meditation.  I have had several teachers in my sporadic attendance, they have all  helped me to  grasp the simplicity of Buddhism.

When Jendrik, my current teacher, heard that I was unable to attend classes, because of Maureen’s condition, he popped round to see me.  Ed one of the longest members of the Grimsby Group has also met up for a chat on several occasions: we are getting together again this morning.

The Buddhist message, from both of my dear friends, has been to use this challenging time as an opportunity to address ‘self-cherishing’ and give ‘unconditional love’.  It therefore comes as no surprise to me that Meditation is now being seen as an important component of any strategy to deal with the impact of dementia.

Maureen has always been a little sceptical of Buddhism.  Therefore, I need to tread very carefully if meditation is to become part of both of our lives.  However, I’m optimistic that with patience she will see that meditation will become as beneficial to our lives as music. 

Any reader of this blog would know by now that we are generally reluctant to see medication as a panacea for health issues.  We believe in taking responsibility for our well-being with a healthy diet and exercise.

When we are unwell we look into our symptoms and try to find a solution without troubling our G P.  If natural cures don’t work we seek an appointment and take professional advice on the best way forward.  Even then we might try to sort things out ourselves once our ‘medicine man’ has made a diagnosis and prescribed his solution.

My Admiral Nurse has set me thinking about changes in Maureen’s presentation.  Her point that triggers are behind Maureen’s presentation has resonance with how I see the world.  In short I would put Maureen’s behaviour down to cause and effect: she is frightened about being abandoned and is searching for a life boat as she fears the ship is about to go down.

Working with the Home Treatment Team feels like with are with kindred spirits as we  seek calmer waters: they do not rely on the medical model .  They are aware of research that urges caution with an approach that relies on antidepressants and antipsychotic medication.  There is a strong body of opinion that these types of medication should not be used where dementia is a factor.  Thank goodness we are in that camp and not  fighting a battle to resist the introduction of antidepressants.

On Wednesday the Mental Health Nurse suggested that Maureen needed some help with regaining her confidence.  That has been my opinion for some time and  I do my best on that front day after day.  However, it is possible that a different approach or style could reap further dividends.  How lovely it would be to see Maureen ‘come out’ from behind the sofa and regain the vitality that has gone missing since stroke: with us all singing from the same hymn sheet that is now a distinct possibility.

Chloe our regular carer returns from her holiday today.  Maureen can’t wait to see ‘her hairdresser’ this morning: eagerly anticipating a makeover.  When I come home after seeing Ed at lunch-time I fully expect to see a transformation; with Maureen sitting chatting to Chloe rather than ‘Mrs Dementia’ being in situ.

If all goes to plan a Support Worker from the Home Treatment Team will be here on Sunday morning.  With luck she will persuade Maureen to go on a much needed clothes shopping expedition.  My late afternoon conversation with the HTT yesterday helped me to understand how significant their intervention can become.  How refreshing to have skilled experienced guides to help us find our way on this hazardous journey.

Dementia: Opportunity Knocks With The Home Treatment Team

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I drifted off to sleep in the armchair as I watched television last night.  When I awoke Maureen was standing next to my chair looking completely bemused.  She was carrying a pile of my clothes for the homeward journey.  Once again in her mind we didn’t live here and needed to get home.  As I came round I did my best to calm things down and assure her that it would be easier if we stayed here for the night.

An hour later we settled down to watch football on the television and both fell asleep.  This led to a period of abject confusion with Maureen wanting to get back home to her husband.  It took me a while to persuade her that he would understand her staying here for the night and would pick her up in the morning.

Towards midnight I managed to ease her into the ‘girl’s room’.  She was very frightened about others being able to get into her bed.  She was also wondering if Rachel her niece would be joining her in bed later.  I managed to settle her down with reassurance that I would be next door in the ‘boy’s room, well within earshot if she needed me.  An hour or so later she yelled for her mum as one the blankets was falling off her bed.

The doctor from the Home Treatment Team warned us that these episodes would become more frequent as dementia progressed.  She concluded that Maureen’s presentation was manageable at the moment without the need for additional medication.  What is in question is my ability to be able to provide appropriate responses when the going gets tough.  Last night I drew heavily on the strategy that Karen a Mental Health Nurse used on Saturday evening when Maureen was in full flow.

We now have a window of opportunity: a couple of months where we can use the expertise of the Home Treatment Team.  They will provide whatever support we need as we seek the best way forward on the next stage of this unforgiving journey.  I will contact them this morning to suggest that their intervention begins over the weekend with some direct involvement from their personnel.  They have the expertise to support me to develop a life of my own alongside being a Care Partner who knows how to minimise distress when the going gets tough.

 

Dementia: Twelve Hours To Go

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I started thinking about this blog half an hour ago: exactly 12 hours before a Specialist Doctor will be here for a home visit.  The last time she was here she conducted an ACE-111 Test , diagnosed mixed dementia, and discharged Maureen from the Memory Service. Over a year later she is wearing a different hat working for the Home Treatment Team.

We had a lovely day together yesterday despite the  late arrival of the carer.  I have registered my concerns about that matter and they will be resolved within formal processes.  What happened yesterday was symptomatic of general problems within the Care Agency and need to be resolved in the interest of clients.

Yesterday morning when the carer arrived  I popped out to buy some basic requirements.  Maureen seemed to accept my need to go out but my reception when I returned with my haul was far from warm.  It was the familiar ‘why are you leaving me with carers while you go out?’  I have asked the social worker to explore these feelings of desertion with Maureen when she makes a home visit on Thursday.

When we went to bed at 8.30 last night I  got the cold shoulder once again.  We had been having another lovely musical evening singing along to vinyl for a couple of hours.  Once upstairs I set myself up in our bed while Maureen continued with her night-time routine.  When she returned from the bathroom she posed ‘where do the girls sleep’ and went on to make it clear that there needed to be separate sleeping quarters.

I need to return here to my  Admiral Nurse’s assertion about triggers in the behaviour of someone who has dementia.   It is not surprising that Maureen resents me leaving her with carers: her life-line is deserting her.  She also knows that husbands are not always faithful when they are out of sight, from bitter personal experience and our affair.

The separate sleeping arrangements have three possible triggers.  Firstly, it is something she grew up with. Her dad had epilepsy and her mum was frightened of his lack of control if he had a fit in the night, so they slept in separate rooms.   Then she has experienced domestic violence in her first marriage with continual fears about what might happen to her when her husband returned from the pub.  She also heard groups of men in the Independent Care Facility speculating on the prospect of being able to tell confused ladies they were their husbands and join them in bed.  Little wonder that she often wants a bedroom to herself and keeps the door firmly closed

All of the above is speculation and if I have not found the triggers they are there somewhere.  Something is behind significant changes in Maureen’s presentation:  it is reassuring that the Home Treatment Team will not put it all down to the progression of dementia.

As I finish this post I think I’d better see how Maureen is as I haven’t heard a sound from her for ten hours.  I hope I’m able to open her bedroom door without frightening her.  Thank goodness for that she is sleeping peacefully.  I need to sort out that monitor as soon as possible so I can hear what is going on when she is in another room.

Dementia: Time Travelling On An Endless Hours Contract

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I have always found the Time Machine by H G Wells a fascinating film but I never thought I would ever have such an experience.  Teepa Snow and others have highlighted how easily those with dementia move effortlessly back and forth in their life experiences.  In the last few weeks Maureen has clearly struggled to work out which Paul I am and that is quite understandable.

She talked to me the other day about the ‘cheeky monkey’ who used to borrow her car because his wife had his.  I’m expecting her to mention that he also used to dump his young children next to her desk while he popped upstairs to get some photocopying done.  Little wonder that she is often puzzled who I am: I’ve moved from being a work colleague to being her husband with a lot going on in between.  One of our neighbours was dumfounded on Saturday when Maureen told her she was ‘going to call the police because she was being kept prisoner here by a man who claimed to be her husband’.

It is also no surprise that Maureen doesn’t believe that she lives in Cleethorpes.  She can remember going back home to Nottingham when she was a child.  A move that caused upset between her parents and separation from the extended family that she loved.

Time travelling is not restricted to Maureen:  I have now moved back into familiar territory of working split shifts.  As a community education worker I worked a mixed pattern of mornings, afternoons and evenings.  No two weeks or days were the same and I often slept on a morning or afternoon off.  The only difference now is that as a Care Partner there is not an employer or a trade union to help me address this endless hours contract and secure the support we need.

I took a chance last night and got away with it.  I went to bed exhausted at 9.30 pm and left Maureen on the sofa downstairs as she refused to go to bed..  I awoke around midnight and saw that she was fast asleep.  Three hours later I found her very confused and cold; wondering where the children were.  This scenario needs to be avoided and I have a number of ideas to discuss with support staff on that front.

I am optimistic that the involvement of the Home Treatment Team will help us on two fronts.  Firstly, to develop a strategy that eases Maureen’s levels of fear, distress and confusion. Secondly, to sharpen the focus on the type of support package that will ensure our ongoing well-being.

 

Dementia: Superb Support

General,

We received exceptional support from every quarter yesterday.  In our hour of need local services and family support was of the highest order.  There may also have been other forces on our side as we have both had a peaceful night’s rest.

I could write a book on the events of yesterday.  Blogs are not the place to share such personal detail:  they are the place to praise ‘Care in the Community’ at its’s best.  The powers that be in this area deserve praise for their arrangements to support families in their own homes.  Professional staff from many services provided excellent support throughout the day and evening yesterday.  When we are in calmer waters I will register out thanks for the support they provided.

I am also grateful for the ongoing support and advice we receive via this blog.   It is really helpful that people in a similar position to us are sharing their stories and expertise.  Unfortunately, there will not be time in our lives to visit you all in far flung places around the world but you never know.  I just want you to know that your messages of support make such a difference when the chips are down.  I’m sorry I will not be able to respond to your messages today as I need to focus on securing the home base.

We are not out of the woods just yet.  It is decision time this morning.  I agreed to ‘tough it out’ last night rather than involvement in late night procedures that would have led to Maureen being placed in an Assessment Centre.  My gut feeling is to wait another 24 hours until a Specialist Doctor will make a home visit to discuss the most appropriate way forward.  It always helps when you know and trust the person concerned

Thank you all for your support.   We would not be coping at this challenging time without your superb support.

 

 

Dementia:From Bad to Worse

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Mental Health Nurse now who is under tremendous pressure to calm things down  This is not looking good.  An Assessment Centre may be the best option but needs Maureen’s consent.

Thanks for your support.

Dementia: Willie Nelson To The Rescue

General,

I seem to have grounded Maureen for now. We have Wille Nelson to thank for that as she asked me to print out the words of ‘No Mas Amor’ and that has been a turning point this morning:

She is now happily watching YouTube while we wait for the arrival of a  Nurse Practitioner to establish if infection is behind her current presentation.

Thanks for all messages of support.

Update 10.45 am: Rapid Response nurses just arrived.