Dementia: Waiting For A Bed

Mixed Dementia

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Maureen is waiting for a bed on the Konar Suite – a specialist unit for dementia.  Consultants have decided to review her diagnosis and monitor her presentation.  They are hoping a bed might become available before the weekend.

The above news came late afternoon, so when Maureen finally lay on the sofa I took the opportunity of taking rest.  I slept on and off until 10 ‘o’clock, an hour before a night-sitter arrived for her eight-hour shift.  When she rang our doorbell I was pleased to see a familiar face who had helped us out on a previous occasion.

Night sits will become a permanent feature of our Care Plan – I have listened to our Key Worker at last!.  We have decided to start with Wednesday’s and move on from there.

At 4 am I was woken by a deafening scream from downstairs: Maureen was scared to find a stranger in the house.  It took a while to settle things down and reassure her she was in safe hands.

Following an early morning conversation with the Konar Suite, I have agreed to monitor how much food and drink Maureen is having.  She has only sipped her first drink of the day after under-consuming yesterday.

I feel rejuvenated this morning following more sleep than I have had for weeks.  I’m also reassured that a complete appraisal of Maureen’s condition is imminent.  Once again, I’m very grateful for the services that are available in North East Lincolnshire – the Konar Suite is a rare commodity.

 

Dementia: I Did It Roy!

Mixed Dementia,

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In his Newsletter yesterday Roy Lilley encouraged us all to say thank you to nurses.

There are four nurses who I have already thanked for their support in the last 24 hours:

Firstly, a Practice Nurse at Clee Medical Centre who confirmed I had a viral infection.

Secondly, a Nurse from the Konar Suite who gave me advice during the day on how to manage Maureen’s presentation.

Thirdly, my Admiral Nurse who has been nominated as my first line of contact. on all matters.

Finally, another Nurse and a Support Worker from the Konar Suite who made a home visit in the early hours and have provided ongoing coaching via telephone.

It is reassuring that I have nurses available for support 24/7 to enable me to continue to care for Maureen at home.  Unfortunately, despite lorazepam, it has been another sleepless night and I’m rather tired.

I have been assured that Maureen will be assessed this morning.  She appears to lack any semblance of cognition: struggling to understand basic interactions.  The times when she doesn’t recognise who I am are becoming more frequent.  She is currently chattering to imaginary family members and young children about events that have some resonance.

 I’m extremely concerned and wonder what will be the next steps on this journey?

Dementia: Diagnosis Needed

Mixed Dementia, ,

Posted at 4 am:

 

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Maureen needs to be seen by her GP this morning after another dreadful night.

She had just laid down on the sofa after ‘being on a boat’ for the last five hours.

She is awake now: looking for her mum and frightened about being left on her own

I am asking the GP’s advice on how to manage her current presentation.

I am also formally requesting a review of her diagnosis .

Is her dementia predominantly vascular, Alzheimer’s or something else?

A Best Interest Meeting in a month’s time is no help to me in the middle of the night.

We also both need to know if our coughs and colds are anything more sinister!

Dementia: Good News Week

Mixed Dementia, , ,

Image result for Good News Week PictureTwo really good things happened last week.  Firstly, our longest serving carer had a little girl: we understand mother and child are well.  Secondly, her replacement managed to wash Maureen’s hair and give her a full body wash.  It looks like the ‘new kid on the block’ is now Maureen’s hairdresser.  Consequently, I have withdrawn from today’s Teepa Snow Webinar on Bathing Issues as personal care needs to be in the safe hands of ‘the ladies’.  My focus needs to be on the completion of our renovations and securing adequate coaching.

The  good news for the forthcoming week is that our decorator will be on site today and a joiner later in the week.  I would estimate that we are still a couple of weeks away from completion; with further plumbing and electrical work pending.

There is still uncertainty over the coaching I’m legitimately entitled to as Maureen’s Care Partner and whether Maureen should have a Care Coordinator.  Clarification on these issues may not take place until the Best Interest Meeting on the 3rd of November.   In the mean time my Admiral Nurse is doing her best to fill in the gaps in available support.

Maureen is still struglling with her upper underwear and trying all sorts of permutations for support.  I’m hoping that Girl Monday will be able to help her with this today and she will gain some respite from the attendant distress.  I summoned help on that front last night but by the time night carers arrived Maureen had dropped off.

We had another ‘visitor’ during the early hours when Maureen believed her mum was  beside her on the sofa.  She seemed to gain great comfort from believing her mum was close at hand: some hallucinations have a positive impact!

There is some bad news this morning: my infection is not letting up; my nose is dripping like a tap,  I have a persistent cough along with discomfort in my chest, and my legs feel like jelly.  I have already messaged our Key Worker that additional support may be needed if I am to keep Maureen safe and sound over the next few days.

 

Dementia: Controlling Our Mind

Mixed Dementia

I share Buddhist teachings on Sunday’s.

The following lesson seems particularly relevant to Care Partners:

 

Maureen struggled with her clothing yesterday; particularly her underwear.  She kept hoisting her trousers up towards her bust and at one time tried a belt for even higher  support,  I’m hoping Girl Sunday might be able to give some helpful direction when she arrives at noon.

Despite a diagnosis of severe dementia there are times when Maureen’s intelligence and intellect shine through.  I had to smile when I put Strictly Come Dancing on last night when Maureen said: ‘the ladies are making fools of themselves by revealing so much flesh and the dancing isn’t much good either’.  This was my cue to switch over to YouTube to spend another evening watching our current favourite in action!

Dementia: ‘You’ll Never Walk Alone’

Mixed Dementia,

There is no doubt who is the musician of the week.

We have called up Andre on YouTube on most evenings .

Maureen waves at the screen and applauds every number.

‘You’ll Never Walk Alone’ is my approach to our journey:

 

Dementia: CHC Is The Answer!

Mixed Dementia,

Image result for Continuing Health Care is the Answer Picture

If ever I needed it the evidence that Maureen needed CHC  it was before my very eyes and ears in bucket fulls yesterday.  In the morning the singing and laughter from Maureen and Girl Thursday Morning almost drowned out the noise from our plumbers.  I went out in the afternoon and  Girl Thursday Afternoon told me ‘we’ve been singing and baking’ – I sampled the fairy cakes as soon as I got the chance.

My brother is on Continuing Health Care in a Nursing Home: supposedly one to one support to meet his needs.  He is well cared for and it is clear there is lots of TLC on offer for ‘Our Kid’.  He lives in a busy place where the demands on carers consistently outstrip their ability to meet the needs of the residents.

Maureen is on what I would call Continuing Home Care.  Her visits to Care Homes have not gone well and the care has hardly been person-centred.  This is no cricism – how on earth could they get to know her when she is only with them for a short while?  How could anyone expect carers to prioritise the occasional visitor when their regulars provide their bread and butter?

The building work to make this Care Home fit for purpose is slowly drawing to a close.  Three months is a long time for anyone to have workmen on site.  It isn’t surprising that Maureen hasn’t occasionally wanted to run away from being ‘upside down’ as they say around here.  There have been times when I have doubted the wisdom of living in turmoil; not knowing how long power or water will be off or scaffolding will be in situ.  However, when I remind myself of the hilarity coming from our lounge or the sweetness of the fairy cakes: no gain without pain comes to mind.

What I’m now hoping is that those who live by Mental Capcity Act will review their approach.  We will always be renegades – wanting to explore new territory.  We will never accept that prescribed Care Pathways are always solutions for those who are living with dementia.

Our journey is just that: trying to fit us into the ways that others want us to go is not going to work  and can never be in Maureen’s Best Interest!

I believe I have made some progress to deal with the frustrations I expressed yesterday.  Unfortunately, nothing is cut and dried but I’m optimistic that some things will soon shift in our favour.  What was heartening yesterday;  when I spoke  to Kelsang Dorde about my plan to visit the Madhyamaka Centre  next week he immediately offered to change his teaching to that lunch-time.  A real act of kindness and so typical of this lovely man: a ‘no-brainer’ for him of course!

Dementia: I’ve Had Enough

Mixed Dementia

Image result for i've had enough quotesI made a call to Single Point of Access early this morning to ask our Key Worker to call a meeting of our Multi-Disciplinary Team within the next few days.

I’m sick and tired of contacting professionals who really haven’t got time to talk to me.

I hear there have been discussions but action speaks louder than words.

It may be helpful for busy professiona that there is a Best Interest meeting in the pipeline: probably a month away.

That doesn’t help Maureen and I now!

 

Dementia: New Land Ahead!

Mixed Dementia, ,

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After a long three-month journey, there is new land ahead:

  • I had a positive meeting with our Key Worker yesterday morning.
  • My Admiral Nurse will visit us tomorrow.
  • I have a seven-hour break on Thursday.
  • There will be regular seven-hour breaks on Wednesday’s, from next week
  • I have signed up for Monday’s Teepa Snow Webinar on how to solve bathing problems.
  • Our new shower room, part of our extension, will be plumbed in on Friday.
  • Maureen and I slept together last night for over eight hours.

Any extension to your dwelling is an inevitable stressor in your life.  The trials and tribulations of the last 12 weeks all became worthwhile when I saw Maureen smiling as she stood in the Sun Room yesterday.  When she talked about how we could sit out there in the winter I couldn’t have asked for more!

There certainly is New Land Ahead: watch this space!

As I draw this post to a close Maureen has just woken up frightened that she had been left alone with the baby.  She says she is worried that the baby is too cold.  I have helped her to warm our offspring up and reassured her the little fellow is now safely asleep.  It is so helpful that I have been able to talk about these episodes with my Admiral Nurse and now have some idea how to reassure Maureen when they occur!

 

Dementia: More Help Needed

Mixed Dementia, ,

Posted at 3 am:

 

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Our Anniversary Celebrations went well with a day of togetherness.  We didn’t do anything special but I tried to spoil my Bride with lots of TLC.  She loved the evening concert with Andre Reui and despite my best efforts could not understand the consequences of a poor signal from Talk Talk.

Maureen was reluctant to join me for ‘the honeymoon’ and chose to remain downstairs,  The Baby Alarm clicked into action at midnight with incessant sobbing from our lounge.  When I joined her downstairs, Maureen was convinced that they were chopping the heads off her relatives.  She showed me photographs where she believed the heads were missing.  It took me quite some time to console her and persuade her to resume lying on the couch.  Less than two hours later she was awake again.

As I lay on the single bed in our lounge, I was gently awoken by my wife who was anxious to attend to my needs.  Apparently, I was unwell and she was keen to make sure I had everything I needed.  My plea to be allowed to go back to sleep went unheeded and she continued to return to my side after walking around the house.

There are aspects of Maureen’s presentation at the moment that I’m choosing not to share on this Blog.  From my point of view, they are very concerning and I need to discuss such matters with appropriate professional staff.

My plea at the moment is to reinstate support that used to be available in my hour of need.  I have never understood the wisdom of withdrawing Maureen’s Care Coordinator or removing my access to a Support Worker from the Alzheimer’s Society.

This is a time when I need more support not less!