Category Archives: General

Dementia: Time For Straight Talking

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My Cyber friend Kate Swaffer has posted a very helpful blog this morning which is a reality check for yours truly.  The following extract has helped me arrive at an unwelcome conclusion:

‘I’ve not been blogging much lately, barely monthly here, and certainly not daily on my other blog like I used to. I suppose though, it is good to report the reason why is I am actually too busy living beyond dementia to have the time!

However I am keeping up with Prof. Dale Bredesens’ latest research, and do recommend you read about it, in particular if you or someone you know is newly diagnosed with a dementia. This approach may be too late for those in the later stages of dementia, but my intuition, nursing background, own personal experience with dementia and my commonsense tells me it is on the right track’.

It is time to accept that now Maureen has a diagnosis of moderate to severe dementia opportunities for neuroplasticity have passed and minimising distress is our mission.

The Best Interest Meeting is looming as an opportunity to discuss options for Maureen’s future care and welfare.  This will be a time for all parties to put their cards on the table and support Team Collins to have the best possible life together.

Dementia: Just Wants To Sleep

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There seems little point in trying to encourage Maureen to go to Day Care at the moment: all she wants to do is sleep.  It looks as though any activity, even chatting to a Carer, is exhausting.

Concerns about ‘Best Interest’ may be academic as Maureen’s deterioration continues with no sign of a plateau.  My prime focus remains to minimise distress and try to find little things that bring a smile to her face.

 

Dementia: Notice To Quit

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Maureen often wants to go back to the house where we used to live in Coventry.  I heard from my sister in law yesterday that would have meant we would have been five minutes away from the Nursing Home my brother is being moved into on the 15th of August.  It is a shame we won’t be near to John because my Big Brother is a good man.

The circumstances of his move are unpalatable: he has been given notice to quit his current Nursing Home.  The reason is quite simple – Jean his wife has raised questions about the level of care.  In the last month or so John has been plagued by oral thrush and nursing staff at his Home have been complacent about his condition.

John has advanced Alzheimer’s he is on Continuing Health Care and is no longer able to look after himself.  The price of Jean raising questions about his care: EVICTION!

How sad that elderly people who are not able to speak up for themselves are neglected.  It’s a shame we won’t be as close by as Maureen would have liked but I look forward to seeing my brother in his new Home as soon as possible.

Dementia : TED To The Rescue

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A TED Talk has helped me this morning by reminding me that happinnes is all in your mind:

My Buddhist colleagues have always encouraged me to accept that dementia presents many opportunities for spiritual growth.

So it’s important to count my blessings and face whatever lies ahead with a kind heart.

 

Dementia: Needing A Little Bit Of Luck

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I am exhausted after another night with little sleep.  Maureen is finding it difficult to rest because of the back pain she is still experiencing following her fall in Ladysmith Road Care Home.  I am hoping that paracetamol and pain relieving gel will help her to get a little more sleep: I have given up at 4 am after another interrupted night. and drafted this post.

My plans about a bed at The Royal Court Care Home are in tatters.  The room was excellent but we have now decided that the stairs present a risk to her safety.  My contingency is to see if Day Care is a viable option until a downstairs room becomes available.   There is a steep hurdle to be overcome before my aspirations for Maureen to have several hours at the Home over the weekend become a reality: shifting her off the sofa.

I am hoping that we can cajole Maureen to Royal Court on Friday for assessment.   There are ‘cunning plans’  in place with Chloe our carer,  Maureen’s son and the Home Treatment Team geared up to help ease Maureen from the sofa.  If things go well I could then have several hours to myself on the Saturday while she spends most of the morning and afternoon in their care. 

If this Saturday comes to fruition it could become a fixed feast and gradually extended to include a mid-week stay.  All we need is a little bit of luck and the direction on the next part of our journey becomes a little clearer:

I spoke to Social Work ‘Out of Ours’ at 4.30 am so our Key Worker would be aware of our plans as she switched on her computer this morning.  I took Aimee’s advice and managed another hour in bed before Maureen was up once again, this time needing a drink.  I’m hoping she will rest a while longer so that I can have a little time to myself.

My energy tank is empty and our G P (Doctor Munjal) and others are becoming increasingly concerned about the risk of Burn-Out:  an insatiable appetite; the inability to sleep; needing to pass water frequently; aching muscle groups are far from healthy signs.  Dr Munjal insists it is time to call for help with Maureen’s care – he will play his part if she resists our plans to ease her into Day Care. When I saw him about my exhaustion yesterday the Lucky Man told me he is going to Iceland on Monday for five days: what I would give for a break of that duration!

Lady Luck is already shining down on me this morning in Costa del Cleethorpes.  A warmer day offers all sorts of possibilities.  If I can only get Sleeping Beauty to the beach who knows what might happen.  One thing is sure sun burn is out of the question with the amount of lotion we have in stock: another reminder that dementia has been around for far longer than many thought!

 

Dementia: Picking The Right Moment

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I had everything set up for the Manager at Royal Court Care Home to assess Maureen this morning but unfortunately when I returned home she was fast asleep.  He is available until 4 pm so there will be another opportunity to move things forward this afternoon.   This will be a real test of my ability to cajole Maureen into something that is in our Best Interests.  All I can do is give it my best shot and hope Lady Luck is on my side.

Dementia: A Diamond Amongst Stones

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It is probable I have uncovered a diamond amongst stones when  I made my second visit to a small Care Home in Cleethorpes yesterday.  I came away with a really positive feeling about the place.  Later this morning I will return for a further chat with the Manager.

One of my neighbours inspects Care Homes as an ‘Enter and View’ volunteer. He tipped me off that Royal Court Care Home was somewhere there was a high level of resident satisfaction.   John and I believe Care Homes would be better placed in the NHS but that seems unlikely at the moment.  

From my initial observations Royal Court would be a good place to consider for a significant Respite Break.  The room that is currently available is better than anything I have seen on my travels.   The whole place seems an ideal setting for someone of Maureen’s demeanour.

It is time to do something that I always struggle with:  park things that have gone wrong for a while and move on.  There is little point in wasting my energy on past events when I am so tired.  The dwindling energy that I have needs to be focused on creating an opportunity for a significant break so that I can deal with options for the future with a clear mind.

Dementia: It’s Not A Chemical Imbalance!

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Maureen’s mood is very low this morning but her depression is not a result of a chemical imbalance it is a healthy response to her environment.  How on earth could anyone expect her to be in good spirits after her experiences in the last week.  The solution is not to seek a chemical solution to her low mood it is to change her environment.  We are very fortunate that we are well aware of the work of Irving Kirsch and Peter Kinderman on the dated medical model to address low mood.

It always amazes me that Irving was at Hull when his pioneering research persuaded NICE to change their guidelines on the treatment of mild to moderate depression but the news has not made it across the Humber Bridge.  I speak from personal experience as a patient: told I had a chemical imbalance and needed antidepressants for life.  I also saw Maureen being told that if she admitted low mood the Memory Service would keep her on their caseload as they would be able to help her by prescribing antidepressants.

It isn’t rocket science to realise what is causing Maureen’s low mood this morning.  When she woke up she didn’t know where she was.  I had to abandon the Camp Site as she said this wasn’t a house as it was a junk yard: all traces have quickly been removed.  A couple of hours later she is in tears wanting to go home.  I have been robbed of a possible solution to that because her back is so painful from the incident in Ladysmith Road that travelling to see family in Nottingham is out of the question.  Then comes something that is really impacting upon her thinking: Maureen thinks she is in a Care Home this morning and her dreadful memories of last week dominate her thinking: ‘they are keeping us barely alive so they can charge us for being here.  

It is difficult to help Maureen change her mind set as dementia has robbed her of the ability to try the strategies that Paul Martin    has taught me to address low mood.  Tai chi is out of the question and the progression of her dementia may well mean that it is too late to learn to meditate.  So I am hoping that music will once again come to our rescue with Willie and Chris opening up with this message:

 

Dementia: Now I Understand

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YesterdayI gained a much clearer understanding why Maureen’s experience in Ladysmith Road Care Home was so traumatic:

  • The local CCG have changed where they commission beds for Respite Care.
  • Ladysmith Road Care Home are not allowed to move residents from the Orchid Suite to a more suitable location.
  •  Care Homes are being encouraged to reduce admissions to A & E.

If had known respite care was going to result in Maureen being placed in an environment that was far from person-centred I would have chosen to tough it out. My respite has been counterproductive leading to further stress and exhaustion.

Following my meeting with the Manager of the Home Treatment Team I now understand that the Best Interest Meeting is an opportunity to determine a positive way forward.  I believe there is now a genuine understanding of the need for a fundamental change in the approach to supporting us on this unforgiving journey.

 

Dementia: Straight From the Horses Mouth

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I hope the following two paragraphs are self-explanatory:

‘North East Lincolnshire Council and North East Lincolnshire Clinical Commissioning have refreshed their policy on how adult social care resources (money and services) are shared between those who need them locally.  Our refreshed policy aims to guide us on what to consider when making tough decisions about how to spend money to maximise the help we offer to adults with needs.  We have to make sure that the way we spend offers value for money, whilst still promoting the wellbeing of the individuals we are here to support, in a way that helps them achieve what matters most to them.   

An online questionnaire has been created to seek views.  These views will be used to help us understand what matters to our local population, when thinking about how we ensure everyone has fair access to adult social care and support’.

I have only skimmed the questionnaire and it does not deal with the shortcoming of the current arrangements. I do not believe the CCG are: ‘promoting the wellbeing of the individuals we are here to support, in a way that helps them achieve what matters most to them’.  The bullet points below outline my assertion: 

  • The whole system is shrouded in mystery with entitlement unclear.
  • The Care Agencies that we have experienced are not fit for purpose.  Their staff are poorly trained with awful conditions of employment.
  • Focus Social Work Staff do not have budgets and have to consult their superiors about expenditure.
  • The CCG have bought respite beds in a Care Home that is not person-centred or fit for purpose.
  • The Care Home where my wife was placed for Respite claim they are unable to make professional judgements about where clients are best placed.

It is likley that Austerity Measures have meant that the CCG have inadequate funds to meet the needs of their population.  I am aware that Kevin Bond the Director of NAVIGO resigned asserting that the CCG had failed to give the organisation a fair share of the cake. Our experiences in the last few months perhaps illustrate the point that Kevin has made and are a major contributor to my current level of exhaustion.