Dementia: Rolling With The Punches

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Maureen sought me out, in the spare room, at 2 am this morning to tell me that she ‘had been thinking that nobody liked her’.  She was particularly concerned that her offers to help were being rejected by all and sundry.  This was very different to my status early in the previous evening when I was clearly not her favourite person..

Maureen went out for a walk yesterday afternoon and when I tracked her down she refused to join me in the car, so I left her to it and returned home.  An hour later I toured the local area once again and there was no sign of her.  As I returned from another fruitless search I saw Maureen in the garden along with one of her cousins who had kindly returned her home in her car..

Once in the house Maureen berated me on all sorts of fronts.  I eventually realised that she thought I was her previous husband when she mentioned his sister.  The attack continued for some time concentrating on my ongoing attempts to ‘belittle her and prove she was stupid’.  Following a cup of tea, and a phone call from her son, she eventually calmed down and decided on an early night.

Her visit to see me in the spare room was a sad occasion as Maureen recounted stories of always feeling left out by most people and ignored by her close family.  She clearly had no memory of her eldest son visiting us on Monday or the earlier phone call from her other son.  Once again she was very sad that there was no contact from her parents, who have long passed from this world.

When you are a Care Partner for someone with dementia you have to get used to rolling with the punches and ignoring hurtful comments.  It is clear that Maureen would like more contact with her immediate family and I have suggested, once again, that a visit to Nottingham to see her brother and sister is long overdue.

Dementia: Person-Centred Respite

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Image result for Person Centred Respite PictureThis morning I’ve arranged to call into Ashgrove Care Home to discuss their perspective on Maureen’s five days of residence.  I want to see how they felt she got on in her longest stay in residential care so far, and compare it with what she says, and I saw.  I can then   feed this into my discussions about future respite breaks when I meet our social worker tomorrow afternoon.

It is clearly difficult and more expensive to arrange home-based care for periods of respite.  However, this needs to be balanced against the impact on the individual.  Another alternative is to consider holidays together in supportive environments.  One thing is for sure: all Care Partners need adequate support and time off.  Why should such arrangements be anything other than person-centred?

 

Dementia: Seeking The Whole Picture

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Maureen woke early this morning wanting to go to the bathroom but afraid to leave her bed because there were birds in the room.  I am beginning to wonder if dreams play a part in her reality whenever she wakes after sleeping.  As she had been sleeping for long periods after the visit of her son I decided to encourage her to stay awake for a while before attempting more sleep.

I think there was something Freudian about my choice of music as we sat and as I sought The Eagles on YouTube.  As we looked back at some of our favourites from 40 years ago we discussed how life had changed in the last four decades. It was great to hear Maureen articulately expressing her opinions on how hectic life was for parents in 2016.  Anyone who was a party to such a discussion would struggle to believe that Maureen has dementia: such snapshots are very deceptive indeed.  This is one of my concerns about professional assessments.

When I meet our social worker on Thursday I am going to suggest that we seek a coordinated assessment of Maureen’s presentation.  We need to see how she is presenting when she is in Care Homes, on carer sits and home alone with me.  Capacity Assessments on one particular issue may  be required by the system but if we are to decide on her overall best interests something much more detailed is required. Perhaps a final word from The Eagles is helpful on this front:

 

Dementia : Feeling My Age

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This morning Maureen has been calling me ‘grandad’: being a Care Partner is obviously taking its toll.

She is continuing to look for ‘the little boy who keeps playing tricks on her’.  Apparently he is constantly stealing her clothes

Ian her eldst son is due to arrive shortly.

A visit to the dentist is pending at noon.

It will be interesting to see who she thinks I am in the evening after such a busy day.

Dementia: On Target? (Week 5)

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Image result for On Target PictureOur target last week was quite simple: to enjoy being together again after Maureen’s stay in Ashgrove Care Home.  This week promises more of the old routine with Carer Sits, once gain, in place for the next seven days.

High on the Agenda this week has to be planning for further periods of respite.  Any Care Partner needs to know when they are going to have the next significant break from being on duty 24/7.  I really benefitted from my respite at the Buddhist Centre and need to plan such breaks on a regular basis.  I would also like to explore the possibilities of a Winter Sun holiday before the end of the year.

One of Maureen’s reactions from her stay at Ashgrove was to suggest that she would like to have a holiday.  Togetherness has always been a feature of our marriage;  it would be lovely if we could resume our visits to Portugal during the winter months and feel the warmth from a stay at Madyhamaka together. This is something I aim to reflect upon in the coming week.

Good news on the sleeping front: my novel approach is working.  I’m now on my second book – The Sound of Trumpets by John Mortimer.  When humming the Brahms Lullaby fails to do the trick, picking up a book is helping me to get back into a sleeping mode.

Dementia: All Singing and Dancing

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We often start the day with YouTube Maureen loves singing along to the songs her dad used to sing to her when she was a child.  This one is a particular favourite and a lovely way to start the day:

In the evenings I often become our resident D J and put some vinyl on the deck.  Last night Maureen was in exceptional form and took to the floor as you will see .

With dementia you can never predict what is going to happen next.  This morning Maureen has just summoned me because she is frightened because there is a large dog in the lounge and she is frightened by the beast.  She often reminds me that she witnessed one draw blood from your mother’s leg when she was a child.

I understand that those deeply held emotional memories are the last to fade when you have dementia.  Therefore, it isn’t surprising  that Maureen remembers me being ‘horrible to her for putting her in a Care Home last week’.  This could well be one of those emotional memories that will not fade as quickly as some would suggest!

 

Dementia: Revolutionary Service To Close

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7 October 2016

Diana Princess of Wales Hospital, Grimsby dementia ward to close

Diana Princess of Wales Hospital
Image captionHome from Home started since July 2015

A hospital ward specialising in dementia care is to close due to lack of money.

The service at Diana Princess of Wales Hospital, in Grimsby, started in July 2015 but has not been able to find the necessary funding of about £2m.

Home from Home helped patients improve their independence and minimised hospital stays, said a statement from NAViGO Health and Social Care.

There were 828 referrals to the service in the year, it said.

Diana Princess of Wales is a 439-bed hospital is run by the Northern Lincolnshire and Goole NHS Foundation Trust.

The trust has 6,500 staff and runs other hospitals at Goole and Scunthorpe.

Home from Home was a partnership between NAViGO Health and Social Care and the trust.

Six weeks ago:

24  August 2016

Challenging the norm: North East Lincolnshire leading the way in Dementia care

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This week North East Lincolnshire has been highlighted as a leading light in Dementia care.

Government data published in the “Dementia Atlas” shows that service users in North East Lincolnshire have the best regular Dementia care in the country, with 86 per cent of service users receiving regular check-ups compared to just 46 per cent in other regions.

Janine Smith, Senior Operational Manager of Older People’s Services for NAViGO who provide a number of Dementia services in North East Lincolnshire, said: “Dementia can have a profound effect on an individual and those around them. It is our duty to offer them the highest level of care and compassion and the publication of the Atlas shows that here in North East Lincolnshire we are striving hard to achieve that aim.

“The report highlights that NAViGO, along with other healthcare partners, are providing an extremely high quality service for our local community which is at the core of everything we do: to provide services that we would be happy for our own families to use.”

Jeremy Hunt, Health Secretary, said nationally: “People living with dementia deserve the best possible care- and this new Dementia Atlas is designed to drive improvements across the country.

“By publishing the current levels of care, we are shining a spotlight on areas where there is still work to be done, whilst highlighting where we can learn from best practice.”

NAViGO recognises that people with Dementia need specialist care and support throughout the different stages of their illness and with this in mind, the new ground-breaking Home from Home service was launched last year here in Grimsby, in partnership with North East Lincolnshire and Goole Hospitals Trust at Diana Princess of Wales Hospital (DPoWH) and is now delivering impressive results.

Older people with confusion and delirium (Dementia) require specialised treatment above and beyond what can be provided on standard hospital wards which often only address their immediate acute medical needs.

The revolutionary Home from Home service combines physical and mental health care for older people in a bespoke environment, in what is believed to be the only unit of this nature in the country.

Service users are extremely pleased with the care they receive from the Home from Home team, with 94 per cent saying they would recommend Home from Home to friends and family.

Spending less time in hospital has a profound impact on an individual and studies have revealed a notable reduction in the average length of stay in DPoWH for people with confusion or Dementia which declined by almost 4 days from 12.7 days to 8.8 days from the inception of Home from Home to the end of May 2016.

It is statistics like these as well as the dramatic improvements to care pathways for people with Dementia which led the unit to be honoured by the Dementia Action Alliance as part of the Dementia Quality Improvement Awards 2016.

Janine added: “We need to think differently about the way in which we provide care and support for people living with Dementia and the Home from Home service is a fantastic example of how doing something in a different way to the norm can achieve better outcomes for the individuals we support as well as their families.”

Can we afford to let this happen?

 

Dementia: The Benefits Of Humming

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One of the constant tasks of any Care Partner where dementia is a factor is seeking solutions to changing presentation.  Some of my latest approaches to our journey are summarised below:

Sleep Disturbance:  When I’m woken at some ungodly hour I often find it difficult to get back to sleep.  What seems to be working at the moment is to hum this song to myself:

If humming fails to do the trick I stay in bed and I pick up my latest novel:

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I’ve almost read 300 pages now after a couple of years without a book on the go!

Frightening Animals In The Room:  Maureen woke several times last night scared that there was a dog, then a large fish in the lounge/bedroom room.  I eventually managed to ease her upstairs into the marital bedroom where there is more light and less dark corners.

Keeping Tea Warm: Maureen often asks for a cup of tea and falls asleep before it has cooled sufficiently to drink.  I plan to put hot drinks in a flask from now on so that they are available at an ambient temperature when she awakes.

Ongoing Distressing Assessments:  I’m going to suggest that a  Multi-Disciplinary Team approach is adopted by professionals, so all the information on Maureen is brought together and shared.  This would end duplication, ensuing distress, save time, and wasting resources.

We Can’t Be Married: I admit I was confounded by Maureen’s early morning assertion that she couldn’t have married me when we were in Coventry because she already had a husband.  It was one of those occasions when I resorted to humming another tune to myself and hoping for the best:

Dementia: Missing Without A Trace

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Maureen took off at great speed yesterday evening.  I hastily grabbed my jacket and trailed her down the street.  Despite wearing a pair of my size 11 gardening shoes she was going at quite a pace.  When I caught her up, and handed her a jacket, she said she was looking for her sister who had gone missing whilst in her care.

We spent about an hour looking for Maureen’s sister who eventually became ‘the little girl’.  Our search involved driving around the local area.  On our return home Maureen searched the house and eventually consoled herself that the little girl must have gone home.

My post yesterday pointed out something else that is missing in any appraisal of Maureen’s presentation; common sense and co-ordination.  The snapshot approach by professionals has serious shortcomings as it is infected by the dynamic nature of dementia.  Even the most basic reader on dementia points out that ‘once you have met one person with dementia, you have met one person with dementia’.  They also allude to the constant change that is a feature of the condition.

My mission remains to minimise distress something that was made quite clear to me very early on. by my Counsellor Paul Martin.  His advice is based on substantial experience as a Mental Health Nurse on a Dementia Ward.  Paul will always be a significant other for me, as he helped me to think my way out of depressive episodes, and escape from a life-time on medication.

It is easy to spend your life criticising the approach of hard-working professionals who are often adhering to legislation and the way things have to be done.  That has never been the intention of this Blog.  Therefore, in the next few days I will have exploratory discussion with a number of players to explore if it is possible to adopt a common Agenda that seeks to minimise Maureen’s distress, whilst also protecting her independence.  After all what is the point in having a Master’s Degree in Lifelong Learning and the Management of Change if it remains on our bookshelf?

 

 

Dementia: ‘You Don’t Know What You’re Doing’

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I wanted to make clear that my earlier post was not a personal attack on any individual.

My point is that the procedures that are being adhered to make no sense.

Dementia is viewed as a progressive condition.

There is no treatment available for vascular dementia in this country.

Maureen has been discharged from the Memory Service as further testing is deemed pointless.

It has already been established that Maureen lacks capacity in terms of her social welfare.

Therefore why is any further assessment necessary?

All yesterday achieved was sleep disturbance and  further distress!