Tag Archives: Good Practise

Dementia: Lucky Breaks or Excellent Choices?

Mixed Dementia,

Image result for Lucky Breaks Picture

Good fortune was a feature of Monday – even the weather played its part to give us a  helping hand on our journey:

  • On Sunday Maureen accidentally damaged a flat screen television that we use as an amplifier for our record player.  Yesterday, on my way to getting it repaired, I called in at a second-hand shop and bought a Music Centre that may make the TV surplus to our requirements.
  • Rain meant that the window fitter had to delay his replacement of our ‘prison windows’ until today.
  • Fine weather is forecast today so our builders will begin laying the concrete floor in our Sun Room.
  • Maureen will have carers with her from 10 am until 5 am today after one of our Care Agencies managed to reschedule hours we were owed from the weekend.  With such a busy day ahead carers will be able to take Maureen out if she struggles with the level of activity here.

Today should be another milestone as our home takes its final steps in the process of becoming more suited to meeting Maureen’s needs.

The Best Interest Meeting that is scheduled early next month is an opportunity to ensure that the level and quality of care on offer will meet Maureen’s needs – more on that at a  later date.

As I said to our Key Worker yesterday, the only CQC rating that will be acceptable for Maureen’s Care Home – our house – is outstanding!

On his Facebook page Kelsang Dorde has offered an excellent choice today:

Tuesday lunchtime Meditation @ Madhyamaka @ 12.30 pm
Become an Inner Being

 

Image may contain: 2 people, people standing, people sitting and indoor

Thank you for your kindness Dorde: if things go according to plan this morning I’ll be with you in Pocklington by noon!

Dementia: ‘Two Things We Need To Do’

Mixed Dementia,

In the second of my weekly Buddhist teachings I offer a simple message  from Dekyong:

 

Update:

Maureen ‘brought the house down’ yesterday singing along to the Sound of Music.  Our builder even switched off Radio One and stopped plastering once he heard the Sound of Maureen.  It was lovely to hear her accompanying Julie Andrews as her focus shifted from her thoughts about a dead baby.

She is in good form this morning after relaxing in a warm bath.  I have no idea how home carers are expected to get a service user bathed in a half an hour call: Maureen is still in her dressing gown and unfed an hour after I began coaxing her in the direction of the bathroom.

Dementia: Remember Me

Mixed Dementia

This is our song of the week:

In the week that I have mentioned the work of Dr. Dan Nightingale, this song gives me room for optimism.  Maureen had never heard of Christie Hennessy until some time after her diagnosis of dementia.  If she can sing along with Christie, almost word perfect surely I can help her to remember that she did everything she could when her child died almost 60 years ago.

I’m hoping that emptying her bookcase in the dining room will give Maureen purpose this morning.  This will then enable us to strip the remaining wallpaper so the room can be skimmed in a week’s time.  The only wallpaper that will remain in the dining room is the wall that was decorated by Maureen several years ago.

As we labour this morning I will remind her who taught her to decorate: her granddad. She has such beautiful stories to tell of her childhood that such memories might help her to cope with her grief.

Dementia: Using Difficult Conditions As Spiritual Lessons

Mixed Dementia,

I find this teaching particularly helpful as Maureen and I travel on this journey together. I couldn’t think of a better place to start my new approach to posting on Sunday’s.

Dementia: ‘We’ve Gotta Get Out Of This Place’

Mixed Dementia,

Posted at 2.45 am

 

It’s going to be very noisy here this morning as the windows and doors are going into our Sun Room today.  We need to be ‘outta’ here by 8 am when 4 workmen will begin proceedings.  Our options for an away day are as follows:

  • A Pamper Day for Maureen at a local Care Home  – plan to stay with her.
  • A day trip to Nottingham.
  • Out and about in Grimsby and Cleethorpes.
  • Watching proceedings in the relative quiet of our rear garden.

At 2.45 am, Maureen wants to go home, my status is fluctuating and I have no idea how we will spend the day.

I also have no idea where all those years have gone since I saw The Animals at the Cavern in Margate when I was a slip of a lad.

Oh dear by the sound of it she may have just taken matters into her own hands and legged it:  wrong again she’s just come back!

Dementia: ‘Happy Talk’

Mixed Dementia

Throughout my contact with members of Our Support Teams yesterday there were three common themes in our exchanges:

  • For Maureen to remain in her own home.
  • To focus on the least restrictive option.
  • That I know my wife best.

When I reflect on the above it doesn’t get much better than that.  The local services are under resourced, with no chance of meeting the needs of their client groups but they always do their level best to be person-centered.  Never once during a busy day did anyone give me the impression that I was a pain for resisting intervention from professionals who knew best.  I continually count my blessing of a decision that we made several years ago to live in North East Lincolnshire!

Maureen was incredible yesterday.  She coped well with the presence of a close relative who she clearly didn’t know during the latter stages of his visit.  Her singing in the evening exceeded anything I have seen in a while.  If there was a local production of South Pacific they would offer her a leading part if she auditioned as well as she performed last night when she sang along to this one:

The joy on her face when she saw that scaffolding was no longer around our house was palpable.  She has slept like a ‘good un’ last night delighted that we were together – a blown kiss away in our lounge.  The fact that she said ‘good night dad’ was reassuring when you consider the respect she has for her father!

Footnote:  Our local Branch of Lloyds Chemist have to take the biscuit – Rich Tea of course – for their support yesterday;

  • The pharmacist for her general support and advice.
  • The manager for offering to help me to sort out Maureen’s digital tracker.
  • A store assistant for helping me to choose Girl Friday’s leaving presents.
  • All the other staff who always support us whenever we pop in for assistance.

 

 

 

 

Dementia: Choosing Your Guru

Mixed Dementia,

Last week I cancelled the carer sit on Thursday so that Girl Friday would be here for six hours the following day.  With extra time on my hands, I had to decide between lunch with my Buddhist friends in Pocklington or the company of Girl Friday – my Guru for caring for Maureen.  My choice was made easier by the fact that Girl Friday is only with us for another couple of weeks as she is about to go on Maternity Leave

Girl Friday has been my Guru on how to care for Maureen for over three years and I need to spend as much time as I can with her before she moves onto motherhood. Neither of us was surprised that Maureen’s dementia is now regarded as severe but we were both taken aback by the prescription of trazodone.   We both know that desertion by her family, and living on a Buiding Site are really getting to Maureen at this moment in time.  Medication that has the capacity to sedate her will not increase family contact or speed up the building of our Sun Room.  Girl Friday and I know Maureen needs compassion and empathy rather than medication.

I didn’t regret my decision to stay in Cleethorpes on Friday because YouTube meant that one of my Buddhist Guru’s was still close at hand.  The following video clip on suffering is particularly helpful to anyone who is dealing with dementia:

I managed to catch up with another one of my Guru’s yesterday; a Support Worker from the Alzheimer’s Society.   I knew she was running a Memory Cafe at a local Day Centre and decided to pop in to thank her personally for her support.  For administrative reasons, I have been told that I am no longer able to receive support from this individual.

A new Pathway for Carers means that I’m no longer allowed to have a foot in both camps – I can either use Admiral Nursing for support or the Alzheimer’s Society.  How ridiculous that as Maureen’s dementia progresses, support that I have found extremely helpful has been withdrawn.  This is a battle I could do with winning but I have to focus on more immediate struggles at the moment – the prescription of trazodone.  In my view,  that is the first step on a very dangerous ladder for Maureen.  I have seen how medication prescribed to deal with my brother’s aggression has left him incontinent and just about able to manage a smile.

I have no intention of persuading Maureen to take medication that she doesn’t need and has the potential to harm her.   The suggestion that I should give her trazodone covertly is abhorrent.  Maureen is an intelligent woman and if she discovers I’m deceiving her in any way our loving relationship would be brought promptly to an end. Hell has no fury like Maureen being deceived: particularly when she had that experience in her first marriage!

Footnote: I have decided to engage directly with another one of my Guru’s this morning:  Peter Kinderman Professor of Clinical Psychology at Liverpool University.  He leads this Future Learn Course: ‘Psychology and Mental Health: Beyond Nature and Nurture’ and I have signed up for it a short while ago.

 

 

Dementia: The Right To Say No

Mixed Dementia,

Image result for The Right To Decide Picture

We had a beautiful day yesterday.  The sun shone for most of the day as we enjoyed the kind folk of Cleethorpes at their best.  Some of them we had never met before, others  often support us on this journey:

  • A new face at the paper shop was lovely with Maureen when we collected an early morning loaf.
  • Two locals in the above shop chatted away to Maureen as we stood waiting to be served.
  • The ‘Blanket Lady’ a homeless woman who lives on the pavement in the centre of the town had a lovely conversation with Maureen as she continued asking passers by if they had any spare change.
  • The shop assistants in the Card Factory bantered with Maureen as we waited for our next helium filled balloon* to be blown up.
  • A young lad and his baby sister entertained Maureen for a few minutes as their mum made a mobile phone call.

* The choice of the balloon was a ‘no-brainer’ because Maureen had been distressed by an afternoon phone call from her son.  She said ‘ he didn’t even ask me how I was and I’ve been lying in bed ill for months’.  Such calls feed her anxiety that no-one really cares about her.  When we got home and I let the balloon loose in our lounge she struggled to read the words and then she said ‘I love you too.’

We finished our time in the town centre with a reminiscence walk as I guided Maureen around the area where she used to live as a young child.  As we walked the route she would have taken to get to Primary school,  she amazed me with her recollection of events over 70 years ago.  She recalled where her mum used to get baby milk and pay her mortgage.  As we bought a few things for our evening meal she remembered the first time she had ever seen tinned food.  Reminiscence therapy is always regarded as ‘Good Medicine’ for those with dementia and Maureen loved recalling her childhood.  In the evening, she made it perfectly clear what she regarded as ‘Bad Medicine’.

Following our evening meal my efforts to get Maureen to take her blood thinner (rivaroxaban) fell on the stony ground once again.  I tried to prompt her in several ways to no avail.   Eventually, I left her to it and half an hour later found the little red tablet discarded on the floor.

I count my blessings for such a beautiful day and  I have no I have no idea what today will bring.  The only fixed feast is to continue to offer Maureen her medication and note the outcome.  Some would suggest she lacks insight into her need to take prescribed medication but if they were here 24/7 they could not arrive at such a conclusion: she is asserting her right to say NO!

A final word from one of our heroes on this theme:

Love and peace for the weekend; sisters, warriors, and brothers.

Footnote: I have decided to close my Good Music page.  YouTube and playing records are such an integral part of how I support Maureen that I will share tunes that have had resonance on this page from now on.

 

Dementia: We Will Miss Glen Campbell

Mixed Dementia

I needed a song for Maureen this morning as she feels deserted by her family.  She knows that they are all busy but can’t understand the lack of meaningful contact.

Every morning I sing her songs to Maureen’s to let her know how much she means to me. Today, knowing that Glen Campbell had just passed away I searched amongst our vinyl for an appropriate song from him.  Our records are not in alphabetical order and I was just about to give up when I found this number on a Country Album:

My Admiral Nurse has always encouraged me to fight winnable battles and I have now accepted that trying to get family members to change their ways is a lost cause.  My focus has shifted to telling Maureen how much she means to me and Glen did the trick this morning.

I would like to pass on my sincere thanks to Glen’s family for sharing their journey so openly.  The following number epitomises the brave way they all faced dementia:

 

Dementia: Raising The Roof

Mixed Dementia, Uncategorized

Image result for Raise The Roof Picture

There are lots of reasons to raise the roof  today in our neck of the woods:

  • Navigo has once again been nominated for a national award for its work.
  • The ‘joiner’ is due today or Monday to begin his work on Our Day Room
  • I’m meeting our Key Worker this morning to review how things are going.

When Roy Lilley praises something then it is worth taking note.  He was full of praise of Navigo following his flying visit to Grimsby earlier in the week.  As I have often posted we are very fortunate to live in North East Lincolnshire where person-centred care and support for carers is the order of the day.  There is also a willingness to listen when things are not going well.

Our builders continue to make significant progress with our Day Room.  The shell of our extension is now standing and if a joiner makes it on time we will be ready for the roofer next week.  Maureen often goes out to check on the progress of our builders and their interaction with her is ‘as sound as a pound’.  If there was a register for dementia friendly businesses I would campaign for their inclusion.

I’m looking forward to my meeting with our Key Worker this morning as we need to consider Maureen’s presentation.  He is the only professional that Maureen ever remembers.  She often asks if ‘Ginger’ will be popping in to see us and that is a mark of his impact: she has no idea who the other professionals are!   She is also unaware how he will pull out all the stops to support us to continue living together in our own home.