Category Archives: Mixed Dementia

Dementia: ‘God Is Watching Us’

Mixed Dementia, ,

It’s fortunate that family will be arriving shortly as I could do with a helping hand or two.  I’m being outrun this morning with Maureen being as confused as I have ever seen her.  She woke at 2.30 singing ‘God watching us’ at the top of her voice.  I soon realised where that had come from:

However, I declined another early morning YouTube party and encouraged Maureen to go back to bed: I’m getting too old for these raves.  She managed to drop off again but I had no suck luck so I carried out an early morning Spring Clean – it was surprising what I found stashed away in the most unlikely places.

I can’t seem to settle her today, she is either ‘packing to go home’ or sitting in an armchair looking distressed.  Perhaps, she will drop off on the sofa a little later and wake up in a different mode.  I was hoping to get out when our visitors arrive but I fear that may only add to her confused state.

Dementia: Happy Reminiscing

Mixed Dementia

Image result for Happy Reminiscing Picture

Maureen and I spent a lovely couple of hours yesterday evening talking about her childhood.  It is possible after 25 years together I have grasped a little more of her early years.  I sat back in amazement as she told me stories of how her parents moved about during the Second World War to share their lives with other family members.  We also phoned her brother who helped to fill in some of the gaps and share such lovely stories of their childhood.

I’ve been up early this morning remembering aspects of my own childhood as it is the 8th anniversary of my father’s death.  I have even found another version of My Old Man which I have posted on my Good Music Page.

There is little doubt that Maureen’s long-term memory is much better than mine.  She can recall events from her childhood as if they happened yesterday, where I have few clear memories of my early years.  I have written down the sequence of Maureen’s early life to help me recall the comings and goings of her family as they tried to support each other, and stay safe, during the heavy bombing of Nottingham.  When the going is good I’m hoping that we can find some photographs of Maureen’s early years to add a little more detail to the story and make significant events easier for me to remember!

Dementia: What Could You Fix?

General, Mixed Dementia, Uncategorized,
What could you fix?
News and Comment from Roy Lilley

 

Before Xmas I linked to this story about NHS car-parking charges.  Out of the blue I got an email and had a follow-up conversation with a charming lady.  Here’s the story.
‘No one will ever know how I felt that night… walking out of the ward… along the soulless corridors, across the concourse into the car park.  I found the parking ticket in the bottom of my bag.  It was creased up, I smoothed it against the face of the box and fed it into the slot…
Ninety eight pounds….
John had taken a long time to die…
‘Dementia.  He died just before his seventy seventh birthday.  Two days before Christmas.  I’d been with him for five days.
Watching, as every component that made him the dad, the husband, the runner, the graduate, the scientist, the inquisitor, the friend, the lover, the lifelong companion… closed down.
Inch by inch, sense by sense, slipped from his grasp.  He forgot how to speak, forgot how to eat, he forgot how to see, he forgot how to drink, he forgot how to live.  He forgot how it all worked and surrendered into the arms of Morpheus. 
‘I panicked.  Where would I find 98 pound coins?   I pressed the help button on the machine.  A recorded voice said; ‘Out of hours I should call…’ a mobile.  I had no way of remembering the number or writing it down.  My phone was out of battery…
What would John have done….
I walked around the dark, empty car park.  Tears running down my face.  I found the last remnants of a tissue in my pocket.  I didn’t think I could cry anymore.  
 
Neon lights flickering, pools of darkness.  Back on the ground floor I found a machine that took credit cards; drove home.  Parked on the drive. I sat for a while and eventually put the key in the door.  I was on my own now.  I burst into tears, again…
Holiday photographs, clothes, magazines, books.  A time capsule of a life together.
‘I had to go back to the hospital the next day.  The car park, again.  
I went to the ward.  The shifts had changed and they didn’t know who I was.  They sent me to an office.  It was just after one o’clock.  Lunchtime.  I had to wait for an hour until it opened.
They weren’t ready for me. There were phone calls, patronising looks and a woman who apologised for calling him James.  Apparently, I should have telephoned.’
This story gave me an intimate insight.  
However good the the care, whatever they did… if you think the NHS is all about doctors and nurses; it’s not.  Everyone plays a part.
Which bit of this could you fix?
How about that there is no treatment for vascular dementia and it is likely to be mistakenly looked at from a Mental Health perspective.  All I can ever do Roy is keep banging the drum based on our experiences on this unforgiving journey!

Dementia: ‘Filled With Joy’

Mixed Dementia

Image result for Filled With Joy pictureMaureen was ‘filled with joy’ last night as she opened our front door and joined in with Carol Singers who were in full flow.  She sang along and conducted three young lads who gave us their rendition of ‘We Wish You A Merry Christmas’.

As the lads left a few coins better off I followed them down the path and thanked them for giving Maureen so much pleasure.  They appeared to understand how meaningful their performance had been for someone who had dementia.

‘Filled with joy’ has real resonance this morning as it is a catch phrase from one of our grandaughter’s.  What gives it real significance is that her dad will be popping in to see us this morning on his way back from a trip up North.  It will be interesting to know if his daughter ever found the dream that she lost when she woke up in our care several years ago!

I wonder what the going rate is for Carol Singers these days?  Thank goodness they were too young to claim the Living Wage!

 

Dementia: Feelings Matter Most (Sheard)

Mixed Dementia

My optimism from yesterday originated from the news that Maureen will have a Care Co-ordinator in the New Year.  Our Social Worker has played a significant role in campaigning for the missing link in Maureen’s support package:  CONTINUITY. From an initial conversation yesterday,  I’m optimistic about this development as the person responsible for resourcing a Care Co-ordinator pointed me in the direction of this man:

I had never heard of David Sheard until yesterday and I am very interested in his thoughts on Dementia Care.  Therefore, I will spend part of the Festive Period considering his thesis

Dementia: Being Upfront

General, Mixed Dementia

Image result for Being Up Front PictureI have now left professional staff in no doubt about the outcome I’m looking for at Friday’s Best Interest Meeting.  Maureen and I want to stay together and I will play no further part in any plans to put her into permanent care. However, I would want the meeting to come up with a safe solution for Respite Care.

There has never been a satisfactory outcome when Maureen has gone into Respite Care.   On her birthday I found her bruised and battered in a place that a Specialist Doctor said was likely to lead to a further deterioration of her condition.  Then she escaped from another Residential Home and refused to move from the Centre of Cleethorpes until I came to pick her up.  A later attempt resulted in a phone call to inform me the police had found her when the Care Home were not aware that she was missing.  Finally, I visited her at the aforementioned  Home in the latest attempt at Respite and the staff were unclear of her whereabouts.  Eventually, I found her in what is called the ‘new build’; a suite of rooms yet to be brought into commission.  She was shut in an unlit room in an unsupervised part of the building. Following this incident, this area has eventually been made inaccessible.

I think there are serious questions to be asked about the monitoring of  Homes where we have sought Respite with the support of the Local Authority.  Maureen has been at risk on four occasions and there are issues about the reaction from a number of quarters.  Consequently, I’m in the process of seeking legal advice on how my wife is being put at risk when we are paying the going rate and anticipate a duty of care.

It has taken a while for me to comprehend why Maureen keeps saying that ‘I ‘ve tricked her or I’m attempting to trick her’.  I think it is her way of saying that I have sold her a pup – saying: ‘Respite will be good for her when it has clearly not’.  I have given her my word there will be ‘no more trickery from me’ and that from now on we’ll  stay safe together!

 

Dementia: Always On My Mind

Mixed Dementia

I have been advised to take Special Measures to attempt to minimise Maureen’s distress until a Best Interest Meeting at 10.30am on Friday.  This is because when we  leave the house she is totally disorientated on our return.  Yesterday was a repeat of the previous day when she became very hostile and aggressive following a short car trip to the shops.

There is 24-hour telephone coaching available whenever I need support.  Two of my neighbours are on red alert if I need immediate help.  I am also reassured that this Blog gives me access to support from far and wide.

I have alerted Ashgrove Care Home to the possibility of emergency admission.

Professional advice is to try to keep things simple for the coming week.  Unfortunately, there is a new Carer on the block today and tomorrow; thankfully familiar faces for the remainder of the week.

My current infection may be my salvation as I won’t feel well enough to go too far.  This may focus ‘Nurse Maureen’s’ attention on keeping me well.  It matters not that she sometimes calls me dad, grandad or an old work colleague.  Even with dementia generally calling the shots, she is still that nurturing loving person I have been privileged to  live with, and love, for 25 years.

Footnote: Normal blogging will be resumed as soon as possible.

 

 

Dementia: Assessment Needed

Mixed Dementia

Image result for Mental Health Assessment is needed Picture

There is a fundamental change in Maureen’s presentation and  assessment is needed.

My priority is to minimise distress and thankfully she recognises my voice.

I still have this dreadful infection and am singing in a croaky voice.

Thank goodness for paracetamol honey and lemon juice.

Back to hand holding and waiting for the return call.

Over and out!

Dementia: It Feels Like Flu

Mixed Dementia,

Image result for Vicious Flu virus Picture

I am feeling much worse than yesterday as it becomes a struggle to stay on my feet.

Maureen may well be just the same as when she is not sleeping her confusion is rampant.

Thank goodness Lynne will be here at noon to prepare some lunch.

I have asked for a tea time call to help us get through the day.

We never thought about times like this when we ran off to the seaside together!.

Dementia: Protecting Our Best Interest

Mixed Dementia,

Image result for Best Interest Decision Picture

Our phone line was hot yesterday and there was heavy traffic elsewhere.  On occasions, I resorted to a combative style that is a default from years of trade union and political activity.  Sometimes I think pressure and conflict bring out the best in me.  However, in all of this, the consistent advice was to protect our Best Interest.

‘At the end of the day’ as is often said in this neck of the woods, there was light at the end of the tunnel.  I believe there is a way forward to ensure Maureen receives 24/7 care with me by her side.  Discussions are at a very preliminary stage but I’m optimistic that a radical solution is around the corner.

Music was the medicine that kept us both going throughout a rather busy day.  The resident D J played some golden oldies for a couple of hours and his Singer Lady was in great voice. We played ‘Spot That Tune’ for a while.  We also made up lots of other musical games.  John Travolta and Fred Astaire took in turns to take to the floor sometimes dancing alone, others with Ginger and Olivia at his side.

Image result for Susan Macaulay picture

Susan Macaulay, above on the left, has suggested that we should record events here so that they can be shared on my blog and elsewhere.  This is something we need to explore when the time is right and we have protected our Best Interest.

Chloe is back today and Maureen is really looking forward to seeing her.  Gail has played a blinder in the last couple of days.  If ever I wanted to set up an Agency training care staff these two excellent women from Hica Care Agency would be part of my team.

I continue to count my blessing that we moved to Cleethorpes.  Like all local authorities, North East Lincs continues to be hampered by Austerity Measures.   However, I never doubt the integrity of professional staff as they do their best to paper over the cracks.  Unfortunately, we are already at the sharp end of the crisis in Social Care: a largely unregulated service that is underfunded.  It’s no consolation to know that we didn’t vote for Osborne and his mates from Eton and never would!

Footnote: A rather special song is on my Good Music page today.