Tag Archives: Better Practise

Dementia: Happy Reminiscing

Mixed Dementia

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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: ‘It’s Surprising What Comes Back’

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It’s been another early start this morning.  Maureen awoke around 2.30 am, having gone to bed at 7.30 pm.  I followed her shortly afterward and had a reasonable sleep apart from having to rescue her when she was wandering around the house clad in blankets at midnight.   I need to check if the CCG’s plans to bring in a programme for improving sleep patterns for those with dementia and their carers has come to fruition.

As we chatted away this morning Maureen said: ‘it’s surprising what comes back’ as she recalled her father’s funeral but mentioned she had no recollection of her mother’s.  This is the first time I have heard Maureen acknowledge that her parents had passed for ages. Generally, one of her first ideas, on most days, is a desire to contact her parents by phone or letter.

Maureen’s thinking this morning encouraged me to push at a door our Care Coordinator had nudged open a couple of weeks ago, and talk openly about her memory problems.  I have to admit this is something I have been nervous about for fear of creating further distress. Having heard a professional skillfully raise the issue I felt a little more confident about taking the plunge myself. I was pleasantly surprised about the conversation that followed and hope that I have moved things on in a very positive direction:

  • I have suggested that Maureen keeps a diary of her thoughts, achievements, and aspirations – it is already on the coffee table.
  •  Maureen wants to learn how to use YouTube and prompt cards are pending.
  •  Following singing along to ‘Do Cry For Me Argentina’, Maureen wants to find out more about Eva Peron and I will remind her of this aspiration

I’m rather tired after a busy morning: thank goodness our night sitter will be here tonight. How fortunate I am to have Key Worker who encouraged me to engage a night sitter and a Care Coordinator who made it easier for me to raise the thorny issues of Maureen’s memory problems without causing distress.

Dementia: Transformed by Bocelli and Brightman

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Maureen was really upset when she woke this morning.  She was very concerned that ‘the lady she had been looking after was cold’ and was hunting around for extra bedding.  At first, I thought she was talking about her mum but then she clarified it was ‘one of the ladies’.  It took me a while to persuade her that there was no one else here and perhaps she had been dreaming.  Then a stroke of luck via YouTube led to a positive change in her presentation.

I had heard this song for the first time earlier in the morning:

When I called it up again for Maureen she was transfixed and we spent over an hour listening to Andrea and all the beautiful ladies who accompany him.  What a medium music is at any time of the day here!

Dementia: Positive Changes

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I have made some significant changes in my approach to being Maureen’s Care Partner:

  • I’m no longer going to make my escape as soon as carers arrive on our doorstep.  Our ‘Girls’ as Maureen calls them need to be seen as part of the family.
  • I have reduced the time I spend on Social. Media significantly
  • I  have used YouTube for early morning meditation:
  • I have returned to in-house Tai Chi using this routine:
  • I am using the local Branch of the Alzheimer’s Society for support.
  • Girl Wednesday Night has now been recruited into our extended family.

It is crucial to keep my role under review as we continue on this challenging journey.

Dementia: ‘It Is Worth It!’

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Maureen was complaining this morning that ‘leaded windows make this place seem like a prison’.  When I suggested that we could change them she said ‘it was not worth it’.  Her comment led me to think what is worth trying to change on this hazardous journey?  Many argue that dementia is a progressive condition and decline is inevitable: others see that as a negative approach which Kate Swaffer has termed Prescribed Disengagement.

Anyone who follows this blog will know where my money is and will have read my feelings about Prescribed Disengagement.  Perhaps there is little point in having clear glass in our windows but it is worth trying to move some things forward:

  • I realise that ‘wanting to go home’ is likely to feature in Maureen’s dialogue day after day so I’m going to give this approach a go for a while:
  • After 25 years together I’m trying to learn more about Maureen’s extended family – her mum was one of ten.  The search is on for photographs of Maureen’s relations and hearing her talk about her family is fascinating.
  • Today’s planned expedition to Nottingham has been postponed and our chauffeur has been stood down.  Maureen is far too confused to take her away from the home base at the moment.
  • I hope to make Wednesday night a fixed feast for an overnight sit as soon as professional staff and the relevant Care Agency are open for business this morning.
  • I need to seek medical advice over tightness in my shoulders and legs with a return to Tai Chi imminent.
  • To have a chat with Girl Monday this morning about how Maureen has been over the weekend and adjust our approach accordingly.

It is worth it to progress the above irrespective of how you view dementia.

Dementia: Changing Into A Lower Gear

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Image result for Changing Into A Lower Gear for Dementia pictureDecided to post this at 3 am just to take a break from hostilities and recriminations with Mrs Dementia in full flow!

There is little doubt that I need to review my approach to supporting Maureen as her functional and cognitive capacity continues to decline.  To use a motoring analogy I need to change into a lower gear as the hills from dementia get steeper to climb. Relatives and friends also need to review their approach to supporting someone who is really struggling at this moment in time.

Maureen’s awareness of her condition has been heightened by conversations with her Care Coordinator on Monday.  Yesterday, she lamented that she was getting worse and seemed very downhearted. During the day she had moments of abject confusion: completely lost in her surroundings along with frequent time-travelling.  I didn’t help matters by encouraging a visit to a relative where the conversation flowed at a rate that was beyond her capacity to absorb.

Last night she was reluctant to go to bed and is talking incessantly into the early hours.  Maureen tells a sad tale of a life full of disappointment and lack of fulfillment.  I have recorded some of her rambling to share with professional staff.

It is fortunate that I have a scheduled meeting with my Admiral Nurse and the manager of the Home Treatment Team this morning.  We all clearly need to review our approach to supporting Maureen as dementia marches relentlessly on.

 

 

Dementia: ‘Nobody Loves Me’

General

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Shortly after Maureen woke up this morning she told me that she thought that no one loved her.  She went on to say that she needed so much help now that people were getting fed up with her.  I gave her a hug and told her how much I cared about her; along with reassurances that many others loved her.  Perhaps, I should have reminded her that I served her ‘breakfast’ in bed at 10 ‘o’ clock last night as she was reluctant to go to sleep on an empty stomach!

I have a cunning plan to address Maureen’s discomfort, that might just give her a modicum of reassurance when such negative feelings arise.  It is an opportune time to revisit our daily schedule to and consider the impact that might have on Maureen’s feelings about her self-worth.  This is where I need to concentrate my energies as reflecting on the unsupportive behaviour of others will achieve nothing.

Girl Friday is here shortly and I will chat over some ideas I have about how to help Maureen feel loved and valued.  She is also with us on Monday’s so a flexible weekly plan with a few targets beckons.

Things have taken a turn for the best here now as Maureen has asked me for a small photo to keep in her handbag, to remind her of what I look like.  I wonder who is going to remind her of the latest hiding place for her handbag?

The Dubliner’s, with Barney McKenna at his best, has to be today’s Good Music Page.

Update: added at 10 am as my thought for the day:

Dementia: What Could You Fix?

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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: ‘Please Cut Us Some Slack’

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The postponement of today’s Best Interest Meeting may well have been an inconvenience for some people but I want to argue that it is a positive development.  It is an opportunity to ‘cut us some slack’: to give us time to demonstrate that we are gradually finding a way of living beyond dementia (Swaffer).

My simple assertion, this morning,  is that it is in our Best Interest to give us a little more time to enjoy our lives together with minimal interference from others.  I’m very happy to have ‘behind the Chair discussions’ to agree how developments might be monitored.  Apologies for using a ‘trade union’ phrase for how I hope to progress matters but ex-shop stewards never die: they just go white on top.

My suggestion is to put the BIM on hold:  giving us three months to show our Spring Term Programme is working. Sorry again for resorting to old parlance but we worked together organising Adult Education Programmes for years.  Yesterday’s post indicated that music and foreign languages will feature this Term and there is more to come.  We have already piloted chauffeur driven away days and have been talking about short breaks together, rather than traditional approaches to respite.

Anyone who has seen or spoken to Maureen recently will have seen a positive change in her presentation.  I know that my wife can never return and Mrs Dementia is only ever around the corner.  However, the ‘student is learning’  and is beginning to grasp how to deal with the fact that there are now ‘three people in this marriage’. What a shame I have a lovely photograph of Maureen with Princess Diana’s ex-husband and that would have been a fitting way to end this post!