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Dementia: The Stark Reality

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The joy of Wednesday morning has been replaced with a couple of days of stark reality.  Just as I thought I’d got vascular dementia in the bag, it escaped and the stark reality of Maureen’s condition hit me straight between the eyes. My optimistic plans of Wednesday morning were a pipe dream and are long forgotten aspirations of someone who has lost the ability to recollect.

Today Maureen’s early morning mode is fear and confusion.  Earlier on she was asking who the young woman was who came the other day.  She has no recollection of why we might need a Wednesday night sitter and says she has never met the woman before, despite it being her third visit.  Yesterday morning she told me that she thought her diagnosis of dementia ‘meant she was mad’.

It was a little reassuring when Maureen’s Care Coordinator reminded me yesterday that with vascular dementia just as you think you’ve got it in the bag it changes and you have to get used to a new reality.  She also asked me if I had heard of ’emotional incontinence’ as it could be behind aspects of Maureen’s presentation, and I confessed I hadn’t.  However, there is one thing I generally have in the bag – how to distract and redirect when Maureen is upset: Bocelli is the man of the moment:

Although I recognise that his exalted position could change and I’ll have to find the next idol for a mature lady: thank goodness for YouTube!

Dementia: Compassion and Fear

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On Wednesday I received the sad news that a neighbour had passed away.  I delayed telling Maureen the news until the next day, as I feared it would cause a certain amount of distress.  Once again I was wrong as Maureen remembered with fondness an elderly lady across the road who had scolded her for being out by herself.  She still tells the story of an 86 year old woman with dementia, running down the road to bring her back home to me.  Later in the day, she showed great compassion to the grandson of the deceased when I invited him to our house to share our sadness over his loss.

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During the afternoon Maureen was again in a compassionate mode as she tried to console me over the pain I was experiencing in my legs.  Once I shared the news that a medical opinion was needed, to seek advice over my restricted movement in both legs, her concern was palpable.  Unfortunately, she got the wrong end of the stick and it took me a while to understand how her compassion turned to fear.  It was only when she shared that perhaps she would need someone to come and stay with her that I grasped the significance of her concern.

I think Maureen believed that a stay in hospital would follow my visit to seek physiotherapy treatment this morning.  She shared that she had mistakenly been thinking that her deceased daughter would come up and stay with her in my absence.  Her thoughts are quite understandable as I will be returning to the hospital where I had both hips replaced.

Maureen is in a state of panic this morning with the prospect of my early morning visit to the hospital looming.  Her initial concerns have been about us being on time.  Now she is worried that she doesn’t know what to wear; alongside a thought: ‘if she doesn’t know how to dress they won’t let her go home’.  It’s clearly one of those occasions when I should have said nothing and gone for my hospital appointment alone!

I realise that most of the time I’m guessing how Maureen might be seeing things.  I must confess I have no idea why a publication that the Care Coordinator left for her consideration was first placed behind the sofa and then wrapped in a fleece.  My guess is because it was from the Alzheimer’s Society but I will never know.  What I do know is that Maureen is still a compassionate woman who is often frightened by her reality and attempting to minimise her distress remains my priority: not causing it – as I have clearly done at the moment!

 

Who’s afraid of Virginia Woolf? Or Dorothy for that matter

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This post by George Rook cannot wait until tomorrow: who are the experts is so pertinent to our journey!

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VReflections on patient-NHS partnership working

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I’ve been to a workshop today to talk about revolutionising (or do I mean achieving?) real patient-staff partnership working in the NHS. Oh it was so refreshing and energising to be in a room full of people who get it, and who work hard to do it.

I like this name – partnership. In fact let’s go a step further…equal partnership.

For who is the expert? The patient/carer or the doctor, nurse, manager, director?

Who knows most? Who has the right skills? Who has the loved experience? Who has felt what illness feels like?

Well of course no one is an expert and everyone is an expert.

And who has the power in these relationships?

And who wants to retain the power in these relationships?

Several people today talked about reminding themselves when they walk into a meeting with a doctor that it should be…

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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: Credit Where It’s Due

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Image result for Credit Where It's Due pictureOur social worker continues to provide sound support and guidance as this unforgiving journey continues.  I am pleased that Maureen recognises his contribution to our welfare as noted in Girl Friday’s log:

‘Maureen happy that the social worker came to see her.  She likes that he comes to check on her.’

I’m hoping that I have set the scene for a positive reaction to two new faces this week.  Maureen’s Care Coordinator will be making her initial visit this afternoon and I’m hoping that she gets off to a good start.  Her involvement could lead to all sorts of outcomes that could have a positive impact on our lives.

On Thursday the Manager of the Home Treatment Team will be here to assess how we are doing.  It is reassuring that she wants to see us when things are going relatively well, rather than responding to our call when we are in crisis.

We are very fortunate that professional staff in this area are person-centred and are prepared to adopt a progressive approach to supporting carers and their loved ones.  The usual story with vascular dementia is a discharge from the Memory Service unless you are on medication: Maureen declined the offer of antidepressants quite some time ago.  I remember vividly her response to this offer: ‘why do I need those things when you can help me’.  She had witnessed her husband escape from a lifetime on mirtazapine with the support of a therapist and knew of Irving Kirsch’s expose of the misinformation peddled by the drug companies.

One further example where credit is due: a new carer at the weekend immediately hit it off with Maureen.  To hear them preparing vegetables for the Sunday lunch to the Sound of Music yesterday would have made an excellent recording.  I know I’m biased but Maureen would give Julie Andrews a run for her money any day.  A little bird told me that my wife had a soft spot for Christopher Plummer earlier in her life: a sign of a misspent youth perhaps?

Dementia: The Missing Link

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Great news: a Care Coordinator for Maureen is only a phone call away.  This arrangement has resulted from a significant interdisciplinary team effort to address a missing link in the support available to Maureen.  Her diagnosis of vascular dementia led to a discharge from the Memory Service, as there is no medical treatment for the condition.

I am optimistic that a Care Coordinator may help Maureen to address her concerns that she has been left ‘up the creek without a paddle’.  She frequently says that she has been offered no treatment for her condition.  It remains to be seen whether she has the ability to retain, or the willingness to respond, to what might be placed on her table: time will tell.

I’m also hoping that the Care Coordinator will be someone who I can bounce ideas off.  As ‘the Manager of this Care Home’ (as Maureen often sees it) I would welcome the opportunity of chatting over my approach with someone who is on the case and is seeing what is going on here first-hand.

Maureen is still high from our trip to Nottingham on Saturday.  I have stuck a couple of photos on the doors of kitchen cupboard as a reminder of being with her sister.  Her brother phoned last night and hearing her recount her efforts to support her sister was heartening.  I have provisionally booked an overnight stay with her brother towards the end of the month to carry on the good work.

 

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: Significant Disorientation

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We made it to Nottingham, but it may have been a bridge too far as Maureen is significantly disorientated this morning.

Girl Tuesday played a sterling role yesterday in persuading Maureen to get into the chauffeur driven Volvo. Tim, the man behind the wheel, remembered his script from the week before and played it well.  Maureen’s brother and sister in law were excellent hosts and put on a lovely lunch.  Unfortunately, the Birthday Girl, Maureen’s sister, was unwell and did not show.

Shortly before Tim was due to pick us up at 4 pm Maureen began to lose track of proceedings.  When I suggested that it was time to go she said she was ‘waiting for her husband to pick her up’.  There then followed a lengthy standoff before we could persuade her to get into the Volvo for the homeward journey. A significant personal attack followed as we were chauffeured home until a semblance of peace broke out on the back seat of the vehicle.

We had to take a natural break as we arrived on the outskirts of Grimsby when Maureen was feeling unwell.  Within half an hour of being back home, Maureen was fast asleep on the sofa; still wondering why we hadn’t seen the Birthday Girl.

As I try to deal with my own tiredness this morning it’s back to the drawing board: a good opportunity to reconsider whether long days away from home is in Maureen’s best interest.  She has been very quiet seemingly ill at ease in her surroundings and deep in thought.  It is interesting to read how other people with dementia, such as Dr. Richard Taylor, dealt with their condition but I need to understand how Maureen’s sees things!

Spare a thought for us this Christmas

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My final post before Christmas: George telling it as it is.

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I realise I haven’t been looking forward to Christmas this year.

I’ve been miserable.

Humbug, writ large.

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Cards have been arriving in the post, people I work with giving them…

A little party at one trust, carols, thanks, all that…

I ducked the second, Christmassy, half of that one.

And now I know why.

It’s time to be happy, to meet people at parties, over dinner, in the street, and be happy.

And talkative.

To tell people what you’ve been up to, how the family are, ask about theirs…

And that means remembering…names, facts, events…which takes time.

Then the words to explain those events and feelings…

It takes effort.

Moray FirthRoss and Cromarty Scotland Moray Firth Ross and Cromarty Scotland

On Saturday night this crystallised.

I can’t keep up any more. Not at all. I can’t get into conversations.

By the time I’ve thought of a word or idea they’ve all cut in, and my…

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Dementia: Getting Back To Sleep

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I have often posted my gratitude for having a father who taught me so much.  Last night on being woken for the third time I remembered his method for getting back to sleep: replaying old goals that he had seen Coventry City score.  I adapted his idea in the early hours and went through the Sky Blue team of 1987 when we won the F A Cup; remembering the players and who we signed them from.  The bonus was our Number 11 – Nick Pickering who came from Sunderland.  They won yesterday and Maureen’s sons were both there, along with our grandson, to see a vital victory as they try to retain their status in the Premier League.  It is not a good time to discuss the fortunes of the Sky Blues!

Another piece of good news: Maureen’s early Christmas present is having a positive impact as she loves twirling it on her wrist.  Her wedding ring kept slipping off her finger despite being reduced in size a couple of times so she decided a silver bangle would be preferable.  Quite amazing really as it is our Silver Anniversary this year although we haven’t been married for quite that long as I was on trial for several years. The bangle is relatively easy to find when it slips off her wrist: her engagement ring is still hiding somewhere!