Tag Archives: Distress

Dementia: ‘God Is Watching Us’

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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: The Stark Reality

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Image result for vascular dementia pictures for free

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: 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: 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!

Dementia: Carpe Diem

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The sun shone on the brave yesterday as we seized the day and the clouds stayed away.  Maureen was in good form early doors so I hastily rearranged our trip to Coventry and by 11 am we were on the A46 heading south to see my mum.

Our chauffeur was superb and I think Maureen could be persuaded to travel in style in future.  In fact, she was really taken with life in a Volvo with its leather trim and smooth acceleration.  I wonder if it is too late for her to alert Santa to what the old man would like in his stocking?

My eldest daughter and her two girls were at my mum’s Care Home on arrival.  We quickly exchanged hugs (although in my haste I understand I missed out the youngest) and good wishes for Christmas before taking my mum  for a short drive in the country.  It wasn’t a day for the normal ice cream treat so mum had to traverse some difficult territory with her walking frame as we inched towards the cafe at Coombe Park.  Mum and Maureen were so taken with the Festive table decorations that a kind waitress responded to my scrounging attempt with some artificial flowers to remind mum of our visit.

On our return, we were in bed shortly after 8 pm both worn out from our mission.  It was a very tiring day but we went to bed delighted with what we had achieved and the opening of a door, Volvo of course, which could lead to new directions on our journey in 2017.

There could be no other contender for today’s Good Music.  I remember having a Christmas drink with Maureen when we were work colleagues listening to this song and thinking I’m really fond of this woman: over 25 years later I still am!

I’m a little late posting this morning as Maureen is resolute that it is time to go home.  I have just listened to a very convincing argument that we no longer need to stay in this Care Home.  I wonder if she has got wind of the Best Interest Meeting that will take place two weeks today to deliberate upon her future care and accommodation!

Dementia: ‘I Hate This Disease’

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The good news that I hoped to post today is not going to happen after all.  I have decided that tomorrow’s planned trip to Coventry to see my mum is not a good idea, despite arrangements to travel in a chauffeured driven car.

Maureen had very little sleep on Monday night: waking frequently troubled by fears and hallucinations.  Her cold and sore mouth were troubling her so much yesterday that I took her to the doctor for assessment. He prescribed Bonjela and stressed the importance of drinking plenty of fluids as there were signs that she may be dehydrated. Thankfully, her blood pressure is not giving cause for concern.

It has been an early start again this morning.  Maureen has been on the go from half past three.  She started off singing: ‘Who’s Your Lady Friend’ then moved on to being ‘Moaning Minnie’ with complaints about the service in this Care Home.  This is a side of her personality that has become more prevalent as dementia has turned my compassionate wife into a sarcastic woman: a shadow of her former self.

There are some brave people out there, who are quite prepared to share their journey – my cyber friend  Normms never pulls any punches:

Dementia: Is It the Full Moon?

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Image result for Full moon and dementia pictureSome say that a full moon causes chaos for those with dementia.  It is a possible explanation for what has happened today.  The other possibility is that having Heating Engineers in the house has upset the apple-cart.  Maureen is currently ‘letting me have it’ downstairs while I keep a check on things via the Baby Monitor.  Today has been one of the most challenging days of this journey.

The story is that I have robbed Maureen of all her belongings and used her wealth to buy this house in Cleethorpes against her will.  Throughout the day my status has changed I’m currently her brother who has been complicit in the shady dealing of that Paul.  I have taken advice from Specialist Dementia Nurses on the Konar Suite and will try to keep her safe; give her space and ensure there is luke-warm tea at hand.  It’s looks like it’s going to be another long night!

Dementia: Unbelievable

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Image result for I dont believe it pictureI will be contacting the Chief Executive’s Office of NAViGO this morning to request that her staff do not darken our door until after our scheduled meeting on Monday.

Two Support Workers arrived, unannounced, at our house  yesterday evening to conduct the MMSE Memory Test on Maureen.  Fortunately, she was asleep and common sense prevailed.  Perhaps I should have told them that she had already graduated to the ACE 111 Memory Test last year  when the Memory Service determined that further testing was pointless because of their diagnosis of ‘dementia: predominantly vascular’.

A Specialist Doctor told me in July that Maureen’s condition is now classed as moderate to severe dementia.  There is a distinct risk that further testing will unsettle her as she will see it as  another step on the road to locking her up in a Care Home and throwing away the key.  I hope common sense prevails this morning: this is far from person-centred care!

The  approach to dementia has major shortcomings which we have to endure day after day:

  • The services for dementia are rooted in mental health.
  •  The experiences of those who care for Maureen on a daily basis are consistently overlooked or ignored.
  • Professional staff consider what is happening here from the wrong perspective: dementia is not caused by an affective disorder of the mind it arises from a damaged or dying brain.

The professional approach to what is going on here will continue to be UNBELIEVABLE while the current setup remains.

Maureen has woken this morning wondering why we are in a foreign country.  This was a familiar question in the days following stroke at the beginning of 2014.  I will seek an appointment with her GP this morning to discuss her presentation.  She is fortunate that there is someone who knows her well, treats her with respect, and will listen to what she has to say with an open mind.

Dementia: ‘Watch Thee Back Lad’

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With a Best Interest Meeting on the horizon, there is much to be done.  I have a meeting with my Advocate this morning and an appointment with my Counsellor this afternoon.  This video from the Alzheimer’s Care Resource Centre is a helpful focus for what lies ahead:

I went to bed early last night and left Maureen downstairs.  I awoke at 2 am to find her sitting in an armchair.  She told me she has been helping a couple of ladies who were holding a sale on the sea front.  She believes she has disposed of some unwanted clothing.

Maureen’s diet has been interesting in the last few hours; a mince pie and some Christmas Cake. Her thoughts are concerning:  ‘I’m her husband; a miserable possessive old man’.  Apparently, we rarely do anything together; I come back here for food and then go out by myself.  My expectation is that she’s the little woman who stays at home and attends to my needs.

Image result for Dennis Skinner Quotes Picture

Maureen is clearly travelling back in time to  a very unhappy era in her life.  It is very sad to see her in this mode and as  dementia progresses my role as her Care Partner becomes increasingly challenging. It is perhaps the time to heed sound advice from  Dennis Skinner : ‘watch thee back lad!’

Postscript: Maureen thinks we are in London this morning.  She is angry that I have sold our house in Cleethorpes and brought her here against her will.  I will just have to vacate the room to leave her to her ranting!

Dementia: The Fight Within

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I have a chest infection and have been prescribed antibiotics.  My sinus passages are blocked and I’m taking paracetamol to try to keep my temperature down.  Maureen is far from well with symptoms that need checking on Monday with a home visit from our G P.

I’m using this  poem by Normms McNamara  (diagnosed with dementia 6 years ago at the age of 50) to think about how she might be feeling about her dementia:

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‘THE FIGHT WITHIN

You read my posts, you see my pics, but cannot hear my thoughts,

The fight within, rages on, so desperate and so fraught,

I`m disappearing within myself, a little at a time

Every day my mind grows smaller, such a human crime,

Some days i sit for hours, with nothing in my head,

As the day drags on, its the evening that i dread,

Short burst`s of clarity come to me, every now and then,

I write them down, send off to you, and then i`m back again,

All alone within myself, getting ever smaller,

Suffering the blows, of Dementia`s brawler,

So if one day i disappear, before i say goodbye,

Always know your friendships, in my heart forever lie’