Tag Archives: Tiredness

Dementia: SOS

Mixed Dementia, ,

Image result for Sending Up Distress Flares Picture

I sent up the distress flares by contacting Single Point of Access at 5.30 this morning with a request for a return phone call from Focus Adult Social Care.  A challenging evening led to a dreadful night with little sleep.  The dawn chorus from Maureen continued her incessant late night ranting:  her theme of being ‘abused, let down and frustrated by the behaviour of others now and throughout her life’  has continued unabated.

No matter what I’ve tried I have failed to distract and redirect Maureen from her current focus on always being ordered about and encouraged to take part in pointless activities.  This is clearly not the time to persevere with suggestions about showering or personal care.  A mug, thankfully empty, was hurled in my direction yesterday when I suggested she could consider stepping out of her PJ’s for the first time in over a fortnight.

I’m keeping my fingers crossed on three fronts this morning.  Firstly, I’m hoping that the Duty Worker from Focus will return my call and make a supportive visit to discuss options for additional support.  Secondly, that Girl Thursday is back on duty after a period of sickness and a familiar face will help Maureen to settle down.  Thirdly, when Girl Friday (Maureen’s hairdresser) returns from holiday tomorrow she might be able to nudge Maureen into the shower cubicle.

Yesterday, I was hoping that my Dancing Queen would let me lead on this ‘dance with dementia’.  This morning, I need other partners to help me to change the music and slow things down for a little while.

 

Dementia: ‘Bless Her’

Mixed Dementia,

Image result for Bless Her Picture

I would gamble that if I mentioned Maureen’s behaviour this morning the locals would say ‘bless her’.  However, being woken just after midnight is not something I’m exceptionally pleased about along with being told  I’m a ‘nasty, horrible man’.  My sleepy response to her question about ‘where are the others’ led to increased vitriol.   When I suggested that she lay down in beside me in bed her response is probably best not repeated.

Once I followed Maureen downstairs she was in fits of laughter as she sang:

I wouldn’t be at all surprised if there isn’t a medical term for her early morning presentation and a tablet for it.  Maureen sang a few others numbers before she lay down on the sofa and went back to sleep.

My response to blood-curdling cries at 4 am were a little more conservative than my earlier attempts to console Maureen.   She had woken up feeling dizzy and scared.  My presence seemed to have a calming effect and she went on to aplogise for waking me as she was aware ‘that it would upset my wife’.  Then I risked it by confirming that Maureen’s mum was dead when she pleaded with me to tell her the truth.

A little later, when I tried to distract and redirect Maureen I was surprised by her response.  I had moved the conversation on to what to buy her for her birthday on the 26th of this month and she said ‘you have already given me my present by telling me the truth about my mum’.   She went on to tell me that she was fed up with people not answering her questions because they didn’t think she could cope with the truth.

I have decided to gently take Maureen up on her request to tell her the truth and see where it leads.  To an extent, I feel there is little to lose providing I do it in a way that attempts to minimise distress.  Unfortunately, my first shot on this front has not gone well when I suggested that Maureen sometimes ‘forgets’ to take her tablets it was greeted with abject denial.

The next ‘truth issue’ has to be personal care: once again I will attempt to nudge Maureen into taking a shower and changing her clothes this morning.  If words don’t do the trick I will pluck up the courage to spill a glass of water down her.  What else would be expected of a nasty, horrible man in the circumstances?  I’m not sure if the locals will continue to bless her if she continues to walk the streets in PJ’s that remain inside out and have become rather shabby after being worn for two weeks!

Dementia: Post Respite Syndrome

Mixed Dementia, ,

I beginning to wonder if  ‘Post Respite Syndrome’ is inevitable as things never seem to go well after Maureen has been in a Care Home.  In fact, little has gone in our favour since she has been back home.  It took almost a week before the toxic impact of constipation moved out of our household. Then we haven’t seen any of our regular carers during the lately: no wonder personal care and changing clothes has gone out of the window.  The only exception being that Maureen’s is now wearing her  PJ’s inside out!

Maureen has been sleeping a lot since her return home.  My sleep has been chaotic, to put it mildly.  We have rarely ventured out together, so our trips to the local shops for cognitive stimulation in the community have been minimal. visits from family members in the last week have not gone well.   It took quite some time before hostilities came to an end when one of Maureen’s sons visited last Sunday.  A long awaited visit of her favourite granddaughter on Thursday was tinged with sadness as Maureen seemed extremely unsettled and wandered around like a lost sheep for a lot of the time.

Visits from family members in the last week have not gone well.   It took quite some time before hostilities came to an end when one of Maureen’s sons visited last Sunday.  A long awaited visit of her favourite granddaughter on Thursday was tinged with sadness as Maureen seemed extremely unsettled and wandered around like a lost sheep for a lot of the time.

I’m hoping that Girl Saturday will be able to work her magic this morning with Maureen spruced up and my dinner on the table when I return from basking in the warmth of the Spa at the Leisure Centre.  Perhaps, the equivalent of a delivery of ready-mix concrete, just as our builders had yesterday, would provide us with the foundations to move us on from ‘Post Respite Syndrome’ in the following week:

Dementia: Facing The Music

Mixed Dementia, ,

The ‘Little Girl’ as Maureen calls her came to my rescue yesterday evening.  As soon as I called her up on YouTube Maureen’s presentation changed:

I was rather shocked by what I saw when I called to pick Maureen up from Alderlea Care Home yesterday.  I watched an elderly lady with a rather hunched posture attempting to escape the attention of a male resident.  She greeted me with ‘here’s Paul’ but I was immediately challenged by her suitor who wouldn’t accept that I was her husband.  He became rather persistent in his questioning of my status and it took the intervention of a member of staff to shake him off.

Maureen’s confusion was paramount as we tried to resolve a missing weekend case full of her clothing.  I found it difficult to comprehend her reality, apart from grasping that ‘I was a wicked man for putting her in this place by lying to them about things she had done wrong’.  She was hostile to all and sundry as we attempted to clear up any outstanding matters from her residence.

Once home it took a short rest, a cup of tea and an evening meal before hostilities began to ease.  Then music paved the way for a beautiful evening with the ‘Little Girl’ working her usual magic.  When Maureen asked me to dance to this one from Rod I breathed a sigh of relief:

This morning Maureen is in raptures about the pleasant evening we spent with her dad last night.  She is delighted that he enjoyed singing with the children!  She is also really pleased that we will be going to a local farm to pick some raspberries this morning.

Tom Schuller my Senior Lecturer from my days at Warwick University, often suggests I spell out the lessons I am learning from our journey.  My simple message this morning is: following a Respite Break always be prepared to face the music and get the fruit in!

 

Dementia: The Shape Of Things To Come?

Mixed Dementia,

 

Image result for The Shape Of things To Come With Dementia Picture

I’m drafting this post at 11 ‘o’ clock at night hoping that Maureen will fall asleep while she is downstairs by herself.  It is pretty wild outside so it is not a good time to wander the streets with her as she tries to find her way home to her husband and children.  She is aware that I have locked her in and has accused me of ‘losing it’.  This is a rather disappointing end to a very pleasant evening listening to some of our favourite records.

Nat King Cole dug me out of a hole earlier in the day after Maureen reacted with hostility when I suggested that she might like to go shopping with a new carer.  She remonstrated with me strongly to that suggestion making it very clear that ‘I should stop trying to interfere in her life’.  Half an hour later she was singing and dancing with the new kid on the block as Nat serenaded them both.   Girl Tuesday afternoon will be back next week at a slightly later time.

I’m now on another steep learning curve of how to balance Maureen’s safety whilst minimising her distress.  I would still contend that it is premature for a DoLS application as that might well restrict my room to negotiate a pragmatic way forward.  This is one of the many issues I need to discuss with our Key Worker when we meet at 9.30 in the morning.

Update at 7 am:  The night passed relatively peacefully with Maureen eventually making her way upstairs.  She woke a couple of times in the night concerned about the welfare and whereabouts of her mum.

Maureen’s demanour this morning has me completely baffled.  She is trying to work out if we are married and if she has been down the aisle on a previous occasion.  Whilst her confusion on her marital status is paramount all underwear is in place for the first time in ages:  perhaps she has called time on being a member of Women’s Lib!

 

 

Dementia: A Change Of Perspective

Mixed Dementia,

 

Image result for Seeing Things Differently Picture

I think I have been looking at things from the wrong perspective as I have tried to fathom a way forward on this hazardous journey.  Firstly, I have been focusing on Maureen behaviour rather than my reaction to her presentation.  Secondly, I have been concentrating on the view from our lounge rather than reflecting on the beauty of our back garden.  Yesterday,  two people offered me another route on this journey that might just help us return to the straight and narrow.

Christy Moore posted Validation Therapy& Therapeutic Fiblets in Action with real life examples of how to deal with some of the very issues that  Maureen presents on mosts days.  I found her suggestions on how to deal with ‘Wanting To Go Home’ particularly helpful.

The plans from Daniel our architect on a Sun Room as an extension to our house helped me to see how our usual view has been from the wrong perspective.  How lovely it will be to spend our days overlooking our beautiful rear garden rather than the bungalows that are across the road.

If I begin to focus on my behaviour rather than Maureen’s, and we concentrate on looking out of rear windows this journey might just become a little easier in future!

My perspective on yesterday was that we had a really good day:

  • Girl Wednesday was back on duty after 12 weeks off sick
  • Maureen passed her physical with the GP.   His compassionate approach was, as always, person-centred.
  • Maureen’s Care Coordinator discharged her from the Memory Service back into the care of her GP.
  • Maureen was happy and contented for most of the day.  She wondered why the Care Coordinator and her colleague had paid us a visit.  She was puzzled why they hadn’t rewarded us with a prize following their compliments about our rear garden.
  •  We had a lovely afternoon walk around our neighbourhood.
  • We slept well together for most of the night apart from one minor incident when Maureen thought there was a leaking gas pipe in the bedroom.

 

Dementia: A Stupid Mistake

Mixed Dementia, , ,

Image result for A Silly Mistake PictureWhen I finally decided to get up this morning, very tired after a difficult night, I thought I had made a stupid mistake during yesterday’s meeting with our Key Worker.  On reflection, I had spent too much time chatting about what had happened during my Respite Break, rather than what lay ahead.  None of that conversation will help my aching body and tired mind this morning.  Then as I woke up it came to me: I don’t need additional carer sits today or tomorrow I need domestic support.

A simple phone call to the Agency requesting that Girl Saturday and Sunday arrives at 11 am rather than noon could make a significant difference to our weekend.  We will pay for this additional time as we need help with domestic duties rather than additional sitting time with Maureen. The time has come for the Resident Chef to hand over Saturday and Sunday dinner to The Girls.  My only problem will be getting through on the phone as this particular Agency has not acted on a phone message I left earlier in the week!

As my Admiral Nurse reminded me on Friday we never know what is behind changes in Maureen’s presentation.  Last night was a belter with Maureen awake every couple of hours with extreme levels of fear and confusion.  She has just stirred again seeking confirmation that we are married and enquiring what time I will be going to work.

I’m hoping that complimentary therapy of a different kind might ease things a little during this challenging phase of Maureen’s condition.  She often says she feels useless at the moment, so I’m taking every opportunity to thank her for all sorts of things: from her pleasant demeanor to how stunning she looks since she had her hair trimmed in Ashgrove.  Unfortunately, I have mislaid the reference for this approach and hope readers remind me of the author of this strategy to supporting someone with dementia.

One obvious activity today is to dig out our wedding video and photos.  It will be interesting what memories this might evoke for Maureen: it will certainly remind me of how stunning looked on our Special Day.   I’m pretty sure we have both got our outfits and wonder about a dress reminder of our Special Day – now that would really be a special kind of a distraction if the going gets tough today.  How on earth I shift her from looking for her mum and grandmother this morning is another matter!

Dementia: Memories Of The White House

Mixed Dementia,

Image result for the white house agni corfu picture

It was warm enough in Cleethorpes yesterday to remind us of the beautiful holidays we spent in Corfu.  The memories of those hot days scrambling over the rocks from Kalami to Agni Bay taking in the White House, pictured above, came flooding back.  This is the spot where Gerald Durrell wrote My Family and Other Animals.

It may have been the aroma of factor 30 sun tan lotion that brought back the nostalgia of those beautiful days in Corfu.  One year we had three separate fortnights in Kalami; each time as we landed on the island keeping our fingers crossed that we would be ‘allocated on arrival’ to our favourite spot.  We didn’t have much money in those days and took pot luck with telephone deals from Portland Holidays costing around £150 for a couple of weeks in the sun.

I’m hoping that the hot weather was the guilty party for Maureen’s challenging presentation yesterday when I just couldn’t keep her in the house.  We walked together ‘early doors’ and then I seemed to spend the rest of the day tracking her or waiting for her to return.  On one occasion it took over an hour to persuade her to come back home. after she had even declined an offer from Girl Wednesday of a lift in her car.    Then late afternoon, a kind neighbour drove her to our door after finding her on the way to Cleethorpes.  I am beginning to wonder if she was after a bottle of Ouzo or seeking the shade of the White House.

Our Key Worker is due at ten with some feedback on Maureen’s presentation while she was in Ashgrove.  It is unlikely that he will be able to tell me anything that would convince me to risk putting her into a Care Home when I meet Irving Kirsch and Tom Schuller, in London, towards the end of June.  I wouldn’t want to be wondering how Maureen was when I  was having dinner with two people who have been so important in my life:  Irving’s research helped me to escape from a lifetime on antidepressants;  Tom supported me at Warwick University with my own research for a Masters Degree.

In future Carers’ Respite has to stick to the decision of the Best Interest Meeting to the letter: ‘for Maureen to be cared for in her own home’.  That will be expensive and difficult to organise but  Maureen has paid a very high price for the alternative!

Dementia: A Rude Awakening

Mixed Dementia, ,

Image result for A Rude Awakening Dementia PictureI had a rude awakening from yesterday afternoon’s siesta.  I rushed downstairs to find a neighbour at the door, with Maureen standing in her drive looking rather forlorn.  As we tried to entice Maureen back home she stormed off saying ‘of course Paul never does anything wrong’.  I trailed her as she walked around the block before eventually coaxing her home with the prospect of a cup of tea.

It was fascinating to watch Maureen on her chosen route around our neighbourhood. She stopped several times; occasionally venturing down neighbour’s drives before she neared our home.  We bumped into one or two friendly faces on our journey.  They are now familiar with Maureen looking for me and taking in the fresh air she constantly craves.

Yesterday’s rude awakening has left me in no doubt that tomorrow’s Respite Break is sorely needed.  I just hope that I can stay awake for long enough to make sure that Maureen gets to Ashgrove Residential Care Home in one piece.

I hope it warms up today as our central heating boiler has developed a fault.  A cold house with no hot water might just tip the balance between Maureen wanting to stay here tomorrow or go down the road into the warmth of  Ashgrove.  How strange it would be if it took a while to get the heating working again!

Dementia: Mental Exhaustion

Mixed Dementia,

Image result for Exhausted Carers Pictures

After a much better night, I realise how mental exhaustion has sapped my ability to think clearly.  Yesterday our Key Worker came to our rescue with a Night Sitter who has been a  breath of fresh air for both of us.   He also encouraged me to explore the possibilities for an immediate Respite Break by placing Maureen in a Care Home.  My task this morning is to reflect on the options for regaining my vitality and ensuring Maureen is in safe hands.  I’m keeping my powder dry at this stage until further discussions have taken place this morning with a number of  key players.