Dementia: I Got Them Off!

Mixed Dementia

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I’m counting my blessings following some positive developments this week, culminating in ‘getting them off Maureen’ this morning.

Our New Girls are both excellent additions to our team of carers and our Agencies are on board with sending the same people each week.  Our builders are making good progress and scaffolding is now a feature of our back garden.  Any fears about the impact of the work on Maureen have been dispelled as her interest has grown with workmen being around.  In house ‘building stimulation therapy’ goes on throughout the day with benefits to us all: stimulation for Maureen and a greater understanding of dementia for our builders.

Our New Girls are both excellent additions to our team of carers and our Agencies are on board with sending the same people each week.  The builders are making good progress and scaffolding is now a feature of our back garden.  Any fears about the impact of the work on Maureen have been dispelled as her interest has grown with workmen being around.  In house ‘building stimulation therapy’ goes on throughout the day with benefits to us all: stimulation for Maureen and a greater understanding of dementia for our builders.

As a Care Partner for someone with vascular dementia you are always walking a tightrope: ‘you think you’ve got it then it changes’ as Maureen’s Care Coordinator often said.  Girl Thursday found herself in that position yesterday just as she was about to ease Maureen into the shower she backed out.  I managed to carry on her sterling efforts early this morning and ‘got them off, Maureen’. and accompanied her into the shower.

Many thanks to all those people who suggested how to resolve Maureen’s reluctance to take a shower and change her clothes: particularly The Dementia Sherpa. – one of her suggestions was the turning point in bringing this long running saga to a positive conclusion.  There is also a helpful article in the Alzheimer’s Reading Room on how to deal with a reluctance to take a shower.

It’s Maureen’s birthday on Wednesday and I’m really not sure how to celebrate the passing of another year.  As always she would prefer spending the day quietly together.  It is reassuring that family accepts that now dementia is a factor they need to be circumspect about how they handle her special day.

Today’s Good Music page expresses my gratitude to those who have helped us to have a good week.  Who better to express our thanks than The Scaffold!

Footnote: Maureen took off her own socks and as things developed this morning!

 

Dementia: Creating Confusion

Uncategorized

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It would be simplistic to label Maureen’s behaviour towards her carers in the last 24 hours as challenging.  She was hostile and uncooperative during the time Girl Tuesday was here.  She carried on in a similar vein with Our Night Sitter accusing her of following her around.  I would assert that Maureen is a victim rather than a cause for concern: ‘strangers’ are causing her confusion leading to challenging behaviour.

For some unknown reason, Girl Tuesday had not been on duty here since early June.  She used to be one of our regulars and had a really good relationship with Maureen.  When she arrived yesterday Maureen had forgotten who she was.

Maureen was asleep when ONS arrived last night and she awoke to find another woman in the house.  This may have been ‘a red rag to a bull’  reminding her of the days when she was aware there were other women in her first marriage.

It is relatively easy to resolve the Girl Tuesday issue with a phone call to the Agency.  We need her to be a regular part of our team of carers once again and I’m optimistic that Maureen will eventually accept her back into the fold.  The issues with having another woman in the house at night are not as easily resolved so we have suspended night sits for the time being.

Update:  Maureen is in good form as I serve her a banana sandwich this morning.  She has been singing a song about my ex-wife being a s*** bag but says she was her dad’s wife.  Her clothing has been changed at last: she is now wearing her cardigan inside out and back to front.  She has been praising a carer who came the other day.  Once again I have no idea who she is talking about but that is nothing new!

Dementia: ‘Take Your Time’

Mixed Dementia,

This song from Buddy Holly came to mind when Maureen woke today at 4.30am:

Maureen’s early morning presentation gave me hope that my dear wife had come back. She had made her way up to the marital bedroom last night as I lay fast asleep downstairs.  When I met her on the landing this morning she had fresh clothing in hand and I wondered if this might be the day she would ‘get them off.’  Half an hour later reality struck and Mrs Dementia was at full throttle and I realised she would probably spend another day in her PJ’s.

As I sat typing in our Box Room Maureen was a partition wall away waxing lyrical about my wicked deeds.  Her reality was that I must be involved in some sort of game where I took her to a strange place against her will.  It is one of those occasions when I will need to take cover and left her to rant.  It wass not in my interest to absorb her vitriol

Thankfully, Girl Monday and Wednesday will be here in a few hours.  That will give me a couple of hours to myself where I can mix with other people who might share something of my reality.

This one from Frank Sinatra seems an appropriate way to close this post::

We all have to tread very warily now when we are attempting to encourage Maureen to engage in personal care to avoid being accused of assault, or even worse in my case.   It is imperative that I keep Buddy’s and Frank’s words firmly in mind as Maureen’s reality can change at the drop of a hat with my status moving from hero to below zero!

Update: I’d got it wrong it’s a Girl we haven’t seen for a while this morning and Maureen’s giving her a hard time.  I’m going to pop to Alderlea Care Home to explore the possibilities for Day Care along with a hairdressing appointment.

Dementia: Tying Up Loose Ends

Mixed Dementia,

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Things went relatively well yesterday as I tied up a few loose ends:

  • I tidied up the layout of my Blog to make it more user-friendly.
  • I contacted the Agency of New Girl/Sat and Sun to praise her work.
  • I inducted New Girl Mon/Weds who settled in well.
  • I met my Admiral Nurse for support and requested a rethink over the availability of my Support Worker from the Alzheimer’s Society.
  • I confirmed with my lawyers that matters were in hand over the application for Deputyship under the Court of Protection.
  • I organised a weekend break in August with Maureen being cared for in our home.

There is no doubt that Maureen’s presentation is becoming more challenging.  When she woke yesterday morning she was keen to go to school.  She told me how boys made life difficult for the girls as they were so noisy and chased them around the playground.  A short while later she was attempting to leave the house with a bundle of clothes under her arm on her way home.  My status can change within minutes from a relative, rarely her husband, to someone who works in this Care Home.  As Maureen fear of men along with her confusion about who I am has become more prevalent it is clearly safer for ‘The Girls’ to try to encourage her to engage in personal care and change out of those PJ’s!

 

Dementia: Seeking Firmer Ground

Mixed Dementia,

It has taken our builders a couple of weeks to prepare the ground for our Day Room.  The footings have now been dug, the concrete poured, and bricklaying will begin in earnest today.  As I have watched their painstaking work I have been involved in a similar process of attempting to seek firmer ground for the weeks ahead.

Following a sound performance by a new carer at the weekend I’m in an optimistic frame of mind this morning.   She played it well; never invading Maureen’s space and providing support when it was needed.  Her Sunday Dinner was so good that Maureen didn’t even know there was a new chef on duty.   So despite a change of personnel my aspirations to be relieved of time in the kitchen at the weekend can still be fulfilled.  The inside information I have on a carer who will be making her first appearance here today is also good, so that is a relief.

A month has almost passed since my Pilgrimage to Paddington and it is time for another break from my caring duties.  I’m hoping that Maureen will be able to stay at home this time and avoid the fall out from being in a Care Home.  Our Night Sitter is in the process of confirming her availability to ‘live in’ during my absence which has been agreed as ‘in Maureen’s Best Interest’.

Our Day Room will really begin to take shape this week if we are blessed with fine weather.  Patience on my behalf and a little bit of luck might just help us on our journey!

Dementia: Heads Up Pays Off

Mixed Dementia, ,

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My ad-hoc induction of a new carer paid off yesterday, as on my return from the Leisure Centre Maureen was keen to introduce me to ‘the new lady’.  The new kid on the block had thanked me earlier for giving her a ‘Heads Up’ on Maureen, as on her arrival she knew nothing about us.  This was very disappointing as her Agency had agreed on Friday to provide her with a ‘Heads Up’ on Maureen.  It seems likely that I will need to be prepared to do the same on Monday when there will be another new lady sitting with Maureen.

One of the things I need to give myself an ongoing Heads Up on is that Maureen’s short-term memory is barely functioning at the moment.  The positive conversation about changing clothing that was so was well received in the early hours of Saturday was forgotten and rejected by lunchtime.  Our plans to listen to UB40 together suffered a more serious fate.

Maureen was asleep on the sofa as UB40 were about to begin their performance.  When I  woke her and reminded me of our date she encouraged me to go by myself as she was tired.  Taking her advice I drove a short distance to join fans who were happy to sing along on the perimeter of Meridian Point but reluctant to fork out the £35 entrance fee.

When I returned home Maureen was still fast asleep and appeared at our patio doors as I was listening to UB40’s encore from our garden:

I encouraged Maureen to join me in the garden hoping for a dance to remind us of that lovely night over 25 years ago when we saw UB40 together at the NEC.  She told me in Anglo Saxon ‘to go away’ as ‘I had not woken her to see the concert and listen to the music’.

The Heads Up on all of this is that Maureen’s short-term memory is not what it was. There would have been no point in telling her that Ali Campbell was no longer with the Band and arguing about whether I had tried to get her to accompany me on a short trip down the road to listen to the concert.

Maureen is in floods of tears as I draw this post to a conclusion because: ‘they have gone out in my car again and not taken me with them’.  Dementia has brought out into the open Maureen’s feelings about people taking advantage of her and treated her unfairly.  It wouldn’t take anyone who knows her life history very long to work out the probable sources of such feelings.

Dementia: ‘Just Go For It!’

Mixed Dementia, ,

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Girl Tuesday afternoon, now also Our Night Sitter (ONS) arrived last night on schedule at 10 pm for the beginning of her shift.  Maureen was asleep on the couch when she arrived so I let her in and hot-footed it upstairs to bed.  It took a while to get to sleep with Craig David mid set at Meridian Show Ground.  My rest was fitful and I awoke several times to relieve myself: I must return to taking that homeopathic remedy to reduce my night time trips to the bathroom.

I ventured downstairs around four to see if a mug of chamomile tea would help me get further rest.  When I checked on Maureen, I found her awake and distressed.  She had returned to a theme of the previous day of: ‘people wanting her to dress up in rags’.  She told me she was ‘so pleased to see me’.  After listening for quite some time to her concern about ‘being bullied into wearing inappropriate clothing’  I managed to ease her upstairs with the promise of a cup of tea.

Once we were in our bedroom I found clothing in her wardrobe that could be worn today.  She was so relieved that there was something to wear and she ‘didn’t have to follow the other students and dress up in rags’.

Whilst lying on the bed  Maureen waxed lyrical about her days at High School where her feelings about being different to other people were highlighted. This is a familiar theme of ‘not feeling as good as the other pupils because her parents didn’t have much money’.  It took a while to shift her thinking and accept that she didn’t always have to play by the rules and could be her own mistress.

There is no doubt that playing some of our old favourites via YouTube on my mobile played a significant part in elevating her mood.  She also seemed excited by the prospect of UB40  serenading us in our back garden from 9 pm tonight:

We would have been at Meridian Showground ourselves tonight if UB40 hadn’t split up.  In my view, Ali Campbell is the voice of UB 40 and his brother Donald can never replace him.

My early morning antics have tired Maureen out and by 6 am she told me she needed further sleep.  I sent ONS home a couple of hours early once the kettle was boiling.  She left with a smile on her face before giving me a wink and telling me to ‘just go for it’.  I certainly did and I have no idea what will happen when Maureen wakes or what she will decide to wear today!

 

Dementia: Special Measures

Mixed Dementia, Uncategorized, , ,

 

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On Thursday things went from bad to worse as the day progressed:

  •  Girl Thursday advised me it was her last shift as she needed to change her working hours.
  • The Alzheimer’s Society told me that I would no longer be able to access my Support Worker as we did not fit into their Pathway.
  • Maureen presentation became more challenging and it became difficult to persuade her to remain in the house.
  • Maureen was reluctant to cooperate with a Duty Worker from Focus Adult Social Care and told her to ‘get out of my house’.

The Duty Worker and I agreed that the option of a Respite Break where Maureen would be placed in a Care Home would not be in Maureen’s Best Interests.  We were both reluctant to chance going down a slippery path that could lead to Maureen becoming a permanent resident of a Care Home.  Fortunately, I managed to buy some time on our options by engaging a Night Sitter (Girl Tuesday Afternoon) who I booked from 9 pm until 7 am.

Sleep came easily to me once I hit the pillow shortly after the arrival of Girl Thursday Night.  Three hours later I awoke for a toilet break and checked on proceeding downstairs to find Maureen awake and in a combative mood.  However, feeling refreshed I managed to ease GTN out of the firing line to explore her availability for the next few days.

I now have a Holding Position for the next few days with some ‘Special Measures’ in place and some aspirations pending.  They reflect the decision of the Best Interest Meeting with Maureen staying at home along with some additional support:

  • GTN has been booked for Night Sits tonight and the following Monday, Wednesday and Friday.
  •  I will request an induction process for two new carers who will cover four shifts next week.
  • I will explore if it is possible for the support I have been receiving from the Alzheimer’s Society to continue while we are in Special Measures.

I hope that Girl Friday is able to work her magic this morning and become ‘Maureen’s hairdresser’ once again.  She has been on holiday for three weeks and I’m optimistic there will not be any hangover from her last when Maureen ordered her out of the house because she suspected we were having an affair!

 

Dementia: SOS

Mixed Dementia, ,

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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: Enough Is Enough

Mixed Dementia,

Our builders knew that a storm was on the way yesterday and adjusted their plans accordingly.  They knew it would be pointless trying to lay bricks and sought safer ground to prevent being washed out on site.  If only I had such a luxury as a Care Partner and knew what lay ahead each day and could plan accordingly.

We had a lovely start to yesterday with an early morning call at the Spa Stores followed by a trip to a nearby farm to collect eggs.  Following breakfast, we ventured to Aldi and on to Freeman Stree Market to stock up on fruit and vegetables.  Once we arrived home the clouds descended and the storm broke over Maureen’s footwear as I had ‘stolen her shoes’.  The abuse connected with my felony continued until Girl Tuesday afternoon took over the reins as I escaped the downpour.

‘The weather’ in the evening cleared a little leading to a fine spell following haddock and potato wedges: my Tuesday Special.  Things brightened up even further with a warm spell following apricots and ice cream.  Then the clouds gathered before the storm broke following my encouragement to bring a new toothbrush into action as darkness descended upon us.  As the rain poured down I took shelter in the back bedroom to escape the torrent of abuse from Maureen about my expectation that she would join me in bed.

I’m struggling to make sense of the forecast this morning.  Maureen’s presentation is bewildering as she ‘has to make some clothes for a carnival’: apparently, something she is not good at.  I have tried to change her focus for over an hour but she is overwhelmed by her inadequacies on all sorts of fronts.

I would suspect that ‘the weather’ is going to be changeable today and I’m hoping for some brighter spells.  The builders will shortly be firming up the foundations for our extension. I hope I have laid the foundations for our morning by putting Maureen’s dancing gear on the bed.  I’m just wondering after tripping the light fantastic in the kitchen whether we could make it see our friends at Social Dancing this morning. ‘Enough Is Enough’ of the old regime it’s time to try something different.  How lovely it would be to take my Dancing Queen in hold this morning: