Category Archives: Mixed Dementia

Dementia: Dreams and Reality

Mixed Dementia

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The times I really feel out of my depth here is when Maureen wakes up after a sleep.  Yesterday was a prime example of my struggle on this front as she awoke from her afternoon nap convinced that ‘her sister was missing in the water’.  It was one of those occasions when I decided it was advisable to challenge her reality by telling her that she had probably been dreaming as we hadn’t seen her sister for months.  I even suggested that she should make a phone call to confirm that her sibling was safely at home in Nottingham.  She replied that this would be pointless as she didn’t know where we were herself!

Our Key Worker contacted me yesterday to touch base after being on leave for over a week.  He was obviously concerned about the early morning events and wondered if such episodes were becoming more frequent.  He has also raised concerns about the back up that would be available for Our Night Sitter with my plans for her to be on duty for 48 hours in mid-August so that I can go to the Buddhist Centre in Pocklington. Therefore, we have agreed to have a catch-up meeting on Friday morning.

I’m very conscious that my Blog is becoming a place where I concentrate on the extremes of Maureen’s presentation.  The events of Monday morning meant that I didn’t share a very positive experience from Sunday morning.  With an LP by Roy Orbison on the deck, I decided to try a little art therapy.  As Maureen sang along with Roy she even added the ‘GRHH’ in Pretty Woman:

She coloured in a picture for a while and even wrote me a message. Unfortunately, the book that we were using has gone missing, so I can’t share her work. What was interesting was her that phonetic spelling of my name as ‘Parl’ and you as ‘yoo’.  I’m out of my depth trying to draw any conclusions from her writing.  What I do know is that playing familiar music in the background seemed to encourage Maureen to participate in new activities and is a strategy worth repeating.

 

 

Dementia: You’re Never Alone Here

Mixed Dementia,

Image result for Keep Calm You're Never Alone Picture

One of the advantages of living in North East Lincolnshire is that support is available 24/7 and I certainly needed it at 2 am this morning.  Maureen had already woken twice: at midnight searching for shoes that had been stolen, and an hour later trying to find her missing blanket.  By 2 am she was demanding to be let out as she was being kept here against her will.

Once outside she sought help by knocking on doors and shouting for help as she walked around the local area.  My call on my mobile to Single Point Of Access led to an assurance that help would be on its way as soon as it was available.

Maureen continued on her journey announcing to all and sundry that she was ‘being followed by a pervert’.  She was telling me in no uncertain manner that ‘I had problems with my head’.  I tried all I knew to get Maureen to go back home but as they say ‘she was having none of it ‘.  Then I spotted Jack a young man smoking at the side of his car and summoned his help.

Once I had explained the situation to Jack he introduced himself to Maureen and attempted to guide her back home.   I walked behind them for some time keeping a safe distance.  Then I received a call from Roving Night Carers from our Agency that they had us on their radar.  When they drew up  Maureen was hostile towards them and resisted their offer of a lift back home.   This gave me an opportunity to intervene; so I crossed the road said ‘hello Maureen’ and took her hand.   She seemed very relieved to see me and happy to escape from the ‘two nosy women who were asking her questions’.  The RNC trailed us in their car until Maureen was safely back home again.  However, once we were back in the house I was back to being this guy who messes with her life.

At 7 am Maureen woke up and greeted me with ‘hello Granddad’.  I think she thought I was ‘John-Willy’ as her maternal grandmother often called her husband.   I saw no point in challenging her reality and asking if he was ever known as Jack but I am very grateful to the stranger with that name who was so helpful last night!

 

Dementia: Having It Off

Mixed Dementia,

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After a very disturbed night, at silly ‘o’clock, I have decided to have a day off.

Girl Sunday will cook today’s lunch and it’s ready made pizza for tea.

All social media is being switched off for the next 24 hours.

I’m about to try to get some more sleep.

Have a good day.

Dementia: Seeing The Light

Mixed Dementia,

Image result for elderly man seeing the light picture

I went to bed shortly before 9 pm last night, leaving Maureen fast asleep on the sofa in our lounge.   As always, I left the landing light on hoping that it would lead Maureen to the marital bedroom later in the night.  My cunning plan worked and a few hours later I heard her coming up the stairs making for the bathroom.  Just to be on the safe side, I hastily made for the spare bedroom to try to avoid the issues of a ‘strange man’ in the bed.

I left Maureen to it for a while before attempting to ease her into bed.  However, she told me that ‘she would be in trouble with the school if she stayed in the bedroom’.  She sat on the bed for a while before going downstairs again.  I heard her close the door of the lounge so I decided to leave her to her own devices for a while.  An hour or so later I found her curled up on an armchair asleep.  When she stirred she told me she had been singing that I was The Wind Beneath Her Wings: then I got a short sharp shock.

Maureen hero was, in fact, her dad.  That became clear when she reminisced over my (his) generosity in funding a family holiday to France.  She went on to say she hoped I (he) had some photographs of a wonderful camping holiday.  Her confusion of people became even more evident when she pondered over whether ‘Paul had been the driver’. Then she decided he couldn’t have been but she was unsure who was!

As I drafted this post, Maureen appeared upstairs again announcing she ‘doesn’t want to go to school today’.  Apparently, it is ‘one of those dressing up days’ and she ‘doesn’t want to be involved’.

Whenever Maureen talks to me as if I am her dad I accept her reality.  She clearly has very fond memories of a wonderful father.  At other times I am supportive when she is sad about the tough life he had coping with epilepsy and trying to make ends meet. Her confusion about time, person, and place means I have to listen very intently throughout the day. to work out who she thinks I am.  If I don’t ‘see the light’ and make assumptions about my status I would find myself in real trouble when I try to persuade my wife to join me in bed or even risk asking her to take her pants off!

 

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: ‘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,

Image result for Tying Up Loose Ends Picture

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, ,

Image result for Heads-up picture

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!