Dementia: Endless Sleep

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Trying to find  Maureen started yesterday, has continued through the night, and into this morning.  When I took the call from Royal Court yesterday I had to track her down in Cleethorpes.  During the night she has moved from her downstairs bed up to the marital bedroom and back down again.  The real positive from yesterday is that she now has a focus on us both getting plenty of sleep – which we did last night. I serenaded her with my version of this number a while ago to help make the point:

I have now spun the events of yesterday in a positive manner by going along with Maureen’s reality.  I’m pleased to say she is not against us both going back to that ‘nice place’ today.  I’m not at all surprised by her reaction as Royal Court is all that I anticipated it would be.  I know there is still mileage in my instinct that Royal Court could yet become an important part of our support package with its compassion approach to residents.

We will explore the potential for Lindsey Hall Nursing Home this morning.  I’m meeting the Dementia Manager at 10.30, along with our social worker, and am excited at seeing this state of the art approach to Residential Care.  The building has been converted from surplus accommodation of the secondary school that did me an incredible favour. Lindsey School was the nail in my coffin in my career as a Supply Teacher.  When I was escorted off the premises for having ‘issues with the school’ I resolved to call time on earning money in the cauldron of supply teaching – a decision I have never regretted.  How ironic that Lynsey could play a further significant part in our lives.

Footnote: I’ve just remembered Maureen and I saw Marty sing this song at Grimsby Auditorium a few years ago when we attended a Sixties Night – those were the days!

Dementia: Back To The Drawing Board

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Royal Court Care Home eventually decided they were unable to meet Maureen’s needs. She found a way out of their side entrance and became aggressive to staff who tried to persuade her to go back into the Home.  They tried to calm her down by taking her for a walk but she made off in a homeward direction and refused to leave the centre of Cleethorpes.

We have now been home for about three hours and she has settled down very quickly.  I have just woken after a couple of hours rest. Maureen is still sleeping.

It’s back to the drawing board tomorrow when I’m meeting our social worker at Lynsey Nursing Home: state of the art provision that opens for business for the first time on Monday.  Gary was very professional today as he skilfully tempted Maureen to give Royal Court a go – it’s a shame that things went pear shaped after she had eaten a good lunch!

 

 

 

Dementia: ‘Something’s Gotta Give’

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For the second morning in succession Maureen has woken shortly after midnight.  The accusations and the remonstrations continued for a while: she was threatening to report me to the police for keeping her here.  At one stage I thought she was going to hop it and hurriedly got my things together to trail her.

Later in the morning Maureen became very upset that none of her clothes felt comfortable or belonged to her.  I managed to ease her into bed for a short while but it wasn’t long before she was up again wandering about the house in a restless state.

It is fortunate I’m meeting Gary my social worker this morning, as we need to address Maureen’s current presentation.  I’m worn out and face Carer Burnout unless I can find some way of getting much needed rest.

Dementia: A Funny Day: A Dreadful Night

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Image result for A Funny Day An Awful Night PictureMaureen was looking for fun yesterday.  She spent quite a time in the morning and early afternoon trying to attach clothing pegs to my person.  Then she hid on a couple of occasions when she knew I was looking for her.  The surprising thing about all this activity was that she didn’t have a rest throughout the day.

In the afternoon Maureen’s brother phoned to let us know that he was planning a visit next week.  Barrie’s call led to confusion and concern about his visit.  I added to Maureen’s confusion by foolishly phoning her Aunty Clarice to clarify her whereabouts from the last few days.  Then I made a further mistake by encouraging Maureen to hear about Clarice’s adventures at Centre Parks.

Last night she spent ages getting ready for bed – repeating one routine after another.  I was very tired so I eventually took to the spare room in an effort to get some rest.  It is possible that I have paid very dearly for my impatience and my phone call to Clarice earlier.

At 1 am I heard activity from the marital bedroom – with doors and drawers being opened and shut. When I entered I found Maureen crying with despair as she sat on the bed.   Once again none of the clothes in the room belonged to her and they all smelled of perfume.  It took a while to encourage her to accompany me downstairs for a cup of tea.

The early morning challenges have continued with the usual routines of not living here and others stealing her belongings, alongside hostility towards me as the owner of this establishment.  We have both had several ‘breakfasts’ in an effort to cool things down a little.  Despite my exhaustion I have tried to fix a smile on my face and keep my communication simple: resisting the temptation to vent my frustration when I’m in ear shot.

As I prepare to despatch this post Maureen is crying again: ‘wanting to go home’ – my request for clarification reveals that she want to be with her mum, dad and siblings.  Then she says ‘we are all in the same boat here; we can’t go home until we get better’:  a smile is all I can manage as I am stumped for words on this one!

When Charlotte, today’s carer, arrives later this morning I’ll take off to the Leisure Centre: the prospect of lounging in the Sauna and Spa is a very attractive prospect .  I don’t think it is wise to attend an afternoon meditation session as I would be likely to drift off into sleep, and this would not be a good introduction to fellow participants.

The impact of false hope

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Kate Swaffer makes the point that we need to focus on dementia of all types and the importance of supporting those that have it, rather than concentrating on the latest hope about cures.

Kate Swaffer (she/her) Kaurna Country's avatar

Screen Shot 2016-09-04 at 12.05.36 PMFor my continuing series of World Alzheimer’s Month / Dementia Awareness Month 2016 #WAM2016 #DAM2016 blogs, the post today is about the impact of hearing and reading about possible cures, and failed research.

Members of Dementia Alliance International, and the much wider community of people with dementia and our families, are constantly being bombarded with this or that article or media release about an impending “cure or Alzheimer’s”.

Whilst it is good to read and hear about research, there is also a very negative impact of this constant stream of FALSE HOPE.

Considering many of us do not have dementia of the Alzheimer’s type, this is not only discouraging, but I wonder, will someone ever start to research our type of dementia more.

And we all know how much money has been spent on other terminal diseases and illness such as cancer, motor neurone disease and so on, and we also all…

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Dementia: On Target? (Week One)

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Image result for on target picturesI have decided that setting some weekly targets is one way of seeing if I’m really doing a good job as a Care Partner for my wife. One a day seems a sensible starting point.  This weeks seven are:

  • To smile more and communicate clearly
  • To visit family in Coventry
  • To have a day out together
  • To go out and leave Maureen to her own devices for an hour on two separate occasions
  • To revise and dance our routines to the Cha Cha in our Lounge
  • To encourage Maureen to do crosswords or jigsaws
  • To attempt to resolve Maureen’s shortage of clothing

 

Dementia: Practice What You Post!

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Image result for practice what you preach picturesYesterday was rather Autumnal here in Cleethorpes.  The rain came down in bucket loads for long periods of the day.  This meant that Maureen hardly ventured outside the door all day.

She had been very generous in the morning wanting me to do something for myself, so I popped down to the Leisure Centre for an hour.   Things didn’t go quite according to plan as the Pool was reserved for children, so I made for the Health Suite.  I took advantage of the Spa and Sauna to ease the pain in my shoulders.  It was good to feel the warmth on my body and have an interesting chat with a retired engineer who shared my views on the damage that Margaret Thatcher’s regime had done to manufacturing in Britain.

This morning I have struggled with Maureen’s constant question about ‘where is everyone else?’  Around 3 am she was asking about particular individuals, including her departed daughter.  Later on she seemed to be concerned that we were alone in ‘this place’.  It is easier to respond when it is still dark outside as I generally say: ‘they are asleep and we need to try to get some shut-eye’.

I’m getting a little better at not always absorbing Maureen’s challenging presentation.  However, on some occasions I lie awake thinking about how to respond when she is distressed when I would be better to park my thoughts and practice what I preach!

 

Dementia: Wrong Again!

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On Thursday afternoon our doorbell rang as Maureen and I were in the middle of our daily siesta.  Half asleep I made it to the door, rather scantily clad, to see some relatives of Maureen’s who we hadn’t seen for a while.  They live about 50 miles away and pop over to Cleethorpes occasionally to visit relatives who live in the area.

Maureen is a few years younger than her Aunty Elsie – they used to play together when they were children.  Her husband Ron is a ‘cockney card’ who has a soft spot for Maureen.  They had not seen Maureen for a while and would not have been aware of the extent that dementia has progressed since their last visit.  On occasions I winced as they interacted with Maureen, as they seemed far from dementia friendly in their conversation.  At one stage Ron waxed lyrical about his use of an I Pad and implored Maureen to get one.

Maureen made few comments after the visit of her relatives until yesterday evening.   As we were about to go to sleep last night she mentioned that she was going to write to her mother to say how pleased she was that family had visited.  She wanted her mum to know that her youngest sister had popped in to check on how her daughter was doing.  It was clear I had made the classic error of focusing on the content of conversation, rather than the good feeling that came about from a visit from family members.

Tom Schuller made a helpful comment on my post yesterday; helping me to recognise that Performance Appraisal is the issue.  I aim to make an incremental start on Self-Appraisal by resurrecting ‘Looking Back: Looking Ahead’ as the focus for my Posts on Monday’s.   We had a good day yesterday with Maureen in great humour: she locked me in the house early evening and returned shortly afterwards laughing her head off!

 

Remembering Richard Taylor

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As Kate Swaffer says in today’s post: : ‘Together, we can and will change the world for people with dementia’.

Kate Swaffer (she/her) Kaurna Country's avatar

Screen Shot 2015-08-11 at 8.12.22 amIn my series for Dementia Awareness Month 2016 #DAM2016 #WAM2016 of blogs, today again I continue to remember family and friends who are no longer with us, but who also were diagnosed with any type of a diagnosis of dementia.

Today I remember the late Richard Taylor Ph.D.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles 

Christopher Reeve

Richard Taylor continues to be one of my heroes.

I wrote this Haiku version of an Elegy about Richard which I read out at our online remembrance last year. So often, less is more.

Richard

Kind, intelligent
Passionate, real and feisty
Deepest heart and soul

In his final newsletter, he started with, “Hello, again. Still Richard here, still living with more and more symptoms of dementia I can’t seem to work around/overcome.”

Richard always began his videos and presentations with: “Hello. My name is…

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Dementia: ‘You’re Doing A Good Job’

Mixed Dementia

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I’m often told ‘you’re doing a good job’ as a Care Partner.  It is always nice to receive praise from other people but my professional background requires a little more than that.

I have no problem with my role as Maureen’s Care Partner being seen as a job.  It’s a straightforward way in which to explore my role.  Therefore I need a Job Description that defines my role and determines my duties.  I also need a mechanism for Performance Appraisal to help determine if I am actually ‘doing a good job’.  Perhaps, it is also time to put the performance of others under the spotlight to see if they are doing a good job in supporting us both.