Just after midnight Maureen appeared at my bedside and woke me up.  She had come looking for me after choosing to sleep alone in the marital bed.  It was clear that she was very frightened and confused by the events of the day: struggling to make sense of where her brother had gone and why we hadn’t all gone to sleep at her Aunty’s.  I joined her in the marital bed for a while but couldn’t sleep.  I lay awake thinking how plans that had emerged from my meeting with our Social Worker would not come to fruition.

Gary and I had hoped that Lindsey Hall Nursing Home would be able to take Maureen for a weeks Respite on Monday 3rd of October.  I quite understand their reluctance to come to my rescue and give this exhausted Care Partner a much-needed break.  Claire, the Dementia Manager, is taking a very responsible approach to Maureen’s introduction to Lindsey Hall.  As she says we want to help but need have to tread very tentatively and attempt to build up Maureen’s trust.

Claire has only met Maureen once but she has made a very important point about Maureen’s capacity fluctuating.  Some say that she is at the most difficult stage of dementia; with periods of lucidity within her presentation: don’t I know it!  However, her inability to apply logic and rational thought provides a very challenging context to any form of negotiations.

I have to be patient and fully understand the need for a cautious approach to Maureen’s introduction to Lindsey Hall.  Claire suggests a period of Day Care in a month or so when the Home begin to get up to speed.  This seems, to me, a very sensible approach with an opportunity that is too good to miss for a positive solution to much-needed respite.

As soon as Social Services open for business this morning I will be on the phone arranging a meeting with Gary to consider how we can organise alternative Respite for a week on Monday.  It’s now just after 2 am and Maureen is shouting for her mum and looking for missing footwear.  This cannot continue……..including Blogging at this time of the morning!

Maureen 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.

I have just arisen from a welcome afternoon siesta and I think Kris has it in a song.  I didn’t know where I was when I woke up.  It has taken a shower to help me ‘come round’. Goodness what it must be for Maureen every time she wakes after ‘resting her eyes’: no wonder she always thinks it’s a new day and time for breakfast!

I have just had a rude awakening concerning Maureen’s short-term memory.  Ian her son has just left after being here from 11.30 am and she has just asked me who he was. She says she has never met him before and thinks his name is William.  I suppose I shouldn’t be shocked by this as very early this morning she told me in no uncertain terms that ‘wives slept with their husbands and I wasn’t hers’.

Sue our social worker is off sick and Gary her replacement is in the process of organising the Best Interest Meeting.  I have now asked an Advocate to represent me at the meeting and made it clear to all parties what I think is the best way forward.  I’m hoping that Day Care at Royal Court along with periods of respite will relieve the pressure on me as her Care Partner.  The irony in all of this is that Tracey an earlier social worker asked me to explore Royal Court for Day Care quite some time ago and I never darkened their door!

If looks could kill I wouldn’t be around any longer as Maureen’s presentation continues to become more challenging.

I don’t think she knows who I am and she wants nothing to do with the meal I’m preparing, despite it being one of her favourites.

The Capacity Assessment by the Home Treatment Team has been delayed because they have been involved in crisis work all morning.  I hope they will be here this afternoon to carry out the assessment and advise me on the best response to Maureen’s presentation.

Sue our socail worker is trying to organise additional carer sits for the weekend.  I hope the weather is kind and I’ll be able to have a refreshing walk in the sunshine: little things mean a lot when Mrs Dementia has got one on her.

At 3 am this morning I contacted Single Point of Access (our 24 hour Help Line) to inform them that I was unwell and would not be able to keep Maureen safe.  They have agreed to alert Rapid Response who will contact us after 7 am to arrange an assessment of our situation.

Maureen says ‘she needs someone to look after her and feels unable to tend to my needs’ as my nose drips like a tap, my head aches and I am unsteady on my feet.  Her confusion is paramount as she tries to make sense of the situation: ‘in a place that she doesn’t know with no staff on duty’.

 My suggestion is she is supported to do what any wife would do when her husband is unwell: ‘help the old man to get back on his feet’.  This would avoid a repetition of the distress that was caused on a previous occasion when she was dropped off at a Day Centre when I was unwell.

I am posting a little earlier than normal this morning as I await from contact from Rapid Responders.