Dementia: Early Start For April Fools’ Day

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Maureen called time on our April Fools’ Party at 3.30 this morning by bedding down on the sofa once more.  We’ve had a bit of a rave here; listening to some of our favourite music on YouTube since 1.30 am.  If you pop across to my Good Music page you will get a feel for our rave.  Hope you have seen April Fools’ Day in with a bang: I got her early on with ‘there’s a foot of snow outside’.

I would have been ‘the fool’ if my gamble of going to bed at 10.30 last night had caused a problem.  Maureen wanted to stay downstairs as she had been in bed most of the day.  I managed 3 hours rest and found her standing in the dining room looking dazed.  I wished I could have taken a photo as her dress sense was appropriate for a cool morning with heating switched off:  draped in purple a blanket with a scarf around her neck she looked a treat.

The Home Treatment Team will be here at 2 pm today to begin their assessment of our situation.  Our social worker and my Admiral Nurse pulled out all the stops yesterday to move things along.  We are very fortunate to have support from such dedicated staff.  Questions remain about certain procedures and protocols that make it difficult for them to adhere to the Local Authority’s aspirations ‘to look after their carers’.  I intend to comment on these systemic shortcomings in appropriate arenas. I am hoping that constructive suggestions will lead to positive outcomes for both professional staff and carers.

I have an appointment with my G P this morning to consider the best way to protect my well-being.  It alarmed me when I looked back and realised that since Maureen’s stroke I have had one week’s holiday and one night off in two years.  I’d better not tell my brothers and sisters in the trade union movement: they’d take my card off me.  What a shame there isn’t trade union to address the exploitation of Care Partners

It was a lovely day here in Cleethorpes yesterday and I managed to potter in the garden whenever the opportunity arose.  What a pleasure it is to be outside in the fresh air after what seems to have been a very long winter long winter.

 

Dementia: ‘Call It A Crisis Then’

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There has been a fair amount of activity since handing in my notice this morning.

It would be unfair to detail this morning’s telephone exchanges with professional staff.

Just to make matters easier I have declared I’m in crisis trying to support Maureen’s current presentation.  My understanding is that this will make a referral to the Home Treatment Team more straightforward; as they are a crisis intervention team.  It is also a realistic assessment my ability to continue to provide adequate care and maintain my own wellbeing

It is not my intention to post any further detail on Maureen’s presentation.  If I haven’t outlined how difficult things are at the moment I never will.  What I intend to Blog about in the next few weeks is how things move forward as I attempt to develop a life of my own alongside being a Care Partner.

Dementia: Giving A Month’s Notice

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At 10.30 tomorrow morning I intended to give a month’s notice that I am no longer prepared to be Maureen’s Care Partner under the current arrangements.  I am posting this information because there is no guarantee I will be able to make the meeting with my Admiral Nurse and G P.  Despite assurances yesterday the Care Agency have not confirmed there will be adequate care in place for Maureen tomorrow morning.

Yesterday was the straw that finally broke this Care Partner’s back.  My visit to the Care Agency confirmed my worst fears: they don’t understand dementia and are working within procedures that are not fit for purpose 

I am giving notice because I love my wife.  The current arrangements for support place an unworkable burden on me and cannot be sustained.  We are both entitled to a much better support than this under the Care Act. 

On the first of May if workable arrangements have not been put in place I will remove myself to a place of safety until they are. 

Dementia: Tempted To Throw The Towel In

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Today is one of those days when I feel tempted to throw the towel in and walk away from my role as Care Partner to my wife.  The ‘last straw’ is realising that our Care Agency are not Dementia Friendly: in fact I’m coming to the conclusion that they don’t understand the condition at all.

I’ve spent this morning, once again, trying to paper over the cracks in their set up.  The new Care Plan is now in situ as I have collected it from their offices.  However, when I’m told that new carers are expected to familiarise themselves with it on arrival I begin to get worried.  Then when I establish that they are quite happy to saddle us with a carer on Friday who was counterproductive on her last visit I begin to despair.

The new Agency continues to claim they have teething problems since their takeover from the previous incumbent.  From what I’ve seen and heard they need root canal treatment. There is trouble in the camp from their staff making complaints within earshot that their leave requests are not being sanctioned.  I’m already aware of bad feeling from the imposition of the new contract with a reduction in enhanced rates for week-end working.

When I arrive home I watch the excellent Gail in action allowing Maureen to put out the washing unaided: it takes her half an hour.  Chloe will be back on Monday and Maureen won’t allow anyone else but her ‘hairdresser’ to help her in the shower.  That is on good days. It has been about a month now since Maureen felt warm water all over her body: despite Chloe’s attempts to coax her into the cubicle on every visit.

There are suggestions that the Care Sector is on the verge of collapse as it tries to implement the Living Wage.  I know that feeling: carers can’t get their leave sanctioned – I wish there was even a process for me to put in an application for a decent break.

The dedication of Chloe and Gail never continues to amaze me.  They are treated poorly in an industry that is on the verge of collapse.  It is possible that their employer is being pushed over the cliff by a Local Authority wrestling with the demands of diminishing resources.  I feel ready to throw the towel in: trying to continually sort out dysfunctional organisation is exhausting.

It is fortunate that my meeting with our G P and my Admiral Nurse is less than 48 hours way.   Unless the involvement of the Home Treatment Team is on the horizon and leads to some postive changes in the support we receive the only towel that needs to be used here won’t be Maureen’s bath towel.

Dementia: Between A Rock and A Hard Place

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I’m drafting this post early in the morning once again.  It’s difficult to get back to sleep after seeing Maureen so disturbed.  At 2.30 this morning she shouted out my name as she thought someone was trying to open her bedroom door.  I should be used to this by now but her behaviour once I joined her puzzled me.  She stared into space for long periods of time and asked me when Chloe, our carer, would be coming.

Maureen is doing just what I have asked her to do whenever she is frightened: to call out ‘Paul’ at the top of her voice.  What I am not sure about this morning is who she thinks I am.  I would speculate from her behaviour that she doesn’t think I’m her husband.

I managed to have a chat with my Admiral Nurse yesterday afternoon.  Mel made the point that I’m often ‘between a rock and a hard place’.  Where to sleep puts me in that uncomfortable position every night.  On some nights Maureen makes it explicit that I belong in the spare room.  This means leaving her alone to face her night-time demons. My shoulder problems add to our difficulties as it is easier to be pain free if I have bed to myself and can move around freely.

When we sleep together I’m immediately on hand if Maureen becomes frightened.  If I’m in the spare room I sleep with one ear to the ground ready to move next door if the shout for me is made.  So I’m always between the spare room and the marital bed: a hard place to get much needed sleep!

Dementia: Honesty, Fear and Confusion

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This post will be brief after an exhausting night.  We went to bed early last night as we were both very tired.  Before we turned in Maureen shared her fears that I would leave her because I would get fed with her always being tired and ill.  During the night she has been up three times frightened by things around her.

She shot out of bed around 11 pm frightened that she was late getting up.  When she went downstairs she saw a dog in the lounge and a man at our front door.  After further sleep she was out of bed again frightened that there was a cat in our bedroom.  A few hours later she was complaining that she was cold and had no clothes to wear.

We were drinking tea in bed an hour ago and she was talking about how she had lost her memory.  She shared, for the first time, that sometimes she didn’t know who I was and wondered if other people knew she had lost her memory.  I listened repeating my mantra: that her recovery from stroke is continuing and how her incredible efforts are making such a difference.

I am hoping that Maureen will be able to rest a little longer.  With luck she will remember two things I have suggested we try to do today:  set some flower seed and walk to nearby ‘Leading Labels’ where she might be able to choose some new clothes.

I am forwarding this post to our G P and my Admiral Nurse in preparation for our meeting on Friday..

Dementia: Looking Back: Looking Ahead (Week 12)

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I am only going to look back four hours to outline how Maureen is at the moment and the challenges that face me as her Care Partner.  She went downstairs at 2 am to make a drink and came back ten minutes later saying she was frightened because ‘the others weren’t there’.  She asked if I would make her a cup of tea as she ‘didn’t like being downstairs by herself’.

When we were sitting in bed drinking tea she asked me ‘if I knew how to help her get her memory back’.  She continued on with this theme for some time eventually deciding that improvements are taking place all the time.  After listening to her for some time, and making supportive comments I suggested we should try to get back to sleep.  I’m pretty sure Maureen drifted off shortly after my hand left the light switch.

My guess would be that Maureen will have forgotten her thoughts when she wakes a little later.  In fact she has just joined me as I type saying she ‘is looking for her mum’.  I’m not sure she knows who I am as I encourage her to rest a while longer before I bring her a cup of tea..  

I’m hoping the forthcoming involvement of the Home Treatment Team will make the next stage of our journey a little easier.  Friday’s scheduled meeting with my Admiral Nurse and G P will be an opportunity to make sure that Maureen’s referral is moving in the right direction.

 

Dementia: ‘Things Are Looking Up’

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Yesterday was a good day despite Maureen being tired after her evening with Clarice: she said her aunty never stopped talking while I was out watching the Sky Blues on T V.  I wouldn’t be at all surprised as her uncle Dennis and I often used to say ‘listen to them they are like a couple of teenagers when they get together’.  Despite needing plenty of rest she responded well to the new regime.

Early on I thought my new plans were doomed to failure when I asked her to stir the porridge.  She did it begrudgingly: grumbling about it being my job.  Then she announced that she had never liked porridge and said she didn’t want any.  One of the things I have learned is that ‘no’ often means ‘not now’, and a few minutes later she was at the table with spoon in hand.

Maureen was eager to help with the preparation of a very late lunch.  She worked well peeling and chopping vegetables with minimal help.  We were both delighted with the meal and my raspberry surprise for sweet hit the spot.  I knew I’d be onto a winner with using her favourite fruit.

As dusk set in I suggested a late shopping expedition into Cleethorpes.  Once again I turned a ‘no’ into a yes persuading her that we would be able to park right outside the Frozen Food shop.  Once inside I knew I had backed a winner as we came across an old face that Maureen is particularly fond of.  Lisa was lovely with Maureen and kept her arm around her as they chatted on the banks of the freezers.  I am pretty sure Lisa’s speech difficulties bring back happy memories of one of Maureen’s aunties who was deaf and dumb.

I am not intending to get carried away with the positive signs from yesterday: one swallow does not make a summer.  It’s a case once again of Maureen’s advice of ‘slowly, slowly catchee monkey’ and if I keep my nerve our journey might become a little brighter than it has been for a while.

As night followed day I got a stark reminder that Mrs Dementia is never far away.  Maureen appeared at the top of the stairs at 11.15pm as I sat at the keyboard.   She had woken from napping on the sofa and was worried that she is late for school or some other appointment.  I did my best to reassure her that it is Saturday night and she hasn’t missed anything.  Mrs Dementia is struggling to make sense of her world and stared at me in disbelief – I don’t think she knew who I was.

My efforts to persuade Mrs Dementia that it is time for bed fail.   She is very unpleasant and dismissive of any of my suggestion to help.  She decided to spend the night on the sofa: I eventually left her to it and bedded down in the spare room.    As I finish this post I have no idea if I’ll be dealing with Maureen, or Mrs Dementia, when the woman in our lounge eventually rises from the sofa.

Dementia: Time For Change

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I think I’ve been kidding myself for the last few weeks.  My view was that if I provided additional support to Maureen she would get through a rough patch that she seemed to be going through. What I am failing to accept is that dementia is a progressive condition that saps the life out of all involved.  I need to take a fresh look at our lives and find a practical way forward.

In my efforts to support Maureen I’m trying to compensate for her dwindling functional capacity by doing things for her.  This is counter-productive and is deskilling her.  The fact that it is quicker for me to do things is not the point.  I need to sit back as she struggles to find the missing whatever: rather run to her rescue.   The Celebrity Chef needs to involve her in choosing and creating meals.  It’s amazing how I have forgotten ‘use it or lose it’ in striving to have a peaceful life.  Waiting on Maureen hand and foot is accpeting a ‘sick mentality’ where she can’t do this and that because of her condition.

I also need to back-track on the revised arrangements for carer support.  Reducing ‘sits’ down to two hours would be a mistake: they need to be elongated rather than shortened.  I need more time for myself not less – staying in whilst carers are here is not helping anyone.  My life alongside being a Care Partner is my responsibility: I need to create it! 

It will take a while to get the new regime into place and I will have to take any negative reactions from Maureen on the chin and plod on.  ‘All Change’ as they say when you get to the end of  part of your journey.

Dementia: Maternal Instincts

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Maureen’s emotional memory remains intact; whilst her short-term memory is shot: a familiar tale with dementia.  You only have to see her in a maternal role to see that she is still the ‘full shilling’ in that mode.  When she is in the company of young children she comes into her own and has no misgivings about getting things wrong.   Whenever either of her sons comes to see her she goes into hostess mode to convince them that her stroke recovery is well underway.

She must have gone into overdrive yesterday when her youngest son popped in for a couple of hours.  He said that she never stopped talking: since he went she has never stopped sleeping!  It’s been over 24 hours since his departure and she’s been asleep for most of the time.  She keeps telling me that she is tired and all she wants to do is sleep.  I have learned in the past to ‘let sleeping dogs lie’.  Usually it takes three days to recover from a visit of her sons.   Maureen has long forgotten that her son came yesterday and has no idea what has caused her exhaustion.