We both had a good day yesterday.  I had a positive meeting in the morning with Gary my social worker.  Shortly afterwards I was discharged by St Hugh’s Hospital because, with Oliver’s exercise regime, I have managed a significant improvement in my left shoulder.

Our afternoon siesta was very restorative and we followed it with a lovely time in the centre of Cleethorpes.  Our mission to find an 18th Birthday Card was very successful thanks to supportive staff in the Card Factory. We then had a refreshing walk on Cleethorpes Pier and popped in to see Nigel the Clock Man to get a battery in Maureen’s watch.  As always we chatted to Nigel for a while about all sorts of things.

We took advantage of the sound purchases we had made earlier with Quorn Burgers for tea.  Then we overplayed ‘Hidey High’ and both dropped off until it was time to take to bed in our downstairs abode.  Following a bathroom visit at 3am we both retired to the marital bedroom where we slept fitfully until 5 am.  During this time Maureen has been repeatedly asking for her mum and wanting to go home.

Fred’s Story shows in graphic detail the daily struggles for anyone trying to support a loved one with dementia:

We might have had a good day yesterday but that has been long forgotten.  This morning Maureen is preoccupied with wanting her mum and to go home!

I’ve been using YouTube to try to lift Maureen’s spririts this morning.  My musical message to her has been quite simple:

We didn’t make our trip to Louth yesterday.  Once again the clothing crisis took its toll and Maureen spent large parts of the day sleeping off her frustration that her things had been stolen and replaced with unsuitable gear.  With time on my hands I pottered in the garden keeping in touch via the Baby Monitor. Maureen kept an eye on my progress by occasionally popping outside to check up on the Constant Gardener. Things went relatively well until complacency led me to put the cat amongst the pigeons.

Our up an over garage door has not been moving as it should for a while.  It took me a while to realise that the problem needed an expert and I arranged for the man to come on Thursday morning.  Then I wasted over an hour seeing if I could do the job myself and Maureen paid a heavy price.

Towards the end of the afternoon Maureen woke thinking she had been neglected all day.  She charged off into the street to tell others that she had not been fed or watered.  Fortunately, Kate our next door neighbour was returning from walking her dog and intervened to good effect by applying TLC; including ushering Maureen back home.  There are clear lesson from this saga: my days of DIY are over and out of sight is no longer out of mind when your wife has dementia!

Maureen woke at 3 am this morning in despair that she ‘didn’t like it here without her mum’.  YouTube has been applied liberally and she has sang beautifully to some old favourites.  She has also been fed and watered.  Breakfast will be supplied, on demand, when she next wakes – I can’t risk losing my reputation for ‘doing a good job’!

Maureen and I had very different days yesterday: she just couldn’t get comfortable; lots of people provided me with comfort.  Whilst I found support from all sorts of quarters Maureen couldn’t find anything that gave her what she was seeking.  I had a good day using my hands to do all sorts of things all Maureen could do was throw hers, and clothes, into the air in despair.

Chloe, our Carer, will be here at 1o am and my suggestion will be to make it a ‘Comfort Day’: to try to help Maureen find more suitable clothing.  I will leave them to it as Maureen is unlikely to want a man in the house as she tries on some of her outfits: although that didn’t seem to bother her yesterday evening when she sat topless eating sandwiches after off after throwing her sweater to the floor.  

Saturday and Sunday pose other possibilities as Dianne will be here for the second time. She made an immediate impact on her first visit a couple of weeks ago, so I’m optimistic that she can take up the slack if Chloe is unable to make much progress. Whatever happens there will be no repeat of an incident a month or so ago when an uncompromising Carer debagged Maureen, humiliating her in the process: that woman will never darken our door again.

It’s more work in the garden for me today as I try to fade into the background and let Chloe work her usual magic.  I wouldn’t make a living out relaying paving slabs but manual labour is good for the soul.

I’ve been up early this morning and I’m optimistic we are in for a better day.  Maureen seems exceptionally chirpy and has already put washing on the line.  As always I’ve played music to lift my mood and have posted four of my favourites on my Good Music page: I’d be interested to know what other Care Partners do when they need to lift their spirits.

I played a joke on Maureen yesterday afternoon by telling her I had to go to Coventry.  When she asked me if something was wrong I told her that yes there was: the Sky Blues had yet to score a goal in the League this season and they needed me to play as a centre forward tonight.  She got me back with a vengeance early this morning.  At 0ne’o’ clock she was on the move putting on the light in our lounge/bedroom.

As I came round I wondered if I was going to see a repetition of her behaviour at 10.30 pm when she opened the front door, went outside and was extremely confused about her whereabouts.   It had taken me some time to settle her after this episode; as she repeated that she had ‘lost her memory again’. Maureen always stresses that she ‘lost her memory short-term’.

Maureen’s presentation shortly after midnight was quite different to her moonlit appearance: she was in hysterics over one thing or another for about an hour before she drifted back into sleep.  I did manage to take a video clip of Maureen’s antics as she performed well for the camera.  Unfortunately, my WordPress Plan does not support video so my still was taken earlier in the evening when she had been singing along to Nat King Cole.

The rest of the morning has been far from funny as I’ve  had to play Musical Beds to try to address Maureen’s fears.  Her constant concern has been about other people being able to get into her room.  Eventually, I placed myself alongside her on the marital bed assuring her that she was safe with me by her side.

She had the giggles several times during yesterday afternoon but not as pronounced as this morning: such episodes may be a feature of dementia.   I have also seen her scared witless previously: particularly following her experiences in Ladysmith Road Care Home..  It will be interesting to see how she presents in the next 24 hours.  I will discuss her current presentation with Gary our social worker when we meet this morning for my Carers Assessment.  Some suggest the full moon impacts upon presentation and that could have been a trigger for the events of the last 12 hours.

One of my favourites from the Bee Gees brings this post to another a musical conclusion:

Maureen often wants to go back to the house where we used to live in Coventry.  I heard from my sister in law yesterday that would have meant we would have been five minutes away from the Nursing Home my brother is being moved into on the 15th of August.  It is a shame we won’t be near to John because my Big Brother is a good man.

The circumstances of his move are unpalatable: he has been given notice to quit his current Nursing Home.  The reason is quite simple – Jean his wife has raised questions about the level of care.  In the last month or so John has been plagued by oral thrush and nursing staff at his Home have been complacent about his condition.

John has advanced Alzheimer’s he is on Continuing Health Care and is no longer able to look after himself.  The price of Jean raising questions about his care: EVICTION!

How sad that elderly people who are not able to speak up for themselves are neglected.  It’s a shame we won’t be as close by as Maureen would have liked but I look forward to seeing my brother in his new Home as soon as possible.

Maureen’s mood is very low this morning but her depression is not a result of a chemical imbalance it is a healthy response to her environment.  How on earth could anyone expect her to be in good spirits after her experiences in the last week.  The solution is not to seek a chemical solution to her low mood it is to change her environment.  We are very fortunate that we are well aware of the work of Irving Kirsch and Peter Kinderman on the dated medical model to address low mood.

It always amazes me that Irving was at Hull when his pioneering research persuaded NICE to change their guidelines on the treatment of mild to moderate depression but the news has not made it across the Humber Bridge.  I speak from personal experience as a patient: told I had a chemical imbalance and needed antidepressants for life.  I also saw Maureen being told that if she admitted low mood the Memory Service would keep her on their caseload as they would be able to help her by prescribing antidepressants.

It isn’t rocket science to realise what is causing Maureen’s low mood this morning.  When she woke up she didn’t know where she was.  I had to abandon the Camp Site as she said this wasn’t a house as it was a junk yard: all traces have quickly been removed.  A couple of hours later she is in tears wanting to go home.  I have been robbed of a possible solution to that because her back is so painful from the incident in Ladysmith Road that travelling to see family in Nottingham is out of the question.  Then comes something that is really impacting upon her thinking: Maureen thinks she is in a Care Home this morning and her dreadful memories of last week dominate her thinking: ‘they are keeping us barely alive so they can charge us for being here.  

It is difficult to help Maureen change her mind set as dementia has robbed her of the ability to try the strategies that Paul Martin    has taught me to address low mood.  Tai chi is out of the question and the progression of her dementia may well mean that it is too late to learn to meditate.  So I am hoping that music will once again come to our rescue with Willie and Chris opening up with this message:

I think I may have been a tad liberal with the title of this post: farce is nearer to the mark.  When I was putting away the notes from the carer’s sit yesterday I found a Temporary Care Plan tucked into the folder of our normal Care Agency.  The worrying thing about this sheet of paper was that Kat the Senior Care Worker had filled out this pro forma with the comment that Maureen had mild cognitive impairment.

I was a little taken aback on Tuesday when Doctor Kokton diagnosed moderate to severe dementia .  What I find extremely concerning is that a Senior can pop in here for ten minutes or so and arrive at a very different diagnosis.  She also had the luxury of meeting and getting the low-down from Chloe our most experienced carer.   It is fortunate that Sarah did not read this unhelpful sheet of paper and tried to weigh up the situation herself.

The whole episode yesterday was a farce with Maureen continuing to think that some carers are here to check up on us.  This is a reasonable conclusion to come to when you are on the end of a battery of questions.

Sunday is a day of rest with carers banished from the house.  If anyone else rings up to come today the fabrication will continue: we’re going out!

Maureen remains bruised and broken from her experiences in Ladysmith Care Home.

She is now frightened if I’m out of sight fearing I have left her

Her G P will make a home visit around noon.

The Capacity Assessment has been postponed until she is well enough to have the best chance of demonstrating capacity.

This is the second time that respite has had a negatives outcome for my poor wife: she is now a shadow of her former self.

Maureen’s recollection of how she gained black eyes and hurt her back is consistent: she ‘fell of a trolley that was travelling at speed’.  She recollects colliding with a door as she fell to the floor.  The Care Home says she fell out of bed and they found her lying on the floor.

Last night was another story of sleep deprivation with Maureen frequently waking up in pain from her injuries.  I doubt I have had more than two hours’ continuous sleep.  This has become a habit that is very dangerous for my well-being and ability to be a supportive Care Partner.  On a couple of occasions yesterday Maureen picked up on my snappy mode and reacted accordingly fuelling a fire of tension that I had lit.

The dangers of Carers Burnout are increasing in tandem with Maureen’s deterioration.  This situation cannot continue without a price that neither of us can afford being paid.  If action isn’t taken today the Best Interest Meeting will be academic, as the next stage of our journey will already have taken an unfortunate turning.  I will be in contact with Sue our Social Worker this morning to confirm to our Care Package for the coming weeks..