I have mentioned before that Maureen often says to me: ‘what’s the plan Action Man ?’ Once I had the news from the Review Meeting: a diagnosis of moderate to severe dementia along with advice that a prolonged stay in the Care Home would be counter-productive I took on the mantel.

As I sat holding Maureen’s hand I saw the distress the chaotic atmosphere of the Orchid Suite was causing.  I realised what I needed to do: get her home as quickly as possible without upsetting anyone..

I do not have the space or energy to detail how I negotiated her early release from the Care Home.  It is fortunate that it is the start of the month and there was plenty of credit on my Mobile.  What I would like to do is pass on my thanks to all those people who gave us such excellent support in our hour of need: family support along with a local commitment to looking after carers and their loved ones shone through.

Maureen remains in considerable pain this morning.  Every time she moves in bed she is moaning in response to the discomfort she feels from her injured back.  It is fortunate that I cajoled her to have an x ray yesterday evening and we know that nothing untoward has happened.

We decided earlier this morning that today would be ‘Maureen’s Official Birthday’ as she didn’t have time or energy to open a single card yesterday.  Despite an early morning reminder she has forgotten that her youngest son Colin will be here later.

I was awoken at 2 am by a racket going on downstairs.  Maureen was shouting all sorts of abuse at someone who was’ holding her prisoner in a strange house’.  In short the night sit has not gone well and I have only had a couple of hours’ sleep; which is more than Maureen has had in the last 24 hours.

It is fortunate that the Care Agency sent such a skilled carer to do the night sit.  Sarah is relatively new to Home Care and she is a natural with her calm considered manner.  I hate to think what might have happened if Maureen had not been handled by such a skilled practitioner.

I do not have the time or energy to detail what went on from 2 am.  It took us a long time to calm Maureen down and we summoned support from a number of quarters.  She is totally exhausted now: medical intervention may be needed so that she can get some much needed rest.

I will speak to social services this morning to try to find a way forward that gives me the rest that I need so I can continue to look after Maureen in our own home.

It’s very hot here today in Cleethorpes and Maureen is struggling to cope with the heat.  So I’ve just found hints from Teepa Snow to take the heat out of the situation when ice creams no longer do the trick.

I have been asked to remove this post by my cyber friend Amazing Susan, who I have great respect for, as this information is already on her  Blog.

The heat must be getting to me to make such a silly mistake.

 It took me 12 hours yesterday to determine who had come to Maureen’s rescue at 5 am on Sunday morning.  As I was watering our front garden Dennis stopped by on his bike and mentioned that he was the kind soul that had seen her safely back home.  He lives 5 doors away and found Maureen ringing his doorbell saying she had been locked out.

The worrying aspect of this incident is that Maureen didn’t know who Dennis was when he popped to say hello as she sat in the garden yesterday afternoon.  After he had gone she asked me how I knew him because she didn’t know who he was.  In fact she had told me that Mike our neighbour had come to her rescue and I knew he was in hospital following a heart attack.

My concerns about Maureen’s functional capacity grew later in the evening.  As she tidied up the washing on the line she put 9 pegs on one of her T Shirts and made several strange adjustments to other items on the line.  This remains one of her favourite tasks and her efforts have to be seen to be believed.

I am also concerned about Maureen’s emotional state with anxiety almost a constant feature of her presentation.  This morning she once again shared her fear of me getting fed up and leaving her.  She is also concerned about her energy levels and fears she will never have enough energy to enjoy her life again.

I managed to speak to the Home Treatment Team yesterday and they have agreed to liaise with our social worker to determine who is best placed to carry out an assessment of Maureen’s current presentation.

I was awoken at 5 am this morning by voices from downstairs.  Maureen tells me that she had been out looking for me and Mike our neighbour had a key so he let her in.  I doubt her story as Mike is still in hospital awaiting tests following a heart attack.

It was a familiar tale last night with Maureen frightened of men and wanting to sleep alone.  My mistake was failing to set up the Baby Monitor before I took my place in the spare room.  Although I’m so tired at the moment I may well have slept through Maureen waking and going outside clad in her PJ’s looking for me.

Chloe and Gail, our main carers have both encouraged me to seek a further assessment of Maureen’s condition. There is little doubt that her dementia is continuing to progress and her poor short-term memory is now a major concern.

This morning was a Rude Awakening: it was also a Lucky Break.  Complacency and exhaustion put Maureen at risk and need to be addressed.

It is fortunate that a review of my Carers Assessment is only a week away.  I am aware that the Agency are under pressure to staff their calls this weekend so I won’t call for support today.  The time has arrived to call time on having no carer support at the weekend.  I also need to ask our G P to carry out a thorough assessment of Maureen’s presentation as her dementia progresses with no sign of a plateau.

Postscript: Teepa Snow encourages Care Partners to become detectives as they attempt to support their loved ones.  I will need to go on the beat as PC 70 (my initials and age) shortly to find, and thank, the kind soul who chaperoned Maureen back to our house at 5 am this morning.

I think it was Amazing Susan who reminded me a while ago that with dementia there are some things that you never solve.  I’m beginning to think sleep deprivation is now a way of life.  For three lovely nights I thought I had cracked it then ‘wham bam thank you mam’ its back with a vengeance.

When Gilly from the Home Treatment Team was with us at the weekend we discussed sleeping arrangements.  Maureen made it clear that she wanted to sleep by herself in what had been the marital bedroom.  So for three nights things have gone relatively well with Maureen making her way up to her bedroom at various times of  night after ‘resting her eyes on the sofa’.

Early this morning I gathered she was on the move as the Baby Monitor clicked into life followed by footsteps on the stairs.  So I called out to let Maureen know I was in the spare bedroom.  My usual enquiry if she was alright was met with ‘no I’m frightened about being by myself’.  I took a chance and joined her in the marital bed anticipating further rest: how wrong I was.

I hadn’t been with Maureen for long before she began sobbing.  As I tentatively provided physical comfort she told me she was thinking of the death of her baby over 50 years ago.  This is a story I have heard many times as she tries to deal with the way she dealt with her grief.  Her approach of putting on a brave face is similar to how I dealt with the death of my first wife.  Neither of us knew how to grieve when the death of a loved one came so early in our lives.

Tea has been served very early this morning: Maureen is now on her second pot.  She has now moved on to ‘wanting to go home’ suggesting that she needs to see her brother and sister in Nottingham.  My response as always is that we could pop across to the Midlands, walk by the Trent, and visit some old haunts.  Maureen says she is too tired to consider such an idea and I may return to this theme later in the day.  I think a change of scenery, even if it is Grimsby dock, may be just what the Care Partner ordered.  Watch this space……….

Edit: We’ve just returned for a lovely walk in the sun.  Whilst we were out I spotted this beauty: I would never have given up train spotting if I ‘d known there were models like that about!

I am totally exhausted after another night of sleep deprivation.  Our day had been relatively good with a positive visit from ‘Flexible Sue’ our social worker.  We chatted openly and honestly and Maureen told me afterwards she ‘liked that lady’.  Sue contacted me later in the day to confirm our meeting to review my Carers Assessment towards the end of July.

It is difficult for me to remember all of the events of the night, and early this morning:  there were so many twists and turns and my recollection of what happened when is hazy.  Once again Maureen decided to stay on the sofa as I retired to bed.  She eventually came upstairs and wanted the marital bedroom to herself.  Her behaviour towards me being in ‘her bed’ was hostile so I retreated to the spare bedroom.  Later in the night she joined me in the spare room.  Then she had periods of restlessness before she returned to bed.

Her attitude this morning has ranged from cool to unpleasant.   It is likely that she is as worn out as me by ‘Musical Beds’ and needs to catch up on sleep.

There is no carer sit this morning.  With Chloe our regular being on holiday the Agency had planned to send someone who was totally unsuitable to our needs.  I will contact ‘Flexible Sue’ as soon as the lines open to see if a sit can be arranged later in the day. It is not going to be possible for me to get through today without a carer sit at some time in the day: I need some time out.

Fortunately I will get some real respite from the challenges that I’m facing here over the weekend.  Jill my sister, and her husband Rob, will be here with lunch on Saturday. Rob has built up a unique business: if he can’t fix a hydraulics problem no-one can.  He has a canny ability to see the wood from the trees.  It will be good to be in the company of kindred spirits who despite considerable challenges within their own lives are never too busy to offer real support to a very tired 70 year old Care Partner.

One positive that has emerged from a difficult night is the thought of moving our bedroom.  The prospect from the spare bedroom is very soothing on the eye: we overlook a golf course and the windows are not leaded.  I think it is worth considering moving so we no longer wake up to the sadness of bungalows across the road where widows have a lonely old life: food for thought on a dismal morning here in Cleethorpes.

Edit at 8.30 am:

Thank goodness for BBC News to remind me of 100 years on from the Somme and here I was wallowing in my own trivial battles: hope I have put that right on my Good Music page.

Carers Assessment Needed

Maureen’s presentation continues to become increasingly challenging. She is now very distressed if I am out of sight; often believing that she has been locked in the house and left alone.  On occasions she will forget where I am and leave the house in a bid to find me. She has been extremely tired in the last few days and spends a lot of her time sleeping on the sofa.  Tests results should be back today and reveal if an infection is making life even more challenging for her.

I had given up trying to persuade Maureen to move from the sofa to the bedroom at night.   After last night’s performance I doubt I will try to move her again. When she is sleeping on the sofa the Baby Monitor usually wakes me well after midnight and with luck I manage to encourage her to join me in the marital bed.  However when my deep sleep is interrupted I find it difficult to nod off again and exhaustion follows.

Maureen is really struggling to know how to pass time; she has no hobbies and restricts her activities to minor household duties.  She can no longer read and gets little enjoyment from watching T V.  On some days she will respond well to my performance as a DJ and spend a considerable amount of time singing along to her favourite music.

Despite the warmer weather it is not easy to persuade Maureen to take exercise.  She often complains that her leg hurts, she has no suitable clothing or is simply too tired to go out.

 A Carers Assessment is needed to take account of changes in Maureen’s presentation and Luton have helpfully summarised the key issues: