I woke very early this morning racked with pain in my shoulders and legs.  When this happens I take a shower and usually the pain reduces or goes away completely.  As I dried off I heard Maureen crying in the bedroom.  I rushed in to find her upset that she thought she had been left alone just as others were preparing to go out on a trip in her car.

Maureen spent sometimes regaling the owners of this ‘Care Home’ or ‘Hospital’ for abusing the gift of her car.  Apparently they often used the car and never asked her to join them on days out.  Then she let out a familiar cry that: ‘no-one wants me’.  I assured her that I did and would never leave her.

When we talked about the death of her young son the other day Maureen told me how she tried to deal with her loss with dignity.  She mentioned that she wanted to be as dignified as the Royal Family were when they were dealing with loss of a loved one.  I think I witnessed a similar approach when her daughter died : few tears in public and a stiff upper lip.  Now Maureen’s dementia is out in the open she wears her heart on her sleeve and the tears flow.

Kate Swaffer calls her husband Pete her BUB – Back up Brain.  I have chosen to be ‘Maureen’s Batman’ alongside being her ‘Tea Boy’. If I am within sight Maureen feels safe: when she doesn’t know where I am she is frightened.  Little wonder someone who has always prided herself on her independence often gets down or feels she is a burden.

At 5.30 am I quickly don my uniform and go into action: hoping a cup of tea  might solve Maureen’s distress.  She went downstairs a short while ago and is incensed that there was no-one else there.  Nothing I say shifts her from: ‘I wouldn’t have come here if I had known’.   I’d better get dressed because she is threatening to go to her Auntie Clarice’s and my warning that ‘she’ll still be in bed’ may not stop her from walking out.  More later …..

It looks like the tea will end up as plant food, once again, because Maureen has now dropped off in a chair.  Sometimes she wonders if she is going mad but her memory loss is a welcome relief from what we experienced on our walk on the Prom last night.  We saw so many  people living in a virtual world searching for Pokemon characters.  Our final conversation was with with a mother and a teenage daughter where there was a crisis:  the youngster only had 1% battery left on her phone and the grown up was hot on the trail of Pikachu- I rest my case!

Maureen escapedthe clutches of the local ‘Neighbourhood Watch’ yesterday and fortunately ended up in safe hands. My back had only been turned for a few minutes and she hopped it.  I gave her some time, taking George Rook’s point that she doesn’t want to be treated like a child, then I got on my bike and searched for her in her normal haunts.  As I made my way back home after a fruitless search my Mobile rang with news of her whereabouts.

Maureen couldn’t have been in safer hands with her cousin Terry and his wife Glynn.  Both of their father’s had dementia so they know the condition well.  When Terry picked her up in his car she told him I  was sleeping.  She also said I rarely went out for walks and that was why she was on her own heading into Cleethorpes.  It wasn’t until I showed him the photo of our early morning walk that he realised the extent of her confabulation.

I couldn’t prise her from the sofa again last night when I retired shortly before 10 pm.  She woke around 11.30 pm and could see no reason why I shouldn’t join her in the marital bed.  Before retiring she took off the two pairs of trousers she has been wearing for days and put on her P J bottoms. 

Unfortunately I have only slept fitfully after moving beds: unable to shut down my thinking.  It’s difficult to accept that my few days respite is only a week away as I am feeling weary again from the constant demands here.  

Early this morning Maureen has once again shared her fear of strange men trying to get into her bed.   I have heeded the advice of the Clinical Psychologist from the Stroke Team and am being very careful about my behaviour in the bedroom.  However, despite the messages from my Buddhist friends about attachment it is not easy to Let Go of your wife and focus on being a Care Partner rathet than a husband.

Sue our social worker contacted me yesterday to confirm that the Agency is trying to accommodate a visit to Coventry in a week’s time.  I will be using public transport this time and hope the journey will be restful:  which was hardly the case on my last visit when I had to cope with Maureen’s mood swings whilst trying to navigate busy roads. 

Chloe our longest serving carer returns after her holiday this morning.  I think she will be surprised by the progression of Maureen’s dementia in the two weeks that she has been away.

Today I have a second message for our new Prime Minister: the Quality Statements for Home Care Workers from NICE do not go far enough:

List of quality statements

Statement 1. Older people using home care services have a home care plan that identifies how their personal priorities and outcomes will be met.

Statement 2. Older people using home care services have a home care plan that identifies how their home care provider will respond to missed or late visits.

Statement 3. Older people using home care services receive care from a consistent team of home care workers who are familiar with their needs.

Statement 4. Older people using home care services have visits of at least 30 minutes except when short visits for specific tasks or checks have been agreed as part of a wider package of support.

Statement 5. Older people using home care services have a review of the outcomes of their home care plan within 6 weeks of starting to use the service and then at least annually.

Statement 6. Home care providers have practice-based supervision discussions with home care workers at least every 3 months.

Have you any idea Theresa of the constant demands that Care Workers face?  They never know what they will find when they open the door of a client.  When they are dealing with dementia they are stretched to the limit with presentation that can change at the drop of a hat.

How on earth do we expect carers to care for the most vulnerable members of our society with as little as one weeks training and supervision every three months?

How do we expect to retain staff on the living wage, zero hour contacts, no time for travelling between calls and no in-service training?

Just one or two things for one of your new Ministers or Jeremy Hunt to consider, Teresa.

I will post news of developments here a little later.

Maureen has found her own solution to my complaints about sleeping on the sofa:

I think I’ll have to use music to get my point across: