I have just logged a formal complaint with our social worker against our Care Agency.  They have cancelled a carer sit this morning with no authority whatsoever.  At a time when I just needed a couple of hours to myself they have let me down.  In my opinion they are not fit for purpose in any shape or form.  This could never happen if they had any understanding of what it is like to be a Care Partner for someone with dementia.  From what I have seen and heard they would not pass any formal inspection by the Care Quality Commission: the sooner they are inspected the better!

Update: Replacement carer arrives an a hour and a quarter later: hope my date hasn’t given up on me!

After a hectic weekend it is important that we try to quieten things down a little.  Maureen needs to get as much rest as she needs.  This means we are discouraging visits from family members and seeking to keep contact to the bare minimum with the landline disconnected.  I’m hoping that this approach will be understood by family and friends alike.

It has now been confirmed that a Specialist Doctor will be visiting on Wednesday afternoon to continue the assessment of Maureen’s presentation.  I have also been assured that support from the Home Treatment team is only ever a phone call away.  It is commendable the lengths that NAVIGO, our Mental Health Service, go to help those with dementia to be able to remain in their own homes.

The changes that have been taking place in Maureen’s presentation have led us onto a new route on this journey.  We are now firmly back in the mix of the Memory Service.  Vascular dementia led to Maureen being discharged from the Memory Service over a year ago, as there is no treatment for the condition within the NHS.  Her current presentation has led to the involvement of the Rapid Response and Home Treatment Teams.

To an extent it feels like we have now been thrown a lifeline of support.  Whenever there is a crisis we can ask for support from the Rapid Response Team.  Our current situation will now become the focus of the Home Treatment Team.  They have skilled staff to help us to get through this sticky patch and advise us of the best route in the next stage of this journey.

I can sleep a little easier now that support is at hand.  We have both seen that rest is critical if we are to survive this journey in one piece.  Unfortunately, our afternoon siesta was interrupted yesterday afternoon by the arrival of a fire engine.  The crew had called earlier to arrange a safety check on our set up between 3 and 4 pm.  I hadn’t realised how attractive women were in uniform: particularly young blondes!  Just to be on the safe side she had brought two male hunks with her and Maureen said they were worth waking up for.

We are trying to solve the sleep issue with ‘go to bed when its dark don’t get up before its light’. It’s early days but if ‘resting eyes’ on the sofa is replaced by going to bed together as soon as it gets dark we are moving on.  We slept together again last night and that is real progress!

The next few days are going to be challenging for both of us. Further assessments of Maureen’s presentation are needed.  There will be lots of professional staff calling into our home to explore how our lives are at the moment.  It is fortunate that Chloe our longest serving carer is back from holiday today.  Her presence will play a significant part in settling Maureen: she has been puzzled by her non arrival every day during the last week

We are very fortunate that Kate and Mike live next door.  Their informed support is always on hand: they have both cared for parents with dementia.  Kate made an excellent suggestion yesterday that confirmed my thinking  about sleep deprivation.  She said: ‘you need to behave like a mother with a new born baby by taking rest when you can’.  Simple really and it helped Maureen to feel that she wasn’t ‘being lazy’ as I had a lie in as well this morning..

The sun is out here today in all sorts of ways.  You wouldn’t believe the change in the weather and the transformation in Maureen’s presentation this morning.  Early days I know but if I control the environment today there is a chance that we will have a good day.  Maureen is so pleased that Chloe, one of our carers, is back form holiday.  She is also relieved I have discouraged  anyone else calling at the house today.  She said she felt she was staying in a hotel yesterday with all the comings and goings: I’m not surprised.

It is so reassuring that the Home Treatment Team do not work with the ‘medical model’.  How refreshing to have support from professional staff who have a much wider perspective on how to support families where dementia is impacting on their lives.  We are so fortunate to have a rapid Response Team and a Home Treatment Team who help aim to make care in the community a reality.

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.