Yesterday heralded a new beginning oin my role as a Care Partner for Maureen. For once I am going to have a Support Plan for myself.  This seems preferable to the fudge I have endured from the past where a joint plan has been seen as expedient.

It was the first time I had met  Gary, my new social worker, and  I was impressed with the professionalism with which he guided me through the Carers Assessment process.  I am going to request that he remains as my social worker: it is time for a fresh start.

Gary will forward a draft of the Support Plan to me shortly.  It will become a vehicle for me to develop a life of my own alongside being Maureen’s Care Partner.  One of the immediate priorities will be introducing Maureen to Day Care at Royal Court Care Home on Tuesday’s and Thursday’s. This will give me a day to do my own thing rather than a couple of hours which is a feature of the past.

We are hoping that once Maureen settles to the routines of Royal Court opportunities for significant respite, with overnight stays, will emerge.  This is preferable to Agencies struggling to source home- based care while I try to steal a couple of nights off duty.

I’m excited by the prospect of having a life of my own once again.  It is time to think of myself and my own aspirations, rather than focusing exclusively on the needs of someone who has dementia.  I am confident that I have the necessary support available to enable me to make brave choices at this juncture in my life.

Maureen showed signs of capacity yesterday that I feared were gone forever.  She made herself a cup of coffee without any prompting and also put washing on the line.  I need to be very patient today providing prompting at appropriate times to support her to find purpose in her day.

There is no doubt that as exceptional support has arrived from Focus and Navigo I have felt a little more relaxed in my caring role.  We are very fortunate in the range, and quality of support, that is available here.  Unfortunately, there is never enough money to go around and like anywhere else professional staff are pushed to the limit by the Austerity Programme.

I have already improved the layout in our lounge/bedroom this morning.  What I had hastily thrown together yesterday helped us both to have a better night with comfort at hand whenever Maureen awoke.  Unfortunately she is still very nervous following her experiences in Ladysmith Road Care Home and I have some unfinished business in that quarter which I hope to progress next week..

A new carer is her at noon from the same Agency as last weekend.  If she is half the woman of her predecessor then it can only help, as Dianne was great.  She is back next week so one more piece is now in place in a jigsaw of support that can only help as we move forward on this hazardous journey.

Today’s To Do List:

1. Carer (Chloe) to encourage Maureen to shower and wash her hair.
2. To assist Maureen to put washing on the line.
3. To convert our lounge to double as a bedroom for two.
4. Confirmation of weekend Carer Sits.
5.  Reclaim Chloe our most experienced carer for Monday morning.
6. To progress deadlines from Carers Assessment E Mail.
7. Play lots of music particularly Immortality and others on today’s Good Music page.
8. Meditate
9. Tai Chi in the garden.
10. Gardening: tidy up borders and vegetable plot.

We’re already off to a flyer this morning with Maureen making her own coffee for the first time for a while.  I’m confident with prompting she will put washing on the line shortly.

One of the things I’m learning is to pick my moment: to know when to leave things until another time.

I’m meeting our social worker at 11.30 am this morning to complete my Carers Assessment

If I am to have a life of my own alongside being Maureen’s Care Partner my shopping list of aspirations is as follows:

• Daily 3 hour sits from 1o am until 1 pm with a regular team of Carers.
• Maureen to attend Day Care from 10 am until 5 am, ideally for two days a week, at Royal Court Care Home.  Provisionally from week commencing Monday 22nd August.
• One trip a month to visit family in Coventry or London with care from 7 am until 9.30 pm.  Next trip Friday 19th August
• Three days of respite a month for Buddhist Retreats, at the Madhyamaka Centre in Pocklington, with wall to wall care from 7 am on the first day until 6 pm on the third.  Next trip Monday 5th September onwards.
• Professional support to continue to be provided by Focus, Admiral Nursing, the Home Treatment Team and Clee Medical Centre.
• Family members to commit to scheduled visits (needs coordination).
• Daily meditation by following teachings on YouTube and reading.
• Regular attendance at Tai Chi classes.
• Regular attendance at Cleethorpes Leisure Centre.
• To continue to grow vegetables and use gardening as ‘in house therapy’.
• To meet my Lifelong Learning needs through On Line Courses.
• To remain a card holding (inactive) member of the Labour Party.
• To reinvigorate my role as a volunteer with the local Dementia Engagement Project.
• To continue blogging my experiences as a Care Partner.
• To continue following the fortunes of Coventry City via Sky Blue Player.

Two important principles: no more vagaries from me and all arrangements for care to be reliable and sustainable. Time also for me to reflect on the Serenity Prayer:

Edit: Social worker off sick so the meeting is cancelled.

Maureen often walks around the garden and on her final stretch holds onto the washing line as she completes her circuit.  I have now stuck a copy of this photo onto the marital bedroom door to help her identify it as a safe place to sleep.

It is important to avoid her feeling that she is ever locked in so I have told her where we keep keys for the front and back doors.  Hopefully this will help her to retain a semblance of independence: it’s her house so she should have access to keys.  When she goes out by herself she is looking for me; which is fundamentally different to aimless wandering.  When I know I’m going to be out of sight I take two precautionary measures; switching on the Baby Monitor and leaving  details of my whereabouts on a whiteboard.

Just to be on the safe side I resumed camping  on the lounge floor last night.  My new system worked as I ushered Maureen up to her room at 1 am  and she clearly liked having her photograph on the bedroom door.

We have spent the last couple of hours listening to YouTube.  When I put on our Songbird

I saw the sadness in Maureen’s eyes: she misses Maeve as she is the only living contact with Denise, her departed daughter.  My mission today is to see if I can get Maeve to visit ASAP and also that ‘Top Dude’ nephew of mine.   Maureen often talks about the lovely time she had showing Tim around the place – she is his ‘Favourite Lady’ but he says that to all the girls!  Family contact is rather sparse at the moment but that seems to be par for the course when dementia is an unwelcome visitor.

I am hoping the progress we are making is a move in the direction of being taken out of Special Measures.  However I’m long enough in the tooth to know that one swallow doesn’t make a summer:  with vascular dementia you can only ever have a ‘Working Position’.

The ‘Newbie Carer’ was excellent yesterday and I haven’t heard Maureen laugh so much for ages.  Dianne and Maureen sat on a garden bench for a long time in fits of laughter; goodness knows what they were up to.  Dianne is back again at 10.30 am and I owe Gary, our replacement social worker, sincere thanks for sending such a cool carer our way.  If we can retain her on a regular basis we that will put a new perspective on weekends, as I will be able to pop out to have some further welcome time to myself.

Great News: the front door bell has just rang and Maureen is at the door.  She tells me she has just been out for a short walk around the block: Amazing Maureen!  She’s got the bug now and we are just off down to the beach…….

I hope to be able to revert to one post a day from now on.

Edit: The beach walk didn’t happen as Maureen decided she had already had a lot of exercise this morning.  Mike my neighbour tells me she has been walking up neighbours’ drives on her travels.  At 8 am she is asleep in bed: that photograph on the door seems to be helping!

I am exhausted after another night with little sleep.  Maureen is finding it difficult to rest because of the back pain she is still experiencing following her fall in Ladysmith Road Care Home.  I am hoping that paracetamol and pain relieving gel will help her to get a little more sleep: I have given up at 4 am after another interrupted night. and drafted this post.

My plans about a bed at The Royal Court Care Home are in tatters.  The room was excellent but we have now decided that the stairs present a risk to her safety.  My contingency is to see if Day Care is a viable option until a downstairs room becomes available.   There is a steep hurdle to be overcome before my aspirations for Maureen to have several hours at the Home over the weekend become a reality: shifting her off the sofa.

I am hoping that we can cajole Maureen to Royal Court on Friday for assessment.   There are ‘cunning plans’  in place with Chloe our carer,  Maureen’s son and the Home Treatment Team geared up to help ease Maureen from the sofa.  If things go well I could then have several hours to myself on the Saturday while she spends most of the morning and afternoon in their care. 

If this Saturday comes to fruition it could become a fixed feast and gradually extended to include a mid-week stay.  All we need is a little bit of luck and the direction on the next part of our journey becomes a little clearer:

I spoke to Social Work ‘Out of Ours’ at 4.30 am so our Key Worker would be aware of our plans as she switched on her computer this morning.  I took Aimee’s advice and managed another hour in bed before Maureen was up once again, this time needing a drink.  I’m hoping she will rest a while longer so that I can have a little time to myself.

My energy tank is empty and our G P (Doctor Munjal) and others are becoming increasingly concerned about the risk of Burn-Out:  an insatiable appetite; the inability to sleep; needing to pass water frequently; aching muscle groups are far from healthy signs.  Dr Munjal insists it is time to call for help with Maureen’s care – he will play his part if she resists our plans to ease her into Day Care. When I saw him about my exhaustion yesterday the Lucky Man told me he is going to Iceland on Monday for five days: what I would give for a break of that duration!

Lady Luck is already shining down on me this morning in Costa del Cleethorpes.  A warmer day offers all sorts of possibilities.  If I can only get Sleeping Beauty to the beach who knows what might happen.  One thing is sure sun burn is out of the question with the amount of lotion we have in stock: another reminder that dementia has been around for far longer than many thought!

It is probable I have uncovered a diamond amongst stones when  I made my second visit to a small Care Home in Cleethorpes yesterday.  I came away with a really positive feeling about the place.  Later this morning I will return for a further chat with the Manager.

One of my neighbours inspects Care Homes as an ‘Enter and View’ volunteer. He tipped me off that Royal Court Care Home was somewhere there was a high level of resident satisfaction.   John and I believe Care Homes would be better placed in the NHS but that seems unlikely at the moment.  

From my initial observations Royal Court would be a good place to consider for a significant Respite Break.  The room that is currently available is better than anything I have seen on my travels.   The whole place seems an ideal setting for someone of Maureen’s demeanour.

It is time to do something that I always struggle with:  park things that have gone wrong for a while and move on.  There is little point in wasting my energy on past events when I am so tired.  The dwindling energy that I have needs to be focused on creating an opportunity for a significant break so that I can deal with options for the future with a clear mind.

I have just returned from an appointment with Dr Munjal to discuss my sleep deprivation and Maureen’s presentation.  I will meet with him on Wednesday to give a progress report on my Carers Assessment meeting on Monday.  Then it has got even better with an E Mail confirming that a night sitter will be here from 10 pm until 7 am tonight.  It’s so helpful to have a Specialist Social Worker who understands dementia and goes the extra mile to support carers.  Hopefully I will be able to pack myself off in the spare room and leave the carer to support Maureen and get a good night’s sleep.

The services here reflect something that Margaret from the Home Treatment Team said to me yesterday: ‘you are not alone in this Paul’.  It is reassuring that there is so much support to call upon here: in  other areas of the country there is little or nothing.

It would be easy to slip into doom and gloom after another night with little sleep. Yet if I go with Bing there is much to celebrate:

• I persuaded Maureen to go to bed around midnight.
• She let me join her in the marital bed at 1.30 pm.
•  We celebrated her generosity in loaning ‘them’ her car so children could be taken out on trips.
• Maureen told me she liked me in bed with her.
• It’s a lovely morning in Costa del Cleethorpes.
• An early morning shower has eased my aches and pains.
• The pain from the tear in my rotator cuff has gone and I will not need an operation.
• I have managed to ease into a new pair of 38″ waist shorts this morning.
• I am meeting my Admiral Nurse tomorrow to review my approach to supporting Maureen.
• Care has been arranged so I can visit family in Coventry on Thursday.
•  Vegetables are growing well on my plot particularly tomatoes and kidney beans.
• Maureen is currently lying in bed singing ‘The Way We Were ‘ as she waits for a pot of tea to cool:

• We are going to have an enjoyable day together seeking opportunities to have fun.
• We are still with you on this one Bing!