Maureen and I both face the prospect that there are no quick fixes for the conditions that are having an impact on our lives.  There has never been a quick fix for Maureen following stroke: she has suffered brain injury and then has to deal with ‘Prescribed Disengagement’ .  The first Consultant she saw at the Memory Clinic put it bluntly: ‘you will have to learn to cope with the new reality’.

There is no quick fix for the torn tendon in my shoulder.  Some suggest surgery is a simple solution.  Others encourage me to stay away from the operating table as there is no guarantee of success.

The solution for both of us is to take more control of our own destiny.  We have to hold to our belief that the body can heal itself even the brain.  It’s another one of those situations where there is no gain without pain.  The only sensible approach is for us to put in the hard work that is needed to allow the body to recover from trauma.

Maureen is already singing in bed this morning, currently: ‘Cockeyed Optimist’.  I’m off to the Leisure Centre shortly to resume my exercise regime.  On we go as they say: we will overcome!

P.S.  I’ve already meditated this morning: must convert Maureen soon!

If there’s one thing that I could do at the moment that would really help Maureen it is to talk less and listen more.  Yesterday as I pressed ahead with solving the problems in my left shoulder I updated her after each phone call.  By the end of the day she was totally confused over what was going to happen next.  In fact she was so bewildered that she suggested we should take a tin out with us on our walk to collect money to help pay for surgery.

This morning I did more of the same.  Maureen asked her daily question, as she woke, about what I was going to do today.  Once again I did it again listing lots activities I had in mind, and left her totally confused.  All I needed to say was ‘potter around the house’.  What she needs to know is that I will be by her side all day.

So hopefully if I sing along with Joe today I’ll keep to my mantra of KISSSS.   His song might just remind me that Maureen is very frightened at the moment and needs reassurance that she is going to be safe.  She doesn’t need lots of complicated information about my shoulder or how I’m going to spend my day.

Many describe lives where dementia features as a journey. My experience with Andrew an osteopath yesterday may just help me to find my way a little better.  Andrew has a way with words, and often answers an enquiry with just one word: ‘correct’.  My appointment with him yesterday has encouraged me to reconsider the path I have taken on our journey, and set off on the ‘correct path’ again.

Ironically I got lost on my way to see Andrew in Hull yesterday.  On previous occasions I had seen him in Cleethorpes, and he had helped me to solve the problems I was having following hip replacements.  My appointment yesterday was to seek his opinion on what was causing problems with the rotator cuff in my left shoulder.  He concluded that I needed an ultra sound scan to confirm his assessment that I have a damaged tendon.

Andrews simple message to me yesterday was to get back to my routines that he had previously recommended.  The problems I was having with my hips were eased by walking in waist high water.  Once I addressed the muscle weakness in my glutes the pain melted away.  He had a similar message over my shoulder: I need to build in stretching exercises into my daily routine until the results of the scan are known.  Then it will be a medical judgement about steroid injection or repair.

When I asked Andrew’s advice on returning to tai chi, you could probably guess his answer by now: correct he responded.  He went on to remind me of the benefits of time out from being a Care Partner, and the need for social-interaction.  I know Andrew is right on these matters: even correct!

Maureen also took an interesting path on my return from Hull.  She told me how she had resented by being looked after by carers for four hours.  Once again she had tried to send Gail off early, reminding her how she had successfully raised three children whilst their father worked away, often over-night, as a long distance lorry driver. She decided to take herself off after a small snack, and returned 40 minutes later refreshed from her walk. Her description of her route was rather vague but she had apparently made it back home under her own steam, without the need for help.

It’s been a busy few days with several additions to our normal routines.  I’m hoping we can get back to ‘normal’ now.  I hope don’t get carried away againand ignore Maureen’s energy levels as I did on Tuesday.  Carer sits on Monday, Wednesday and Friday are obvious choices for initial steps on my correct path.  Once that route has been firmly trodden I hope to make daily exercise part of my routine.  Hopefully Maureen will buy into the exercise routine by accepting my need follow Andrew’s advice.  With luck she will join me on occasions as things settle down.  The real bonus is she has seen that she is at liberty to escape for a walk whenever she likes.  Now that really is a positive direction for her to take on our journey or as Andrew would say: a correct path!

When I decided to dedicate Monday’s post as a retrospective reflection on the previous week I had no idea if It would be something I would persevere with.  However, the Red Admiral is ‘not for turning’, for very good reason:  looking back works for me.  Firstly, it gives professional staff an opportunity to comment on my approach to being a Care Partner.  Secondly it gives me a moment to take a breath and think of a ‘shopping-list’ for the coming days

Mel, my Admiral Nurse, always finds time to comment, and make helpful suggestions.  I think this is more cost effective on our time, and means I get regular feedback on how I’m doing as a Care Partner.  She always closes her E mails with: ‘you know where I am if you need to talk’.  Her support is supplemented by Sue, our social worker, whose opening gambit is always: ‘how can we support you’.  She reflects Christine’s the Head of Casework’s message that: ‘we aim to look after carers’.

My day trip to Coventry on Wednesday may well have created the melting-pot for much of the dialogue between Maureen and myself in the last few days.  The shopping-list for the next few days has to reflect Maureen’s point about the Carers Invasion.  It would be foolhardy, in my opinion, to show them the door.  What we need to do is ‘knock them into shape’: the same as we all do with our offspring.  I want to make it perfectly clear here that none of this is a criticism of our adopted daughters: it’s a reflection on ‘poor parenting’.

Maureen and I need to get our act together and help our ‘children’ (carers) to grow.  It’s up to us to provide nurture to ensure that we are pleased to see the kids, and not wish they wouldn’t pop in so often.  Anyone know of any good Parent Craft Classes?

I have decided to use the title of a blog I follow as a way of saying something about my trip to Coventry yesterday.  Jennifer often begins her posts with: ‘I’m very grateful for…’  This brief post will take on a similar format:

I am very grateful that we now have a social worker who has made it possible for me to have away days to visit family.

I am very gratfeul that our Care Agency sends supportive carers to sit with Maureen.

I am very grateful that Maureen allows carers to sit with her for 14 hours.

I am very grateful that National Express provide reliable transport for my journey.

I am very grateful that my daughter Lisa transported me around Coventry.

I am very grateful that my sisters make sure my mum is well cared for.

I am very grateful that my mum’s carers look after her welfare.

I am very grateful that my brother’s carers look after his welfare.

I am very grateful that Maureen and I have decided that we will seek to avoid Residential Care for as long as we are able.

Finally, I am grateful that our social worker will be ringing me back after noon to arrange some additional carer sits over the next few days to help me cope with Maureen’s challenging presentation.

I’m very tired after a long day yesterday, and will write a reflective piece on my visit to Coventry tomorrow.

I think we made considerable progress yesterday with our plan to break the negative cycle of carer sits.  This is something that Sue, our social worker, had identified as something we needed to do.  Yesterday, Maureen and I planned things so that she didn’t feel that carers were here to ‘baby sit’ her, so I could go out and have fun.

Last Monday I made the mistake of scarpering almost as soon as Chloe, our carer, walked through the door.  I knew I had made a mistake when Maureen gave me the ‘cold shoulder’ as soon as I walked back in the house.  After all I had: ‘taken her car, gone out enjoying myself while she had been stuck in the house with Chloe’.  On it went for the rest of the day with real bitterness and hostility in the evening.

Yesterday morning was a lovely experience for us all.  We planned things in such a way that it was like having a visit from a helpful granddaughter.  Chloe and Maureen got on with household tasks, while I pottered around in the garden.  We took tea breaks together and had a lovely morning.

Around noon I prepared lunch as the women chatted away in the lounge.  At 1pm and we thanked Chloe for popping in to see us; knowing that she would be back on Friday.  Our afternoon siesta followed a hearty lunch, and the evening went almost to plan.

Around 9 pm Maureen was dropping off on the sofa, so we retired to bed shortly afterwards.  I deliberately tried to prevent her from sleeping downstairs, as that often results in difficulties when she wakes up not knowing where she is.

Planning and structuring our days with sensible routines is clearly the best way of achieving domestic harmony, with dementia around.  Yesterday was a small step towards breaking the cycle of Maureen’s reality being that: ‘I’m leaving her with carers so I can go off in her car and have fun by myself’.  My focus needs to be on minimising Maureen’s distress, and finding new ways of having fun together.

The other good thing about yesterday: Mel my, Admiral Nurse, responded to yesterday’s blog.  I knew she would and it’s good to see that my request for online support has kicked off.  It is so helpful to have comments on my review of the week: thanks Mel I really apprecaite your support!

On Tuesday when Sue our social worker was here she had a brief word with me after I had retired to the kitchen in frustration. She had gathered that I was a little fed up with Maureen going round in the same loop about me wanting to see mum.  Every time we tried to move things forward Maureen would try to divert us down a road to nowhere.  When Sue popped into the kitchen for a word she said: ‘we have to break the cycle’.  Her words are pertinent, and need to be extended throughout our approach to supporting Maureen.

There is no doubt that having Sue as our social worker has made a fundamental difference to our lives. As I have said before Sue exudes professionalism, and compassion: a fundamental difference from our previous experience of her Department.  I also realise, as my daughter Anna often reminds, me I have a tendency to be impatient: a shortcoming that is unhelpful when dementia is calling the tune.  Maureen’s adage of: ‘slowly slowly catchee monkey’ has to be my mantra: never mind my predisposition for getting things done.

If we are to ‘break the cycle’ we need to have strategies rather than plans with deadlines.  We need to help Maureen focus on what she can do, rather than concentrate on what she can’t.  We also need to have some sort of mechanism for keeping an eye on how things are going.  To start the ball rolling: from now on I will use Monday’s Blog as a review of the previous week.  This will provide an informal progress report, that I can forward to professional staff for comment. Looking back, and glimpsing a way forward, might just help us all to ‘break the cycle’.

One of the things I need in my role as Care Partner is on going feedback on my interventions.  If Maureen’s recovery from stroke, and dementia, is to be maximised a team approach is essential.  All team members need to have a mechanism for performance appraisal.

My participation in the Blogging 101 Course has challenged me to rethink the audience, and purpose, of this Blog.   It would really help to me if professional staff were able to use my Blog as a vehicle to comment, when appropriate, on my performance as a Care Partner.  On occasions I would like to forward certain Blogs to professional staff for comment.  I am not expecting our social worker, Admiral Nurse or G P to make their comments public: they can respond  privately by E Mail, when they have time.

I am hoping that this suggestion is helpful to us all.  It would give me supportive feedback, cut down on traffic, and keep meetings to a minimum.