It would be fair to say that the prospect of seeing her G P yesterday sent Maureen ‘off on one’  Ten minutes before we left for the appointment she was going to sort out her G P.  After all ‘why did he need to see her when she wasn’t ill?  Why was he wasting his time on her when people were dying?’  The lion was roaring as I nudged her into the car and helped her to fasten her seat belt.

Once with the good Dr Munjal the lamb came on the scene.  Mrs Angry remained in the car as Princess Charming stole the show.  Rav is superb with Maureen he treats her like an elderly relative and they shook hands even embraced as we left his consultation room.  We had both received good news all Maureen’s tests were in order, and my scan was set to take place early next month.

We both had a good afternoon siesta.  Then a bizarre exchange took place that is worth summarising.  Maureen announced that she couldn’t possibly go out for a walk as she had no suitable clothing.  I enquired what she needed and she replied everything.  Any solution I suggested to her clothing issue was rebutted by one difficulty or another: too tired to go out, no money, no proof that she has money in her account etc etc.

As I walked alone to buy some milk from a nearby shop I reflected on my approach to the clothing shortage.  I am beginning to think that I need a complete change of strategy: rather than trying to solve problems perhaps all I need to do is empathise with her distress.  I have spent hours trying to find suitable clothing to no avail.  Suggesting Maureen joins me on a shopping mission is equally unproductive. I am going to empathise from now on rather try to find solutions and see where this leads.

The Lioness came out roaring with delight in the evening as I called on Bing (Crosby) for support.   Whenever I put on the man YouTube you can  feel her joy as she remembers her dad singing this little gem to her.  Maureen then mentioned her fondness of Dean (Martin), and we sang along to some of his renditions.

When hunger took its toll I put some vinyl on, and we moved from YouTube in the lounge, onto vinyl in the dining room.  We  called in at the the kitchen, on the way, where the singing and dancing chef was in his element.  Following an evening meal our  ‘Singathon’  continued for a couple of hours.

 Anyone seeing ‘Maureen in Song’ would be amazed at the transformation.  Her enjoyment of the evening was so profound that she said we should have such evenings more often. The vinyl ranged from Johnny Nash, through to the Hollies, and finished with John Denver.

By 9pm the poor Lamb was exhausted by her efforts and had to be eased into bed.  She clearly struggled to know who I was after my role as a supporting act to so many stars.  That may well have been why she gave me a peck on the cheek, said goodnight, and shut the bedroom door firmly behind her.  However, my ‘cunning plan’ to join her at the first available opportunity worked.   Once the coast was clear, as soon as I heard early morning movement, I slipped into bed beside her.  What sort of Alpha male wouldn’t come to the rescue of Lamb in distress?   Anyway it’s rather cold, by yourself, in that back bedroom!

Footnote: When I returned from buying milk Maureen appeared to be contemplating making an ice cream sandwich.   She had a number of visible options for a sandwich filling but decided in the end she wasn’t hungry:  shame really as her concoction might have made an interesting addition to my Favourite Dishes page. 

NB. I must change the kettle today before Maureen has an accident.   It was boiling away with the lid off again yesterday!

Well blogging at 9.22 pm is a departure.  This is not part of a new shift system, it’s a pragmatic response to a challenging day.  It might also help me to stay in bed until after dawn in the morning.

Chloe played a blinder this morning.  She arrived on the dot at 10 am, briefed from my text, and soon had Maureen at her fingertips.  I listened from upstairs as she shared her experiences of her nephew’s christening the previous day.  At various intervals I heard her pose the hair washing question.  Her persistence paid off as I heard her suggest it would be easier to do it in the shower.  I took my leave so that Maureen would have privacy, and not feel threatened by any man in the house.  Towards noon I made a classic mistake, and nearly paid the price.

Once the ‘hairdresser’ had finished her work Maureen was anxious to send her on her way.  Chloe delayed as much as possible but eventually went along with Maureen’s wishes.  This led to Maureen panicking at all sorts of levels about our plans to attend her uncle’s funeral.  It took everything I had to get us to the crematorium as the service began.

We also made it for ‘afters’ at a pub a short distance from our house.  Once in the company of her family Maureen was surrounded by relations who wanted to ‘catch up’ with her.  There were many dodgy moments as some folk inexperienced in dementia committed cardinal sins of : ‘do you remember’ etc.  We were very fortunate that Debbie came to our rescue and shepherded Maureen to safety on several occasions: she has personal experience of the condition.

Three things come to mind from this afternoon.  Firstly, Maureen remains a very popular member of the family.  Lots of relatives have fond memories of Lilly and Jack’s daughter.  Secondly, unless you have cared for someone with dementia 24/7 there is little chance that you will understand how to interact with someone who has dementia.  Thirdly, Maureen is exhausted from the support she has tried to give to Clarice this afternoon.   She’s been in bed since 6 pm, and I expect her to sleep late into the morning.  I also expect it will take her a couple of days to recover from today’s strenuous efforts to put on a good show for the sake of the family.

I’m now typing away, shortly after 7 am, just to show how wrong I often am.  If I could really predict what’s going to happen here I’d better start doing the lottery.  How wrong I was about Maureen being out for the count.  I’ll just give a brief timeline on what followed.

10.30 pm:  Maureen woke up uncertain where she is and very frightened.  I joined her in bed and she drifted back to sleep.

1.30 am:  Maureen jumped out of bed with a start.  She looked out of the window to see if her car is on the drive.  Then she went downstairs and opened the front door.  I hot-foot it downstairs in case I need to follow her on walkabouts.  Thankfully she closed the door and Mrs Angry is letting off steam about being confined to this house.  She wants the people who drive her car to take her out of here:  she needs to get away after the day she had yesterday.

2.30 am:  Maureen lets me know that she is a grumpy old thing, and reassures me that none of this is my fault.

6.45 am:  Maureen is sobbing as she looks through her wardrobe.  She is unsure which  clothes are hers, as she doesn’t recognise any of them.  I take the blame for putting new things around without letting her know about my latest purchases: my nose grows as I tell yet another Love Lie!

Now: Enjoying the efforts of her Tea Boy in bed.

I am not really sure how we will spend today but there one thing I’m sure of, as I always tell Maureen: ‘we’re going to have a good day today’.

Any consideration of my posts for the last week would reveal the challenging nature of Maureen presentation.  Her general confusion has increased, and her emotional struggles continue.  Myself, and my fellow carers are also witnessing a significant decline in her functional ability: such tasks as laying the table, and washing up the pots are no longer within her grasp.  Maureen often addresses me, Chloe and, Gail, in the third person asking if we have any news of where we are.  She frequently thinks she is in hospital or a Care Home, and that her family don’t know where she is.  That is her rationalisation for the dwindling contact, in any form, from her immediate family.

The EMail copied from my Admiral Nurse, earlier in the week, outlines the consequences for me: it’s exhausting. Unfortunately, at a time when I am often on my knees, I need to up my game.   It’s possible that the need to repeat my blood tests last from week may reveal a health problem that needs to be addressed.  In the meantime there are a few things I can do to improve my own wellbeing: joining Maureen for siestas, and building short periods of meditation into my daily routines can only help.

Our focus for the coming week is to look for ways of addressing Maureen’s confusion. We need to introduce more routine into her environment, with fixed routines on most days. We  need to come up with a clear plan for the days that carers call.  I need to get my act together and stick to a fixed routine.

Maureen and I have already started making the home environment simpler for her to comprehend.  Yesterday we took down some old photographs of people that she no longer recognises: a case of out of sight out of mind.

I need to use the various whiteboards in the house extensively. They have to become the back up to Maureen’s poor short-term memory.  Whenever I’m out of sight I need to write down where I am, and what I am doing.

I’m hoping that a few simple changes in our environment will make life easier for us all.

My cyber friend Kate Swaffer has blogged that today is Dignity in Action Day and that:  “Dame Joan Bakewell, Dignity in Care Ambassador said:

“Dignity Action Day highlights a more respectful way of behaving towards vulnerable people. The very old and the very young clearly need our respect, but it wouldn’t do any harm to spread the dignity message across the population then we can all benefit.”

Supporting Dignity Action Day will:

• Raise awareness of the importance of Dignity in Care
• Provide someone with an extra special day
• Demonstrate that everybody in the community has a role to play in upholding Dignity in Care
• Remind the public that staff have a right to be treated with dignity and respect too
• Provide a great community networking opportunity.

I just hope Chloe will be able to persuade Maureen to have one of her Pamper Days.  

I will make sure that today, and every other day, is an extra special day for Maureen.

This week has been very challenging, and I am going to resist writing volumes summarising what has happened.  Instead I want to focus on an incident yesterday afternoon to highlight something of the current state of affairs.

All Maureen seemed to want to do yesterday was sleep.  I couldn’t prise he out of bed until after noon, and she ‘rested her eyes’ on the sofa several times during the day.  Towards the end of the afternoon I was tidying up in the kitchen whistling: ‘You Are My Sunshine’.  Suddenly Maureen rushed into the kitchen looking all flustered and said excitedly: ‘Is My Dad Here?’  Jack, Maureen’s father, has been dead for over 30 years.  The Good Music page explains the significance of this song. Whenever Maureen wakes up from resting her eyes; confusion abounds at one level or another. This time she quickly realised that her hopes could not be fulfilled.   

During the last week Maureen has often  been confused about time, place, and person.  This is nothing new but these periods are more frequent, and enduring.  It has often been difficult to persuade her to go to bed at night, as she wants to stay on the sofa.  She is frightened to go to bed by herself but anxious if I accompany her, when she is uncertain who I am. 

The ‘having no suitable clothes syndrome’ has once again reared its head with a vengeance.  Clothes are either missing, too tight or irritate.  This means that Maureen often returns to bed upset, and worn out, after a fruitless search for comfortable gear.  She feels that relatives who have long passed or those who have given up on helping her on this front, may resolve things: my efforts in the past week have been fruitless.   The amount of times I have trailed around the undies in Marks and Spencer have led to me being on first name terms with some of the assistants.

Another issue that keeps surfacing is Maureen thinking there are other people in the house.  For some time she has been enquiring about her Aunty Clarice and Uncle Dennis: now she often has concerns about children.  The other morning she wanted to know if they had already gone to school.  Then out of the blue one day she asked me where my son, Steven, had gone: we haven’t seen him for about three of years.  So a valid question indeed!

Maureen has been reluctant to venture outside in this cold snap, and her exercise in the last week has been restricted to the garden.  This means we have avoided the stress caused  by visiting supermarkets or relatives.  Maureen remains reluctant to make or receive telephone calls.  The only call she has taken this week resulted from a ‘cunning plan’ between myself, and her youngest son.  She has often talked of sending post cards to her grandchildren but these plans never come to fruition.

I have  had a couple of chats with Chloe and Gail this week about Maureen’s presentation. These are generally snatched conversations while Maureen is out of earshot.  The time has arrived when the three of us need to sit down to review how things are going, along with professional staff.  Things are changing rapidly and we need to discuss the most appropriate way forward.

On a personal note the rotator cuff in my left shoulder is not getting any better, despite further acupuncture,. My legs continue to give me grief.  One session at the Leisure Centre last week needs to be improved upon.  I have managed to slip in a few meditation sessions to good effect.  I have also spent the odd half  hour preparing my vegetable plot, and sorting out my seed trays

I’m really looking forward to Wednesday when I will be day tripping to Coventry to see my own family.  It’s good to have time relaxing on the coach, and ruminating on improvements that might be made at the home ranch.

I am convinced that we are all straying into very dangerous territory by not understanding Maureen’s reality.  Today’s post will reflect on my shortcomings in this area: tomorrow’s will deal with how significant others are having a similar problem.

My mistake is that I keep trying to take Maureen outside her comfort zone: I am creating discomfort rather than minimising it.  This point really came home to me early yesterday afternoon, when I dragged Maureen to Freeman Street Market.

When I look back the experience for Maureen must have been terrifying, and only served to remind her of her poor short-term memory.  I shudder when I think about how it must have felt to be in a strange place, with me chatting to people that she didn’t know: no wonder she often questions her sanity!

During my periods of depression I never realised how helpful this experience would become later in life.  It is fortunate that I met with Paul Martin my counsellor on Wednesday: something he said stopped me in my tracks.  He has always contended that my prime focus as Maureen’s Care Partner is to minimise distress.  However, he helped me to see that Maureen’s world is shrinking, and she needs the comfort of familiar surroundings.  Only the other day she said that she had ‘forgotten her way around our house’.  Sometimes she gets lost finding her way back to our bedroom, after a visit to the bathroom.

It has taken me a few days to let Paul’s message sink in: we need to stay local from now on. Local shops may be more expensive but we can no longer afford the distress that taking Maureen outside of her comfort zone causes.

When I think of my selfish thoughts about my forthcoming 70th birthday I cringe.  On what basis can I criticise the involvement of others in our lives, when I was thinking of us going to Portugal, to celebrate my three score years and ten?  Sometimes I think it is my sanity that is in question, rather than Maureen’s!