When I arrived home shortly before lunch Charlotte and Maureen were busy chatting in the garden.  I’m not really sure they noticed me taking this picture.  Charlotte is another excellent addition to our Care Team.  I guess she was telling Maureen about her recent holiday in Mexico as I carried on with preparing lunch.

I know that they hadn’t spent all the morning chatting as our ‘cunning plan’ had been carried out.  Three lovely outfits of Maureen’s choice now hang in her freshly aired wardrobe.

Charlotte played her deparure beautifully with: ‘I’ll pop in to see you next week when I’m around this way’.  You would never guess that she is hardly past her 21st birthday when you witness her understanding of dementia and the dignity with which she treats Maureen.

Maureen woke this morning crying that she wanted to go home as she doesn’t know anyone here.  I played it by ‘the book of dementia’ gave comfort and changed the subject.  With cold tea at her side I played on the fact that the one person she knew was letting her down.  What sort of a Tea Boy would serve his mistress cold tea in the morning I posed?  I then requested further training in the art of providing warm tea so the boss could drink my offering before she drifted back into the land of nod.

Once I had lightened things up I plunged into deeper waters.  It’s ‘Carnival Time’ here at the weekend and I suggested inviting folks to share the day with us.  From Maureen’s facial expression this is a ‘no no’ and I think I know why.  My guess would be that Maureen doesn’t want to put me to any trouble hosting visiting parties but it goes deeper than that.  In the last few days I have seen how reluctant she is to be in the company of others as it exposes her poor memory: too many folk are not dementia friendly and make her feel foolish or even that she is going mad.

I need to chat further to professional staff about the dangers of social isolation which could escalate as Maureen’s dementia progresses.  My telephone conversation with Gilly from the Home Treatment Team this morning, will provide an opportunity to discuss this dilemma.   There is no doubt that Maureen still has capacity at some levels but going along with her wishes to keep visitors, even close family, at bay may not be in her best interest.

Edit: I’ve just remembered I met Audrey one of our friends from Short Mat Bowls the other day.  She suggested how welcome we would be if we popped in to see them on any Tuesday evening..  Now I wonder if I can steer our evening walk in that direction tonight?

Further Edit: The other possibility is to persuade Maureen to accompany me to visit Mike, our neighbour, who is in hospital following a heart attack .

At yesterday’s morning meditation Kelsang Dorde made a simple point: ‘if you can’t change a situation: change your mind’.  He followed it up by saying: ‘it’s a no brainer’ and I teased him afterwards asking if he was quoting from our Spiritual Guide.

There is no doubt that Maureen is struggling to make sense of me leaving her for a couple of days.  Dementia has robbed her of logic and rational thought alongside her problems with short-term memory.  So she has no recollection of how claiming that the sofa is her bed and waking me night after night has exhausted me.  All she can remember that I left her with carers while I went away.

Last night she took to the sofa at 7 pm and woke at 1.30 am frightened by the noise from a dog in the street.  Once again I have struggled to get back to sleep as I have with the early morning recriminations about deserting my wife in her hour of need.

I’m hoping that some early morning meditation will allow me to quieten my mind so that kindness will take over from my current feelings of frustration with the behaviour of others in my absence and on my return.  As Dorde says ‘it’s a no brainer’: I simply have to change my mind rather than wasting my energy focusing on the behaviour of other people.

I realise I was using journalistic licence with my post yesterday: ‘Throwing The Towel In’. What I was articulating was that Maureen’s presentation was changing and I hadn’t got the energy to provide the support she needed.  As my infection now seems on its way out I also realise that I needed to review my approach to being her Care Partner to address the progression of her dementia.

It would take too long to outline the conversations and support I received yesterday as I tried to figure out a way forward on this journey.  Maureen slept for most of the day so that gave me the opportunity to chat things over with several members of our support team.  It also gave me time to respond top supportive comments on this Blog.   It was refreshing to meet Hannah from Hica, our Care Agency, who was pulling out all the stops to resource the care needed for the respite that I was requesting.

I think it is unlikely that Hannah will be able to find the carers needed at such short notice despite her hard work.  I will phone her first thing this morning to assess the situation and adjust my plans accordingly: my fall-back position will be a day trip to Coventry to catch up with my mum and brother to see how their dementia is progressing.

It’s amazing what a difference a good night’s sleep makes.  We slept together from midnight until 6 am: a welcome break from what has gone on in recent weeks.  I have Natalie from the Home Treatment Team to thank for this as our conversation earlier in the evening helped me to ‘get the message’.  At last I realise that I need to check where Maureen is in terms of orientation before I work out how to interact with her: little point in suggesting it is time for bed if she thinks I’m a stranger!  Having such skilled folk at the end of the phone is a luxury I simply couldn’t do without.

The ‘Tea Boy’ has already been on his rounds this morning and the first cuppa has been served.  There is a spring in his step this morning as his nose has stopped dripping at last.

The sun is hiding behind clouds this morning and I’m not sure if the washing will be able to put on the line but gradually I’m beginning to adjust to not knowing what is going to happen next: one of the certainties of dementia.

This morning I will be informing Sue our Social Worker that the current arrangements for me as a Care Partner are no longer sustainable: my well-being is now at risk.  Maureen’s presentation has become increasingly challenging and I have been further exhausted by her behaviour earlier this morning..

Maureen woke up around 1 am and launched into a personal attack: labelling me as a thief and much more for stealing her car.   The ‘attack’ lasted for some time before she stopped wandering around the house hurling insults in my direction.  It is never easy to get back to sleep after such events and today has been no exception.  Once she was back in bed I alerted Focus (Social Services) to the situation and had a supportive chat with Kirsten.

Maureen woke a couple of times later in the morning: clearly scared out of her wits. Fortunately, I was no longer the enemy and have been able to console her with tea along with reassurance that I will stay by her side and never leave her.  It was very disturbing to see how frightened  Maureen had become.  It is also challenging to know how to provide comfort as I have been warned of the dangers of  physical contact when Maureen is unsure who I am and may see me as yet another potential abuser.

When Sue starts her shift at 8.30 am I will be ‘throwing the towel in’.  I hope I am able to stay focused by reflecting on the poster from the Alzheimer’s Care Resource Center above.  My plan is to take respite (refuge) at the Buddhist Centre in York for a couple of days. If my recovery from this infection allows I hope to be in the company of Kelsang Dorde, Kelsang Chogma (pictured below) and their colleagues very soon.  It will be good to be surrounded by kindred spirits as I seek to rejuvenate a worn out sole and find the energy to continue on this unforgiving journey.

Edit: At 8.30 this morning Sue our social worker phoned to say she is already on the case trying to organise the care that I have requested so that I can get the respite I need.

I am beginning to feel that I’m on ‘Mission Impossible’ here: facing Carer Burnout. Yesterday I managed to have half an hour with Karen from the Home Treatment Team.  I have further meetings planned next week as I try to figure out a practical way forward on this journey that ensures my own well-being.

I will not be posting on any other pages on this blog for a while.

I realised that any attempt to attend the Armed Services Weekend in Cleethorpes would be futile.  The resort was expected to be very busy with large crowds expected: the opposite of what you need when you have dementia.  Maureen had walked out in the morning looking for me rather than Dodgy Dave as she had forgotten I was next door talking to a neighbour.  Fortunately I hopped on my bike and found her a few streets away and eased her back home.

I managed to wake Maureen from one of her many dozes just as the Red Arrows were in town.  Our vantage point from the greens Cleethorpes Golf Course at the rear of our house gave us an excellent view of their performance:

I managed to catch a glimpse of other aircraft from our garden as Maureen stayed asleep on the sofa.  Once again the Lancaster didn’t make it due to ongoing repairs to fuel tanks so I didn’t get chance to hear the ‘tum tum’ of those four Merlin engines as My Rear Gunner dad used to tell me about.

During the evening Maureen became distressed as she thought she had been left alone and locked in the house.  As I returned downstairs following a shower I found her very upset as she tried to make sense of ‘where the others had gone’. 

My attempts to encourage a walk late evening failed.  Maureen spent half an hour trying to find comfortable socks and shoes then retired to the sofa.  I tried everything I could think of to help her without success and eventually went out for a walk by myself always keeping our house in view.

It’s not looking good this morning as I bring up Maureen’s cup of tea: she is too hot and all clothing is too tight.  I’m wondering if this is one of those issues that you just can’t fix as Susan Macaulay alluded to in a recent comment.

We had a good day yesterday: a significant step forward in getting our lives and our home back.  I’m struggling to remember how we spent the morning so I guess it was pottering around the house and garden.  In the afternoon Maureen was checked out by our G P and a Practice Nurse.  It doesn’t look as though there is anything to worry about and a sample this morning will clear up any lingering doubts.

We had a great time in the evening pottering in the garden as we listened to music through the open patio doors. My neighbour happened to mention that Maureen had been singing away while she cleaned their window ledges.  I had no idea she had a money making scheme in mind to ease any cash flow problems.

I realise now that it has been a mistake to scarper as soon as carers arrive.  I failed to listen to Maureen’s assertion that she looked after me when I had been ill.  Goodness knows what it must have felt like as I ‘deserted her’ and left her with strangers.  Her call is not Mrs Dementia not wanting me out of her sight, it is: ‘where are you mate in my hour of need I was there for you’.

Gail will be here in a couple of hours to do her Wednesday sit.  Maureen likes being in the company of someone who is mature and lets her get on with doing her own thing.  As always the banter will fly around as I am outnumbered but I will take it as I potter in the house and garden.  Gail is good company and a welcome visitor in our home with family too busy to visit at the moment.

As I sit posting the latest news Maureen is singing this song as she waits for the first cup of the day to cool:

It’s another lovely morning and the blue sky’s the limit as we continue on this journey.