Being a Care Partner for someone with dementia is a steep learning curve.  Dementia is an unrelenting teacher – get it wrong and  it’s unlikely you will get off with lines or detention.  I got it wrong yesterday, and paid the price.

My first mistake was to travel on Sunday.  On the way down to London Network Rail apologised that overnight work was causing us to run late.  Things were even worse on my return journey as no trains were going to Doncaster from Kings Cross because of problems with overhead cables.  Nipping across to St Pancrass added a couple of hours to my journey but at least I got home by eleven.

As soon as I walked in I sensed that little had changed since my departure.  Mrs Dementia looked sternly at me, and launched into a verbal tirade as soon as Sue had clocked off. There’s  little point in listing the accusations or her command of Anglo Saxon. Unfortunately, I couldn’t take her back to ‘where she lived’ as we were already there.

With the battle showing no sign of cooling down I summoned assistance from Rapid Response.  A little like a visit to the dentist the pain had eased when they arrived following trailing Maureen on a walk .  Fortunately, the stars were out at one in the morning, and the pavements were safe to walk on.

Later this morning and Mrs Dementia is in full flow once again.  Maureen is time travelling and confusing me with her ex-husband.  She is now repeating to  me,all those things she must have said to him at the dreadful time in her life.

Thankfully, Chloe our carer is here now.  We have just had a good chat about how rapidly Maureen’s condition is progressing.  We are so fortunate with the quality of our carers, and as always Chloe has helped me to put matters into perspective.

It’s a lovely sunny morning today in Cleethorpes.  I’m off shortly on ‘Shank’s Pony’: even with my hips it has to be a more reliable form of transport than British Rail!

A change of plan a post today after all:

When dementia first came into our family my response mirrors what has happened to Maureen and I.  I recall my brother acting rather strangely after my dad died. At that time I had no idea he had dementia. When mum was first diagnosed I made some awful gaffs, and may well have snubbed those who were on the spot day after day.  I try to remember my faltering attempts to come to terms with the condition, as some family members are nowtreading a similar path.   Yes I still get frustrated; even angry with their lack of understanding.  However, I then take a breath and remember that the only way to have any hope of understanding dementia is to have it staring you in the face; day after day.

One of the things I did when mum and John’s condition progressed was to enrol on a Distance Learning Course with Grimsby Institute.  The great thing about this course was that a seasoned professional commented on my answers.  Therefore, I had an ongoing dialogue as I tried to figure out how to be with mum and John.  My motivation to study was heightened by suspicions that Maureen was going the same way.  Only a couple of other family members had any sympathy with my view; others thought my suggestions were way off the mark: unfortunately they were wrong.

I have continued to attempt to grasp what it means to be a Care Partner to someone with dementia by: reading, through Forums, and exchanging with others in the same boat.  Even so when it came to telling Maureen that I would be going to London today I sought guidance from two of my mentors.

On Friday I talked it over with Chloe, our carer; yesterday with Kate our next door neighbour.  Both have extensive experience of the condition: Chloe professionally; Kate through caring for both her mother and father.  They both agreed that Saturday evening was the time to share the information with Maureen: they may well have been right.

I gave Maureen the news about my trip around 9 pm.  For about an hour she was very hostile, and angry.  Divorce was put forward as the solution if we weren’t a team any longer.  Maureen played every card in her hand as she struggled to deal with my wish to go it alone.  At times it was very unpleasant, and I realised she was probably talking to the previous incumbent rather than me: hence the suspicion, and doubting my motives.  I reeled from the attack for a while taking verbal blow after blow on the chin.   Eventually  I mentioned my concerns about my youngest daughter beeing unwell, and refusing any contact. I told Maureen that I wanted to talk to Anna about Esme.  This seemed to ally her concerns somewhat but pushed her into a guilt trip about me leaving my own family for her.

Something like an hour and a half after I had broken the news, things moved in a positive direction.  Maureen emerged from the kitchen in a different mode, and we went to bed.

At 2.30 this morning she sang lullabies for quite some time.  She told me something I already knew from the songs: she was singing to her dad.  After several renditions she asked me what time I had to be at the hospital this morning.  She thought today was my day for a scan on my shoulder.

A couple of hours later she was in floods of tears.  She was frightened that she was going to be by herself for the day.  My reassurance that she will have Sue with her all day  eased her concerns but she still felt desperate. Many of the old chestnuts  surfaced about money or ‘losing her marbles’.  I have never seen her so upset in my life.  I’m hoping that TLC and tea will help her get back to sleep.  It is tempting to call off my trip but that would only delay developing a life of my own alongside being a Care Partner.

It seems likely that we got it right over the timing of the news that I’m on an away day this morning.   Perhaps, I could have played it better last night, and pointed out that a carer would be with Maureen during my absence.  My hunch was that would have led to recriminations about ‘independence and being baby sat’.  There seemed little point in giving lots of notice, as that would have added to Maureen’s distress. If I had told her earlier it is likely she would have forgotten, and I would have had to go through it all again.

Maureen’s initial response to my trip was suspicion; that was to be expected: men can’t really be trusted in her experience.   After all even I’m not a good role model on that front, as Anna often reminds me ‘you left us, and ran off to be with Maureen’.

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.