I have taken a number of measures to address the increased challenge of changes in Maureen’s presentation. Something has to give if I’m to have sufficient time and energy to meet Maureen’s needs.  I’ve decided  to drop out of a couple of distance learning courses on dementia.  I can use professional staff, the Alzheimer’s Reading Room, and Teepa’s Snow’s tutorials to address specific concerns as they arise.

I need to slow down on my attempts to make the house more Dementia Friendly.  My early morning assaults on various parts of the house have to stop.  Moving my clothes into the spare bedroom to help Maureen see that the front bedroom is hers will have to take its time. I have to learn to strike a balance between having a reasonable amount of rest and making the home environment more suited to Maureen’s needs.  Opportunities for day-time catch up rest need to be seized when the opportunity arises: I had a lovely couple of hours’ yesterday afternoon.

‘Maureen’s car’ will remain on the drive unless she needs me to take her somewhere or has given me permission to use it.

I have now requested that we shorten Monday and Wednesday’s carer sits by an hour, and have an additional two sit on Tuesday or Thursday.

My next away day has been pencilled in for April the 6th. We are going to review the arrangement for wall to wall care closer to the day, to address Maureen’s complaints about being ‘baby sat’.

We both need to have a health check with our G P.  It is possible that infection is causing changes in Maureen’s presentation.  I am always reassured that Dr Munjal keeps an open mind on additional medication being the answer to changes in presentation.  Current wisdom is that such medication should carry a  black box warning.

I need to chat to Dr Munjal about  my strategy to avoid surgery on my shoulder.  I also need to seek his advice on how to improve my sleep pattern and get more rest.

Our journey seems to be getting more arduous and we need to see if we can take an easier route.  We are fortunate that some of our advisers support our biopsychosocial approach to dementia.  I shudder to think what it must be like to have to deal with, and be surrounded by, those who are sticking to the biomedical model.

There have been marked changes in Maureen’s presentation during the last week.  Confusion has been rampant on many occasions, alongside real fears about men. Yesterday fear became terror as Maureen felt she was ‘losing her memory’ . The episode in the afternoon was repeated in the evening but my efforts to take Maureen ‘home’ were not as successful.  On return from the second trip of the day she said I had ‘ brought her back here again’, and ended up spending the early part of the night on the sofa as ‘she didn’t have a bed here’.  It seems likely that the days of sleeping together in the marital bed have gone: it’s the spare room for me from now on.

Once again I need to ‘up my game’ to cope with the Maureen’s reality, and explore additional support to cope with ongoing daily challenges. I have to continue providing Maureen with the level of support she clearly needs, and seek opportunities for respite from the ongoing challenge of this dreadful condition.  I will continue to post daily updates of how our journey progresses.

Good start to the day with a couple of hours making the house more dementia friendly.  I have disposed of some junk, and simplified the set up in the kitchen.  The early signs are Maureen thinks I am her husband this morning.  It will be interesting to see who she thinks I am on my return from the Leisure Centre when I offer her breakfast.

This afternoon marked a radical change in Maureen’s presentation: from fear to terror.  After we had prepared Sunday Lunch together she said ‘she needed to get back home as her husband would wonder where she had got to’.  I acccepted her reality and she told me that she lived in Coventry with her husband who was a long distance lorry driver.

She was pleased to accept my offer of a lift back home.  I drove around for a short while and she recognised where we lived as we neared home.  I let her into the house and bade her farewell as she entered our home.  She thanked me for the lift and waved me goodbye.

I returned home after a brief chat with my next door neighbours.  Maureen was pleased to see me as she was very frightened and said ‘she had lost her memory again’.  She complained that ‘the hospital had not told her how to get her memory back when she had lost it once before following stroke’. I gave her all the reassurance that I could think of and held her tight.

Maureen ate a good lunch and we watched televison for a while.  As I post this she is sleeping on the sofa.  I hope I am able to get some quality rest tonight.

This is the second night running that Maureen  became distressed and confused as she prepared to go to bed.  We had enjoyed a fairly good morning with  a long walk before lunch.  The afternoon and evening passed relatively peacefully, apart from Maureen saying  there was a little boy in the corner of our lounge watching us as we played a couple of table games..

Shortly after 10pm she came down from getting ready for bed and said ‘they were having a meeting to try to find a place for her in the Ladies Room’.  She said ‘she had to wait until they had finished the meeting before she knew where she was going to sleep’.  When I tried to help she told me firmly ‘that it was nothing to do with me, and I should go to bed’.

At around 11pm Maureen came upstairs and I  went to meet her as she arrived at the top of the stairs.  This was a silly mistake and caused her to screeam.    It took me a while to calm her down and assure her that there won’t be a man in her bed tonight.  She looked so distressed as she arranged her pillows and sorted out her bed.

I think it is fair to assume that Maureen continues to ‘time travel’ and is haunted by demons from her past.   The Clinical Psychologist from the Stroke Team warned me that Maureen’s fear of men was likely to resurface as her dementia progressed.  This is so difficult to deal with as Maureen is often unclear who I am, and may see me as someone who might cause her harm.  Trying to comfort someone at arms length is quite a challenge.  Hopefully she will remember that I am only a partition wall away and to yell at any time of the night if she needs me.

Maureen did remember where I was during the night and early this morning.  She popped in to see me around 2 am before going downstairs for a while.  I stayed in bed and listened as she returned to her bedroom and shut the door.  When the coast was clear I went downstairs and turned out the lights she had left on.  Two hours later she was on the move again walking from one area of the house to another.

I left Maureen to her roaming for a while and got up when I heard her crying.  She told me ‘she was lost and couldn’t find her way around the house’.  I carefully guided her back to her bed and things went quiet for a while until I heard her crying.   Then it all made sense to me when she said: ‘my mum’s gone downstairs’

When Maureen lived with her parents she shared a bedroom with her mum.  Her dad had epilepsy and slept in a room of his own to prevent his fits from harming his wife. Therefore it’s not surprising that Maureen is confused about where she sleeps: she can’t find her mum.

I’m hoping that the sun comes out again today, and we will be able to go for a walk. The Boating Lake and a play area for children is within walking distance. There’s nothing like watching little ones in the Sand Pit or on the Pirates Ship on a sunny afternoon.

Because of the events of last night today’s post is a departure from the normal routine of Saturday’s Sprinkle of Gratitude .

I have never seen Maureen so confused and frightened as she was last night.  She was very mixed up early this morning until she settled down with dawn on the horizon.  To keep matters brief I’ll use a time log to describe events as they unfolded:

9 pm

Maureen awoke after resting for an hour or so on the sofa.  All seemed well until she became very distressed during her bed time routines.  She began to ask me where the others had gone.  She wondered where my daughter’s were or the girls she used to play with.  Sobbing her heart out she eventually got into bed and pulled the sheets over her head.  As I was leaving the room she said ‘she wanted to get out of this place’.

1.30 am

I was awoken by Maureen crying in the front bedroom.  She seemed very distressed and welcomed me into the marital bed.  She went back to sleep quickly, and I returned to the comfort of the spare room: my painful shoulder seems better if I have a bed to myself at the moment

4 am

Maureen popped into the spare room enquiring if I had slept well, and if my shoulder was any better.  She told me she was going downstairs to make a drink.  I joined her ten minutes later to find her in a state of confusion.  The evidence that she struggles to make a cup of tea was everwhere.  Even with my assistance her efforts brought tears to my eyes: mugs, tea, milk and sugar all over the place.

6 am 

I have eased Maureen into her sleeping position on the sofa.  I imagine she will ‘rest her eyes’ for a while.  She has been very calm for the last hour and we have had great fun talking about all sorts of topics.  She is particularly taken at the moment with ‘when the NHS became free at the point of delivery’.

Conclusion:

Maureen was time travelling last night.  She spent some of her childhood in Cleethorpes.  Whenever she is with her aunties they talk of the great times they had together: sometimes 5 of them sharing a bed.

Maureen is frequently frightened when alone with a man at night.  Her concerns are understandable as fear of abuse never leaves the victim.

Maureen’s functional capacity continues to decline: making a cup of tea or a sandwich is no longer a simple matter.

It’s going to be a long day and it would be really nice if the Sky Blues got back to winning ways at Blackpool this afternoon.

This post is an update from last night’s –Whatever Next? – when Maureen told me she was waiting for her husband to come and take her home:

It didn’t take me long to settle her and to be seen as her husband again.  Just by chance I came downstairs singing a Bing Crosby song that her dad used to sing to her, and that did the trick.  Suddenly Maureen remembered who I was and was happy to go to bed.  She told me she was glad I was back as she had been wondering where I’d go to. Subconsciously I was working to the mantra of Paul Martin, my Counsellor, who has schooled me on how to ‘minimise distress’.  His tapping on the shoulder technique has worked wonders on many occasions.

I was referred to Paul by my G P.  He works at Clee Medical Centre on Wednesday’s.  He has his own Practice for the rest of the week.  Paul has helped me to ‘think my way out of depression’.   Without his help I may well have been on medication for life – the prescription of a Psychiatrist.

When I happened to mention to Paul that Maureen had dementia I didn’t believe my luck. His initial experience had been as a Mental Health Nurse working with patients who had dementia.

Last year during one of our sessions Paul asked me if I’d ever considered blogging.  I looked into his suggestion, and with the support of various people put my toe into the water.  His suggestion has been transformative, as blogging has become a cathartic pursuit. I’m amazed at the number of people from all around the world who continue to support us on this journey.  How fortunate I am that Paul Martin is on the staff of Clee Medical Centre.

I was also in touch with the Alzheimer’s Care Resource Centre in my hour of need.  They provided prompt advice to; stay calm and accept her reality.  Blogging and the Internet are such helpful resources as we travel on this journey.

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’.