Dementai: ‘London Lagged’

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I have never travelled far enough on a plane to be jet lagged but this morning I am ‘London Lagged’.   It was lovely to see my daughter yesterday and we had a great time together.  We had a good lunch and then we walked and talked for the afternoon.  Inevitably we talked about her siblings, alongside conversations about all sorts of things.  Anna is a very interesting woman and great company: I’m proud that she is my daughter.

Maureen was in bed on my return so I practically had 24 hours away from my role as Care Partner.  I used my time away to recharge my batteries and reflect on how to progress things at home.  During my journey I read a little more about neuroplasticity and how the brain can heal itself..

My feelings this morning remind me of returning to work after a holiday.   However, there is far more in my thoughts than happy memories of time away from the ‘coal face’.  As soon as Maureen woke this morning  I was confronted with the fact that she doesn’t know who I am.  She talks to me about Paul: ‘that he went to London last weekend’.  Then her questions revolve around ‘what’s happening in Coventry’.  I try to listen very closely and it appears she has no recollection that her son was here yesterday.  Later in the conversation she talks about her ‘memory loss and not being the full shilling’.  I could go on……..

I think I need to end this post by emptying  some of the traffic in my head and list my thoughts:

  • I need to take stock to listen for a day or two
  • I am neo Buddhist surrounded by non believers in cause and effect
  • We are on the receiving end of a resources led model of care and support
  • I need to broaden my understanding of neuroplasticity
  • The simplest thing to do at the moment is to seek to minimise distress

I plan to elaborate on some of the points in the above list later in the morning

After any holiday it takes a while to get back into the swing of things.  I just need to take a breath for a day or two before deciding the nexts steps on our journey.  Time for more reading, reflection and an exchange with our supporters.

Dementia: ‘I Feel Like A Prisoner’

General,

I am posting earlier this morning as I will be leaving for London in an hour.

It is a sobering experience listening to your wife telling you that: ‘she feels like a prisoner in her own home’.  Yesterday morning Maureen was at pains to explain to me how she felt: ‘locked in and no longer able to come and go as she pleased’. I fully accept her feelings on this matter and am trying to address her concerns in a number of ways.vector illustration of a female convict behind bars....... bars are contained in clipping mask - stock vector

My intial response has been to explain the caution that has been applied to her recovery from stroke.  How we have all been very concerned to minimise risks, as she moved from feeling her way around, to finding her way around.  I also admitted that my anxious behavior had not always helped: panicking and calling the police on a couple of occasions has been a little over the top. Later in the day I tried another approach to attempt to help ‘the prisoner relinquish her bonds’.

Have to break off from posting this blog as I can hear shouts from upstairs.  Thankfully all is well but Maureen has been dreaming that she is being chased by an Alsatian.  I may not have mentioned before that she is frightened of dogs, as she remembers one attacking her mum when she was a small child.  So back to the prisoner issue ……

As the sun was shining yesterday afternoon I suggested that Maureen might go out for a while by herself.  I said I would leave her to go off for a while by herself.  I reassured her that if I thought she had been gone for too long I would come and find her.  For whatever reason she decided that she didn’t want to go out at that particular time.

I know that some of my colleagues on Talking Point will shake their heads at my approach to Maureen’s concerns.  I can fully understand their response to what might be seen as a reckless approach to Maureen’s welfare.  However , I would contend that my proposal is the next logical step in Maureen’s recovery from stroke.  She clearly needs to see that ‘my money is where my mouth is’.  I cannot keep saying: ‘she is making an incredible recovery from stroke’ and keep the chains in place.  Every day, and in every way, I have to keep repeating my message that she is not ill she is recovering from stroke.  Prescribed Disengagement will never be the way forward in this household.

Dementia: Social Workers Rule OK !

General

I am posting much earlier this morning as I will be leaving for London in a couple of hours.

Any reader of this blog will have noticed that I have not spared my words when I have felt that social workers have got things wrong.  However this morning’s post is to heap praise on three social workers.

Firstly, Sue our new social worker has made it possible for me to have today in London visiting my daughter. Secondly, two social workers in Coventry have sorted out the mess my brother has been in.  My sister in law now reports that John is being bathed on a daily basis and in her words ‘looks lovely’.  It is such a relief for myself and Jean that we now have social workers who are being supportive.

I have just had to break  from this posting this blog as I have just heard something that has gone bump in the night, wel 4.45 am.  Maureen has slipped on the floor of the bedroom and thankfully no damage done.  She has just asked me: ‘if she needs to get up now to help me to do anything’.  I have taken her the requested drink of water and encouraged her to take more rest.  There is no point in remniding her I am leaving for London in a few hours as it is likely to cause distress, and prevent her from sleeping.

I am really looking forward to seeing Anna as it is a while since we had any quality time together.  The last time she visited us we were consumed with meeting Maureen’s needs,and hardly had any time to catch up.  When you have four children it is something of a luxury to get to know how things are going for one of them.  Like all my children Anna is a lovely person, and her honesty is commendable.  So I am really looking forward to a forthright exchange on all sorts of issues.

Today is something I have been working on for a long time.  It has been frustrating that it has taken so long to establish a pattern of respite that enables me to be more than a Care Partner to Maureen.  I have had several frank exchanges on Talking Point about my aspirations to be Man rather than Martyr.  But just as: ‘once you have met one person with dementia: you have met one person with dementia’.  It is equally true to say when you have met one Care Partner you have met one Care Partner.  We all have to find our own way of dealing with dementia!

Demantia: Decadence Sets In!

General

After a Friday night with a difference we have decided decadence is the only way forward.  We’ve just been listening to UB 40 in bed as we ate our porridge at 1.45 in the afternoon.  

You might be able to guess what Ali and Chrissie were singing.   Well we’ve got our excuses for staying in bed late after last night.

Maureen is still very pensive and keeps thinking about why she is having to stay in this ‘Care Home’.  She feels she is going to be kept here until the money runs out.  No matter what I say Maureen does not believe this is her home.  In her opinion she is here because her family don’t want her.

A post card arrived a short while ago from her son who has called in at Rome on a cruise.  She amazed me that she could read most of it without her glasses. I am hoping that her eye test on Monday will lead to new spectacles to replace those that have been missing for a couple of weeks.  This might mean that we can resume crosswords and other activities where she will need her glasses.

Who knows what the rest of the day will bring?  The sun is shining so I am hoping a short walk will blow away the cobwebs for both of us.

Dementia: An Amazing Conversation

General

In the time we have been together Maureen and I have many illuminating conversations where she has shared her intellect and compassion.   We were talking for a considerable period of time very early this morning and I could only describe our conversation as AMAZING.The Brain's Way of Healing : Remarkable Recoveries and Discoveries from the Frontiers of Neuroplasticity - Norman Doidge

The amazing thing was that Maureen demonstrated her intellect remains intact and she is beginning to use it to correct her faltering memory.   She is also beginning to understand that her brain is continuing to recover from stroke.

One of the most exciting points of her converstaion was when she corrected an element of her confusion.  She began to talk to me about ‘her husband Paul’ and then she laughed and corrected herself and said: ‘I mean you of course’.  I have heard her correct herself in retrospect before but never in the same breath.  The other thing that I found really exciting is her grasp of how tiredness means that she is sometimes not a full shilling.  We nearly fell out of bed laughing that when she is tired she is only ten old pennies.

Am I getting carried away: is all of this hopeful optimism trying to prove the pundits wrong?  The simple answer to that is I don’t think so and it is better to wake up with a smile on my face than a frown.    It is time for a detailed look at how the brain can heal itself and I hope to be reading what Norman Doidge has to say as soon as possible.

Dementia: Oh! What A Night

General,

At 5.30 pm yesterday evening Maureen decided she was tired and it was time to turn in for the night.  I joined her for a while to help her settle down.  Once she was asleep I went downstairs.  She  joined me  a couple of hours later and lay on the sofa while I was watching football on the television.  After about half an hour she said she wanted to go back to bed for more sleep.

After a short while she came downstairs looking very distressed about getting lost upstairs and not being able to find her way around.  I guessed she was nervous about being upstairs alone, and as it was approaching 9 pm, I joined her in bed.

Maureen awoke around midnight and went to the bathroom.   On her return she seemed very confused; not knowing where she normally slept.  She went downstairs to get a drink and eventually found her way back to our bedroom.   She was clearly unhappy about me being in a bed along with her special  pillow and blanket.  So I made my excuses and removed myself to the spare bedroom.  It seemed one of those occasions when Maureen didn’t know who I was or expect us to share her bed.

A short while afterwards I tentatively entered ‘her bedroom’ as I could here her moving around.   I tried to settle her down again and tidied up her bedding.  She was worried about how to turn the lighting of so I asked her ‘where her torch was?’ and she  said: ‘the trouble with this place is there a no locks on the door and things go missing’. Once she was  was settled in bed I turned off the light. we said: ‘night night’ and  left her too it.

Around 3 am I heard Maureen on the prowl again so I delberately coughed and joined her on the landing.  She asked me if I had found my cough medicine and I realised she knew I was her husband this time.  So quickly going into role as her Tea Boy I kept the ‘door open’ to rejoining her in the marital bed.  Once I appeared with the magic brew I slipped into bed and we had the most amazing conversation which I will relay later, shortly before 10 am.

Dementia: A Load of Barney

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There is a simple way to lift Maureen when she is looking a bit sorry for herself.  All I have to do is put Barney McKenna on YouTube singing: I Wish I Had Someone To Love Me.  If you saw her in action  you would see what I mean.

As soon as the opening music comes on she is transformed.  Once she hears Barney’s voice her face lights up and she joins in; loving every minute of the song.

The interesting thing is that her recognition of Barney’s magic is from her short-term memory.  Until a couple of weeks ago she had never heard of Barney McKenna or his music.  So the stroke hasn’t completely destroyed her short-term memory or ability to recall.  Now there’s an interesting thought!

Dementia: Nervous About Away Day

General,

It’s been a long time coming but on Sunday I will visit London to see my daughter.  I’m really looking forward to seeing Anna, as we haven’t had any quality time together for a long time.  Yet I am nervous about how things will be handled at the home base while I’m away.

My biggest fear is that Maureen will wear herself out.  It is likely she will be in ‘hostess mode’ for practically the whole time I’m away.  She will want to show her caers that she is in fine fettle, and the consequences from stroke are a thing of the past.  Her greatest peiod of vulnerability is when her son is here for a couple of hours. They will both be so keen to catch up that his visit alone will be exhausting.

The other concern is that Maureen, as she tires, will become confused by my absence.  In the past despite reassurance from those around her she has thought I have left her.  I sincerely hope there is not a repetition of previous experiences, and she gets confused about which husband is coming back.

It is always difficult to predict with dementia, and trying to anticipate risk is problematic.  What I hope is that those who are looking after Maureen, listen rather than talk, and are compassionate in their communication. Not a lot to wish for but the aftermath will not be good for either of us unless those who are here are very careful.  It’s a real shame that the there hasn’t been time to embed the  Code of Conduct and  the The ‘Gale Force’ Approach To Caring  into the psyche of all who enter our household.

Dementia: Still A Full Shilling!

General

Maureen proved the doubters wrong again yesterday.   She proved that she is ‘a full shilling’: something she suspects some of the medics and professionals doubt.  Her reaction to my concerns about her elevated blood pressure was spot on.

I thought she had overlooked the concern about her elevated blood pressure.    Our chemist had checked it twice on Tuesday as the first reading was 190/80.   The second reading was slighly lower at 180/90.  Maureen seemed to take the news in her stride, and  didn’t show any concern at the time.  However,just to be on the safe side  I contacted our G P and made an appointment for today.

During yesterday afternoon Maureen mentioned that the ‘lady around the corner’ had suggested she return for further monitoring of her blood pressure.  So we popped her back to the chemist and this time it was absolutely fine.

It is possible that Maureen’s poor short term memory isolated her from concern about the high reading on Tuesday. I somehow doubt this, and I think she was on the ball not to panick.  She may well have remembered that blood pressure can vary from day to day..  It is one of those occasions when I will never know if she just played it a bit better than her panicking husband

This is probably yet another occasion when Maureen has proved she is ‘a full shilling’.  When she has energy she remains a highly intelligent woman.  It’s only when she is tired that any diagnosis of dementia would seem valid.  All of this brings to mind a message that my statistics teacher used to drum into his students: ‘statistics don’t prove anything they only suggest’.  I think the same could be said about Memory Tests!

Dementia: The ‘Gale Force’ Approach to Caring

General

Yesterday I posted a suggested Code of Conduct for guiding our approach to Maureen.  Later in the day I realised there was something else that we needed to sign up to.  We need to ensure that our communication with Maureen is always  supportive to her reality.

As I watched our carer  in action yesterday I saw what was needed to go alongside a Code of Conduct.   All Gale’s communication with Maureen was compassionate and reflected her reality.  I could not fault her performance and I have shared aspects of it below.  I have tried to summarise the priciples behind how Gale interacts with Maureen as something that we all need to sign up to.

Maureen was still sorting her underwear out when Gale arrived, so I managed to update her on recent developments.  I then suggested that she popped upstairs to see if Maureen needed any help.  She asked Maureen if she  wanted anything adding to the shopping list that I had drawn up.  Maureen said she was quite happy to leave things to me, and sent Gale on her way to Lidl.

Gale returned with our food shop as I was about to leave for a hospital appointment.  As I was on the door step I heard her ask Maureen if she wanted to help her unpack the purchases.  Then she played her trump card by saying: ‘Shall I pop off after we have unpacked or shall we have a cup of coffee and a natter?’ Maureen happily accepted the latter.

When I returned from my physio appointment they were still chatting together in the lounge.  With the banter that came my way I knew that Gale had worked well – yet again.  She has the remarkable ability to work out what Maureen wants on the day and then respond appropriately.

After Gale had gone Maureen said how much she had enjoyed chatting to Gale.  When you think about how Gale approaches her work it is not surprising that Maureen enjoys her company.  We all need to do it the ‘Gale way’ and sign up to the following:

  • Focus on listening not talking
  • Give Maureen lots of space to do her own thing
  • Never give Maureen any bad news or negative information
  • Never contradict Maureen’s reality:  particularly over time or day
  • Let Maureen take the rest she feels she needs
  • See Maureen as a person: not someone with dementia
  • Follow the principles of’ ‘Compassionate Communication‘: including telling ‘Love Lies‘