Dementia: Bananas In Pyjamas

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Image result for bananas in pyjamas picturesMaureen often wears her pyjama trousers underneath her clothing: yesterday she went commando and revealed all.  For large periods of the day she was openly clad in pink and white checked pyjama pants.

We got off to a hilarious start to the day when she decided that it would be a good idea to cultivate bananas in our neighbours garden. On the second of the day, around 8 am, she lobbed a banana skin over our neighbours fence.  She returned to the house in hysterics over her antics.  Little did I realise at that stage how much  we would need several of our neighbours to get through the day unscathed.

I should have known early on that we were in for quite a day after posting Barrie’s birthday card.  When we returned from posting her brother’s card she thought we had arrived at his house in Nottingham.  She refused to get out of the car and slept in the passenger seat for a while as I remained vigilant by I tidying up the borders in the front garden.

In the afternoon I had to seek Kate’s intervention to enable us to get home in one piece. Maureen had taken off towards Grimsby following my medical appointment and nothing I could say could persuade her to get into the car.  I hate to think what would have happened if Kate hadn’t come to our rescue on such a warm day.

At 10 pm I returned downstairs from cleaning my teeth and there was no sign of Maureen.  I summoned help from two doors away and Zak and Lydia returned from their search empty handed.  Ten minutes later I saw Maureen making for home but lost her at a neighbour’s doorstep.  Paul and I  found her in his back garden excited to tell us she had been out ‘on an adventure’ – we wondered if she was secretly checking on the germination of the banana   She was keen to show me where she had been and to relay her disappointment that ‘none of the other girls would play with her’.

Maureen woke me at 2.30 am to say she was worried that she had lost the little boy who had been in her bedroom.  As I tried to console her she told me that her husband would be home from work soon.  She then slept in an armchair for a short while

At 6 am Maureen planned to make her way home then had a change of heart deciding it is a little cool to walk: not surprising when you are in your P J pants!  She is now sitting in a chair looking perplexed I have no idea what is going on or what to do.   The one thing she needs at the moment is rest and who knows who I’ll be when she wakes up.  I’m hoping that absenting myself by going upstairs will do the trick.

I’m hoping that Maureen’s cold is creating significant changes in her presentation.  We were warned early on that any infection creates havoc with her condition: only time will tell.

 

Dementia: Improving Communication

General, Uncategorized

Compared to Monday we had both had a reasonable amount of sleep last night.  It’s amazing how a night’s rest helps to clarify early morning thoughts and I’ve had my thinking hat on from 4 am.

I have decided to withdraw from the Blogging, Branding and Growth Course: sprucing up my Blog and growing my readership is hardly a priority at the moment.

What I need to do is to ensure is that my communication with  Maureen is effective.  This means I need to think very clearly about what I say and how I say it.

This video clip from Teepa Snow sets me on my way to my wife understanding me:

Teepa is very generous and produces lots of video clips that are available free of charge.  I will make time in the coming days to review my approach to communicating with Maureen by having time with Teepa.  My other focus will be on attempting to move her from the sofa and engage with those things that she shows an interest in.

It is Maureen’s brother’s birthday this morning and that opens up all sorts of possibilities for engagement.  His card remains in our address book so I will bring it out into the open. This might lead to a walk to the Post Office and the possibility of a phone call. 

I’m scheduled for a meeting with Sadie at Hica our Care Agency this morning.  I have a bill to pay for two overnight sits from my visit to York.  Sadie has now completed her investigation into some shortcomings during my three days of Respite.  I plan to use our meeting as an opportunity to build on the positive relationship I have developed with Sadie and let bygones be bygones.  On many occasions I know that Hica are now going the extra mile for us and that makes such a difference to our journey.

I have an appointment with a nurse to have my ears syringed this afternoon.  I’m planning to see Dr Munjal while I’m down at our Medical Centre to discuss Maureen’s wellbeing: her bloated stomach is still giving me cause for concern.  I also need to update him on why I have cooled on the idea of  Day Care.

Dementia: YESSSSSS!

General

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I have just woken after a much needed 2 hour siesta.  What a relief to catch up on some sleep after the events of last night.  For a while I didn’t know where I was when I woke up. This has given me a glimpse of how Maureen might feel at any stage of the day or night.

It will take a shower to ground me and to straighten out my thinking.  How on earth Maureen puts on a brave face for much of the time I will never know: she is still sleeping of course!

 

Dementia: Struggling With Orientation

Mixed Dementia, Uncategorized

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Things nearly got out of hand at 11.30 pm last night.  Maureen woke up and came into my bedroom like a hurricane wanting to know where the other people were.  I woke up in a daze and mumbled something about the fact that we lived here alone.  What she called me doesn’t need to be repeated but not content with abuse she hurled things in my direction and went on to threaten to smash the place up.  Once again she believed she had been imprisoned here against her will.

Fortunately that storm was short lived and she soon took to the sofa and drifted back into sleep.  I took the opportunity to ring up the Konar Suite to take advice on what to do if Maureen returned to her theme.  Vicky one of the nurses on duty gave me a simple line: ‘everyone else is in bed because its midnight and we need to get back to sleep’.  She also suggested that I add ‘they will be visiting us in the morning’.  It is helful that I canring the Konar Suite whenever the Home Treatment Team is unavailable: little wonder that dementia support in North East Lincolnshire is so highly regarded.

 

I also made the of giving Maureen too much space as I tried to orientate her and that backfired.  When I came downstairs a while later I thought she had ran off.  After convincing myself that she had gone outside in the darkness I found her cowering in the utility room, armed with a gardening shoe.  Once I calmed her down she told me that ‘the man who lived here had locked her in’.

 

There have been a couple of other incidents earlier this morning when Maureen has been struggling to orientate herself.  She has been unsure how to find her way to the bathroom or to understand where the others have gone.  She has just asked me what she is doing here as she thinks she lives elsewhere in Cleethorpes.

 

These incidents during the night were disappointing after a  rather pleasant Bank Holiday afternoon.  We had a seemingly ordinary time together pruning a tree together followed by a picnic in the garden.

 

 Maureen’s presentation can change very quickly at the moment: with my status going from hero to zero within minutes.  This means that I have to stay vigilant at all times.  I need to be really careful what I say when she is struggling with orientation or I’ll pay a heavy price when I get it wrong.

Dementia: Landing At 4am

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Image result for Lancaster Landing Picture

Maureen and I met on the landing at 4 am this morning embarking on two different missions: mine to make the bathroom; hers to get up.  We had landed in different quarters last night as she wanted the marital bed to herself.  This followed an elongated getting ready for bed session with lots of distress and confusion.

We had a reasonable day yesterday with a fair amount of activity interspersed with a couple of siestas.  I’m beginning to wonder if resting is due to tiredness or boredom on Maureen’s behalf.  There’s an interesting post by The Unforgettable Team that may help me to shed some light on this issue.

This is the second day running we have cancelled the Carer Sit.  In some way it is our Bank Holiday from Strangers being in our home as Chloe and Gail, two of our regulars, are on leave.  This doesn’t mean I’m confined to quarters as Maureen likes to have the house to herself while I pop next door for a chat or go for a walk around the block.  It was lovely to be greeted by a warm smile yesterday as Maureen waited for my return as she stood at the back door.  I always use a couple of whiteboards to remind her where I have gone when I pop out and suggests she takes a key with her if she decides to go out by herself: preserving a semblance of Maureen’s independence is vital at this stage of our journey.

I need to restrain my temptation to encourage Maureen to join me in a trip to see relatives.  She clearly doesn’t want to make a long journey away from here – every time the phone rings she is anxious to remind me that we are not planning to go anywhere: I also get the impression that she would be reluctant to receive visitors.

As we often say we are planning an ‘Easy Day’ today with a couple of walks like yesterday. Pottering in the garden also beckons as there is always something we can find to do to pass the odd half -hour in the fresh air.

The beauty of being retired is that we know we don’t have to go to work tomorrow: although I’m sure Maureen will ask me what time I have to be on duty in the morning!

Footnote:  I couldn’t resist the Lancaster as I never miss the opportunity to pay a tribute to my dear old dad who was a Tail End Charlie flying on over 30 missions.  When you consider the casualty rate of Bomber Command we were very fortunate children indeed!

Edit:  At 8 am all sorts of things are wrong and Maureen doesn’t even want another cup of tea so she is ‘staying in bed’: hope she sleeps it off!

Branding And Growth Course

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Task for Day One:

My Blog aims to share an honest account of our journey with dementia.  I sincerely hope that outlining our experiences is as much help to others as the incredible support that we receive from fellow Care Partners and those diagnosed with dementia.

I plan to post at least once a day.  By the end of September I hope to have an average daily readership of 150 and 180 followers.

Dementia: DNA In Early Morning Action

General

Image result for Pretending You Are Deaf Picture

I had to apply DNA in large amounts at 2 am this morning when Mrs Dementia was in full flow: if I had absorbed Maureen’s vitriol I would never have got back to sleep.  My dear wife was letting me have it with both barrels as she believed she had washed and dried my clothes but couldn’t find any of her own.  It was one of those occasions when there was no point in challenging her reality: she can’t even remember how to use the washing machine.  After taking a verbal bashing for a while I made her a cup of tea and left her to it.  She clearly got bored with talking to an empty room as on my return I found her curled up in an armchair at the end of my bed.

I have changed the scenery in the lounge this morning and taken down her birthday cards as they have now been up for over a month.  They are adding to her confusion as she looks at them every day and tries to work out who her in laws are. I would doubt that she will notice anything different. However, she was pleased with a change of scenery yesterday when I put a red begonia in a pot that used to belong to her grandmother in a prime position in the lounge.

Maureen swollen stomach continues to concern me and is obviously a source of discomfort.  It is one of the causes of the clothing crisis as it is difficult for any clothing to fit in that area.  I’m going to try one or two dietary changes after advice from our Pharmacist yesterday: Yvonna thinks it is possible that my menus may be behind Maureen’s bloating  

I sent Elaine, yesterday’s carer on a shopping mission and she returned with some joggers that seem an excellent choice.  Unfortunately, Maureen has stashed them away somewhere and it may take them a while for them to surface.  I thought I knew where she hides things but my detective skill obviously need honing as she suddenly started wearing her distance glasses the other day and they have been missing for months. 

The weather forecast is typical for Bank Holidays with lots of rain expected.  I hope they are wrong and I can tempt Maureen to take some fresh air today.  Yesterday was a wash- out following clothing difficulties and little enthusiasm to do anything other than sleep.

Dementia: The Importance Of DNA

General

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Early on in our journey Yvonna our local Lloyd’s Pharmacist alerted me to the importance of DNA once your loved one has a diagnosis of dementia.  Her message of Do Not Absorb became particularly pertinent yesterday.

I returned home from my meeting with the CCG yesterday to a litany of complaints about Hilary the Carer who had been with Maureen during my absence.  Maureen thought she was a spy trying to find out about us with her endless questions.  I went along with Maureen’s reality and agreed that we didn’t need any more nosey people in our lives.

Following a siesta in the afternoon Maureen thought I was her brother: she asked me lots of questions about my wife and daughters.  Once again I didn’t challenge her reality and blagged my way through a challenging hour or so.  I changed things by going out to the shops and when I returned I was back as Maureen’s husband: her brother never surfaced with that shopping.

The interesting thing about the evening was we spent a second night together in the marital bed: sleeping of course.  For the second night running we went upstairs together and slept in our front bedroom as if that was what we always did.

I’ve just remembered I need to pop into our local pharmacy with some fruit this morning, as I caught one of them buying a stash of biscuits the other day.  Someone needs to remind them about healthy eating: they can’t always expect ice cream as a sincere token of our thanks for such excellent support.

Dementia: NELC Welcomes Feedback

General

Image result for NELC LogoI have always found the Local Authority here accessible: they welcome feedback.  Any time I have requested to meet Senior Officers of NELC they have found time within their busy schedules to hear me out.  My faltering presentations, where I have often outlined shortcomings in our experiences of their services, have always been received professionally and prompt action has always been taken to improve matters.  I have every confidence that yesterday’s meeting will lead to further improvements in the provision of services for families where dementia is a factor.

Yesterday I outlined the buck passing that had gone on about Maureen’s dreadful experiences in Ladysmith Road Care Home.  The points I have made will be addressed by the appropriate Officer and I am confident that a review will take place of the future use of this facility.  Although I’m well aware that Austerity Measures have led to the closure of provision that may well have been more appropriate to Maureen’s needs.  As always when I have raised matters communication will continue and I will be kept informed of the outcome of my concerns.

Lisa Hilder, the Assistant Director for Strategic Planning, thoughtfully outlined some new and forthcoming provision that the CCG are supporting.  Their use of Drama to support Reminiscent Therapy seems interesting and details will be forwarded.  I was also delighted to hear that an initiative to address Sleeping Disorders is in the pipeline.  Sally an Engagement Officer who was also at the meeting pointed out that the CCG’s Portal could always be used to reflect our experiences of Services.

It is always a dilemma to know what to do when you are at the receiving end of  poor services.  The shop steward within me is always tempted to ‘take them on’; more recently I have tempered this combative nature of mine with complimenting when services are good.

My blog will continue to give an honest account of how things are for us.  My dear old dad used to advise his children to ‘tell the truth and shame the Devil’: he was still writing beautifully hand-written letters complaining about all sorts of things in his 90’s!

Dementia: Running Out of Gas

General

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Maureen and I were both running on empty yesterday afternoon as we tried to catch up on an unproductive morning.  None of our plans for the morning came to fruition as Maureen eventually gave up trying to find comfortable clothing and slept off her frustrations.

Playing catch up in the afternoon led to exhaustion and when we got home we both took to our downstairs beds for a couple of hours. Siestas seem to help us regain our energy but we are yet to experience a satisfactory outcome from any attempt to provide significant respite. 

I’m meeting Officers of the Clinical Commissioning Group this morning to raise concerns about Maureen’s experience in Ladysmith Road Care Home.  The CCG’s provision of  dementiaservices through NAViGO has recently received deserved national acclaim.  At today’s meeting I will register our thanks for the excellent support we have received from the local set up.  However, I also want to raise a number of points about how respite at Lady Smith Road had a negative outcome for both of us.

Hilary will be here this morning: she is a mature and very capable carer.  I’m hoping that she can make some sort of impact on the ongoing clothing crisis.