Dementia: Twelve Hours To Go

Mixed Dementia, Uncategorized

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I’m hoping for the green light at 2 pm: news that following assessment, Waltham House (‘A Caring Home’) feel they can meet Maureen’s needs.  The prospect of a week off duty is keeping me going at a time when it would not be sensible to seek further sleep.

Lots of people stepped up to the plate yesterday to support us through a rather bizarre day.  Maureen’s Time Travelling was exceptional with one predominant feature which is now a cause for considerable concern.  The Clinical Psychologist from the Stroke Team warned me that once she began to confuse me with her ex-husband to be very wary.  It is patently obvious from how she is frequently addressing me that time has now arrived: hell has no fury like a woman scorned!

There was one really bizarre episode yesterday when whilst searching for a missing child  Maureen reverted to sign language.  She has often told me how as a teenager she had lunch with relatives who were unable to speak and developed her own unique way of communicating.  Once again I had to call on the support of neighbours who encouraged a really frightened woman to use her voice again.

Hostilities and abuse have resumed shortly after midnight so I have stayed out of the firing line.   I’m sorting out one or two outstanding tasks and making sure Maureen has an overnight bag to take with her later on this morning.

I’m still not sure how we are going to move Maureen from somewhere she doesn’t belong to a place where she is unlikely to want to be.  It’s reassuring that Girl Tuesday will be on hand to ease Maureen’s transition to Waltham House and give me the respite I so dearly need!

Dementia: In Whose Best Interest?

Mixed Dementia, ,

Image result for Looking After Our Best Interest Picture The Night Rovers came promptly this morning; arriving within minutes of my telephone request for help.  They chatted to Maureen for a while and eventually decided she was blocking meaningful conversation.  In fact, she was at her belligerent best, challenging anything they said that was open to debate.  After a short while, they decided that they were possibly doing more harm than good.

At 11 ‘o’ clock  I’m hoping to progress an opportunity to give us both the respite we urgently need from this exhausting journey.  There have been false starts before so I don’t want to give any more detail or count any chickens before they are hatched.

Girl Monday will be here very soon and I will have some time to try to move things forward.  As Maureen lacks the capacity to make decisions about her care and accommodation I will have to check if my idea is in her Best Interest: I also need to make sure I protect mine!

Dementia: Seeing Red

General

Image result for A Double Red Card PicturePosted at 4.40 am:

I decided to give myself a Red Card this morning and take a very early bath.  Relaxing in the lavender oil aroma helped to ease my aching limbs and troubled mind.  Maureen chose to converse with me through the bathroom door about ‘her car being stolen’.  I couldn’t quite catch all of her concerns but she was clearly reluctant to enter the bathroom.

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Once out of the bath Maureen gave me another Red Card launching into vitriol about being kept a prisoner here.  The usual diatribe followed: I’m not her husband, I’m mad and once the police find out I will be in real trouble.  It didn’t take me long to realise the only solution was to give her space and hope that sleep had a positive impact on her presentation.  She is currently waiting for ‘someone who loves her to pick her up and take her away from this dreadful place’.

At 4.30 Maureen is standing on the window sill shouting for help out of a quarter light.  I have phoned Single Point of Access who are hoping to get Night Rovers to call in and provide support.

Dementia: Lost, Bewildered and Frightened

Mixed Dementia,

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Maureen seemed totally lost late yesterday evening and I encouraged her to sleep it off. She reappeared from her nap after a short while and was completely lost in her surroundings despite my efforts to ground her.  When it was time to bed down for the night it took a long time to settle her on her choice of the sofa.   She has been awake several times during the night complaining that the people here are trying to frighten her and she can’t wait to get out of this place.  At 5 am she was struggling with a dry mouth and wondering if someone else was needed to help her with medication.

The coaching on medication went relatively well yesterday but it threw up all sorts of anxieties for Maureen about getting it right.  One thing it did address was just for once I was sure her tablets were taken.  There has often been evidence that Maureen has not taken her medication and yesterday I found more tablets in places where they should not have been!

There are a couple of things I’m going to try today in an effort to change Maureen’s presentation.  Firstly, I’m going to ask one of her sons to issue a rallying call for immediate family to schedule regular contact and visits.  Maureen’s continual question about where are my family needs to be addressed.  Secondly, I’m going to try to change her environment by encouraging activities that remove her from the sofa unless she is clearly in need of further rest.  Rachael Wonderlin has posted a video clip on her blog that will help me focus on this mission:

Dementia: Maureen Has Passed Her Physical!

Mixed Dementia

The lab report on Maureen’s urine sample has shown that she does not have a UTI.  Her blood tests are all within normal limits and the swab on her mouth has shown no sign of fungal infection.  Her blood pressure, although slightly more elevated than normal, is not giving the G P any cause for concern.  He has suggested that unless she has any concerns monthly appointments for a general check up will be adequate in future.

Yesterday Maureen told Girl Friday that she is lonely:  she says she understands family members are busy with their own lives but she misses their company.  She generally shows a reluctance to travel to see them as she feels that they should be coming to see her.  I have no intention of persuading her to endure long journeys in her current condition; even though I know she is really missing one particular granddaughter at the moment. You would only have to see her waving with tears in her eyes as she watches Maeve on YouTube to understand what I mean:

Early this morning Maureen has woken up worrying about her medication as she says she’wants to get better’. I’m hoping that this is an opportunity for me to help her regain a semblance of confidence and independence through taking responsibility for her medication. I will keep you posted on how this goes!

Dementia: Reclaiming Our Lives

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Hey Kate Swaffer, my cyber friend, we still feel young so I hope you don’t mind me using the cover of one of your publications to introduce this post:

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It was good to have a long chat with our Key Worker yesterday.  He was concerned that arrangements needed to be put in place to ensure my wellbeing.  As he rightly pointed out if I burn-out then matters would be taken out of my hands and Maureen would be taken into care whether I liked it or not.

As anyone who reads this blog would expect it would be unlikely that I would walk down that well-trodden path of seeking respite by placing Maureen in a Care Home.  This route has been far from safe in the past and does not address our aspirations of togetherness.  So I am exploring what all couples do: having a break together.  My initial inquiries have gone well.  One of my sisters has offered open house: although it is a bungalow in her case.  The Madhyamaka Buddhist Centre are also keen to accommodate us in their tranquil surroundings:

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My previous plans to have a regular break by myself at the Centre do not make sense: we are a married couple who enjoy being together.  I’m sure this is only the tip of the iceberg of getting our lives back as we come up with other ideas for mini-holidays and family members invite us to travel around the country to share their company.

‘Ginger’, as Maureen calls him, also encouraged me to put in place structured arrangements for personal support.  I have, consequently, arranged to meet my Admiral Nurse every two weeks.  This Blog will be used as a basis for discussion on how things have gone in the preceding fortnight along with the reflections of carers.  In addition, I will use my Support Worker from the Alzheimer’s Society to chat over my plans ‘as and when’ as they say.

Plans are already in place to make our home safer and more dementia friendly.  Our decorator is imminent to use colour to make it easier for Maureen to find her way around. Our builder is holding off on plans to make our patio safer until the danger of frost has passed.

Spring is in the air and there is plenty to do in our garden.  It would be easy to spend the summer months pottering in the garden and enjoying the tranquility of Cleethorpes.  This would not address aspirations to get our lives back.  However, if we make sensible arrangements to travel further afield who knows where we might get to in the coming months: then we will both feel we are living again!

Dementia: ‘I Want My Life Back’

Mixed Dementia

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There appears to be a consensus on the need to cut us some slack and allow us to catch up with loved one’s next week.  I may be wrong and ‘Ginger’, as Maureen calls our Key Worker. will soon tell me this morning. He will be here at 10 ‘o’clock this morning; that will please Maureen as she is always keen he keeps a watchful eye on how we are doing.

There is an immediate point of concern in my opinion.   As Maureen put it on retiring last night ‘she hasn’t got a life of her own anymore, as she is being told what to do all the time’.  Maureen frequently says she ‘wants her life back’.  I fully understand why my very intelligent wife hates the loss of her independence.  That is one of the reasons I have been requesting a gathering of the Multi-Disciplinary Team.  Why should she have to wait for her concerns to be addressed and continue being treated in her words ‘as if she is stupid’.  My campaign for an immediate reflection on how she is being treated will continue.

You will be pleased to be reassured my cyber friend Kate Swaffer there remains no room for ‘Prescribed Disengagement‘ here!

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Dementia: Please Cut Us Some Slack!

Mixed Dementia

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Today marks the third anniversary of Maureen’s stroke: the culmination of a catalogue of errors.  It was three days after presenting at Accident and Emergency at Grimsby Hospital before she was sent to the Stroke Unit at Scunthorpe. On arrival, we were asked ‘why have they sent her here?  It’s too late for us to do anything’.  The window for thrombolysis had long been shut and our journey was rather pointless.  When I look back this was the final straw in missed opportunities where few had been interested in listening to my concerns about Maureen’s faltering memory.

Maureen now has a diagnosis of moderate to severe dementia.  She has recently been confronted with the nature of her condition: despite choosing to be in denial for three years.  I’m not sure anything has been gained by trying to bring her out of denial – the process has certainly scared the living daylights out of her, as has preparation for the Best Interest Meeting concerning her future care and accommodation.

Sometimes Maureen’s reality is I’m seeking to have her taken in a Care Home because I want all of her possessions for myself.  My reassurances fall on deaf ears when the going gets tough. Therefore, I am requesting that we are left alone until Monday 13th of March and the procession of professional staff to our home is temporarily suspended.  The one exception being our Key Worker who Maureen calls ‘Ginger’ as she likes him to pop in to see how things are going.  We need to see if my strategy to distract and redirect (outlined below) will give Maureen the strength to cope with the ramifications of the BIM. My concern is that if we don’t cut her some slack she will carry out her threat to ‘give up’ and that is not in anyone’s  best interests!

We need to see if my strategy to distract and redirect (outlined below) will give Maureen the strength to cope with the ramifications of the BIM. My concern is that if we don’t cut her some slack she will carry out her threat to ‘give up’ and that is not in anyone’s  best interests!

Monday the 6th of March is my brother’s birthday.  He has Alzheimer’s and is on Continuing Health Care in a Nursing Home.  Three days later it is my mother’s birthday. She has vascular dementia and is in a Care Home.  Next week needs to be set aside so that our chauffeur can take us to see our loved ones.  Dementia is such a significant factor in our lives and a compassionate approach is needed at this moment in time, rather than trying to bounce us into the procedures of the Mental Capacity Act!

Footnote: This post is being forwarded to all professional staff who are providing support to us on this journey.  I will also copy to Maureen’s G P as I seek his permission to give her prescribed medication covertly.  The ongoing battle to persuade her to take tablets is draining!

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Dementia: Action Man Returns

Mixed Dementia, Uncategorized,

Image result for action man picturesMaureen often asks me: ‘what’s the plan Action Man?’  So I took on the mantel yesterday in an attempt to move things in a positive direction.

Once it was confirmed that Maureen had a UTI  I  encouraged the Practice Nurse to outline a formula for recovery:

  • Antibiotics to be taken for a week.
  • Eight glasses of water to be drunk daily.
  • A shower or a bath to be taken three times a week

This formula complemented our early morning pledge:

  • To sleep together in the marital bed at night.

Girl Monday morning also gave me some much-needed coaching:

  • To stop giving Maureen options as she can no longer make choices.

The support we received from professional staff yesterday was of a really high standard.  Early in the morning, a Duty Officer from Social Services contacted me as our Key Worker was not working.  Within a short period of time, she managed to secure and arrange two-hour afternoon carer sits for the remainder of the week.  The added bonus being that this additional support would be with known faces.  Throughout the day other professional staff weighed in with support and advice.

It will take a couple of days before Maureen’s medication starts to kick in.  With luck, things will then move in a positive direction – providing ‘Action Man’ remains well enough to deliver the goods!

Dementia: Oh What A Night

Mixed Dementia, ,

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Yesterday morning and afternoon had been very challenging as I tried to deal with Maureen’s constantly changing presentation.  As the evening progressed and none of my normal routines were having any real effect I sought advice from staff on the Konar Suite.  I often find that the sound of a soothing voice gives me the impetus to change my approach.  After my phone conversation, further music onYouTube had a positive effect for a while before Maureen handed me a Wild Card.

There were no stars in the sky at 2 am as I tried to distract Maureen’s, yet again, by responding positively to her request to get some fresh air.    We didn’t stay out for long as there was a cool wind and we were both tired.  However, it took a further half an hour of YouTube on our return before I was able to persuade Maureen to accompany me to sleep in the marital bed.

This morning I’m hoping that we will be able to establish if Maureen has a UTI.   A recent purchase should help to preserve Maureen’s dignity as she seeks to provide the necessary sample.  Once again Girl Monday/Friday hit the nail on the head on her last shift encouraging a focus on protecting Maureen’s dignity and independence.  I’m so fortunate that I have sat next to Girl Monday/Friday (Nellie) for almost three years now: she is my immediate mentor when it comes to Maureen’s care.

We are out of the blocks with a meeting of the Multi-Disciplinary Team on Thursday morning with only Mental Health needing to confirm their availability.  The Best Interest Meeting is still some time away and in the meantime, we need to ensure that our approach to Maureen’s care is appropriate and cohesive!