Tag Archives: Better Practise

Dementia: Dan The Man To The Rescue

Mixed Dementia,

Image result for Young Chauffeur picture

There is little doubt that we have had a narrow escape from the traditional route that Care Partners consider when they are jaded: seeking Respite Care for their loved one.

We both feel rejuvenated from our trip to Coventry on Thursday.  Whenever we think of the smile we put on both my brother’s and mother’s face we know that we got that part of our journey right.  When I think of the route I might have taken to deal with my tiredness I shudder when I remember the result of that path for my brother.

Respite Care led to a disaster for my brother.  His wife was worn out and placed him in Respite Care.  He struggled with his new environment was eventually accused of assaulting a member of staff and was Sectioned and taken to a Mental Health Unit.   They detained him for six months as no Care Home felt able to cope with the resultant challenging behaviour.

My brother has never been a violent man.  Alzheimer’s has clearly changed him and he is now a shadow of his former self.  What on earth they medicated him with defies belief  He didn’t speak on Thursday: words are rare from this lovely gentle man.  He sat in his favourite chair smiling at us on Thursday  – perhaps we were a distant memory in his damaged brain.

My mum’s story is rather different she is in her Care Home by choice  When dad died she couldn’t cope with living alone.  She was adamant she wanted somewhere where there were no men.  Her Care Home is small former farm house where she is well cared for.  However, I often wonder if she has prematurely lost the ability to walk unaided as sitting looking at the centre of the room seems to be her main activity.

When I was jaded earlier in the week I explored Respite Care for Maureen.  I’m so pleased that she declined my attempt to have a break from my role as her Care Partner.  What a mistake that would have been: we would have missed out on bringing such joy to my mother and brother.  I feel rejuvenated that we have found a better way forward: we will remain on this journey together as we vowed when we married.

We’ll be on our travels again next week.  Airport Travel is an excellent local company and they are very attentive to our needs.  I have a couple of ideas where ‘Dan the Man’ could take us to next week: I’ll just have to see where Maureen fancies going on the day!

 

Dementia: My Two Top Women

Mixed Dementia,

I know I’m a little late for International Women’s Day but that is deliberate because tomorrow is my mum’s 96th birthday.  This is my musical message to my mum:

Maureen will be accompanying me tomorrow on a trip of over a 100 miles to see the Birthday Girl.  This is my musical message to my dear wife and reflects her approach to living with dementia:

 

Dementia: Reclaiming Our Lives

General, ,

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:

Image result for Reclaiming Our Lives from dementia Picture

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:

Image result for madhyamaka kadampa centre yorkshire

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: 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!

Dementia: Time For Some Straight Talking

Mixed Dementia, ,

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This is no time for beating around the bush: Maureen is on a downward spiral.  No one knows what is behind the increased level of confusion and the attendant ongoing challenges she is presenting to me and carers   Anyone who suggests it changes from day to day should witness this: it’s frequently within minutes that our status changes from friend to foe.  What I can say without fear of contradiction is that I’m very tired and that a reappraisal of our situation is required.  That is why I am requesting an urgent meeting of the Multi-Disciplinary Team.

I anyone else tells me I’m ‘doing a good job’ or suggests the solution is to ‘distract and redirect’ my response is likely to be in Anglo-Saxon.  As much as I appreciate compliments it is a time when action is needed rather than words.  We need to review whether the focus of professional input along with our Care Plan reflects where Maureen is in the progression of her condition!

From immediate effect, anyone who has or might be carrying an infection will not cross our front door. I took a chance last week with two individuals who may have brought the lurgy into this household and Maureen now has a heavy cold!

We would not cope without this guy at the moment:

It’s 4.30 in the morning and ‘Rudolph The Red Nose Reindeer’ is in great voice.  Don’t worry my cyber friend ‘Amazing Susan Macaulay‘ (pictured below):Image result for Susan Macaulay Amazing

I have videoed my ‘Singer Lady’ but as you know safeguarding issues prevent me from sharing her lovely voice on here.  If only you could see her joy when the Three Tenors are on it would bring tears to your eyes:

She is singing in Italian at the moment: it has to be‘Incredible Maureen’ from now on!

Dementia: Just What The Doctor Ordered

Uncategorized

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Yesterday, I took the initial steps to establish a regular day off from my role as a Care Partner for my wife. My first move was to explore the possibilities of Maureen going to a local Care Home from 10 am until 5.50 pm on Wednesday’s.  Then I requested that one of our Care Agencies resumed a regular night sit from 10 pm until 7 am.  Following a visit to our other Care Agency, I’m relatively confident that it will be possible for them to fill the gaps.  This will mean that I will be able to be free from my caring role from 9.30 am on Wednesday until noon on the following day. I’m hoping that this regular package of care will be in place by the middle of March.

The prospect of 24 hours every week at Madhyamamka Buddhist Meditation Centre (pictured above) fills me with joy.

A regular break from my caring role is just what the Doctor Ordered.

I couldn’t wish for a better present on my 71st Birthday!

It isn’t important that my other plans for yesterday didn’t really come to fruition.  We had a lovely time with Maureen’s son and that helped to distract her from the bad vibes of the previous day.  There was lots of redirection during the day as we shifted our plans to take account of Maureen’s energy levels.

I think it would be fair to say she was wiped out by the time her son left us to travel back to the West Midlands: she was no longer able to conceal the level of her confusion and fear.  Before she took to the sofa early in the evening she had been shadowing me; in tears constantly telling me how frightened she felt. This is not what the doctor ordered: a significant dip in her condition!

Dementia: Taking The Bull By The Horns

Mixed Dementia, ,

Image result for Taking The Bull By The Horns PictureI am planning to go for it this morning with an emphasis on distraction and redirection.  In the heat of the battle yesterday, I forgot a basic that any apprentice Care Partner should have grasped by now.  For a while, I foolishly tried to reason with Maureen to establish that I was a good guy.  Where on earth I expected logic and reason to appear from after all this time I will never know.   Such qualities have long gone and when abject fear took over the going got really tough.

I should have known that two strangers from the Local Advocacy Service probing Maureen about what she would do if I wasn’t here would spell trouble.  I could have anticipated that fear would eventually lead to her turning on me as the driving force for the probing questions. However, I was taken aback by the force of Maureen’s reaction and failed to apply distraction and redirection techniques.  It took telephone coaching to put me back on the straight and narrow and for Mrs Dementia to be put under pressure and for glimpses of my loving wife to return.

So this morning I have a cunning plan to take the Bull by the Horns.  Maureen’s son will be here around 10 am and I going to involve him in the Birthday Mission.  If all goes well we will go into Grimsby to help Maureen solve her inability to access her own money.  Our first call will be her bank so she can cash a cheque and order a new pin number for her debit card.  Then she will have cash in her purse: a common complaint is that she hasn’t tuppence to her name. Our next call will be for her to buy the ‘old man’ a card and a present for his 71 st tomorrow.  If she wants to get me a surprise I can leave them to it and wander around Grimsby by myself for a while.

If my cunning plan doesn’t work I can always play ‘More Than Words’ tomorrow morning as a reminder of the good old days:

This was OUR SONG in the early days of being together: if Mrs Dementia surfaces tomorrow she can Take That!

The context for my bright ideas this morning is that Maureen has been wanting to go home since 3 am.  She wants to live with her parents again, where there are no thieves stealing her clothes.  I have listened to her concerns and tried to put her mind at rest to no avail.  I attempted to distract her by talking about the impending visit of her son; with unfortunate consequences.  I listened to a diatribe about him for quite some time.  She doesn’t know ‘what he looks like and knows nothing about him as he never comes to see her.’ Her disappointment about the diminishing level of contact with her family is palpable.  She has been pleading with her daughter who died some time ago to come back, as she was a real friend.

Around 5 am I decided to give Maureen some space – hoping that the passing of time would lead to a change in her presentation.  My hunch paid off and by 6 am she came to tell me: ‘she didn’t know what she would do if I wasn’t here’.  It will be interesting to see how she presents when her son arrives.  One thing for sure, I will need our night sitter on duty tonight so I can try to catch up on a bit of shut eye!

Dementia: ‘I Know What’s Wrong Now’

Mixed Dementia

Image result for I know What's Wrong Now I Have Dementia Picture

As any reader of the Blog will know I often have misgivings about the work of professional staff who are doing their best to support us.  Shortly after 1 ‘o’ clock this morning when Maureen was trying to resolve where her clothes were, any doubts I a new  Care Coordinator receded when she said: ‘I know what’s wrong now; I’ve lost my short-term memory’.  I have been skirting around this issue for almost three years and thanks to the skilled work of our C C I can now talk openly with Maureen about how we deal with the damage caused by her stroke.  Just for starters, we have decided to put crosswords back on the menu tonight; alongside our normal routines of:

  • Singing with the man:
  • Catching up on the exploits of the Famous Five:

I realise we are very fortunate to be living in this neck of the woods.  The support to someone with dementia in North East Lincolnshire is probably as good as it gets.  However, from my perspective, there remains a missing link that I need to pursue.

I would find it helpful if someone kept a watchful eye on my role as Maureen’s Care Partner: someone to give me line management/ support and supervision.  I’m afraid old habits from my professional career die hard and that is something I need within this labour of love.   Continually being told ‘I’m’doing a great job’ doesn’t do it for me – my response is ‘how do you know?’.  I realise that this need creates further work for professional staff but how else can we know Maureen is getting the care she deserves?

In the absence of  line management/ support and supervision I have decided to post a timely  reminder to myself:

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Dementia: Talk the Talk and Walk the Walk

Mixed Dementia, Uncategorized,

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I’m often too tired to think straight when it comes to the crunch.  On some days I hardly get any sleep on others the challenges come so thick and fast I don’t know which way to turn.  When Maureen threw out the challenge of being allowed to wander yesterday I immediately ran for the cover of requesting another assessment by Occupational Therapy.  Later in the day after several conversations, a way of preserving Maureen’s independence emerged.

To take a step to release Maureen from her bonds we all need to walk the walk: whenever she wants to go out we accompany her.  The days of restraining her freedom have to be recast as joining her on her right to roam.  This will allow her to fulfill her doctor’s advice to ‘keep on walking’.  When I look back this is a simple solution: rather than calling her back I need to keep my training shoes on and be prepared to step it out whenever my wife beckons.

When I was struggling last week for a ‘one liner’ to address Maureen’s concern about our Wednesday Night Sitter the Local Branch of the  Alzheimer’s Society came to my rescue. They provided sound support again yesterday as did Maureen’s Care Coordinator. From now on we are going to talk to the talk of person-centred support and walk the walk!

Our Care Agency also walked the walk by arranging for Girl Monday to be here today as Girl Wednesday is off sick for the next week.  They understand the need for continuity and pulled out all the stops to get Maureen’s favourite carer here today.

In the evening our Decorator trod an excellent path as he popped in to see us.  It’s fantastic how people call in just when you need (ask) them!  He stuck to our rehearsed script and will return shortly to refresh the kitchen.  Within a few weeks, it will be easier for Maureen to find the downstairs utility room and I wouldn’t be at all surprised if there is sufficient paint left over for our bathroom door to also be painted olive green. While he is working upstairs I’m sure he will suggest that our bedroom door might need refreshing in a suitable colour – I’m sure you follow my drift!

Folk music has been ringing out from YouTube this morning and Maureen is in great voice.  She will be delighted when Girl Monday shows up in a few hours.  I will leave the girls to catch up so that I can progress some important financial business to prepare for what lies ahead on this unforgiving journey.