Category Archives: General

Dementia: An Amazing Woman

General

I have always thought my wife is an amazing woman who has dealt with lots of adversity in her life with dignity.

Her presentation this morning has been impressive; her rational thought sound and her logic intact.

In some ways her gentle nature is letting her down at the moment and it must be difficult to be assertive when dementia is a factor.

One thing I know is in my hour(s) of need she has always stood shoulder to shoulder through thick and thin and I’m with her on this one.  As she says ‘why do I need to go into a Care Home I saw last week what it does to people: it makes them worse’.

I’m optimistic that I can get some common sense into any discussions about Best Interest We all need a little more time before we consider the next stage of our journey.  Hence I am meeting the Head of the Home Treatment Team at 10.30 this morning.  I then move on to meet the Manager of Ladysmith Road Care Home to receive her response to my concerns.  This morning’s carer sit is so I can have some time to myself: I rest my case!

Dementia: In Whose Best Interest?

General

It didn’t surprise me yesterday when Maureen was found to lack capacity as far as her future care and welfare was concerned.  However after a troubled night and our early morning conversations I’m far from sure what lies ahead is in our Best Interests.

There is no doubt that professionals are trying to protect both of our interests: responding to the progression of dementia and a worn out Care Partner.  It may not be possible to do much about the former but the latter could have been prevented and even now could be alleviated.

It isn’t surprising that I face Carer Burnout when you consider how poorly I have been supported. The initial support from social services was so inadequate that a member of staff had to be taken off the job.  Our Care Agency is not fit for purpose and a replacement Agency at the weekend had fundamental shortcomings.   Occasional periods of respite may have been good for me but have always been a nightmare for Maureen.

Whatever happens next has to be in both of our Best Interests.  Our marriage vows remain firmly in place: it is until death do us part.  Why should the inadequacies of care in the community be allowed to separate us?  We are not going to be railroaded down a dead end: Maureen is not going to be warehoused and turned into a gibbering wreck!

 

Dementia: Our Camp Song

General

News from Base Camp – this is the Camp Song played as early morning tea is served:

Maureen has asked me if the children are enjoying camping along with whether I’m warm enough at night.  Camping is giving me much more rest as I lie on a mattress close by heron the sofa soothed by the sound of Maureen’s breathing.  If she wakes distressed a few words of comfort from me ease her back to sleep.

We are both really excited today as we picked our first crop of home grown kidney beans yesterday.  Our Sunday Dinner will be really something today; with an even greater array of vegetables to go with a slice of chicken.

It’s great weather for camping today in Costa del Cleethorpes – a warm day with lots of blue sky on the horizon.  Maureen is still cold even though she is wearing two pairs of thermal socks toasted by the gas fire on low heat.

I think my attempts to help Maureen rebuild her confidence are paying dividends as there are signs of a spring returning to her step as she moves around the house and the garden.  There is a saying that ‘adult eduicators never retire they just go grey’: white in my case.  How lovely to see that I’m still up to the job by  helping Maureen with her struggles to keep Mrs Dementia at bay.

 

Dementia: The Comedy of Errors

General

I think I may have been a tad liberal with the title of this post: farce is nearer to the mark.  When I was putting away the notes from the carer’s sit yesterday I found a Temporary Care Plan tucked into the folder of our normal Care Agency.  The worrying thing about this sheet of paper was that Kat the Senior Care Worker had filled out this pro forma with the comment that Maureen had mild cognitive impairment.

I was a little taken aback on Tuesday when Doctor Kokton diagnosed moderate to severe dementia .  What I find extremely concerning is that a Senior can pop in here for ten minutes or so and arrive at a very different diagnosis.  She also had the luxury of meeting and getting the low-down from Chloe our most experienced carer.   It is fortunate that Sarah did not read this unhelpful sheet of paper and tried to weigh up the situation herself.

The whole episode yesterday was a farce with Maureen continuing to think that some carers are here to check up on us.  This is a reasonable conclusion to come to when you are on the end of a battery of questions.

Sunday is a day of rest with carers banished from the house.  If anyone else rings up to come today the fabrication will continue: we’re going out!

 

Dementia: Hi de Hi Campers

General

We’ll be camping again tonight to recover from an unhelpful Carer Sit.  The poor woman had obviously not had her ‘card marked’ and thought she was chairing Twenty Questions.

Maureen demonstrated her capacity by going along with a cunning plan to be invited out to visit her brother in Nottingham tomorrow.  Her performance talking to no-one at the end of the phone was worth an Oscar.  Needless to say we gave the woman an early bath after 9o minutes sending her on her way half an hour early..

How reassuring that Team Collins are back when the going gets tough.  We combined so well to prevent a further investigation tomorrow.  I’m about to phone the replacement Agency to make sure we can continue with our camping holiday tomorrow with our usual Sunday Roast rather than another grilling.

We have had nothing but trouble with arrangements for respite and now we can’t even get an additional sit without it going belly-up!

 

Dementia: Picking Up The Pieces

General

Maureen remains bruised and broken from her experiences in Ladysmith Care Home.

She is now frightened if I’m out of sight fearing I have left her

Her G P will make a home visit around noon.

The Capacity Assessment has been postponed until she is well enough to have the best chance of demonstrating capacity.

This is the second time that respite has had a negatives outcome for my poor wife: she is now a shadow of her former self.

 

Dementia: Off Her Trolley

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Maureen’s recollection of how she gained black eyes and hurt her back is consistent: she ‘fell of a trolley that was travelling at speed’.  She recollects colliding with a door as she fell to the floor.  The Care Home says she fell out of bed and they found her lying on the floor.

Last night was another story of sleep deprivation with Maureen frequently waking up in pain from her injuries.  I doubt I have had more than two hours’ continuous sleep.  This has become a habit that is very dangerous for my well-being and ability to be a supportive Care Partner.  On a couple of occasions yesterday Maureen picked up on my snappy mode and reacted accordingly fuelling a fire of tension that I had lit.

The dangers of Carers Burnout are increasing in tandem with Maureen’s deterioration.  This situation cannot continue without a price that neither of us can afford being paid.  If action isn’t taken today the Best Interest Meeting will be academic, as the next stage of our journey will already have taken an unfortunate turning.  I will be in contact with Sue our Social Worker this morning to confirm to our Care Package for the coming weeks..

 

Dementia: Little Things Mean A lot

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If looks could kill I wouldn’t be around any longer as Maureen’s presentation continues to become more challenging.

I don’t think she knows who I am and she wants nothing to do with the meal I’m preparing, despite it being one of her favourites.

The Capacity Assessment by the Home Treatment Team has been delayed because they have been involved in crisis work all morning.  I hope they will be here this afternoon to carry out the assessment and advise me on the best response to Maureen’s presentation.

Sue our socail worker is trying to organise additional carer sits for the weekend.  I hope the weather is kind and I’ll be able to have a refreshing walk in the sunshine: little things mean a lot when Mrs Dementia has got one on her.

Dementia: Mission Impossible

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Some time ago Yvonna our pharmacist advised me to work on my DNA: to learn not to absorb when Mrs Dementia was at home.  When Mrs Dementia surfaced last night bad mouthing her mother and my inability to explain her lack of contact I realised that my DNA mode was lacking.  Fortunately telephone advice from a nurse on the Konar Suite  ‘to give her space and ensure she was safe’ saved the day.

I think Maureen’s ‘Official Birthday’ may have been too much for her.   We may got it wrong and she smelled a rat with me on the phone as her son tried to keep her busy.  In retrospect I could have joined the party and progressed business today.

Conversations with our G P and my Counsellor at Clee Medical Centre yesterday caused me to consider if it time to accept that looking after Maureen at home is no longer a viable option. This has led me to request adequate time to sort out my thinking on my preferred way forward.  However, before I can look at options I need to still my mind with some Buddhist input.

I  am already re reading Modern Buddhism with particular reference to attachment. I will contact Ed, my friend, from Meditation Classes in Grimsby to chat over my take on attachment.  Further respite at the Madhyamaka Centre can only help me to develop the peaceful mind needed to tackle the next stage of our journey.

This morning my role of minimising Maureen’s distress is becoming Mission Impossible.  She is extremely confused and in considerable pain from her stay in Ladysmith Road.  On the advice of G P Out of Hours Paramedics have called to check her out and she is a different woman in their presence.  Mrs Dementia who couldn’t get off the sofa has been seen off by Maureen who is now fine and dandy.  

It will be interesting to see who is here when the Home Treatment Team arrive to conduct a Capacity Assessment later this morning. 

 

 

Dementia: Bruised and Broken

General

Maureen has a black eye, extreme back pain and in the words of her son ‘has been broken’ by her spell in Ladysmith Road Care Home.  I am meeting the Manager on Monday to hear the results of her investigation into Maureen’s treatment whilst in her care.

I will also document all my concerns about Ladysmith Road Care Home for the attention of the Clinical Commissioning Group and our lawyers.  When I have time I will take similar action over my concerns with our Care Agency.

Our G P has confirmed that the results of tests on Maureen’s sample are negative and she has not had an infection.

The Home Treatment Team will carry out a Capacity Assessment of Maureen tomorrow morning.  This will inevitably lead to a Best Interest Meeting to determine how Maureen’s welfare can be protected.

The next step on our journey has now been taken out of my hands: I have to reluctantly accept that I am losing control of Maureen’s destiny.