Dementia: Is The Real Problem The Act?

Image result for The Law is an Ass Cartoon

The case for a review of the Mental Capacity Act has been made and accepted.  Unfortunately, Brexit has meant that it is not a priority at the moment.  However, I would humbly suggest that in this area common sense has gone out of the window and the MCA is being misused.

I’m very concerned about the way the MCA has been applied to us:

  • Meetings have not been recorded accurately.
  •  Professional staff who know Maureen have been excluded from meetings.
  • Meetings have been called when telephone conversations would have sufficed.
  • The Application to deprive Maureen of her liberty is appalling.

From our experience, it  is time for the Local Authority and NAViGO to review their guidelines to employees on the application of the MCA!

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Dementia: Thank God It’s Friday

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Our Little Diamond is back this morning: fondly known as the ‘Pocket Rocket’ by her Agency.  It is a relief to know that she is also on duty over the weekend.  We haven’t seen her since Monday and her colleagues have struggled with Maureen.

I wouldn’t be at all surprised to see Maureen looking dishy after I’ve been out shopping this morning.  Our LD can generally ease her into the shower and help her to wash her hair.  I have seen how easily she gets Maureen to take her medication.  In the last three days, her colleagues have failed to get her to down her tablets!

My scheduled six-hour break didn’t happen yesterday: Girl Thursday wasn’t comfortable to be here for such a stint.  Unfortunately, she had not informed the Agency so I had to get back here  as soon as I could.

Maureen’s presentation can be very challenging and carers need to be cute to engage her in activities that will help her to retain her functional and cognitive capacity.  This is an issue I will need to talk over with our Key Worker.

Additional carer sits have now been agreed; to give me a weekly six-hour break one day a week and to allow me to attend Buddhist Meditation Classes on Wednesday evenings.  It will be frustrating if this means that Maureen continues to go to sleep when certain carers are here and then stays awake half the night!

It would be inappropriate to discuss any further the concerns I raised yesterday regarding the Local Authorities DOLs Application.   I have been advised to make a Formal Complaint about this matter

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Dementia: She’s Over The Moon

When I told Maureen about my forthcoming birthday treat she was delighted.  Last week I secretly booked a three-day trip to Thoresby Hall;

Thoresby Hall Hotel, Nottinghamshire, England - The grounds are nice for a stroll around

where a Rat Pack Tribute:

will be providing entertainment.

Since ‘my confession’, she has been singing along with Dean, Sammy and Frank on YouTube from the early hours.

The beauty of Thoresby Hall is the location: near to both Nottingham and Coventry.  Being so close to our birthplaces offers so many possibilities during our mini-break.

Maureen has always needed lots of time to prepare for holidays.  It will be interesting to see when she starts developing her lists so we have all we need for our holiday.  She has plenty of notice as my birthday is five weeks away.  In the meantime, it’s a delight to see her so happy as she sings along to some of our old favourites.

 

 

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Dementia: ‘Sparks Will Fly’

I have no doubt that there will be some casualties from the Local Authority’s DOLs Application.  It was an appalling document: calling my wife ‘Mary’ on one occasion and also stating that she was my ‘father’. When you see the level of seniority that has approved the document it becomes a real concern.

The Application was an inappropriate legal remedy.  I don’t need the Mental Capacity Act to tell me to keep my wife safe.  I’m quite capable of ensuring that her welfare is protected at all times without an order under the MCA.  This law is an ass and words fail me to describe those who processed the Court Application!

I have been assured I will get a written apology for this mess: an explanation would also be a reasonable expectation.

N.B. I have posted the above at 8pm as sometimes it is important to get a bad taste out of your mouth.  Some really good things have happened this week and I will share these in the morning

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Dementia: Are My Knickers Needlessly In A Twist?

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I’ll find out this morning if I have got my knickers in a twist based on a misunderstanding.  The Local Authority has applied to allow me to deprive Maureen of her liberty.  It is perhaps fortunate that their application- despite being accepted by a District Judge – requires revision as it contains several inaccuracies and misleading statements.  Consequently, I have been unable to complete my statement and have a meeting this morning to discuss my concerns

What I hope to clarify this morning is that I can exercise discretion.  If they really want me to become Maureen’s goaler I may walk away from being her Care Partner!

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Dementia: Let Them Eat Cake!

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Afternoon tea was taken again yesterday.  Scones with strawberry jam and cream were followed by Bakewell Tart.  This new routine is part of a cunning plan to entice neighbours into our home.  Aunty Clarice has already accepted her invitation.

I’m sure it won’t take long before our invitations are reciprocated and we are popping across the road to have tea with a friendly widow or two.  That is when the real fun will start as they are sure to offer homemade produce.

The ‘Cleethorpes Bake Off’ is within our grasp and if Maureen thinks I’m going to be a ‘Lone Baker’ she has another think coming.  I wonder how long it will take me to learn how to make her signature ‘Cut and Come Again Cake’.   What a delicious way to attempt reminiscence therapy!

 

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Dementia: ‘Happy Meal’ Saves The Day

When I returned from Cleethorpes Leisure Centre yesterday it soon became things were not good.  Hostility was in the air and I made it worse by stupidly suggesting that I took our grandson to see a neighbour’s dog.   This gave Maureen a further opportunity to vent: her husband wanted to leave her for a pet!

Fortunately, our daughter in law played a trump card by taking her two children out for a walk.  This gave me and Maureen’s son an opportunity to cool things down.  He told me how Maureen had spent the last hour convinced she was in the hospital awaiting treatment and their distraction techniques had not changed her reality.

The ‘Sound of Music’ in our sunroom set the tone for a change of presentation.  I didn’t manage to get Maureen to move into her normal dance routines but following a hug from her son and a cup of tea we moved on to join the rest of his family at McDonald’s.

A Chocolate McFlurrie saved the day and two grandchildren saw moments of the Nana they know and love.

 

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Dementia: Stop Worrying, Start Living

Today’s Buddhist teaching is once again from Dekyong :

As well as trying to deal with my mind I’m also taking steps to resolve issues with my body.  My physiotherapist has now prescribed a series of exercises to address restricted movement in my shoulders and legs.

There is little doubt that bilateral hip replacement has reduced the chronic pain that I used to experience.  What I hadn’t  understood is that is new hip joints are not the end of the story.  If I want to make the best of the Surgeon’s work I need to exercise to maintain muscle mass and flexibility.

My shoulder problems are explained by physiotherapists as ‘white hair rotator tear’.  Unfortunately, I have the credentials on both fronts and an operation for someone of my age is not guaranteed to work.

Buddhist assert they are not their body: little consolation when pain is keeping you awake at night.  When I was last at Madhyamaka my good friend Kelsang Dorde

Image result for Kelsang Dorde picturetaught me a simple breathing meditation that helps me get back to sleep when I’m woken in the early hours – yet another ‘no-brainer’  from the man!

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Dementia: Whatever Happened To Positive Risk Taking?

 

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The Local Authority has made an application to the Court of Protection to allow me to deprive Maureen of her liberty.  I guess if I don’t complete the requisite paperwork they will claim she is no longer safe in my hands and lock her away in a Care Home.

I am as keen as anyone else that Maureen is safe.  However, I wonder what has happened to the idea of positive risk-taking?

Maureen’s presentation fluctuates and on good days she is as sharp as a tack.  If she begins to see me as her goaler that is yet another nail in the coffin of our relationship!

I also do not accept that the local community is a dangerous place: quite the opposite.  Our neighbourhood is full of people who look out for Maureen and many kind souls have brought her back home when she has asked for help.

I’m sure that there could be another way.  New technology offers all sorts of options to keep Maureen safe in the community.  IMHO having the right to deprive Maureen of her liberty is a retrograde step on the path to Kate Swaffer’s Prescribed Disengagement!

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Dementia: Taking My Time Off

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One of my mistakes during 2017 was not taking my time off.  There were many occasions when I chose to stay around during Carer Sits: especially when our Sun Room was being built.  I made a similar mistake on Christmas Day and Boxing Day when I thought it would be better to have the day to ourselves: what a bloomer!

Yesterday carers were here from 10am until 4pm and I took full advantage of their presence.  Maureen has no concept of time and didn’t appear to notice any difference.

When I met our Key Worker yesterday I asked him to build one six-hour sit into our Support Package. This arrangement will be on Mondays from now on – subject to the availability of staff.  A six-hour break will mean that I can have a relaxing time, rather than rushing around to make sure you I’m back to relieve carers.  I have also asked him to put an additional Carer Sit in place on Wednesday evening so I can attend local Buddhist Meditation Classes.

A week on Monday Maureen will go into Alderlea Care Home for two weeks.  Now I have ‘sussed’ the place out I will not visit during that time and take a complete break from my caring role.  I have already arranged a Buddhist Retreat for the first week and will catch up with family and friends later on.

It has taken me quite some time to accept that Carer Sits are my time. and from now on I’m out the door almost as soon as they arrive.  This is my plan on Sunday and I will not be here to see visiting family members until our carer goes at the end of her shift.

I have edited my About page to reflect my mission to share positives on this Blog from now on.  Every day, Maureen amazes me with her intellect and how she attempts to deal with the consequences of severe dementia.  One of our mantras has always been to accentuate the positives.  Why change habits of a lifetime just because dementia is in our lives?

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