Calke Abbey, and the Memory Clinic

Earlier in the week we walked round Calke Abbey House.  We have been going there for about a year but had yet to visit the House itself.  ‘Don’t go too early in the season’ we were advised ‘it is freezing’.  So once we felt it had warmed enough we got our tickets and entered the house.  The house is wonderful, full of rooms randomly littered with ‘junk’.  Furniture, items of curiosity, toys, stuffed birds, fossils, rocks and books scattered everywhere.  Very few of the rooms are set out into a representation of a liveable state.  There is a kind of reality to seeing the rooms cluttered and packed with curious as they were left.  The house never got electricity until the 1960’s and remains behind the times.

We had been round the house and having gone through the cellars came out into the courtyard by the stables.  My phone rang and it was Nicky from the Memory Clinic returning my call.  ‘Do you have time to speak she asked’, I looked around there was a woman over in the far corner talking with Mr Hs, and I answered ‘yes’.  She then explained that Professor Lindsay had retired and the new consultant had been passed my case. The new consultant again is involved with academic teaching and research.  However, the reason that they will not treat people out of area is because of the associated services that are offered, such as additional support for applying for benefits, support etc.  I can understand what she is saying but I feel totally abandoned.  I don’t want to have to go through starting again with another set of Doctors, more tests saying the same thing.  I feel upset as she is talking, I realise she is the messenger of ‘sorry you are not in our area-not our problem’.  I am sitting on a ledge leaning against the stone of the building in the courtyard, a tear escapes my eye.  I can’t believe that I am getting upset that she is telling me the door to the Younger Persons Memory Clinic is closed to me now.  I think I am scared of the change.  There is no way I want to go to Queens Hospital at Burton, so I will have to go to Derby Royal Infirmary.  They have no Younger Persons Memory Clinic which means I will be treated in a predominantly geriatric unit with Dementia patients.  I am not geriatric, I do not have dementia, and I am scared of being with people who do.  I don’t want to see a possibly older version of me.  There is no involvement with research there, and I am guessing no possible options for new treatments.

There seems little choice but to accept that I have to transfer my treatment to Derby RI.

As I sat and talked on the phone, I pressed the button on my camera and took a photograph. It remains an image of that conversation.

Stress of ending my employment

Last night after I got into bed I felt tears leak out from my eyes and was surprised to find myself crying, although once I realised, I stopped.  There has been stress in my life that I push down and away as I choose not to live with stress anymore.  Stress makes my ability to find words to talk in any fluent way, and my memory dysfunctional.

I received a “Compromise Agreement” from my work with regards my not being fit to work indefinitely and finishing my employment.  I think Compromise is pushing it and a total misnomer!

Right here is the rub; my Doctor has said I can no longer work, I am still employed but off sick:  therefore it would make sense that work dismiss me on the grounds of no longer being able to fulfil my contract of employment.  I WANT to be released from work, but need to apply for sickness benefit because I still have to have nearly three years before I receive my state pension and need to be dismissed/or let go to do that.

Work however, appears to be terrified that I will take them to a tribunal for unfair dismissal so have constructed a legal document that is 8 pages long and requires an additional signature of a Solicitor to say I understand it.  I can no longer work because of Early Onset Alzheimer’s which is never going away and will get worse over time; I SIMPLY WANT TO FINISH WORK….

Of course I am not going to sign such a hideously gagging document when I have no need to, but it has stressed me out that ending my working life seems to be such a difficult thing to do.

Next, I see that I have only received a small amount of sick pay, what is going on?  Why are my employers so inept in sorting it out.  I did not want to use my Union Solicitor but may have to.

I cried because of the exasperation of the knowledge of having Alzheimer’s in the first place, and the stress of not understanding why it is so difficult to finish work.

If you do know what to do – Do Nothing until a natural solution comes along…Image

So I will take my own advice and ignore them.

SHOUTING and pyramids

Today I will share what irritates the hell out of me, and maybe others too.

Okay, here we go….1.  CAPITAL LETTER WRITING

Why do some people write onshoutangryly in capital letters?  You cannot read capital letters without thinking of the advert and HI, MY NAME IS BARRY SCOTT AND I WANT TO TELL YOU ABOUT CILLIT BANG…..    Capital letters are SHOUTING at the top of your voice. It is angry talk.

You shout TO people without listening, you talk WITH people giving them a chance to put their opinions forward.

I have often seen religious writing  that have capital letters, and to be quite frank I find it offensive.  Don’t tell me what I should believe as if it is the truth.  If I won’t believe you if you talk I certainly won’t believe it if you SHOUT, in fact I won’t read it because it is too hard to read writing that only uses CAPITAL LETTERS.   And breathe…..

Next:  2.   PYRAMID BLOGGING..or whatever

Life is too full of what you can get instead of what you can give.  Is there any respectability, or honesty in purporting to write random things to sell the idea that you can make money with the banal?   So lets get this straight…I do not write my thoughts for money…I write, I hope with some integrity because it is cathartic, because it helps me cope with having Alzheimer’s, because I want others to see that having Alzheimer’s is more than dementia and has no respect for intelligence, class, success, wealth or certainty in ones own future.  I want to be able to record my demise in words as it happens – in real time.  Thus you will notice that I will repeat myself in my blogs because I cannot remember what I have already written and have you ever tried to trawl through your writing to see if you have already covered it?  Actually it does show me the errors I write and how uninteresting it is sometimes, not to worry though as I enjoy writing it!

If I wanted to make money from my writing I would write books, although, thank you, yes I am quite aware of my limitation with the written word before you comment!


Rant over, thank you for listening….hello, hello…anybody left out there reading this?  😉

Language and me

My head doesn’t feel right today.  I am slightly off balance, the pain on the right side is stillImage there.   My neck is stiff and painful, my fibromyalgia is bad today.

I have become begun to wonder if the pain in my head is related to my brain cells dying.  Am I feeling the neuroscientific changes as it happens?  That’s a scary thought: to feel the pain of the tangles stopping my neurons from working in real time.  Okay that’s only my fantastical ideas and probably not what’s happening but it feels like it.   Today my memory is worse, I cannot remember my passwords to anything, which is bad news when it is your ??? (can’t think of the word…) = security system!   Yes, I have passwords written down but it doesn’t stop me getting confused as to what they are and whether I have since changed them and not updated them in my shiny purple and gold little book.

It could of course be fibro-fog when the pain gets worse then your ‘head’ gets ‘foggy’ – excellent choice of word for it.

Good news though.. saw my Dr yesterday and she advised me that if I am being treated by a hospital outside of my area I should be able to stay with them…I shall phone SP and let him know that I do not wish to end my treatment there.  We think that he may not be aware that I have been told I am not in the area and cannot continue there.

So that is the goal for next week:  try to remember to phone SP at the hospital.

Right now I am forcing myself to put words down because I am struggling.  I was looking at a blog which I feel is good called “Refined Quotes”  ( provoked replies about language.  The more I read the more I felt that none could feel the experience of language inside themselves.  To quote globally on the nature of language is to look at and think about the experience outside of their own use of language.  To me, I feel that I am experiencing language from the inside, struggling to make sense of instructions and how that shows a confused face of me.  Language has not left me but has become more important as I notice the demise of tiny parts of language that become dysfunctional in my brain.  Language is communicating who you are, if you no longer have language do you fail to be you?  No because communication is much more than language, who you are is much more than language or communication, so why do I feel that the more I forget and the less words I have, parts of me slip away?

Koko communicated with sign language