“I feel like something at the bottom of a woman’s handbag”

Saturday – 28th June 2014 – Alzheimer’s Meeting

I was invited to a meeting to form a pilot scheme for younger people with Alzheimer’s and Dementia. It was quite a way to drive and we got to a place which was in fact in a building in a Chemical Company which supports the charity Alzheimer’s Organisation; their conservatory which is on the side of a very nice cafe/restaurant.

There were workers from the Alzheimer’s Organisation from three different surrounding areas in county and I got to talk to two of them. The are all enthusiastic and clearly caring people.  People arrived gradually until there was a good roomful of people living with dementia and their partners and carers. I initially talked to two of the staff full of enthusiasm and I passed a couple of flyers for Dementia Mentors website which they said they would look at. As others arrived they seemed to know each other I think from another group they attend. The conservatory had tables and chairs set out in a cafe setting and people came in and sat randomly around the room or in groups of friends. Because of how we were all sitting facing some with our backs towards others it was not conducive to chatting and getting to know anyone you didn’t know, which for us was everybody. No sooner everyone had arrived, we were told to split up into three groups and talk about what sort of group we wanted. The friends stayed where they were, others gravitated towards the far side of the room and hubby and I were asked if we would join the table behind us with just two people on because the guy had mobility problems. The guy I shall call Sid clearly had mid stage dementia and did not speak or appear to have awareness of what was going on. His partner on the other hand did not stop talking. We had a worker with us who was going to facilitate this discussion between the four of us.   (All names have been changed to protect peoples identity).

Phil the worker was enthusiastic and started throwing some ideas about for us to talk about and ‘Sally’, Sid’s partner started to talk about what she wanted from the group. I don’t want to see leaflets on tables, she said, I don’t want to hear anything about dementia, I want a social group where we can go out and enjoy ourselves. Right, that is perfectly clear. I am tired, she explained, of everyone talking about dementia, I want somewhere where that is not about illness at all.  (Actually Sally, I think you need a support group for carers and some respite care for Sid, I thought at the time).

I had up until this point given some ideas, discussing a newsletter, learning new things in their new life with dementia, such as photography, cooking, creative writing mini courses, days out doing group photography, walking etc. The more Sally talked the more puzzled I began feeling. Hang on, I thought we were here to talk about a group for people with dementia, at least that is what the conversation I had with the ALZ worker I had met after being diagnosed who said there was no support groups suitable for me. I could not assume that Sally was Sid’s carer and I had to know, so I asked her if she had dementia? No, she answered, I am with Sid. I had this sudden realisation that no-one had asked Sid what he wanted, so I asked him. With his progressive dementia he couldn’t really give an answer, he goes to another day care place and does a lot of memory activities with them, and seem to be confused about where he was as he was talking. He sat not speaking having difficulty holding his mug of tea, Sally telling him to put it on the table before he spilt it down himself. I could see my hubby watching and wondered what he was thinking. Sid did not appear to want to put the mug down, or do as he was being told. Sally was off again saying the things she wanted to do, and I spoke to Sid. ‘Only people with people who have dementia can understand what its like to live with it’ I said to him, and he nodded in agreement. I asked him about the day care he goes to and he tried to talk to me about it. He then said, probably the most important thing that was said in that room “I feel like I am something at the bottom of a woman’s handbag”. Do you mean being here I asked him pointing around, ‘No’ he answered. Ahh you mean all the time I put back to him understanding how he was feeling.

The more I listened to Phil and Sally talking, and hearing the animated voices around the room the more I realised my expectations were far too high and I was not enjoying the experience.

The discussion was over, time was up and it was time to go! Before I left I briefly spoke to a worker and said that I thought it was going to be about people living with dementia wanted, and was a little disappointed to hear so many carers saying what they wanted. “I guess it is about both” was the answer.

Okay, how this meeting made me feel:

  • Angry
  • Silenced
  • Invisible
  • Like being treated like a ‘patient’
  • Cheated

I thought this was going to be about what we, the people with dementia wanted out of a group for support and social activities that we could do with others, and that includes partners and carers who understand that sometimes we say the wrong thing, behave in a way that may not be quite right.  It is right the partners should be there, but let all those who live with dementia, have their own voice, their own control, and their own place to keep their minds active, not something that is organised by everyone else.

How many websites, groups, and advise site both professional and amateur are there for carers. How many forums are for carers?  Many.  Why is this, it is because what do you think when you hear someone has dementia?  You think of an elderly person towards the end stage of the disease, not always knowing who family is, someone who has lost the understanding of what is happening around them, someone who may be shouting out and being difficult and finding it hard to communicate.

Well that is at the end stage, not the beginning, how do you know that you do not already have some kind of Alzheimer’s in the making? Give it a few years and when you know something is ‘not quite right’, something simple such as your visual perception not working right, not keeping up with work, you will be wondering whats wrong. If.. if that happens and you are in your 40’s, 50’s and 60’s you will want people to treat you as they would want treating themselves, not to talk as if you no longer have a voice or part to play in the control over your own life.   Memory Loss is not loss of intelligence, get it?

I just want to finish saying:


Please don’t think that by helping our husbands or partners that it equates to giving support to me.

Thank you for listening if you got to the end of this.

Shame on you CURVE of Leicester!



I had booked the tickets for two friends, my husband and myself ages ago to see JESUS CHRIST SUPERSTAR written by Andrew Lloyd Webber and Tim Rice in 1971 at CURVE in Leicester.  No, I have not missed a word out it is not ‘The’ Curve, but simply ‘CURVE’, now try to talk about it without saying ‘the’ – impossible!  Woe betide anyone putting a ‘the’ in front of it when in Curve building itself.   See even that sentence begs to have a ‘the’ inserted.  I digress.

My friend Karla and I had been to the Curve there before, the last time to see Rocky Horror Show, that’s another story in itself, and she also works there on an adhoc basis and that is also another story in itself, so we like theatre.  I must add here that she is also part of the production team at Market Harborough Theatre, so knows a bit about theatrical performances.  I am digressing again.

The words Amateur Operatic Society never made any impact on us when we booked the tickets, because after all this production was at CURVE and they are up there darling with the best of theatres.  My other friend Sheila loves musicals and knows ever word to the songs so she understands a thing or two about performances.  Hubby, well he is from Essex and LONDON is where he used to go to see shows so is used to the originals by the best performers.

Hang on there, before you think that this is going to denigrate the LEICESTER AMATEUR OPERATIC SOCIETY it is not.  HOWEVER, sadly it was not their finest hour.  Set in modern day the stage set was metal steps either side the stage towards the back as a V shape, with a triangle of light panels at the top which was lit to highlight the performers when they were at the top.  As always a live band played down in the pit in front of the stage.   Sitting comfortably in our generous seats with plenty of leg room – well done CURVE, we were excited to enjoy the evening.  This is about the appalling sound levels set by the very professional team at Curve who somehow ruined the show by their negligence.

Karla turned to me and said “I hope Jesus is a tall dishy looking guy” or words to that effect, I agreed, there is nothing wrong with eye candy especially with a voice.   Lights down, and there were people rushing back and forth on the stage – not sure what that was about but it was part of it, then Judas Iscariot came on and screeched his way through the opening song; he did have a high voice, but the level of the music was so high it did not help.  Hmmm okay.   Others joined him and I wondered which one was Jesus, and realised that the guy who was nondescript with short hair and very little stage presence was him.  Again when he sang his voice was drowned out by the enormous sound of the band.  Mary Magdalene was excellent, she had a lovely voice and very good stage presence and her solos were gratefully heard amongst the music.  At times the music drowned the singers, at times the singers appeared to be screeching to be heard above the far too loud music.   How could CURVE sound engineers get it so WRONG?

Despite the sound levels being so wrong, it was an entertaining evening not least because of the cast themselves.  They gave their all but looked utterly defeated when taking their bow at the end of the performance, as sadly, the polite applause throughout the musical was not what they hoping for.  I think a lot of family were in the audience cheering on the final applause but there was no second curtain call at the end.

What was so entertaining was that my friend Sheila sang most of the songs with a good voice!  There were two very elderly gentlemen in the cast either dressed in suits that could have fitted better (when you are on the vertically challenged side then long jackets make you look like you have no legs), and then as policemen who looked like they should have retired 20 years previously!  I kept noticing a senior lady appearing in the cast and then disappearing, obviously a valuable member of the singers, she was unable to take part in the dancing so disappeared from stage.  At the end in shiny dresses they descended down the step singing and bless her, there she was struggling to get down each step with the others.  Jesus was put on a cross with a bicycle saddle to sit on, very ingenious, and the cross was raised and fastened to the floor, by several people including one of the stage production engineers who came on complete with walkie talkie fixed to his belt etc, thank goodness he matched the cast who were all wearing black trousers and hoodies at the time.

Please don’t think I am making fun of all of this because this is exactly what I love about amateur productions.  I love how it is not the perfect beautiful people who are allowed to be stars, I love how anybody and everybody has a real part to play.  I love the rawness of the production.  My disappointment is with THE CURVE who clearly let these singers down by failing to take them seriously.  If they had done they would have made sure the sound levels were good.

Hubby left after the first half and did not return because he could not cope with the sound, as did several others.  He waited outside, had coffee, walked around the corridor in the round building, and met a critic who had come to review the performance, who was equally appalled at the incompetence of the sound engineers to get the sound levels right.  As we left we saw him talking animatedly to a member of the production team.

I would REVIEW this by saying I had a great fun evening,  I enjoyed their efforts – WELL DONE Leicester Amateur Operatic Society.


This might offend – I don’t believe in god

These are my thoughts on religion

I don’t believe in god and like to think myself as an Informed Atheist.

My parents are Methodists and my sister and I were brought up to attend Sunday school every week and I finally stopped my association with the church when I was 18.  At 16 I had become a Sunday school teacher myself and grew to question the material I was given to use in the lessons.  I did not believe that god made the world…nor anything after that.

My mother told me I was wicked and evil for not believing in god.  The more I thought about why I do not believe the more I wanted to explore religion in general.  It felt like being on the outside of a tank studying the contents but not being part of it.  What I saw in religious history was social control by men during a time when they wanted power in their societies, and there being no better way of doing that with a god that no one could dare to question.  With that came the power of the religious men who ruled the nations each with their own brand of religion.  Listening to people talking about how everything ‘is gods will’; is to me hearing how no-one wants to take responsibility for their own actions or accept that things do happen without a reason – deal with it and move on.  We all die of something, whether our bodies can no longer regenerate cells and repair itself, or illness; that is natural, there is no design by a deity when that will happen.  Death by war, accidental death or murder is not natural and is caused by man.

I studied the History of Science at the University of Leicester and for my final year I chose  ‘Science and Religion’ with Professor Brock and this is where I learnt how different religions have been constructed from the beginning of the human race.  There were seven students in this class and some who were devout Christians,  I asked one fellow student if it dented his belief in god and he replied that it did not change his belief in anyway.

We learnt about the bible and how long it took to write, the context of the times it was written, and re-written, culminating with the study of the learned men who research the original writings and various translations which changed the context of the writing.

Throughout history the revelation of scientific theories has meant that religious belief has had to be adjusted and manipulated to cope with the anomalies.

The increasing explosion of population puts a strain on geological and other resources so men fight for their patch.   In 1798 Thomas Malthus wrote An Essay On The Principle Of Population which I read in its entirety.  Thomas Malthus was a minister who within his writings talked about the earth only being able to sustain the number of people it can feed, the same as animals.  Yes, his writings were very controversial and certainly racist, but he approached the idea of people’s relation to their environment theories that Darwin and Wallace would have read and pondered upon in their evolutionary theories. Darwin struggled with his religious belief after publishing his Origin Species, although came to be content with god designed evolution as well.

When I look at Islam, I wonder why any god would decide that women were inferior and not seen with equal power in society.  Here is where I say: please don’t try and convince me that women are not repressed as human beings in the Muslim faith. Nature vs nurture – Muslim girls grow up being taught their place as decided by Allah/Patriarchal leaders and male followers .

Circumcision in girls – so that is acceptable?  No of course not, but it is done in the name of religion for no religious reason that anyone can fathom apart from the repression of women by the men who rule in the name of religion.

I am not advocating women’s liberation because that is a nonsense; we are human beings with different strengths and weaknesses that give us a natural ability to survive as a species.

The more I read and studied the more I understood what religion is and what its effect has been on the world.

War is being raged in the name of religion and it matters not which faction of religious parties are fighting or in which country because it is about power of male leaders in countries where on the whole, women are repressed and dominated.

Faith;  why should people have the need to have faith in something to be happy.  Without faith most people would be unable to cope with mans ability to be so cruel, so inhumane.

Okay, some would say where does ones sense of morals come from if not from religion, although its debatable whether all religion have a good sense of moral living.  The need to survive in animals creates tolerance throughout the animal world, and we are just another animal who happens to have evolved a larger brain.

I have Alzheimer’s and Fibromyalgia, and hypermobility so that I now have arthritis.  I have a headache in the right side of my head every day which I have had for several years.  It turns out I may have brain damage from trauma to my head as a child (my mother always aimed for my head when she hit me regularly).   These things just are; some is a genetic predisposition, the damage of my brain comes from someone who believes fiercely in god.  Ironically my mother’s own vascular dementia was first noticed in church, having gone to the toilets and not able to find her way out again.

I cannot understand why anyone needs to have some higher person to be able to love themselves, to know how it feels to be a nice person and not hurt anyone else, and enjoy each day without the promise of a (non existent) heaven. To know what is good and what is bad.

I simply, have no need for faith or religion.

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?  😉


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