How do you educate the world about Early Onset Alzheimer’s/Dementia – one group at a time?

I thought about the meeting with the pilot group for Early Onset Dementia and Alzheimer’s on Saturday and how it made me feel and now I have had time to mull it over, I can think about it a bit more dispassionately which is what I need to do.  (Please see the last post for details).

Firstly, am I over reacting? Yes I am, but it is true that many people working with professional bodies; statutory and non statutory, such as the Alzheimer’s Society need some education for their workers. I understand how easy it is to fall into a role of; support worker, organiser, being a person who is outside of the disability or target group, and focus group of the particular organisation, but that does not excuse the organisation from being educated to understand how to ‘walk in the shoes’ of those they wish to support by listening more and organising less.

What were my expectations? Sadly I think my expectations were a little too high for my own good! I should have expected less and maybe would have been content with how the meeting panned out. After all it was a pilot to find out what people wanted.

I have always been adamant that my hubby is NOT my carer he is my husband. I cannot think of a time when someone will need to care for me, and right now my present is important for me to wring every last drop of control and living well out of life. I cannot imagine him deciding what I would like to be doing right now, I have my own ideas and they are definitely not the same as his.

I know my last post focussed on individual conversations and did not elaborate on the bigger issue for me, so I thought I should balance that up so that you can understand exactly where I am coming from.

My issue is with the lack of education about Younger Early Onset Dementia/Alzheimer’s. (I think my next blog will be about the difference between the two so don’t go too far away).

Because Alzheimer’s and Dementia is being diagnosed much earlier than it used to be the Support world needs to catch up. Before, people were diagnosed with dementia only when their symptoms were blindingly obvious and by which time they were not able to understand that they themselves had a problem. This is about what is normal for each individual person, what is normal for one person is not for another, so someones difficulties must be outside their own normality. At this stage the family will be heavily involved (hopefully) in getting a diagnosis for their sibling, parent, spouse, child and also they may well be signposted to the world of Support organisations be it in the medical or voluntary sectors. That is when the services of Alzheimer’s Society has been a wonderful support for those families as a whole.

Today, diagnosis can be much earlier, right at the beginning of Alzheimer’s Disease, sometimes with only mild cognitive impairment (MCI), and as such may not be classed as dementia. The labels do not really matter because basically they are all under the same umbrella of dis-eases in the brain.

You walk out of your consultants room with this devastating diagnosis feeling absolutely shell shocked. You have no questions to ask yet, so are given a leaflet if you are lucky about alzheimer’s disease and dementia. You go home to start the first day of your life as a different person with a terminal disease. You may only be in your 40’s, 50’s or 60’s when you should be looking forward to the rest of your life planning what to do with family, work, or retirement.

This is where the services for people with Early Onset Alzheimer’s/Dementia (EOAD) fail because there is practically no provision. The only groups organised by many organisations are for elderly people and their carers in mid to late stages of dementia which is not appropriate for EAOD.

I started to search the internet for anyone who was like me, who I could talk to who understood how I was feeling and what life was like for me and found several wonderful people in online groups who chose to allow ONLY people living with the disease. I found the Dementia Alliance International, Facebook groups and joined them all. I have become involved in Dementia Mentors a group who can talk one-to-one online with newly diagnosed people to give an honest view with how to live well and positively with the disease. We are people from all corners of the world and I am so grateful to have them as friends. These groups are for those living with the disease in its many forms and are organised and run by the same people. I have been given a voice, and I am not a patient.

We all look to educating anyone we can about EOAD, to understand that we need support but we need to be empowered to do it ourselves.

When I was at the meeting with the ALZ Org I realised that they just did not get it. They had no understanding of Young and or EOAD, probably because they were so used to people with more progressive stages of the disease. They are used to organising people and activities to what the carers have said their partners have enjoyed in the past.

Working with Younger EOAD is different because we can mostly communicate well, and our intelligence is not affected, and we NEED to be in control of what we are doing until we no longer are able to. We need to live normally with our dementia the best way we can making our own decisions, we need everybody to LISTEN to what we are saying, understand what we are saying and not dismiss us to talk to our partners.

Partners do have a role to play in groups we attend for medical or social events because a lot of the time they drive us there, they support when we are there and support us at home, but primarily this should be our group, and there is no reason they cannot support each other at the group. I guess I am saying there is nothing wrong in have two separate sides to a social group, living with dementia on one side, carers on the other, coming together at times and respecting each others voices.

I am going to try and make a difference to the group that met through the workers who got it so wrong on the day. If I don’t try then nobody will learn anything.

Wish me luck as I feel it will be a hard slog and long process.

Thanks for listening.

“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
  • UPSET

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:

I AM NOT INVISIBLE, I AM INTELLIGENT, I CAN STILL TALK TO YOU, UNDERSTAND YOU AND HAVE A DISCUSSION ABOUT WHAT IS GOING ON IN THE WORLD.

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!

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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.

 

Matching underwear?

ImageI was at hydrotherapy today, I began to think of matching underwear.   I was changing into my black lacie bra and grey cotton knickers and suddenly wondered if anyone else was changing back into matching underwear.  A quick glance around showed me that nobody was wearing matching underwear that I could tell.  Phew I felt right at home.

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A jolly little ensemble to lift your spirits

I don’t think I have ever bought matching underwear, not even when I got married!   In fact I don’t think I have bought bras and knickers at the same time.   I am a bargain shopper, one of those people who look for expensive brands that are in the sale, or cheap but tasteful clothes in Sainsbury’s supermarkets.  Thats not to say I would not like some matching sets of silk underwear in a variety of colours and styles to match my moods, but quite frankly I just couldn’t justify spending big amounts of money for such a luxury, but if I did I would not want to hide them under everyday clothes!  So there lies the problem, is it that I wear casual wear, regatta trousers and polo shirt makes me feel like it doesn’t matter whats underneath?

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Dita Von Teese wearing the sort of underwear I would like to own if I did not have so much fat.

I am guessing that maybe business women will be wearing delicate matching sets under their grey business suits and white shirts – or was that in a film I saw once 😉

Slender ladies in slim fitting dresses will probably have silk matching underwear, and curvy real-figured women.

Me, don’t think its every going to happen soon.

Maybe when I next look in Evan the larger ladies shop I will think about it, better not though.

 

Dementia and my Mother

I entered the ward and looked around the four beds searching for my mother.  I saw an old white haired lady lying in a bed moving her head and shouting out incoherently and was momentarily horrified to see that this may be my mother.   I turned around for reassurance from my Dad and husband but somehow I was alone, they had stopped by the nurses station to check it was alright to come in.  Retreating I then followed my Dad back in seeing which of the old women he would go to, the silent ones or the person I believed was my mother, I was not wrong.

My mother has vascular dementia and had been in hospital a week following a deterioration in her physical health, however I could clearly see that her mental health had declined also.

‘Hello, hello’ she is shouting trying to get anyones attention.   ‘Iris’ my Dad says, and she recognises him immediately.  I sit the other side of the bed and tell her I am Gill her daughter.   She looks vacantly at me and then at my Dad who tells her again that I have come to visit her.  ‘Our Gill’, she says with some recognition.

This woman is not the woman I last saw, she had dementia then, but still looked like herself, now she was shrunken, her dead eyes darting everywhere but not on me.  Her hair not combed in the way she like it.  In her hands she holds a small soft toy; a reindeer which the nurses have given her to hold.   She feels safer holding someones hand which she grips with a vice like grip surprising for someone seemingly so frail.

My feelings are so mixed up, this is the woman who damaged my brain punishing me with a ‘smack’ to my head with daily regularity or more.  She forgot she did not like me once she developed dementia and now she is towards the end of her life.  She refuses to have her false teeth in and is incoherent but continues to talk, nobody understanding all the words.  I watch my Father sitting with his hand gripped by her, his head tilted trying to hear with his hearing aid what she is saying.  He fails and just says ‘I’m here Iris, Okay’, then he falls asleep.  Lymphatic Leukaemia makes him tired, the stress of seeing my mother like this makes him weary.

I am listening hard trying to make out vague words as if they are important, as if they are the words I will remember when she has died because this is the first time I have heard her speak face to face in over a year.

She has a pacemaker and a chest infection, her kidneys are not working properly.  Her dementia seems to have got more of a grip on her and she is on oxygen.

I sit.  I touch her.  I have not touched my mother in my life before like this.  I stroke her hand but feel unattached to her.  She looks at me with dull eyes and I don’t know whether she is seeing me or not, or what she thinks if she does see me.  It is too late to talk to her of what she did to me, of how we are, or what she feels about me.  Although somehow I don’t think I ever would.

The nurses come and talk to her, they are kind, they are sensitive, they do not know her like I know her.  But her viciousness has gone…..I see her trying to speak, shouting at the nurse standing at the end of the bed, she is kicking her feet; up and down; I want your attention but don’t know the words to say it – She wants to go home.  That is all that she is interested in, going home.

She knows me and then when the nurses ask who I am she says she doesn’t know who I am.  My father explains that she never sees me very often.  I now have feelings of guilt, but I could not bring myself to visit someone regularly who hates me so vehemently.  I have kept in contact by phone which has maintained my mental safety having spent three years in counselling to overcome the damage she did.

I am sitting there, I am gentle with her, she does not deserve this, but I need this to be like a daughter that has always been part of a loving family.

My Dad on the Sunday we are leaving is ‘off’ with me, I am not sure why.  Maybe this is the old way that they both treated me.  My husband comes down and joins us, there is a conversation which is not conducive to me being a great person.  I ignore it because I know silence is the most powerful tool.  Then I am asked a sexist question so I make it very clear what I think; ‘us women are stupid aren’t we’ I say.  Nothing more, I have made my point that I was listening and that conversation is over.  The subject is changed.

This house is where I grew up being put down emotionally and psychologically.  You are useless, you are stupid, you are a whore.  I was thirteen when my mother told me I was whore.  What is that I thought, I had no idea then.   I left home to escape, to grow into someone who could believe in themselves.  It took me forty years and three years of counselling to get there.

Now I was sitting at the bedside of my Mother, her gripping my hand telling me and all the nurses she loved them.  The pain cuts like a knife.  I have never heard her use the word ‘love’, apart from telling me nobody would ever love me.  Her words feel as empty now as they have always been.

Back at my fathers house ( my old home)  I washed, cleaned, ironed, and tried to make things better before I left to go home.  As we are leaving my Dad says to me ‘I can’t see that she is ever coming back to this house because I can’t look after her’.  There is a sadness when he says this, adding if she ever comes out of hospital.

Family is extraordinarily painful when we have alway been fractured.

 

 

 

Today is another great day

Hubby was sorting out some memory sticks from a cupboard and handed me a pile of mine that I had forgotten I had and on one is some of my photographs that are missing!  I had forgotten I had put some on there so am pleased to have them back. Yay!

Dementia Mentors

Yesterday we had an online meeting for the Dementia Mentors project that I have become involved with www.dementiamentors.com .  This is a site for people WITH Alzheimer’s and Dementia throughout the world, MADE BY people with dementia and Alzheimers.  It is to support people who have been newly diagnosed and show them that we LIVE WELL with these things not suffer from them.

Only people with Dementia and Alzheimer’s knows what it is like to have them so rather than reading a leaflet this site is to reassure the recently diagnosed that we understand and can show that life is just as fulfilling and positive by offering an online meeting with a mentor who really understands.

I did not realise how little there is out in the wide world for younger people with Alzheimer’s and Dementia who still have high cognitive functioning.  Most of the groups and support available is for older and more advanced stages.

Memory Cafe

The last time I saw my Consultant she introduced me to Aileen from the Alzheimer’s Association and we chatted about what support there was available for me which was appropriate, she said she would look into it and get in touch with me.  Today I had a phone call from her to say that she was looking at a pilot scheme for Younger Early onset Dementia/Alzheimer’s people to start a Memory Cafe in the Derbyshire Area.  Brilliant!  I am looking forward to this first meeting to see what it should be like, what do we want out of it.  I do love to get involved in something worthwhile, it gets me fired up with a purpose.

Today is always another day..

 

 

 

 

Disaster on the software/hardware front!

It struck after getting a new computer.  The question was how to transfer photos and documents from my Asus to my new Macbook Pro – yes a luxury that I already love.  I have most of my photos backed up on a Toshiba external drive and needed to format my drive to be FAT or whatever, so copied the files back to my Asus…………….but instead of adding them it didn’t.  Did it overwrite the files? No and I have no idea quite what it has done.  My original files are there, well most of them but my ‘story’ I have been writing (70,000 words so far) has gone, the only copy left is from October 2013 😦

I am mortified, both my writing and my photos have gone, so much for having kept them safe on an external drive.  All my wedding photos but  thank goodness Mr Hsg has got as many as I had.  Apart from the pieces I have posted on here, with my memory problem I will never be able to rewrite what I have lost.  I thought it was safe keeping it on an external drive but no, I should have printed them all out, you can never beat paper copies.

There is no point in being upset, I have to try and continue using what is left.  I have a file with photos that I had include in my writing so can guess what I was writing about and start again.  I will never remember anything I have written without them.

Onwards and upwards.