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.

1st February 2014

January has brought lots of rain and with it floods. Whole areas in the Somerset levels have not drained away and remain as a new sea. The radio is full of politician speak; full of meaningless sentences about how they ‘have people and money in place and long term strategies, and plans for the farmers to take responsibility’. So now it has become ammunition for political parties. A village has become an island for several weeks with children taken to school by boat. The authorities have installed Portaloos in the pub car park because the villagers can no longer use their toilets. The Army has been invited in to help with logistics, and the argument rages on about whose fault it is. The truth is, we use more land for crops and animals having ripped out the hedgerows, and ignored maintenance of ditches, plus we have more rainfall in the past few years. Rivers and canals have stopped being dredged and along with the loss of the trees that thrive on the excess water has created a problem. Historical land management can still teach us lessons if we choose to listen.

Russell Brand has been slated by the media because he said that young people should not vote as it is a waste of time with only ‘one political party with three heads’. They say he is irresponsible to tell the youth this and encourage the young to vote to change things, but I don’t think the politicians ‘get it’ at all.

Both Mr Hsg and I cannot listen to Radio 4 early morning because it is simply political garbage. Does no one speak honestly anymore? Presenters ask a question and there is no direct answer only party line answers. It’s a game that nobody wins and everybody loses.

Canal trip, and rant

Two weeks have passed since we left the marina, everything is back to normal and our travelling is becoming very enjoyable.

I have seen a Water Rail bird, a stoat, Mr Hs watched a badger through his binoculars. We have left the Trent & Mersey Canal onto the privately owned Bridgewater canal which is wide and relatively well kept. I have taken photos along the way of graffiti, interesting buildings and nice canal areas.

We have met some interesting people, and I have had some great lads help me on the locks. Two were smoking their joints wrapped in licorice papers, but were friendly and helpful. A group of boys eagerly helped asking a myriad of questions about the boat, how the locks work. We saw a group of idiotic children behind up stripping off and jumping into the locks to swim, if only they knew the dangers they were putting themselves in…

We have been down the Anderton Boat Lift to the River Weaver, and spent two days in beautiful soundings. We came back up the Anderton Boat Lift and carried on the Trent & Mersey. Mr Hs decided to that we would continue up towards Liverpool & Leeds and head up North. He didn’t wait for me whilst I was in the bathroom to go through a lock and nearly caught the boat on the cill, bending the rudder. I guess he wanted to prove to himself he could still do locks single handed.

Yesterday we climbed through 27 locks, the first two, then the 25 locks of the Wigan flight. These were double locks for two boats at a time, with big and heavy gates. I had struggled with about five before we were joined by another boat with plenty of bodies on board to help at the locks. These were locals and had it planned to a tee..one guy went ahead and set the locks up ready, and two others worked bringing the boats through. What would have taken us about eight hours, took two. Phew! thank goodness they came along. Back on the Liverpool & Leeds canal we saw how little maintenance the Canal and River Trust has been carried out. The locks were in bad state with rubbish caught in the paddles making them leak and unable to work properly. The anti vandal locks were not always working which meant that one pound had drained of all water and we had to refill it before we could progress any further, that meant sitting in the lock for an hour because the pound had enough water to get to the next lock.

The water had dropped about two feet down the flight, which makes it dangerous for boats getting caught on cills, leaving the locks and sinking which happened a few days ago.

There is no apparent work being carried out by CaRT to keep one of Britain’s heritage in working order for the benefit of all.

Once upon a time British Waterways employed Lengthmen who lived in lock-keeper cottages and looked after a length of the cut (canal). The cottages were sold off, and there is no one to care for, monitor, and be the eyes and ears of BW’s. The breach of the canal at Dutton could have been avoided had there been a lengthman who would have seen problems. At flights of locks one or two lengthmen could help, and monitor what was happening. Volunteer lock helpers are encouraged by CaRT to get boats through locks quickly and safetly, but they only appear to want to work on nice rural locks that boaters themselves would prefer to do. I understand that recently CaRT decided they could make some money by charging companies who offer their staff as volunteers during team building days. Now, I know that sometimes I have problems in understanding some things but that seems ridiculous. Needless to say a charge would negate volunteering and also stop it.

Anyway, we are now moored up opposite a golf course, and resting our weary and painful joints and muscles after yesterdays workout!

Out of the marina and away…..

The big cruise. We set off out on the cut on Sunday 28th July 2013 unfortunately it was not in good circumstances as Mr Hs suffered a bit of ‘rage’ at me because I asked a question three times. I was just as shocked as our boat neighbour who discreetly disappeared into his boat, until we were backing out of our pontoon. As we continued along you could have cut the atmosphere with a knife between us. Fortunately I am not the sort of person who accepts bullying and abuse. However, this is out of character for him so I have no idea what is going on with him. As we were travelling he said sorry, but I should not have asked him more than once. “I have Alzheimer’s” I said “Its what I do, I can’t help it, its not my fault”.

I had been excited for this day when we could travel, having spoken to my doctor who phoned me two days previous and said she would contact the new Memory Clinic and tell them I would be away until October.

We moored up for the night, among trees having to use mooring pins in very soft soil, the mooring ahead of us with rings was occupied. In the morning Mr Hs suddenly had another rage at me, this time shouting and swearing leaning in towards me as he did so. I held my hand up and talked quietly and calmly to him telling him to stop. He told me I was the problem why he was raging, but I was not the one who had lost control of my temper! At that point he got dressed muttered something about going back and left the boat. I sat on the back in a chair drinking coffee, reading my book. Something was wrong and he was taking it out on me. I called my daughter and talked to her which made me feel better, and he returned two hours later as if nothing had happened.

Moving on…….

We left and continued our journey, the countryside full of lovely long grasses and wild flowers. A field of traditional breeds of cows such as the Longhorn, all suckling calves. What a delightful sight to see.

After a few hours we moored up with fields on either side, we let the cats out and they explored the bank and the hedge. Ella sat with her eyes firmly fixed on whatever little secrets were further in until she eventually came running into the boat with her (very small) kill. I could not see what it was because she ate it all very quickly! Daisy just wanders sedately up and down, not straying far but enjoying the freedom. Today we left there and continued on our way towards Stone, and then Stoke. It has rained, been incredibly hot and humid.

I have seen a Water Rail in the reeds, and a large flock of Greylag Geese in a Stafforshire field. Ducks have got their second fledglings this year and we pass them at various ages.

Before we have reached Stoke, we have moored on a concrete edge looking across marsh one side of us, and a railway line the other side of the canal. We can’t let the cats out because of the bycycles coming along the towpath at speed.

This is Ella patiently waiting for a mouse

Beautiful sunshine, canals, what more can you ask for

Traditional breeds of cows being bred here

And now to cook a meal for us.

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.