Same appointments different places – 17/01/2014

I forgot my first appointment of the year on the 2nd January the at Mental Health Services.  Chelle phoned and we arranged another appointment.  She was very serious as she spoke about us about thinking about care later on when I need a full time carer.  I tried to say that Mr Hsg will never be my carer because he would not be able to cope, but I think other people find it difficult to acknowledge that a spouse simply would not be able to care for someone with dementia; of course they would for as long as they were able then residential care would have to take over.  Wrong.  I already know he is not able to take anything over from me now, he does not get involved in remembering when my appointments are, where they are or who they are with and he is already saying “what do you get from going to see any of these people, you don’t get anything from it”.  I try to explain why it is necessary right now, making sure the services are there for when I need it, getting my medication right, or simply monitoring any changes. It is only because I have transferred to local hospital services that I am seeing these people for the first time.  I think Michelle finally got what I was saying when she said that we had to think about what would happen to me at that point, to which I replied that I would have to go into residential care somewhere.  She said she would contact the dietician to talk about how to write down about my Irritable Bowel Disease and my intolerances in a way that would be taken seriously at a time when I can no longer cook.

The next day I had an appointment at the Doctors Surgery for a dementia screening.  When they phoned me with the appointment I said “I don’t have dementia, I only have AD at present”.  The doctor was lovely but clearly thrown by my lack of dementia.  She attempted to explain to me that you cannot have Alzheimer’s without Dementia.  So I had to explain to her how I managed to get a diagnosis of AD without Dementia.  She diligently read all the letters on my file, and concurred that I was very unusual.  However, this appointment felt like we were saying the same things two days running; no wonder we are both fed up with appointments.

Chelle said that I had an appointment with my Consultant at Oaklands, although I had not received an appointment letter.  Having seen her in Derby previously I Googled it and found Oaklands, Mental Health Services, so we set off.  When we got there it did not seem to be the right place and we went into the office to find out where we should be.  They looked me up on the computer and said I should be at Oaklands in Swadlincote!  She printed out the letter which I had never received and in capital letters at the top it said “Please note new venue for this appointment”.  Back in the car we drove from Derby to Swadlincote and found Oaklands Village a new retirement village.  Oh my, it was impressive, wood and glass, and full of seemingly happy people.  A bistro restaurant, café, hairdressers, library, crafting rooms; I could see people sewing in one, soft furnishings with groups of seating for people to sit and chat, and apartments.  They have a surgery for visiting consultants and my Doctor has a weekly surgery there.  We discussed my medication and talked about support groups, she introduced me to someone from the Alzheimer’s Organization who has an office there. She talked about the groups around neighbouring areas and what they do, but it became apparent that these groups are for stimulating memory for people who are further on in their Alzheimers journey.  I talked about what I would like; a more social type of group who could understand each other difficulties, to be able to talk without worrying what people think when you cannot find a word and gaze into the distance as you are desperately searching for it, not worrying that they will stop talking to you because your conversations become difficult, with the flow of words drying up mid-sentence.  Elaine understood exactly how I was feeling about it, which was so nice.  She said I was unique in the fact I was diagnosed so early that there may not be anyone else as early diagnosed as I am.  There’s a challenge if ever I see one!  She said she would talk to her line manager about it, just because there is no group that doesn’t mean that one cannot be set up.  I told her about my writing and she was amazed commenting that I was writing a PHD….food for thought there (not for a PHD exactly but I could do my own study as I go)!

Time has flown by, I need to catch up!

Christmas 2013

What a conundrum this year, my daughter has asked us to spend Christmas with her in London.  Mr Hsg has always made a point saying he never wants to go to London, so what to do?  The solution was that Mr Hsg would take me to London on Tuesday – Christmas Eve and return home, and would pick me up on Friday.  That way he would not have the stress of being somewhere unfamiliar and could remain with the cats.

How fabulous are these slipper socks!

 

We got up, made tea and coffee, and opened our presents.  C had knitted me a pair of slipper booties, they are brilliant!  She also made chutney this year which has delighted me immensely.   Such thought and effort that she put into my present.  She made chocolate truffles for her boyfriend’s parents that looked divine in the box she had carefully chosen.

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That dinner was far too big!!

Her boyfriend went to his parents to have Christmas dinner, whilst C and I cooked dinner together enjoying catching up with chats that I miss so much.

We had been invited to join C’s boyfriend’s parents for drinks, as this is a serious relationship they naturally wanted to meet me.  I admit I was very apprehensive as there would be several other people there and I struggle sometimes to chat normally with people I don’t know.  The stress makes my loss of words worse unable to finish a sentence.  “Don’t worry” C says to me, “everybody loses words when they talk, I think you make too much of it”.  She has always found it hard to acknowledge any illnesses that I have had, and ignoring them to make them go away.  I have to talk to her about it sometimes though so that she understands my behaviour.

We walked from her house to Greenwich Village to J’s parents house, I felt sick with apprehension and too much food!  I realised that at home my plate is small but our Xmas dinner were plated on normal size dinner plates – delicious but not good for my digestion.  Of course I declined the suggestion that we get a cab, and welcomed the 30 minute walk.  The evening passed very pleasantly with lovely friendly people and a large glass of water.

Boxing Night was a real treat with a trip to the Haymarket Theatre to see ‘One man, two Guvnors’ with J’s parents.  It was excellent and very funny, a great way to spend time.

It was so lovely to be with my daughter, but I looked forward to going home with the peace of the boat and our quiet lifestyle.

When I think of being with people I don’t know I worry that I say the wrong things, inappropriate and isolate myself.

Canal trip, and rant

Waiting for the lock to fill
Waiting for the lock to fill

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.

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This is Ella patiently waiting for a mouse
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Beautiful sunshine, canals, what more can you ask for
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Traditional breeds of cows being bred here

And now to cook a meal for us.Image

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.

Why I dislike off road cyclers…

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We decided to go to Cannock Chase for the day, and headed for the Wildlife Trust’s Visitor Centre.  Being Sunday it was packed with families, mainly playing in the playground on the swings and such.  So having chatted to the woman inside we aimed for Penkridge Bank by car.  It was clear that this walk was also favoured by bike riders.  The sun warmed the April air a treat, and we set off with our camera’s looking for adders curled up asleep amongst the bracken.  So, as we set off our eyes are scanning the undergrowth aside the path, but all I can see is discarded rubbish.  We continue the walk weaving through the trees, grasses and heather, I am looking for something of interest to photograph.  I like to take pictures of things that I think would take an interesting picture, sometimes arty, sometimes a different view of something historic.  The longer we walk the more despondent I felt.  The amount of rubbish increased the further we walked.

I am stunned at the way people fail to see what damage they do the area with their bad habits.  As we walk the pattern of litter becomes apparent.  Probably the biggest offenders to littering are young men off-road cycling.  Discarded plastic bottles of power drinks, empty Snickers wrappers (for quick energy intake) are littered along the path that they follow.  Summer has not yet covered up the rubbish, so it felt somewhat desolate, this public area of beauty.  When the get back after the miles riding this rough terrain, they strap their bikes onto the back of their sports cars, or load them into transit vans and leave without a second thought to what they have left behind.  Why should they, their goggled eyes are only facing the track in front and not the rubbish they discard, they are not there for the peace and natural beauty, they are only there to beat their personal best that their toned muscles can endure.

These are my days of enjoying myself, of forgetting my health problems, and of being stress free, experiencing a lovely, quiet life whilst I am able.  Having to see how little others care what they do upsets me.

Amongst the litter I saw plastic sheeting, 33 Captain Morgan bottles with the labels removed, Burger King coffee cup, burnt tyre, shattered glass, burnt wire, polystyrene burger box, carrier bags, curry bag, beer bottles, and sweet and crisp bags.  What is wrong with people?

Men on bicycles ride non-stop, they have a route and know how many miles it is that they ride, they drink water; power drinks and throw the bottles, when they need some energy there is nothing better than a chocolate bar such as Snickers with peanuts and chocolate.

A small selection of discarded rubbish

A small selection of discarded rubbish

This is less than half of what I captured on my camera.

We shall not be returning to this part of Cannock Chase but the area that is less frequented by bikers and walkers.

When my daughter was small, all of my pockets and bag were always full of rubbish ready to place in a bin when we saw one, or taken home.  She would not dream of dropping litter spoiling the countryside or towns and remains the same today as an adult.

The question remains, who brought these people up to think it is okay to drop litter wherever they feel like it?

“The End Game”

Sir Terry Pratchett

I wanted to watch the TV program:Terry Pratchett’s Jungle Quest – Documentary about orangutan conservation shot on location in Borneo.

It was as much about orangutan conservation as the man himself living with Alzheimer’s Disease (AD).  Because he is lucid, I needed to feed on his words and experiences of the disease.  I read the article below in my quest to know how others experience their own demise.  http://www.dailymail.co.uk/health/article-1070673/Terry-Pratchett-Im-slipping-away-bit-time–I-watch-happen.html  

 There have been several quotes by Terry Pratchett that I can identify with.

“It occurred to me that at one point it was like I had two diseases – one was Alzheimer’s and the other was knowing I had Alzheimer’s.”

This is probably the quote I that strikes me most.   Knowing you have Alzheimer’s is like being secretly give the date of your death and not being able to stop it or control how you will move towards it.  It is like watching yourself in an out of body experience and not being able to intervene.  The main thing is that nobody around you can imagine for one second how devastating it is to understand, and feel your own mental cognitive breakdown.

“There were times when I thought I’d have been much happier not knowing, just accepting that I’d lost brain cells and one day they’d probably grow back or whatever.”

 “You can’t battle it, you can’t be a plucky ‘survivor’. It just steals you from yourself. “

“One of the first things to go was the touch-typing. Kind of a bugger , I thought.”

Pratchett has posterior cortical atrophy (PCA), a rare form of early Alzheimer’s, which affects the back part of the brain responsible for recognising visual symbols.

Reading the words of Terry Pratchett strikes a chord for myself, I too feel the same, and noticed my touch type ability failing.  The difference of him between 18 years, is striking because it highlights the loss of his mind now.

He has talked about the fact that people talking to him would not know or understand what was wrong with him, if anything.  Being coherent does not appear to match Alzheimer ’s disease, but it is the beginning.  It will change.   He ‘came out’ to the world about his diagnosis which contravenes the way we usually treat the disease with embarrassment.  I feel embarrassed about everyone knowing I have Alzheimer’s and will deteriorate over time.  I am not sure why I feel shame about my friends knowing.  There is part of me that wants to say it out loud, and not worry about how they will deal with it.

I had a difficult conversation with my brother the other day which was family related and which left me feeling sad.  Because we live far apart I emailed him and said that ‘I know I sound ok, I am not ok’.   It is hard saying it, and admitting it.

Terry called his AD The End Game’.   I guess this is my end game too now.

Terry continues to write, to tell the stories that imagination has always built inside his head.  I applaud the way he simply gets on with it.  I still have dreams of what I want to do and will endeavour to do them.