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)!

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

I have been to London on a train!

I was both excited and apprehensive as I stood on the station at Lichfield waiting for the train to London.  I have loved visiting cities on my own, catching trains, trams, underground, but for the first time I felt a little bit scared of getting confused with my new lack of sense of direction.  This was no problem though because my daughter would meet me at Euston Station and take me to Greenwich where she lives.

Two tubes and a bus ride later, and we were in the house where she rents a room.  Taking our cameras we went to Greenwich Park and as the sun heated up she took me through little shaded paths to where the squirrels scamper openly.  As she sat on the path and got out a packet of monkey nuts, out they came and ventured up to take them from her hand, one after another.  Occasionally one would screech or grunt at her and she laugh.  It is so lovely to spend times like this with my daughter. 

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Feeding the squirrels in Greenwich Park, London

 As she sat I saw a unique side to her, this is someone who I had told could do anything she wanted, and this was it in its basic form.  Whilst people walked by, she simply sat and ignored them and fed the squirrels and coal tits that sat on her hand.  She was engrossed with the moment and the wildlife around her.  This was what she wanted me to experience with her.

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We walked around the park, through the trees following paths that her boyfriend had shown her.  We climbed the hill to the top where the Greenwich Observatory is, and I took her photo standing on the Prime Meridian Line.  The climb was hard and my back and legs were very painful.  The view from the top across the London skyline is indeed beautiful. 

We walked around Greenwich as she showed me her favourite shops and places, she is so at home there.  As we walked we chatted about anything and everything as we have always done.

 Out for dinner at…Jamie Olivers Italian in Greenwich, which we were both looking forward to and had a lovely meal, in a very  relaxed atmosphere.  Back home and to bed as I ached in every joint I have!

 The early hours of Friday morning I was woken up around 5 am by the freight trains trundling along the line at the end of the garden, followed by Claire’s housemates taking showers next door at six, along with a chorus of birds; gulls, jays and parakeets squawking outside.  She says you get used to hearing the constant noise of the traffic also, but I am not sure I would.

Claire persuaded me to stay another night so that we could have another day together, so we set off to the British Museum.  How anyone can remain overweight in London is amazing because there is so much walking even though you hop onto buses and tubes.  I decided not to take my camera so that I could enjoy the exhibits.  The museum was packed, and each glass exhibit was hidden behind groups of mainly Asian tourists taking photos before moving on quickly to the next one.  We started out with the Ancient Egypt part but there were so many rooms and things to see, by the time I was in too much pain to continue we still hadn’t finished it.  She took me to the Dome to look round; it was packed with people eating in the restaurants before seeing Michael Buble who was playing there later that evening.

 Again we had had a lovely day together, chatting as she showed me the sights of London near where she lives.  I am so pleased I caught the train to see her, and will be visiting her more often, but understand my difficulties with directions.

 A couple of times I was aware of my lack of attention, especially when I was looking in my bag on an underground escalator and she said “Mum you need to get off now”!  I had no idea where we were on the underground or where we were going, but Claire did so I just followed her.

 She took me back to Euston Station on Saturday morning to get the train back home, as I would not have found it easy to find my way there and back I came to the peace and quiet of our boat home.

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.

An update on my Alzheimer’s

I feel I ought to stop and have a think about any changes I am noticing.  Well, I think my Fibromyalgia pain has got a lot worse.  We went to the Crick Boat Show and walked round for three hours, just pottering nothing strenuous.  We chose to look around one of the narrowboats built by Wharf House Boats who build bespoke boats that are simply beautiful.  As I climbed into the cratch (front of boat) and sat on the side to have the paper shoes on the muscles in my thighs screamed in pain, getting out was worse.  The distance I can walk comfortably has noticeably changed since last year.  I keep saying that it is because we have not had enough exercise to keep supple, but the truth is we do walk as much as we can.  If we do stay in, I am up and cooking every day, which counts for up to an hour with activity.  My consultant did say that she thinks there is a link with problems such as Fibromyalgia and Alzheimer’s Disease.

Today my throat is sore, my glands hurt and I can feel a heaviness when I breathe; hayfever.  I have only experienced this over the past couple of years, although this year feels worse.  My voice is so husky I could do a good rendition of ‘I was born under a wandering star’ sung by Lee Marvin one of the deepest voices ever!  My neck is painful, but I know it will go once all of the oil seed rape and tree pollen has dissipated.

My home
My home
Where's mine?
Where’s mine?
Boating friends
Boating friends

We sat out with our friends and their dogs on the bench overlooking the marina last night and someone made a joke about a refill of beer/lemonade, but I thought they were being serious and offered some of my lemonade.  When they commented they meant beer, I felt a bit embarrassed inside.  I am aware when I mistake some comment or joke for a serious comment, and that upsets me, it is as if my conscious self can only watch as the automatic self, make mistakes.

I have also noticed that my vision is not as clear, I cannot explain what the difference is but it is different.  Sometimes reading is hard, and I struggle to follow a story because the physical act of reading the words is more difficult.  Reading involves scanning the words either side which are in the peripheral vision linking each one to the last and ahead.  Maybe the processing of the semantics of the words is becoming slower than the visual match, which would confuse my ability to read fluently.  I have always been a fast reader; scanning the sentences rather than read each individual word slowly and maybe this is something that I will have to learn to do now.   I love reading but have to start and finish a book without a break so I understand and remember the characters and plot in the story.  So once I start a book I literally can’t put it down.  When I write  I am speaking the words in my head and not on paper, but can often miss words out when I am typing even though I have spoken them in my head.

I am also letting go of worrying about things I cannot control.  I cannot control how my family deal with life and me.  I used to worry about my daughter, wanting to protect her from all of the harshness of life, now I leave her to sort things out without me.  She has always come to me when there are problems; I can still point her in the right direction, but will no longer be actively involved because I recognise that I cannot.  I simply don’t have the mental resources anymore.  I have always lived my life with guilt (a legacy of my mother), did I do enough; was I a good mother/bad mother; what if I don’t help her sort things out?  However, I have got the psychology degree and know that I am the ‘good enough’ mother which is all we can hope to be, we give children the rules and the tools, and it’s up to them to learn how to use them alone.

Tears and reality – 17th May 2013

Finally I am crying and cannot stop.  Finally Mr Hs has shown his anger with me and has stormed off.

What started it; I asked for the fan on the fire to be tilted a bit because I feared the light hitting it.  Sharp flashes of light sets off a migraine for me and because the sun has moved round in the season it hits the shiny turning blades of the fan with a strobe effect.

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3 Blade ecofan

Mr Hs just blew!  He started talking about the fan not working properly if it is not facing outwards.  ‘So it is ok for me to get migraine?’ I finally commented.  He simply repeated that the fan only works as it should facing outwards.  He then went on to say how I am going on and on that nothing is right; ‘it’s too warm’, ‘it’s too cold’.  He then copied how I fan myself at night when I get a hot flush.

‘What’s wrong with that’ I ask, “I never say anything, I don’t complain, I am just fanning myself cooler?”

However, it didn’t matter what I said, he was going to be angry and would find something that was irritating him to justify it.  He said he ‘wanted to argue’.  What can I say to that, when I do not.

So I cried and cried.  I cried with the futility of my anger at having the disease.  I cried with the unfairness, I cried because there is nothing I can do to stop it.  I cried for the loss of my life later on, I cried for Mr Hs having to deal with me with full dementia.  I am guessing his anger was for the same reasons.

I don’t blame him for his anger.

I am so sorry Mr Hs, I wouldn’t have put this on you had I known before we met.

It felt like a glimpse of my future, with Mr Hs getting irritated by my Alzheimer’s because he is angry and I am no longer able to stand my ground, and I cried for my helplessness and his helplessness.

He got dressed, left the boat, and busied himself with filling the tank with water, bringing the bag of soil for my pot plants and generally pottering about.  When he returned later, the anger had dissipated, but the air was heavy with the words already spoken.

But he had thoughtfully sprayed the shiny blades of the fan black.

Later when we had got into bed he kissed me goodnight healing the words of the day.