Community

This afternoon I sat at the bench on the grass at the end of the pontoons.  I had a book and a cup of coffee.  I had not been there long before another boater turned up with his dog Lewis and his ball.  Lewis does not have an off button.  You throw the ball and Lewis brings it back, then demands to be thrown again.  He does not give up..It is tiring watching him.  He came and sat at the table, then T joined us, followed by S his wife.  We all sat chatting.  Mr Hs had gone into my work to collect some paperwork which I could not deal with.

Meanwhile we sat and chatted, we saw a lorry wending its way round the marina, and deduced it was delivering the bench seat for Jean who died earlier this month.  The bench was put on the hillock by the bridge overlooking most of the marina.  We all walked to see the bench which had the inscription from her husband that binds her to the waterways, canals and to Bromley Marina.  We sit, talk, stand and she is there with us. The community of boaters is strong and we respect her memory.

Later when Mr Hs returned from picking up some paperwork from my work, we all sat and chatted.  I struggle to keep up with the humour because my emotional side has been damaged.  There is part of me that feels very isolated, very alone in a group of people.  It is like I am no longer a member of the human race, I am now outside of it.  I feel sadness that I no longer feel part of a friendly group, and they have no idea.  If I said anything to them I don’t think they would know how to deal with it, such is the problem with society.

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.

Memory Clinic and Driving

I had a call from the memory clinic, could I come and see the new Psychiatrist so that she sort out the form from the DVLA regarding my driving licence.  My Consultant Prof L, retired at the end of March and the new one could not confirm whether I was still fit to drive without meeting me.

She read my notes, talked to us about whether I thought I had any problems driving and we  ran through the usual test of the date, year, copy the shapes and count backwards from 100 in 7’s.  This is where I fall flat, I have always have problems with numbers and maths.  To me numbers are squiggles on a page that are meaningless, I do not see any patterns, connections, and I fail to understand any theoretical reasoning.  Quite simply I am absolutely rubbish at maths of any sort.  I got as far as; 100, 93, 86…. And that was it. Last time I had less difficulty.   My memory is visual, and so if I cannot visualize the amount say in, dots, I have difficulty in working out a strategy to come up with an answer.  Mr Hs has said he ‘takes away 10 and adds 3’, I am not sure I can still get my head round it.  Does this mean that my ability to process information has got worse or it is dyscalculia?

She explained the reason for my referral to a hospital nearer to my address.  The Younger Persons Memory Clinic is no longer taking people 60 years of age and over, also that all the services offered need the patient to be in the area.  Fair enough, so Derby will be the best place for me.

We talked about the medication of Rivastigmene being dispensed by my GP which is fine.  I told her of my experience of the medication enhancing my sense of the smell of food triggering a hunger response, which she immediately noted down in my notes.  She then proceeded to tell me of her Research Paper published regarding Dementia and smell. I believe she is the only Doctor to have published on this area of research.

I asked Dr V if she could arrange for paperwork so that I can donate my brain to Alzheimer’s research, and she was thrilled, because there is a lack of brain donation which holds back development in the treatment of the Disease.

She asked me whether I would be interested in taking part in her current research into bio markers, and I immediately agreed.  The neuroscience of my disease fascinates me and I think understanding what is happening physiologically and psychologically helps me accept my future demise.

Something that confuses people is the diagnosis of ‘possible or probable’ Alzheimer’s.  Dr V said confirmation of the disease can only be made post mortem!  Then she said that the correct diagnosis is Alzheimer’s Dementia.  ‘But,’ I exclaimed, ‘I don’t have dementia’, she started to explain that there is no set time when ‘people’ progress more rapidly with the disease.  She has known a patient to be still without dementia after 13 years, and one after only 2.  Like everyone we talk to she talked about enjoying life as much as we can now, and it scares the hell out of me.

I always thought I was a person who accepted things as they were so that I could focus on everything else, but it seems that I want to fight this, which of course I can’t.

 To explain how I feel I imagine that If you have to have a limb removed through disease, you may despair and desperately want it not to be true, but you can see the limb, feel the pain and know that there is a period of readjustment afterwards which although difficult will take over from the despair of before.  The progress of dealing with the loss can be seen and improved with a positive attitude.  When the problem is in your brain, you may not be aware of the rate the cognitive decline is happening, your thoughts will simply change without it seeming odd or wrong.  I am scared that with cognitive decline I shall not be aware that dementia is increasing, because then I can no longer fight it.

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Daisy happy without cares.

Writing process malfunction

Reading my last post I see the breakdown in the flow in my writing.  Am I having difficulty comprehending sentences, or am I having difficulty in writing fluently?  I have had to do some editing to make sense of it.

I hear the sentences in my head as I write, and as I speak them it makes sense, so I would deduce it would make sense when I read the written word back.  Not so, when I look at what I have written a couple of days later, I can’t make sense of the sentences.  In fact what I have read does not match what I thought I had written because there are several words missing!  So, I am saying the words in my head but not typing them.  I am a touch typist; I have no need to look at the keyboard for the words in my head to be transformed onto the screen automatically without any thought about typing.  There may be a malfunction of the way my brain transmits the signal of words to my fingers.

Alzheimer’s, shame, guilt, acceptance

I read a blog by a very eloquent writer David Hilfiker, who has Alzheimer’s.  How I wish I could write with such interest as he does.   He has recently discussed the ‘embarrassment’ of having the disease.  He says he feels no embarrassment and has always been open about his diagnosis to everyone.  Others have talked about the embarrassment and I explored my own feelings.

Question: How do I feel about having been diagnosed with Early Onset Alzheimer’s?

Answer:  I do feel embarrassed even though I have nothing to be embarrassed about.  Having grown up being told I was stupid.  I think I struggled with whether that was true, seeing as I struggled to learn new things, but felt more intelligent.  I could have an intelligent conversation about a subject at the time of learning or discussing it, but failed to learn how to make sure I did not forget the subject at hand.  It appears that I have always had a cognitive attention deficit problem.  Too much information means I have to choose what to remember, and this part is outside my control.

When I was at University I had the feeling that people would look at me and say ‘what is she doing here, she is not is not bright to be one of us’.  At the time I had no idea that there was a physiological problem with my memory, and just thought that learning was terribly hard.  It turned out I was intelligent enough to create some strategies to try and retain the vast amount of information I was trying to learn.  I realised that my memory serves me better when it is visual, so would write key words on paper, and stick them to the walls at home so they would be in my view constantly.  I would hold an image of a body in my head and place pieces of information in various places, for example ideas of Darwinism on top of my head, Wallace by my ear and so on.

At first I was too ashamed to tell anyone of my diagnosis.  I didn’t want people to laugh at me, or joke that I have always been weird, or question my intelligence because of it.

This then for me is what I fear when people know being seen as unintelligent.  Now I am not ashamed to tell anyone because I realise that I have not suddenly changed overnight.  Those who have known for me a long time can tell the changes to my memory and they are the people I think will suddenly treat me differently.  New friends I have made recently would not necessarily know any difference and appear to feel easier in asking me questions of how it affects me, and of their own fears with ageing memory.

How many people say to me ‘my memory is dreadful’ as if somehow that reduces the impact of my diagnosis.  Why does this irritate me?  It is about someone not listening; of turning the conversation back to them, their lack of personal power…..whatever the reason I find it irritating.

Are they frightened that maybe they can identify with my memory difficulties, and then maybe they have Alzheimer’s?  It may be a case of; if we deny it, it can’t touch us.

It is like cancer, the word itself appears difficult to say when talking to someone with cancer.  Sometimes, people get comfort in talking about it, before it becomes the elephant in the room.    I have a friend who is fighting cancer and although afraid herself, will use the word ‘cancer’ to her friends to may feel too scared to use it.  By refusing to use the words, ask the questions, and talk directly about it, ‘it’ is being the monster that grows and grows.

Use the words, ask the questions, stop the stigma, stop the embarrassment, and reduce the fear.

fish memory

“Did you know I have Alzheimer’s?  Its okay, there is nothing I can do.  I am not away with the fairies yet, so you can still talk to me normally.   I may not remember the conversation  tomorrow though. Not to worry we can have the same conversation next week if we enjoyed this one. Ha ha ha !!!!”