Diagnosis in writing…

Elephant

Received a copy of my diagnosis from Professor L.  I find I always need to know the exact details, everything there is to know.  I think that Prof L does not see the benefit of discussing my diagnosis with me.  Maybe he thinks it would not help me/I wouldn’t understand/I will forget anyway.  I always need to know details, no matter what it is.   Maybe that is part of my Alzheimer’s the obsessiveness of needing details.  On the other hand I have always felt that as the patient, I am the person who should be talked to first.  I should be told, I should be talked to as if I will remember, because actually I think I will.

I studied psychology and I do understand the workings of memory, I enjoyed the neuroscience part of my degree more than the ’emotional’ side at University.   The letter explains that I have deficits in the medial temporal lobe, more so on the right side. There is no dementia (yet).  Sooo… how does this make me feel…numb really.

I read this article on  an American Alzheimer’s site that gave the 7 stages that I will go through.  It was honest, and I welcomed it.  UK site’s seem to want to hide all these nasty things from us but I want to know.  I am at the pre, pre stage, I have difficulties with my memory, I am finding that my sense of humour is somewhat lacking these days, I find it difficult sometimes to understand what is going on when I am watching a program on tv.  As a touch typist who has typed for years, I am now finding that I am ‘automatically’ typing as if I was dyslexic, in other words, transposing letters within a word.  Or I am typing a word that is different to what I am typing which I am having to correct constantly.  e.g.  Or I am typing a work that it different to what \i am typeing whcih I am having to correct contsantly. (typed without corrections).  Ok so this may not be that much of a problem, but I know it and it shows what is happening to me, which I would rather not see.

So what have we done these past two days……yesterday Mr Hs slept all day..his man flu is at the coughing stage which is wearing him out.  Me, I made blueberry muffins, cooked dinner, read and did not a lot else.   Today, Mr Hs went out bought 3 bags of coal, and pressure hosed the pontoon along the side of the boat.  The green algae that grows in the wet weather makes the pontoons very slippery and lethal!  Then he filled the water tank whilst I did three loads of washing, and drying, cooked dinner, cleaned the carpets, and cleaned the bathroom.  Thus the day was filled with normal boating life chores.  Yes, it is a lovely peaceful way of life, but you have to constantly monitor your water consumption, monitor whether the toilet cassette needs emptying, take your rubbish by car to the skip, empty the Tipee Ash Can in the ditch or fill in a hole in the road around the marina.  I still love it though.

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Mobile wifi signal malfunction no blooming tinternet!

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I hate forms!

I have always hated filling in forms, I get ‘bored’ after the first page.  I fail to read the instructions, and then cannot remember them when I do.  I get tied up in the semantics so that I don’t understand what exactly it is asking me to do.

I have to fill in a form to make an appeal, it was bad enough filling in the first 61 page monster.  That took me 4 weeks, this one has to be done today.  Why is everything so difficult?

Gave up and phoned instead…that was just as bad, I hate explaining myself, I get tied up with what’s in my head and what’s (not) coming out of my mouth!  I have a sheet of paper in front of me to read from that I wrote earlier, so why can’t I scan down and read it.  I forget things I should say, and say things that are not remotely helpful.

I tried to blog this yesterday but the blooming tinternet wifi dongle had no signal.  So much for a daily blog

I lay in bed this morning thinking about forums and talking to ‘she who prods me in the face with a paw and meows loudly 1cm away from my face’.   I must explain, I am unable to get out of bed first because I am furthest in under the gunwale, and Mr Hs has to get out of bed so that I can get up.   I am awake early, he likes to lie in.  Piewacket black cat chivvies me along every day to get up as early as possible and fill her’s and Dozy’s bowls.

Forums – forums to support those with Alzheimers/Dementia and their carers..I know, I know..it seems crazy to think that sufferers should have the where-with-all to join in sensibly…well, let me tell you I and some others still have some live brain cells left and will continue to use them for as long as possible.  Anyway, I digress.  Support I thought, that would be helpful, and yes they are lovely lovely people, but reading the threads are TERRIFYING for a sufferer as it is full of carers sharing their stories and sadness of their loved ones whose brain cells have died.   Bloody hell, I thought, here I am wishing to get the absolute most out of being compos mentis, only to read how I am going to make my loved ones suffer when I am not.   It feels like the things that I want to talk about, cannot be spoken about and needs to be hidden from the carers….It is too raw, and too honest to be openly spoken about.

Living Will – I was unable to find any threads about those who wish to have a living will.   I want one, hell’s bells in no way do I want my family to remember me with such sadness, and trauma of having to care for me.     I have talked it over to Mr Hs and when the time is right, when I am no longer me, should I become ill, pneumonia or such like, no way do I want any treatment.  No resuscitation, no treatment end of..

And now to go get food, because the fridge is empty and Mr Hs will need feeding today.

Happy New Year

ImageWoke my usual time around 8.30am and the sun was shining over the marina, well almost!  I feel reasonably excited for this year because not working, we will untie the boat and cruise for a couple of months.  

I was not raining today, a good start to the year, so we went for a walk along the Trent & Mersey canal in the village of Alrewas, in Staffordshire.  It was beautiful, the sun broke through the dark clouds with shards of light.  It stilled my thoughts, and made me feel calm and relaxed.  

Mr Hsg still has a cold, his eyes running in the chill air on our walk, but the freshness blew away the days of being indoors.

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New Year’s Eve

Mr Hsg is still full of cold and is clearly not up doing much.  Sitting reading, I suddenly realised it was New Year’s Eve, and that it is Monday!

I have so much to do…write to DVLA and inform them of my diagnosis, Professor L says that he will tell them that I am ok to drive still.  These are things that you don’t think of initially that could be affected.   Then, I have to phone the Occupational Health Assessor and let her know my diagnosis and explain that Prof L says he will sign me off to retire early.  It is all so alien, these procedures, what to do next, who to tell.  I have yet to tell my work colleagues, somehow I am finding this difficult.   I keep thinking about work and the emails, and conversations I had with my seniors/bosses about my memory problems and my fears of forgetting important things, and them totally ignoring me!   Let’s just say they have little skill in the ‘human’ resources and disabilities at work and the law.  Having been off work since early September, work is beginning to fade away for me now.  I miss some of my work colleagues, they are lovely people, I miss working with the young people, but others can do my job equally as well.  No one is indispensable in life. I believe all we can ever hope for in our life’s journey is to bring something good to others on the way.   As Maya Angelou said:

” I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you feel

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I love how these are put together!   Touching tributes to our closest loved ones, on the Pier at Clevedon, near Bristol.

Sunday 30th December 4 degrees and its raining…again

Yesterday was a day of chores. Mr Hsg is full of cold, he has ‘man flu’.  The rain was torrential and it was windy.  The Marina staff turns the water off in November, to stop the sudden freeze and damage to the water pipes on the pontoons.  One tap at the far end of the pontoon is left on because it is heated to keep from freezing.  So, Mr Hsg got dressed in his warmest wet weather gear and went outside to connect our hoses together to fill the tank.

The toilet cassettes also needed emptying, something that definitely cannot be left. I offered to do all of this but he insisted that he would do it.  When the water needs filling we do everything that uses water whilst filling it so that we end up with a full tank.  I put the washing on and had a shower and did the washing up.

The wooden pontoons become very slippery in winter, and my balance is not good, so I am really careful not to slip.  Back when I was at the University of Leicester studying Psychology, I attended the British Association for the Advancement of Science conference in Newcastle. I think it was in 1995, anyway, I went to a lecture being given by psychologist Pat Rabbit on Dementia/Alzheimer’s, and he said that it was shown that people who had difficulty in closing their eyes and stand on one leg was an early indication of possible Alzheimer’s. It has been something that has stuck with me, mainly because even then I was unable to do that without falling!   I used to laugh about it because I have never been able to do it. I thought it was because I was dyspraxic and had poor balance.  Now, who knows!!

When all the chores were done, the washing drying in the dryer, the beef stew I made the day before was heating, I made parsley dumplings and popped them in.  Being gluten intolerant, I can’t use suet because they add flour, and gluten free flour does not always perform well.  Mr Hsg had a hot shower, sat by the fire (we have a multi fuel stove in the corner at the bow) and I served him up hot stew with dumplings which turned out quite yummy.

My brother, who is 11 years younger than me (I am 59) phoned, we are close and I know he is having difficulty with my diagnosis.   “When will you have more tests and get a prognosis” he asked. “I have had all the tests and the prognosis is unknown, 5 to 15 years if I am lucky before I am no longer me” I answered him.  He then reminded me he sees his consultant on the 2nd Jan, because they say his frontal lobe has shrunk. He has had episodes similar to epilepsy.  He said he had spoken to our Dad who is very worried about my brother now because of my diagnosis.  Me too, hopefully it will not be of lasting seriousness.

We will have to wait and see….

Spoke to my Dad

Today I spoke to my Dad.  I couldn’t bring myself to talk to him over Christmas, I didn’t want to talk about anything to do with losing my mind.

Today I told him I Alzheimer’s, he was shocked, and started talking about the sadness of caring for my mother who has vascular dementia, brought on by mini strokes.  I wanted to say – stop it I don’t want to hear how awful it is to care for someone with dementia. He said “she lays the table with the wrong knives and forks and that is sad, it is the little things that upset me”.

 It makes me feel so guilty that Mr Hsg will have to deal with things like this.  I don’t want him to be tired because it is hard work, I don’t want him to wish he had never married me.  The guilt I feel is heavy.

It is easy to say, that he married me because he loves me, he didn’t sign up to be a carer of someone who will lose their mind.

I keep waiting for someone to say, sorry we got it wrong…maybe I dreamt it and will wake up and it will be different.

I think I need this short, private, silent, time to rage and despair inside, whilst I quietly accept it on the outside.   Soon it will no longer be new news to me, and will be “as it is”.

So..moving on to that time…

 

Christmas on the boat 2012

Christmas Day – 25th December 2012

Didn’t get dressed on Christmas Day.  It was lovely having my daughter C with us..even if she just spent most of her time on her phone/twitter or kindle reading!!

I spent most of the day cooking and washing up, just a normal Christmas really.   I feel a need to try and enjoy every moment but in a quiet way.   I love being away from everyone and the hustle  and bustle of towns and cars.  I love the quietness of being on a boat, listening to the rain on the metal roof, feeling the boat bob up and down when the wind is strong.  Hearing the birds, the ducks arguing.  The canada geese with their damaged ‘angel wings’, forever stuck in marina, starting to exert their dominance.

I really wasn’t interested in presents, for me it was having my daughter with me.  The run up to Christmas was fairly traumatic with hospital appointments and the fear of the diagnosis to come.  I did not trawl round the shops for little gifts, finding those special little gifts that Mum’s find for their children.  I fear C was a little disappointed, but got what she asked for and even though knitting needles and a bag is not the most exciting it is a lasting present..and of course I will pay for some wool to start her off.

26th December 2012

 – Boxing day

We got dressed….and headed off into the rain to Bakewell in the Derbyshire Peaks.   C’s feet froze and we walked round looking for some thermal socks for her.  There were a lot of people despite the weather.  We sat in a coffee shop and I took pictures of C..I had told her I wanted to start a ‘Memory Book’ before I could no longer remember who anyone was.  I know it was a hard thing to say because it brings home the reality of what is wrong with me for her.   I lie in bed at night and it breaks my heart that time is limited for me being ‘with’ the ones I love.

Am I noticing my memory and other difficulties more because I know it will get worse?  My hearing is not quite right now.  I am unable to process more than one sound at a time.  Don’t bother speaking to me when I am listening to the radio, tv, or music because I can’t get what you are saying.

27th December 2012

We had to get up before the crack of dawn to take C to Birmingham Coach Station because she did not book her return ticket early enough for anywhere closer!!

I miss her when I am not near her.  Living in the city her life is fast paced, friends, a good social life, and life full of interest.  It feels sometimes we are worlds apart, but she has always liked the culture of London Life rather than the quiet country life I prefer.