Review of my Alzheimer’s of 2014

Looking back on last year I think I have become more settled with myself. I am very proactive in looking for solutions for difficulties I have and not worrying too much if I don’t find a solution. Here are some things I think might help for people with dementia.

• I use a calendar to record everything, (as much as I remember) even writing on the notes section when on the phone and recording information I know I will forget after the phone call.
• A blackboard in the kitchen is vital when I run out of something as I write it down immediately, and photograph the board when I go shopping.

There are lots of ways to help yourself when you have dementia, and also to help others who are living with the disease. I found a great idea recently when I was reading a crime thriller. Yes, really! The main character had brain trauma which affected her short term memory, so she started to develop strategies to help build a memory database by using her mobile phone to photograph everyday things and writing a description. For instance:

new doctor: photo+name.
New appointment: take a picture of the building and label it so you can see where you have been.

How many times have we been to an appointment or an event somewhere and not been able to remember the building, or even match the building with a person who I am seeing. I get confused with who is where, and who is what service! Yes it’s an easy mistake to make but when you keep making them it gets kind of stressy. Taking a photo of the building and the person could make things easier – obviously you’d have to ask their permission to do a mug shot.

What other challenges have I met last year? Well, it has been a tough time for both my husband and I coming to terms with my diagnosis. However, he has been trying very hard to understand when I repeat something, or to explain when I can’t understand a simple sentence without getting irritated. It takes the patience of a saint when someone with dementia is constantly asking what you mean because they can’t process what you have said.

I am trying to do as much as I can to keep myself mentally healthy. Okay I know the day will come when I am unable to keep my own control on everything but hopefully I can have a good number of years before that happens.

Getting things sorted is getting harder. As you might know from my book review blog I receive books from publishers, read them and write reviews, easy right? Say what I like about a book – no sweat.  Wrong: even though I know why I liked a book putting it down in words gets harder and harder. Firstly I have to motivate myself to start writing, next comes my thoughts, but that’s where I have to really push myself. I love writing, I love words, and I love books, so why does my brain become tongue-tied when I attempt to write it for the publisher?   This really is hard work for me but I will not give in, my encouragement is the odd email from a Publisher or an Author thanking me for my honest detailed review.

Travel – I no longer have my driving licence, and I miss it like anything. Could have I carried on driving? Possibly, but really my attention is not always great now so I would rather be safe on the road than sorry that I caused an accident. I am now becoming a train and bus traveller – alone I might add! You bet I am terrified before I travel, and stressed whilst I am travelling, but so proud that can still do it.
I have downloaded a LIST app to my phone and put in every detail of my travel details, departures, arrivals, times, places, other information etc etc.
So far it has worked. Travelling to London and then across via the underground can stress out even the most season traveller, but I have learnt to be single minded follow my instructions. If, like my last journey, all the trains ceased to run out of any of the stations I was travelling from, I managed to negotiate with any official looking person in a Network Rail/British Rail uniform on which train I should be. Oh yes – bring it on (actually it was really stressful but I did it). A simple journey is no longer simple – see my last post.

Next
Socialising – I find myself wanting to be in large groups of people less and less. I might of want to be with groups of friends before, but now it somehow fills me with apprehension. What has changed? Too many people means I can’t always process what people are saying, combined with the fact that I don’t always get jokes. When everyone is laughing because someone has said something funny and I have no idea why, it can leave me feeling outside of the ‘group’.
Hearing – I am finding it hard to process what people are saying, even though what they are saying might not be complicated. Also, if more than one person is speaking I have absolutely nil chance of hearing one voice! One person speak at a time please. I am no longer willing to meet people in pubs anymore because there is too much noise for me to hear only one voice. It is like being deaf in a sea of noise.
Vision – Definitely need several different glasses but doesn’t everybody as they age. Some days when I read the lines on the pages are wavy, or they get smaller on one side which is to do with my Alzheimer’s. Or sometimes I cannot understand the sentences on the page and have to stop reading.  My perspective is worse I believe. I can look up a road and not be able to work out the perspective of the street, houses and pavements are. Another reason I don’t drive now.
Memory – Apparently goldfishes have more than a 7 second memory, unlike myself at times! I think my memory remains in the same state thankfully, somethings I am ok with, some things I have no memory of. I recently received a copy of a letter from my consultant Neurologist, with information that I agreed to phone her after six weeks of our appointment to discuss my medication. I have no memory of that conversation so obviously I haven’t yet phoned!
Communication: I met an online community of people living with Dementia who have inspired me to try and get involved in bringing awareness to the realities of living with this disease. That is my most significant undertaking ever. So roll on 2015 when it starts.

The thing I have learnt the most is that I STILL CAN attempt to do anything I feel able to do, but I don’t beat myself up when I fail.

Travelling with Azheimer’s

So, I travelled to London to stay with my daughter for Christmas.  A one hour journey with one change which went well I got to Euston fine.  No sweat.  Next – two tube journeys to meet my daughter.

No problem eh?  First tube was ok, I started to feel a bit anxious but the instructions were clear, get the Victoria line Northbound.  Just follow the signs.. and yes I got on the right underground train.  I alighted at Highbury and Islington and had to get on the overground to New Cross Gate.  I couldn’t see the map on the top of the wall to see where we were, and started to worry that I was on the wrong train.  What if I was on a train going in the opposite direction?  My anxiety levels started to increase.  I was no longer sure about what train I was on.  This should be so easy, I have the directions on my phone as a list.  But can I be sure the list and the train I am on is the same?  The feeling of anxiety is heightened even though I am trying hard to convince myself to calm down; I am on the correct train.

Once upon a time I would take all this in my stride, no stress, on the wrong train – no problem just get on another tube in the right direction.  Sadly now that is a harder option because I am no longer confident in trying to sort out where I need to be.

I am well aware that I am at a very High End Functioning end of Alzheimers/Dementia  – thank goodness.  Keep going like this for as long as I can.

Anyway, I got there fine and we had a very nice time, nothing special, nothing racy, just quiet and normal.  We cooked a wonderful dinner together, we watched Disney films:  Frozen, Brave etc.. lovely!

And then……we just remained cosy and normal for Christmas days.  Eating, drinking (not too much) watching TV, chilling, sleeping..etc, just the relaxing time you would want for the holiday period.

Journey back:  just hell

No trains back from Euston.  Various routes:  but mainly from Marylebone – via Banbury/etc etc..  I had negotiate my ticket on the train because I was not on the Midland Mainline.  I had a change at Birmingham Moor Street with a walk to Birmingham New Street.  Sorry but I could not contemplate trying to find my way to New Street Station so i called Mr Hsg and he picked me up from Moor Street Station.

Phew, anxiety breakdown averted.  I feel so good that I did it.

I used to be able to go anywhere without much trouble, if there were challenges to work out the route – no problem.  Just find the destination and work it out.  These days I plan, I write out the plan, I get anxious that the plan is not working.  But, right now I can make it.

When you think of someone making a simple journey difficult, think hard.

A simple bus journey that you and they have always done, suddenly becomes the most complicated journey ever.  Don’t expect a person with Dementia to be able to negotiate a simple journey like they used to.  Written instructions may have no meaning, memories of the journey may be lost.  Do not assume that because they did the journey before, they can do it again.

Fortunately, I am still at a stage where I can phone people who I know can help me when I get confused.  But the time will come when I am no longer able to make that simple train journey on my own,

Before you assume your loved one can travel the same as they have always travelled, ask them if they still feel able to do so in the same way.  Do they feel confident? Has anyone written out their route for them?   Is there anyone who can meet them?

When I can no longer travel alone, who will be willing to accompany me to where I want to go?

These are the things that need to be thought of in Early Onset Alzheimer’s Disease.

Just thinking……………………..

 

 

 

My Dementia Dreaming

Adventures with friends!

My dreams are becoming more complex.  They are not scary, but they are so involved it is like watching a film.  It is not like seeing snatches of scenes but whole segments of an ongoing story.  It appears that I am weaving people, bits of television programs, reality and events into fantasy all involving myself into a nighttime world that I step into.  I have caught trains, been in airport terminals, I have been pregnant, built houses, had adventures, travelled with friends and companions I have never known before, with my friends who bear no resemblance to their real selves, and all in 3D and colour!

The dreams are relentless each night, and sometimes leaves me mentally exhausted in the morning, without the ability to retain the memory of the details of them.   I simply wake with my daily head pain, my brain stuffed full of mental activity, which by the time I have made a drink and takeDreams or realityn my tablets and ease into the day, dissipates.  But I know one day they won’t.

There is no real point in trying to work them out because they are garbled meanderings that have no meaning.

from_machination_of_dementia_series_by_lukaszwodynski-d5lssdw.jpg-142250I know that they may get worse, and hope that they do not develop into nightmares, common with some types of Dementia.

 

The problem with dreams is that as the disease progresses they become mixed up with reality.  I have had odd flashes of thinking of something and wondering whether it was real or did I dream it?  Did I talk about that to someone?  Did they tell me?    I don’t want the day to come when I am awake and the dreams are still real.   I mean that the people in my dreams are there in my waking, or the events in my dreams are part of the reality during the day.   When the day comes when someone starts arguing with me that what I have just told them is not real it will be sad.

Reality of Alzheimer's

So just don’t argue with me, I want to say now, my reality is not the same as yours okay!

Do not smile with pity in your eyes

Do not smile at me with pity in your eyes
because then I see an empty heart
Do not write with sadness in your tone
I can still feel every word you write
Or speak in a way that simplifies your voice
in case somehow I have lost my intelligence

When you think of me look at who I am
not who I was when we bounced against each other
Remember the times we had being creative
laughing and talking till all hours
Tthrowing our dreams in the air hoping
to catch them when they floated close enough

Listen when I speak to you because I am still here
I can still feel the same when you discuss a thought
I can still laugh and throw ideas your way
You may see a few cracks but don’t dwell on them
enjoy what I still have and am inside
Understand what I have to say is important
worth a serious listen and response
as you would anyone else in conversation

Think of me with the love of the friendship
we have embraced before, secrets we shared
happy days, the troubled times we put to rest
Now bring that to our communication
A knowing smile, words special to just us
Remember my personality and understand me
Its still lurking in me waiting to peek out
and surprise you.

How do you reach someone who appears a shell?

Speak to me with music that I listened to
being collected on my iPod ready for use,
Speak to me with photographs that I have taken
perhaps seemingly random but
those decaying buildings held sway for me once.
Read to me: poetry, a crime novel, no romance please
George Elliot; my favourite classical author

Know me, that I am not a stereotype
When touch is important, know that I HATE it
Unless I have a manicure or pedicure
Know me in dyspraxia and dementia

Brush my hair I love that feeling
Give me my 18” of personal space
know me that I needed that once

Know me that I love all things alternative
and that my sense of humour may be dark

It matters not
that you may not see these things in me
But know that is what shaped
my personality to the person I became
And to each of you, dear friends
I showed you a side that remained yours alone

So
Do not smile with pity in your eyes
Let me see instead, love, understanding
or a wonderful wickedness of a life enjoyed

Brain to mouth, Receiving, Over?……..(Silence)

jigsaw brain

Yesterday when I got up I started reading a book, so I read from just before 8am and finished it around 9.30pm. I simply could not put it down it was so exciting. This morning lying in bed I was thinking about writing my review of it, but cannot for the life of me remember the name of the book or what it is about. I have absolutely no memory of it, nothing, other than reading a book so good I had to finish it in one go!

I am reluctant to look it up on my kindle to see what I have read as I wish to search for triggers enabling me to bring all the information to mind and there is a part of me that doesn’t wish to hurry this process. Take it slowly, do it right, no frantic word search in my mind to find the key, no frustrating inward shouting at myself ‘what is it about’. 

I will make another cup of coffee and see if I can work through this methodically to prove that I can remember it with the correct triggers I can give myself.

Right here goes: it was a thriller, but not horror …………. there’s the trigger and I have it – Before I Go To Sleep. Eureka! that was easy.  My first memory was a hotel room….can I remember the names; Ben, Claire, Dr ?, Adam, but what was her name..Christine! Eureka again!  Do I remember the details of the book?  Some, not all, if I try to give you an outline I would get confused, I would not be able to get the sequence right but it does not matter because I know how it made me feel when I was reading it. I was excited, on the edge of my chair, I couldn’t put the book down and felt guilty about all the things I should be doing as I was reading, but still I could not put the book down.   

catbookSo how do I review books when my memory about the storyline itself is so poor? I go on the fact that I know what I like, how a books makes me feel when I am reading it and what emotions am I get from the way the words make up the story.  Does a book make me think, do I break down the plot in my mind, can I see what the author is trying to show me. Did the book give me the escape that I enjoy?

What the author is looking for in a review is whether the reader loves the book on as many levels as possible. No book will be loved by ALL because we have different tastes and enjoy different styles of writing. I struggled with the first Harry Potter book and could not read the rest because I dislike the way J K Rowling writes, however millions of people love reading the series. I do however love the films and believe her imagination is wonderful.

When I look at my Goodreads read-books-list there are titles I have no knowledge of reading or what the books are about which means I could read them again as if they are fresh to me, but reading a style of writing that is comfortable is not challenging my cognitive processes. Finding grammatical errors in a book with writing that lacks the finesse of established skilled authors exercises my cognitive skills, because I am determined to focus on understanding the story. This is not always easy when there are days when I struggle with the construction of sentences and have to read the same paragraph repeatedly to make sense of it.  It is often easier for me to leave the book and do some writing.

In my thoughts words flow so easily, I don’t struggle to express myself and can say exactly what I want to say. The difficulty begins the moment I come to speak aloud, then the ability to retain this flow is completely lost; the connection between my brain and mouth is faulty.   I can however write better than I can talk and I believe this is because I am a touch typist. I think – and the words appear in front of me like magic, but if I stop to construct a thought to write it down it disappears. Sadly though this ability does not encompass my memory.  I do have to read over what I have written and rewrite quite a bit though because my fingers are sometimes wayward and write their own things down!  The process of writing takes more time and effort than it used to.

But today I am rewarded finally with some memory of the book I am about to review, so with the addition of flicking through the pages to remind me of the story and using the notes I have made whilst reading, I shall write my review.

Slide28

I am the north face..I am dementia

I recently found and read a blog that sent me back 20 years to my days at University studying History of Science.  As part of my course philosophy opened my mind set me free.  This blog made me ache for the memories that have become fragmented in my memory.

I received an award to attend the Annual Conference the Philosophy of Karl Popper, 1995, in London which I believe Dr. Ray Scott Percival was the main speaker, sadly I am unable to remember correctly. I do know that ‘he’ was a student working with Popper.  What I also remember was being enthralled with the discussions on the day.  This was not a massive conference, this was for a relatively small audience who were truly interested in philosophies and I absorbed every word to pore over later.  Anyway, this blog stimulates this side of me that is excited by ideas and discussions.

I made some comments and this person wrote me a poem, I cried, as it touched me that someone could put into writing an understanding.  Please read it, the words are beautiful http://darkecologies.com/2014/09/07/lost-time-memory I mentioned that maybe I could put into words some feelings that may be so honest that they are hard to read.  So having been inspired by Mr Hickman I offer the following words.  I hope it can be understood at least:

I am the north face… I am dementia

I am the north face
I am the roots that creep unknown
and define the crack at first overlooked
I am the Tricon of Portsmouth
the Torre Velasca in Milan
I am subsidence from an underground
trickle of death, the dissolution
I am the searing heat of a day
spreading its miasma.
I am the first animal experiment obscuring the truth.

As I dissolve into less
I will become more,

I am the frightening creature of my own imagination
when darkness comes night after night (*see picture below)
I am the accusation spat without reason
I am the darkness without hope
I am the terror of confusion
a constant shifting of time and place
I am the strangers that fill me with their words
that I cannot remember
I am the hand that feeds an occasional moment
of lucidity right up till the end
I am the thief that sews your mouth shut
And hides the terror of knowing behind dead eyes
I am all you shall be

You were a facade that once grew
in architectonic curiosity
Principle of sufficient reason
You were Gothic magnificence
switching patterns of modernism
You were a beam of golden light
a metaphysical ray
That has dissolved into it fragments
and frustration

To become an empty box
Only on rare occasions does your soul appear
During A weekly ‘MaiNene’ ritual for relatives

When I can no longer write
and no longer ‘be’
I wish only to sleep forever

10698603_1461574987441580_3984967277072312758_n

This is the artwork of Lauren, a fellow dementia friend who generously allowed me use this collage.  Lauren has Lewy Bodys Dementia which can give horrendous  hallucinations.  We can all be amazed at her beautiful artwork and forget that these creatures haunt her nights.  To find out about Lewy Body’s dementia and see Lauren’s artwork please read the blog that another fellow dementia friend has written here .

 

Alzhiemer’s and the lack of memory to order prescription medication!

There I am carrying on as normal. la la la la la ……and then get up on Monday morning and find I have 3 tablets left of my Alzheimer’s medication!

On Monday’s I usually get all my medication drugs out with my weekly drugs box and methodically fill the day boxes, morning and evening with the medication that I take along with my  vitamins C, D, and E.

I find it easier to to sort out my medication on a Monday morning because it feels like the beginning of my week.  No longer working, each day is the same so often I have no idea what the day is.  Is that a problem or a symptom of my Alzheimer’s, no idea but I reckon it is the same for many who have retired.  When you don’t work the weekend is much the same as the weekdays and it soon merges into weekdays other.

So come Monday morning I know that my weekly routine is to get all the drugs and vitamins I take and on a tray and fill my daily boxes, but found to my horror that I had forgotten to order a prescription and had only 3 tablets left.

Yeah yeah yeah I hear you say what’s the big deal.  This is the medication I take for my Alzheimer’s and although it will not ‘cure’ it, it prolongs its affect on me (hopefully).   It says you should not miss a dose…actually why would I want to miss a dose?   No, I want to keep taking it so as I can prolong my demise as long as possible.

Forgetting to take my medication is a factor of this disease!  Forgetting daily routines is a symptom of this disease.

I asked for an urgent prescription, and collected it this afternoon.   I asked about having blister packs being made up for my two prescription medication to make it easier for me to remember, but somehow the pharmacist failed to understand.  “Yes but if you put it in daily boxes, it is easy to remember to take it?

I don’t know; she is being rational but it is hard for me to say:  ‘look, sometimes I find it hard to remember to take them, maybe if they are in a blister pack, which is bigger than my small weekly drugs boxes would help me remember’.

‘There are apps you can download on your phone’, the pharmacist said ‘to remind you’  My immediate thought was a phone noise irritating the hell out of me, but not necessarily making me get up and immediately take my medication.

I might pursue blister packs because it means I will not run out of my medication because I only have to remember to order them once.

Goodness, it should never be hard to remember to take/order medication but reality is that it is for someone like me.