Tuesday, 25 June 2013

Dementia is a cruel illness,

I have just read an article about the mind or brain playing tricks with us when we have dementia, and there are times when I confess that I really hate the illness.



I have problems with horrific and very vivid dreams and nightmares at nights, and sometimes end up getting out of bed, and then I sit in either a room downstairs, or in the bathroom till I think its safe to go back to bed. The problem then starts, what is still the dream and what is reality as I can not always work it out, as one seems to merge into the other.



I have seen things which I know are not there are times  after these bad dreams and nightmares, and it gets to the stage at times when  I just want it all to end, as these horrors of the night as they seem to go on for ever and there is no getting away from them.



I know that we all have nightmares and bad dreams, but these things have now taken on a roll of their own. Most people have a bad dream and then its gone, where these ones I have are so vivid that I can sit down and explain them out in detail the following day. Yet the bare no resemblance to reality.



There are other times when I feel as if I am being got at by my wife and others, then later on, after either having it all explained in detail, or after I have sat down and thought  it through,  I realised that my brain had not taken on board what was being said in the first place. Its horrible when you think everyone is getting at you, and it ends up being your brain which has not worked it out properly.



I sometimes read e-mails etc, and get the wrong answer? so after reading them 3-4 times and getting a different answer each time, I ask my wife to read it and explain it to me .This is distressing when I think I used to write reports, budgets and estimates at work, yet my brain is now a moth eaten wreck.



Writing things can also be a headache these days as I tend to miss words out, and its down to the fact that my brain is trying to work faster than my hands these days. Its only when I go back to check what I have written and then I realise words are totally missing



I sometimes repeat telephone numbers, or prices in shops, and its amazing how many times I get the numbers all mixed up and in the wrong order.



When I go to meetings I have to think carefully about what has been said, otherwise I come out with the wrong answer, simply because I did not understand what was being explained?

Sometimes I panic when being asked a question and the wrong words come out.



Modern buildings can be a complete nightmare to many with this illness and signage does not help, as its either too modern or there is simply too much of it to take it all on board

 One of my main concerns is reading a toilet sign when I am on my own and this can be distressing on the days when I am not feeling very good.


The only way I can get my head round this is to tell myself that a man has two legs, where the ladies toilet sign has  a person with what looks like one leg and a skirt.


Saying that I would be in serious trouble if I was Scottish because as we know they themselves wear kilts


Having said that we went to a building a few weeks ago and found that both ladies and gents toilets had very modern signs, both of which had pictures both of which had one leg, one appeared to have a dress, the other I was not sure, but we guessed it may be the gents. 


As well as that many hotel call their rooms by different names, so you have to start trying to understand what the name means there before going any further.


I often think that hotels could be more dementia friendly if each floor was a different colour so even if you forgot the number, you could find the right floor by looking at the colour, but perhaps that will never happen.


When I was working as an engineer I understood that all signs were to be standardised, but this did not happen, and it’s seems that many modern hotels do things to suit themselves.  I have been in some which have two toilet signs on each door which is even more confusing.


As far as road signs are concerned my problem is that each time I look at a sign I read something totally different, but I think that's the illness playing its usual tricks.  But it can cause confusion when my wife is driving and I try to read a sign.


One thing I really hate is going into a hotel and finding it has a full length mirror on the wall, especially if the room stays fairly light at night, as you sometimes get up and see the reflexion of a door in the mirror and sometimes make the mistake of trying to walk into it.

Others have very large mirrors in the bathroom so you see two of everything, and in one particular hotel it had a large vanity mirror on the wall behind the taps, and it was the following morning that I realised that I could see myself sat on the toilet which gave me quite a stir as I had not realised that it was there till I was sat minding my own business.


This is one of the major problems many like myself have, as we don’t always see the obvious, until it’s too late.


Many people struggle with modern buildings, and I find them to be a nightmare at times especially if they have marble floors, as I sometimes see things which are not there.

It’s all due to the design, but some people think that we have a form of 3d vision, which allows the brain to think items are lurking in the design such as large worms, snakes or that we think there is a crevasse in the floor when there is a different streak running across it.

Along with that escalators and revolving doors are things that are a no go around because it becomes a nightmare trying to judge the right time to move through them

When I am doing a project at home I try to work it all out first, as I know that I am not as fast as I used to be as an Engineer. Yet its amazing just how wrong things can go.
 

I am not frightened of dying, simply because I know one day it will come. But I confess to being terrified of this illness when it starts to get worse.



Is this illness real or just another very long and nasty nightmare which I will hopefully wake up from.

Does this brain of mine have its own sense of humour, or doing what it wants irrespective of my,
I don't know but I laugh it off sometimes and others I just want to cry

Information pack for diagnosis of dementia

The other day I found this old 2006 blog about the information pack we were given, after my diagnosis of Lewy Body Dementia in County Durham...