Trying to write and think

 

The other day I did a presentation to some student nurses about dementia. I made a mistake and used the wrong word on one occasion, something that my wife pointed out later.

Although it was not meant to be rude or nasty, it could have been picked up the wrong way by some, and I was upset about it.

Although I always type out any speech or talk, in size 14 letters on the computer, I always find that during the speech, I don't always see all the words that are in front of me, this is something I find very odd.

But I have to write these things out well in advance, because I make so many mistakes, which I don’t see, until it’s too late.

These days I always get my wife to read everything and correct any mistakes she finds, although this can be made worse by the fact that I sometimes miss out words, and she has to guess what I was trying to say, so as you can imagine this is very hard on my wife as well as myself.

When I get an e-mail, I don't always understand what it means until I have read it a few times.

The problem is that each time I read something, I see something different and it gets distressing when I don't understand something or totally misread it, and it's only when my wife reads the same thing that I realise I have picked it up the wrong way.

There are times like this when I really hate this illness. It destroys your ability to control your life, and while assistive technology helps to write things on the computer, it does not help with speech or trying to get the correct words out.

When I look back to my days at school and at college, we were always taught how to speak clearly and use the correct words and grammar, and when I was at work as an engineer, I could write reports in half an hour to an hour without thinking. Now that has all changed.

Simple things like typing have become a nightmare. Although I have always been right-handed, I now find that my left hand is faster than my right hand! So I end up sitting on one hand to get the spelling right. Otherwise the letters of the word are all mixed up, and although the letters of the word are all there, they are all jumbled up, which looks more like a code than a letter or e-mail.

When this first happened it was very distressing and hard to cope with, but by using voice-activated software like the Dragon I have been able to get around some of the problems and life has become easier.

It is times like this when I realise how easy it is for people with dementia to be misunderstood by staff in hospitals and care homes, and then be treated with a lack of respect because the staff thought they were rude.

Many staff don't always realize that the person with dementia just made a simple mistake and used the wrong word or words, something which is taken for granted by those who have normal brains, and yet those with this illness are treated like idiots.

However we all make mistakes but under pressure or in the wrong environment we can make more of these without even thinking about it.

Spoken word
When we are talking to someone face to face we have problems trying to think of what has been said, and trying to answer without offending the other person.

This is not as easy as it looks because I confess that I don’t always understand what has been said, and sometimes give the wrong answer.

Although this is a simple task to many, it becomes very difficult and sometimes hazardous at times for those of us with dementia.

This of cause could be made worse by the fact that the other person was speaking fast, they had a strong accent, or there was loud music, or noise in the background, or other people speaking at the same time, so all the voices merge into one.

Many of these things cause upset, when you are struggling to concentrate on a conversation, and this can lead to frustration, and either walking away or getting agitated, which makes us look rude or aggressive.

Written word

Like many other people I have virtually lost the ability to use a pen to write at times, and signing my name is embarrassing, as it’s all over the place. This is something I find very distressing when I get halfway through my name and have to think what comes next.

I realised something was wrong years ago when this happened at work, as I would had to stop halfway through my surname and think, have I finished or are there other letters. It was also at work that I realised that while writing out order forms, I was changing from small case to capitals without knowing, and this lead to a lot of distress, as I could not work out what was going on.

Needless to say it also cost a lot of money in destroyed order forms which could not be used, so my employer was not at all happy.

A lot of problems are also made worse by the fact that many of us lose the ability to type and even write articles or letters, and sometimes make horrific spelling mistakes, even using the wrong word can make the article look as if you are being arrogant or rude, and that’s not intentional.

The wrong word can also change the meaning of what you are trying to get over, and although it may not be obvious to us, it will be to others.

But as I stated before finding the right word is not always easy when you are out of your comfort zone or trying hard to wright something but cannot get the wording to sound right

As in Spoken word topics, many like myself sometimes get so flustered that it can end up with aggression, something that we all hate, yet we cannot do anything about it.

I know that it’s just sheer frustration, but in our case it sometimes comes out as this aggression, and it’s usually when I feel that I cannot work something simple out, or the right words will not come out.
This has lead me to stop attending some meetings, as things go wrong if I am not comfortable, with the settings or sometimes the people in the room.

Although in many of the high profile dementia meetings most people respect the fact that I have dementia and make allowances.

Music which distorts our thoughts

Sometimes music can have dramatic effects on those with dementia, and it ends up causing agitation or aggression.

I was once listening to some classical music, something I really liked and then all hell broke out as this had obviously triggered something in my brain, so I never played it again.

My poor wife was in the room at the time and she got a shock, but at least she now knows about this.

Yet I have listened to some of Wagner’s music and it had no effect on me at all which surprised both myself and my wife, as that is very dark.

If I am out shopping and the shop has loud music playing, I often have to leave otherwise I get upset as I cannot think properly

I like classical music in the back ground, as it can sometimes help me to concentrate, but there have been occasions when it’s had the wrong effect, and I ended up being agitated.

I have found that some pieces of music which are quite relaxing at the best of times, can have the opposite effect when you least expect it to happen.

As a person who struggles with nasty nightmares at nights I often listen to classical music, but found it sometimes did horrible things to my way of thinking or trying to relax, so in the end many of these tracks were removed, from my collection.

Sadly I found that some music causes havoc when I am trying to write on the computer, so there are days when I don’t have anything playing at all.

I also struggle with my concentration on the best of days, and if someone speaks when I am doing my best to work something out, I find that everything falls apart, and I have to start thinking all over again.

Having said that, I know that my hearing is going, and often jump a mile if my wife or someone else walks up and touches my back, when I am concentrating, especially if I don’t have my hearing aids in.

Perhaps I need to start again with a new brain or reconditioned body

Through my blog (ken-kenc.blogspot.com) I can explain my life, my problems with dementia and my efforts to get around the problems. Although writing my blog can be painful at times, it helps me to understand that there are other people out there around the world who are in need of advice, or perhaps need to understand more about the illness, so perhaps by doing this blog, I am not only helping myself but I am helping many others as well.