Words don’t come as easy as they used to
I have realised that over the last week things have been harder to do than ever before, and it gets very distressing when you realise this is happening, and wonder just how long it can go on before, I stop doing as much and give in.
I have made quite a few mistakes this week by using the wrong words, and it caused some distress both to my wife and to myself, when I realised what had happened. I know that words don’t come out the way they used, to and whether the brain is trying to go too fast for me, or I am trying to go too fast for my brain, I really don’t know. I know that when I am using the keyboard I am trying to write it everything down before I forget what I am trying to say, so perhaps its just the brain has slowed down so much that its difficult to come to terms with.
While I was talking to the student nurses the other day, I made a mistake, and used the wrong word on one occasion, something that my wife pointed out later, although it was not rude or nasty, it could have been picked up the wrong way by some, and I was upset about it.
This was because I write the talk out in size 14 letters on the computer, and this takes about a week or sometimes two to complete, made worse sometimes because I sometimes repeat things I have already written down, yet I did not notice until my wife pointed it out.
But on the day I don’t always see all the words that are written down in front of me.
This has been noticed on a few occasions when I get an e-mail and 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 each time and it gets distressing, when you don’t understand something or totally misread it, and its only when my wife reads the same thing that I realise I have picked it up the wrong way, and sometimes gets a totally different meaning to what was meant.
There are times like this when I really hate this illness, as it destroys your ability to control your life, and where 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 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 so much.
Simple things like typing have become a nightmare, because although I have always been right-handed, I have now found 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 through using voice activated software like the Dragon I have been able to get around some of the problems, and life has become easier.
The problem with using voice activated software is that people think you're talking to yourself, when in fact you're talking to the computer which is a rather strange especially when you see the words being written out in front of you without touching the keyboard.
It is times like this when I realise how easy it is for other people to be misunderstood in hospitals and care homes etc, and then be treated with lack of respect because the staff thought they were rude, just because they 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.
I guess this is a steep learning curve for myself and my poor wife, because although I struggle and lose it at times, she must find it very distressing to see, knowing full well that before much longer I will not be as active as I am today.
By using this blog I can explain my life, my problems with dementia and my efforts to get around the problems I find it life.
I confess that not everyone can understand or react the way I do, as they may be in the mid to later stages of illness, and that is something which will come to me eventually, and I confess I am not looking forward to it, but as we all know eventually these illnesses catch up with you, and dementia is hard for everyone to cope with, from a wives and loved ones to our extended family and friends.
As we know this illness affects not only those with this illness but those around, and is not something that anyone wants, because as we know there is no cure, the medication only slows it down enough for us to enjoy life a bit longer and perhaps see things we would never have expected to see, like my lovely grandchildren.
Although this 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 then I am helping many others.
So this gives me encouragement to carry on and try to explain my life my problems, and where possible my successes in beating this illness although I confess that there are more bad days which seem to overshadow the good days.
The amazing thing is that the blog is now read in 63 countries, and although, I don't see who is reading this, it is encouraging me to carry on for a while longer, and I would love to hear from others.