As someone who used to write risk assessments etc., in industry I often wonder how people can write risk assessment for a patient who has dementia, because we never do the things others expect us to do.
It’s not that we don’t want to do certain things, it’s because our brain is functioning in a different way to normal peoples brains, if I dare say normal people, because no one really knows what is normal
When I was working I did assessments for every tradesman and contractor in the college, yet now I find myself wondering how I could do an assessment on myself when the brain changes so much each day.
Nothing is normal in this illness, and therefore nothing can be taken for granted, as in normal people who carry on regardless.
I was at a meeting once when a staff member was talking about writing risk assessments for people with dementia, and I vaguely remember asking, how can you do such a thing when you had no idea what it's like to live with the illness.
This is something I really do not understand as people claim to be able to write risk assessments for those who had this illness, yet those of us who have the illness are capable of doing many different things, sometimes very silly things without thinking.
My brain changes from hour to hour day to day, so how can someone tell me that they can write risk assessment for me, when I don't know what I'm capable of in the next hour?
When I was diagnosed with this illness I was told things would change sometimes on a daily basis, or an hourly basis, but I would have to accept this and move on and not dwell on it, otherwise it could destroy me.
However I was not aware that things have changed so much or so fast. I had expected very slow changes, but nothing like this.
We're always being told that we should keep fit in any way we can whether it be swimming, walking going to the gym or in some cases dancing.
Yet many of the staff of these places are untrained to assess the ability of someone with dementia, and they don't really know what to expect, if we fall over or lose our balance, something which can happen on a regular basis.
I can no longer swim as I have lost my cool coordination, and I found that each time I moved my arms my mouth would open, so I ended up swallowing more water than enough.
So I ended up giving up swimming before I drowned myself.
I went to the gym, in the hope that this would help me to keep fit, but soon found that there were problems there, because I could not work or understand the treadmill. After coming off the back of the machine three times, I was told to leave the gym because I was being a distraction and a menace to others in the area.
This happened even though the instructor was warned that I had dementia, but the sad fact was that this instructor had no idea about the illness, nor did she seem to care.
After this I gave up the gym as a bad job so I started to walk, but there are times when I fall over when I lose my balance, but I am not giving up just, to sit in a chair.
I could get lost or disorientated, but then I can use a tracking device, one of those things that officials hate, as it’s against our civil liberties?
It’s against our civil liberties to be kept away from technology which can assist us to live a life without being followed by our caregivers and families 24 hours a day, and If it gives us the freedom to do our own thing when we want to, then it has to be a good thing.
Officials use technology each and every day, so why should it be wrong for us to use it and good for them to use it.
Anyway if my wife wanted to track me on our computer, with one of those things that’s up to her, it does not bother me, because if she is happy knowing that I am safe, then that’s all that matters.
Why is it that I can slowly write things out, yet when it comes to talking or doing speeches I cannot see the words in front of me or don't recognize them.
This does not make sense to me in the slightest and at times it is very distressing.
Surely if I write the words out I should recognize them when trying to read them, it makes no sense at all that I write all this stuff, and yet when I read back I don't always understand what I was trying to get at, and sometimes, see some very bad mistakes in spelling and grammar.
I was always proud of my spelling and English grammar at school now it’s all gone
Sometimes the wrong words that come out which can be embarrassing or in some cases upsetting either to myself or those around me, it's not deliberate it just happens, so how do you make allowances for this when you don't know it's going to happen in the first place.
There are times I make a joke of it saying that my mouth is not in gear with my brain, but it's still hurtful and very upsetting when it happens because it's not deliberate.
Then some smart Alec says, that I am being rude about those with dementia!, why because I am making fun of myself, rather than get upset and burst into tears
Early on in the diagnosis I noticed that road signs would change quite a lot or so I thought, then I realised that the signs were not changing it was my brain telling me the sign said one thing one moment, and then something else the second time round.
I have the same problem with letters and e-mails because each time I read them I get a different answer and a totally different meaning, but this is because the brain is misinterpreting them each time, so I end up leaving it all to my wife to read then we get the right-answer.
This usually leads to more discussion about whether my wife's version was right, or whether mine was right.
I just don't understand why the brain plays all of these tricks on us.
If I am sat in a room with people I don't always understand what is being said to me, and sometimes it's difficult to work out whether someone is talking to me because to voice seems to be disjointed and remote.
When I'm in a room full of people and someone stops just to speak, I find it extremely difficult to understand what that person is saying to me, as I can often hear other people speaking over the top.
This sometimes leads me to stand with one finger in one ear to keep the noise down, or I turn my head so that my ear is facing the person that speaking to me. I then have to explain that I am listening, but am having trouble tuning in to what you're saying, and not being rude.
Sometimes in busy rooms the noise can be unbearable, and it often feels as if they're all 100 voices talking to me at the same time and becomes very unnerving, and in some cases frightening.
I do have hearing aids which help with this situation, but sometimes it's difficult in a busy room if there is no hearing loop, so I tend to leave them out.
Revolving doors and escalators can be a nightmare to people with this illness, and when it comes to revolving doors I won't go there.
I simply will not walk through one of those things unless my wife is my side as I cannot always judge the right time to step inside.
Escalators are difficult but can be got round, as I simply wait for the right time to step on although this can be very difficult in places like London, when it seems that everyone is behind me and they all want to go down or up at the same time.
Why is it when I'm crossing the road I'm not sure whether the car I can see, is close or further away than my brain is telling me.
I have been caught out on many occasions when I stepped out onto the road only to find that the vehicle was very close indeed, meaning that I didn't move fast I was going to be knocked down.
This often leads to drivers getting annoyed at me as if I'd done it on purpose.
Judging distances and speed is when you have this illness is a disaster waiting to happen, because the brain is telling us something which is not real or is difficult to understand.
We all lose things in our lives within this illness we're always putting things down and forgetting where we put them, on this leads to utter frustration because you always find the item later on in a place that you've never looked, or on many occasions it was right under your nose in the most obvious place. .
Very bad dreams and nightmares
How do you do an assessment for someone who has very bad dreams or nightmares, something which is part of Lewy Body dementia and Parkinson's disease?
I have very few nights when I sleep through without these problems and some are so graphic that I can explain all about the following day in quite a lot of detail.
So in a situation like this how do you cope with this as far as taking the risk is concerned?
You cannot fasten them down, as this would be classed as abuse. You cannot drug them otherwise they may not be able to wake up from these horrors and possibly risk a heart attack.
On this occasion it all comes down to proper training of the illness, taking on board the problems which may or may not happen. But we must remember that each person with dementia is vastly different to the next person, and each will experience different symptoms and problems.
So one size does not fit all, and it cannot fit all.
So assessments of the illness must be open and far reaching as writing an assessment for one person certainly would not fit the next, and you cannot be forced to do something when you have this illness otherwise it becomes cruelty and or abuse.
There are many things which happen, but are not down here, simply because I cannot remember them all when writing, but allowances must be made for every item which may happen at some stage.
As I have just said I cannot remember quite a few of my problems so how can someone write an assessment, if I cannot tell them what may or may not happen
So when you look at all of this how it is possible for someone to do the risk assessment on the person with dementia, when we really haven't a clue what we are capable of in the next few minutes or hours or days.
Many people say, people with dementia get very agitated, but surely this is because things are not working out the way they should or go the way we expect them to, and it's down to pure frustration although it might come out as aggression or agitation.
Most people make mistakes in life and get away with it, but for some sad reason this never happens when the person cause dementia.
Let’s be open and honest here, Risk Assessments are in many cases just more RED TAPE for the officials in cosy offices.
Do our caregivers write an assessment each day on what we are going to do? No because they live with us 24/7 and they know that anything can and will happen, and they just have to try to keep us on the right track and pick up the pieces when we come off the rails.
These people know more about the illness than the professionals because like us they are living with it each and every day.
They are not trained to do the job, and to be honest who would have that job, working 24/7 without pay and sometimes without the respect of the patient or public services.
But they learn as they go, and do it with all of the love and affection they can muster, even though they may be very tired and at times, at their wits end with worry about us, the ones with dementia, and the unpredictable ones.