When People with dementia or any other neurological illness go in to hospital they expect to be looked after in a caring and dignified manner, in other words they are treated with the same dignity and respect that everyone else takes for granted on a daily basis
It should also be remembered that hospitals can be very frightening places where people with dementia are concerned, because many feel well out of their custom zone. many struggle to cope, in areas full of machinery like scanners and x-ray machines.
Some cannot cope with lots of people, who they do not recognise, in unfamiliar places.
Many hospitals refuse to allow our carers to stay with us, and that needs to change especially when someone asks you questions, and you do not remember what was said, or asked.
Being asked to sign consent forms, when you may not really understand what is written down in front of you
To do this we have to ensure that all staff are trained in how to handle us, and have at least a basic idea of what we may be going through.
This idea is easier than it sounds these days, because of all of the Government rules and regulations, including targets which seem to be given a higher priority than good quality care of all patients no matter what illness they have.
But many people like myself who have neurological illnesses, and dementia, are at a disadvantage when it comes to being treated with respect and dignity in hospitals or care homes these days.
But unless we do something to help, things will stay as they are, so we must all step up and help others to understand our problems.
I admit that this is not easy, as many neurological illnesses like dementia, are not covered well enough in training, although these days Universities are trying to catch up, by using people with these illnesses to tell others about their daily problems.
Another way forward would be for all Hospitals to do their own training, although as conditions are hard in the National Health Service, and time is short this may well be impossible, due to all of the Government targets they have to stick to.
But there is no reason why people with these illnesses, should not be asked to give a presentation to any staff wishing to learn more.
It’s a well-known fact, that no two people with the same illness, struggle with the same symptoms, and problems, but at least by talking and listening to one person the Hospitals are learning how we deal with things and what to expect, if we struggle.
Basic things like support to find out where you are going, finding out where the toilets are etc, are all taken for granted, but to us it means quite a lot.
Many people like myself sometimes struggle to find the correct toilet as we don’t always understand the signs, especially toilet signs which can be confusing to say the least. This is because there seems to be no standard sign for toilets these days.
I get round this one by looking at the signs and telling myself that the ladies sign is someone with a skirt on, while the gents is a person with legs wide apart.
This can be distressing but at least having this in my memory I manage to cope. If I get really stuck I head for the disabled toilet
But how many people would understand this, many would simply laugh it off or say we are being silly.
This week I had to go into the University Hospital of North Durham, to have an injection in my hip, something I admit, I was not looking forward to, and was to say the least very nervous, and no longer like Hospitals, in fact I am terrified of them.
But the staff here were marvellous, because it was stated in my notes that I had Lewy Body Dementia. I confess that they made sure I was not left alone in a place I was unsure of, and they kept checking to make sure that I did not worry or wonder off.
My wife was allowed to stay with me in a small side ward, until I went off to the theatre, but the standard of care was amazing something my wife remarked on later
They all spoke in a very friendly manner, and I never heard anyone speaking in an abrupt manner.
I also have eyesight problems, so I occasionally have double vision, and although I was told that my glasses would be removed during the procedure, I was allowed to keep them on all of the time, which meant that I could actually see everyone clearly.
This was a big help to me as I did not have to struggle trying to see what was going on, or who was speaking to me
Its little things like this which make such a big difference
Thank goodness for Dragon voice activated software, which allows me to carry on these days with this blog. Without it I would be lost as there are days when I cannot use a computer keyboard properly.