Information at point of diagnosis

This article got lost in the system but I managed to move it today

Diagnosis of dementia is hit and miss around the UK, which is very sad, as I would expect the health service to provide the same information everywhere.

Having had two diagnosis of Lewy body dementia, I was staggered at the diffences, in methods and information given after the diagnosis.

After the first horrific diagnosis, we were simply given the name of the illness, and I was then to
to return 9 months later to be seen again. 

I then had to move as I lost my job, but when I went to see my new consultant, they found that the original hospital had lost my notes, so I has to be re diagnosed to check that I did have this illness.

However the second diagnosis was done in a more caring way, and at the end I had an interview with the consultant, where we were told about possible medications, along with the information about the Lewy body dementia. 

We were given information sheets about these, and were asked if we had any questions. 

We were then asked to read this information at home and return in two weeks, to ask any questions and to start the medication if I agreed to try it. 

To be honest I really did not think that there was an option, as I wanted to live happily for a bit longer if possible.
This would also allow me to get my life into order, so that my wife was not left to sort things out on her own 

At this visit we were also told of any problems that the medication could throw up, but i still wanted to give it a go as I had nothing to lose

I was then told to set myself a routine, which would get me through the day, as take some pressure off my wife.

I was also told to write my life story, as most of my life was untold. This would help keep my brain active, and in the end would allow my future grand children to learn about my life, who I was, where i came from etc

We were also told to visit our local branch of the Alzheimer's Society where we would get extra support and help.

As I was having major problems with nightmares at nights, sometimes very graphic, I was asked if I would write them down, to see if the clinical psychologist could look at them.

This I could do as they were so graphic that I could still talk about them the next day

I could not find a diary big enough so I started doing this in a blog on line, not realising at the time what I was doing.
I though blogs were personal at the time and did not get read anywhere else

It was only about three months later I found out that others were actually reading this, it was a blog going world wide.

This is one problem with thus illness, as we do not always see the obvious.

However around a year later I found that this blog was actually helping other people to come to terms with their illness, and was helping carers understand what their loved ones were going through.

Information should be given at the point of diagnosis, by medical staff, however not all consultants will do this, and I know now that I was extremely lucky to be given the information and support at the time.

But a dementia nurse or support worker could do this, if they are really good, and they will give enough support to make sure that we understand what we are doing.

I must also point out that as this was done at a hospital dealing with dementia, we were also given emergency telephone numbers, if we needed help during the night or weekend. 

We all struggle to ask questions after a diagnosis like this, because if feels horrible when the diagnosis Is given, your brain goes blank. It's later on that the questions come, and by then there is no one to ask as the clinic has probably closed.

There are many chat rooms on the internet, where we can go to ask questions 24 hours a day, but this is only a good tool if we can use the internet and gave a computer. Some places have telephone call centres which can help.

I am hoping that in the future we will see more good quality information at the point of diagnosis, as recommended in the National Dementia Strategy, and this will carry us through a diagnosis that in all honesty no one wants.


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