Getting the right information at the diagnosis

I know that we are all vastly different, but I do wonder just how many people get the right information and support after the diagnosis of dementia has been given.

I had the benefit of having been diagnosed twice, but on both occasions the support and advice given was totally different.

After the first diagnosis, we just told that I had Lewy a Body Dementia, and then told to go away for 9 months, as I was not ill enough for the medication.

As my wife kindly pointed out, a lady could go away and return with a baby in that time.

I was not given any support or advice at this stage, something which always seemed very odd.

However after losing my job as an engineer, it was decided that we should move back to the family home in the North East of England.

We moved and went to see the new consultant, but found that the original hospital could not find my notes. After 6 months of waiting I was put through the diagnosis again, because my notes were still lost, but this was done in a far better way and more person centred and caring.

After the diagnosis was done, I was given the information about the medication which I would be tried on, and also about the Lewy body dementia, and was then asked to go home with my wife, where we could read it all and return in two weeks to ask any questions that we may have.

We were also told to ring the hospital if we had any questions which were very important. 

 After the two weeks I was given the medication and was told to do one or two things which would help me over the next period,

One was to set myself up a routine, so that life would be easier to control, and would ease the pressure on my wife.

I was also told to write my life story, so that my family and any grand children would learn who I was and where I came from, if the illness progressed at a fast rate.

As I was having graphic nightmares etc, I was also told to keep a diary, explaining what happened, as it would help the clinical psychologists understand more clearly.

This got so bad that I could not find a diary big enough, so I started writing it down on the Internet, and that's how the blog started, all by accident.

I say by accident, because I did not realise that this bog could be read by others. 

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

The sad thing is that many Alzheimer's Society Branches have now closed, so support of this nature is very hit and miss.

However if you have a local branch it is well worth contacting them to ask questions, and also see if anyone can help and advise you.

Charities can give a lot of positive advice  so please look them up, and see if they can help you.

There are many Internet chat rooms for this illness, but here again, not everyone is able to use the Internet to get this support.

But many people do not get the support and help that I got, and I do think more help needs to be out there for what people call a very traumatic diagnosis.

I also think that face to face support is far better than Internet support, as you can see the person.

This information does not all need to be given on the day of diagnosis but can be given over a few weeks,so that we do not get swamped.

 I do think the information about the medication and illness was welcomed and gave us an idea as to what could happen, although, as I said before we are all vastly different.

All individuals with individual problems symptoms and ways we deal with our problems. 

Having a support group would be ideal, so that we could ask other people with the illness how they coped with odd problems.

Another way would be to have a dementia nurse who could answer questions we have.

But I guess that it's all down to the hospital where this is done.

Writing the blog helped me quite a lot, and through chat rooms I met many new virtual friends, who also gave help and support.

 I have spoken to many people after their diagnosis and their response has been amazing, as they all say the same. Talking to professionals is helpful, but speaking to someone who has the illness, has more of an effect, as they are talking face to face about how they are coping with the illness.

No medical jargon, no big words, just saying it as it is.

Let's hope that things change in the future so we get more support at the point of diagnosis.


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