On the difficulties of getting diagnosis

[Brucie]

I'm just re-arranging my files, including those concerning my wife, Jan, who has advanced dementia.

I came across the following, that was sent to us four years after her symptoms started. I had already figured it was dementia but it was a further 4 years until the experts agreed.

...my own view about the stresses placed on you in recent years by giving up your job, and your husband's long trip to work in Marlow, and the relative isolation of your current accommodation have conspired to produce problems that I think are mainly stress based rather than due to any organic impairment of your brain. I am delighted that the results are so satisfactory.

So he gave her anti depressants.

This letter followed several one hour consultations plus seven consultations with a psychologist recommended by the person above.

All just history now, and only dementia to blame.

I've posted this because there have been quite a few posts on TP about the difficulties of getting diagnosis. I guess we've all been there...

 

[rummy]

That really is astounding. When I look back at the last four years I too am shocked by One: how hard it was to get a diagnosis, Two: how bad it has progressed and Three: that even though I handle this pretty well, I am sure I have alot more gray hair than I ordinarily would!
Debbie

 

[noelphobic]

I can't even remember when we were given a diagnosis! I know that my mum used to look after my son while I worked and that had to stop about 10 years ago as it was becoming obvious that he was looking after her more than she was looking after him, and he was only about 7 or 8 years old at the time.

We were told at one point that she had multi-infarct dementia (now known as vascular). Then at some point Lewy Bodies was mentioned. When she was recently assessed for her nursing home needs she was deemed to have Alzheimers. There is also another rare condition that begins with B that I can't remember the name of!

I know it is said that you only get a true diagnosis after death and only then if a post mortem is performed. I assume that they wouldn't perform a post mortem for this reason alone? There would presumably need to be another reason and this would be incidental?

 

[connie]

Thanks Brucie,

You have been more than through the system, so it really does help to put things in perspective.

Love

 

[bel]

brucie

hi brucie
just come across your thread how hard for diagnosis
I KNOW ITS HARD FOR THE MEDICAL PEOPLE to diagnois

BUT IT IS A LOT HARDER FOR US WHO HAVE LOVED ONES
we know there is a major problem and in most cases has been for a long time but we are meant to feel its in our imagination
one so called Dementia specialist said to us about 5 years ago I AM SORRY TO TELL YOU YOUR HUSBAND DOES NOT HAVE DEMENTIA

thanks brucie
love bel x

 

[Amy]

Yes Bel,
And whilst they are saying there is nothing wrong, what treatment are the sufferers missing out on?
Amy