giving up on bob

[bel]

thanks all for your support it means so much but you dont have to worry any more I AM BEING STUPID ---had big meeting today at hospital consultant says bobs memory has gone down from 50 to 32 over the last year but thats not too bad at all and nothing to be worried about tests he did with nikki - pscologist show he does not get mixed up does not say unappropriate things or get confused etc i said but thats a controlled test its not real life the good thing is nothing was showing on brain scans as nikki said there might be more going on and i was worried - out come was he can not say bob has dementia or ftd it could be stress we could go for a second opinion he said but it would mean a lot of travelling and more tests and for what --I AM SO GLAD there is nothing much wrong with him i must be imaging it for the last 4 years - maybe he did not have to give up his bussiness maybe we did not have to sell our house maybe he did not have to give up his driving liscence --IF IT IS ONLY STRESS bel x

 

[Grannie G]

Oh bel

I don`t know what to think. I don`t know whether to be happy or sad for you. All those `maybes`.
If Bob has been and is suffering from stress, will he be offered any medication to ease it for him?
I hope so.
Love xx

 

[Regina]

As I'm sure we all know, doctors aren't always right. I learned this from incidences with my children years ago. You are in a predicament for sure. I'm so sorry that you had to go through it, but listen to your intuition too. I keep records (intermittant) so I can bring it with me to the doctor and show them what the daily is like.
Take one day at a time, or one minute at a time if you need to.

 

[bel]

thanks sylvia and regina

i am calming down a bit now STRESS what a load of rubbish bob is on and has been on venlafaxine for 4 years he is so laid back at times he is nearly asleep apart from the occasional anger noyoutbursts - i know no matter what they say its some form of dementia and if any one of them spent 48 hours with bob they would see it too tests written and verble are not done in the real world with distractions like noises etc but in a quite room so its not like seeing him react as he would day to day your right regina doctors do get it wrong and they have with bob but at the end of the day what does it matter what they call it he is stillnot well i just felt like --they think im making it up love belx

 

[Grannie G]

I`m quite shocked by this information.
Someone is making a big mistake somewhere and it isn`t you bel. You can only go by what you`ve been told.
Have you the strength to take it further?

 

[gigi]

Hello Bel

I too am shocked by this.....

In effect Bob was diagnosed with dementia 4 years ago.....

AM SO GLAD there is nothing much wrong with him i must be imaging it for the last 4 years - maybe he did not have to give up his bussiness maybe we did not have to sell our house maybe he did not have to give up his driving liscence --IF IT

But now they're saying he doesn't have dementia.....

I can well understand your relief....

But this surely is a "misdiagnosis". Either that or the person you saw today is misdiagnosing.

To take this further is going to require time and energy..

I was just wondering if PALS could help you...(Patient Advice Liaison Service)..I'd also be inclined to write a letter to your local PCT...and inform them of this...PALS may help you with this.

There should also be an Ombudsman ...I'll try to find out...who you can address your concerns to.

Love gigi xx

 

[gigi]

Hello again Bel...

I've just had a very quick look...this website will give you local numbers to access help and information...

www.adviceguide.org.uk/index/family_parent/health/nhs_complaints.htm - 40k -

Please keep posting and I'm sure we can help you to sort this out...we'll certainly do our best.

I was wondering if your family could help you with this too.....


love gigi xx

 

[Sam Iam]

Bel,
its sounds as though Bob & you are being sent on a wild goose chase, why dont the professional's listen to the people closest to their patients instead of playing the "I know btter then you" card.
Best wishes to you & Bob. XX

 

[bel]

thanks again all

this is a misdiognoses i knowFOR SURE BUTbob does not want me to chase it or make a fuss-complain and really i feel too tired to do so myself what diffrence will it make to bob the only diffrence would be to me TO say I TOLD YOU I WAS RIGHT it is enough coping with the way bob is day to day im only just hanging on in there now i am trying to turn the anger i feel about this around to humor cos thats the way bob is daft as a brush so now when he fogot what i told him dropped his cup of tea forgot to switch of lights in shop while i was locking up i said dont worry theres nothing wrong with you ITS ONLY STRESS and we laughed so now everything he does will be down to stress and we will make a joke of it i hope x love belx

 

[gigi]

Dear Bel

I do understand.....

this is a misdiognoses i knowFOR SURE BUTbob does not want me to chase it or make a fuss-complain and really i feel too tired to do so myself

But a phone call to PALS? Put them in the picture?

Or a family member who could do it on your behalf?

I'll stop nagging now..think about it for a day or two.

You may feel differently when you've slept on it.

love gigi xx

 

[Bookworm]

hoping to say the right thing

Hi Bel - I'm new round here - so if what i say isn't right for you, listen to the experienced voices - I've spent 3 years telling my self that the things that have been going wrong are my fault - maybe if I were a better person, a better communicator, less stressy myself, less busy, a better wife.....then the problems I observe in my husband wouldn't be there i.e. I'm the cause of them - most of the time now i know this isn't true, most of the last 3 years I've known this isn't true - but we still don't have a diagnosis and things are getting far worse - used to be worse by the year, then worse 6 monthly - now I see worsening month to month - & then i think - well he can do so much & like you we have got to a worse stage where it is so bad that we can see the funny side of it a bit & laugh. I'm thinking these are (despite what they appear) the good times (gulps back a tear here) 'cos if it is what i am pretty sure it is.....well you know.....

It was helpful to read your story as it is a little like mine - slow to diagnose - nothing to measure in the clinic but silly stuff at home.

 

[patradnor]

Dear Bel
I know exactly what you are going through,as i had to fight for 12 years for a definite diagnosis.We were told it was then it wasnt,Dave was too young,he was 37,and believe it or not i was even told to divorce Dave and he would get better,that was supposed to be a joke by the doctor.I got close friends and family to write about how Dave use to be and how he was now,and armed with all that evidence doctors started to listen.Sorry to go on but i get so angry that doctors are not learning anything about how to diagnose dementia and how to treat patients.
Love and Hugs Pat x