brain scans

[bel]

why bob has had brain scans each year for 4 years
not shown anything i was led to beleive nothing would show
needs an autopsy after death --too late i would not go there
now they are saying afert 4 years with tests etc they think somthing will show
i dont undrestand and i did not want to hear any more
she said from tests there are other problems but wanted to wait till scans were in
they know a bit more than i do
i feel there is a lot more going on that cos i am week they think i cant deal with it sorry bel x

 

[christine_batch]

Dear Bel,

You have no need to say sorry. I am sorry that you are both having to go through this.

I wish they would not say before tests, there may be problems.
Most of the time they never can find anything.

Do hope hand is healing nicely.

Love to you both
Christine xx

 

[bel]

scans

thanks chris
my daughter said the same they should not of said any thing until all scans and tests were ready to be revealed
what with bobs other changes it has just made me worry more
thanks for asking- my hand is still very painful but i can move it a bit more
love bel x

 

[Margaret W]

Bel

You are not weak, none of us dealing with these problems are weak. Vulnerable, tired, scared, yes, but not weak.

Dont apologise, you are doing you best in a difficult situation.

Much love

Margaret

 

[bel]

dont want bob to hear any thing bad in case he worries and is made worse

an appointment came through today for 23 of january we are going away for a week on 18th so phoned consultants secatry - can they make it earlier she says she will look into it as psycologist plus consultant bob and i need to be presant - they have never asked for all of us before
i am worried but my main concern is if what they says makes bob more concerned about his condition for 4 years on the whole we have laughed and joked and made light of his illness - its the way bob can deal with it i feel he might go down even quicker if he is told the wrong thing - my fault i have tried to make him feel as normal as possible and white wash over the things he dose and says
am i wrong - i am thinking of asking nikki - psycologist dose bob need to be presant at meeting and explain the reason why
i would appreciate your thoughts love bel x

 

[Grannie G]

Dear Bel.

Ask Nikki or write to the consultant and tell them you don`t want Bob to know. They will tell you separately what you need to know but will not tell Bob.
Love xx

 

[bel]

thanks sylvia

consultants secatry phoned today to make new appointment its now the end of january
i have been thinking about it all weekend and i am sure its best if bob dosent know the full story
i asked her to tell the doctor how i felt now i will also tell nikki
went to our caravn the weekend - xmas shopping - i am in my mobility scooter while waiting to cross the road bob says ok to go and starts walking NO i shouted there was 2 lanes of traffic both comming the same way the first lane was clear but the other one was not sorry i forgot--
he must know himself he is so much worse he dosent need them to tell him thanks love beol x

 

[lesmisralbles]

Hello Bel

Ron does not know that he has dementia.
He does not need to know.
All his probems are related to Parkinson's (he thinks) And, they are.
He saw his mum go through dementia and his sister, and my step father.
Why worry him, so I tell fibs
What he does not know will not hurt him.
Trouble is, what I know is hurting me like HELL.
Sending you both love.
Barb XX

 

[bel]

hurting like hell

yes barb you are right ron and bob dont need to know it would not help i am sure but i agree we hurt like hell
i get so tired of putting on this brave face to the world
truth is i cant wait to go to bed at night but i dont want to get up in the morning cos its not my bob but this nasty adult child who i have to tell what to do slowly one thing at a time watch he is safe etc and then the slightest thing wil get him shouting at me so i find i am raising my vouise more and more its not me --
i know i have had to change and i hate the person i am
i was a soft kind caring loving person now with bob i feel like a stern parent and i hate it sorry i am moaning
love bel x

 

[Grannie G]

Dear Bel

You are still a soft kind caring person and that`s why the way you have to be with Bob hurts you so much.

It is very hard work taking full responsibility for two adults. At least when we had children we shared the responsibility. Now it is all on our shoulders with no-one to share it with.

And that`s why you`re tired. It`s because you have a sick husband and you are trying your best to make life good for him.

Love xx

 

[lesmisralbles]

Dear Bel

i get so tired of putting on this brave face to the world

So do I Bel, so do I
With love Barb X

 

[jenniferpa]

The other thing to consider is that every day, it seems, technology improves and while 4 years ago they might not have been able to see anything, it's possible with new techniques they might. Not that I think it's particularly helpful - you know something is wrong, and if it can't be fixed, there's not much point in having yet more details.

Love

 

[bel]

thanks all

thanks i know they have moved on with tests etc
but as niki said even if they show somthing there is nothing they can do
if you could of seen my xmas card from bob that i had to tell him to write you would of cried
he is dxlectic but his cards mean the world to me i have kept them all over 38 years no one but me would be able to understand them
but what he did hit my heart big time all about my thumbs the hard work we do our hols in january it took him ages as it always does my granchildren 8 and ten could do better BUT to me it is far more than i could hope for
sending love to all us tps try to keep on keeping in there love bel x

 

[KenC]

All these tests are very distressing for the family and the carers, but they also have an impact on those with the illness.

I was diagnosed in 2003 with early onset dementia, I then lost my job and home, so I moved back to the North East, after my mother died.

Having brought all the test results with us we went to see our new consultant, but sadly by then (Three months), we found that all the notes at the previous hospital had been lost. So I had to be sent for all the tests and scans again. This was very stressful to me, aswell as my wife.
In the end the diagnosis was confirmed by the new consultant, and then days later my old notes appeared, with the same answers to all the tests.

However I was told that I was now ready for the medication, and to my delight it helped me quite a lot.

Sadly 6 months ago this consultant retired and I got a new consultant who wanted to put me through all the tests again as she was not at all happy, because I had not deteriated fast enough in her words.

This put my through absolute hell for around three months, but now it appears that the scans have come up with something new that was not obvious before. (Still dementia but a variation of two types).

I resently spoke to a Professor in Dementia at a conference, and he said that some doctors prefer to retest people on a regular basis, in the hope that they will detect a problem, but not everyone shows signs of dementia on the scans, many have to wait until the mid to later stages to see anything on a scan.

I confess that many doctors and consultants do not understand the stress and worry they put people through especially those with dementia.

However not everyone gets the right diagnosis
first time round, many like myself end up being retested only to end up with a diagnosis that is a variation of two types of this illness.

I hope that one day we will be scanned and get the results faster than we do now, and hopefully they will stop putting people through all this stress.

The main problem is that there are well over 100 variations of dementia so this may take a long time to happen.


Best Wishes

Ken