big day tommorrow bob is being accesed

[bel]

on making a sandwhich and cup of soup
he will probably manage ok
but if she had been with us today or most days she would see he is not capable most of the time
we had to have a new boiler fitted today bob was great a lot more relaxed since back on tabs but totaly confused she wont see this when she comes she is the one that wants to access him again on a bus i know there is a lot of good people out there and a lot of good support but it is failing us and i cant kick up more of a fuss its not me
love bel x

 

[christine_batch]

Dear Bel,
Wishing you and Bob all the best for the accessment.
Take Care
Love from
Christinex

 

[Grannie G]

Hello bel.

Please let us know how the assessment goes.

I know there does seem to be a lot of help out there, but much of it is unsuitable for many of us. We need our help tailor made to suit and the NHS is not flexible enough for this.

I do wish you could shout a bit more and make yourself heard. Not that you should have to, but it does seem to get some results.

Love xx

 

[Deeessex]

Hello Bel

I too find it frustrating that assessments can be completely different depending on the day and how the persomn. is. I think we probably place too much hope on them having a positive outcome and now my approach is different. I consider myself to be the "expert" after all I live with hubby and see things day to day. I know the areas he has difficulty with , I know the impact it has on him and us as a family. I now write to the psychiatrist prior to an appointment with information that reflects how things are rather than say them in front of my hubby as its upsets him.
I am not naturally a challenging person but I am afraid I have taken to challenging just to get people to listen and hear. I know when I ring one particular agency where we are trying to get my hubbys pension released early on ground of ill health, the response on the phone is almost "not you AGAIN" but I no longer care. He should be able to enjoy his pension now - he genuinely cant cope with work but do you think the ******* will listen. Beauracracy is rubbish - take something simple and make it as difficult as possible for individuals and their carers.
Sorry Bel gone on and on but my placid nature is rapidly changing to being quietly, charmingly challenging and questioning !!!!! It helps to pick your fights though. Other things that are not as important are just let go of.

Hope the assessment goes well. What outcome do you think you want? Let TP know
Best Wishes
Dee

 

[lesmisralbles]

Hello Bel

Why do we have to fight for basic thing's?
Please let us know the outcome.
Barb & RonX

 

[bel]

led bob to tears me shaking and hurt had to go out side

she came
bob and i thought it was to see him make cup of soup and sandwhich that in its self is upsetting to bob then she comes in bob is trying to put a diy pack together outside it is taking him a long time like all the things he does she says i can acess him at doing that instead i knew bob would not like that its putting him under pressure she came outside how well you are doing bob in her broken english asked him if he wanted to be accesed on what he was doing no he wanted to do what he thought she had come for he is right you cant tell him one thing and then change it so quickly he made ham sandwhich and cup of soup not much of a problem then she says he is doing good i cant see a problem carry on cooking Meals and doing your diy if he can create features in garden that i show off to any one he is ok he is not ok he has ftd he could not take hot things out of oven etc ftd is a lot diffrent to alz i wish more people knew about it i dont know a lot but i have learnt its not mainly memory but more actions love bel x

 

[lesmisralbles]

Bel, lot's of the same Ron cannot do

Do not worry, sleep on it tonight - Please.
Barb and Ron XX

 

[Skye]

ftd is a lot diffrent to alz i wish more people knew about it i dont know a lot but i have learnt its not mainly memory but more actions love bel x

Dear bel

You are absolutely right on this. I found the same, no-one had even heard of John's form of dementia. They have now!

Would it help to print off a few copies of the factsheet

http://www.alzheimers.org.uk/factsheet/404

and have them ready to hand out to your SW, OT and anyone else concerned?

I'm sorry your assessment didn't go well, it must have been very upsetting for you to be told that Bob was OK, when you know he's not. John was also able to make sandwiches and draw until almost end stage.

Come on Bel, we have to educate people!

Love,

 

[Deeessex]

Hi Bel
How sad that a task was picked and changed at such short notice. Although you don't want your loved one to have the pain of failing I wish more attention were paid to the carers information which if told discretly avoids placing your loved one pain. As I have said I now challenge people. In my professional life I am one of those therapists who might well be carrying out the assessment. Although on a professional level you should take on board carers feedback a lot is still based on the individuals ability to perform on a day with a task.

Sad as it is I have found it necessary to complete a "report" on my hubbies difficulties in what i hope is an accepted professional format for others to take notice of. Of course I cannot claim not to be biased but when faced with having to fight for every thing and justify everything I hope this might help us be listened too.

Bel hard as it is we all need to question the validity of these assessments and make sure we are heard.The cynic in me says that it often may suit others not to acknowledge a person needs more help than services currently give and mostly thats around funding!!!!

The best example I can quote is my hubbies company made a judgement on his ability to receive his pension on grounds of ill health from one letter sent from his consultant who had met him twice. It did not mention how he functions day to day, social difficulties he has, as we think he has Picks, the Occupational Health Dr has never seen him so how can she make the judgement. Its a scandal and one I am fighting.
We often place so much importance on doing and saying the right thing that, being polite, thinking others know best when in actual fact you know far more than a visiting professional completing an assessment!!!!!!!!!!!
Good Luck Bel - I hope you can get whatever you need in terms of support for your husband and you.
Dee x