Tonight I actually snapped

[Raggedrobin]

Well done Dave. My mother has been swearing blue murder this morning, being really horrid and doing stuff like using the 'n' word to some black staff. I am so deeply mortified, i just can't say. then I went in to pick up some stuff from the chemist, and this lovely man was saying how lovely and polite and kind my mother was. It made me sad, how all the niceness has just gone. I'm just saying this on this thread, to say I think we all know how awful it is when bit of the person can seem really quite sinister and it can be hard to remember it just isn't them.

 

[AlsoConfused]

Thanks for the update, that is good news Dave.

In your correspondence with the psychiatrists and their team, please make it absolutely clear THEY MUST NOT MENTION anything you've said in your wife's presence because she would become very upset and angry. They should know all this without you telling them ... it's just that I'm a "belt and braces" gal.

if you feel it's wise, ask other family members (the daughter in law) etc to email to the psychiatrist under the same conditions of confidentiality what they've noticed about your wife - what she can and can't do any longer and how she behaves. Several different "takes" on the same person and their behaviour can be helpful. Also - if things do go "belly up" - encouraging other family members to make their own independent input makes it less likely anyone involved can isolate and blame you for what you've said.

 

[SoyHJ]

Even though I had known almost 100% what OH's results were going to be the 'label' still came as a shock. (Very early AD). However until then one member of the family had been refusing to accept that anything much was wrong, it seemed to be all my word alone and I was being a drama queen. Having got an 'official label' he does now seem to realise that perhaps I wasn't totally exaggerating but still, he has no idea of the general stresses and strains as he doesn't have to live with it all the time. Think we are slowly breaking through to him though!

 

[AlsoConfused]

Nagging for the umpteenth time because I'm worried about your health and welfare...

Please Dave go and find yourself a GP who you can trust and respect - you need to have someone in your corner, especially someone who can check your blood pressure and stress levels.

 

[Dave K]

Thanks for the update, that is good news Dave.

In your correspondence with the psychiatrists and their team, please make it absolutely clear THEY MUST NOT MENTION anything you've said in your wife's presence because she would become very upset and angry. They should know all this without you telling them ... it's just that I'm a "belt and braces" gal.

if you feel it's wise, ask other family members (the daughter in law) etc to email to the psychiatrist under the same conditions of confidentiality what they've noticed about your wife - what she can and can't do any longer and how she behaves. Several different "takes" on the same person and their behaviour can be helpful. Also - if things do go "belly up" - encouraging other family members to make their own independent input makes it less likely anyone involved can isolate and blame you for what you've said.

My letter starts with:

Private & Confidential

For the attention of: Psychiatrist responsible for care of. Mrs ***(wife's full name)
Submitted by: Mr. *** (my full name). I am Mrs. *** (wife's full name)'s husband

I hope the following information is of use to you, it is imperative that you do not disclose to my wife that I have shared this information with you but I hope it will help when we attend for appointment on Wednesday 9th July 2014 at 15:00 hrs.

Is that good enough

 

[Rathbone]

Might help if you say why you don't want your wife to know - carer overload and persecution - otherwise they may say they are required to tell her as she is the patient. Others have any more info on this please? X

 

[nitram]

Dave

I had an arrangement with my wife's consultant that she did not come into the consulting room with me, she went with a nurse to be weighed and have her blood pressure taken.

Strangely when, after my chat with the consultant and another nurse, the consulting room door was opened the weighing and measuring was just finishing.

 

[Dave K]

Well done, Dave. And if the email add isn't forthcoming, you can take multiple copies with you on Weds. X Shelagh

I will print off a few copies if I do not hear anything as I am planning to get to the appointment very early (1 hour ahead) so there will be no excuses that they have not had the information

Still not heard anything but I will call again in about an hour, then again 1 hour later after I send the e-mail just to make sure that they have it

I will put the message in the email and attach a copy in "Word" and "pdf" formats as well, so they will have 3 copies

No excuses, no prisoners

 

[Dave K]

Might help if you say why you don't want your wife to know - carer overload and persecution - otherwise they may say they are required to tell her as she is the patient. Others have any more info on this please? X

Oh wow, there is so much to think about isn't there, looks like we have to cover our back's at every turn

This is so hard...... So sole destroying.....So painful.....

 

[Dave K]

Dave

I had an arrangement with my wife's consultant that she did not come into the consulting room with me, she went with a nurse to be weighed and have her blood pressure taken.

Strangely when, after my chat with the consultant and another nurse, the consulting room door was opened the weighing and measuring was just finishing.

Thanks for the suggestion, but my wife will not let me go in any room without her. FULL STOP. and I can understand this on her perspective

 

[Dave K]

Nagging for the umpteenth time because I'm worried about your health and welfare...

Please Dave go and find yourself a GP who you can trust and respect - you need to have someone in your corner, especially someone who can check your blood pressure and stress levels.

Going to get wife sorted first then worry about me after.

Thank you for your concerns, it is appreciated

 

[Dave K]

Even though I had known almost 100% what OH's results were going to be the 'label' still came as a shock. (Very early AD). However until then one member of the family had been refusing to accept that anything much was wrong, it seemed to be all my word alone and I was being a drama queen. Having got an 'official label' he does now seem to realise that perhaps I wasn't totally exaggerating but still, he has no idea of the general stresses and strains as he doesn't have to live with it all the time. Think we are slowly breaking through to him though!

Thank you for this, however if my wife has a label then I am sure I will not be surprised or in any form of shock, I need the diagnosis (label) to be able to understand, help and hopefully get the family on board

I know my wife is ill, only myself and 1 son (possibly 1 step-daughter) knows that she is ill, I want to get the rest of her family on board

My wife is in denial as is the rest of the family

So, 1 confirmed, 1 sort off and 17 others in denial

 

[Wolfsgirl]

Sounds like you are doing the very best you can, I didn't realise you had not received an official diagnosis.

Good luck for Wednesday but please remember, you are no less important than she is. x

 

[Dave K]

Sounds like you are doing the very best you can, I didn't realise you had not received an official diagnosis.

Good luck for Wednesday but please remember, you are no less important than she is. x

Was told that is could be frontotemporal dementia by memory team psychiatrist a few months ago, it could be that or it could be another form or forms, simply do not know until the official diagnosis on Wednesday

But I am sure that they are not going to say to us that wife has gout

 

[Raggedrobin]

My letter starts with:

Private & Confidential

For the attention of: Psychiatrist responsible for care of. Mrs ***(wife's full name)
Submitted by: Mr. *** (my full name). I am Mrs. *** (wife's full name)'s husband

I hope the following information is of use to you, it is imperative that you do not disclose to my wife that I have shared this information with you but I hope it will help when we attend for appointment on Wednesday 9th July 2014 at 15:00 hrs.

Is that good enough

That sounds perfect to me, Dave. remember to mention that your OH follows you around all the time, that is another symptom. X

 

[AlsoConfused]

Fingers and toes crossed that all goes well and you have an easy lead up to the appointment, Dave.

I feel a bit like Eeeaw (have I spelt his name correctly? I mean the pessimistic, totally negative and grouchy donkey in "Winnie the Pooh") but ... don't be surprised if your wife does pick up on the strong feelings swirling around this appointment and react negatively to them.

My Mum is always more difficult to deal with when there is some kind of "worry in the air", even though nothing is said that alerts her to it.

 

[Grace L]

Good work Dave, but in the letter I would add (it's what I did) something like
You do not have permission to reproduce or disclose the contents of this letter to anyone other than x y z ,
without my permission. PRINT THIS IN RED AND BOLD .

I came to VaD via my husbands stroke (unlucky as he was fit and healthy too), so my journey was very different from Alz, also the fact that he was still under 50 at the time of his stroke.

Like many people, it took more than a year, and even then the initial diagnosis from Psychology was
'most likely vascular dementia'.
It took another year, and many more tests (and me being pushy) , to have another diagnosis of VaD.

Even with this diagnosis (I made his family read the letters) J's family were all in denial.
(My relationship with in laws changed overnight, and they were furious if VaD were ever mentioned).

Dave, I hope your family can be more accepting when they hear and see things in 'black and white'.

 

[Rathbone]

Just rest in the knowledge, Dave, that you have done everything in your power (and some). Such very good luck to you and your wife on Wednesday. I am saying this now because we finally complete on our house tomorrow and I am sure to be tied up thinking about other things and didn't want to miss wishing you well. Whatever the outcome, we shall all look forward to hearing from you and supporting you both on the next stage of your journey. Love X Shelagh

 

[Dave K]

Got the call and e-mailed the following

Hi ****

Thank you for confirming your email address that I can sent my private and confidential information regarding my Wife's condition to be read before our visit on Wednesday 09 July 2014

Please confirm that you have received and have read this information before we attend the clinic by replying to this e-mail

If I have not heard from you before we leave for the visit I will bring a copy with me to be read by the psychiatrist before we have any consultation.

I have written my letter below and have attached 2 files to this e-mail (1 in Microsoft word and 1 in adobe pdf format) both are printable

If you are unable to read this e-mail or the download the attachments then please let me know as I will bring in a copy in person

Thank you for your time:

Below you will find my letter also attached are 2 files in word and pdf that you may wish to print out, both attachments are identical this email.

 

[Dave K]

Hurdle 2 sorted

"Hi

This is to confirm that I have received and printed the document below for Dr ****'s attention. I will bring this to his attention before the clinic appointment.

Regards

**** (Name)"