An exploration of the UK unpaid carer's world

2gether here Letter to caree 16 03 15                             hidden page      


Preamble

A

The website author has intercepted all his wife's correspondence since 2013 and, in the present context, November 2014 when she went into hospital.  

B

This letter came in a plain envelope with no indication of source outside.  The address etc was hand-written.  It could have come from a friend.  

C

Mrs H is identified by the edited word caree.

D

Links added by website author.

E

10 on  the 2gether  Letter to caree page 16 03 15 here refers


Dear Dr ....


This lovely 78 year old lady was assessed at her home by Memory Assessment Nurse  MH with her husband present. This memory assessment along with a CT scan and blood results has been discussed with our consultant Psychiatrist Dr E. Please see below for full report, diagnosis and action plan.

Presenting Situation

Caree has experienced gradual onset of memory impairment over the past 12 months. Feels this has got worse since an admission to hospital due to a damaged hip. It is particularly short term memory impairment; long term memory is patchy but generally intact. Caree experiences word finding difficulties at times and sometimes uses the wrong words. She feels this is something that worsens when talking to new people. Caree is cared for by her husband who has also noticed memory troubles with his wife. Caree has poor mobility and uses a wheelchair to mobilise. She has a carer that attends once daily to help her with her morning ADLs.

ACE-111 Results

Overall score 56/100

Attention 11/18

Memory 9/26,

Fluency 6/14,

Language 21/26,

Visuospatial 9/16

BADLS 24/60


Summary

Diagnostic Review with Dr E and MH

Caree has experienced a several year history of progressive cognitive impairment now with global impairments (ACE-3) 56/100. Clinical history from GP includes a change in character becoming reclusive and with psycho-motor retardation attributed to depression. The above is occurring on a back ground of ischaemic heart disease. Ct scan has shown predominant fronto-temporal changes.

Caree is clearly suffering from a moderately severe dementia, the suspicion is that this is a fronto-temporal dementia; further neuropsychology testing would shed more light on this possibility. Dr E would be comfortable with caree trial an ACI medication but she would need an ECG and he would stop these swiftly if there were any worsening of her symptoms as patients with FTD sometimes do poorly with ACIs.

I have been to visit caree and her husband to deliver a diagnosis of fronto-temporal dementia. I have explained that as a service we could offer further specialist assessment to determine this in more detail however they are happy to leave the diagnosis as it is currently.[[[[ see below at   Aspects of 2gether being termed atrocious ]]]]   I have discussed the possibility of caree starting an ACI medication if her ECG allows and it is something they are going to have a think about. I have left it that they will contact the memory clinic when they have made a decision. If they do decided to commence with this I will arrange an ECG and monitor the initiation of this medication for the first 28 days.

In the meanwhile I will refer Caree to a Community Dementia Nurse and a Dementia Adviser who can signpost and offer them support and advice* . I have left Carees with an information pack on Dementia.

Plan

-Caree to let me know if she wishes to trail sic an ACI medication

-Referral made to Community Dementia Nurse

-Referral made to dementia Adviser

Yours sincerely,

AD

Memory Assessment Nurse


_______________________________________________________________________________________

Soon after the letter arrived, carer contacted Dr L re the medication.  As a result, " Donepezil 5mg tablets  -  One To Be Taken 

At Night to help control onset dementia" appears on the left here.  


pagetop  here    for pasting    2gether  Letter to caree 16 03 15 here  

                 Annual greeting 2015 here


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Aspects of 2gether being termed atrocious

I wrote to 2gether showing their letter with the following preface.  2gether has since changed the policy referred to,


Dear Mrs

It is 2g policy to send all such letters to the caree irrespective of ability to comprehend technical and medical terms used within them.  This is probably of no consequence as anyone in your condition, after a lot of initial upset and confusion, will have forgotten about it within a day or two. We say probably as we do not know if there is any residue hidden deep in the mind.

Furthermore, we are not interested in any effect this has on you or your carer.

It is possibly of no consequence as any carer with sense will have ensured that all caree correspondence will have been opened before the caree reads it.   

Although I say that I will refer you to a CDN and a DA who can signpost and offer you and your husband support, this will amount to nothing until late August. [ Letter to caree dated 16 03 15] .  By then, your husband will have been in touch with 2g to find out what is going on.  

Being in the mind  business, as you may have noted,  claire-voyancy is second nature  We forecast that in early July, your husband will contact us.  We propose to ignore any requests he makes until we suspect the high probability of a complaint being made.  

It is not proposed to contact him with details and we will use a third party to do this.  2gether wrote to Social Services asking it to tell me that a home assessment would follow.  


End of Preface.


I wrote to 2gether several times after this with no result.  I then pointed it to Dementia Triangle of Care page  here.  Still nothing.  I sent it the Person-centred Tests Home page here which brought, at best, a superficial response.


____________________________________________________________________________________________________

2g Caree assessment 17 August 2015                                                     


Present: caree, carer, SH, JT.   

SH & JT. would benefit from reading    -    TDH (Mrs) - Medication list and medical history here

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Bristol Activities of Daily Living Scale - BADLS - here here    

Assessment 29 Sept 2014    No mention by SH or JT.

>>>>>>>>>>>>>>>>>>

Medical scales here

The Mini Mental State Examination (MMSE) here.  

Alzheimer’s Society - Assessment and diagnosis pdf   Factsheet 426LP   here  

Assessing cognition in older people: a practical toolkit for health professionals here pdf

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Q & A conducted by SH    


1

Do you have visions of strange people?   No.  Google

2

Do you see shadows, feel agitated?  No.

3

Do you worry?  No.

4

Are you happy to get out of bed?  Yes.

5

You don't say anything you wouldn't like to?  No. ie I don't say etc.  Curious Q wording for the situation..

6

Are you irritable at times?  No.

7

Do you play with objects over and over again?  No.   [Caree is still obsessional about proportion of bedding between us, doors, fluff, and folding clothes and napkins. source C1  Caree - three days in Worcs Royal Hospital and the 1.6.5 item here. ]

8

Sleep well?  Yes.   "Mrs H has broken all records!  Three night consecutively and no hour-long session of getting up." Day 4 here.  On return, our nights were and are still broken by at least one session lasting an hour of caree on the commode.  Letter to be given to GP on 1 Sept.

9

Appetite?  Ten minutes discussion on food.

10

Adapted cutlery? No.  I eat everything with spoon and fork.  More here

11

Carers in the morning?  I can do most of the washing.  Can't put my  trousers on.  Carer spoke about the main paid carer.  She went with caree/carer on a Canal-boat holiday.  However, illness struck. here

12

JT - any mishaps in Porthcawl?  No.

13

Clean your teeth?  Yes.

14

Go shopping?!!!  My husband does it all.  Our elder daughter also takes me.  [Retail therapy but three times a year.] Carer said he does all the household organisation and shopping etc and it runs on the large scale into his respite time. 

15

Your finances?  No.  [Carer said that their elder daughter has £ LPA.] 

16

Games, hobbies. No.  

17

Three words to remember - lemon   key     ball                use pictures in your mind  


18 

7 from 100            92       

7 from 92              97        

7          97             14

7          14               7


19

Repeat    -   All that glitters is not gold  

20

Wear glasses?     Some of the time.  Reading               Test conducted.

21

Three words to remember?    - lemon   key     ball 


Conversation 

Included carer asking     Where did we live after Scotland?     Couldn't remember.   It was Canterbury.

JT How long in Ross?      Couldn't remember.   11   years

Carer said he had asked 2g for tests   25 September update - absolutely nothing done in carer direction but a third party had been involved.

>>>>>>>>>>>>>

Carer asked about the test.  

SH said                         Herebrooks Test. Unable to source here.   

                                     The Mini Mental State Examination (MMSE) here.  Unable to source example.   

Carer did not say again in front of carer that such tests have been requested.


C1.3  Request

Lists of the “What year is it?” questions and similar are just one approach I assume are used at 2g and I ask to be given as much as possible to help caree.  Also, please supply record sheets so that performance can be tracked and fed to you, CPNs, in GP discussion, perhaps DNs etc.   

 


 


pagetop here   for pasting         2gether  Letter to caree 16 03 15 here

                                          Annual greeting 2015 here