An exploration of the UK unpaid carer's world

                       Life for carees and carers is complicated enough without needing to cope with 2g

                                                         New readers start with the Overview here 

                  All pages addressed to 2g (see email for identity) are hidden.  Some other pages are open to all readers.

Update 11 Feb 2016

These pages demonstrate a battle to obtain reasonable service.  After numerous requests, a meeting was held before Xmas 2015 with the Deputy Chairman who couldn't even get my name right.  I withdrew from all contact with 2g soon after.

A Correspondence

Please address all correspondence relating to my wife, to me.  more here 

B Dear AD  Memory Assessment Nurse   

There's a lot here and my 2011 OCD sessions receive mention.  When in touch with our family GP and other healthcare professionals (HCPs), generally, I say that I am at the end of my tether.  A lot of that is dealing with orgs like 2g.

Wife was very  difficult to budge from her sitting-room electric recliner chair all winter and spring and she has not vastly improved of late.  We finally went on a disability canal-boat holiday last month which. on the penultimate day, ended in an A&E visit + two days, for my wife.  .more here

I appreciate you may need to spread the requests etc around 2g.  If discussion is warranted, I can call in at 1530 on Weds 15 July.  Perhaps I could collect docs etc re the request at No. 1.  Ditto two folders in No. 4.

This paragraph is the most significant within normal expectations relating to interaction. You were sent a letter on 9 July but no action until I sent an email .  Assuming that you consider yourself HCPs, you have some explanation to make as to why you did not reply.

Would be pleased to communicate by email. 

C Contents 

1  Caree - three days in Worcs Royal Hospital including a request

2  Resources I am using

3  A manifestation of dementia?

4  OCD - 2011- AFH    -    a request

5  Age-appropriate aspects of interaction with disadvantaged adults

C1  Caree - three days in Worcs Royal Hospital 

C 1.1

Elsewhere on this site there is a hidden doc - Caree - three days in Worcs Royal Hospital (WRH).  It is addressed to our GP.  It begins thus:

WRH paperwork states admission 24 June. Caree admitted to WRH A&E on Tuesday 23 June and discharged from the assessment ward on Thursday 25.  When I arrived in A&E, triage had been done. That routine obviously included the “What year is it?” questions and Caree did badly enough to warrant WRH to declare delirium.   source

Later, WRH paperwork says:

6.2 The WRH ward admission routine repeated the “What year is it?” questions and I observed that Caree did very well. More recently,  Donapezil seems to be working.  

However:

1..6.5 Where OCD stops and dementia starts is beyond me. Caree is still obsessional about proportion of bedding between us, doors, fluff, and folding clothes and napkins. 

C1.2 What is state of play re memory clinic? CPN S H prescribed the memory pills in March (?) and will review six monthly.  Where does the Triangle fit into this?

The context of the quoted text can be seen here.

I am interested in maintaining caree's present level of communication etc as long as possible.  To that end, family ply her with photos, old letters and cards etc.  All the commonsense approaches are used.  

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. 

This paragraph is also highly significant within normal expectations relating to interaction. Assuming that you consider yourself an HCP, you have some explanation to make as to why you did not reply.

Update 14 Aug 

Via a third party "In my discussion with SH she has explained to me that she is unable to provide you with a copy of the tests that they undertake, she explained that they would not advise that your wife is tested regularly as this could cause her increased anxiety.  SH will be in touch with you to arrange a visit.  The frequency of these visits will be approximately 12 monthly.  source 12 iv here  My reply 12 v et seq. 

2  Resources I am using:

1. Booklets which R gave me at initial meeting.
2. Alzheimer's Research UK here   Includes many other resources.
3.  Alzheimer's Society here   Coping with memory loss here
4. Simple ways to help someone living with dementia (pdf) here .
5. About dementia
   Changed behaviours and dementia
   Looking after families and carers
   Caring for someone with dementia
   Residential care and dementia
   Information for people with dementia
   The environment and dementia
   Lewy body disease
   (Younger onset dementia)
   Tips to assist social engagement
   Other information                                     Oz source 

3  A manifestation of dementia?

Since 1978, I have played Flamenco guitar.  An international virtuoso played locally in mid-May.  I negotiated with caree to attend without her and with elder daughter and husband.  Caree was fine about the idea and a carer was arranged.  Caree has a history of sitting on grudges etc and saying nothing.  Little did anyone think that, as late as July, any negative outcome to the event would have emerged.

At 0408 or so on 6 July, the light came on and caree began saying things like "You didn't give me ..  you know .. the piece of paper.".  "What piece of paper?"  When you went to the um, um, you know."  "No. I don't know, what do you mean?"  

Eventually, I was accused of not giving her a programme for the Flamenco event.  She had waited all the way to her birthday on 5 July and not receiving it then was, to her, the last straw.  I kept calm and said there was no prog.  More rantings to 5 00 and then nothing all that day or since. (7 July)  I had 30 mins sleep before getting up at 6 00.  Caree didn't sleep and only snoozed in the afternoon.

C4  OCD - 2011- AFH   a request

My file should hold two plastic-comb-bound files I used with CB within CBT.  Please return them.

5   Age-appropriate aspects of interaction with disadvantaged  adults

Text deleted until normal interaction with 2g is restored.

Update 28 July

Text deleted until normal interaction with 2g is restored.

 BWs

AFH

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