An exploration of the UK unpaid carer's world

Notes to GP1 ...            hidden pages                      medication list here    


.. .. as explained on 24 Sept.  He is the senior partner at the surgery.                                   


These notes were written in October 2013. There was no real result hence our recent change to GP2 who is working his way through the situation.  

At the end, there is a red line and notes to GP2 have been added. 

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Dear GP1 + Yours etc  handwritten.                                    

These notes have been written by family members to aid the process of medical decision-making.  The “I” or “me” in this account is TDH's husband.   

The notes are grouped as follows in order for you to assess priorities and look further down for more information:

 

  1. Childhood: brought up to avoid causing problems for other people.
  2. Appointment lists: TDH arrives with five points but two max are raised.
  3. Night-time: TDH is awake for a long time.  Later sleep disturbed by frequent WC visits.
  4. The day: in bed until 1230, obsessive bathroom activity until 1430.  Watches TV, often slumbers until 2130. 
  5. Meals: problem with spacing them out.  

  6. Other factors

         6a  General anxiety v doing nothing.  In denial.

               6b  Won't go out - if an appointment is before 1500, I try to change it.

               6c  Abdication – doesn’t participate in simple household tasks such as a

                     shopping list.

               6d  The dietician –1 lb per week weight-loss.  Is this serious?

               6e  Good-looks and self respect – more important than keeping warm.

               6f   My respite time - tears and tantrums.

       7      Where do we go from here? 

                7a    A written reply is not anticipated or expected. 

                7b    TDH’s records

                7c   Is TDH suffering from depression? 

                7d   All family members to discuss the detail of her ailments.

                7e   Always accompanied by a family member

                7f    Request for early morning visit

                7g    Request for double-length appointment

 

                All items are important.

           In particular:

                   7f   Request for early morning visit

                               7g  Double appointment in the afternoon/early evening      

 

1   Childhood 

1a

Any medic in front of TDH should be aware that she was brought up to minimise inconvenience for everyone she is in contact with.  She had a childhood dominated by an archetypal stepmother.  Her mother died when she was eight and she was sent to a clergy-daughters boarding school. 

1b

There were five children and TDH was the last.  A few years older than her was Helen, the step-mother favourite.  She would sit in the WC and read books while the nine-year old TDH was made to do housework etc.  The latter was often sent into the garden only to return and find all doors locked.  Their father was Director of Education in Dorset and wrote books on astronomy.  He was never in touch with the family in the sense of knowing about situations described here.

 

2   Lists

Throughout our time, when TDH is/was due for a GP appointment, we would establish what needs to be discussed.  A list of five points during our discussion is always reduced to, at best two during the consultation.  From that it can be seen that a double appointment is the ideal. The feedback discussion after is dominated by "But there wasn't time."

 

3 Night-time 

3a

We can now turn to the present and start with night-time.  On average, we reach bed at 2300.  TDH takes an hour from turning the TV off.  She never sleeps until c 0200.  That will be later if the good-night routine of cuddle on the sofa, at bedside etc has not been followed to the letter. She is hypersensitive to deviation from routine.  While trying to sleep, she will ruminate on the day's events, who said what to whom etc. 

3b

TDH always takes from 20 to 30 minutes in the WC.  At night add 10 minutes.  She is up at least four times and often five times every night.    

I have suggested on more than one occasion that TDH uses a commode in the bedroom at night.  She has always refused. 

 

3c

She often comments on her various ailments and pains in her left shoulder predominate.  

 

3d

The Ensure drinks she has been prescribed give rise to a foaming sensation in her mouth day and night.   

 

4  The day 

4a

Progressing to reveille, I get up c 0800.  TDH is left to sleep until 0930. She may wake c 0900.   I bring fruit juice, teapots etc, porridge and then fruit with yoghurt.  TDH is deeply religious and reads her Bible a long time each morning.  Add dealing with tablets, and it is well past 1230 before she reaches the bathroom.

 

4b

TDH indulges in obsessive washing.  She takes about two hours to wash every morning from head to toe and has done for at least four decades.  We arrived in Ross in 2004.  She couldn’t use the bath so I installed a shower.  She has used it about three times and uses the excuse of the hot water not being consistent.   

Update 19 Sept

A DN visit two months ago led to her barging into the bathroom while TDH was washing.  TDH was not amused.  However, subsequent discussion  led to a paid carer helping TDH to shower.  It had no effect and she persists in not using the shower.  There's nothing a GP could do about this situation.  Recording this situation helps the reader understand it in this context.

 

4c

She emerges from the bathroom any time from 1400 to 1600.  Lunch, on average, is at 1500.  I prefer 1300.

 

4d

TDH spends the rest of the average day sitting in her electric disability chair.  She watches TV most of the time.  I bring tea for us both c 1630 and the evening meal between 1830 and 1900.  We watch TV until c 2130.

 

 

5   Meals 

5a

An important dimension within the complex diverticulum situation as it affects TDH is spacing out the meals.  It has been said that she appears for meals late in the day.  Eating while sitting in the bathroom isn't a choice.  When the main meal of the day is put in front of her, unless it is fairly substantial, she wants more.  The process takes an hour.  It ends c 1530.  There's a break until cup of tea and biscuit c 1700.  The bread and marg meal starts c 1830 and, again takes an hour.  

 

5b

I try to track the foaming mucous sensation problem mentioned earlier.   There's no real correlation.

 

6  Other factors

 

There are other conditions – other factors  ( I won't call them symptoms) which TDH experiences.  They are probably associated with carees across the board.  

 

         6a  General anxiety v doing nothing.  In denial.   

               6b  Won't go out - if an appointment is before 1500, I try to change it. 

              

               6c  Abdication – doesn’t participate in simple tasks.  

                

                Similar comment re washing.  I'd put it into the machine and hang it out.  Until 2013, sitting down,                       TDH would separate it all and put socks into pairs etc.  


                

 

               6d  The dietician –1 lb per week weight-loss.  Is this serious?

               6e  Good-looks and self respect – more important than keeping warm.

               6f   My respite time - tears and tantrums.   

 

6a  General anxiety v doing nothing 

In denial

All family members have researched TDH’s illnesses online.  While watching TV, eating her meals, she has a mass of papers etc beside her.  These include A4 sheets  on her illnesses.  She has read them but doesn’t feel prompted to come to the surgery.  We maintain pressure on her to do something but it is very difficult. Much better now. 

 

At first we thought a main probem could be bowel cancer but it is it diverticulitis causing bowel trouble?

 

TDH is complacent over illnesses and thinks there is no help to relieve symptoms even though she has the info to raise her understanding.

This letter aims to end the continual process of pleading with her to talk to you.

 

 

 

 

 

6b  Won't go out

 

As winter nears, the prospect of her leaving the house diminishes.  If an appointment is before 1500, it is my role to try to change it.   

 

 

Continued at 7g.

 

 

6c  Abdication

 

TDH gave up the role of house organiser / housewife many years ago.  Rarely does she participate in simple tasks such as producing a shopping list.   

 

 

That said, she arrives, but rarely,  in the kitchen complaining that the surfaces are harbouring germs.  

 

 

 

6d  The dietician

 

The dietician is Laura Samuel who weighed TDH on 25 October.  She was 9 st 9lbs.  On 30 August she was 10st 5lbs.  LS remarked that = 1 lb per week loss.  Cause?  Is this serious?

 

The Ensure drinks she has been prescribed give rise to a foaming sensation in her mouth day and night. 

Rarely used now.

 

 

 

6e  Good-looks and self respect

 

TDH went to the WC c 0300 one night.  Came back and said it was freezing.  The heating had been on from 0530  .  I asked if she had used the wall-heater.  “No ‘cos it makes my hair go frizzy.”

 

 

 

 

6e  My respite time

 

There ought to be a heading – Tears and Tantrums.  This aspect comes to a head when my respite time looms.  It is each Wednesday from 1330 to 1830.  Occasionally, I extend it.  On Monday and Tuesday of any week, there are tears and tantrums. 

 

7   Where do we go from here?

 

7a    A written reply is not anticipated or expected. 

7b    TDH’s records

7c   Is TDH suffering from depression?  

 

7d   All family members to discuss the detail of her ailments.

7e   Always accompanied by a family member

7f    Request for early morning visit

7g    Request for double-length appointment   

 

                All items are important.

           In particular:

                   7f   Request for early morning visit

                               7g  Double appointment in the afternoon/early evening      

 

 

 

7a   A written reply is not anticipated or expected.   

 

7b   TDH’s records

 

This document can be sent as an email if it is thought that TDH’s records would benefit.

 

7c Is TDH suffering from depression? 

 

TDH is complacent over illnesses and thinks there is no help to relieve symptoms even though she has the info to raise her understanding.   

 
 
She has severe pain in her left shoulder.

 
She has had a sore throat for months (no cold or flu symptoms).  Is this related to the

esophageal pouch and undigested food rotting in it?

 

 

7d  All family members to discuss the detail of her ailments.

 

The family requests that you recommend to TDH that she signs a document allowing all family members to discuss the detail of her ailments.  Done.

 

7e  Always accompanied by a family member

 

The family requests that you recommend to TDH that she is always accompanied by a family member when she consults you.  Done.

 

 7f   Request for early morning visit

 

There are tests to be carried out before TDH gets round to making an appointment.  Further to the “Going out “ problem at 6b.

 

We request that someone phones TDH to arrange an appointment at home before she takes in any food and drink.  Thank you for phoning two weeks ago.  You may have heard me in the background insisting that she talks to you about the tests.  It was very difficult.  This request now takes the situation forward.

 

7g

Trying to get her out of the house. 

 

 

 

7h   Double appointment in the afternoon/early evening

 

We request that a double appointment is agreed so that I can phone and make it.

 

If you prefer to discuss this document before the appointment is made, please advise a member of staff to contact me. 

 

 

 

 

 

With thanks from our daughters and me.

 

Best wishes.

 

A F H


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Note to GP2 in July


Innovative professional care

Internet searches have been carried and I have not seen anything referring to paid carers in attendance with carer and caree.  I receive five hours respite per week.  However, I hope to enjoy more time with TDH, not less.  If the extra help could include meal preparation for all three in the house at the time, my wife and I could enjoy a meal that I hadn’t prepared.  

The paid carer could also advise me about meals which suit her throat problem.  She could even prepare enough meals for two or three days.  Cooking and the mess I create are all a nightmare.  It isn't envisaged that one person could do everything since TDH's needs are broad.  For example, help sorting out her personal papers etc privately would be useful.

update 19 9 2014

Interaction with social workers in progress.   

CPN

As a further aspect of TDH's wellbeing, I hope a CPN can be advised of the situation.



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