An exploration of the UK unpaid carer's world

Caree - three days in Worcs Royal Hospital (WRH)   hidden page 3 to 5

Update 10 Aug 2015  A lot of this page is now out of date.  Of possible use for reference.

Thank you Sharon for your visit and advice.   Holidays page here.

Page created 27 June and latest addition 2 July.   

R = elder of two daughters      L = main carer    S = weekend carer

Dear GP

Blue text upates after GP phoned R whose text is in red after that. Green text by AFH after.

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. She waited alone in A&E for over two hours as I had to retrieve my car. 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. It then pushed her into a crowded waiting room to be forgotten. No offer of a drink or WC. - 
Thanks to Dr P re advice earlier on Thursday.

1 Our holiday

2 Laxatives

3  Nutrition

4 DNs

5 Fluid 

6  Caree today

7 The informal carer

8 The immediate future

Our holiday

1.1 Earlier emails set out the minor history of our recent canal-boat holiday. Caree reported pain-level 10 in right leg which led to a 0300 visit from night-duty GP - Dr K from Birmingham.
 He prescribed Codeine Phosphate 30 mg which may well be the prime cause of the hospital visit.  UTI is the cause.

1.2 WRH is mistaken re this medication per my notes on the Page 2 attachment. Caree was taking the Co-codamol 8/500 soluble tablets and Dr K stopped them.  They weren't causing the constipation and delirium as stated by WRH. It was likely to have been the Codeine Phosphate 30 mg but I can only analyse the most recent changes of variables.
 UTI is the cause

2 Laxatives

WRH has given Senna.
 Dr P suggested the Laxido we already have.  Like Fybogel, Caree doesn’t get on with powders. She has been having Dioctyl since WRH and we await your advice. Give her Dioctyl Dr L said Docusate pills He renewed Dioctyl which says Docusate Sodium under that title

To discuss pills with L Weds 1 July. . I have forgotten Dioctyl on more than one day. The topic is on S’s clipboard to discuss with L so that S can remind me at weekends.

Thurs 2 July I had given one pill for three days with no reported effect. On Weds, gave her two. Last night soon after midnight, heavy attack and much cleaning.

3 Nutrition

3.1 When you arranged for Caree to be weighed across the road (c April?), I thought you were also contacting the dieticians. Did in April but they were snowed under. With such drastic weight loss post-hospital, I had hoped to hear from LS     will do    or etc. WRH supplied Caree with a can of Nutilis powder which is proving useful but not in excess and will provide nutrition v the cardboard granules I use to make an endless supply of gravy for her. Other confessions en route. ie I use tinned steak/mince far too often. Carers have daily been peeling potatoes for the last 6 weeks and I mash them fresh each day. Not done lately due to other priorities.

Thurs 2 July – L returns to the routine.  Fresh potatoes peeled each day.

I shave broccoli and cook the shavings for Caree, say, 3 times a week. Cauli less liked. She’s very fond of tinned French beans.

Many more ideas needed. I eat 5 or so cans of sardines a week for convenience as much as anything else.

3.2 WRH page 1 indicates low nutritional score. 

4 DNs

4.1 Would it make sense to advise the DNs re the enema aspects? No – must be front-end management.  A lot came out.  They could check monthly (?). No. I had asked for a visit last Saturday. Senior DN said she’d wait to hear from you. The pressure sores were of concern but all right on inspection.

4.2 I reported severe shoulder pain (broken collar-bone c 2011) arising from pulling Caree forward in bed etc. A belt is due.

5 Fluid

Waterlow = 14.  Would it make sense to check sodium level?  Done always as part of hospital admission blood test. T is not sodium-low. Before the weather improved, Caree was drinking water in vast amounts. Even more now, of course.  (Her file will show a sodium problem c 2003.) 

6  Caree today

6.1 If needed, Caree will come in to see you.  Currently (Monday 29th June) she is in good spirit and coping with her general condition. However, the immobility aspects and resultant pain plus the residual pain produce another story.

Should Caree be receiving physio? New garments? Home exercise machine? None

There is a Community physio – M – much under pressure – referral made

Also pain management clinic? No as requires sitting in a room 3 hrs a week for 8 weeks, not meant for mechanically-caused pain like T’s. Also requires good memory for all the exercises. Will it offer TENs? No – GP doesn’t reckon much re both.

6.2 The WRH ward admission routine repeated the “What year is it?” questions and I observed that Caree did very well. Donapezil seems to be working. Wiki tells me that Common side effects include gastrointestinal upset. Might it be a contributory factor elsewhere? GP commented = yes.

6.3 Caree is up four time most nights. Dr K had moved the Fuorosamide to mid-morning. I said you’d have had good reason for 4pm but he said try the new time. Go back to 4pm - - - however, the last two nights have been better so will keep to mid-morning for the while. Could be better cos UTI is over.

6.4 At least one of the four times is due to Pain Level 10 and I give Paracetamol capsules and spread later ones over five hour gaps.

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. This contradicts 6.2, doesn’t it. To discuss.

6.6 What is state of play re memory clinic? CPN S H prescribed the memory pills in March (?) and will review six monthly.

6.7 Caree is permanently in low pallor. Nothing to worry about as had blood count done in hospital. Not high priority.

7 The informal carer GP none of these are medical issues so GP cannot address them.

7.1 The previous version (by email) of this doc omitted comment on my situation.

7.2 All this has left me drained physically. Although our holiday included Caree’s main carer (who continued to be exceptional), canal-boats are off the holiday list. There is so much extra involved.

7.3 I have had no contact at all with Herefordshire Carer Support since September last and felt dumped then and still feel so.

7.4 X of Adult Wellbeing hadn’t answered a string of my emails. Since she was my only real support within carer provision overall, I felt doubly dumped. I met her on Monday 29th June.  More at 4c and 5b here.

7.5 My five hours respite is spent in supermarkets etc and B&Q etc. I need to be with people.

7.6 The family shared holiday snaps yesterday during which I suffered visual migraine (last time 15 years ago).

7.7  My fatigue etc levels rise and there is no prospect of change.

7.8  From 4.3 Like everything else across the board, always need to chase.

Have been talking to a charity about one-to-one sessions. Over six weeks, plenty of emails.  Sent one two days ago – what's happening? Reply – What is it that you want?  Finally, 2 July, hear that 1 -1 starts next week.  "With only two part time staff to cover the whole of Herefordshire it is  juggling role." All is forgiven!   Back to 1.3 issues  here.

Could TP please note that 7.3 is the most burning issue and I hope to find someone to talk to the director about prejudice.  I was very much involved with the local group and set up the website here.  

 8 The immediate future

Ideally, you would discuss matters with R and determine the next steps. She and I can come in as needed for discussion re caree/carer needs?

Thanks and BWs

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