An exploration of the UK unpaid carer's world

                                                                              a visiting specialist at the DMC

December 2016 session                                                                                          hidden page

Update 18 Jan

See 4,4

DC email 7 Jan 2017  here  - is there to help you decide my future as an aspie.  Will I receive a formal assessment?

Would prefer to send pages of that type via the practice manager - OK?

If you read this page (you ahve hard copy) red text which includes updates  is the most urgent.  Blus text less urgent.

Aim

To provide current info in reserve as required beyond what may be discussed within the session. To volunteer as a research subject.

Contents

1. Teresa
2. AFH
3. A list of brighter aspects of my outlook 
4. DMC
5. Notes on dementia
6. From Rachel

1   Teresa

1. Does she need Furosemide in cold weather?  Are paracetamols exclusively for pain relief? - 
2. 
   
3. Update 18 Jan - answered.  Am giving F at 3pm and not 4 as it may have contributed to fewer wet sheets.
4. 
   
5. Teresa is at her least energetic state to move from bed to commode at 3 and 4 etc in the morning and this is a regular situation.   
6. 
   
7. She is incontinent at night more frequently - once = 3/7, twice 2/7,  thrice 1/7.   7/7 disturbed nights  10 wets  5 pyjama and bedclothes changes a week     dire-rear 1/28
8. 
   
9. She is increasingly worried when I am not around. Current Citalopram enough?  Anything else?
10. Update 18 Jan - even worse.
11.  
12. When will her assessment take place?  You may have expected it would be done today.  Sorry.
13. 
    
14. Life for Teresa is TV a lot of the time.  She can watch the same episode of Cops or Heartbeat several times.  When the adverts are on, I am asked to get rid of them as she can't understand why they are there.  She becomes quite upset at times but cannot express why.
15. 
    
16. Two weeks ago, I put the phone down and said it was Jane.  "Who is Jane?"  I said who she is.  Teresa is rarely upset apart from TV adverts but on this occasion, she was angry.  "Why didn't you tell me you had a sister?"  That said, we enjoy life together.  Teresa can still do more than several normal things in life like saying please and thank you.
17.   
18. Christmas cards arrive and almost all relatives and friends have been forgotten. For some of the time, Teresa  can hold a fairly normal conversation and people may not realise she has dementia.  .  Teresa had a mini-stroke a month ago. The greatest shock of my life.  The DMC will include sessions of helping carers to be prepared for such events.
19. 
    
20. Where does OCD stop and dementia start?  Teresa spends ages putting a sock on a radiator. Toilet paper is carefully folded and all the jagged edges removed before use - ten sheets at one wipe, .  At least two wipes. 
21. Update 18 Jan - now too weak most of the time to wipe herself.  
22. 
    
23. She no longer goes to daycare near the firestation and Newent is streets ahead.  However, when they transfer Teresa to a normal wheelchair, she is pulled forward by them gripping her hands.  Her arthritis and neuro-problematic left arm suffer.  They say lifting from under arms is no longer permitted.  Letter?  I could supply a body-strap.
24. 
    
25. I continue to give her too much babyfood at lunch-times.

2   AFH

1. Have lost a lot of sleep over the lack of progress of the DMC.  DC has recently said it is because volunteers refuse to work with me.  However, I was kept in the dark and I finally issued the press release.  DC before the last MHG said "That's OK."  I wasn't asking her to approve it, however.  It sums up the situation.
2. 
   
3. After the service on 10 Dec, I was asked by a woman if I knew anything about the DMC project.  I replied "I am the prime mover." She may have read p 5 of Dec Connections Parish mag which gave detail of the DMC.  If so, at the time of the conversation, she knew more than I did then.  Nowhere in CC print am I given a mention.  Nothing in the previous issue mentioned on p 3.  Is it any wonder no one knows about my role? 
4. 
   
5. That was writtten on 11 Dec.  A week later, the facts were thrown at me.
6. 
   
7. Other relationship problems with the Dom-care company.  I relive aspects of early life with Teresa.  
8. 
   
9. Contrast that notion with pre-breavement worries.  Update 18 Jan - would like a referral please
10. 
    
11. Please advise the way forward.  Am optimistic if pills are on the menu.  Counselling is longer-term.
12. 
    
13. Am increasingly forgetful and use lists to ensure Teresa takes her pills, and dangle things round my neck.
14. 
    
15. OCD three years ago is obviously rampant but not as badly as then.  It is worsened by the fact that I have very few people to talk to and talk to the computer to work things out.  
16. 
    
17. Thank God I'm not religious.  DC and her church are the opposite of helping.  Perhaps me not singing the hymns or drinking the wine has been noticed and is a factor in the DMC situation.  I take Teresa to church to maximise her religious social life. However, it is another stress factor.  I sit there wondering why so many people are taken in by such nonsense and would prefer we were elsewhere.  
18. 
    
19. Bluntly - have you discussed any of this with DC?
20. 
    
21. We went to the Baptist Church last week for the carol services.  I told Melvin we were comfortable in our attendance.  It might be better than 2.17.
22. 
    
23. My recent A&E trip  Please explain the report.
24.  
25. I list brighter aspects of my outlook at No. 3.

3  A list of brighter aspects of my outlook

4   DMC 

4.1  Post-publicity situation on 19 Dec, five days after

4.2  Your patients 

1. Couple 1- D&S A - seen three weeks ago and almost three hours useful discussion.  Any feedback?
2. 
   
3. Couple 2 - E&G S - three weeks ago received leaflet, I phoned two weeks ago with reply that they could not attend DMC.  Today, she phoned to say she had read the publicity, discussed it with friends and now wants to attend.
4. 
   
5. Couple 3 - B&S W -where the daughter speaks.  She said two weeks ago she needs to take time off from work.

4.3  Other patients

You mentioned at the MHG meeting that you might seek patients wider afield.

4.4.8

Being optimistic, let's assume that in mid January, a dozen or so patients have agreed to attend.  Can the carers and possibly any independent carees assemble in the surgery meeting room?  I'll run the session after you have welcomed them - unless you want to stay and we work together.  To follow up in January with carees attending as well.

4.4   Publicity

Apart from Couple 1, the poor response is next.  I cannot see scope for a positive outcome before the MHG January meeting.  Knowing Ross and other failed projects, as you know, I have pushed Ross towards becoming a Dementia Friendly Community, at the last couple of meetings.

There has been another response to the publicity - only one helper and it was on 20 Dec.  She is a female hairdresser who has also worked in shops, will clean, and wants to learn how to help dementia sufferers.

source - 1 here     Your pool of some eighty patients is enough, isn't it?  

 - forgot that you need to confer with colleagues.  what news?

-----------------------------------

5  Notes on dementia

My recent A&E trip included a conversation with a Philippino nurse.  "Dementia is uncommon there." 

"The Philippines is described to be a nation of strong women, who directly and indirectly run the family unit, businesses, government agencies and haciendas." wiki  

More likely is the different lifestyle including more exercise than in UK, diet, different mix and levels of additives, less aluminium(? my use ), lower level of diesel fumes(? my use).

6   From Rachel

Everyone is saying how stressed you are and are concerned that it shouldn’t get any worse (both Caroline & Robin said so – saw them at a party on Sun).

2)    Therefore you need some pills like Citalopram to take the edge off it and enable you to cope with yourself better. These are not sleepy-making.

3)    Everyone is saying how much I am having to deal with your stress level and the fallout from it and how it makes you behave – so you need to do pills for my sake if no one else’s.

4)    You can tell him you’ve thrown all your toys out of the pram because you can’t be the Big Chief of the DMC and you don’t want to ‘just’ be a contributing participant.

5)    You have been asked to produce a 6 week plan of activities for the DMC from 1^st March, as the only person with the experience and knowledge to do so. I will help you with it if you like.

6)    You can tell him what Rev Deb said about your having put off/scared off volunteers and so she is having to get on with things as the Lead Body because she and others find it difficult to work with you. And that she is getting on with plenty – there will be training in Feb and opening on 1^st March (date for Dr L’s diary). And you will be taking mummy there each week for her benefit.

7)    Has he arranged your scan 5 weeks from your hospital visit ie beg of Dec? Or have you heard already.

8)    You now have no evening care because you have fallen out with or dislike or are inappropriate with too many of Ashfield’s staff so they now only have 3 who will work with you and they can only do mornings. Does he have any ideas for how you can avoid repeating this with the next care company and the next...?

9)    Have you got Aspergers (ie mild autism) because you don’t understand how other people can be different from you and may have different opinions?