Not such a merry christmas!

Chris

Registered User
May 20, 2003
243
Consultants home visits

Hello Jo

YES - hosptial staff - consultants, Psychiatrists - whoever - can do a home visit - in the persons own home (parents of a friend mine had one recently and a Social Worker wnet at the same time. this enabled the Consultant to talk to the carer alone for a short time.) or at a Care Home (this happened with my Mum when things got out of hand - it resulted in Mum moving to a nursing home. )
 

Jo T

Registered User
Dec 27, 2004
5
Chichester
Thanks everybody for your replies, they were very comforting and informative.

Well the latest is that my sister and I paid a visit to mums GP a couple of weeks ago and have been reassured that she is totally on the ball and appears to know mum and Tony very well. she confirmed that mum is definately suffering from dementia, and that all the social services had her registered so that as soon as Tony needs help they can step in. she said that while mum is as good as she is it would be difficult to offer any respite care as neither mum or Tony would accept it.

We have the added complication in that mum has a prolapsed uterus which she should have had dealt with years ago but she never did (stupid woman!!). The GP is unwilling to let mum have the necessary operation at the moment as she fears that the anaesthetic could accelerate mums condition and that she would come out of the hospital with much severer dementia than she has at the moment.

Anyway I explained that I felt that in the last year that mums condition had deteriorated so she is going to write to the specialist that mum saw before and ask for her to be reviewed, with a view to getting her prescibed Aricept. However she did warn us that there was only one person in the whole of Bucks who has had it prescribed and that is because they had moved from Southampton and so it was an on-going prescription. I am assuming that this reluctance to prescribe it is a cost thing?? would we be able to pay to get it privately if the NHS is not forthcoming??

All the best

Jo
 

Kriss

Registered User
May 20, 2004
513
Shropshire
Hi Jo

you mentioned your Mum had a prolapsed uterus and the fix involves a general anaesthetic. Aunt had the problem just before Christmas (she had suffered a few years past and had a ring fitted and then removed) but the prolapse was so severe they decided to fit another ring. It didn't involve an anaesthetic and she seemingly coped very well.

The down side is that the incontinence is now much worse.

I am interested in the opinion that anaesthetic could worsen her condition as Aunt is faced with having her remaining teeth removed this week and is to have a general. No mention has been made to me of any risks apart from the usual that are associated with a ga.

Does anyone else have any knowledge on these lines?

Kriss
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Hi Kriss and Jo, can only speak from my experience with my Mum here, she went down hill very rapidly following an operation using anasthetic for a badly broken hip and thigh bone. But she was under a long time. Love She. XX
 

Chris

Registered User
May 20, 2003
243
Hello

My Mum had 3 leg/hip operations - pin to start with then a 'half hip op to deal with the usual neck of femur fracture then a year or so later another half hip on hte other side for another neck of femur fracture - all following falls in the care home.

Mum was 82/3 at time of ops and recovered very well considering - her dementia was quite advanced at that time (late middle stage - not able to find any words , eating with a spoon, its difficult to describe where someone is in their dementia).

Mum didnt deteriorate any quicker I dont think after the ops - I'm sure general anaesthetics affect us all differently and the time someone is 'under' could be a significnat factor as someone else has said.

I wonder if there are different types of aneathetic ? maybe the choice of these is important with people dementia???? Out of our hands but a good question to ask researchers maybe??

Hope all goes well for you.
 
C

Chesca

Guest
Dear Jo

Re the Aricept, you should be able to obtain this through a private prescription but it is an outrage if you have to go down this road. If this turns out to be the case try writing to your MP, local Councillor, everybody and anybody. I thought this lottery had stopped. If they can afford all kinds of anti smoking paraphernalia and clinics for bloody idiots like me who smoke they should be made to provide for the more vulnerable and their carers to enhance quality of life - a human right.

Re the anaesthetic, I too have heard of people with dementia undergoing surgery and deteriorating following the op, a friend of mine was advised by the surgeon that this could be the case following his Mum's op and it proved to be the case. I don't know if there is any information on AS site about this but will have a root around.

Anybody out there know anything about this?

Good luck with the prescription and let's hope a little overdue improvement is on the horizon for you all.

Take care
Chesca
 

Chris

Registered User
May 20, 2003
243
Hello again

I dont wish to divert the discussion but sometimes when someone has dementia and they move house or go into hospital - it seems as if there is a marked deterioratoin in their all round condition - memory, thinking, ability to do things - just everything.

This may be so or may be that at home they were able to live very well despite their demenita & then when in hospital all their support system is gone & their true health status became apparent .

This especially happens in hospital - sometimes this is because at home their routines & familiarity with everything enabled them to cope & live much better. Hospital must be worrying if you cant remember things - the staff arent always around and when they are they look very busy all the time. I remember when Mum got back to the care home whe sank into the armchair & breathed such a huge, huge sigh & let out a strange sound of pure relief - I noticed how very quiet it was after all the constant bustle and alarms of a surgical ward. Once back into a routine and resettled either in own family home or even in a new one - there can be a return to how they were or at least a lot of improvement as to how they were in hospital.

Stress of beng ill & in hospital and not being able to learn or remember new things has contributed to any noticeable deterioration of course. In some places there are Intermediate Care wards or special areas in a care home to give close care to patients when they are well enough to leave hospital but not well enough to go home. These rehabilitation or reablement places are a step between hospital and home and give people a chance to relax and see if they can live back in thier own home rather than needing to make a permanent move into a care home.

More & more Intermediate Care for people with dementia is being set up - but not everywhere yet. Sometimes of course it is probably most appropriate if someone goes directly to a care home from hospital if they are very poorly.

If there is no specialised Intermediate Care for people who have dementia (as well as other health problems perhaps) - we need to ask for it - if we create the expectation of having this - and show our knowledge that some areas in UK hav it & it is working well - ie evidence - then health authoriites will find it harder and harder not to provide it. (Thats the theory !!).

But when you hear even the very well established drugs for dementia are not being prescribed you wonder just what is needed to improve things.

Also I have heard that the older you are the more likely it is that anaesthetics in general may adversely affect you - maybe slightly or more so - and the effect may or maynot wear off. Thsi happens to us all unfortunately - but a low inciidence I think . Havent heard that demneita makes this worse. A relative of mine had an op at age 75 ish and says her memory has never been quite the same since - but that could just be coiincidence. [She doesnt have any sign of dementia some 10 years after. ]

Basically - after all that - I'd say - statistically prob - hopefully - no need to worry too much. but - I'm only a layperson - and when an op is needed .......... Best Wishes.
 
C

Chesca

Guest
Chris, isn't a lot of the disorientation already a part of dementia-related illness? In separate, non-related professional consultations - mainly concerning my own situation - the common consensus was that to relocate Mum, wheresoever (eg. a trip to my sister's home some 350 miles with family transporting; a visit to the doctor; supermarket) would result in trauma for her and any such relocation would require a time of settlement. Certainly true in the event.

We, as a family, have been lucky in that physically there has been no major league surgery, my beloved elderlies have been fortunate to so far escape much of that suffering. But nevertheless there seems to be some area of concern expressed, by surgeons, anaethestists and nursing carers, to various people at times of their experience where surgery has taken place.

It would be interesting to hear if there is any medical, official opinion on this.

Chesca
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Chesca
I think what has been written is all obvious stuff to most of us carers.
Any deviation from the usual routine is known to cause the memory to become worse and the sufferer to become more confused,whether it be going into hospital,going on holiday,work being done in the house etc etc.
Anaesthetics react in different ways with different people,I have not seen any evidence of adverse reactions with AD sufferers.
Perhaps we should ask Nada is she aware of anything written on the subject.
Regards
Norman
Jo
Aricept is available on private prescription,we paid for it before the NICE committee made it available on the NHS.
As Chesca says it is a disgrace to be forced to pay,bang the drum and make a noise before you pay.
Good luck
Norman
 
C

Chesca

Guest
Norm, I was hoping you'd say that. Nada may have something in her magic bag of tricks, she normally does.

It must be an awful worry hearing one thing then the other when facing surgery for your loved ones.

Chesca

p.s. Think you're everybody just becuaes you can spell, anaewthististciast, drugs. Bet you can spell becaues, too!
 

Chris

Registered User
May 20, 2003
243
Originally posted by Chesca

It would be interesting to hear if there is any medical, official opinion on this.

Chesca
Hi Chesca If anyone wants to , it is possible to look at this - from where you are - there is a searchable database of dementia research on this very website - www.alzheimers.org.uk
Go to the Home Page then click on
ABOUT DEMENTIA/RESEARCH/LIBRARY /SEARCH LIBRARY DATABASE

Basically not enough research done yet - there are never any easy answers sadly.

BUT first - I'm the world's worst for wanting to find out for myself - its the result of being let down by health & social care professionals so much & having to watch so much unnecessary suffering - so I dont apologise - but also know that a little knowledge can be a dangerous thing and sometimes it helps to trust 'them' - its a knife edge we tread.
I sometmes feel whatever I do is wrong - speak out - its wrong - stay silent / do nothing - & feel the guilt. I left Mums last days to 'them' - it still haunts me.

Using anaesthetic as the Keyword, 2 references came up - I've copied here to save you time (but may be in trouble with Nada again for doing that !!!! - copyright you know !! but it is within a website - 'our' website - I'll cower by the computer !!).

"Your library search has found 2 records

Anaesthesia and the older surgical patient: something old, something new, something borrowed
Crowe, Suzanne
Age and Ageing Vol 33 (1) pp 4-5
2004
The author discusses the issues concerning anaesthetists about the care of the older patient after intensive surgery. Pre-operative assessment would have to broaden to encompass issues such as mental state, ability to consent, medications on discharge, nutrition and mobility. The author calls for the appointment of lead clinicians within anaesthetic departments of act as an impetus for change.
Library number
8970
Location
Journals held in library in title order.


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


Postoperative confusion in the elderly
Whitaker, JJ
International Journal of Geriatric Psychiatry Vol 4 (6) pp 321-6
1989
With advancing age, postoperative confusion is an increasingly important problem. Its aetiology is complex & multifactorial & includes surgical factors, anaesthetic factors, preexisting medical, psychiatric or psychological problems & postoperative complications. It often prolongs hospital stay & although mental function recovers in the majority of cases, it may be followed by permanent mental impairment. Postoperative confusion may interfere with the management of the original surgical problem & it occurs in a setting where interest & expertise in its management are low. There is scope for improved recognition, treatment & prevention of postoperative confusion. More work needs to be done to evaluate the effect of surgery & anaesthesia on mental function, especially in the very elderly.
Library number
993
Location
Journals held in library in title order.
This search is from the Alzheimer's Society library. Alzheimer's Society, Gordon House, 10 Greencoat Place, London SW1P 1PH Tel 020 7306 0606 Registered Charity No. 296645, Company Limited by Guarantee, Registered in England No. 2115499
 

Chris

Registered User
May 20, 2003
243
Forgot to add - from Library page -

Photocopy requests
If you cannot obtain references locally the librarian can provide copies of articles subject to the Copyright, Design and Patents Act, 1988. There is a charge for this service.
Contact the librarian for details.
Email library@alzheimers.org.uk
Please complete a copyright form if you know the references you require.
 
C

Chesca

Guest
Chris! Think I'm going to start calling you the ferret! You are quite extraordinary and thanks for that, on our part. Do you happen to know where I could buy an 18th century silver grapefruit spoon or do you just happen to have one in the kitchen drawer? You're marvellous!

Apart from looking out for us, how are you struggling through? Still torturing yourself given a little comment you made in your post? Hope not, I don't think anybody could have loved or done any more than you did.

Thinking of you, digger
Chesca
xxx
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Dear Chris, (the ferret) just wanted to second what Chesca said, no one could have done any more, you are a star! Love She. XX
 
C

Chesca

Guest
So that's where you are! Have been sending you PMs in response to yours, about 426,000, but your're mailbox was full. Time you did some housekeeping madam, never mind chasing around after pink bucks!

Chesca
 

Boatgirl

Registered User
Jan 23, 2005
3
Beds
Just to add, Mum needed a hip operation and the consultant referred her to a neurologist because he suspected "memory problems". Brain scan and neurologist confirmed the worst, consultant then refused to operate because of possible effects of anaethesia on AD sufferer. I decided to find another consultant to give a second opinion. Hard work but eventually she had the hip replacements. Like others on TP I also have had a lack of confidence in what I am being told by professionals and try to find out more for myself, my own research at least provided me with some ammo.
Aricept was another case in point. Having originally found it was not offered in our area, I eventually broke through by managing to get Mum on a local drugs trial. It was nerve-racking because at one point there was a possibility that funding was going to be withdrawn. I did try to pursue the private option in the meantime. I was told that patients would require careful monitoring and this would add significantly to the costs over the basic drugs. I didn't have to put this to the test.
Pursuing things to great lengths unfortunately seems to be the only way.
Good luck in your endeavours.
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
As 'Boatgirl' says: Pursuing things to great lengths seems to be the only way.

Lionel saw the consultant first week in Jan. He suspects mini strokes etc and said he would order a C.T. scan through our own doctor)

Doctor rang on Wed. so we booked appointment. Upshot was he did not think he could order a scan, because of PCT costs.
I was horrified, and said we would pay ourselves. Doctor started to make placating noises and has promised to push things forward.

I am so cross because they assume everything thesedays is down to A.D...

Connie.
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Update, The consultnt rang yesterday at 5.50. Surprise, he said therewas a mix up and the scan should have been ordered from the hospital. (Surprise - except I saw the letter and it was signed by said consultant. It is all down to funding)

However, he has agreed to sign for : a C.T.scan, an MIR scan, and an EEG.

Perhaps this was because I had begun to make loud NOISES. Should not be driven to this.. Regards to all, connie
 
B

bjthink

Guest
connie said:
Update,

Perhaps this was because I had begun to make loud NOISES. Should not be driven to this.. Regards to all, connie
Connie - let's all SHOUT!!!!!
This under-the-carpet has been going on for far too long for those of us with issues as carers re dementia.
Let's make our voices heard.
Those we care for deserve our screams of anger on their, and our, behalf.
Can we please get together and scream in unison?
I'm up for it.
Anyone else?