Question? Information Pack

[PatH]

I was asked the question today ' If there had been a Carers Information Pack available when my husband was first diagnosed what would I have wanted to know and how much '
There was literally no information available and certainly no one to talk to and that was 12 years ago.
I would however love to know what you all feel and what information should be available .Do you feel that we should be made more aware of the progression of the disease so that its not such a shock or should that information only be available as the disease progresses.
Pat

 

[marlene]

hi pat..in my own experience i think we should have all the information up front. we hadnt got a clue what was going on with my mum ( different stages ) .. i kept taking her back to the consultant to be told its all part of the progress, which no one had bothered to tell us about..so for me the more info the better.. x

 

[Skye]

Hi Pat

I'd go for all the information upfront too. I knew nothing when John was diagnosed, and for the first six years I floundered along, getting so much wrong.

Then I found TP, and WOW! I think all carers should be made aware of it immediately on diagnosis. There's more information and help here than I've found anywhere else, not to mention the support, which is invaluable.

 

[KenC]

Hi Pat,

We have a brilliant branch up in County Durham, where everyone who comes to us is given an information pack containing all the required services in the area. The branch also runs frequent Carers group meetings along side a Domicillary care group, which offers all the information available to those who need it. If anything else is requested then the manager goes out of her way to find it if she can. This appears to be one of the few branches operating like this which is a great pity in a country like ours.
On the other side we cater for a day centre for people with Dementia along side a discussion group which we set up last year and is starting to thrive.
We just have to hope that one day some one will provide all the information and support services that carers and people with Dementia need, but I fear that may be in the future.

Best Wishes

Ken

 

[Lucille]

Hello Pat

I agree that a Carers Information Pack would be a brilliant idea. I've gleaned loads of information from TP which has been really helpful, but to start with when I didn't know it was here, I was lost. I'm surprised no-one has thought of putting something together.

 

[Michael E]

I was so lucky to have found TP when Monique was first diagnosed... from avid reading of all the posts from people of with 'loved ones' at all the various stages, together with advice and questions replied to, I have been able to put together from the start a framework of knowledge... I sort of now know what to expect, I know more or less what the future holds and when the really bad times came along I was not surprised - rather prepared.. It was TP that did this.

Maybe somebody here should lay out a programme of what happens - what is going to happen to the people we look after. Talk about the really bad times and the seemingly impossible problems that will arise.. I found that the knowledge of the progression of this horrid sickness made it far far easier to deal with..

Clearly there is a need for some sort of Alzheimer's Calendar that lays out the future.. It is said that every case is different - true - but there appears to be a collection of 'happenings' that are remarkably similar in the basic course of the progression towards care homes.

 

[Tender Face]

Fascinating question Pat … in both personal and professional experience it is not so much what and how much information is disseminated at any time (and especially at vulnerable times) but the manner in which it is done …..

To be ‘presented’ with a ‘pack’ of information ‘up-front’ would have probably traumatised me more than allowing mum’s diagnosis to sink in slowly ….. (not that I’d have probably taken it in) …… to have had a suggested diagnosis and then … this is what is likely to follow ….. oh dear, I tremble at the thought …… but was the worst fear the unknown because I had no real idea of what was likely??????

Yes, I absolutely agree some kind of information about potential support should be immediately available to at least a primary carer on diagnosis (if not before) ….. but the phrase ‘too much information’ springs to mind…… Oh to live in that Utopian world where that resource ‘pack’ was available through ‘human contact’ - perhaps by a support worker (from various sources) being immediately allocated …… understanding the needs of both sufferer and carer(s) and supporting them with information as and when able to accept it ……… without trauma of what the future may hold being forced upon them …… whilst the realities of provisions needing to be made are not lost …….

The beauty of a resource like TP is that people can ‘dip in’ as and when they feel able to confront certain issues and pick and choose what they do or do not read ……… without being confronted with some of the potential realities we (well, me!) at times deny to save our own sanity …… and other times feel brave enough to face and try to plan what little we can for the seemingly unplannable …..

Then, of course, we have to recognise - for many different reasons … many people who could benefit so much from TP or similar resources are unable to access it …….. and what help is there for them?

Sorry - just thoughts ...

Love, Karen, x

 

[KenC]

Hi all,
While the branch has a pack which is issued to new members of the society, they only do it when the consultant has given the diagnosis, they are then sent to an open session which is based in the hospital. This is run by the Doctors, memory nurses and other support staff including Occupational Therapists, as well as our Branch manager who talks to each new patient and also gives advise where needed. The pack is just there to help with things like emergency phone numbers for the hospital unit if required and other services that are run by the branch. Each person and their carers are given all the facts by the hospital consultant on diagnosis and are asked if they have any questions, about care and support.
People have said that the system is second to none, a system where the patient is treated with respect unlike some hospitals I have come across in the past.
What is more it is also possible to ring this hospital unit if you have a querie about someone who is ill, which is not standard practice in England.
Having said that we all have different ideas about how much information we want, and some people prefer not to know.
But that is were Talking Point comes in because we can get advice 24 hours a day from the people who are in the know(The Carers) and it does not come any better than that.

Best Wishes
Ken

 

[Cate]

It wasn't until I started reading TP did I have any level of understanding of AD, and at that stage I had no clue either about what sorts of questions to ask of the doctors.

I would have so appreciated in the early stages of having a 'named' contact to give me advice on services available, and not the bland 'what do you need', at that stage I had no flipping idea.

To have had someone explain to me about things like being accused ‘stealing’ whenever something was misplaced. That when mum said she had taken her medication, don’t take this on face value etc.,

In short I would have appreciated what services could be make available to us, and what to expect along the way in terms of changes in behaviour, and how to handle this.

Without TP I would have sunk

Much appreciated all for your advice along the way.

Cate

 

[Lonestray]

Pat,
When my wife was first diagnosed with Az I was surprised to discover how disjointed the information I was given. It appeared all the information available about patients could in this day and age have been collated on computers to outline pictures of AD. It could include ages, sex, relationships, each of the stages, dealing with stages, eg "Trying to put me away", 'Wanting to go home', aggression, eating, drinking etc etc. Information could be gained by case studies.

Learning by trial and error is not cost effective to the NHS as it causes damage to both patient and carer.
At our very first meeting the Psychologist when asked why he was working with Alz patients he told me his MIL had suffered from it and when it came to treatment it was at the bottom of the heap.

Now twelve years on, no one wants to know anything about my wife's progress we may as well not exist. That's OK I know it's best out of sight and mind 'he's doing a good job'.

At last I'll admit it's not possible to care for anyone alone once they reach the final stages nor would I recommend it.
I'm just crazy, in love, the last full day off I had was six years ago. I'm also fascinated by the challenges Alz presents in my caring roll. Padraig