A life in the day of.........................

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jenniferpa

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Jun 27, 2006
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I think it does depend very much on your area, but also, your diagnosis. In the 2 areas my mother was in you only got a CPN if you were referred by the Memory Clinic and you only got to go to the Memory Clinic if you were diagnosed with AD. Now it's possible that if you were diagnosed with one of the other "organic" brain disease you might also have been referred but definitely if all of your memory issues related to stroke damage you weren't referred. It was as if "well the damage is done, we can't help you now" and there's no medication for this. In fact, I don't know how accurate this is, but I was told by the only person who ever bother to consult with me on this very point (being referred to the memory clinic) that the only people who were referred were those for who medication might be an option, now or in the future.
 

BeckyJan

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Nov 28, 2005
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Derbyshire
Hello: Yes we were referred to the Memory Clinic via Consultant. David was assessed and eventually diagnosed with AD. Although he had MMSE tests, supposedly every 6 mths :)mad::mad:), we were not allocated a CPN because he did NOT have challenging behaviour. The SW or Care Coordinator did absolutely nothing :mad:.

We have since been allocated one - but this is cos the rehab team got involved during his hospital stay and their input has made a difference. The SW does telephone reviews :)mad: does anyone else have those?) and the CPN wants to do another review after 2 mths. So for me things are looking up.

So much seems to depend on the area and how difficult the case is.

Love Jan
 

Skye

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Aug 29, 2006
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SW Scotland
Hello: Yes we were referred to the Memory Clinic via Consultant. David was assessed and eventually diagnosed with AD. Although he had MMSE tests, supposedly every 6 mths :)mad::mad:), we were not allocated a CPN because he did NOT have challenging behaviour. The SW or Care Coordinator did absolutely nothing :mad:.

That's what happened to us -- though we didn't even have a care co-ordinator.

I'm fighting very hard to get it included in the guidelines that everyone has a care co-ordinator, with one phone number they can ring in an emergency. If we'd had that, I don't think John would be in the position he is now.

(I think I'm winning!):)
 

BeckyJan

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Nov 28, 2005
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Derbyshire
In an official Derbyshire Mental Health leaflet it outlines that we should all have a Care Co-ordinator. When I rang up the Consultant's office to find out who he/she was, she said the CPN. I then asked who was it? - we had not been allocated one!! (this was early on in our crisis state).

Now I assume its the Social Worker - but still not certain. The person we have does not do social work for us, but conducts these telephone reviews, nothing else.

I have never come across such an unco-ordinated system!

Love Jan
 

Jane.B

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Dec 7, 2007
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Rupert has had a cpn for over 30 years because of his schizophrenia, and the one he's got now is wonderful. When he was diagnosed with AD he didn't get sent to a memory clinic as he was already seeing a phychiatrist, and he refused to have a scan (no ones going to mess with my head) Whe it was realised that he couldn't be left alone, we got a SW and she organised the sitter service paid for by the SS as we'd not enough money, arranged for the occupational therepist to come and see about rails and things being put in the bathroom, hall etc. Then later a reviewing officer arranged for extra care in the shape of someone coming each day to help wash and dress him. Now that he's in hospital after a fall, the hospital SW has taken over, and we've got a meeting at the end of the month.
 

CYN

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Jan 4, 2008
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east sussex
We went to our G P he referred us to a Memory clinic and we were given a CPN this was before the MRI scan was done. the result of the scan showed mini strokes had occurred. we did not get a social worker until i asked for an assessment for myself. the result of having a SW was to get more help.

Cynthia.
 

Grannie G

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Apr 3, 2006
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Kent
Everyone has a different experience so it`s not surprising we don`t know what we are and are not entitled to. It`s all very confusing.
 

Margarita

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Feb 17, 2006
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london
Your right about that Sylvia.

Its like with the cancer drugs & post code lottery,as lest now with the post code lottery cancer drugs it moving on & they getting ride of it, Every on gets the same treatment with medication if required .( from what I am hearing in the news later )


I hope it happen on day in the future with AZ/ other Dementia with the treatment Services .
 

dab1630

Registered User
Feb 23, 2007
24
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Kent
At the moment there are far too many people, carers and cared fors, who are virtually invisible to the mental health treatment system as, for various dubious reasons, they do not have a care manager, CPN or possibly even the consultant psychiatrist who diagnosed them.

We have been fortunate to have had the services of an excellent CPN for the last year. In addition, the relatives group Sylvia has mentioned is run by an occupational therapist from the day care unit and is attended by various health professionals, giving an indirect access to what is on offer.

A recent innovation in our area is the Home Treatment Service (C,I & M as mentioned by Sylvia are part of this team) who are effectively a crisis resolution team. The idea is they will work with dementia sufferers and/or their carers very intensively for a number of weeks to prevent possible hospital admission. Unfortunately, to access them you need to be at least near a point of crisis if not past it.

If you do not have a care manager or CPN, the next best option to find out what your area may have to offer support wise is to contact your local Admiral Nurse
 

Skye

Registered User
Aug 29, 2006
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SW Scotland
If you do not have a care manager or CPN, the next best option to find out what your area may have to offer support wise is to contact your local Admiral Nurse

Good advice, Duncan -- if your area has Admiral nurses.

Ours doesn't!:(
 

dab1630

Registered User
Feb 23, 2007
24
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Kent
We have only had Admiral Nurses for a few months in this area. Unfortunately they are not as widespread as they need to be (there only about 50 countrywide).I realised how potentially useless my advice was about a millisecond after I posted it.

The duty answer if we need assistance is to contact our GP. In most cases the GP will refer you to the local mental health team, who we should have direct access to anyway!

Our local trust is currently reviewing the diagnostic and treatment procedures for dementia and I am one of two carers on their committee. I am intent on making it a rule that no one diagnosed with dementia is left with no direct access to dementia support services.
 

Skye

Registered User
Aug 29, 2006
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SW Scotland
Our local trust is currently reviewing the diagnostic and treatment procedures for dementia and I am one of two carers on their committee. I am intent on making it a rule that no one diagnosed with dementia is left with no direct access to dementia support services.

I'm in exactly the same position here, Duncan. I see my main function on the committee as to see that all gaps are plugged.

Slightly different for me because we're working on the implementation of Scottish Executive guidelines.

But the gaps seem to be the same!:(
 

Grannie G

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Apr 3, 2006
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Kent
Confusion, confusion, confusion..................

Last night, sundowning.........a repetition of the same;
`I can`t stay here.
I want half the house.
Help me get a ticket home.
I have no money.
Show me the bank statement.
Where does it say I get my pension?
Have you got a holdall I can have?`

And I tried so hard to comply;
I gave him a statement.
I marked his pension payments.
I gave him his bank books.
I gave him a bag.
I told him I would take him to the station tomorrow.
I helped him find his wallet, but I didn`t know where to find the missing £100.
I tried to talk to him, quietly, gently, persuasively, but it didn`t work so I had to walk away.

He told me he was frightened of me. Could this mean he is frightened of himself?
I know he feels I will get fed up of his behaviour.
I know he feels a burden.
I know at times like this he feels his blood family would feel duty bound to care for him.
Does he want to go before he thinks he will be pushed?

On waking this morning he asked when he starts school.
I told him he has finished with school, he is 76, he is an old man.
A look of realization crossed his face and he believed me.
He went back to sleep.

He got up. I asked if he was all right.
He said `I don`t know whether I`m coming or going.`
 

gigi

Registered User
Nov 16, 2007
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East Midlands
Hello Sylvia,

Time and again your patience with Dhiren comes through your posts..

And when you walk away from a situation with him you know you have done your level best to help..

I can imagination your frustration when things reach such a point.

Poor Dhiren...
He said `I don`t know whether I`m coming or going.`
....His insight is amazing...sadly that is creating more suffering for him.

Hope today is a better one for you both.....:)

love gigi xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
Thank you gigi

It is only on reflection I can write about it. Whilst it is happening it`s too upsetting.

I know others suffer more aggression, less insight, poorer communication, and I don`t know how they function.

Love xx
 

Mameeskye

Registered User
Aug 9, 2007
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NZ
Sylvia

((((hugs))))

It is so scary when you are uncertain of how anything you say or do might be taken wrongly. You do a great job, you stay calm and have learnt when you can do no more.

It is hard, but it is helping DHiren to function although he may not recognise it. He also knows that you are there, and unfortunately, like a child, he can lash out at you, becuase, deep down he knows that you love him and will be there for him. He maybe at times cannot name the relationship or remeber things but he knows that feeling still.


Hoping that you have peaceful day today

Love

Mameeskye
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
If it wasn`t so sad it would be funny.

Our hall has tiled flooring. Dhiren has taken to seeing this flooring as `outdoors` so whenever he vacs, he shakes the rug in the hall or hits it against the walls.
The walls are covered with cream textured paper.

We have no hot water. Our boiler has gone. We are entitled to a new boiler through Warm Front, but we have to wait. So I am boiling kettles.
Six kettles of boiling water give an acceptable bath.

This morning I was boiling kettles.
Dhiren was finding it hard to wait.
I put the Olympics on, but he isn`t following them this year.

So he decided to vac whilst he was waiting.

I managed to grab the vac and clean the rug first, then I handed it over to him.
He still shook the rug in the hall, slapped it against the walls, and I cringed.

I was still boiling kettles and he found his best black shoes in the wardrobe......the ones with the missing box.
He decided they needed a polish.
`Where`s the polish?`
So I had to rummage in the bathroom cupboard, on the bottom shelf, in the steamy bathroom, to find the polish. [We don`t use it very often. :eek:]
I put newspaper on the table . He didn`t know what to do. It wasn`t the old tin of polish, it was a new fangled squeezy bottle.
So whilst still boiling kettles I polished the shoes.
And he got the shoe brush to give them a shine.
I couldn`t bear to tell him they didn`t need shining, they would shine themselves.
And he couldn`t find the box. The missing green Clarks box.
So I found an empty box.
And we put the shoes away.
And he has had a bath.

And now it`s my turn.

Why am I posting on TP when I should be having a bath?
I`m boiling kettles. :)
 

DeborahBlythe

Registered User
Dec 1, 2006
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Dear Sylvia, hope the day is going better for you. I'm fretting about all that kettle-boiling. Could you manage without a bath for a day? I'm sure you are both sweet-smelling enough and it would be awful if you dropped a kettle and hurt yourself.:( Queen Elizabeth 1st used to have one bath per year and then only if she needed one. :) )
Love Deborah xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,443
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Kent
Hello Deborah and Christine

Dear Deborah,
You don`t expect I go through that rigmarole every day. :eek: Nor once a year either, but a couple of times a week is necessary. :)

Dear Christine, :D

The day has been much better thank you.
Thank goodness Dhiren is still entertained by the Athletics at the Olympics. We have watched together as he needs some commentary. Fortunately I like the games too.

And now Paul is with him watching the football. I`m making them a paella whilst they view, so today should be good.
 
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