Please..if there is a god out there..

[Canadian Joanne]

Dear Gigi,
I can't believe that CPN. Did she mention the criteria he meets to stay at home? They must be extremely basic criteria - independent breathing comes to mind. Sorry, I'm just being snarky here.

You may well be a little depressed but I think it's carer burnout. Have a good chat with your GP. I hope things go better tonight.

Love,

 

[ella24]

To offer a pill as a cure for being stressed out with the responsibilities of caring is exploitation of a carer to the nth degree.
.

I completely agree - how many other medical conditions require the carer to be medicated to a greater extent than the sufferer themselves?

 

[lin1]

really dont know where that cpn is coming from
dont she realise people can only cope with so
much for so long.

we all know if we get the little bit of help we all need from time to time none or at least very few of us would end up suffering so.

I do hope the doc is more understanding and can help.

love and great big ((((((HUG))))))TO YOU

 

[Canadian Joanne]

I completely agree - how many other medical conditions require the carer to be medicated to a greater extent than the sufferer themselves?

Ella, completely relevant point. Gigi, you should mention this to that CPN.

 

[Skye]

if he was self funding then he would be demented enough!!!!- it would seem that dementia is measured by how much it will cost the LA

You're right Sue, it all comes down to money. Self-funders don't cost the LA anything, and in fact save money because the home care package is no longer needed. So self-funders are encouraged to go into care.

I'm not actually sure that the CPN can make that decision. She's employed by the NHS who wouldn't be involved in funding. Your case needs to go the LA funding panel, and your SW can make that report. Unless things have changed?

 

[danny]

UNNNBEEEELIEVABLE!
I hope your GP gives you more support,no wonder you are feeling like you are,kind regards,Angela.

 

[connie]

I really feel for you Gigi.

Please don't pull your punches when your GP calls this evening.
Maybe he will have more sense.

 

[Bookworm]

To cross to say much - firstly you don't come across to me as depressed - how'd you mange to be in London with the gals? We have the evidence, secondly how would you be so eloquent & able to express your needs here - you are simply exhausted & I'm sorry but this sounds awfully like it is motivated by cost saving. I really hope that something of the energy and love from us here will steel you to get the GP on board. Reminds me of that point in the Bible where it talks of giving a stone when you simply asked for bread.....

I guess we are back to the idea of emergency respite & then take it from there? How long did this amazing assessment of you take - were any assessment tools used to make this assessment of you? Where was the negotiation with you - sounds as if you were just told......

I'm dearly hoping for some reassurance from the GP that your situation will be taken seriously....

 

[gigi]

I love your indignation...thankyou!

how many other medical conditions require the carer to be medicated to a greater extent than the sufferer themselves?

Ella, that's a classic...

I like Joanne's "independent breathing" too!

The GP is probably not going to have any answers for me either. His main purpose in visiting tonight is because the carers think that Eric is deteriorating physically, and the SW thought the GP should check him over.

But I will tell him how I feel so that he is aware of the situation.

And then I'm going to bore you all to death by discussing coping strategies with you...

It's pretty obvious that things are going to continue here as they are. Somehow I'll have to live with that inbetween respites.

For now James Bond is doing the trick. I haven't been shouted for in well over half an hour..

Love xx

 

[Helen33]

Dear Gigi,

She's employed by the NHS who wouldn't be involved in funding. Your case needs to go the LA funding panel, and your SW can make that report.

Is the Social Worker of the same mind as the CPN?

I am so sorry that it is such a struggle.

Love

 

[Skye]

Unless things are different in England, the CPN can only assess Eric, she has no brief to assess the carer, though it does seem that she thinks she has thatright.

Your SW should re-assess you under your care's assessment, gigi. Make sure you insist on that. It may not help, but it's always worth a try.

 

[Winnie Kjaer]

Hello Gigi
I am so sorry to read about your negative meeting. I agree with others in as much that I do not think it is up to your CPN at all and that you should ask for a further assessment for both of you individually from the SS.

The only thing I can suggest is that you ask for a full care package to be put into place and then take yourself out of the house.

Perhaps if a few care workers state the obvious as well as yourself, this may get things moving for you.

This is IMO really good advise from Tina. I know you have earlier stated that you would not feel comfortable with carers in the house more than you already have, but I really think you should try to accommodate them. Give it a month or so and see how it works. At least you would get regular breaks during the day and as Tina says the carers would experience and report what you are reporting.

Another thing I feel and you will not like this, is that if you husband is not really "ready" as you put it for residential care, then it would maybe be better and fairer to him too to be cared for at home. On top of your care package you should be able to arrange a sitting service through Carers Link or other organisations for at least a couple of times a weeks. Get out of the house as much as possible or remove yourself to another room and do something you enjoy. You would then hopefully cope with your husband's needs better during the remainder of the time.

You should be able to have an emergency assessment within a period of 10 days.

I really hope you manage to achieve something that will at least be a compromise between what you are looking for and what is on offer.

I now your GP is there now so I am praying for you to receive the support you so desperately need.

 

[jenniferpa]

Another thing I feel and you will not like this, is that if you husband is not really "ready" as you put it for residential care, then it would maybe be better and fairer to him too to be cared for at home.

I don't like this either, as I feel that none of us are there so we really do not know whether Eric is ready for residential care.

You're entitled to your opinion, Winnie, but I don't think that part of it is especially helpful.

 

[Tender Face]

Can I just add a ‘ggggggggggggrrrrrrrrrrrrrrrr’ on your behalf. Gigi ... I am lost for words .... (well, I’m not, but they’re not allowed on TP!)

And since when did ‘stability’ and ‘dementia’ ever belong in the same sentence?????

Oh, I so feel for you ... do hope the GP comes up trumps,

Love, Karen, x

 

[JPG1]

Gigi,

Please correct me if I’m wrong here – and I know that someone else will, if you can’t – a CPN is not employed by the Local Authority, but by the NHS/PCT.

A CPN may be part of the MDT, but s/he should refer you to the appropriate person. Who may be your SW.

A CPN is a nurse, and a nurse cannot assess the ‘eligibility criteria’ for a care home placement. Regardless of the funding situation. And tell the CPN that Eric may soon be ‘living on his own’, because you may just jump over the gate.

Remind CPN that there are many people placed in care homes who are not violent, not likely to wander, and not likely to give the CPN a black-eye, which Eric’s ‘main support mechanism’ may feel the need to do soon. With lots of assistance from ‘others’.

Of course, anyone self-funding can move into a care home tomorrow, if they wish to do so. And the SS would not even need to know about it. Anyone who is not self-funding has their case put together by SS/SW and it goes to the LA panel – who get out their rubber stamp, and then the person is put on the local waiting list. Nothing to do with a CPN – well, not where I live in England anyway.

If Eric (without your care) would be entitled to a full care package at home, then invite the CPN to put that package in place. But then the CPN will tell you that she can’t do that because it’s outside her responsibilities.

And ask the CPN/SW to show you where it is written in stone that you are required to be the "substitute care-package", plied with anti-depressants, in order to enable you to carry out the requirements of the CPN!!

And, a final straw, tell the CPN that you are allergic to each and every anti-depressant on the books. If you weren’t before, you are now.

I just hope your GP has a more open mind, and more awareness of the responsibilities.

 

[susiesue]

Gigi, just a thought but could you get the Care Home where Eric goes for respite on your side. Afterall, they have lived with him and know exactly how 'demented' he is and whether he could possibly live on his own

I know when I spoke to David's respite Care Home about my concerns about the LA continuing to fund after his money runs out, they said they would always back me up and are keeping a record of how demanding he is, one to one care etc etc.

It's just an idea.....

Love

 

[dillydaydream]

Blood boiling!!

I am just as outraged for you as I was a few weeks ago when I heard the same from our SW.

There must have been a secret directive to all and sundry, whether SWs or CPNs, to block all admissions to residential care. Tell them you can't cope any more, you're off to stay with relatives abroad, so they need to put in a care package immediately. Let them work it out - Eric is only non-aggressive because you are sacrificing your own life to look after him so well. Let the care workers step in and see how they cope.

I too was told that I needed anti-depressants from an SW who knew nothing about me, my medical history or whether this would be advisable.

How dare anybody be so dismissive of your anguish.

love
Carolyn
xx

 

[sue38]

Allow us to enter a fantasy world for a moment:

Congratulations Gigi, you've just won £45m on the Euro Millions - that's you - not Eric. You have booked a 6 month world cruise, and who knows you might settle permanently in Papua New Guinea if the fancy takes you. You could take Eric, but he gets dreadfully seasick. "Here you go CPN, take over where I've left off, and see how long you manage with Eric at home".

I don't mean to be flippant, but you don't have to do what you're doing.

I hope the GP is more constructive.

 

[Mameeskye]

Gobsmacked!!

I cannot believe the lack of empathy shown by the CPN. That is absolutely shocking.

I will say at the moment CH funding is always sticky as the LAs reach the end of their budget years. In April thiings tend to improve again as a new financial year begins. It is not the way it should be but it is the way it is, and come the start of April you may get a completely different response.

I would be tempted to call their bluff, make a GPs appointment, at a time convenient to you and tell them they must arrange sitters and then go and speak to your GP, for yourself, not as an addendum discussion to Eric, but how you are doing. The stress you are under is unbelievable and to cease to get support from the professionals is appalling, both for your own and the safety of Eric.

If your GP reckons that you are not fit to continue caring they must have some mechanism of dealing with emergency respite, until such a time as you are either fit, or the stable dementia has progressed! (I would love to know how anyone can class a condition with the prognosis dementia has as "stable", particularly with vascular involvement, there is no such thing!!)

My heart goes out to you Gigi and I only wish I was closer so that I could at least come and make you a cuppa and give you a shoulder and listening ear!

Love

Mameeskye

 

[Bookworm]

I guess I'd quite like to sit the CPN down with a copy of this thread, her job description & a copy of Nursing & Midwifery Council Code of Professional Conduct that she is Registered to work to......