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Old 28-10-09, 02:57 PM   #201
Eric
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Default Re: its getting harder to cope

Deedi,

Ok, just read this whole thread. I don't understand your entire care system so bear with me on this. This has been what..about a two two year thing happening here? And the system just isn't working. I haven't read Jimmy Pollards book but have watched him post for years. You have got to get this and read it. It's not terribly long..and it will **** you off that the care he describes is not what your husband has gotten. Don't worry about that. It is the care he needs. That's all you can change.

Now, once you read this.. where ever you think your husband will land somewhat permanently... get one contact there you trust. Two would be better. You have to work around the system and quit trying to work with it... it's not working. So you need to get the individuals close to your husband to work with you. There is always someone in just about any place who wants to be an expert, and also give good care. Tell the people you choose that you can see their talent in what they do. After you read the book, ask those couple of people to read it. They will be able to then handle your husband pretty successfully.

You have to get what Jimmy says yourself... and pay particular attention to his empathy to staff. You have to do that as well and stroke their ego at the same time time. When you get a few who do handle your husband well, then the question is how do these people do it and the others don't. That happens internally... they like to share success with each other. You create an expert or two yourself. You can keep fighting the system but that's just not productive. Even though I don't understand your system... any system is set up for populations, not individuals. The system is great for getting the flu vaccine distributed. It's great for heart by-passes. But the more specialized the care care needed the more a system is likely to be of little use. You just have to set up your own little system yourself. It's harder work, but the results are better.

I am not a nursing home expert. But I fell into creating good care for my wife. I had to unlearn what I knew from home care. The first year... yes year... was at times almost as hard of work as caring at home myself. But that could have been cut down a lot if I had had a plan for the nursing home as we enetered it. I never, never, never would have believed that a place with 15 people with HD would be anything but a nut house. My wife in the beginning made it that way all by herself. Yet now there are 15 people with HD there... and walk in any given day and it's quiet and running pretty smoothly.

I know ya feel you can't win... but I think you can with a plan..one outside the box and with some personal elbow grease. I will be happy to help toss a plan together with you. I mean what the heck? If a new plan works you are way better off... and if it doesn't you are no worse off. I do think we create one happy space for your husband. That is all we need... one little happy space. And when hubby is happy everyone is happy... right?

Let me know if I can help...
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Old 17-12-09, 01:46 AM   #202
deedi
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Default Re: its getting harder to cope

Hi Eric and guys,
Thanks for all he messages...Sorry ve not been on the message board for a while....

But the update is that hubby was moved to St Andrews in Northampton 6 weeks ago, and the difference in him is amazing..He is doing really well, as the staff there understand him,and help with his needs...Hes a lot calmer and i really think in my heart that he is a little happier to..There has been no outbursts or problems since hes been there,which is great, he is not irritable or edgy either..

The next problem is now how do i keep him there????????????
The pct want to move him in the new yr as the cost is to high and they wil not pay it on a permanant basis so hubby has to go else where, But where??? I wish i knew...................

When he is moved, i believe the problems will all come back again, and we will be back to square one, and all the work that St Andrews have done will be for nothing.....

Im going to fight to keep him there, so wish me luck.......

Thanks for all the support guys......xxxx
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Old 17-12-09, 02:00 AM   #203
Eric
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Default Re: its getting harder to cope

Quote:
Originally Posted by deedi View Post
Hi Eric and guys,
Thanks for all he messages...Sorry ve not been on the message board for a while....

But the update is that hubby was moved to St Andrews in Northampton 6 weeks ago, and the difference in him is amazing..He is doing really well, as the staff there understand him,and help with his needs...Hes a lot calmer and i really think in my heart that he is a little happier to..There has been no outbursts or problems since hes been there,which is great, he is not irritable or edgy either..

The next problem is now how do i keep him there????????????
The pct want to move him in the new yr as the cost is to high and they wil not pay it on a permanant basis so hubby has to go else where, But where??? I wish i knew...................

When he is moved, i believe the problems will all come back again, and we will be back to square one, and all the work that St Andrews have done will be for nothing.....

Im going to fight to keep him there, so wish me luck.......

Thanks for all the support guys......xxxx
Glad things are good for the time being. Hope they stay that way... :)
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Old 17-12-09, 03:25 PM   #204
just1moreperson
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Default Re: its getting harder to cope

Just goes to show what a shambles the last lot were, disgraceful really. Do they still claim to be able to care for people with HD?

I hope things go ok for you and hubby Dee.

Tc, Matt.

Jacq I saw that programme and it was very sad.
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Old 18-12-09, 09:38 PM   #205
dennisw
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Default Re: its getting harder to cope

Hi Deedi,
Good to hear hubby is so much more settled at St Andrews.
Taking on the pct is the next challenge and how depends on the ircumstances.
If I recollect hubby was Sectioned for the move to St Andrews?
I guess this was a section 2? Was he moved to Section 3?
If he was then under the Mental Health Act the PCT have a legal obligation to pay for what ever care the Resposible Medical Officer defines within the care plan regardless of cost.
H ave a talk with the RMO and get him on side.
You may need to get some legal advice, hubby should be aable to get legal aid.
You need a specialist lawyer, we had a good one in the north east.
If you pm me I can give you her number, she may not take the case as to far away, but may be able to help with a name in your own area. Mental Health Act is a specialist field.
It is a pa9in, but things have to be done in writing.
Perhaps your RCA can advise.
I can talk through our experience if you think it will help, pm me and I will give you my number.
Again it is good to know hubby is so much better.
Dennis
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Old 17-02-10, 04:32 AM   #206
deedi
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Default Re: its getting harder to cope

Hi Guys,

Its been a very busy few months, so sorry for not updating you on how things have been going..

Well, hubby is still at St Andrews, and doing well. We had a CPA meeting the other week, and a member from the PCT turned up (to my suprise). Well, they have agreed to extend the funding until at least April, but hubby will still at some point be moved, unless we can stop it..Which we are still trying to do...

Sorry ive not been intouch Dennis, but i will in the next week or so, if that is still ok with you..

Hubby is doing ok, but is slowly getting worse. His balance is very bad and so is his speech now..The consultant is also talking about a peg now. But i dont think hubby will have one anyway..

Does anyone know because hubby is under section can they put in the peg without his concent..Im asking because he wrote out a living will a while ago and it states in it that hubby does not want a peg fitted at anytime..
So will the living will hold up even though he is now under section????
Just wondered if anyone had any idea..
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Old 17-02-10, 06:35 PM   #207
jillb
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Default Re: its getting harder to cope

Dear Deedi

Glad that hubby is still in the best place, and it can continue.

Sorry no idea about the peg. Hope he gets what he wants though.

Hope you are managing ok.

Jillx
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Old 17-02-10, 07:06 PM   #208
dennisw
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Default Re: its getting harder to cope

Hi Deedi,

Feel free to contact me anytime.

Re the peg, while Jack was under section and in Billingham Grange, equivalent to St Andrews but up north, his nominated nurse discussed peg feeding with him, at a time when he was particularly unseettled and trying to find out why. She was concerned he was on a unit where some resident were peg fed and this was upsetting him. During the talk he stated he would not want peg feeding. This went into his notes and as far as I could tell, would be honoured even though he was under section. The fact your husband made this expressed wish prior to the section, it should be honoured. If you were concerded I would discuss it with the care team to ensure they are aware of it. If you were still worried, you could either as "nearest relative" appeal against the section, or have hubby appeal himself, in which case he should get legal representation under legal aid.

Pleased to read he is more settled and he has an extension at St Andrews. Pity you have to, but keep battling in there for him. I would guess the PCT turned up to the care plan review because they know the Mental Health Act and they have significant responsibilities and the consultant has quite a lot of power.

Best wishes
Dennis
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