In despair!

[LadyA]

Still waiting for funding approval for William to go to a nursing home. I was told it was being processed urgently, normally takes 8 to 12. weeks. It's been around 8 weeks since I applied. I just rang, and was told it's now taking about 12 to 14 weeks, and our application hasn't even reached the waiting list yet! No such thing apparently as "urgent "! Meanwhile, we are back to aggressively resisting being changed. He was covered in s**t when I got home from lunch, and still Resisted being changed. Fed up of life. Completely.

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[Ann Mac]

Oh, LadyA, I'm so sorry - is there any chance that your GP or a Social Worker can shout out on your behalf and try and speed things up? This is just so unfair - I'm not surprised you are fed up x

 

[stanleypj]

So sorry to hear this Lady A. It's one of those situations where you feel that there must be a better way of progressing things, especially in circumstances like this. And the wait is getting longer.

Every time I hear or read someone saying how successful the dementia awareness campaign is I wonder if they are living in the same universe. They should be required to spend all day on TP trawling through post after trawling through all the posts from people who simply aren't getting the help they need.

 

[Saffie]

I, too, am sorry Lady A.
It probably is worse after your short period of respite when you were able to experience a bit of normality in your life.
I do hope they speed things up a bit.

 

[Spamar]

Oh no, I am sorry. I must agree with you Stanley, dementia awareness all over the place, extra clubs etc in our area, and county council pulled the plug on respite care, now everybody has to pay! And they've put the prices up! How is that better?
Furious.

 

[LadyA]

I talked to the CPN. And left a message for the PHN. CPN says nothing I can do but persevere. I said I could pack my bags and leave him on his own. She said "Oh, you couldn't do that! " I told her that if he gets aggressive when I need to change him again, then I'm just leaving it. He can stay wet. She said I couldn't do that either, as that would be neglect and I'd have the social worker down on my back! Unfortunately, she said, there is not a lot we can do except wait it out. - And if he gets aggressive and I can't cope, take him to A&E. And to hang in, cos, blahblahblah! "Who cares for the Carers?" No-one, that's who!

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[LadyA]

System doesn't work the same here. All the funding applications are processed from a faceless "central office ", and the funding is released in batches every few months! So if your application isn't far enough along when one batch is released, then even if your application is ready a few days later, it has to wait until the next batch of funds is being released, is what I gather. Insane system!

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[Izzy]

Lady A I am so sorry to hear this news.

 

[Katrine]

Take him to a&e how, if he is aggressive? Tell the SW that he's refusing personal care, you've been told that this must not be neglected, so what are SS going to do about it? I know that won't make any difference, but you shouldn't be threatened with SW telling you off.

You are a voluntary carer, you're warning them you may have to withdraw your care to protect your personal safety. Perhaps you would have to do this, it may be the only way to get action, but are you really prepared to walk out? How disgraceful that the CPN recommended what used to be called 'grannie dumping'. However, maybe this is how your emergency respite system works in ROI?

 

[jeany123]

LadyA this is terrible, I am so sorry, as you say "insane system' I wonder who thought that would work well

I am thinking of you and hope something gets sorted soon xx

 

[LadyA]

P's Pipe! I know people on here care! Other carers - it's those pen-pushers & politicians! They should all have to do work experience - if they are dealing with dementia carers, they should have to work 1:1, 24/7 with someone with moderate -severe dementia for eight months to a year! Then they just might have an inkling of what they are dealing with, as they process forms!

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[LadyA]

P's Piph know people on here care! Other carers - it's those pen-pushers & politicians! They should all have to do work experience - if they are dealing with dementia carers, they should have to work 1:1, 24/7 with someone with moderate -severe dementia for eight months to a year! Then they just might have an inkling of what they are dealing with, as they process forms!

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[Moonflower]

That is so unfair and ridiculous. If someone is aggressively resisting care, how on earth are you supposed to safely get them to A&E?

I would write to the SW, consultant, GP etc so they've got a record of it and can't deny that you told them. Say that you cannot safely care for him due to his aggression, and that therefore his personal care isn't going to be done.

 

[cragmaid]

I thought your GP was going to push this? Ring him daily.

I'm afraid that William is going to end up with more sores because he is refusing personal care.
I just hope that you don't suffer too much agression, would it help if you mentioned his family..as in "Your Mother said you had to let me do this"? Sometimes it can work!!

Other than that, I can only feel so sorry for you. You've had your hopes built up and now they are crashing down again.

With love ( because I can't help in any other way) Maureen.x.

 

[LadyA]

Dunno what my phone is up to! Katrine the CPN meant not to dump him in the hospital, but to hope they would admit him to the EMI unit.I doubt it an physically he's fine. We've never seen a social worker. Wm is angelic, except about personal care,& getting dressed etc. And not sleeping. So I'm exhausted too which isn't helping. And, I suppose, reality is, even if funding came through now, there isn't a vacancy in the nursing home. There'd be hope though!

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[LadyA]

I thought your GP was going to push this? Ring him daily.

I'm afraid that William is going to end up with more sores because he is refusing personal care.
I just hope that you don't suffer too much agression, would it help if you mentioned his family..as in "Your Mother said you had to let me do this"? Sometimes it can work!!

Other than that, I can only feel so sorry for you. You've had your hopes built up and now they are crashing down again.

With love ( because I can't help in any other way) Maureen.x.

:-D But you see, I'm his mother these days! I should be flattered - she was like one of those glamorous film stars from the 1930's!

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[LadyA]

Anyway, thanks all. I'm feeling a lot calmer. Plod on. I suppose the funding will come sometime!

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[truth24]

Sorry to hear you are having such a tough time. It's undone all the good your respite did. Hope you get good news soon.

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[LadyA]

Sorry to hear you are having such a tough time. It's undone all the good your respite did. Hope you get good news soon.

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Ah yes. The respite did do me a power of good - but all the good it did was undone within less than a week of William coming home! It was such a nightmare to deal with him, he was so unsettled, unco-operative, etc. and absconded even - I found him down on the main road, which is 1/4 of a mile away! He can't walk nearly that far usually! - that I decided he wasn't going in for respite again! It's not worth it. He's due to go for respite again on 9th June for a week - I've told the CPN that I won't be putting him in, as it's not worth it to me, it's too upsetting for him when he comes home, and it's too upsetting for me having to have him back again at this stage - but she says to wait and see, I might be glad of it. But I won't. It would be like giving someone five minutes relief of pain, when they are in constant agony - the agony seems worse when the pain comes back, because they've had a taste of what it's like to be without it!

Oh - and I found the poo!! This evening, finally! Remember, I said that when I got home from work at lunchtime, William was covered in it? Well, I couldn't find the majority of it - so eventually, I came to the conclusion that he had put it in the loo. This evening, after tea, I went to the bedroom for something, and I could get the awful smell still. First, I thought "Gosh, this place still stinks from when I changed him! How can that be?" - and then, I really thought "Hang on. how can that be??" so went on a thorough search of the bedroom. Under the bed? No. In the wardrobe? No. Nightstand? No. Aagh - not in the bed?? whew - Nope! Hmm. Dresser drawers?? Nope! Bookshelves?? No! Finally!! Triumph! Stuffed into a flowerpot, as a sort of top-dressing on the compost! Pot and all went in the bin!

Happy to report though that he was angelic for the evening, and got changed and went to bed with no trouble. A friend said "Maybe now and then a jolly good telling off doesn't do him any harm!" She may be right.

 

[truth24]

It's amazing where they find to put it isn't it? I find it all over the place. Goodness knows what would happen if we didn't have keen noses. I think the worst thing tho is that he doesn't think to wash his hands. Just keeps rubbing them together so that little bits fly off all over the place! Did we sign up for this? At least we can talk about it here. Would be very hesitant to talk about this to friends but at least the family know. My dau says she couldn't cope but then I never thought I would but you do after the initial horror. He is off to respite tomorrow just for 3 nights while the family gather for my grand daughter's wedding down on the Somerset Levels. Have mixed feelings of excitement and guilt but the home is excellent, have visited with him and seen his room and I know he will be well looked after, just hope he will settle down for the short time he is there. Of course he might enjoy being away from me so much that he won't want to come home to the wife he dislikes so much!

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