So bizarre !

[Amy in the US]

Oh, Ann, dear Ann, I am sobbing reading your posts. Thank you for taking the time and energy to update us as you must be shattered.

I hope the funding/whatever paperwork, goes through ASAP and that you need have no more dealings with it.

I hope MIL can be made as comfortable as possible with palliative care, hospice, whatever is available.

Sending masses of (((((hugs))))) to all the Mac family.

DO NOT WORK unless you really, really want to and it would be distracting in a good way. Now would be a good time for compassionate or family leave, or maybe even to quit, but at least, get some rest, please, Ann. You know all the extra hours you have worked without compensation? They just came due.

 

[rainbowcat]

Not sure if I've posted on this thread before (I have a feeling I have!) - but I've been lurking and reading since before I joined.

Just wanted to post to say thank you so much for all your posts, Ann, and that I'm thinking of you and your family. I hope all the medical and palliative care is put in place ASAP, and that MIL has the best passing she and you all could wish for. xxx


(ps: the pointing and staring into the corner of the room? My mother - who had cancer - did a lot of looking and watching "over there" during the last week or so of her life. Something was catching her attention during the awake times, and she seemed bemused by it.)

 

[2jays]

Wrapping you in a warm squishy hug @Ann Mac hoping today is as calm as it can be for you

Hugs to all xxx

 

[jugglingmum]

Ann - thinking of you and hoping the 1:1 is sorted out today

 

[Slugsta]

Just popping in to top up the (((hugs))) for the Mac family.

 

[Amy in the US]

More (((((hugs))))) for you all.

 

[Ann Mac]

Thank you for the {{{{{hugs}}}}}, and the support, all of you xxx

I couldn't take time off yesterday, much as I would have liked to. New project, taken a lot of work to set up, and not just work from me, but from others - couldn't let them down.

OH spoke to chap from health board, yesterday. In a nutshell, his manager has requested 'more evidence'. 1-1 hasn't been refused, he assured OH, it will happen - just more evidence needed! Numerous safeguarding incidents, numerous incident reports of staff being injured with everything from scratches and slaps to broken bones, behavioural reports documenting instances of verbal and physical aggression, repeated instances of her being found on the floor after either throwing herself from the chair or simply writhing her way off it, her arms and legs a patchwork of bruises and skin tears as a result of all the behaviours - and they need 'more evidence'. He can't give us a time line. I presume that knowing that Mil is also on palliative care has this manager thinking that if he can just hold off long enough, she will conveniently die before they have to fund anything extra. I honestly believe its that callous and calculated.

I just don't have the words at the moment to say how I feel. Its another battle isn't it? We have talked about Mil paying for the support with staff at CH, and been advised not to - lots of reasons, the only one that matters to us at the moment is the fact that its not straightforward to set up, the CH can't provide from their own staff unless it comes through the health board, so it means finding a decent agency or several individuals, with all the paperwork and meetings and organisation that would require and it all would probably take even longer to put in place than doing battle with health board would.

OH saw Mil yesterday - sleepy and 'flat' for some of the time, mixed with chatty and writhing and sudden agitation. Staff say she is still mobile - after a fashion, when the severe agitation kicks in, but is so unsteady that a fall, more likely sooner rather than later, is inevitable. She has also started to kick out at residents who tend to wander around the lounge, and trying to either knock them over or trip them up. Leave her in her room, and she is out of her chair or the bed and on the floor every few minutes, when she is agitated - put her in the lounge where there are always staff on the floor, and there is a risk to others, it only takes the staff not being able to get to her quite quickly enough. The contradictions between the 'flat' and sleepy periods, and the periods of agitation are just unbelievable.

Son and his GF are here, I think oldest is planning to also arrive today, just for an overnight stay.

Thank you so much, again - coming onto TP, and reading the posts from you all and knowing that you care means more than I can say xxxx

Love to all xxxx

 

[carolynp]

Thank you for the {{{{{hugs}}}}}, and the support, all of you xxx

I couldn't take time off yesterday, much as I would have liked to. New project, taken a lot of work to set up, and not just work from me, but from others - couldn't let them down.

OH spoke to chap from health board, yesterday. In a nutshell, his manager has requested 'more evidence'. 1-1 hasn't been refused, he assured OH, it will happen - just more evidence needed! Numerous safeguarding incidents, numerous incident reports of staff being injured with everything from scratches and slaps to broken bones, behavioural reports documenting instances of verbal and physical aggression, repeated instances of her being found on the floor after either throwing herself from the chair or simply writhing her way off it, her arms and legs a patchwork of bruises and skin tears as a result of all the behaviours - and they need 'more evidence'. He can't give us a time line. I presume that knowing that Mil is also on palliative care has this manager thinking that if he can just hold off long enough, she will conveniently die before they have to fund anything extra. I honestly believe its that callous and calculated.

I just don't have the words at the moment to say how I feel. Its another battle isn't it? We have talked about Mil paying for the support with staff at CH, and been advised not to - lots of reasons, the only one that matters to us at the moment is the fact that its not straightforward to set up, the CH can't provide from their own staff unless it comes through the health board, so it means finding a decent agency or several individuals, with all the paperwork and meetings and organisation that would require and it all would probably take even longer to put in place than doing battle with health board would.

OH saw Mil yesterday - sleepy and 'flat' for some of the time, mixed with chatty and writhing and sudden agitation. Staff say she is still mobile - after a fashion, when the severe agitation kicks in, but is so unsteady that a fall, more likely sooner rather than later, is inevitable. She has also started to kick out at residents who tend to wander around the lounge, and trying to either knock them over or trip them up. Leave her in her room, and she is out of her chair or the bed and on the floor every few minutes, when she is agitated - put her in the lounge where there are always staff on the floor, and there is a risk to others, it only takes the staff not being able to get to her quite quickly enough. The contradictions between the 'flat' and sleepy periods, and the periods of agitation are just unbelievable.

Son and his GF are here, I think oldest is planning to also arrive today, just for an overnight stay.

Thank you so much, again - coming onto TP, and reading the posts from you all and knowing that you care means more than I can say xxxx

Love to all xxxx

Oh Ann it is just appalling. Unbelievable response from manager. Just wanted to send solidarity hugs and sympathy to you, your OH and your family. May you find the strength to keep going. Love Carolyn.

 

[Cat27]

That’s shocking Ann. It’s disgraceful that you’re having to fight for funding at this late stage.

 

[Bunpoots]

I'm too horrified to comment but just wanted to add my support x

 

[Batsue]

It is disgusting that they should be thinking about money at this time.
Thinking of all the Mac family xx.

 

[CeliaW]

So very sorry to read this Ann.

Could be helpful to contact the local councillor who holds the portfolio for Adult Care and advise him/her of the situation. (I think you did that over the respite beds issue). It often seems to have a motivating effect.

Take care, supportive hugs for all of you xx

 

[Oh Knickers]

Ann, like many others, I have read your posts for quite a while now. What has impressed me is the care and thought, never mind the huge amount of personal care, you have provided for your MIL.

I echo what Celia has written and would go further. May I suggest you write to your local MP and Jeremy Hunt, Secretary of State for Health and Social Care? I would also provide a link to your posts here as an educational link.

If organisations making decisions are playing hardball just show you are prepared to play even harder. Copy the contact names to the above as well. For your MIL's care home to spend the huge amount of hours photocopying their evidence is a testament in itself.

Very best of luck.

 

[Spamar]

Absolutely gobsmacked that any jobsworth dare question this on a patient that is having palliative care.
May this never happen to his parents!

(((((Hugs all the Mac family)))))

Just astounded!

 

[2jays]

She has also started to kick out at residents who tend to wander around the lounge, and trying to either knock them over or trip them up. Leave her in her room, and she is out of her chair or the bed and on the floor every few minutes, when she is agitated - put her in the lounge where there are always staff on the floor, and there is a risk to others, it only takes the staff not being able to get to her quite quickly enough. The contradictions between the 'flat' and sleepy periods, and the periods of agitation are just unbelievable.

More evidence towards 1:1 ?

Wonder how the senior manager sleeps at night???

Other words fail me. HUGS xxx

 

[RedLou]

I was just going to suggest the MP. I'm wondering if she injures herself if you can sue them -- might it be worth saying that should it happen, you will consider taking further action, and also you will inform the family of anybody she may injure that the reason for this is because one-to-one care had been delayed. I think it's a matter that you have to be unpleasant to these people to get anything done. If you hadn't lost it with the guy over his attempt to reschedule you'd still be waiting. I agree with you - it's that callous. We can find monies for wars but not for our old people. Sorry, I'm ranting on. Sending love and virtual hugs, as always.

 

[Slugsta]

Ann, you must be veering between being incandescent with rage and completely devastated! It seemed that this issue had been sorted and now they put another hoop for you to jump through. Just how much more 'evidence' can they possibly need?!

I hope, for everyone's sake, that this is sorted out PDQ and that no-one comes to harm in the meanwhile.

Sending more (((hugs)))

 

[jugglingmum]

Ann - I'm so sorry to hear this

I think pointing out the risks to the other residents of the home might be the way to go

WRong wrong wrong, but if they think that they might be sued by the relatives of the other residents it might kick them into action.

Sending hugs and hope son and GF have a good visit

 

[Spamar]

Red, I think its a subject on which we can all rant! No apologies necessary!

 

[annebythesea]

Oh Ann, it seems your cynicism on the day was justified in spades. After all the noise the chap made on the day about how appallingly you ALL had been treated by the NHS from the top to the bottom (I still remember you having to check every prescription had been filled right by the pharmacist) to be treated this way is just gutting. I really think you have to make as much noise as necessary until this gets resolved. There are letters in the Times this week from carers, including TP members, perhaps they would be interested?
Meanwhile you are in my thoughts, and I am wondering if there is any way the medication strip can at least be started, surely that only needs the consultant to alter the prescription?