Oh for crying out loud...

[DeborahBlythe]

Hello Jennifer, I understand your situation better. Thanks for setting it out so clearly and commiserations on the complexity of it all..I'll try not to suggest vexing solutions again quite so readily.

You mention to Cate that you don't think your mother would be entitled to any subsidy for a night sitter. You need to look at the benefit called Attendance Allowance, which is not means tested and comes at two rates; Day, and Day and Night. See:-http://www.counselandcare.org.uk/assets/library/documents/3_Disability_Benefits_AA_and_DLA.pdf
and http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_welfare.htm

It's not a huge amount but worth claiming anyway. The form filling is a bit of a challenge, but not impossible.

I think it might help if you contacted a Social Worker and asked for a Community Care Assessment for your mum. Ok, she is self funding at the moment, but everyone is entitled to these assessments regardless of financial situation and it would help to be clear what the professionals think your mum's care needs are turning into.

 

[jenniferpa]

Dear Deborah,

She's already gets the highest rate of attendance allowance - actually that was one of the easiest things to arrange. I agree, she should have a community care assessment. Unfortunately, being in hospital seems to put a stop to that - hospital social workers seem to be responsible for 2 weeks post discharge (not that we're there yet). Only after those 2 weeks do LA social services start to have input - I've been caught in this bind before.

Please don't stop making suggestions - I need all the suggestions I can get! All of them are gratefully considered - if nothing else it reassures me that I'm not missing something.

Dear Cate - do you really think this type of care might be close to reasonable? I have been thinking £12-14 per hour. Does that seem to be optimistic or pessimistic?

Jennifer

 

[Cate]

Hi Jennifer,

I think that amount would probably be about right, but dont take my word for it, they may for instance offer a lower rate for long term contract. The agency I worked for was local to South Wales, if you want to PM the area in which your mum lives, I would be happy to do some research for you on a local to that area agency. It has to be worth a phone call, even if its just to cross it off your list of possible solutions.

Another possibility would be to advertise privately for a night sitter for your mum, which I would think would cost you a lot less paying the person direct avoiding the agency cut. Obviously you would have to be really careful in your selection in terms of trustworthy, competance etc., interviews etc would be something you could pre arrange before your next visit.

There are a lot of nurses out there, which due to family circumstances of their own can only work nights, and since the onset of new contracts of day/night rotation, have left the NHS because they have nobody to look after family during their day shifts!!

Let me know if I can help you in any way.

Love
Cate

 

[jenniferpa]

Thank you Cate, I'll pm you.

Mind you, at £12/hour 8 hours a night, 7 daya a week that comes to (gulp) £672 a week! Good grief.

Jennifer

 

[mel]

Jennifer......I've been sent some info on direct payments.....even though mum is self funding.........Might that be worth looking into via your mums social worker? I was due to meet with them last week but as I don't know if mum will be returning home I've had to postpone the meeting. Its unknown territory for me but I think that can be used for outside care

 

[jenniferpa]

Yes, I think it probably would be, if she ever gets a social worker! Her area has quite a detailed outline about direct payments and what they can be used for. Before this hospital stay her care needs fell below their requirements, but goodness knows what her needs will be after this.

Hows your mother doing?

Jennifer

 

[mel]

Hi Jennifer
Mum was very bright when I visited her yesterday.....the ward has been struck down with a sickness and diaorrhea bug and she seemed very" out of it "over the weekend.....but in mums case its passed thank goodness for her. I'll visit today and arrange to see a doctor regarding future care.

 

[jenniferpa]

Another day, another diagnosis

Having spoken to the hospital I am now being told that they feel she may have had (another) stroke. So, she's having a CT scan. I put another in parentheses, because they didn't seem to grasp the fact that she had already had 3. Her carer is going to visit her today, so she's going to look and see if mummy seems weaker on the right side than she was before. Yesterday, I was told by the staff-nurse that "they" thought she might have an infection in her right leg; today, no one knows anything about an infection! I mentioned (again) about the bed-rails: if you put them up she will try to climb over them. This is new information to the nurse I'm talking to. I feel like screaming "she's the one with the short-term memory loss! What's your excuse?" Does the NHS not have pens to write down this information any more? I have requested a full assessment, but god knows if anything will happen on that front. They're still taking about physio and OT, but as I pointed out, learning to cope with new deficits is rather hard when you can't make new memories.

In a way, I'm sort of glad I'm here rather than there - frustrating as it is trying to get them to take this information on board from a distance, it's even more frustrating when you try to do it (with no sucess) when you're standing in front of them. Been there, done that. I think I'm going to book a flight 2 weeks from now - knowing how slow these things are, I doubt they'll get anything sorted before then, and I really do not want to be hanging around twiddling my thumbs while she's in hospital (been there and done that as well).

Jennifer

 

[Norman]

Hi Mel
folowing a community assessment and receiving direct payments ,I employed a personal assistant,for Peg at 14 hours weekly.
The day rate is £10 per hour and a sleep over would cost £56.
Regards
Norman

 

[jenniferpa]

Well, mummy is much better today - actually weight-bearing, and considerably more lucid. She still hasn't had a CT scan, in part because she has improved. I suppose there is a rationale in these cash strapped days not to do a ct scan if it won't affect the final outcome, but I can't say it's easy to hear. There is a definite sense, infected as I have been by the US system, that they should do every possible test, but intellectually I understand why they don't. They are still going to do a MDT assessment, or they will do as long as someone doesn't cancel it (and that's happened before).

Jennifer

 

[DeborahBlythe]

Jennifer wrote "I agree, she should have a community care assessment. Unfortunately, being in hospital seems to put a stop to that - hospital social workers seem to be responsible for 2 weeks post discharge (not that we're there yet). Only after those 2 weeks do LA social services start to have input - I've been caught in this bind before."

Well, when my mum was admitted to hospital, I went and insisted on the completion of the Community Care Assessment. We had requested it in December 2005 but it hadn't happened by March 2006 when she was admitted to hospital. I went and bearded the Hospital Social Worker in his den and said I didn't care whether he normally did Community Care Assessments or not, he could sort one out because they all work for the same authority at the end of the day and there is supposed to be a seamlessness in the services that patients and 'clients ' receive (and incidentally in the assessment processes ) (( Actually I'm embroidering here. I think I just stated an intention to complain about him and the whole flaming Social Service set up. Not too subtle and possibly not very fair either but there comes a time when a person has to throw a strop, and this was it. ))

He only took another month to complete it, but the resulting document, although flawed, was the basis on which we forced the Assisted Living Place to re-house my mother, after they had evicted her.

"Please don't stop making suggestions - I need all the suggestions I can get! All of them are gratefully considered - if nothing else it reassures me that I'm not missing something".

OK, here's a suggestion. Ask them to set up a conference call so that you can contribute to the discussion at the multi disciplinary team meeting? Use this link here to argue your case?
http://www.dh.gov.uk/PublicationsAn...97757&MULTIPAGE_ID=4924406&chk=M+vlu4

 

[jenniferpa]

Good link, good idea.

I have been in touch with the PALS department, who at least have the virtue that they are actually in the hospital and so can physically go up to the ward and see what's happening. In fact, at least some part of the MDT has already been started - speech therapist and physio. They seem to have moved the goalposts again, though, or maybe it's because this is a different LA: they no longer have the 2 week rule that I mentioned. The realities of the situation is that unless they do the MDT and make suggestions about appropriate placement, she won't be going anywhere, unless they are paying for it. I'll call them again tomorrow to see if I can set this up. I have to call the consultant to get a telephone conference, but they seem to be changing consultants again.

Jennifer