I'm sure of it - How else could everything go so perfectly wrong so many times? Some dark department of Human Endurance is experimenting on us.
We are just coming through a 'bad week'. My dear lovely has got so many things 'perfectly wrong' I felt I was breaking down.
0700 - ten minutes before the carers come to toilet her. They use the key safe and so I can sleep on. She wakes me and says she wants the loo. I've already done a 2300, 0200 and 0500 loo call.
Carer Person spec. Item 3 - "Does not require sleep."
Later in the day she does not ask to go to the loo. I prompt her, but she says no. Ten minutes later she says its urgent and she was trying to protect me from too much work, but now I need to rush like mad to get her there. So I really tell her off and say that rescuing often leads to issues getting worse and please just tell me the truth.
Two hours later I ask her if she would like pasta for her tea.... "No"
How about rice done as a pilau? "No"
Two more suggestions and two more "No's"
I ask her why she is saying no to everything, she replies she is being honest as I asked.
"So what do you want?" I don't know you always offer me a bit of choice and I choose from that."
What about the pasta then?... "No"....
Then there was the unplanned bowel movement 20 minute before the carers arrived for wash and bed, So guess who sorted that out?
Three weeks ago we had a DST. After three hard hours the assessor declared this was a review and now, "you need a DST"!
Today we had the DST... The CCG assessor was scoring everything too low by a long margin. I argued every point with some vigour. He topped it by saying. "None of what you are saying is evidence. I need evidence." I had given him detailed descriptions of things like falls and how they came a bout and where and when. He replied, well if your GP said it, it would be evidence. I really had had enough and asked him testily who would tell the GP? He started to form the word "You" before quickly saying that the carers haven't logged falls. I replied that's because there are two of them and they don't have them. Eventually I lost it and said that I wanted the assessment stopped. He looked a little worried and I explained to him that as an Ex- NHS practitioner I knew what counted as evidence and that I would stop the interview and make a formal complaint about his conduct. Also that he was systematically scoring low when the score above was a perfect description of the problem and that I would be very happy to evidence that to his manager.
We continued and gradually I started winning my points on hotly debated scores for each item.
At the end he announced that he was going to recommend Liz get's CHC funding. ?!!?
For good measure I got the Social Worker to agree that Liz was beyond the legal limit for social services social care. Best to close the escape route should he waiver.
Oddly we all parted on decent terms.
Does anyone want to chip in for a pile of signs we can put on our front doors?
"Beware of the Carer - It bites!"
CHC funding still needs approval though. Perhaps the CCG will have a British Airways moment and we can have a rematch? Best of three or something?
Bring it on!
Very tired and worn today... I get three hours respite tomorrow... but I might just chew through the leash.
Waiving
Kevin
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Your DST meeting sounds just like mine. The CCG assessor kept scoring too low in most domains despite my most vociferous efforts. She was also going on about needing more evidence. Sounds like you have a better chance though Kevin from what your assessor is recommending? You will get a written copy of the report before it goes for ratification and a final chance to have your say. We have 6 months to appeal so i'm just going to leave it for a couple of months and gather more evidence. Well done for today Kevin and good luck and let us know how it goes!
Haven't spoken to Beacon yet...got ramps finally installed today for Mums wheelchair at last! I'm giving myself a break from CHC appeal as it really took a lot out of me. I intend to set the wheels in motion again though and will contact Beacon. It just never stops always stuff to sort out every day!
Evidence for them is just a reasonably detailed report from the carer or a professional. So - "Liz fell three times this week" - From a carer is evidence.
No - that nurse has a philosophy degree and scores a magnificent fail.
I was offered similarly inane comments from the nurse today. They are desperate to protect their non existent budgets I guess.
I included how many times I prevented a fall, not just the falls. At the time, C didn't have any professional carers so they accepted my evidence. When they asked me how many times C fell, I told them they had asked the wrong question and it should be how many times would he have fallen if I hadn't saved him. I pointed out that because of the continual care I was giving him, plus all the gadgets, cameras, bells etc I had prevented scores of falls each week.
Jean your nurse is talking utter rubbish! You know that of course. If you have no CHC apply now. I left a lot of things until too late and ended up in a mess! If there is anything which can make life easier apply now!
Dear sweet Kevin, your week sounds like hell on earth!! The chc/ccg people (mostly) need a jolly good look at the 'real' world! Life with Psp is bloody hard and doesn't get any easier, ever!! Hugest hugs and well bloody done on standing your ground! Rest now, tomorrow is a new day!! X
Well done Kevin. You must be exhausted though. The frustration of dealing with people like that is unbelievable - and that's on top of the exhaustion of caring duties.
Will they take photographic "evidence" if you are on your own - date and time stamped? !! I held up my end in court against traffic design specialists with pics of clogged streets they said were not an issue!
You did well! Hope the outcome is good! Love and hugs to you both!!
The worrying thing is that the said review, if it had been successful, would have precluded the need for this DST.
The Nurse who did the review agreed scores and it was clear Liz was eligible. She ended up by saying that Liz was eligible, but we needed the DST to cement that.
This nurse assessor was unaware of the review only three weeks ago, but said that the DST is only required if the review found against Liz getting funding.
The nurse three weeks ago appeared very competent and experienced. An authentic person. So I can only imagine a desperate management in the background working hard to limit access to CHC funding.
As time goes by I am getting use to this continuous struggle for funding. If we are successful this time we face a review in three months time. I am so aware that if Liz becomes bed bound in that time her risks diminish and [aradoxically she may no longer be eligible.
Kafka has a home here I am sure!
A small post script - I keep notes... Part of my appeal will be the difference between the scoring of the two nurses only three weeks apart. Tomorrow I will type up the notes on this assessment in case I need to appeal.
We all fight these issues... Just another part of being a carer!
Kevin, why will Liz's chances be diminished if she became bedbound? Is it because of less risk of falls? I'm starting to think our next review will be around September but I believe because of memory and confusion that will rack up more points?! God this whole process is enough to finish us all off!! X
Jen I think that is a great idea! Everyone should get their cameras or phones out as soon as someone falls or does anything else for that matter! I used to phone the Ambulance service for help to get Garry off the floor! At least we had evidence? Didn't realise it added to the evidence at the time. I just couldn't help him up as he was too heavy for me. It was alright when he could help but when he got past that stage I knew I had to get assistance.
My brother's wife had MS and was a dead weight too. So he used to go to the gym to build his muscles up. I remember him saying it was lucky he was a man as if it was me having to lift Garry I wouldn't be able to cope. In fact he really struggled even though he went to the gym. He is in pain even now although his wife has been dead 4 years. So be careful lifting or trying to!
Kevin well done! I was going to swear just then but am biting my lip!!! Stupid stupid people! As you say probably trying to protect their budgets or as you say their non-existent budgets. Things are really bad but carers save them so much money to start with? How on earth do people who live alone cope with this? Makes you want to cry?
Liz sounds as though she is going down so you definitely need extra help. I never gave Garry a choice of food when he got bad as it used to stress me out so much on top of everything else. Luckily he was pretty good and ate whatever he got.
Fingers acrossed they will actually sort things out for you asap!
You had quite the day. You are so. right my care giver can ask my husband if he wants to be change or go to the bathroom before she leaves he says no but as soon as she is gone he tells me he needs to go to the bathroom. Go Figure. 😭
Poor Kevin, you are working so hard - I know the feeling of stress having just recovered from a 3 day breakdown, spending more time in bed sleeping. Fortunately we have a very good Carer for 2 hrs. daily who does everything. I know what you mean when the loved one has lost their appetite, and you try to come up with a tasty meal which, on presented, he looks at it with distain and says get out the sick bowl and put it by him. He tries the meal and takes about 3 mouthfuls. It is all dreadfull stress, but you are definitely not alone. Regards
Hmph. I thought I wrote to you yesterday, Kevin, but I don't see it here. So, congratulations on your standing your ground. I can at least imagine that the assessor won't be so cavalier about rounding down after this. You are a hero.
Afterwards Liz, quietly commented, "He's not very bright is he?" If he could only hear those words from someone cognitively diminished who could still follow the evidence he could ot.
Chuckles and Ouch!
We do OK - We seem to have entered the fighting season... Fighting for renewal of a Welfare Benefit for disabled (PIP), Employment Support Allowance, from which she get's nothing on the means test, but her State Pension contributions paid.
And a bit more... You know, I have had to upgrade my use of time and task management way beyond what I needed in my professional life. Albeit it now includes repeated tasks like "Sow lettuce" every couple of weeks... Laughing... must be getting old.
Wishing you the best and with great warmth for your time.
Hi Sue... a little way in I realised I was dealing with someone who did not understand the DST wording properly (second language and the nuances beyond him). So change of tack and I began to ask him to explain his decisions based on the wording / language. That is when he started to give ground.
I have little doubt that the standing instructions are to minimise scores.
This CHC funding should be equal and fair across the board, it seems to me that if isn't the case and I'm sure it can't be lawful. I am appauled by what I read on here and the stress and torment that we have to go through to get the support we need to carry on. I can't express strongly enough how angry it makes me to hear people being turned down for funding when others get it, how can that be! Sorry to hear that you had a rotten experience Kevin, the two ladies that did the CHC assessment were pleasant enough but I just couldn't tell what they were thinking, it felt like acrriving test and I took several of those before I eventually passed. Fingers crossed for you Kevin.
I'm not there yet but its appalling that we have such a struggle to get what we are entitled to... I always think there must be so many people who are not able to do that for all sorts of reasons.
I will fight my corner when the time comes but it is all so wrong !!!
Hi Jean - Thanks for making me smile, "off to the lettuces". Generally I find vegetables far more sensible that the CCG and their shenanigans.
I did a poll... 99 % of the respondents preferred dealing with lettuces than undertaking a DST. Though mainly I was polling snails and slugs. The 1% was our cat who did not understand the relevance of the question and asked if cuddles and fish might be an option on the next poll.
More seriously - I am totally angry too. The care system is outdated and on its knees.
Take for example the question in the DST about Breathlessness... It assumes low lung efficiency and the need for nebulisers. It does not recognise heart failure ?!! or the PSP issue of breathlessness which, to be honest, I don't understand either.
If that nurse had said, "She does not need nebulisers" one more time he might have been seriously injured. Four times I explained the biology, inefficient lungs, heart disease breathlessness and PSP breathlessness... Ugh!!
I like lettuces and the simple logic of snails and slugs, but more than then I like the hedgehog who visits every night.
It is hard to be heard when folk have an agenda where:
a) We are not professionals so what do we know.
b) Try to avoid giving CHC... Budgets are collapsing.
I have believed in the NHS all of my life... Internationally it scores top for cost efficiency and treatment outcomes. (Excepting cancer).
But this DST B*it is completely disheartening. I tell myself to keep shouting. Though I hate doing that.
I was talking to the new agency clinical lead last week. I was raising concerns about one of the carers who scalded Liz in the shower and wipes at the back first and then the front and seems incapable of learning. She replied that in all sensitive cases like ours they send the best carers. I chuckled all morning. Sensitive cases means bloody difficult carer who knows the score.
Yup, for once in my life I am pleased to be seen as B' difficult.
Grump Grump... Jean you do a fine job against all odds... I know form your posts that you are up to speed and stand your ground.
Respect for you too. Chris is progressing more slowly than Liz. I'm not sure thats altogether good as the budget gets tighter and tighter. I am accepting that we will be paying more.
I had a run-in with the Parkinson nurse last week. I get fed up with feeling patronised - "poor little carer ". Talking to me as if I'm daft.
She questioned my use of "coping ". I said every one in my position is just coping - whats the alternative ?
She then started carefully suggesting "other options ". I'm a straight talking Yorkshire woman so I said [ straight faced ] Euthanasia ? She was so shocked. I couldn't stop laughing. So did Chris - best laugh we'd shared that day.
Then she said to Chris, " Is Jean looking after you well ? - yes or no ?
I laughed again because I knew what was coming. If he is given an option he always parrots the last one.
I think she was glad to end the session !!!
Hope you're having a good day, Kevin and love to Liz
Jean don't be seen to be coping too well as you will never get anything from them! It is totally disgraceful.
Nobody tells you what you are entitled to and nobody helps apart from the great people on here. If the public at large knew what happens they would be shocked beyond words!
The problem is nobody knows all of this? It makes me want to cry.
Reading your posts again. When Garry ended up in hospital he was put on a nebuliser! However it did make me wonder if he should have had one before! He was on oxygen when I got to the hospital. So I guess it depends on the medical care someone is given beforehand? Don't worry you will get through all of this in spite of the CCG!
Love to you and Liz and hope she is alright at present? Hope you are too?
Kevin how are things? Have you been able to take a breath? I really hope so. This is such a living hell for people with PSP and their carers? Not made any easier by the so called system?
I keep thinking I didn't do enough. I don't know how I could have kept Garry alive and that is why I beat myself up. Stupid? Don't know how to stop thinking like that though. I wish I had found this site earlier that's for sure. I would have been able to get more help earlier.
I don't think I do enough really. I wonder if any of us do.
Things are going well for us at the moment, but Sometimes I just force myself from one task to the next.
I use a 'management' task / time management tool. Mainly to keep track of the myriad of loose ends. When I finish a task I tick it off and get on with the next one. Often it is just will power and the fear of not getting up if I sit down.
Yet Liz seldom get's into town much and she misses that.
There just aren't enough me's to do it all even with carers.
Don't be hard on yourself. I know when this is over for us I too will wish I did more.
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