Had a big row today with some silly little jumped up jobs worth, from social services!!!
I need extra help with S! Let's face it folks, when you admit that, it's already six months too late! I telephoned the care agency , who are providing a sitter service, she laughed at me, saying they were totally full, though could provide someone to come and get S out of bed and shower him at 11.00am ish!!! a couple of mornings. Said this was no good, so phoned SS to see what to do! Stupid move I know!
This extremely unpleasant man, just took an instant dislike to me! My sister has spoken to him in the past and he said he was waiting for her to get back to him. They want to do another assessment on me. How many times do you have to be assessed before anybody believes you need help? I told him, I did not need assessing, just the name of a company that would be able to help me. Insisted that he would come and see me on Friday. So I said bring your bucket and mop to help me shower my husband, or don't come! The cheek of the guy, then said phone back when I wasn't upset!!! Will he still be in post in 10 years time or what?????
Sorry, but can someone tell me, how to be happy, cheerful when telling powers at be, that you can't cope and you need help?
So I am now left, with no help and nobody to turn to, what do I do?????????
Yes, I will report this guy at some stage, but for the time being, I need to conserve my energy, to get through the day and try and fight to get the help I need. But again, who do I turn to?
I am trying soooo hard to keep calm, accept things that are totally against my nature, but HOW do you deal with jumped up twits like this?
Lots of love
Heady
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Heady
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hi heady I can understand how you feel with this jumped up twit your words not mine mate you probable upset him telling him to bring hes bucket and mop with him matey hes probably never been spoken to like that mate hes been treated with kid gloves on I expect i had one acassion when they put my money into the wrong bank so off I went down there and saw several people before being fobbed of to some young girl who said to me do you think you could have spent the money already and not known it well I was absolutely furious I will not print here what i said but the air was blue so I know how you feel I know I haven't solved your problem but i just wanted to let you know that you were not alone with it I never got an apology from them either to say that they had put it into the wrong bank mate stupidity at its best but we all make mistakes don't we
Hi Peter, banks are no better in Europe. I was working in Holland and made regular payments via the Dutch bank to an English bank to pay a UK mortgage. Somehow the money got lost and I received a letter from the building soc. telling me I'd failed to make a payment. Both banks instituted a search, each blamed the other and both charged me for the search!! Hey Ho we live in a nutty world, but it's fun if you don't weaken.
I enjoy reading your posts, your sense of humour serves you well; it can't be easy.
quickjel hi mate how yer going ok I hope well don't that beat all nobody wants to own up to anything these days do they mate its just as well that nobody wanted to foreclose on you I think the old days were better and I think ive had the best of them for a mile of things just small things like giving your seat up in the bus nowadays I reckon they would watch the bus go over the top of you maybe im just getting old and cranky . thanks for your mail by the way matey . Am I talking to the carer or someone who has psp I have only had one conversation with another psp person I can't be the only person that has psp and can type with one finger, can I matey I hope not , ah well I will say see yer mate take care and thanks again for your mail and if you are the carer I say to you that you are doing a bloody fine job and if you have psp I will say to you take each day as it comes mate and enjoy it and HANG IN THERE peter jones queensland australia
psp sufferer and grumpy old man ----------------------sometimes -------but not all the time see yer matey
WELL THANKS MRS AVB JUST TRYING TO LIGHTEN THINGS UP A BIT ON HERE I KNOW THATS WHAT WE ARE HERE FOR NOT TO HAVE A LAUGH BUT YOU HAVE GOT TO HAVE A GIGGLE SOMETIME OR OTHER MATEY OTHEREWISE YOU WOULD GO BONKERS WOULDNT YOU WELL I WOULD..... SEE YER MRS AVB TAKE CARE WONT YOU PETER JONES Q.L.D.AUSTRALIA PSP BLOKE
Indeed. And giggle I did. I also related to the knee high lawn in my yard....The nice man across the street mows it FOR FREE...just cuz (just cuz I don't think he likes seeing knee high grass ...but whatever it's more blessed to give than receive eh,,,,so I guess I gave him the blessing eh?) hahaha
But yes, there are alot of agencies and churches who will help us so be on the look out, Easterncedar...banks may not be one of them...
I remember when they screwed up my young daughters acct. I drove her to the bank where like the rest of you, she was ping-ponged around until finally she asked to see the president. The little girl behind the desk nervously rang(?) ...ringed(?) rung (?) called him from his office high aloft robbers and the common man into the hands of my daughter! She, with a lawyers two-edged tongue, began to make arguments as to how this mistake was on the banks and NOT on her account....The president, in full amazement sat and listened to this little girl (she was 15) and at the end, sat there for a moment trying to catch his breath, could say nothing more than, "I see, we will make those corrections right away.....and we will put $10.00 in your acct. due to your inconvenience. And may I add, you will make one heck of a good lawyer, look us up when you graduate college! Then he looked at me and told me what an amazing daughter I had....I smiled and acknowledged that fact and we both floated home in victory!
Now if I,this craggy old lady, tried to argue that point, I would be easily twisted and tangled by their words until I owed THEM $10.00 hahahah.
I must say this argumentative nature of my daughter's has usually been to my detriment....I never win and I usually end up feeling like the child.....hahaha oh well stick to the weather!
Hi Peterjones, I am a former carer who found the only source of information in Britain on PSP was the PSPAssociation, this site wasn’t in existence at the time. I heard about it because, some time after the death of my wife, the PSPA were looking for volunteers to man their helpline in the evenings. During the training we were recommended to look at this site. I only wish it had been available when I was looking after Margaret we would both have benefitted a great deal. But that’s ‘water under the bridge’ as they say.
I agree that we were a very fortunate generation, there was plenty of work and education was of a high standard and free. I agree manners were perhaps more generally in evidence when we were young but that may be due to a failing memory!! In fact earlier this year a young lady offered me her seat – I must look more ancient than I realised. I was studying flight information in a departure lounge to see if I had time for a beer before the flight. Rather than seem ungrateful I accepted her kind offer but had to miss the pint!!!
Well it’s now 02.00 in the morning and time for bed. Take good care of yourself, and try not to bounce off the floor for a while.
hi quickgel well mate thanks for your mail and i am glad that the age of chivalry is not dead then if someone offered you their seat at the airport matey
a young lady as well thats great mate its put back my faith in human nature its the young schookids I was on about mainly from colleges from around this place the get on a bus when its crowded and stick there bags all over the floor and then grab a seat if theres one available and ive seen pregnant women standing and these young fellows all skylarking around sitting in theres I mean if they don't get trained now for a few manners wheres it going to end or maybe im just getting old and cranky mate but I do like it when someone puts themselves out for someone ..some bloke said to me they are only kids but some of them were taller than i was ] and better looking] but seriously i did think that they should be taught at school or at home thats where it starts from see yer mate have a good one peter jones queensland Australia psp sufferer sorry that you missed out on your pint mate maybe you can make up for it another time at least you got your seat matey
Oh Heady. You are so often the person with the cheery word in need. I would love to be able to do that for you, but sometimes nothing but delivering well earned dope slap across some numb skull seems like it might do. I HATE asking for help because it's so painful to be let down. I try to keep my expectations VERY low, so to minimize disappointment and humiliation; my usual mantra going in is to say that I'm going to ask so at least I can tell everyone who imagines he or she is helping when he or she tells me to ask for help from whatever agency that I've done that, so there. At least I'll stop that line of chat!
Of course by the time we ask, six months too late, as you say, it's hard to be cool about anything.
I've just spent the last two weeks going round and round with the local home care provider. Each of the visitors is very nice, but there is NO coordination among them and none with me. They call my work at night after I'm gone to set up appointments for the following morning, and want to come at a moment's notice, as if we can pivot to their plan on the spot. they keep telling me we need a new certification before insurance will pay for more services, but can't agree among themselves who is responsible for that, so we've had no therapy for two weeks. I have begged them to give me just one day's notice over and over, and the therapist today thanked me for suggesting that, as if he'd just heard this for the first time, not the seventh. I ask them to talk to me, not to count on my sweetheart to keep track of the messages and their schedules, and they forget that every time. Who has the memory problem, I wonder?
Oh well, today my guy had a bladder biopsy and electric abrasion, and he is tired AND agitated, won't settle down so I can mow the lawn, which has become a jungly disgrace, conspicuous in the neighborhood.
I better throw myself back into the fray. You aren't alone, Heady, and I guess that's all I have! Love, ec
Why Heady? why are these people doing this job? I know why . When they were in college they had this belief that they were going to help others through social services.....then they got the job,, and all they met were others who were worn down, haggard, who had lost that belief that they could change lives, maybe even save lives! This new perspective in turn wore down the new employees' excited new thoughts about the rest of their life and they just began to push the papers and wonder when the heck 5pm is!
Unfortunately for us, we have to deal with the worn-out Waldos who tell us to be nice to them while your mate is dealing with more than the loss of his dreams....damn.....and the only thing I can do is to keep plugging on. They will finally hear you. See 6 months is March.....well good news is spring flowers will be in bloom.....You can see I got nothin baby...Good Luck
easterncedar and mr c hi mate how's it going don't worry about your garden matey or the neighborhood they don't pay your rates for you or electricity or gas do they ..>>>> if they don't like it they can always come and mow it for you ,,,,,,,,,,,,,,,,,,,, can't they !!!!!!!!!!! I know its easy for me to talk because I get the churches of Christ you ring them up w=and someone comes band cuts it for 7 =dollars yes I did say 7 dollars mate
which is great for me and they do other repairs for you as well they pay the call out charge for you so if you need anything one its pretty good because the call out rate is pretty high here in aussie well queensland mate they are a charitable mob and do small jobs around the house for a minimal fee like smoke alarms and tap washers and well anything that's small anyway there great even though I dont go to church well mate I will leave it there otherwise they will want me working for them as a salesperson or advertising or something so see yer mrs C AND MR C
take care as always your friend peter jones queensland Australia psp sufferer
Oooh, what a great service! Maybe I should talk to the local congregational church (I used to sing in the choir) and see if they mightn't want to do something like that...Great community service!
hi ec I also was a choir boy with a cassock and all the gear that went with it mate peter jones queensland Australia now I can only manage a sqeak or two I would like to send you a copy of the cd I done in the year 2000 but I don't know how there are some good songs on there mate some from les mis phamton of the opera unchain melody my way love is a many splendored thing bring him home and a few I cant remember now so there you are you don't need the cd now do you mate see yer ec and mr c take care as always your friend peter jones q.l d. australia
Where do I begin. I have been forcing my way through this for several years.
Do you have a social worker? When my mum was still in the home we got carers 4 times a day through the social worker after mum had been in hospital. After a near fatal fall mum never came home again and she went straight to a care home. She was subsequently neglected in the care home as her condition worsened and they were not up to the job shall we say.
We have a review team who are on my fast dial! To cut a long story short we got mum continuing health care and one to one care in the care home from 10am to 10pm. This was a lengthy process mind. Its been an upward battle with many nasty situations and uncaring people along the way. I have become so hard and so focused I could now take on anyone or any situation, hold my own, win the argument and get what we need.
Do not give up persist and do not let them get you down.
We all wish we could help others sort things out, but often the best we can do is "listen" and sympathize with you. I never had to deal with this because, in this part of Spain, there is no such thing as social services in the way I understood it back in the UK. You can barely get a GP to do a home visit. Even that involves a huge discussion, then you have to pick the doctor up after the surgery closes, then drive them back again, but it's at their discretion if they do it or not. They're perfectly within their right to say no.
Reading all the problems people have with getting others involved, I'm not sure if it's a good or bad thing that I knew I was completely on my own with this from start to finish!
All I can do is offer some hope. I've followed a lot of posts here, and many people have had the fight of their lives to get some help, but many have succeeded in the end! Keep the faith, keep your chin up, contact every single association or group that might be able to unite their voices in an appeal on your behalf, and keep trying, beg and cry if you have to, then dry those tears, say stuff the lawn for another day, and focus on what's important, spending as much time as possible with your loved one.
Try the local paper. That might get things going. Isn't it difficult enough to get through the day without meeting all these brick walls. Hope it all sorts itself out very soon otherwise you are going to be ill. You sound at breaking point, have you seem your GP lately? My heart goes put to you. Xx
I rang our social services to ask them for a reassessment for John sixteen months ago . they finally got back to me after a lot of nagging . he had been having two carers morning and night , They told me because I had been waiting for such a long time we could have a visit midday as well .
we are now coming to the end ,(at least I hope we are ) mod CHC assessment .that has already taken four months . you do get tired and worn down ,
just like you said though Heady , Ypu don't even ask for help for such a long time . I told them last time . You cure him and We won't need you .
Its so frustrating isnt it? Ring your doctor , make them realise that you are on the edge of a breakdown and complain about your treatment you recieved. You deserve better than this . Sending hugs. X
Oh Heady, so sorry for all the hassle you are confronting. You have had many a cheerful post to help us in the past. Now its your turn - I would definately pressure your GP to get this help you need. Does your hubby have a Neuro Consultant - his secretary maybe able to put pressure on to, also Physio? Are you in contact with Compass Carers? They do an assessment - yes I know you have had some in the past - this is different in that it assesses you and your needs rather than S - that means they will understand what you are going through and are placed to help get that help. Hospices sometimes are well placed to know people we 'carers' cant know exist. You should not have to go for a private person that will cost the earth! Recently I lost my Social Worker and now talk to the Duty Team, however have been really lucky with the people I have spoken to - especially with the recent turn of events. Is there a monthly meeting of carers in your area - I have just joined and the wealth of their input and info is stunning. If you need further help or want to put more on the forum you must do so for your sanity - getting it out sometimes helps each of us and there are people on this forum that can usually help too. xx Take care
Hi Heady sorry to hear of your dumbo social worker, he needs a kick up his pants so complain to his employer and if you do not get any response up it to local gov ombudsman. Also it may be worth contacting CAB, to assist in complaint. Local papers are also good at getting responses if you can get them to listen.
You sound exhausted and in need of assistance not flim-flam, What would they do if you have a breakdown and are unable to look after yourself let alone S? You need to get back to your GP and ask for emergency help. It is not easy to ask for help again after being confronted by officialdom but you must.
Try to relax and give yourself 5 min, easy to say but not easy to do, I try some tai-chi breathing exercises never finish them but they stop me shouting at M (sometimes).
I second the tai chi recommendation. When I get to the weekly class, it's bliss, but the breathing whenever I manage helps so much!
Hi Heady, Fully understand where you are at and the stress this is causing. The way I approach such issues (because I am rather bolshie) is to ring these people back and ask them to spell their names, once we have achieved that I ask if I can speak to their manager. If that request is refused I ask for a copy of the complaint procedure - if they try and offload me I then ring the office of the Chief Executive and have a go at his/her PA with a mention of the name of the local paper. I know it doesn't achieve much (I haven't got anywhere in my attempts at funding) but at least it makes me feel a little better for a short while to know I've spoilt their day. I also sent a Tweet to Ian Duncan-Smith to ask why, if carers save the NHS £M, they are paid a meagre allowance and not given equal pay to NHS workers - he doesn't seem too keen to respond!
Chin up and I', sure there will also be ups amongst all the downs.
Oh Heady how your post rang true for me this week! I have had a few awful days of jumped up little know it alls trying to dictate to me what I can and cannot do, how best to walk with Keith and look after him. They sit behind a desk all week, don't have a clue what our caring involves, try to lay the law down when they've never done any caring in their lives and frankly I am sick of it! I feel like saying I'll swap your life for mine and see how well (or probably not) you cope with my role.
At the end of the day there's hardly anyone who understands apart from us and I'm so glad I found you all, I'd probably be crazy by now if I hadn't!
Take care of yourself Heady, I don't like to hear you're down😔
Oh dear Heady, you`ve got one too ! Absolutely useless office bod with no real experience of life - or anything else probably. I have only spoken to `our` social worker twice, both times in 2014 and because we are self-funding, the ONLY advice she gave was to sell our home and move into sheltered accommodation, or let our home so that I could move back `later` if I so wished or find a care home for P.
I have restrained myself from using language I would not normally use !! As to how to deal with twits like these, I`m sorry, I haven`t found the answer yet.
Hi, I hope everyone who replied to me, reads this!
I would like to say huge thank you, to you all. I am fine, just trying to get things in place, before the next crisis! S has been in free fall for a couple of weeks, but "touch wood" has now plateaued! But it made me realise that I do need extra help. Why, if you try to be pro-active, people poke you in the eye, or you have to wait to crash, before anyone takes you seriously!
I have been to a PSP meeting today and lovely Jane from PSPA was there, so hopefully, will be able to help me, in my quest. Which I now need, as Quickjel, forgot his mop and bucket!!!!!
Wish I knew what could be done, to stop this sort of thing, happening to us all. Why we all have to get down on our hands and knees, to make it easier for them to kick us in the face. In this day and age, especially as all these companies are private, why is it so difficult to get help. I know we don't help ourselves, because we leave it to late to ask for help, so when you do, its urgent. Perhaps that's the answer, we should have started getting help in place, two years before symptoms kicked in!!!
My next challenge, is getting a ramp put in place. TODAY! S has something wrong with his foot, so getting him in and out of the house today has been very hard! Anybody know of a good builder, who works overnight???? Didn't think so! Things don't get easier do they?
As usual, I'm a bit late on the scene. My heart sank on reading your post but you always bounce back. You are an inspiration but I feel so angry that that is the way things have to go. We are in a trap, as we look after our loved ones, aren't we ? If we were able to leave them to suffer something would have to be done.
Gosh, thanks Jean! I'm not an inspiration, not even known for my words. Just a person like you, and everyone else, that has had to learn, "&@&£&" fast, the hard way, how to cope with the "not very nice" life that has been thrown at us. I have learnt, that I am a control freak, that I don't suffer fools gladly and I can not stand needy and wanting people, which I have suddenly become. This part of our new life, is the hardest to come to terms with. I never, ever considered myself a positive person, always a half empty glass. Now, well, I can't stand any negativity! Despite my constant moans on here!!!
I am in a fairly good place at the moment, just trying sooo hard to stay there, but it doesn't seem that the powers at be, will let me!!!
Oh well, as we keep saying that's what wine is for!!!
I have to say that the most help we`ve had ( apart from home care in the morning and day care - both of which we pay for ) is from our OT. She comes quickly if I ring and ask for any equipment, for example I told her that I couldn`t get P out of the armchair ( this was several months ago ) and by the end of the week we had a riser chair delivered ! In fact she has offered things that I have had to refuse, a hospital bed for example, because we have nowhere to put it without major upheaval of the house. She also got a wheelchair delivered within a week whereas when I requested one in December, to say I was fobbed off by a jobsworth is an understatement - so much so that I went out and bought a second hand one.
I really appreciate her help but I suppose she is only doing her job ! I think we become grateful for any small crumb of comfort or help from anyone because usually we have to beg for anything from everyone !
Our ramp was installed by one guy in just a day, so it can be done! It was arranged by our federal veterans administration; I can't vouch for anything from the private sector. It is aluminum, and much more solid than I had anticipated. ( my guy's foot has also gone funny, and he really trips over it these days.) Good luck. Ec
hi heady if your problem hasn't been resolved yet I would go to your member of parlarment for your area mate and have word with him or her about the state of things or theres your omwordsman I don't know what they call them where you are mate a bloody nuisance I expect !!!!!!! hope this helps in some small way mate peter jones queensland australia psp sufferer
Hi Eddie, we live in the UK! Thankfully, the government have now agreed to fund S's care. Just waiting to see if they can find staff, to fulfill the care plan.
What part of WA di you live in. I have an uncle in Freemantle!
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OMG!! Found my guy on the ROOF! 
