Gordon Rutherford said:
No you are not being Daft, I have lost count the number of surveys I have filled out as a Carer it is tru what they say ask the right question you get the right answer, not the correct one tho' I am asked rarely and "how are you"? knowing that they are not really interested and only to be pleased that it is "not them" After our usual visit to our General Hospital today, we felt it was nescessary to discuss the matter with our local GP, nothing available for 3 weeks, that about somes it up
Jill D said:
Some years ago I did a research project about information, reading the various posts on this subject and others, the project came back to mind. I had found an inconsistancy in opinion between disabled people and authorities as to how much information they had to get on with their lives effectively. The disabled said it was a nightmare with little help, those who were paid to help the disabled told me how much information they handed out and felt that they did well. I asked those in authority to send me copies of all information, it was a revelation. A literature review quickly highlighted part of the problem, almost all the information was out of date (issue dates printed on back of booklets), if memory serves me correctly at least one was a number of years out of date, the information not totally useless but pretty close to it.
My conclusion was that a pack should be compiled in a format which was easily accessed with the ability to update easily. My thoughts have been erring towards this when i read all the posts, lack of support/information seems to be a major stressor - it is for me, I can research it but it takes up valuable time which can't be spared in time of crisis. Gail's post just about said it all. Add to that the urgent need for information and the situation becomes untenable. I feel that a 'Welcome Pack' (sorry, sad attempt at humour, it gets us all in the end) should be available to carers.
Information and access to emergency supplies - what i feel I needed was a supply of half a dozen jumbo sized pads to deal with Cdiff (before we realised we were dealing with something serious), try to find suppliers in an emergency, not easy, the ones from chemists aren't big enough, I eventually found the local health centre had a couple of packs hidden away in a store room. I would have welcomed a couple of pads to get us out of trouble and the name of a local supplier, it just wasn't there. A specimen bottle - how many times have we been told to bring a specimen to the surgery which is located several miles away. A disposable bed pan when the GP did a telephone consultation and wanted to know what 'it' looked like. A blank form to fill in with ailments and treatments which can be updated constantly when the GP surgery isn't open or out of area. Web addresses of help web sites - medication & symptoms, the nhs web site isn't as good as it could be in moments when info is needed.
I could think of other things to add to the list, this is the moment I get super stressed. sponsorship of individual elements could be welcome, I welcome names of suppliers. I think what is needed is along the lines of a Filofax for carers which can be infinately personalised. it would have a secondary use too, there seems to be an outdated idea in healthcare/paid carer circles that if you hold a file it makes you superior (sad but true), I have had people walk into my home with their files & bits of paper brandished like a shield telling me the biggest lot of rubbish imaginable. Lets be professional carers, in the Selfish pigs Guide to Caring a case is made that we are professionals in our own fields, bring out the Carers file, would also be invaluable if we weren't around for any reason.
If I ever get time i will make up my own, downloadedable templates would be welcome. Does anyone else have any thoughts, am i being downright daft?
You made me laugh with the "how are you" statement, have you tried answering them with exactly how things are? How quickly did they change the subject? They dread me walking through the door these days, I won't let them off the hook easily, people are paid to do jobs so do them they will!
The survey question is interesting, I saw that 'Them' (the name by which certain departments are known in our house) published the results about how wonderfully satisfied carers are in their area, i am not a happy carer and hadn't been asked so I had a delve around to find out how Them carried out the survey. It was a survey of service users who had actually got services, what it meant is those of us who Them certainly do not like would not have been included, presentation of results did not clarify this.
Am I alone in wondering where all the funding goes? After more than a few years of less than happy dealings with Them, some very nasty things happened to my family and Them went into bottom covering mode, we were forced to deal with a dept of Them who we felt very uncomfortable with, we felt threatened but pushed back hard enough that they started to offer us all sorts of things. What did dad want to improve his appalling quality of life as a prisoner looking after mum? What did I want to improve my appalling quality of life looking after them both? A whole bunch of carrots were dangled in front of us then, over a period of weeks, the bunch of carrots reduced in size considerably until only a few withered green shoots were left with the statement that funding could well run out before anything was approved. What was the end result for us - nothing. What was the end result for Them - lots of hours of wages, car user allowance, payments towards a comfortable retirement that I won't have.
Would the government have the guts to ask us ALL what we get and what we don't, I don't think they could, there would be a national scandal. Someone would be bound to present a set of figures which suggest it is all our own fault, in the past i have felt that I am considered a dole scrounger when in fact I have done everything I should to work towards a carefully considered retirement only to have the rug pulled out from under me and see everything I had saved for drain away. My skills count for nothing except writing letters of complaint, am I depressed about it? No, but I am damned annoyed.
I forgot to add in my previous post about dates of information, I tried to renew the Blue Badges this week, Guidance Notes were a bit of a fiddle to get off the main council web site, much easier to use a search term in Google, got straight there. Had a letter back saying things not filled in right, back to the Guidance Notes. I found 2 or 3 versions available, all different years, aren't people paid to get this right? Someone want to pay me to search the internet for anomilies in documentation - pay me per find and i wouldn't need to claim Carers Allowance maybe!!!!!!!!!!
I did try once, I threw into the conversation that I had twisted my shoulder lifting the wheelchair out of the car, I saw the eyes glaze over LOL, I was tempted to say I must buy a new file to sharpen the chemo needles but thought better of it! Now that did relieve my stress for that day I walked away smiling must be my sense of humour.
Thank you so much for that Jill, of course you are right you shouldnt worry about the small stuff. I think it is a genetic thing, all my family are the same.
I try to make time for me but just never seemt o get it so I am now putting 'date tiem' in my dairy so when a social worker or somebody calls then I look in my dairy and say no I am buys at that time/day. This is a very new venture for me so dont have any feedback on it but will give it a try. I have just booked a days course to go on with my daughter 'Cupcakes and mini wedding cakes'! My daughter and i dont get much time together, she works full time and has horses to see to then add in my commitments and it is difficult to see each other. She is one of my 'dates' we are going to go for lunch once a month and I will arrange for my husband to be here for our foster children coming home from school that day.
I will contact the Action for family carers, anything will be a help I am sure.
I love your furry lawn mower, I surely could do with one of those, we have muntjac but not as obliging as yours although we did get a small herd of escaped goats once!
My love of wildlife and birds in my garden helps with the stress, we have just had a conservatory so now I can escape there with a cuppa and watch the birds feeding or sitting on the lily pads having a drink out of the pond.
Thanks again and hope you get a good nights sleep, I slept all night last night from 11.15 to 7am the first time for I dont know how long, many months anyway just so lovley to wake up and see it is morning.
Jill D said:
Contact Action for Family Carers, they have advocates who fight your corner, since social services were introduced to our local one they have left us alone (for the moment), before that they were acting despicably and yet were offering nothing. A social worker remembers the discussion saying something that I did not remember, a call to the advocate confimed that she didn't remember that conversations either therefor either 2 of us has memory loss or someone might not be quite as correct as they could be.
I think that one of my ways of trying to reduce stress is not to care too much about as many things as possible, just stick to the basic needs and anything life threatening and try to recognise positives no matter how small. My garden has got totally out of control, I don't like that but it isn't a life threatening thing, keeping family together is. Neighbours and passers by don't like it, they don't offer to help, so tough, they have no right to comment, they may be wealthy enough to employ gardeners, we are not. I looked out of the window just now and saw the muntjac is back, rather than get annoyed about what is being eaten I thought 'whoopee! furry lawn mower! don't even have to put petrol in it!" I think I'll just call the garden a wildlife sanctury, which it is, anyone who says anything will be directed to the muntjac - either that or I direct the little furry lawnmower towards their garden ;)
Seriously though, lack of sleep is the killer, you are very right, last night we had shouting most of the night with mum's dementia, I had to get up 6 times to try to deal with the constant requests for the toilet. She is now concerned that she must be unwell as she is so tired, no memory at al of last night, meanwhile I am supposed to struggle on.
I am a Carer to two boys with a rare chromosome deletion, i find since giving up work that my stress levels have increased to such a point that it is affecting my health. The local council do not listen and alway put us down and say its down to our parenting skills. They are not in a carers position and can walk away from their duties every day and perhaps take a day or two off in line with EU laws and working times. Caring is 24/7 we do not get any time off. I would like to challenge any MP / Council to come in and do our jobs for 1 day.
I think you are 100% right, sometimes i have wondered if social services gets some kind of performance bonus relating to how much money they do not pay out. It is the relentlessness which is the killer, not a minute to ourselves 24/7, even if you aren't actually with the person/s you still worry about them, it is inhuman and cruel. How easy it must be to say 'bad parenting', maybe they have got funding to put people on parenting courses, it keeps a few of them in a job. They always seem to have nice cars, good clothes, often mentioned their hobbies, pets, holidays etc. None of it cheap, I am amazed how many go to the West Indies and USA, can't have holidays like that on a low salary, they also have local govt pensions to look forward to.
The problem with challenging MP/council to do your job for the day is that they would manage it easily, they know it is only for 24 hours and they have a future beyond that, carers are stuck, life is a bit like Mobius strip where we keep travelling but never escape the loop, Groundhog Day at least had an end with a variation each day.
The problem is that, if you verbalise the level of stress and how ill it is making you, it can put you in a difficult position, you leave yourself open to be a neglectful parent - 'parenting skills' more than a bit suspect, you never know what they write in the files - I have seen the notes relating to our family, the lack of accuracy verges on a work of fiction, I was shocked then i found that inaccuracies cannot be removed, it is there forever, it shocked me even more.
If you tell them about health problems I do wonder what happens to that information, no help is forthcoming, what gets written to justify why your health is failing and nothing is being done?
I do wonder how these people can live with themselves, a small amount of 'help' at an early stage would stop a lot of the stress and probably save the carer from long term health problems. In our case we were sure a dementia day centre existed, social services denied this, mum needed socialising while still being at home, we didn't demand 'our rights' or be nasty, simply wanted information. Eventually we located a centre, opposite the SS offices, it would have been £55/day for self funding (we had enough of ss behaviour by that time and wanted to know if we could pay ourselves), I spoke to a social worker who allowed me to believe that it would be £55, which is a lot of money for a lady who couuld refuse to go or just fall asleep. I found out a couple of months ago that it could have been £10.50/day if social worker had said we needed a break from 24/7. If we had known that then mum would have been sent there without a second thought, as it is now we are struggling on with my health being affected by the stress which could have been partially avoided.
What I feel is needed is a review by a senior govt official into where all the funding goes and how all carers are effected, a serious review could be easily carried out, it would cost money but in the long run allow targetted funding and not just paying salaries. The govt knows who gets Carers Allowance, find out what 'help' they get and then compare it with the funding that has been put into that area. It is easy to produce figures which say £X has been given for XYZ and that equates to every carer getting ABC, but those figures never say that all possible carers have been reached, there might just be a Black H*** somewhere which the govt could plug and re-allocate funding at a lesser, but more effective and fair level. If I was asked how much 'help' I had received from Social Services, the answer is that in the 6 years of getting CA (plus a few years before that without CA) I have had £0 but a lot of added stress and grief which could have been avoided.
Sorry to hear that your stress levels are so high. I hope you find this forum useful. As you can see from Jill's response, there are lots of people in a similar boat for you to discuss these issues with.
Some areas you might find interesting:
Let me know if you have any questions about the site.
In all spheres there are fashionable buzz words or phrases which are used to describe what, or part, people do as their job. 'Signposting' is the one that comes to mind with Social Services in this case. They should signpost you in the right direction, you have asked the question so why aren'st they signposting you?
You are doing the right thing, social services would, hopefully, land on you from a great height if you were doing wrong such as neglect, so why aren't they helping you?
If you were really worried about this you might just think about appealing for help to the Team Leader or Manager. I am sure a well documented conversation would not be ignored.
Particularly if you mentioned your conversation with the Princess Royal for Carers.
I have appealed in the past and it has got me no where. Social Work have said they are there for the interest of the boys, and the family. They are not taking us as carers into consideration, and this is another reason why i am getting so stressed when dealing with them, as when ever we want a service it is for the boys. As for signposting yes i agree they should be pointing us in the direction of services, but they are not. Our social worker everytime i call says "oh thats not my field i will need to find out" its not got to a point where i am saying to her whats the point of you even being involved?
A bit weird, isn't it? Makes no sense whatsoever.
Are you expected to leave a child with a person that you do not know?
Have you tried Crossroads and Surestart? They must be able to signpost you, at least your story about the social worker will go further. Have you had a Carers Assessment?