I have just had a huge row with A decision maker at the disability offices. I recieve disability living allowance and I used to get a care componant but it was stopped because they said I dont need help during the night (??????) . I wrote to them and said RA involves a lot of joint stiffness especially at rest and i also have a nerve problem in my elbow that affects my grip. I cant get out of bed myself and my medication makes me thirsty so I am up and down all night either drinking or having a pee. I also need pain medication during the night or help just getting comfortable.My needs have never changed they have only got worse. My husband helps me 2-3 times a night every night. The decision maker said "if you needed help 4-5 times we would award it to you. I can appeal but I have done that before when i eventually got my disability and it was the most degrading thing I have ever done. The questions they asked me were irrelevent to my disease. My Rheumy also sent a letter saying that the use of my hands for gripping is almost non-existant and that the disease is very active so I do need a great amount of help especially at night.Still they denied me. I think with out actually saying the words they are calling my DR a liar. Sorry I just need to vent.
you are able to type a really long thread at 3:18am- are u truly as bad off as you think? A caregiver at night seems excessive to me.
Pincushion, I can't believe that help 2-3 times in the night doesn't qualify you for a carer but 4-5 times does! How do they work that out?
Emma, you have jumped the gun. Pincushion, like me, is in the UK and posted at 10.18am GMT. Even if she had posted in the night that would only tell me that she couldn't sleep and was more comfortable sitting at the pc than lying down in bed.
btw, I posted at 11.53am gmt
There are times I can not sleep and I will wake my husband to take me for a bathroom break, or help me turn over if I'm stuck, or take me to the PC since I can't lie down anymore and if I'm going to sit up I might as well vent and see if there is anyone else out there in my situation. Sometimes I get to venting and since I have to type slowly, I'm here for a bit. But that doesn't mean I don't need extra help so my husband that works 60 hours a week can get some rest. Sometimes meds like Prednisone keep me awake too. And it is quiet at night so it's a good time for me to catch up on posts or my blog. Or do admin stuff I have to do for the board I co-admin at.
Just because we are up doesn't mean we can't type something. It just takes us a while longer.
I have RA too. I know how it hurts to get out of bed. But I still think an around the clock caregiver is excessive. That care should be reserved for bed bound patients (being turned every 2 hours, etc.) Pin Cushion does not sound bed bound to me as evidenced by her ability to type and stuff.Emma, you have jumped the gun. Pincushion, like me, is in the UK and posted at 10.18am GMTI understand the time change. It doesn't change my opinion.Pin - If you can't get the caregiver
I know a standing pole wouldn't really work for me, my hands are useless for gripping, I'd have to hook my elbow around it to stand. The handi-bars don't work for me either because of my hands and weakness in my wrists. The standing walker might work, it would give me something to lean on.
I don't know what might work for you. I hope you find something soon! When ya gotta go, ya gotta go!
AbleData is a great resource for assistive technology: http://www.abledata.com/abledata.cfm?pageid=19327&ksecti onid=19327
emma, you are so far off-based. Typing does not mean that someone can get out of bed on their own. It is exactly your kind of attitude that we are fighting all the time when we are trying to get help. Let's hope you never get to that point of disability to have a bit more understanding. Your attitude is just cruel.
It seems to me, pincushion, that they wanted to deny and automatically picked the level just above your current one. It's too bad you cannot talk to a supervisor (well, can you?). It was a bonehead decision and you know it.
In the meantime, is there anything like we have here, a Senior Citizen Center or Centers for Independent Living. We also have Long Term Care Providers? Sometimes these organizations and even churches will step in and help fill that hole.
I'm really sorry that they did this to you.
Emma, I am unable to wipe my own ass in the morning.. Does that mean i can't type at 2 am??With all the new adaptive computer technology, pin could have been using voice response. In respect to Emma, I see your point that if pin views that she needs 24 hour care then she assumably would not be able to type.
RA effects everyone differently, I think that has been well addressed on this board both in the past and recently. There are times when I can barely stand up to walk and toss and turn in bed, and other times when I feel ok to take the trash out and maybe even shop a bit. This is the nature of the beast. I too have been known to be in so much pain that I cannot sleep and can barely sit up in bed and at times.Sometimes, I do go to the computer at night and providing this old piece of junk can muster up a connection to the internet I read and will post...one keystroke at a time on some nights, other nights I can type for a bit till my hands hurt so bad I wrap them in ice, then in heat.
Life overall has not been fare to those with this disease and it teases us so with some days it being a good day and yet other days we can barely move. Most of the time we are ill due to the meds.
I am sorry that our sytem is not always there to help provide for so many of us when we truly need it. I am sick about the fact that our tax dollars are not protecting us medically in our darkest hours.
Emma,
The "care component" that has been withdrawn from pin cushion is not a carer or care-giver but a portion of her Disability Living Allowance benefit.
In the UK DLA is split into 2 components - care & mobility - and claimants are assessed seperately on each. How high they are scored on each component dictates how much money they are awarded.
Pin cushion wasn't asking for a carer to go into her house (she'd already stated her husband gives her the help she needs during the night) - she's just asking to be able to keep the amount of disability benefit she's rightfully entitled to.
Sorry I was at a funeral today so I couldnt post back. Right let me put the world to rights . When I posted Tinder was right. It wasnt in the middle of the night it was this morning. I never type anything in the middle of the night as suffer severe fatigue and bedtime starts for me on most nights at 9pm.Once i'm in bed I either watch t.v or all my family congregate on my bed and we chat . I have severe rheumatoid arthritis throughout my body which i wear hand splints to help keep my hands straight, i also have nerve loss in my fingers and carpel tunnel syndrome. Once i'm up and about during the day i get a bit more mobility in my fingers but thats after being up for at least two hours( morning stiffness is really bad) . During the day I try to get as much done as I can , if i cant do it then the family do it for me.
Yes I typed all this myself and the other posts. one fingered and very slowly.so far it has taken me since 7pm to type this.Its not because I am trying defend my self, this is because i am trying to hold on to something i can still do. albeit it slowly and maybe i cant get cap lock on but i need to communicate.if i cant type i will let my husband do it for me but not te whole time my one finger moves. I DONT ATTEMPT TO TYPE IN THE MIDDLE OF THE NIGHT.
Thanks to you all for your supportive words, and thanks to EMMA as it makes me see it from all sides. I wouldnt normally explain myself as its my bussiness but as it was me who posted you have a right to know.
good luck to you pin cushion
You shouldn't have to explain yourself to someone who clearly jumped the gun - an apology to you would have been nice I think.
I'm sure the majority of posters realise that post times only apply to their part of the world but it is something to bear in mind.
btw I am Tinker, Tinder (who is also un the UK!) explained the DLA.
Tinker;
It doesn't matter what time the post was! My point is/was that if you can type on a computer, etc. then you really aren't considered bedridden and therefore, you would not need round the clock or even night time care. Does it matter that other members have PMd me in agreement? I'm glad there are disability benefits for those who need them, but it's not fair to milk the system. It sounds to me like disability benefits are a must for pin cushion, but not round the clock care. That was my only point. Didn't mean to ruffle any feathers.......
ok from how im reading it it doesnt sound like she is bedridden, and if she was for all we know she could have a laptop that has a wireless connection. It sounds like she needs help getting in and out of her bed, to go to the washroom etc. Who are we to tell her that she doesnt need this assistance when we arent in her exact situation. [QUOTE=Tinder]Emma,
The "care component" that has been withdrawn from pin cushion is not a carer or care-giver but a portion of her Disability Living Allowance benefit.
In the UK DLA is split into 2 components - care & mobility - and claimants are assessed seperately on each. How high they are scored on each component dictates how much money they are awarded.
Pin cushion wasn't asking for a carer to go into her house (she'd already stated her husband gives her the help she needs during the night) - she's just asking to be able to keep the amount of disability benefit she's rightfully entitled to.
[/QUOTE]
HEY AMERICANS a 'care componant' is not a human being. It is not 24 hour care from paid help. It isn't even the money to buy the help from some one.
We get SSDI based on how much we paid into the social sec system for the required number of years - 10 I think.
The UK gives out their money based more on a sliding scale of severity of disease. Christopher Reeve the quadrapleagic super man would get more care money than those other people in a wheel chair. Financial help is based on how stuck you are. It is about turning over in bed by yourself or needing help to turn over in bed.
If she had no one and was having to hire somebody instead of in the middle of a loving family taking care of her doesn't matter in the uk.
Can somebody in the UK explain it better....We Americans just do not understand your system.
I am just stunned that some people would actually tell someone else that if they could type out a long post at supposed 3am that they do not need a "caregiver" for night time, even though I know it is not for that. But still... it just goes to show who has been REALLY brought down by RA and who has not.
I am at a loss, but I guess that is because I have been in pincushions shoes at one time and can relate and fear going back to that state I was in -- bedridden, totally dependent on others, ect.
I am writing on behalf of my wife , not as her voice ( she can speak for herself) but as someone who looks at it from the other side. My wife will do a lot for herself even if it takes three times a long as others, she wont let the RA overtake her ability to manage things.At night time her body seizes up and she has a hard time with movement .she spent most of last week in bed with knee and back problems.Yes we do have a laptop and wireless connection, we also have a special adapted table that slides over the bed as she cant have the laptop resting on her legs.Her typing is erratic( just due to the fact she is a typing hopeless) but whether its one finger or we do it for her, it keeps her in touch with the world. Emma you have no idea what goes on in our house at night time, you have no right to judge my wife.If you suffer fron RA you would know how stiffness and pain on resting affects mobility. there is also varying degrees of the disease and my wife has fought hers but its just getting worse.If people are PM ing you then they just dont have the guts to come out on this board and tell us what they think.We dont get cross with small minded people we just try to educated them.
Right on Mr. Pin cushion!
Mrs. Pin cushion... you are a luck lady to have such a caring, compassionate, loving husband! As so many of us do not have a husband like that, or even family members.
Disability benefits in the uk are broken down in to catagories.Disability living allowance(mobility)and care componant.Then you get them on 3 levels. lower rate, middle rate and higher rate. I get Disability living allowance on a high rate and i pay for a car with it, i used to recieve care componant on a highter rate and this was my bug bear as they took it away after 5 years an said i dont need it. My disease has got worse not better, i sent off all the tests to prove it and drs notes but they still have denied me it. At the end of the day I know what i need and dont, if people are pm-ing Emma they need to come out here on the boards and say what they think as its when you say it quietly its seen as talking about people behind their backs and that is so rude.If you have an opinion express it, we are all entitled.Just dont judge me as you know nothing about me[QUOTE=emmasa01]Please don't hate me for saying this........but.....
you are able to type a really long thread at 3:18am- are u truly as bad off as you think? A caregiver at night seems excessive to me.
[/QUOTE]
Emma, clearly the time of pincushions post did matter to you! Don't worry, you wont be the first to get the wrong end of the stick. At least have the courtesy to admit you were mistaken!
As for people pm'ing to agree with you - I'm sorry to hear that there are gutless members amongst us.
Oh and it's 10.03am right now in the UK
CHILL OUT! I'm entitled to my opinion. I can't sit here and say "Oh poor you" all the time, when I don't agree. What's great about forums is that you hear different opinions and ideas. Pin wrote yesterday that she was "up and about" and went to a funeral. That doesn't sound like someone who needs round the clock care to me. That's just my opinion, though. I agree, I'm not there. However, I don't believe someone posts long messages in agony one finger at a time and I don't believe that it's a voice activated computer, either. I have RA too. There are good and bad days. Tinker- I understand the time change for pete's sake! It doesn't matter what time the posts were. And apologize for what? I didn't do anything wrong. I guess I shouldn't have responded. I knew I would get nailed.I refer you to my previous post.The reason so many people are upset is that here you are with RA and you don't get it, what so many of us are going through. That really hurts. You don't understand how bad a person's functioning can get. Or, to what links one will go to have some means of reaching out to the rest of the world.
This is my only social venue. I can't get out of the house except for doctors and grocery shopping. I need a wheelchair but cannot get one for out of the house. So I am in agonizing pain the whole time. To do grocery shopping, my daughter has to go with me and we have to plan as short as time as possible. There are many times I can't even do it so we just go without.
I have better days when I actually can maybe do a couple of loads of laundry. Other days, I can't even hardly move and must just lay down until the pain and the tight muscles subside.
For so many of us, we are fighting continously against the prejudices of people who don't understand what we are going through. Maybe you have a less severe form of RA. But at times, I cannot even walk across my living room. Other times, it's better. But I never, never know when it is going to hit and be a really bad day.
As has been said many times on this forum, when dealing with disability assessments you must go with your worst day. RA is chronic. You can have good days, bad days, good years and really bad years. I understand where Pincushion is coming from because I'm losing my mobility. I have a terrible time getting up from the bed, a chair, the toilet, taking a shower.
I think her husband is wonderful. Emma, it wasn't about blasting you. It was that we felt we needed to explain how hard it can be. I hope you never get RA serious enough to really understand this. But I hope you can be compassionate enough to not hurt someone's feelings and judge their actions.
I understand what Pincushion is saying because I'm fighting for as much mobility and function as I can. I am also fighting for any kind of help. And, that is extremely difficult to obtain. You literally have to beg and dehumanize yourself to get any help. It is a humilating process that is demeaning on all levels.
It is not you, personally, that anyone wants to make feel bad. But if you read a lot of these posts, it should become clear just how difficult all of this is for some people. Some people never post because they just can't. I cannot believe that you are saying that a person that can type doesn't need this kind of care. I have seen people in hospitals with no more function than to use one finger still try to attempt to communicate. That person could take care of none of his body's needs. He had to be fed and completely cared for. But what a spirit he had. He tried taking college classes and some how, I don't know how, played on the guitar. There's no way he could have held it. It would have been one finger at a time.
When you imply that she is a faker, you are implying it to all of us who are going to extreme efforts to have the most life we can. Some people would just give up. Obviously, Pincussion is not one of those. And, she is very lucky to have a husband that loves and stands by her.
I hope you dont mind but I helped type this post.
I never said anyone was a faker. I'm a RN, I've worked 19 years in a hospital. I know how bad it can get. I've worked with many people on Rehab with conditions such as MS, MD, RA, Stroke, Closed head injuries, to name a few. They have never been discharged home with round the clock care. I truly understand the unpredictability of RA, it really sux. This past summer I wanted to die. I'd look at my kids and cry. I know were your coming from, I truly do. Lots of people need disability benefits- we all have to share. To request 24 hour care for someone who sometimes needs it- seems wasteful of precious and few resources. Of course this really doesn't matter because she is in a different country, after all.Of course it matters, it doesnt matter what country my wife lives in , everyone has to battle benefits. We arent requesting 24 hr care , we are requesting her night time care componant be re-instated as its when she does need a whole lot of help. What we wanted to get across is the fact that the benefits give it to you for 5 years and then take it away when you are at your worst. There needs to be so much more information out there for the public to have access to.Awareness makes better understanding.
Deanna and Tinker we are glad to meet people like you on these forums as you obviously are well aware of the obstacles ahead.
Now I see why you are so jaded. It was part of your job to be so. Just because more people need help than the system provides for doesn't mean she doesn't need the help. You are going to punish her for that?
The problem is not her, but a medical system throughout the world that does not care properly for its most fragile citizens. She needs the care. I have a sister with a special needs child who is medically fragile. They've tried everything to take care of her by themselves. But they finally had to break down and get a nurse to come in and help just so they could survive the exhaustion of 24 hour care.
In many cases, where family is willing to take over that kind of care, even our government makes some kind of compensation for it. That's needed because caregivers become extremely exhausted and are often holding down jobs or raising the children. It is cheaper to add a benefit in to the family than to pay for full time nursing care. If she doesn't get this benefit, will her husband now have to take on a second job to make ends meet? Then who will be there for her in the middle of the night when she can't get out of bed?
And maybe some of those people should have be released with round the clock care. Maybe you realize that now and don't want to face it. Maybe not. But I know that I have run across many doctors and nurses who have not given a damn about me as a human being. That surely isn't you. But maybe working in that environment has caused you to form the opinons that you have.
Do you know what SSI or any other government agency would say to round the clock care for someone with RA? They's say Nursing Home! I'm NOT saying I agree with it-I don't. But it's true. It's hard enough to get that kind of home care for a child on a ventilator or a spinal cord injury patient, or someone with ALS- let along someone who needs the care only some of the time. You know it's true.
Don't kill the messanger.
Just like all these people need help, so does she. We have to work through whatever avenues we can to change the societies that we live in so that all those who need this help can get it.
I am in the inbetween part. I don't need full-time care and I'm not asking for it. But the problem is that since I don't need help to that point yet, I can't seem to get the little help I so desperately need. Right now, I need help with my housekeeping because I can no longer do my floor, clean my bathroom and barely can do my dishes. An agency is starting that on Monday. I kept trying to do these things and was ending up hurting myself. The other things I need is a Case Manager, but I can't get one because I don't qualify for Long Term Care. I have to agree that I don't qualify for that but I do need assistance with all the medical problems I'm going through. I can't find it and it's overwhelming, depressing and making my situation and my health worse. Then, getting a wheelchair that I can manuver has been impossible. I have one, but since my shoulder has damage, I can't really move it. I will wait 3 months for a mobilty chair which, if I get it will be great. But I'm going through knee surgery and shoulder surgery during that time. I really need something I can use now. By the time I get the help I need now, I might not need the chair. I'm hoping but since now I have MS type symptoms and horrible tremors, I may still need it. If not, I will be happy to give it back to them.
It is horrible being in the inbetween and it is really a crime that patients as ill as you described are sent home without the care that they need. This is not a poor country. This is a country whose priorities are out of place.
That's what we have to work to change. Your knowledge of those patients and the severity of their lives could be turned to something good.
In the UK we qualify for care componant if we need help 7 days a week 4-5 times a night.They dont take into consideration if you need help during the day for housework and stuff. We also qualify for disability if we go out to work as well, it must be different in the USA.It is way different here in the US. We can't get SSDI disability unless we are unable to do any kind of work for an entire year or are expected to die within 2 years (?) from our condition. It is a much harsher system, pull yourself up by the boot straps kind of thing.
If you are an educated person lets assume have a high paying desk job like programming it is almost impossible to get disability here. The fact that no one will hire us as we hobble into the interview room, or if we have a job but our performance is slipping due to lack of sleep and too much pain to think straight during the day to do detailed work, does not matter. I would be expected to take a desk jop that does not require much brains and make do.
The nearly blind man (uses a cane but still has a little vision) does not get any help getting to and from work - friends and family or hired help like a taxi is how he gets to and from work. He does not get any kind of disability in the states to help him keep working.
When I said the US people did not understand your care benefit I meant just that. Most people here can not imagine anybody getting disability and working. (we do have something - we are allowed to make 750 per month before benefits are taken away especially if someone is trying to return to work full time.)
Our benefits are subsistence level at best, handed out in the most stingy and demeaning manner possible. Very ugly, actually.
That's right Marian. I am now glad that though I did payroll for 30 yrs and it was not a high paying job therefore I only have to prove that I cannot work about 25-30 hrs per week instead of 10-15. Also if we did make that 0-month it is a lot harder to get our SSDI and that much is taken out of the monthly payment.
My totally blind pastor was denied a long time ago prior to being a pastor and they had to appeal in order to get SSDI. He went blind at age 35 so had no training at all on taking care of himself blind let alone do the logging work he once did.
I believe... if my bad memory serves me right... but we use to have a board member on here that got disability and also had to have 24 hour care. She lived with a family to help take care of her as she was wheelchair bound and tried to do things herself, but she still needed 24 hour care. She was one of the "lucky" few that none of the meds worked for her and she was "allergic" to some of them. She had waited 2 years before seeking the correct medicial help that some of her joints were just mush. By that time all they could do for her was pain pills and high dose of prednisone to help her to deal with the pain and her symptoms. She was always on the internet at all times of the night and day, and for her the internet was her way to interact with people outside of her home. She would even go shopping with the family and go 2 houses down to a friends house and visit for a couple of hours. She even typed sometimes long posts and emails and she done all of this with very deformed hands & fingers... you know the fingers & hands... the ones that scared the crap out of you when you came across them while looking for information on RA.
So... I do think that having severe enough RA you are entitled to 24 hour care. It does not matter if you can get out of the house and go some where or if you can type a long post or even pick your nose, if you need care, you need care.
I have been bedridden and still had to tend to a newborn by myself and was not able to get out of the bed by myself and would have been seen as needing 24 hour care at that point. But when you know someone so fragile and probably even more fragile than you at your worse needs you and depends on you for life you do what you have to do. Even if you have to wipe the baby's butt and you cannot even wipe your own butt and get off the toilet by yourself. There was a lot of crying, pain, and fatigue from getting myself to move or even get out of the bed myself. I would literally feel like I had done cardio for 30 mins after getting myself out of the bed and walking 3 feet to the bathroom. I would literally be sweating and out of breath and red faced, heart pounding and felt like I ran a mile to the bathroom, and then it would take me 5+ mins to walk from my bed to the bathroom 3 feet away.
I don't know a person here except for Joonie. So I am not going to prejudge anyone. But I will say this Madam, you misunderstood Pincushion. She did not ask for round the clock care and that is all your arguement is based upon. Why can that not get thru your head? You don't know a damn about how she maybe affected. I know I am affected physically as a SEVERE RA suffer for over 10 years that I wouldn't tell anyone about. I am sure everyone has that that only they or a significant other knows about.
As for disability saying nursing home to round the clock care, you are incorrect. I know a RA sufferer in the United States on disability and they pay for her round the clock care. So perhaps things have changed a bit since you learned whatever you know.
To be perfectly honest Madam I would've told you go to hell long ago if I was Pincushion and I DEFINATELY would've if I was her husband. Because you misunderstood her, she isn't asking for round the clock care. You misunderstood her, and the system in the UK. You won't even apologize. That's pretty damn bad when you have RA yourself so I am thinking evidently yours isn't too bad because I have been bedridden for weeks even months at a time. Have you? Because you know what I actually qualify for round the clock care myself if I collected disability. I was already told by my social worker that I did and I am just applying at this point.
As for you not believing someone posting long messages with one finger at a time or it having a voice recognition program, how in the hell do you know? I know one person who uses the end of a pencil, the eraser to type one letter at a time. Several of us "Vetern" A.I.ers used to chat with her. She left messages that was longer than Pincushions! You don't know what a severely impaired person is capible of yet still requiring help. Much like a normie when they see an arthritic take the stairs one very good day then think ok that person doesn't need the elevator anymore then.
If people think you are right STAND UP, TAKE NOTICE, AND SAY SOMETHING. Quit being like children and cowering in a corner. At least this Madam has had the gial to say her opinion though she completely misunderstood the situation completely but that sure in the hell didn't stop her yet.
I believe you do owe Pincushion an apology I take my hat off to Pincushion and her husband for keeping their cool like they have!
Pincushion, you and yours will be in my prayers, as well as you Deanna. For for this Madam, Emma, I pray that you have the dignity to apologize for being wrong and prejuding a sufferer of the disease that you also have. You should seriously watch what you say. You never know when YOU may need round the clock care due to RA and someone from your field is saying no she doesn't need it. THEN you will know how much you've probably hurt Pincushion's feelings.
Like I said though, she didn't say a thing about round the clock care. Rule number 1 when arguing a point: Know your facts. And 2, be ready to say you're sorry and mean it when you are wrong from the beginning. Otherwise keep your opposite opinions to yourself as you are not mature enough to express them. I am a grown man and I probably would've cried if I was Pincushion and read what you said! What if you were her? Think about that.
As an A.I.er for 10 years I was here when this site was first bulit by the creators, I never have seen one person say the things that you have. I guess it just show that some people, no matter what they've seen in their lives and no matter what they know, they still don't get it in the end.
Again, you all will be in my prayers.
-Randy
Thanks Randy. Very well said. I know pincushion and her husband will appreciate it as I do.Awww.... Look Randy came out and posted Very nicely put, Randy. Emma - if I read you correctly you are working as a nurse. If so that signifies to me your RA is not as severe as others on this board.Thank you for the link above, i will look at this after i finish here.To all of you again I am so grateful for your support and my husband thanks you too.
And please don't tell me I don't understand the ravages of RA-that's hitting below the belt.
Re typing with RA: I once worked with a lovely young JRA person who made her livelihood as a medical transcriptionist, first on a typewriter, then a word processor and finally on a computer keyboard. I have never seen anyone type that fast (all while listening through earphones to doctors dictating everything from cardiology to neurosurgery, in every accent imaginable). I have also never seen anyone with hands so "deformed". She had to have been in pain many a day. She walked with difficulty, too, especially in the winters here. But she always had a smile and a kind word for everyone. When my pain gets bad, I think of her and all of you on this board who are going through so much, and I am just thankful. That's all, just thankful.EMMA
What is it you dont get or do you not read things properly.I DO NOT NEED ROUND THE CLOCK CARE.I need help at night time as once i am asleep my body shuts down.I cant get up from a laying position, I cant move my hands, I cant stand on my feet, I suffer from severe fatigue and joint stiffness,I have to wear splints to bed to keep my limbs straight or I wake up totally bent over and it takes ages for everything to straighten up.How the hell can I reach a cup with a bendy straw when i cant pick it up and i cant sit up without help to get it. I just hope your RA never gets this bad and that you dont come across someone as mis- informed as yourself.
Yikes, Emma. This has been explained to you ad nauseum. If you still don't get it then LET IT GO. Your opinion on Pin's disability has been duly noted . . . and in my opinion your persistence in this thread is verging on harassment. [QUOTE=emmasa01]Do you know what SSI or any other government
agency would say to round the clock care for someone with RA? They's
say Nursing Home! I'm NOT saying I agree with it-I don't. But it's true.
It's hard enough to get that kind of home care for a child on a ventilator
or a spinal cord injury patient, or someone with ALS- let along someone
who needs the care only some of the time. You know it's true.
Don't kill the messanger.[/QUOTE]
Emma, I don't know if you ever worked in home health but I was a hoome
health RN for 4 years and also cared for a man with spinal cord injury
through work comp of wyoming for 11 years. And I'll tell you from
experience, I witnessed situations that were appalling to say the least.
Let me give you an example. I cared for an 80 year old man who had had
a stroke. He was a veteran. He lived with his elderly wife who was nearly
blind from diabetes. They had a small farm that they were going to leave
to their three children. He was not eligible for any benefits so I would go
in there once every three weeks to change his catheter and trim his nails.
He had a home health aide that gave him a bath 2 times a week. His
home was filthy and both him and his wife were both so disabled, that
they could not manage. His children lived in another area of the country
so they did not have the support close by. The system would not allow
him to get the help he needed to live his daily life, and I'm talking basic
ADL's. He was not taken care of by our current system. Then, I had a 93
year old lady who lived up on the side of the mountain. She lived with her
millionaire daughter and son in law in this huge, fancy log home. She
was on medicaid because she herself had nothing. All her assets were
placed in her childrens name so that she would qualiify, and GET, 40
hours a week of private care, through medicaid. She got around
independently and I went in once every three weeks to draw a protime as
she was on coumadin. At that time, medicare allowed for that blood draw
but I don't think they do anymore. These people were more than
financially capable of affording care for her while they worked. This 40
hours a week, which was paid by we the people, could have been better
used by someone else, like the man who could not care for himself. Now,
I could go on and on. The spinal cord injury patient I cared for, the sky
was the limit as Wyoming probably has the best system out there for
health care, especially their work comp program. This is just a tiny
example of how the system is all screwed up and you know it. If you
work at the bedside and see how debilitated these people are, you can
only imagine how bad it is at home for them with limited help. As a nurse
and someone with RA, you should be more empathetic to these
situations. You have no idea how bad pin cushion may have it. The real
problem is that our system..and it sounds like Englands system is all
messed up and needs revamping. I also, like you am aware that there is
much abuse of the system, I think my example is proof of that. Things
are not going to get better as long as we have a system that is largely
corrupt, and it is. I personally can only hope that the four daughters and
son that we have raised will be there for us because that is what it is
coming to. As long as we keep paying for all the world projects we
having going, this is what we are going to get. We cannot have our cake
and eat it too. I agree that the state of home care is horrendous. I'm not disagreeing with anyone here about the apalling conditions disabled people face, trying to stay home and remain as independant as possible. I also understand Pin is not asking for round the clock care. I get it! My ONLY point is/that I think it was excessive to ask for a nighttime caregiver so that they could get her sips of water. I'd rather see that care go to someone like the old man on the farm that Lorster mentioned. I'm not against anybody here. I wish you could have all the benefits you wanted/needed. But it's delusional to think that the goverment is going to pay for someone to pass you water all night. It this is nauseating to you, Lynk, don't read it. I will continue to respond to posts that are posted in response to mine. I wonder how many others think the way I do. Have you noticed how many views this thread has had? It's getting to be like the Iraq thread! I'm just going to drop it from here and hope that we can just agree to disagree. I'd like to remain a member on this board.
emma, I don't see why you shouldn't remain a member of this board. I remember many of your posts as helpful and caring. You just hit a real sore spot with a lot of us that are struggling so hard.
We have to turn the energy of this into changing things. I would love to see something published about how really bad it is for some people. The other thing to work for is using community programs to reach out to ones in such dire need. I am finding that there are existing agencies and churches that are trying to fill this horrible gap. Unfortunately, finding these services is like a well-kept secret. A lot of them are run by volunteers and private contributions.
I agree with Emmas...if what the OP is asking for is someone to come in over night to give water or something along that line.
And before someone asks me how my RA is...or tells me that I must not be bad enough to understand, well don't bother...I've been bedridden a few times over the 15 years I've had RA. I had to give up my job. I also have to wear my wrist splints...have severe fatigue...severe problems with my feet...etc.
I know Emmas doesn't need my help here, but I've seen how even though she's kept her cool while answering on this thread, the other ppl's posts seem to show so much anger towards her. She voiced her opinion. Others have as well...why not just drop it.
Emma I too dont see why you shouldnt remain an active member on this board, none of us are always going to agree with each other, thats life.My post wasnt to start an arguement and it seems as if each others countries are all different in the way that they award benefits.My only concern was that I said something that got totally taken the wrong way and I didnt want you all to think I was totally bedridden and helpless, I also wasnt asking for someone to be sent to my home to look after me day or night, I have my husband for that and my 3 children.The kind of carers that are sent out to look after someone are reserved for the elderly who cant manage and the terminaly ill and so they should be. Our care componant here is given if we need help during the night for at least 20 minutes each time 4-5 times a night.That help is usually from a family member,which mine is and although the amount of time i need help hasnt changed they saw fit to stop my benefit.When my husband goes in late to work or has days off because he has been up all night looking after me, his wages are less and thats where the care componant has helped, now after helping me at night he gets nothing. I really hope that has cleared up where i was coming from and laid things to rest.