Are there residential group homes in the U.S.? And your exp. when needing more care.

[Misfit Toy]

@GypsyGirl -I live outside of Philadelphia. Where are you? I'm just wondering if you are close. I could possibly help or try. I am so sorry about your husband and your health. It is beyond overwhelming and downright not fair.

 

[Tammy]

Though Im not in America, I'm curious how the American system works around all this. Is your caregiver paid by your government through the medicaaid thing?

Someone here told me there wasn't government paid support services for the severely disabled in America (and of cause severely disabled cant work) and I've been trying to work out how these people then survive if their support services aren't some how paid for..

It depends on what kind of Medicaid you have.......there are different kinds (I didn't know this until last year)......and of course I don't have the kind that covers at-home aid..........none of it makes any sense to me. There is another program called COLT previously known as the D & E waiver (disabled and elderly).......you call the number and get on a very long waiting list......I think I've been on the list for a couple of years now. Anyway......once they call you.........they come to your home and assess your needs and set up home help for free.

 

[Sushi]

hough Im not in America, I'm curious how the American system works around all this. Is your caregiver paid by your government through the medicaaid thing?

Someone here told me there wasn't government paid support services for the severely disabled in America (and of cause severely disabled cant work) and I've been trying to work out how these people then survive if their support services aren't some how paid for..

There are two programs, Medicare (if you are over 65 or on Disability) and Medicaid which is income based. A lot of us fall through the cracks and get no support services--none, zip. That means either living with friends or family or if that isn't an option, going into a horrible, basic nursing home where there would be no proper food or care for an ME/CFS patient.

Sushi

 

[barbc56]

@GypsyGirl

Sorry for your circumstances. I hope things improve for you soon.

In another thread, see below for link, @ahimsa mentioned calling 211, an agency that can connect you with social services. I had never heard of it and it looks very helpful.

http://forums.phoenixrising.me/inde...stress-not-sure-what-to-do.37299/#post-592229

Here's the national site where you can see if this service is available where you live.

http://www.211.org

Best wishes.

Barb

 

[Misfit Toy]

I'm on Medicare and when I had surgery, Medicare would not pay for home healthcare. I had to pay for it out of pocket. I was not housebound, so not truly disabled in their eyes.

I had no hand use, no arm-but I was not in their mind disabled.

Also, because I had a car, I was also not disabled. Even though I could not drive.

I paid $100 for 4 hours of their time and I had to pay for gas.

 

[Misfit Toy]

Another thing – Medicare did pay for a nurse to come and visit me but for what? The nurse would come in take my temperature, take my blood pressure, and asked me to stand. That's it. She would tell me to keep taking my Percocet. Then I was told, if you have any problems call the surgeon. Wow, what a revelation!

Most of these nurses lived about an hour away from me and drove all the way out to see me. And they did this three times a week. To the point of where I called them and I called Medicare and I told them I wanted it to stop, it was stupid.

What I needed was home healthcare not this crap. You want to know my temperature, I'll put a thermometer in my mouth and I will let you know.

 

[aangelonduty]

I don't know which situation is worse/better. I've hit a wall of exhaustion - not just with being sick, but with fighting and fighting to get better. ...I feel like if I could rest - really rest - without the bureaucracy in a safe place, I would feel better in a more timely fashion. Big dreams, right?

ohhhh..GypsyGirl, I am sooooo sorry u are feeling & going thu all of this stuff... I can so relate to u.....gosh, no one can even have a clue !! of what it is like to be in the middle of what feels like ' hell ' most of the time....I 2 like you do my very best to keep a positive attutitude....but boy, those days that we really don't know how long we ' can hang in there ' ....r basically a Bitch ! I so wish there will be a day, where the ' us's ' can live in an awesom,e community..where we ALL can understand .....i am not able to keep up w/ most things these days, so i may be slow as moses, BUT for ' us' ... pls know.....that u have a freind here.....
" I'm sorry I don't have a more cheerful response for the time being. I meant to answer, but it turned into a rant. :-\ I'm so angry at continuing to fall through cracks, and I keep getting sicker as I beg for help. It feels so hopeless. There are so many people sick like this. There's nowhere to go, and no one seems to care." ........I CARE !! and your words sound like mine this week....sometimes it just fucking sucks ! sd'ing u light. love...& huge compassion xxxx

 

[aangelonduty]

Someone here told me there wasn't government paid support services for the severely disabled in America (and of cause severely disabled cant work) and I've been trying to work out how these people then survive if their support services aren't some how paid for..

Pls forgive me for taking so long to respond back to u......yes, our screwed up goverment...does pay for some things...but u got to be ' poor '....then there is medicaid....but none of our docs have any idea what the hell is wrong w/ us.....& how we survive ? ...barely !! ( i am hoping & praying that I don't end up in the streets rt now....so it is w/ the Grace of God & a LOT of Faith ) ....Blessing's ~~~~

 

[aangelonduty]

ohhhh..GypsyGirl, I am sooooo sorry u are feeling & going thu all of this stuff... I can so relate to u.....gosh, no one can even have a clue !! of what it is like to be in the middle of what feels like ' hell ' most of the time....I 2 like you do my very best to keep a positive attutitude....but boy, those days that we really don't know how long we ' can hang in there ' ....r basically a Bitch ! I so wish there will be a day, where the ' us's ' can live in an awesom,e community..where we ALL can understand .....i am not able to keep up w/ most things these days, so i may be slow as moses, BUT for ' us' ... pls know.....that u have a freind here.....
" I'm sorry I don't have a more cheerful response for the time being. I meant to answer, but it turned into a rant. :-\ I'm so angry at continuing to fall through cracks, and I keep getting sicker as I beg for help. It feels so hopeless. There are so many people sick like this. There's nowhere to go, and no one seems to care." ........I CARE !! and your words sound like mine this week....sometimes it just fucking sucks ! sd'ing u light. love...& huge compassion xxxx

 

[GypsyGirl]

Thank you for your responses, they mean a lot.

@barbc56 - unfortunately, because I'm technically still married and fall under my husband's income as his dependent, I don't qualify for most social services. (I keep calling different services and get the same answer.) Same with trying to get legal help for a separation agreement/divorce - I don't qualify for legal aid, but I can't access my husband's income to pay for legal help.

@Misfit Toy - I live about 45 minutes NW outside Philly. If you've had anything/anyone who was helpful (docs, services, etc), please feel free to pass it on. And I second the absolutely useless home health services. Right now, I've got 3 people a week coming in, but no one who can help me to appointments, shower, pick up meds... Instead I've got a p/t who tells me to "keep walking" (duh), and a psych nurse who takes my vitals and asks if I have any self harm/suicidal thoughts. Every.Week. I feel like they're stealing the energy I have, but that if I don't go along with it, I'm being a non-compliant patient.

I am considering a voluntary admittance to a mental hospital, but I'm afraid my physical state will decline and I'll be treated badly/with suspicion for psychosomatic illness. I just want to sleep for a few weeks without being woken up by a screaming child, an asthma attack, or endless questions. A mental hospital seems to just be trading one bad situation for another. I don't know. :-\

 

[Misfit Toy]

@GypsyGirl -please no psych hospitals. You will not sleep there. It's horrible and you are busy all day. You are too sick!

 

[GypsyGirl]

@Misfit Toy
I was afraid of that (regarding mental hospitals). :-\ Sounds like a way to physically backslide fast.

 

[Misfit Toy]

Yes...no way. They don't accept us CFS people. We are just depressed people to them.

 

[taniaaust1]

Another thing – Medicare did pay for a nurse to come and visit me but for what? The nurse would come in take my temperature, take my blood pressure, and asked me to stand. That's it. She would tell me to keep taking my Percocet. Then I was told, if you have any problems call the surgeon. Wow, what a revelation!

Most of these nurses lived about an hour away from me and drove all the way out to see me. And they did this three times a week. To the point of where I called them and I called Medicare and I told them I wanted it to stop, it was stupid.

What I needed was home healthcare not this crap. You want to know my temperature, I'll put a thermometer in my mouth and I will let you know.

That sounds typical of the stupidity of government services no matter where in the world one is. One has to really wonder what fools are making these decisions.

There was only talk yesterday from a place I sought help from, he suggested a nurse come in for me and I did actually say "well what is that meant to do".. send me a doctor who can deal with my issues or more home care. Anyway, Im now waiting to see what is going to happen and be suggested next.

 

[taniaaust1]

Pls forgive me for taking so long to respond back to u......yes, our screwed up goverment...does pay for some things...but u got to be ' poor '....then there is medicaid....but none of our docs have any idea what the hell is wrong w/ us.....& how we survive ? ...barely !! ( i am hoping & praying that I don't end up in the streets rt now....so it is w/ the Grace of God & a LOT of Faith ) ....Blessing's ~~~~

I really really hope it works out for you. Im thinking of you.

I was writing on my thread the other day that Im now seriously considering doing something to go to jail.. it would give me a holiday and get me out of the dust which gives me asthma in my house and Im so sick of staring at mess. Jail is looking like a better option when I cant cope myself right now even if the food there is all wrong for me (I often aren't eating here anyway as food prep it send me over my limits to stay as stable as I currently can).

Just imagine.. jail is a place where all your washing gets done, no housework or having to do anything which makes you crash (except the early morning roll call in which you are made to stand against a wall. I'd have to make sure Im arrested with a letter from my doctor to say I cant do standing).. enforced rest!! Just what I need. It would be a holiday to my current struggles to basically survive.

I don't even have the option currently to move into a home for disabled people as my state of Australia deems this illness not to be one it will support in anyway. Section 82 of some act allows them to discriminate against disabled people including us, it doesn't matter how sick we are, they are except from the disability discrimination laws and there is not a thing which can be done about this. (a lawyer I saw other day told me this). They can kill me due to discrimination and are immune from being prosecuted..

My discrimination case will be probably thrown out of court on Wednesday due to this thing which gives them immunity and allows them to say no help will be given no matter how severe the person is.

 

[taniaaust1]

unfortunately, because I'm technically still married and fall under my husband's income as his dependent, I don't qualify for most social services. (I keep calling different services and get the same answer.) Same with trying to get legal help for a separation agreement/divorce - I don't qualify for legal aid, but I can't access my husband's income to pay for legal help.

Can you get a social worker or another who may be able to pull some strings or know of other options you may never otherwise find out? I think we get paid less attention too if we are advocating for ourself.. people don't believe how ill we are.

And I second the absolutely useless home health services. Right now, I've got 3 people a week coming in, but no one who can help me to appointments, shower, pick up meds... Instead I've got a p/t who tells me to "keep walking" (duh), and a psych nurse who takes my vitals and asks if I have any self harm/suicidal thoughts. Every.Week. I feel like they're stealing the energy I have, but that if I don't go along with it, I'm being a non-compliant patient.

That sounds truly terrible and something you don't need, that excess stimuli would make me very sick. Can u ask for another p/t on the grounds your current obviously don't know a thing about ME/CFS or send some good info to her heads on ME/CFS pointing out this is unsuitable?

I am considering a voluntary admittance to a mental hospital, but I'm afraid my physical state will decline and I'll be treated badly/with suspicion for psychosomatic illness. I just want to sleep for a few weeks without being woken up by a screaming child, an asthma attack, or endless questions. A mental hospital seems to just be trading one bad situation for another. I don't know. :-\

Mental hospitals are one of the worst places for ME/CFS people. I had both involuntary and voluntary admissions over the years to mental health wards due to becoming suicidial or suicide attempts and I'd put the odds at 90% that you will be made worst.

They even threatened me with and was going to drag me out of bed early each morning when I had severe insomnia and a reversed sleep cycle and wasn't getting to sleep til 5.30am ..they were expecting up at the tables with the rest of the patients awaiting for breakfast at something like 7am... I was extremely suicidal at the time so should of been there but had to discharge myself due to all this.

They also put me right by the recreation room and the nurses station where I was exposed to noise night and day (TV and all the other patients talking during day) when I had severe noise intollerence. I could get no rest at all there. If I had stayed there, I would of ended up fully bedbound all the time again as without rest, I decline fast.
..........

I choose to go to jail instead at one point for a rest (refused to accept bail conditions for something I didnt even do while it was going throu court).and currently are seriously thinking of doing that again. For myself I found it was a far better option then a mental health ward. Besides Im since having issues with a doctor not believing Im suicidal and who accused me of attention seeking (he said ME/CFS was in my head and not the cause of my symptoms) so I doubt if I'd get readmitted in a mental place again no matter how depressed I get over my situation.

When I spent nearly a month in jail, they kept me in an isolation room on suicide watch. It was VERY peaceful in that room though the complete isolation made me start to feel like I was going to go crazy just before I decided I'd accept the bail conditions so to get out.

* Guards didn't treat me nice in jail, I was physically abused by one there, a guard stepped on my head trying to make me get up after I collapsed and couldn't... but the other prisoners, they treated me nice (I had limited contact with them but did at times)... and the ones I had contact with eg in van on way to courts or waiting to see the doctor or wating somewhere else in the jail for something where other prisions were waiting too.. they were all extremely nice to me and obviously didn't think I should of been there.

(Even the couple of looney..obviously mental health issues, violent ones there eg in my isolation ward cause they'd hurt others were very nice to me and actually sympathetic towards me. It was like they could see something and that I was quite ill where the guards couldn't. It was like I got more sympathy there with the prisoners then I often get in real life! The whole thing was ironic that criminals treated me better).

Its crazy the options we end up needing to seriously consider due to not having options we are needing.

 

[taniaaust1]

@GypsyGirl -please no psych hospitals. You will not sleep there. It's horrible and you are busy all day. You are too sick!

Second that, they may keep you out of bed all day and not allow you in bed to rest. They may even lock the door to your own room to keep you in the recreation room with the other often noisy patients with the TV blaring.

Even if you were needing to be in a mental hospital due to severe depression, I personally wouldn't advise it for a ME/CFS person as this serious illness gets ignored there.

 

[Daffodil]

this thread is making me boil with anger. how can they do this to us?

 

[Daffodil]

i have had a little experience with psych hospitals....i personally found that nurses love it when you sleep and are out of their hair. ...but you could end up with a roommate..at least thats how it is here.

i have called nursing homes when i was becoming unable to care for myself, and they said they did have some younger MS patients.

 

[Kati]

@taniaaust1

Since I posted this thread, my husband left me. I lived alone for about 5-6 months. I moved from NC to PA as I could no longer care for myself (couldn't get to doc appts, groceries, meds). I moved in with the only people who could/would take me in. The first few weeks were bad as I had asthma attacks and seizures as it was a smoking household. (They've since stopped smoking and cleaned their apartment better, so the seizures have stopped.) Neither drive, so I'm still having problems with everything but food; I'm no longer malnourished. I share a room with their toddler. I've lost more function and am more bedbound, never leave the apartment, never go outside. I'm going through "The System" again, being evaluated and referred around to appointments I can't get to.

I don't know which situation is worse/better. I've hit a wall of exhaustion - not just with being sick, but with fighting and fighting to get better. ...I feel like if I could rest - really rest - without the bureaucracy in a safe place, I would feel better in a more timely fashion. Big dreams, right?

I'm sorry I don't have a more cheerful response for the time being. I meant to answer, but it turned into a rant. :-\ I'm so angry at continuing to fall through cracks, and I keep getting sicker as I beg for help. It feels so hopeless. There are so many people sick like this. There's nowhere to go, and no one seems to care.

@GypsyGirl i am so sorry you are going through such rough time. I hope you find the perfect home and the perfect place for you to live in.