41 replies to this topic

[wheeliebear75]

I signed into my Yahoo & look what popped up in the "Yahoo news"?

http://news.yahoo.co...ing_homes_young

It'd be nice if since it made yahoo news that more people were willing to try & do something about this problem......but I'm not gonna hold my breath on it. It does however at least bring up the issue into the minds of more than JUST those of us who are actually dealing with major health/mobility issues.

[tyvin]

Yea; they tried that with me. I ended up in what are called Adult Family Foster Care Homes (AFFCH). Every state has some sort of version of these types of homes for the disabled and elderly. They were formed years ago because of the demand for more space which the nursing homes could not fill.

It all depends of which family you get placed with but my experience was a nightmare and I recouped as fast as I could and got out.

Hallelujah

[S&W Winger]

Coalition for Independent Living...

Also most states have other programs to keep people Living in their communities rather than HELL...my two and a half months in between trauma hospital and rehab were enough...I will die before I ever go near a nursing home again.

And one of my future goals, a reason I am still alive: as soon as I am well enough to move beyond personal survival mode, I plan on doing whatever possible to assist others in escaping from homes, or preventing their being stuck in one in the first place...I imagine various scenarios, but mostly rescue and prevention methods...I would really appreciate any input on realising this goal...maybe even a network of subversives, breaking inmates out...oh, sorry, got lost there a minute...seriously though, this is one of my goals, and I am working on implementing this within and outside of the system of social workers, case workers, and do-gooders with their own various agendas, usually entwined with the insurance companies and private healthcare suppliers...we just need to keep people out of HELL and get them out if in...help set them up in appropriate housing, and find them personal assistance to Live...

[isobar]

Hi,




This story really hits home , i had to stay at nursing home after a surgery once because i have no CNA  and could not perform  my daily needs. My stay lasted three weeks my roomy was elderly , blind and combative . He would get out of bed and start wandering about the room undressing  his bed , move furniture around and urinate on the floor because he couldn't find his urinal ... that  part i understood . I  started to ask for another room but decided to stay there because i could call the staff when he tried to ramble about the room which was unsafe for him . They began to move him out by the nurse's station to keep an eye on him eventually they gave him something to sedate him and he'd sleep constantly.... no more problem for them . A friend of his came to visit he wasn't responsive at all it was sad because she said he was the week before he was relocated , i assume to another area . I remember another incident also a lady came to visit her husband and he also was unresponsive she had him relocated to another facility that day . 




What was odd on my second post surgery doctor's visit i was cleared to resume my daily routine . I asked about my being discharged from their care i was told that decision was up to occupational therapy depending on my progress . They tried to have me do occupational therapy after i told them i lived alone unassisted  taking care of all my needs and had been for years ... i'm just here to heal i have no aide. I also  told them i transfer in and out of vehicles with no help other than wheel chair stowage .... only after doing a bed to chair transfer  they had me do light lifting and cooking .... all of which i could have done at home . PIMP the Insurance Co.




 The facility did have activities movies , games , a outdoor patio ,  a hair stylist , LCD televisions , you could wear your own clothing , 24hr visitation and cooked a large breakfast every friday morning . You had a designated  shower day once a week , had to sign the patient register when ever you went out of the building via the main entry , bland food and  for some reason the dull - drums would strike at night ..... time seems to linger on and on. Worse of all was no privacy , improper wound dressing technique and a little lost of dignity. It's just  a scenario where depression can definitely set in. My stay  was short and i connected with other patients.

[edlee]

Things are not always as we would like them, are they? It's a well accepted rule in buisness that consolidation of efforts is more cost effective than dispersal of efforts. Perhaps the solution isn't getting people out of institutional care( where their care may or may not be better),, but improving institutional care. There is already a growing movement in that direction,,, it obviously needs impetous,, but it's a start.

Requiring more individual oversite in everyday routines,, mandating training for those doing the hands on care. Holding individual care givers as responsible as their employers when things are amiss.

It will bre more expensive,, but less so than providing equivilent care in the community. Sometimes it's better to fix the old barn while you build the new,,,, better for the cows, at least.

Moo
ed

[S&W Winger]

Things are not always as we would like them, are they? It's a well accepted rule in buisness that consolidation of efforts is more cost effective than dispersal of efforts. Perhaps the solution isn't getting people out of institutional care( where their care may or may not be better),, but improving institutional care. There is already a growing movement in that direction,,, it obviously needs impetous,, but it's a start.

Requiring more individual oversite in everyday routines,, mandating training for those doing the hands on care. Holding individual care givers as responsible as their employers when things are amiss.

It will bre more expensive,, but less so than providing equivilent care in the community. Sometimes it's better to fix the old barn while you build the new,,,, better for the cows, at least.

Moo
ed

WTF, ed??????

The humane goal in a modern society is to maintain care at home and to keep the individual in their community...not warehouse them away, out of sight and out of people's hair, in HELL. In the past, the elderly stayed with family until Death...it is only in our post-modern "society" that nursing homes were created and folks whisked away from their family and homes as a matter of convenience: sick...despicable treatment of the disabled and elderly...

In fact, it is less expensive to provide home care in most cases. And, the individual care is always better than institutional. Equivalent care? There is none in a nursing home: 20 minutes per patient per day if a lucky. And the movement is actually AWAY from institutional care and oh jeez, did you really write this post????

I just cannot even respond to your post any longer, the more I think about it...I am appalled that you would even suggest that a nursing home is a viable option for anyone. Except for some cases of hospice care, everyone should have a home and stay in it. Even hospice could and should be at HOME not HELL.

Nursing homes are HELL. I will die before ever returning to one again. My family researched and visited and even with their due diligence, I landed in HELL. It was temporary but it did not feel like it at the time. And later, a few do-gooders suggested that perhaps I belonged "Living" in HELL...no thank you, the four AM hours and one PM hour of care I receive daily is adequate compared to the 20 minutes of torture and abuse in the HELL facility...

OMG, I still am simply appalled at the suggestion for anyone just because they have a SCI...fokking absurd. So someone with a SCI should be in HELL?? WTF????

Ed, why don't you leave your home and go Live in HELL for a while, then get back to this post...

Edited by S&W Winger, 08 January 2011 - 08:18 PM.

[sh1wn]

Wow, I just wanted to say these kind of stories scare me, I am lucky that my mom is able to help me.

[Tinbasher]

"Care" homes are warehouses for the socially dead until their physical death.

My whole working life since my injury has been developing ways to ensure that disabled and elderly people get the resources they need to maintain a life in the community which they choose. Even the best run most enlightened care home cannot fail to be abusive.

Tin

[Tetracyclone]

Uh-oh, Ed, you set Beverly off again. She can go on for a week once she's been triggered...

[S&W Winger]

Uh-oh, Ed, you set Beverly off again. She can go on for a week once she's been triggered...

Uh, pardon me, but "if you are not part of the solution, you are part of the problem..." Tinbasher has dedicated his Life to being involved with solutions...

Not sure how you would feel about being stuck in a nursing home like so many of our members have found themselves...thus there are times for jokes and then there are moments to be serious about a very serious problem...at this moment there are at least three people on the forum in this situation that I know about...would they think this funny?

[McTavish]

I agree with Bev, I would rather die than go into on of these homes, when I was in Rehab a few girls who had no arm movement and were not able to go back to their own homes were heading into one of these homes, I often think of them and thank God I am not in their position. In my opinion there could be nothing worse.

[S&W Winger]

I agree with Bev, I would rather die than go into on of these homes, when I was in Rehab a few girls who had no arm movement and were not able to go back to their own homes were heading into one of these homes, I often think of them and thank God I am not in their position. In my opinion there could be nothing worse.

There is nothing worse than HELL...so sad that they did not have the wherewithal to access home health care to keep them going in their communities...

This is the reason we need to have people like Tinbasher to help...and we need more and different approaches to this problem...if even one person slips through and winds up stuck in HELL, then this diminishes our Lives...not only in what they would/could have contributed to society, but also as each Death does diminish us, so does a Living Death...

We, on the outside, are better able to find ways to help them break out...and I am looking for more ideas, in a practical sense, as Tin does, through the proper channels...

Edited by S&W Winger, 09 January 2011 - 03:07 PM.

[wheelchairbling]

In the past, the elderly stayed with family until Death...it is only in our post-modern "society" that nursing homes were created and folks whisked away from their family and homes as a matter of convenience: sick...despicable treatment of the disabled and elderly...

It's a bit of an exaggeration to say that so many people are in nursing homes just for convenience. We have many more people living to advanced ages than in previous generations, as well as many more surviving severe injury. In the case of people over 100, their children are in their eighties and their grandchildren in their sixties. In my own family, I'm dismayed at how few able-bodied adults there are.

And home care in the past wasn't necessarily so great. For disabled people, it was often horrific. Disabled folks were locked in attics, tied to beds, severely abused, sent to distant residential schools, etc. Kids are still rescued from situations like this all the time.

That said, of course many people could live at home for the amount that's spent on nursing homes (in my state, about $4000 per person per month). I blame the political power of the nursing home chains, which lobby against Medicaid-funded home care programs, as well as the weird perverseness of home builders, who refuse to make new homes even minimally accessible.

The only thing that has required people to go into nursing homes, in the cases I know, is lack of money. The families would gladly have kept them at home, if they could have had continuous help with the heavy lifting, transport, nursing, home modifications, etc. The money is there, it's just all allocated to nursing homes.

[Tetracyclone]

Wheelchairbling-

Thanks for describing the full range of in-home care. Families have often been hell, as well.
It is like the 13 levels of the Mayan underworld! So many possibilities! A veritable buffet of regurgitated delicacies!

I will not give up my laughter!

[S&W Winger]

Uh-oh, Ed, you set Beverly off again. She can go on for a week once she's been triggered...

Wheelchairbling-

Thanks for describing the full range of in-home care. Families have often been hell, as well.
It is like the 13 levels of the Mayan underworld! So many possibilities! A veritable buffet of regurgitated delicacies!

I will not give up my laughter!

I never proposed such an absurdity as having SCI'd people Live with a hellish family...however, I did suggest finding ways to allow people to remain in their home/in their community with the appropriate help...and that from my experience, nursing homes are HELL.

So you may belittle me and my posts in your feeble attempt at humor, however if there is a new person stuck in a nursing home seeking a way out, I hope they see through this thread that some of us have found ways out, and did not just laugh at others. Woofy and I are usually the ones finding the craic, and some of you do not always "get it" ...but if you have a desire to find it at my expense, carry on...your humor perhaps covers up your own fear of nursing homes...

[jenny407]

Very painful topic. But important.

I much agree with Bev. And I don't understand ed's post. Are you saying that costs and effectiveness are the most important factor when dealing with humans, ed?

Apart from the discussion if nursing homes are really more cost-effective than home care, each person has a right to be treated in a decent, dignified way. And society has the duty to ensure this.

I find it very important that people work for this aim - like Tinbasher does, like Bev plans to do.



As for the elderly, unfortunately the situation is not always so easy. There have been problems in my own family. What I'm referring to is the mental state of a person's health which may make home care very difficult. The physical side is not the point.

[greybeard]

Uh-oh, Ed, you set Beverly off again. She can go on for a week once she's been triggered...

Wheelchairbling-

Thanks for describing the full range of in-home care. Families have often been hell, as well.
It is like the 13 levels of the Mayan underworld! So many possibilities! A veritable buffet of regurgitated delicacies!

I will not give up my laughter!

I never proposed such an absurdity as having SCI'd people Live with a hellish family...however, I did suggest finding ways to allow people to remain in their home/in their community with the appropriate help...and that from my experience, nursing homes are HELL.

So you may belittle me and my posts in your feeble attempt at humor, however if there is a new person stuck in a nursing home seeking a way out, I hope they see through this thread that some of us have found ways out, and did not just laugh at others. Woofy and I are usually the ones finding the craic, and some of you do not always "get it" ...but if you have a desire to find it at my expense, carry on...your humor perhaps covers up your own fear of nursing homes...

Bev, you are doing exactly what you would jump all over if anyone else did it. Stereotyping. Just because you had a bad experience, it does not follow that all care homes or nursing homes are HELL. Undoubtedly some are, but by no means all.

Both my mother and mother in law recently died in two different nursing homes. They were there because the level of care they required was beyond our abilities to deal with in our home. Both places were superb. The level of tender care they gave was way beyond anything I had been expecting. Both ladies were glad to be there - for the companionship of the other residents, and because the staff treated them with respect and kindness despite the difficulties their dementia caused for the carers.

Hopefully it will never happen, but if I were to become totally incapable of caring for myself, I would really rather be in a place like these two, than struggling in isolation in my own home, worrying whether the carer would turn up today.

[HiltonP]

As with most things in life this should be handled with moderation.

I know just as many disabled people who live at home and are being abused by their
families, as those who live in institutions and are being abused there.

Closing down institutions and sending everyone home is not necessarily a good thing,
just as shipping disabled people off to institutions isn't a good thing.

A good thing is raising the standard of living of disabled people to a level which
allows them to make their own choices, and plan and run their own lives.

[S&W Winger]

GB, I am not proposing that families take on a burden at all...there is help available for in home care, same as there is nursing home available...my experience mirrors everyone I know here in the States...

And no one mentioned closing facilities...

I do not burden my family with my care...I have aides come in twice a day for a few hours, that is all. If I were so unfortunate as to be in one of those HELL places, I would be lucky to receive even 20 minutes of "care" as they are understaffed by overworked individuals who care little about care, this from experience, mine and others'...I was GIVEN 5 different infections, two pressure wounds, and various other abuse and neglect issues that do not belong on this thread.

It cost less for me to receive home care than it would for inpatient, also.

My whole point through this subsequent nonsense is that allowing an individual to remain in their home and in their community is preferable and sure as hell beats Living in HELL...perhaps read what I had written at my first post...along with Tinbasher's position.

I am finished here as this has been reduced to a line of crap when it was started as an awareness thread...a newcomer to the forum does not need to read this, but they would need to read the OP's and our later posts of Hope for their situation if they find themselves in a home...as I do know of several on the forum, NOT by their choice.

[S&W Winger]

I would rather be in my own home wondering if my aide will show up, than in a nursing home wondering which aide will bathe me with dirty water or put on my contracture boots so that instead of preventing a problem they cause pressure wounds on my feet...

[edlee]

It's pretty obvious, Bev, that you have had some very horrendous episodes with nursing homes. Such has not been the case with me. While I found one that was much as you describe, I am pleased to say that the other four have been even better than I might have hoped.

Personally, the thought of going into ANY home other than my own is not on my list of things to do,,, I will , also,, NEVER inflict myself on my children. I am pleased that you are recieving the level of care needed for you to stay where you choose. And that the care you need is paid for by others, ,,, I have to assume that last, because you say there is money available to everyone for that purpose. I haven't found that to be true,, but maybe I'm not looking hard enough.

I would never want anyone to go into one of the HELL holes you describe. But not everyone will be able to avoid some form of institutional care. So why not make such care meet the standards that even you would approve? In the financial climate we all find ourselvses exposed to,,, with the cuts in both medicare and medicaid looming larger every day,,, the idea that care is cheaper in ones home than in a nursing home is,,, well,, how should I put it so as not to offend you,,,,, I know,,, BULL SHIT.

I can work a spreadsheet as well as the next guy,,, I know what it costs to keep me here,, in my home. It would be great if everyone could stay where they chose,,,, it would be nice if we all could have hot tubs and pools. But what would be nice and what we can afford are two completely separate things. So if we are going to FIX something,, why not fix what YOU know is broken. Nursing homes CAN be improved,, and SHOULD be.

You,, and many here,, won't like this either,,, but hell,, I've gone this far,,,, I was brought up to take care of myself,,, to take nothing I didn't work for or pay for, I buy what I can afford,,, I save up for what I want. I feel that everyone else should do the same. If I get to the point that I don't feel I can afford to live at home,, I'll be the first to start looking for someplace else,, and it won't be in my children's homes , either.

Oh,, and before you ask,, yes,, I do beleive in charity,, and I donate when and where I feel is warranted. I believe in charity,,,, I just don't take any.
ed

[Tinbasher]

I should not be about charity it should be a simple agreement with wider society that those who need support to live in the community recieve it. It is nothing less than an indicator of a civilised society.

Nursing homes are nothing less than the modern manifestation of locking away the cripples, warehousing them, turning them into a commodity for the home owners who are mostly big money.

The Direct Payment scheme we have in the UK is not perfect but it allows Social Services to give money to a disabled individual so they can arrange, pay and manage their own care. At its best this allows people to stay in the communities where they already have support and social networks.

I fear for the USA in this respect, a society where somone no matter how deranged whould kill over the need to share medical support to everyone may be too far gone.

Tin

[S&W Winger]

Agree, once again, Tinbasher...

And Ed, you do not quite understand my point(s)...

First some clarification: I have private insurance which pays for my care. As a financial consultant/investment and insurance agent, I made certain I that was "covered" - but for people unfortunate/unable to hold private insurance for whatever reason(s), there is Medicaid and MedWaiver, which would be the source tp pay for a nursing home for these people, thus my point being that with the goal in mind (AND with the best interest of the individual at heart) to allow the person to remain in their own home and within the community, MedWaiver could be utilized to pay for home care...this would cost the taxpayers LESS than a nursing home. Also, none of this is charity or entitlement, as most people have worked and paid taxes, thus having contributed to the system and then in need of drawing upon this service, as with other insurance, which is the precise structure of these programs...

I am so happy for you that up there you were able to find so many acceptable nursing homes...not possible in FL...beyond the myriad of concurrent issues (lack of privacy, poor care, loss of own home, etc.) the main concern should be the choice of the individual...

AND again, I never mentioned that anyone should be a burden to their family.

It would appear that a few folks would rather be argumentative rather than solution-oriented in this matter...

My goal is to assist people with finding ways to remain in their own homes and within the community...I commend you on your goal of reforming all the shoddy, insurance fraud-riddled nursing homes: that is a noble and challenging pursuit...please post us with your progress...as when I am well enough, I will share whatever success I may achieve within my own goal(s)...with the help of Tinbasher and the others seeking these and similar ways of helping our fellow SCI'd, elderly, and other friends...



Oh, perhaps we could conduct a survey on where people would rather Live? Or have their family members Live? [without being a burden to family, as there is enough assistanc available out there]...

[jenny407]

I should not be about charity it should be a simple agreement with wider society that those who need support to live in the community recieve it. It is nothing less than an indicator of a civilised society.

the main concern should be the choice of the individual.

This topic is very important to me. I was thinking about my answer - and these two sentences were exactly, nearly word by word, part of my reply.

However, I also disagree in one point. I do know circumstances and individuals in my personal surroundings (friends, family) when a nursing home was a good solution for everybody concerned. A solution appreciated by the 'patient', too. People who wished some kind of around-the-clock professional care. For whatever reasons. Their choice. I do not agree with seeing only one possibility. People and circumstances are different. And I would not wish to frighten members who - perhaps, for whatever reasons - consider a nursing home.

On the other hand - it's all about an individual's personal choice. And if somebody chooses to live at home, it's most certainly NOT a question of charity, of having to be thankful, of asking favours. It's their RIGHT! It's what a modern society and tax-paying are for! I strongly disagree with ed, once again. If he chooses this his way, it's ok for him. But not for everybody else. I do pay my taxes (lots!) and insurance (lots!) just for that. And I'm very willing to support (by my taxes and insurance money) those in society who cannot afford as much. That's the idea of solidarity in our society.

The kind of work that Tinbasher does is very important. While I can usually decide my own affairs myself and dislike being given advice, I was very grateful for a kind of social worker who helped me with alternatives and decisions in a similar situation. And her question was: "What is it the 'patient' would have wanted?" (A situation when the 'patient' couldn't decide herself.) Yes, just THAT.

[edlee]

There is, of course, no question that the "ideal" is to all have everyone's "choice" be upheld. Unfortunately, that is not,, nor ever will be the case. We all make compromises,,,,, surely I needn't be specific,,,, and those compromises more often than not involve money,, or rather, the lack of money. The UK and the US have a few differences. Not the least of those deal with our respective health services, and the way those services are paid for.

Maybe you've all heard about our enacting new health care laws, here. If so, you've also heard or seen how difficult that was,, and how intensly the political infighting became. There are still lawsuits working their way through our legal systems, that are trying to disavow those new laws. And we aren't talking about "universal" care, either. So it becomes very clear to any one watching,, that a large segment of the population of the US isn't all that keen on the ideas expressed by Jen. Who aren't willing to "support" others less able. It' isn't who "I" am,, but it is apparantly a big part of who "WE" are.

Bev continues to talk about how there is "help" available,,,,, but watching posts, here,, about inability to access aid,,, seeing people losing their homes largely because of unpaid,,, unpayable,, medical bills. How do you keep someone at home,, when they have no home. When their family has neither the room,, skills,, finances,,, or often,, the will, to do it themselves?

Don't you think there's a reason for so many people "being" in these nursing homes, in the first place? These homes fill a need,,, and that need will continue,,,, to think otherwise is at best naive,, and at worst ,,, well,, I won't go there.
Bev,, when you"re well enough,,, and I hope that is soon,,, I wish both you and Tin the best of luck in your efforts,, as for me,,, I'll do my best to keep myself and my wife where we choose to be,,, to help my children when they need it,, to aid the rest of my family,,, and to help others along the way. And all of it IN THAT ORDER. In life,, one sets priorities for themselves,,, the same goes for governments. I had hope for ours, when we ellected our last president,,,,, it has that hope has faded some over the last couple of years. We,, as a population,, seem to have good intentions,,, but very little resolve.

In the end,, in looking to the government for help,,, it's more likely to get regulation out of them than money. You gotta work with what you can get.

Please understand that I both respect and admire your goals, and I agree that they would be what we should aspire to,,,, it's just that I put their chances of happening up there with "THE CURE" .
ed

[The Black Sheep]

When I went to rehab, I was the youngest patient EVER, at 13. My roommate was 33, which was the only other person that was under 65 there.

I understand why the scenario is the way it is, and you usually don't find many youngins with spinal cord injuries, or at least not when you compare that population to the population of dependent elderly folk. It's not a wonderful outlook - rehab, but young disabled folk aren't THAT common either.

Edited by The Black Sheep, 11 January 2011 - 08:21 PM.

[Tinbasher]

Jenny "People who wished some kind of around-the-clock professional care."

The idea that nursing homes provide professional or round the clock care is a myth. Even in a highly regulated system night time cover can be as low as 1 staff member to 30 residents (I choose not to use the word patient because most are neither sick or having treatment). The professionalism of the staff is also highly debatable, they tend to be paid mininmum wage and are often overseas workers who have little or no cultural connection with the residents. A recent contract I tendered was bid for by a company who wanted to "import" the entire staff from Nigeria except the manager. This isnt a dig at immigration I know that these staff can be caring and respectful at a one to one level but "cost effective" staff ratios don't allow the time.

Ed " it's just that I put their chances of happening up there with "THE CURE" ."

Properly resourced support is not just up there with the cure it is an integral part of what will be the real cure. By that I mean a society where those who cannot be physically cured are supported so that they face as little disadvantage in society as possible.

It may be naive or utopian but we change society all the time, we see and challenge wrongs. If we did not then your own country would still be paying TEA TAX and looking forward to the wedding of YOUR Prince William and you wouldnt need nursing homes you could just but buy a slave or two

Most people in nursing care have "chosen" to be there but it was Hobsons Choice.

Tin

[Jok]

In the middle of the last century people with disabilities were automatically shut away in dreadful conditions. The status of the disabled may have changed slightly but the conditions have changed very little

Thank you Tin

I salute you who constantly strive to ensure the right of people with disabilities to live their life with support at home.

[greybeard]

Properly resourced support is not just up there with the cure it is an integral part of what will be the real cure. By that I mean a society where those who cannot be physically cured are supported so that they face as little disadvantage in society as possible.

We may consider that a laudable goal, which in a just society would surely be achievable. However in our society, where the majority believe that we would/should be able to walk without assistance if only we made a little more effort (or prayed more!), and a government that believes that we gimps should be in work and not "scrounging off the state, it's difficult to see where the will to bring about the change you dream of is likely to come from.

[Tinbasher]

Just because things are difficult to see does not mean they dont exist. But in the current political climate I accept it is mountain to climb.