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Thread: No choice but a nursing home

  1. #51
    Nursing home:

    I faced others who became infected with scabies, quarrentine of my clothing and everything all my posessions i had in my room, residents not allowed to get dressed, just wear robes or even leave to go outside. nurses forcing me pills I didn't need, doctor handing me a sheet on autonomc dysreflexia that I gave to the physical therapist, who gave to the doctor. DUH. tHEN, an episode of autonomic dysreflexia while they were pushing me down the hall in which i then had a seizure from AD and bit part of my tongue off, as i then got six stitches in my tongue only because they wouldn't cath me as i did intermitant cathing at the time. i was forced to go to the dining room when everyone else did, forced to go to bed or take showers at certain times, etc. Yes I fought back, and your darn straight i in the end nobody controlled my care but me, just as u say you will. I learned the word Ombudsman, just as you will, but why put yourself through an institutional situation when you don't have to. it is just plain crazy. crazy. i could go on and on........

    You want your assests ate up? Check in, you'll find out. You want to live their on Medicaid? Your care will be worse, I dont care HOW fancy the place is. you want abuse? fine, waste all your energy, and sue them. i guess thats how the world roles these days. too bad theres no integrity left in some people. Sue them! your a quad right? it takes a lot of energy just to live. why waste it, on needless issues.

    there are independent living centers in your state that can help you learn about options. counselors, peers, ect. take advantage, then if you arent satisfyed, check in.

    I dont talk a lot about my experience because it was so bizarre. so bizzare. oh well, it doesn't matter anyways i spose.

  2. #52
    I agree with Liz and SCI-Nurse KLD here:
    Quote Originally Posted by SCI-Nurse
    I won't lie to you. Most nursing homes are hell [even] for someone who is alert and oriented. You can serve as an advocate for those who cannot speak for themselves there, but you will find they think you are a "trouble maker" even if you speak up for your own needs. Use your time there to make specific plans to get OUT. (KLD)

    How does one either become an "Ombudsman" or at least get involved with them? I am very serious here. Thanks In Advance!

  3. #53
    Quote Originally Posted by quadvet
    How does one either become an "Ombudsman" or at least get involved with them? I am very serious here. Thanks In Advance!
    Contact info:

  4. #54
    Senior Member justadildo's Avatar
    Join Date
    Mar 2005
    rocky mountain high
    EXACTLY what LIZBV said, thanx for saving me the typing liz

  5. #55
    In my state, ombudsman training is provided by the state Dept. of Health. I have several nurse friends who took this training after retiring and provide ombudsman serves at local nursing homes. The nursing home must post information on how to reach the ombudsman, and they make regular visits for both individual and group meetings. Know your rights in your state, and be sure that you stand up for them. Work with the ombudsman, esp. if you find that the leadership staff (head nurse, administrator, etc.) are not open to your input and needs.


  6. #56
    Agreed about the quality of care in a nursing home. My wife was in one for about 3 months following her first back operations. It was a relatively good place - I know of some that are for sure much worse. But when you need help and push the call button, you may wait for a half hour or more before someone shows up. You need morphine for breakthrough pain? By law, you cannot do your own medication (at least here in Oregon). So you push the call button and wait. Eventually someone comes and asks what you need. They go off and eventually will find the person who does the meds (unless they are distracted and forget), but that person is doing her rounds in the other wing. You may be waiting for an hour or more, and you hurt now, that's why you pushed the damn button!
    If you leave your room for a bit, some other patient (mentally disturbed; Alzheimers, or whatever) may well wander into your unlockable room and poke around. There'll be a screamer or two down the hall. Some caregivers will be very nice, some rough and uncaring - they're paid peanuts. You live according to the home's schedule, not yours. And it is bloody expensive.
    It's like a whole other world; you don't really want to be there any more than absolutely necessary. And that's for a relatively good place. In a poorly run place, plan to get a pressure sore or two, to not get the meds you need on a timely basis, to "lose" personal effects, to have rude attendants,....
    KLD's statement "use your time there to make specific plans to get OUT" is spot on the money.
    - Richard

  7. #57
    Senior Member zillazangel's Avatar
    Join Date
    May 2004
    North Carolina, USA
    We are hiring a new attendant, Andre (I'll talk to you tomorrow), we can double advertise and find two, one for you, one for us. We know what to ask etc.

    Wife of Chad (C4/5 since 1988), mom of a great teenager

  8. #58

    Let me tell you a few things about nursing homes. My brother has been living in one for 2 1/2 years post SCI Quad C5-6. Presently, I have finally made my way to the top of the Medicaid Waiver list for sitters in the HOME. Working on his application to be MOVED OUT of nursing home as we speak. We are in the "best" nursing home in our parish (I'm told) as far as care and cleanliness are concerned anyway. Here are some facts I've seen firsthand:

    1. No-one (except those few "jewels") from the administrator down to the lowest paid "sunshine girl" cares about anything but their paycheck. They all gripe among themselves all day about how overworked and underpaid (and it's true) they are. They are there to get by on a measly paycheck, that's all.

    2. 95% don't even know what dysreflexia is, much less how to address it when it happens. The same lack of knowledge for all care related to spinal cord injury.

    3. LIZBV said it well ..... they hand you medicines you don't want, make you conform to their scheduling, call you a troublemaker when you want some dignity, scream and holler at you when nobody's looking, jerk and snatch on you when you make them do something for you, never answer buzzer timely (you could die before they arrived). Heck, lately the aides have even told my brother that he's only got a "few friends" left there and he'd better "behave" himself. Administrator told me just last week (when I went in her office to ask about a problem they were having with my brother "praying" for one of his buddies there - said he was "impeding the care of others" when he asked for assistance for his friend who was drowning in his own saliva) that if it weren't for the state MAKING them keep my brother, he'd already be history. They did try to evict him based on his "troublemaking behavior" and I put a stop to it because I didn't have anywhere else to put him at the time. The omsbudsman sometimes seems to be on their side as much as she is on yours. My brother swears she's paid off.

    4. The aides are usually a class of people that could care less about their own relatives, much less you. The good ones that are genuinly caring often leave when they see the neglect and abuse going on. Heck I've seen aides working in the dollar store and McDonalds after they'd left that nursing home. You see an ad in the local paper every week from all three nursing homes in our area advertising for LPN's and aides. ALL THE TIME.

    5. They will walk in my brother's room with his food trays, leave them on the bedside table and return about one hour later to retrieve them, asking "you weren't hungry?". His reply "I can't move, how can I feed myself?" With NO offer to feed him (when nobody's looking, of course) There are very few times I don't have someone there with him and it's worth every penny I pay them for the security they provide me. He doesn't make enough money to pay for the sitters AND all that goes along with household bills. Nursing home gets all his income, his sitters are paid by my family's donations. No money = no sitters, but usually that's not the case.

    6. No commode chair - too much trouble to put my brother on one and wait for him to get through. He must use bathroom in a diaper in the bed on himself. THIS is the one most undignified thing he's had to face while in the nursing home. He hates this. Once, I found a commode chair with a reclining back in the nursing home stuck in a corner. I demanded he be put on it for his next bowel program. They did it - I wasn't there. They left him sitting there with his feet dangling for 3 hours. I walked in the room, he was crying sitting on that commode chair with the aroma of crap all around saying he'd been begging everybody that walked by to please help him off that chair. I pitched a fit and got him off alright, but never asked for him to be put back on it, heck he didn't WANT to be back on it at that point. Too scared.

    7. You'll probably be in a semi-private room too. May have an alzheimers patient next to you in same room running over to your bed with a pillow in his hand moving it wildly towards your head. Don't know what he's saying cause he's mumbling - don't know if he's gonna put it on your face and smother you or what. Then he jerks the pillow that's been placed between your crippled legs away and throws it across the room. This just happened this week - had a sitter there who rushed to help. You complain about it and they'll put someone you like less there. The old man is sweet, but just has alzheimers. My brother said he'd rather run the risk than be stuck in the room with some old person who screams and hollers all night.

    And the list goes on and on. This is what you can face when in a facility of this nature, but if it's the ONLY option, you will have to be strong enough to go and overcome it. Good luck in your endeavors.


  9. #59

    This Is For Quadvet

    I'd LOVE for you to become an omsbudsman! If you get your omsbudsman's license (or whatever), please come to the state of Louisiana to work! I'd love to see the house when you got through cleaning it!

  10. #60
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    I was thinking about this the other day for some reason... You have children? Where are they when your wife is acting like that? Observing abusive behavior is worse than bad for them too. I know caregiving is hard and have tried to slowly add more of the detail work of keeping the home and finances going like figuring out firewalls and such for banking, got a pup we're training to be a service dog and also a great way for the spouse to get out of the house for a fast 30 minute walk twice a day before and after work. He hates the detail stuff and he needs the exercise! I miss not having kids but sometimes I guess it was for the best.

    I get the idea that you and your wife married after your injury? That is the only reason I can think of for your finances arranged that way. If that is true and the kids are hers, well, I'd let them all pack their bags when Amiee finds you a caregiver. But if you do the NH route do check out several in your area and also near your parents. You may not be able to use their help as caregivers but believe me, they will want you near to visit you and they can help with private errands and such. Any updates, Andre?
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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