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No choice but a nursing home

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    Yes, it is abuse. My parents are too old to take care of me. I have to get out. Even if that means a nursing home. If I get mistreated there I can sue the shit out of them. I can work and get back on my feet-I think.


      There are some decnt nursing homes out there for younger people. The Lorien chain in Maryland tries to get those who are not senile, on the vegative ward, or just too feeble out on their own again. After my husband needed a qucik trip to the ER and a 3 day stay we realized that my back up agency's idea of 24 hour assistance was someone answers the phone at midnight not that they start looking for a CNA for you right then.

      We started with a few good questions: what if he gets real sick, becomes disabled himself or dies? I know a few friends who could help fill in till I had agency help but I don't want to live here if he were to die. So we checked out nursing homes that I could go into until I had arrangements to move back to where I grew up and had a house fixed up for me and caregivers. Just opened the phone book one Saturday and started visiting places with no warning. What a shock. Glad I'm not Catholic. One other one run by a church wasn't too bad but no young people at all and no ideas on how to stay busy but read and TV. Bus to a nearby college? No..

      Then one rainy evening we walked/rolled into Lorien. They had modem hook ups and the former PT now running more beds then the private hospital was planning to go fiber optic and this was 3 years ago. He was converting one entire ward to single rooms with their own showers. It would be for respite and for longish term younger people. He insists new residents read the material in the lobby about the waiver program. It didn't smell and that day he had an extra 21 people because the storm had knocked out the top floor windows in another home.

      I explained what I was looking for and he said for respite or short stays for caregiver illnesses I'd be in that respite ward. For longer term he'd put me in Harmony Hall Assisted Living next door and send a nurse over for BPs and such as needed since I was more than lucid. College or things to stay busy? "We have small buses and vans but you can sign up for the local paratransit if you are in assisted areas." Cool. Help with long distance change of assets, selling current home, etc., if Jay died on me? He said he have a list of eldercare lawyers, could help me arrange for my bank to send someone here (the NH), etc.

      Yea, sometimes when you need transition help NHs can help. Just scope them out before you need them.
      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.


        Originally posted by Acarson
        I can work and get back on my feet
        Of course you can! With your education and background, there's no reason that you can't get yourself back on track. It won't be easy, but I bet law school was no picnic either.



          Originally posted by Acarson
          Yes, it is abuse. My parents are too old to take care of me. I have to get out. Even if that means a nursing home. If I get mistreated there I can sue the shit out of them. I can work and get back on my feet-I think.

          As much as everyone knows a nursing home isn't ideal, this statement you made is precisely why you can take comfort in knowing that it is a better situation than the one you are currently in and a temporary solution. I wish you the best, I know you need to get out of the dangerous and abusive situation you are in. I hope you are able to find a place like the one that Sue P wrote about. I also hope that you'll be able to continue working while in the N.H.. Ami is an extroardinarily wonderful person(I knew her before she came to CC) please call her & take her up on any offers she's given...I wish I was closer, I'd come visit...Matter of fact, I will visit in the fall if my NC trip comes together, it's only in early planning stages now...

          Keep your spirits up, use your legal contacts to get processes moving to only be in the nh as long as necesary and keep updating us...
          L-1 inc 11/24/03

          "My Give-a-Damn's Busted"......


            Hey, Andre. Glad to see you post.

            I understand why you are opting for a nh until you get back on your feet. You need immediate relief from a most desperate situation in which you are abused body and soul.

            Instead of saying I don't understand why your wife is doing what she's doing (I don't) or shifting the blame to "caregiver burnout" (It doesn't get the blame. Your wife does), I'm saying I trust your judgment to make the best decisions you can for you given your situation and immediate needs.

            Just get safe first. Then, continue working and making immediate plans for your transition to your own place with your own caregivers. You'll be able to safely explore these avenues once you're on safer ground, a place other than with your wife.

            You have placed your assets with your wife for a reason. I'm sure you've looked into special needs trusts. Whatever you're doing with your assets for whatever reason or reasons, think of yourself first and foremost. Yes, you have children. I'm assuming they'll be in the house with your wife. They will still have a home. For now, you're trying to find yours, find a place that is safe and yours.

            Keep talking to us. This thread is about you, not about the why's of what your abusive wife is doing. I get that she's an abuser. "Caregiver burnout" doesn't explain a damn. It's never, ever okay to hit. You deserve far better than that.

            I'm not going to encourage you to work it out with her or not work it out with her. She abuses you. I get what you're saying. You need to be safe.

            Whatever you choose to do for yourself, I support your decisions and will to the best of my abilities.

            Hang in and hang on. First things first: Get and be safe. 9-1-1 to the nearest e.r. is always an option should it occur again (unfortunately, odds say, "yes" ...) or get further out of control between now and when you go where you're going.

            Sending **hugs** and good thoughts to you.


              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.


                I agree with Liz and SCI-Nurse KLD here:
                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!
                get busy living or get busy dying


                  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:


                    EXACTLY what LIZBV said, thanx for saving me the typing liz


                      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.

                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                        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


                          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



                            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.



                              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!


                                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.