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unbelievable and hurt

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Old 01-23-2007, 08:44 PM   #1
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Jess22 HB User
unbelievable and hurt

I really need some encouraging words right now from all of you. I think my last post explained how busy we have been remodeling etc and also mothers dilemma with meds and behaviors etc. A few weeks ago the Nh home where she has been for the last ten months asked us to provide a private sitter for mom around the clock they said she has become to time consuming for their provision because of her always trying to get out and aggression. Yet when we visit she seems usually in her room and groggy lately. We told them we could not afford that as mom switched from private pay to medicaid pending in Nov.
Since Nov. mom has just progressed and gotten worse in every way according to the DON and Administrator.However, according to several nurses and aides they dont see much change in her and frankley they have called us less in the last month than any month since she has been there. Her doctor has tryed working with us and them and frankley told me that he never hardly gets complaints from them and he visited her saturday and they said she was fine. HERE GOES!!!!!!!!!!!!!!! on Monday at 10:30am they called me and my sister both at work and said we had to provide a full time sitter by the afternoon or they were going to have to demand us to relocate mom to a locked facility. We called the doctor and he called them and to our dismay he called back and said because they are privately owned they have the right and so he cant do anything. They told him we had 48hours to find her placement. We are exhausted and we have no facility that will take her within a three and half hour span. Six wanted private pay money for a specialized unit and several havewaiting lists miles long!!!! We had all her records faxed today to our local NH locked unit ( which we never wanted to place her in) just so we could possibly get an opening someplace. They HAVE FOUR PEOPLE IN FRONT OF HER. They are discharging her as Combative and Aggressively Wandering trying to get out. No one will take her in a regular facility without a locked unit because of her discharge so we have to pick her up and IM now on leave from my job rushing to finish my house and the doctor has got them to give us until Tuesday next week because of our situation. He told me that he will remain her doctor Im suppose to journal all her behaviors, meds, diet, sleep patterns etc. and callhim every day at five and give him a report. He says we can wean her slowly from some of the meds and try to get her lined out enough to be replaced in a regular facility here locally. Im scared to death!!!!!
It's been ten months since mom has lived with me, sometimes she thinks Im her friend, Im afraid she will constantly try to get out and she is not always stable on her feet. My sister swears she will help me this time around????? I have my son at home who watched her for two years and he's as scared as me..... also my work seemed understanding but today when I went to collect some of my private papers my new replacement starts in my spot on monday and they were a bit cool to me which hurt my feelings although I know they are tired of all the crap I've had to endure and put on them through the last three years. The last two yrs. mother was with me got so bad at the last I was always having to leave work etc. because of caregivers and her behaviors. I feel like I have no choice and yet a small part of me is glad to be able to spend some time with mom without always feeling rushed or so stressed. The last time I had her I was working 45hours weekly and managing caregivers etc. and taking care of her at night, and all weekends etc. Can anyone give me a success story of taking care of their AD patient????? Im in need of strength. Im only going to do this temporarily until we get her straightened out and then we can find placement. The doc says he thinks we will do better one on one than dealing with so many nurses, and aides etc. Please help I'll need you guys for support for sure now.

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Old 01-23-2007, 09:30 PM   #2
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Re: unbelievable and hurt

Get on the phone to the state long-term care ombudsman ASAP! An ombudsman advocates for the rights of residents in long-term care facilities. The Ombudsman works to uphold the legal rights of residents of facility-based homes and consumers of home care services; assists consumers of any age denied admission or threatened with transfer or discharge; and assists in resolving concerns about all aspects of long-term care. Every state has a long-term care ombudsman, it is required by federal law (Older Americans Act)

Call the Medicaid office in your state and find out whether or not the facility can force you to move your mother out this quickly. Call the state department of health that regulates and licenses nursing homes. It doesn't matter that they are a "private" facility, they are licensed and have to follow the law.

In my state (OH), when a facility wishes to discharge a patient because of unruly behaviors or whatever, they are obligated to provide a "thirty-day letter" advising you that you have 30 days to find a new facility. You have 10 days to challenge the discharge by filing a written request for a hearing with the state dept. of health, and then an independent hearing is scheduled.

It is the facility's obligation to assist in finding an alternate placement, since they cannot discharge someone to the streets or to a knowingly unsafe condition. If they are telling you that your mom requires a locked or secure facility, and you cannot provide that at home, I don't believe they can force her out, as it would be "neglect". I would also call Adult Protective Services and file a complaint.

If all else fails, get a phone consult with an elder law attorney to see what other recourse you may have. Good luck and be strong - you know you have your mom's best interests in mind!

Last edited by buckeye1; 01-23-2007 at 10:17 PM. Reason: clarify information

Old 01-24-2007, 12:48 AM   #3
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zonk HB User
Re: unbelievable and hurt

Jess, have you already decided to have her home without a fight?
buckeye has some excellent suggestions, and if you are fearful that you cant keep her safe, then I would follow through with those suggestions
Her safety is paramount here, If a team of professionals cannot cope with her, how will you manage to do so?
so you have until next tues:tick tick tick goes the clock, what happens after then if you are not there to pick her up...what does the NH do then?
Discharge where????! (they cant MAKE you go pick her up)
Weigh up your ability to cope, remembering that she has had 10 months of NH care and that THEY cant cope

remember that you have no foreseeable permanent placement in a lock down long could it take...months?
will you lose your job?
it worries me that the doctor has suggested weaning off meds to get her "straightened out" for placement in a normal facility because you said
"No one will take her in a regular facility without a locked unit because of her discharge"
so can you get placement in a normal facility...or not?
so how will "straightening her out" help?
its such a vague term, and after all, she does have dementia and WILL continue to matter how the meds are fiddled with.
angel bear had a similiar scenario, once her MIL was placed, the NH demanded that she come and get her because they couldnt cope...I do hope she replies to this thread.
may I suggest you go back in time and read all your previous posts (I havent read yours but I bet I can imagine what they are like)
You will then remember what life was like caring for mum
do you really want to go back there?
I placed my mum permanently 10 days ago in a lockdown unit but am hoping that she will be moved into the general high care wing after assessment because she does not wander,sundown, become aggressive or combative (at least with me)
she is like a helpless kitten with REALLY good manners.
Ironic hey?
Here is my mum in a lockdown unit me, hoping she can be transfered into to the "normal" wing
There`s your Mum in the normal area needing a bed in the lockdown unit
(big sigh)
Big decisions to be made, make them with your mum`s & your welfare a top priority
warm regards,

Old 01-24-2007, 03:37 AM   #4
Martha H
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Re: unbelievable and hurt

In your case I would speak to a lawyer. Ask him/her what the rules are. I was under the impression that a NH can't kick someone out until there is an alternative. That means giving you several weeks to find a new place, not a few days.

My advice is do not take her back into your home.

The NH cannot put her out on the street.

It sounds like someone there is not satisfied with the amount of money medicaid will pay. That may be the real reason to have her leave, since the personnel doesn't complain about bad behavior. I am so sorry this is happening to you and I am appalled by the NH's behavior.

Speak to the administration again. Tell them we are working on alternative placement but have not found anything yet - therefore THEY have to keep her. It is not possible to have her at your house. Period.

Good luck. My goodness, isn't it hard enough to have a loved one with this disease without being insulted and misused by the very facilities supposedly there to help her?

What is wrong in this society?

I pray for you that a quick solution will be found.



Old 01-24-2007, 03:42 AM   #5
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Min2003 HB User
Re: unbelievable and hurt

Jess - Take a deep breath and know that all will fall into place. Good suggestions were posted. Print them out and read them carefully. Don't let the NH push you around. Start making those calls. Get a notebook and make notes. You need to know what all your options are. First question, would probably be... can the NH do this? and don't be afraid to get angry and show it!

I put my Mom in a NH on a friday. I visited her every day. (she lasted only 4 days!) They did not provide the two things that they said they would. Allow her to walk around and provide a spanish-speaking person. ...and i believe they changed her meds! By Monday, they called me to say... your Mom is aggressive, combatative, she is hitting, we are transferring her to a Psych hospital. I said "no way". I quickly took her back to her home the next day to my Dad and was able to re-activate (it was still active) her health aide care 9pm-5pm. I got a note from my Dad's doctor saying he was sick himself and could no longer care for my Mom at night alone. Mom was then approved to get 24-hour care in her home thru medicaid! We are having other problems now but I am glad I was able to get her back in her home where she is getting one-on-one care. This is my story. As the daughter, in NY anyway, I am NOT legally responsible for Mom... if she was living with me, I may have been able to get 24-hour care a long time ago. The key is to talk to many people and learn how you can get things done your way. Don't trust the NH to be truthful in what other avenues there are for you and your Mom. Sounds like they want to dump your Mom on you. Good luck and keep us posted. (i hope i made sense here.)

Last edited by Min2003; 01-24-2007 at 03:44 AM. Reason: grammer

Old 01-24-2007, 01:12 PM   #6
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Exclamation Re: unbelievable and hurt

You have another phrase to put to this nursing home ........


They can, AND DO have the ability to keep your mothers safety in their best interest. Imagine their horror if you should say "won't the newspapers have a field day if you turn my mother out on the streets". It is against the law for them to threaten and intimidate you. Stand up and fight woman!! How many other people have they done this to because they were difficult?

Try it .. I bet they'll go out of their way to help you.

Now .. as Zonk said, I had a similar experience. My ex-charge had been assessed as "not so bad" by the ACAT team (Aged Care Assessment Team who do the initial assessment before being placed in care or having home care needs taken care of) because they were intimidated by a family member who was quite determined that my ex-charge WAS capable of looking after herself. Now because I was going insane and needed a BIG break and because nobody was willing to stay with my ex-charge I was offered Respite Care. ACAT said that the Respite Care would be 'temporary' but only so my ex-charge could actually be assessed PROPERLY in a foreign environment without any outside influences. They said this NH was perfect for her and yada yada yada yada yada.

ACAT picked my ex-charge up from her Adult Day Care and took her to the NH where I had already placed her clothes, trinkets and goodies earlier. She settled beautifully. They all thought "oh .. this is easy" .. but then she started sundowning, and then she realised that she was staying (because even though she had been told 600 times by lots of people, she still didn't get it) and THEN ....................... the real behaviour came out ............... and it scared the willies out of them!! Good heavens, if the PROFESSIONALS couldn't cope with her, who in their right mind thought I COULD??

I felt JUSTIFIED because I KNEW how she was but nobody really quite believed me!! But I also got the phone call the next morning to come and get her. Well, I held my ground, I cried, I explained my plight and then I mentioned DUTY OF CARE. They backed down and said they would keep her for another night but something had to be found. Well, between ACAT and the NH the RIGHT facility was found for her respite to continue. I tell you, when I said I would not be held accountable for what I may do to her if I didn't get a break ........................ I'm telling you now, if I hadn't have made a fuss, If I had have just accepted their stand, she would have been brought home, we would not have had a holiday and I would be 6 feet under by now.

Why? Because if I had have brought her home it would have meant I was coping. I wasn't coping, but that's the message that would have gone back. Oh, she's willing to take her home again, so it can't be that bad, and all my hard work in getting the right assessments and chasing doctors and professionals would have been in vain.

On the next note, we DID get to have our holiday where we were completely incommunicado for 2 weeks (sorta .. I did find a computer once) and on our return we had to bring my excharge home .. we were told for 6 weeks until permanent placement could be found. I was hysterical, but understanding, so we took her home, and as luck would have it, the NH rang the next morning and had a permanent place for my ex-charge right then, right now.

My prayers were answered with a miracle .......

So, stay strong, be firm, get your facts (ring all those people buckeye mentions) and remember : things WILL turn out .. just don't sit down and give up OK?

Big strong hugs


Last edited by angel_bear; 01-24-2007 at 01:16 PM.

Old 01-28-2007, 11:16 AM   #7
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Re: unbelievable and hurt

I'm so sorry I haven't been able to post in a while due to ongoing problems with this site not recognizing I'm registered until I change my password again and again and again.

Anyway, big hugs to you. I must admit my thoughts on the NH administrator's complaints seem to be with the lack of money medicaide provides as opposed to private insurance. It's a fact that most private insurance pays more than the standard medicaide payout. In other words, the more beds filled with private insurance patients, the more cash flow the NH has.

The administrator knows he/she can't just discharge your mom. That's why he/she said you had to get a round the clock aide for her. They would still get their medicaide money without having to pay as many people to care for your mom. Since they know you no longer carry insurance for your mom, they're almost certain you would take her home. Viola! More money for the NH. It's a win win situation for them. So the only one's losing out are you and your mom.

You've been given a lot of good, sound advice here. You are your mother's best advocate. Do what you feel is right for her AND you.

I wonder just how many other people this NH has tried to strong-arm......

Love and Big Hugs,

Live, Love, Laugh.

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