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LynAlone Asked October 2013

Mom with dementia in NH on Medicaid is 300 miles from me. Can I have her moved closer to me?

We live in New York and my Mom is on LI and I live in CNY 300 miles away. Her dementia has gotten pretty bad and she has always hated where she is. Now she has become abusive to the aides. They pretty much do the basics and stay away from her. I used to travel to see her and bring her here for visits. But because of my own health that isn't possible anymore. I have a brother 15 minutes from her but he only sees her on holidays. Takes her out for 3 or 4 hours and brings her back. He wont even go into the NH. In August I sent my 21 yr old daughter to bring her here. She said my mom's room was disgusting and my Mom was a mess. She was dressed for winter and her clothes were filthy. Her nails were broken and dirty. Her hair hadn't been cut in months and had knots in the back. None of that compared to her mental state. She was incontinent, couldn't dress or wash herself, didn't recognize any of us and just sat there. With a walker she was barely shuffling and almost fell numerous times .My husband took her back the next week and her room was filthy. Her draws had dirty clothes and other peoples clothes in them. Long story short or shorter I should say. The NH filed chapter 11 three yrs. ago. Then they fired almost everyone. Now it's a whole new ballgame. The nursing staff is never constant and when I can get in touch they say she's fine or the same. The social worker NEVER returns my calls. When I ask to speak to a supervisor no one is ever there. Example after finally getting to the social worker I asked for a nuero consult. He took her off all her pysch meds. she's been on for 20 years. That weekend I get a call at 7pm on Sat. The nurse in charge wanted me to know that my mother was acting eradictly. When I asked her if she knew about the meds. she was clueless. Then when I called back on Monday the nurse on staff said they don't look at the charts. I could go on but needless to say I still haven't gotten any results on my mom's so called eval. Last weekend my aunt & uncle went to see her. They live 2hrs. from her never drive there but she's not answering her phone anymore so they went. They won't be going back again. She was dirty, her room was filthy and when my aunt tried to clean up and put her clothes away the aide told her they weren't her clothes. She's been going around in her wheel chair stealing other patients things. Her glasses were twisted and broken and barely able to sit on her face and when my aunt asked about them they aide shrugged and said she sleeps with them on. That my mother is nasty to them so they let do her own thing. In what world do these people live in? I have volunteered my whole life, taken care of hospice, elderly & mentally ill people. I couldn't live with myself no matter how nasty the person was. I have an Aunt who was a nurse in a nursing home for yrs. on LI and now lives in Fl. She says my mom is being abused but being so far away I can't control it. My brother won't do a thing to help. If I could take care of her I would, but I can't. She has no poa as my brother never filled out the paperwork. Which I just found out, I am her hcp. I'm sorry for the rant... but at this point I'm beside myself... How can I get her out of there & closer to me?

EXPERT Carol Bradley Bursack, CDSGF Oct 2013
Don't be sorry for the "rant." You had a lot to say and this is the right audience. I'd advise you to contact the Medicaid people in your state and ask how this move can be accomplished. So much with Medicaid depends on the state and how open they are.

As far as the nursing home your mom is in, you can go to www.ltcombudsman.org and let them know about her condition. Type in the Zip code of the current nursing home. This contact may also be able to advise you about the chances of moving her.
Good luck,
Carol

igloo572 Oct 2013
So mom is in New York state and on Medicaid. You also live in New York state too. If that is the case, you can easily move her from one Medicaid bed in a NH to another Medicaid bed in a NH closer to you as far as Medicaid is concerned. I moved my mom from her NH # 1 (many issues ranging from incompetent administrative staff, to other things that involve a Stark complaint) to her now NH #2. Was at # 1 less than 1 yr & now @ # 2 for almost 2 years and went on hospice @ the NH in June. Medicaid is not going to be the hurdle, it's finding a NH that is.

First of all you need to find a NH that has:
1. an open Medicaid bed available. I'd be very blunt on this and ask how many beds they currently have. All this takes time and if they only have 1 bed, someone else is going to snag it.
You will need to complete whatever application the new NH requires for a transfer. For my mom, it was a simpler application but again had to provide a current copy of my mom;s SS benefit letter & her retirement benefit letter and her ID. Also had to provide my DPOA, MPOA stuff. Also had to do a transfer request so that the new NH had my request in writing for them to go to see mom at the old NH.
2. the new NH will send an RN & SW to the old NH to do an evaluation on your mom to see if they (NH #2) can provide the level of care that mom needs. If the new NH is part of a larger group, they may have a facility in the area where NH # 1 is, so that the RN & SW from their sister facility can go to do the evaluation on mom. Otherwise it is going to be harder, I don't know how this works if it's a far away distance.....you may have to private pay for the evaluation, you need to ask about this. The RN & SW at my mom's new NH, just drove to the old NH. I as mom's DPOA did a form to allow for this. IF the possible new NH, determines they cannot provide the level of care she needs, then you have to contact other NH. Now it sounds like mom is a real mess and doesn't "present" well, so you kinda have to go and get her looking good for the upcoming evaluation from NH #2. My mom has Lewy Body Dementia and for the most part seems very cognitive and she is pretty easy to work with as she is petite and is one of those 90+ year olds that look waaaay younger and is "user friendly" as she needs minimal help (at least at the time we did the move).. Alot the the evaluation is medical but there is a whole subjective aspect to this, that you cannot overlook. Think of it as prepping for a 1st date or job interview. Clean up her current room too.
3. if the new NH have room & accept her, then you formally submit a letter of transfer to NH # 1.I faxed mine, the afternoon they evaluated her and told me she was fine for them. Medicaid rules in my mom;s state allow for this to be done without penalty.
4. move mom - more on this below.

Now for us, my mom moved within the same city and NH # 2 had as it;s medical director an MD who is in my mom's old gerontology practice (as was the case for the medical director @ NH #1). So all her medical files were easily accessed by NH #2. You are not going to have this, so it will be harder. You may have to actually have mom seen by a MD at his/her private practice who also is the medical director of the NH you want to move her to in your area. Maybe not, but if you run into problems in all this, you may have to go that route to find her a place.

on 4. move mom. Couple of issues, you have to get all of mom's med's. These seem to be issued in 30 day blister packs under Medicaid. They will be in some sort of hanging bag @ the nurse's station or in a locked medicine closet. YOU HAVE TO GET ALL MOM"S DRUGS!. Medicaid is strict on only paying once a month for meds's. So if you don;t get them, you will have to private pay for their replacement. This could be very expensive depending on what she takes. I was total bad bitch in insisting on getting all my mom;s drugs. Even took zip locks & sharpie markers for them, which was good as the RN said they had nothing to put them in and just scattered them on the countertop.

About her room, unless the items have great sentimental value, I'd throw most of this stuff out and just start her anew in clothing, linens, etc. You want it all to be as good as a first impression of her at the new NH. Make sure everything is marker with her name.

About Medicaid, my mom's state program pays for the NH reinbursement on a daily basis. I bet NYS does too. I would suggest you move mom right about the beginning of the month. Maybe the 5th. You figure out mom's required Medicaid co-pay based on the # of days that month. Then pay each NH their share. Say mom get's $ 1800 a month co-pay. It's November and a 30 day month. Mom's day rate for her co-pay then would be $ 60.00 a day. She moves out on Nov 5, so she owes for 4 days at NH # 1 = $ 240.00, then $ 1,560.00 as her co-pay to NH # 2. You don't want to move her later on in the month and have to try to get the funds back from NH # 1 as I bet then will not be very easy on doing this.

My mom;s NH #2, let me come the late afternoon before and move her stuff in...like linens on bed, photos & clock up and chest of drawers in. Most of her clothes I got out of old NH in advance of the move too, so the actual morning, it was just a small backpack of stuff, TV, her & her meds, her walker. New NH required she be there by 11AM so she could have lunch with her section at noon. All in all it was pretty easy but lots of pre-organization. I did leave stuff @ old NH too like too worn clothing, old shoes, plus books & magazines (heavy, heavy).

Good luck and start calling NH sooner the better.

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Eyerishlass Oct 2013
I'm so sorry that your mom is in such awful shape. You must feel very powerless.

You asked how you can "get her moved" closer to you. I don't know any way other than to move her yourself. I don't know if you can hire someone to do this for you, maybe someone else might know. You might have to find a NH close to you, make all the arrangements, then go to where she is, pack up her stuff, and take her to the new NH. It sounds like she may need to be placed in memory care.

Your brother: he's closer. Why isn't he helping out more? I know we can't force people into helping if they don't want to help but have you spoken to him about this? I always assumed that my brother wouldn't help. For years I assumed that. It turns out that it's not that he didn't want to help, he didn't know how to help and he assumed I would ask him for help if I needed it. Once we got past all of that he was a tremendous help and we became a great team.

Unfortunately, when a NH resident is combative the staff do tend to leave that person alone more than they should. It's just the reality. Is it the right thing to do? Of course not but it's typical.

When my dad was in a NH my experience what that the right hand had no idea what the left hand was doing most of the time. I ran around in circles while he was in a NH, stressing myself out to no end and not realizing that NH's are a black hole. No one knows what's going on, there's no continuity of care, and unless the family screams for help and answers over and over, very little gets resolved. I'm sure there are some exceptions but this has been my experience with my dad in a NH and working in home healthcare myself.

But if you want to move your mom closer to you the first thing you need to do is find another nursing home in your area.

Good luck, Carol.

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