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As I returned my mother to her nursing home last evening, I stopped by the nursing home to sign her back in. I had to borrow a pen from the nurse - she had not even looked up as we approached and I had to ask her and interrupt her paperwork. After I got my mother settled in, I went back to the nursing station for her wing to let them know she needed to take her meds, as we we a little later getting back than expected and she had missed them earlier. I stood there more than 10 minutes ( I watched the clock). As I watched the clock, and her - I noticed she was flying through filling out the papers - the exact same papers every time - which was curious to me. Finally another nurse walked up to the station and I said - "I know I look like I have nothing better to do but stand here waiting on her to see what I need..." The nurse didn't even look up.

I asked a friend who has worked in a nursing home what he thought the papers were - he said it sounds like the vitals forms. My mother has been in this place for 6 weeks - the first 5 on the rehab side, the past on the long term - I visit her at least every other day and my niece and sister make the other days - not one of us has seen hers (or her Alzheimer's) room mates vitals taken. Mother said they were taken the day she was moved to this hall.

The meds she was supposed to receive at 9 pm last night were finally given at 12:45 a.m. (this includes her sleeping pill and blood thinners) which threw the morning meds off this morning, again, including pain meds and blood thinners. She is also on a fentynal patch that is to be changed every three days and it has not been changed.

They have forgotten to bring her lunch twice.

Her roommate, having Alzheimer, needs help with everything. They wake her at 5:30 a.m., get her dressed and in her chair for the day. She falls back asleep. They bring breakfast at 8:30, set it at the tray in front of her in her chair,, she sleeps. They pick up her tray - she never eats any breakfast. Which worries both me and my mother.

We live in Florida, and right now OUR a/c is out on out top floor - it is 87 degrees upstairs. HER a/c is not working either. She has called maintenance about it twice today. If they do not fix it today (it is 5 pm now on a Saturday) she called me 10 minutes ago and they still had not been in - it won't be fixed till at least tomorrow - but probably until Monday.

The financial department has been helping me get her approved for long term medicaid and they have faxed every paper needed until the very last one medicaid has needed. First thing about this I do not like - it is a financial release form and they insisted I leave the dates blank. and now they have told me they have faxed it three times and two of these times she has lost it. Last Thursday she had to have a new one signed and medicaid still does not have it.

The nursing home also told me that the money that my mother gave us for rent/help with the bills she gave us the last month she lived with us HAD to be put back. We had no choice and when we did it could only be spent on my mother and we had to keep all receipts. Even though this is the same amount that she has been giving us for the past 10 yrs she has been living with us. I called medicaid 4 different times on 3 diff. days and they all said the same thing - they had never heard of this. I told the finance person about this. Her story changed some and that I was talking to the wrong people at medicaid. She also said that once she was approved for the medicaid, mother could do whatever she wanted with her money. Give it to anyone..throw it out a window. Whatever she wanted, it didn't matter. Really? Because the other day you were ADAMANT that she could not do ANYTHING or GIVE ANYONE ANY money except spend it on things for yourself.

Anyone ever heard of these things?

I know I should definitely mention the Vitals chart (I am going to make sure that is what the blue sheet is in the morning when I go in...I am for certain going to look at my mothers chart to see her vitals list)..

Oh. There is also a lady who is paralyzed and can not communicate - they put her in a wheelchair and leave her in the hallway. I have never even seen anyone talk to her. EVER.

What should I do? I will for sure look for another place, as I am afraid once I say something, there may be retaliation against my mother, but I need to wait until all of her medicaid stuff is final - that is one thing I can not go through again.

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Dixie,
There is a Florida long term care Ombudsman office (over ALF care, not sure about nursing homes) But does your mom need a NH? We have people at our Home ALF with lots of individual attention, and taking meds like you describe, in fact, one takes 17 different things, it's a nightmare, but she's in Assisted Living not in a NH for skilled nursing care.
There are small places, in a House, which is comfortable and feels safer for an elderly person.... If you go to AHCA.MyFlorida.com, there you see a place to "find a facility" and if you click, you get to search by Type (Assisted Living, NH, etc) and then by proximity to your address, etc.
New plan for long term Medicaid is different but there is a Waiting list for ALF version. The nursing homes have ways around that, but they also Get Paid like $700 a DAY, versus our rates are more like $100 a day at a home ALF. The big ones charge more usually, but people sometimes think that's ok... Amazes me that they get No attention in the big places but because they look like a hotel, it's worth a lot more than Knowing the caregivers and actually Getting Care and being treated like family, with individual focus, someone who Knows how you like your coffee and your eggs, and always brings your favorite flavor of Ensure or makes you Popsicles with it.... We also have live music a half dozen times a a lot of organic and more healthy foods, so we are exceptional even for a home ALF. We are in Pembroke Pines, south FL near Fort Laud.
But the whole state of FL is listed at that AHCA site, so you can look for other places. I hope this helps, and yes, big places the law says they can have 10 to 20 people for each caregiver, because they have separate kitchen & cleaning staff and we do everything, multi-tasking at the home ALF level... We're required to have 2 people on duty during the active day, for 5 Residents or more. We can have 1 only if we have 3, which is half empty and can't survive that way of course.
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meds nearly four hours late and a patient who needs feeding assistance not getting any, ever? uh-uh, that's NOT good care. There should be an ombudsman name and/or contact information posted, the office of long-term care can be called, and even APS can be called, but start with at least trying to use the official grievance procedure.
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Mmm. I can see what you mean about her speedy-speedy paperwork. "Here are some I did earlier" eh?

And it is incredibly frustrating to be treated with such rudeness, never mind anything else. However busy you are with your paperwork, how many seconds does it take to excuse yourself to someone who is clearly waiting for attention?

Even so, I think I would have tried (quite possibly unsuccessfully, it's true) to avoid sarcasm. It's so satisfying, but it never does get you anywhere alas.

It sounds as if, after the frightening fall, you perhaps moved her into this NH automatically because it's attached to where she had her rehab, would that be fair to say? I appreciate how difficult it is to be a really picky buyer: we think we'll visit lots of places, carefully select the ideal environment and staff, and proceed in an orderly fashion… But in fact your chances of finding a great facility near enough to visit that has a place just when you want it, all of those things together, are vanishingly small.

You say your mother is doing much better - is her health basically stable for the time being? If so, and bearing in mind that she's only been in the long-term section for one week and you need to allow for teething troubles, I wouldn't panic and rush her out of there unless there's a serious incident. The delay in meds after she'd been out for the day, I imagine she'd probably missed the evening drugs round, don't you think? The mass form-filling is obviously unacceptable, but if your mother's stable then her not having her vitals checked is not in itself immediately dangerous, because there won't be anything to observe (God willing). I realise this is not good enough to be relied on, but for now it isn't something that threatens her safety. And I wouldn't totally take her word for the missed meals thing - my mother quite often asks "are we having supper today?" two hours after a full roast chicken dinner with dessert. It just slips their minds, sometimes.

The emphasis on finances first, the sloppy nursing practices (possibly - it could be the observations were made but not recorded because they'd run out of forms, or something farcical like that), the rudeness in approach, the flurry of disturbing anecdotes… yeah, I'd be looking elsewhere too. All I mean is, take your time about the next choice or you could be entering Groundhog Day.

But meanwhile, don't pick fights but do ask pertinent questions of the right people about routines and staffing levels. A reasonable question, courteously phrased, should get you a sensible answer. If it doesn't, it goes on the record for your Parthian shot when you move her.
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One thing that has changed for me in the past year and a half, having my mother with me is that what I used to think was neglect actually is not.

There is no question that neglect exists within the nursing home setting, and I'm preparing to send mom in, so will be watching, but I also know now that especially with dementia things are different, things do not appear normal.

My mom may say to me...OMG that person over their is abusing their child...why...because the toddler is tired and crying while mom is shopping for groceries and trying to hurry. She isn't saying bad things to the child, but as a mom instinctively I know that cry...and there is no reasoning with a tired toddler.

My mom on the other hand has no instinct for this (never did actually) but in her dementia mind this child is being mistreated.

She also thinks the dog bites her all of the time...LOL...and he does not...but if the dog nose buts her she honestly believes he has bitten her.

She does not always remember seeing us eat, or having eaten lunch herself...so these types of complaints, if you didn't know any better would appear to be signs of abuse...or neglect.

The point I'm trying to make is, it's important to understand the situations and find out more...I wonder at the idea that the room mate is given breakfast but not assisted to eat...that doesn't make sense...but again...what is the situation...and do the staff supplement her later on.

Also...by keeping tabs and by making sure that all the staff do know your around and you appreciate them.

People with dementia's are often quite abusive to their caregivers and it's hard work...imagine cleaning up after folks that can not use the toilet or being bitten or hit because your trying to help with a shower...every day these people that work in elder care have to deal with this on a mass basis...be kind to them and show appreciation all the time and ask them what is going on...I think it will make a difference not just for your mom but everybody else that person cares.

Saying that...if it is a really bad situation you really should look for other choices.
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I have a patient in the nicest NH in town. This place is amazing, the nicest NH I've ever been in including the one my dad was in. They only take a blood pressure on residents who take blood pressure meds. And "vitals" are temperature, pulse, oxygen, and blood pressure. Most NH's don't have enough available staff to take vitals on everyone and not everyone needs their vitals taken everyday.
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On the financial question, her entire SS check goes to the nursing home, all of it. Medicaid will only make up the difference between what she gets and the cost of the NH. And Medicaid will look back 5 years, all the way through 2009 and all her money had to go to her care. So if there are 4 of you, she should not have paid more than 25% of the household expenses.
You can always ask to see her med charts and vitals charts. Make a point of getting to know the head nurse and be her/his friend. I will warn you, my MIL complains of missed meds and missed meals and aides that don't help, but we found out the problem was her memory. We occasionally have lunch with mom, this way we check the meal quality. We compliment the kitchen staff. We always thank the aides that come to the room, even when mom refuses help with showering or dressing. We do not comment on the other residents, because some are very confused, others are angry 24/7 no matter what. We do say good morning to them, offer help if they are lost in a hall. A simple smile and thank you when things go right will go a long way with caregiving staff. If they see you as appreciative, they will go out of their way to help.
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When I had to file for Medicaid for my mother; I did all the paperwork myself to ensure that everything was done properly and on time. It's too bad you could not just take over and do the rest, but they are already in the process. I even went so far as to personally deliver everything to the local Medicaid office and had them stamp it received. The rules with Medicaid are quite strict and straight forward. After all procedures have been followed; the patient can keep a portion of their social security. I had to pay a percentage of it to the NH, and pay the supplemental health insurance and prescription coverage. My mother had an amount of about $72.00 per month to get her hair done, etc. She could spend that amount on whatever she wanted - maybe that is what they meant. Every other penny goes to pay the nursing home as the expenses are tremendous. Most nursing homes accept Medicaid is what I discovered. I would talk to the social worker there for advice if possible.

They should be checking vitals, etc. and recording and you should have access to this info if you have POA and Health Care Proxy. I would talk to the nurse supervisor about the medication delays - those are important. If you have other concerns you can contact the Nursing Home Ombudsman. These people oversee nursing homes in the area to check on them for violations. There should be a posting of this information in the main lobby of the NH.

It's good you are looking at other nursing homes. If possible, I would recommend any that might have a concierge. These people are hired to ensure that the patients have everything they need. They are not medically trained; but can certainly contact a nurse, etc. if needed. These people were wonderful to my mother - for conversation, bringing an evening snack and many other day to day needs.

My mother was in one of the best NH in the area. I'm hoping you can find one as well for your mother. There might be waiting lists for the good ones; but often openings occur out of the blue. Good luck. This is difficult, I know.
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Play it cool with the nursing home until Medicaid qualification takes place, IF you really don't want to go through with it with another facility, but in the meantime look for another place. And DOCUMENT everything so you can file a complaint later.

You might try researching online to see if there are any ombuds/agencies who monitor bad places. I'm not sure if AAA lists them but I'd start there.

Good luck. We went through a similar unsettling situation with my mother but were able to meet with the staff and agree to a solution, and with the exception of the selected physician, things went much better.

With my father, I had to move him and just get him out ASAP, but Medicaid qualification wasn't an issue.

It does sound though as if there is some medical risk to your mother so you might want to rethink waiting until you get Medicaid qualification. I've never been through this aspect so I wouldn't suggest you pick up where they left off and just get your mother to a safer place, but it would be something I'd definitely consider. The Medicaid experience might be less traumatic with a more competently managed facility.
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I wish she were still able to be in her own home. She has lived with us for the most part of 12 years and the situation had been causing a rift with my husband and I for years, though he has been a very patient man. She has lost most of her eyesight and has the beginnings of dementia. I try to look at the damage she has done to the house as just stuff, but she had been in and out of the hospital 4 times in 6 months with pneumonia because she wouldn't et out of the bed and then she started falling. We have a 2 story house and while during the day she would not get out of bed, she had insomnia (probably because she slept most of the day..from not sleeping at night..vicious cycle..) so she wandered a lot at night and I could not risk her falling at night when no one was up. When she fell while I was out of town and my husband and son had gone to get some dinner (to bring home) and they found her fallen upstairs - it was the final straw. It was a very hard decision, but health wise, she is doing much better. But these things concern me, as she, at some point, will begin to decline as everyone will at some point.
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my reply might be a bit simplistic but if the govt paid family a similar amount as these shoddy care homes recieve , there would be a more elders being cared for at home. elder care is a big growth industry , like private prisons but i think we need alternatives for both.
maybe its getting better. my aunt left physical rehab with medicare provided home care right on her heels . between home care and family she is carefully cared for in her own appartment. home care holds family to a high standard and you can believe family is watching home care closely.. everybody wins..
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