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My grandfather is in a rehab facility and is supposed to get discharged Tuesday. He is in control of all his medical decisions, and is in need of his liquids being thickened due to a stroke. He doesn't like his liquids thickened, and doesn't want them to be once he is at home. His wife want to honor his wishes after being told he has 6 months left to live if that. The facility told his wife his liquids needed to be thickened still at home, and she told them she wouldn't do that because that is not what he wants, and wont drink anything thickened. They are now threatening to delay his discharge and call APS on her if she does not thicken his liquids, but HE is in charge of his own medical decisions and is well aware of the dangers of not thickening his liquids. I want to know if the nursing home has any legal standing to call APS on them. The social worker called my mom threatening to call APS out of "moral duty" but last time I checked if the patient doesn't want something and is legal making decisions, then the patient doesn't have to comply with their recommendations.

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One other thing, even in my parents' extremely difficult situation, APS only sent a social worker by their home to talk to them and provide them with lists of home care workers and the like. They had no power to compel my parents to do a thing. But it was certainly a comfort to me at the time that they were stopping by to see them on occasion.
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I don't have any experience with thickened liquids (except for smoothies - and I agree he might find them more palatable than artificially thickened liquids). But I do have experience with APS, because someone in the community called them on my dad a couple of years ago, when it became clear in a very public way that he was incapable of handling his own finances and hygiene. It is not necessary for the elder to be in a situation of abuse in order for APS to start a case, but APS can handle situations of "self neglect" which was definitely the case for both my parents at the time. Just as a comment above said, APS can't dictate what your parents can and can't do. But they may actually be on your side in the situation of having the NH bullying your parents, especially with the obvious fabrication of his "pneumonia". Document everything. If they attempt further to keep him there, you might even want to call APS yourself and report the bullying. Does your state have a nursing home ombudsperson? A lawyer could be very expensive for you, but reporting their actions to the ombudsperson could be enough to discourage them from attempting this with any other patients. Just some random thoughts, and I hope it was helpful. Best of luck to you and your husband.
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I hope you've been able to resolve this issue satisfactorily by now. We had numerous professionals pressuring my mom to take only thickened liquids following two strokes, which left her with left sided weakness (no paralysis) and swallowing difficulties. She tried the thickened liquids a few times and became absolutely adamant in her refusal to drink them. She was competent to make her own decisions at the time, so I felt I had to support her in standing up for her own rights, whether I agreed or disagreed personally. She had me write a disclaimer of sorts on the back of her Resident Rights the nursing home gave her, which said she chose to drink regular liquids, and was fully aware of the risks. Whenever anyone gave her any grief about the matter, she just showed them her little paper! I did, however, try my utmost to make sure that she could drink as safely as possible, so bought several toddler straw cups and worked extensively with her on taking little sips of water through the straw. All the speech therapists who ever saw her were opposed to her using a straw, yet every one of them ultimately had to admit that she did much better with a straw than without. She could not control a cup, so would tip it too much, resulting in a gush of water that she couldn't swallow quickly enough, so it choked her. The straw cup really was the solution. We still had problems, don't get me wrong.......the nursing home wouldn't keep the straws cleaned (they got GROSS at times, even though I bought special little brushes to clean them with), or they would "forget" and give her a tumbler, or a pitcher with a straw in it (WAY too heavy for her to even pick up), or they would lose the straws.......always something! But she didn't drink thickened liquids, and wasn't any the worse for it, far as I could ever tell. She drank a lot of water and stayed pretty well hydrated as long as it was available to her. Dehydration is a very common problem with the elderly, especially in nursing homes, and especially with the medical problems she had. I found information on the internet that said it can actually be MORE dangerous for people to aspirate thickened liquids than if they aspirate just plain old water. Here's a recent study you may want to read, and perhaps it would give you a leg to stand on when defending your grandfather's right to make his own decisions about drinking liquids: http://esciencecentral.org/journals/reexamining-the-use-of-thickened-liquids-among-patients-with-dysphagia-JCDSHA-2-e112.php?aid=28121
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Yes, txcamper, they primarily speak English. My grandfather is a veteran and he and my grandma are being bullied and lied to by people who are supposed to be taking care of them. They have done nothing wrong but be honest about their/his wishes. He is in declining health and only has 6 months left or so to live, and this nursing home is trying to railroad him, physicians aid stands who we are supposed to trust are lying to us and giving him a diagnosis that isn't even true and there was no tears done to even see if it could be true..I think we should contact a lawyer for malpractice at least.. So sad when the elderly are treated this way.
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I can see them feeling responsible and worrying about non-thickened liquids, and making the report because they feel they must, but APS will not likely override the wishes of a competent person. Please consider a Frazier protocol though - excellent oral hygeine and plain water between meals for hydration. See speech-language-pathology-audiology.advanceweb/Article/Frazier-Water-Protocol-1.aspx for a good basic explanation.
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I'm a rebel at heart. This is what I would do. I would tell the NH that I was doing just exactly what they said to do. Then when I got home, I would do just exactly what I and the patient wanted to do. I've actually done that myself with no harm done.
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I am just curious, and forgive me if I'm off base here, but is English the primary language of your grandparents? I'm just wondering if there could be an attempt to bully them due to a misunderstanding of some sort.
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That is what I told them to say, as long as they completely understand the consequences of thin liquids just say they will comply and do what they want when they leave. Before that could even be said the physicians assistant tried to lie to my family to keep him there.
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So my mom just left the facility, and the PA (physicians assistant) told my mom and my grandma that my grandfather that he has pneumonia and he would have to stay a day or two more. When my mom questioned when they discovered this, she said they did an X-ray yesterday. When she brought a copy of the report the time stamp was from when my grandma was there and he was never taken to any tests.... When my grandma said that the PA took the paper out of my moms hands and told them she'd me right back. When she returned she told my mom and grandparents that he was fine to go home tomorrow as planned...so five minutes ago he had pneumonia and had to stay and now he is fine?! I told my mom this is malpractice, they told them a diagnosis that was not true and a copy of a test that was not given. They are also withholding his nerve med because it's an inconvenient time to be given, so unless he calls and asks for it they just don't give it to him! I think a lawyer should be called, what do you all think?
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By the way, there is no 100% effective way to prevent aspirational pneumonia. Diet and thickening liquids may reduce the risk. But it is possible to aspirate one's own saliva, and that is very full of germs.
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We diligently tried thickened liquids for my husband. We went through one of those giant cans from the drug store. (Do you know that thickener in beer makes a big foamy mess?) And then we stopped that and the special diet. Coy didn't want to do it anymore. He was quite depressed over it. I supported his decision. The man was dying. He ought to be able to decide which risks he was willing to take.

I told the speech therapist flat out we would not be following the diet. His doctors knew and supported his decision. I would gladly have taken on the APS if they thought they had any business coming in. No one even mentioned that.

An adult who has not been found incompetent by the state may make is own medical decisions. A person can decide not to have chemo even if 50 people assure him it would be the best thing. A person can reject advice about exercising and sleeping and medications. And a person can eat and drink as he sees fit.

I don't know the circumstances your grandparents are facing, Finn33, so I don't feel qualified to urge them to follow the official medical advice. Maybe that would be best, or maybe not. I would make sure that Grandpa clearly knows the risks, and let him make up his own mind.

(My husband said he would rather choke to death than to continue with the diet. I believed him. He became increasingly depressed on it.)
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Ditto the above. Just tell the rehab what they want to hear and then go home and do what you want. Why is that even an issue? I personally would want to do anything necessary to make my or my loved one's life a little more comfortable and aspiration pneumonia and choking isn't comfortable. Just my opinion.
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I'd suggest the same thing; tell them the plan will be accepted; do what they want at home, but they are taking a chance if he needs thickened liquids and doesn't have them. I assume that "frank" aspiration is an issue, so he would be wise to heed their advice.

Apparently he has some dysphagia so he might need a more specialized diet. If he doesn't follow some advice on this issue, he may find himself back in the hospital. But it sounds as if he and his wife are going to do what he wants.

They should at least try various thickened liquids; they're not all the same. It might even be that his wife could make something like the popular smoothies and those would be more palatable than nursing home thickened liquids.

I think the facility is concerned for their liability even though they've advised him strongly enough what precautions to take. And it may just be that they're especially concerned and don't want him to develop additional problems, which he just might if he can't swallow thin liquids.

As to "legal standing", I think anyone who feels he/she has information on abuse COULD have legal standing; the question would be whether the information and the evaluation support and bear out the accusations. I'm not really sure "legal standing" is necessary to report someone to APS; however, the threatened abuse hasn't yet occurred.
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Why would they not have just promised to thicken his liquids and then do as they want once at home? I don't think they can compel them to do anything, thicken liquids, take medications, do exercises etc. As long as they are both competent they can make all the bad decisions they want to.
By the way, they might both change their minds after he chokes a few times.
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