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I recently posted that my mom was improving with her PT/OT after a bad fall but since has had no appetite. Now after 6 weeks, she remains on Boost shakes and a few soft foods, but is eating less than 25% of her meals. The dietician/nutritionist has tried all her favorite foods, and she has been on an appetite stimulant, but to no avail. Mom's reply is that she is not hungry and gets nauseous if she eats a regular diet. She said she will not agree to a feeding tube, and as POA, I am not sure what to do if anything as Mom is of sound mind and is very opinionated and stubborn. Her social worker and the nurse manager were also trying to feed her with little results. As a result, mom has lost 20 lbs. in that time. When I relayed all this info to my out of state brother, he called her to ask what was going on since she always had a great appetite and was even overweight after eating 3 big meals daily. Mom replied that I was making up stuff and not giving him the right info. She has also lied to him in the past about what I do or don't do for her, the quality of the SNF, and the inadequate care that she receives. I have been forwarding the pertinent e-mails from the staff to my brother as I follow up almost daily on her progress. Her intention has always been to move in with my husband and I and our fur babies, but for many reasons, this is not a viable option. Thanks for your constructive suggestions.

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If she does not want "heroic" measures, such as a feeding tube, you should respect her wishes. When my mother was in memory care, she went through phases, first she put on a lot of weight, then she lost weight. She lived a couple of years weighing ony 90 lbs. Have them keep feeding her soft foods that don't make her nauseous and Boost and ask them to give her small healthy snacks in between meals, like smoothies, ice cream, pudding, etc. if she will have them. Maybe she can only handle small amounts of food at one sitting. Have you talked to her doctor about this? Is she still having PT and OT so that she can gain strength to get out of bed? Since she is of sound mind, ask if she wants to go through testing with a gastroenterologist to find out if there are medical issues with her digestion. She may not want to go through a round of testing. How is her health, other than the weight loss? Has she fully recovered from her fall? Skilled nursing is the highest level of care. Would she be able to move to a rehab or assisted living facility if she regains her ability to do certain daily things, such as go to the toilet herself, shower, feed herself, etc.? Maybe having that as a goal will make her want to strengthen herself so that she can move to a lower level of care.
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My MIL, passive-aggressive to get her way, was found on her L/R floor hallucinating. She had a bad UTI and after hospitalization, she went to Rehab. Was told she was being transferred 8 hrs away to finish her Rehab (so she'd be near the POA) and then it would be decided if she could return home or live with one of the boys. She wouldn't participate in PT and eating very little and acting like am invalid. Her roommate said one morning she was a chipper and ate her whole breakfast. I think she thought by acting the way she did her sons would get her out and back to her house. Well, I think she went too far and there was no coming back. She was 91 and after 1 month, she was gone.
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Yes my late mom had one, it did suck. I foolishly listened to the hospital and their
"The doctors and nurses are concerned about her being weak.." so a dumb decision to have it.

The one she had was not portable, in fact it was similar to the one that hospitals would use to hook up an iv bag for intravenous fluid, (the one with the bag hanging on the tube(?) that can be moved if the patient gets out of bed and wants to walk around). It was big and bulky. There was hardly no way she would have been able to walk around with it on her own. Also, in a NH setting, it's up to the nurse to keep it and the area where it is inserted clean, and to fill it. (Tasks that may have to wait until other people are fed).

I found out later, after she passed, the hospital made some money and the GI doctor definitely made money (he even came around after it had been disconnected and his services were no longer needed. He could charge insurance for these visits, which he did, all the way up to her death).

If mom does get one there is a good chance she will have it for the rest of her life.
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A feeding tube is a rather drastic way to force feed. She may also have rights to refuse, or she may try to pull out the tube. My mom and my aunt experienced your issue as a precurser that their bodies are shutting down. As far as my aunt, she was alert to the end. She knew that it was important to eat but could not eat much. She also expressed that she probably would not be around in a year. She also was experiencing symptoms of heart failure which was the cause of her death.
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let her be especially if she is of sound mind.
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MissGypsy Sep 2022
She is 85 with many chronic health conditions but her mind is sharp. She knows exactly what she wants and does not want. I am trying to let go of a situation beyond my control. Thanks!
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MissGypsy: Perhaps she requires a swallow study posthaste. I wonder, as others here have, if her ideology of moving into your, your DH's and fur babies home is a part of the grand scheme to refuse food stuffs. Also, perhaps she needs to see her physician.
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MissGypsy Sep 2022
Thanks for your response. Mom is finally realizing that she needs to cooperate with the staff and is responding better to PT/OT and different foods.
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My mother, my husband and I all filled out health directives to prevent tube feeding: we want to be in charge of our own bodies. Just like you want to be in charge of yourself, so does mom....................let go.
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My mother was in SNF dor two years one day she just stopped eating. She was 89 and had a stroke two prior years. She was offered food daily and always refused. It was hard for me to observe, but she passed. I am not in favor of tubes unless it is to get over a hump. I would not want one just to prolong living. No way to live.
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A swallowing study, if your mother was willing to cooperate, would give information about the mechanics of swallowing. If that is the problem.
Loss of appetite/interest in food/reports of GI upset after eating are symptoms of many things.
Medications can be the culprit - can you discuss the idea of temporarily stopping some medications that are not life sustaining (vitamins, statins, blood sugar management, etc.) for a. month to see if that improves her appetite/interest in food? Is her BP and heart rate running really low? Maybe cut back on cardiac meds? Conversation for you with the NP or PA or MD who sees her in the SNF.

A bad fall, and the realization that she will be staying in the SNF, is often 'the beginning of the end' and she knows this is true. Letting go of the world and turning inward is a normal sign that a person's time is coming to an end. Not that she will die right away, or that you have to do something or it will be your fault that she dies.
I'm the POA for my mom, recently had to force a psychiatric placement for her own safety - something she NEVER wanted, actively avoided, and now blames on ME. I didn't do it, ,though, until all 3 of my siblings indicated that they believed that she did need this type of care, and that they had no objection to my taking the actions.
Maybe you can see what she thinks about her situation, what she wants for the future, etc.
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MissGypsy Sep 2022
Thanks for the input. Many conversations are taking place and I believe Mom realizes that she is not getting her own way. Is cooperating better now with PT/OT and trying different foods.
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My dad has lost near 40 percent of his body weight in the past year. He has stage 3 ckf—no dialysis required. He’s at home, no dementia, no swallow study, but he’s just lost his appetite.

He just turned 90. My sisters say there’s nothing to do about the situation medically, and given that one of them is a surgeon, I’m going to believe her.

Sometimes it’s not senior brat behavior. Sometimes they just start eating less.
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Get her a psych evaluation and a swallow study done. Once it's determined she's able to eat but choosing not to, you'll know what you're dealing with..... a hunger strike in an effort to get her way. A feeding tube should not even be a discussion. If your mother has lost 20 lbs from eating less, I'd venture to guess she had 20 lbs TO lose and is not emaciated as a result. And can probably lose even more weight without issue.

Once she realizes a hunger strike will STILL not get her moved into your house, she may suddenly find her appetite once again, at least for her favorite foods or when nobody's looking. You'll know shes eating on the sly if she stops losing weight or starts regaining. This PROVIDING the psych evaluation and swallow tests show no issues.

The human will to get what we want is amazingly strong, so don't be shocked if thats what's going on here. Nobody can prove she's not really nauseous, and she does have control over what she eats, so this can easily be your mother's manipulation tactics which so far are working quite well! She's even successfully playing your brother against you, making you out to be The Bad Guy when you've done absolutely nothing wrong, making your brother question you. This proves she's got an ulterior motive here, let's face it. Cause as much chaos as possible and see what happens! 😑

Make sure you run those tests so you'll know for sure there's nothing medical going on preventing the woman from eating. Or depression that a simple anti depressant would cure. Process of elimination will give you your answer.

Best of luck to you.
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MissGypsy Sep 2022
Appreciate your assessment and kind words. Recently visited and she was out of bed and walking with PT assistance. We then took her outside in a wheelchair for fresh air and sunshine. Mom replied that she felt better getting dressed and out of bed, so it seems she is moving forward and eating a little better too
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I am so sorry you are going through this. I hope and pray for you.
By feeding tube, do you mean the kind where it goes in through the nose and down into the stomach? Or the other kind where they make an incision and place the tube directly into the stomach?
Your mother may not even be able to tolerate the naso-gastric type. My mother could not and kept pulling it out. It was an awful experience for her and me too. And my mother (years earlier) had chosen the incision into the stomach type for her mother and therefore my grandmother lingered on for another 2 years of just lying there. That was also awful.
So after my Mom pulled hers out for the 2nd time I said no more and she was put into hospice where her last weeks were peaceful.
I hope this helps.
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I hope Mom has a Health directive saying she wants no feeding tube. Now that you know she doesn't you should not override her decision.
As a POA your decisions need to be made on what Mom wants or you think she may have wanted. You are her representative.

I may have a doctor look at her with the idea its a case of the "Failure to thrive". You don't say how old Mom is. My daughter is a Nurse and says no feeding tubes unless a means to get over a hump. She sees too many residents where its used to keep someone alive with no quality of life. Once placed, a court order or hospice is the only way to get it removed. Before, its letting nature take uts course, after placing, it's considered starving a person to death.
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MissGypsy Sep 2022
Mom is 85 with many chronic health issues. I am honoring her wishes for "no feeding tube" and she is eating a little better. In general, she has a very good quality of life in SNF and is getting a lot of care and attention. Thanks!
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MissGypsy, there could be reasons other than not wanting to eat, such as the meals just not being appealing, or as BarbB suggests, a swallowing disorder is involved. Or perhaps she can't chew.

I would ask and/or insist on a swallow study, performed not by a nurse or anyone on staff unless it's a speech pathologist. That will determine whether or not swallowing is an issue.

What about favorite foods before she was in care? That's usually an unofficial good indication whether she's not hungry or not able to eat.

Recently, when I fell and injured myself and could barely walk, I also couldn't eat for 4 days. I wasn't hungry and everything I normally liked seemed repulsive.
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MissGypsy Sep 2022
She had a very healthy appetite and was eating 3 meals daily plus snacks and put on 25 lbs. Since the broken arm, she has lost her appetite but is eating a little better now. Thanks!
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Has she had a swallow study?

Has she been to the dentist recently?

Is her depression being treated?

Long ago, my FIL was in the hospital for kidney related issues. He stopped earing. When asked, told everyone "I can't eat".

Every one brought his favorite stuff. Tongue sandwiches started to pile up in the hospital fridge.

Finally, a psychiatric consult was suggested. Psych noticed that his COGNITION was off. Ordered some imaging and a Speech/language consult.

The answers?

He'd had a stroke, was saying "eat in place of swallow. He couldn't swallow.
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MissGypsy Sep 2022
She is swallowing fine based on many different and favorite foods and liquids. Just the appetite is mostly gone. Depression and anxiety not being treated as she refuses any assessment as well as any further drugs.
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Usually LOs are familiar enough, ESPECIALLY if they are lucid in their illness, to KNOW what they have signed when they say “no feeding tubes”.

Don’t question her choice or your own. You’ve made a comprehensive and reasonable assessment, based on your love for her and her own choices.

There won’t necessarily be any “happy ending”, but you’ve both done the best you could come up with. Your brother’s loving input has probably been his best too.

Continue to offer nourishment as you’ve done, for your peace of mind and with the potential that she may respond, but be at peace with what plays out.
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MissGypsy Sep 2022
Your response is appreciated. She is eating smaller meals and snacks/Boost in between.
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My parents did not want feeding tubes, and that was stated in their Advance Directives. When the choice came for my mother to get a feeding tube, my mother said no. Now my father was not competent mentally at that point.

But if your mother IS, then doesn't that make the choice that much easier to simply follow her wishes?
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sp19690 Sep 2022
If they had advanced directives about no feeding tubes then why were they even asked if they wanted the feeding tube? What's the point of having an advanced directive then?
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Since you know your mother does not want a feeding tube, in my opinion you should absolutely not consider it. I cannot speak to why she is not eating but you should respect her wishes nonetheless.
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MissGypsy Sep 2022
I am not in favor of the feeding tube as long as she can make coherent decisions...Thx.
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Bring her a favorite fast food treat and see if she eats it.

If mom is of sound mind i dont see how or why you would force a feeding tube on her.

Based on other posts you made about moms personality disorders it could be she is on a modified intentional hunger strike to get her way with letting her live with you.

Or maybe she just likes all the attention she gets with all these people trying to get her to eat.

Or maybe food is making her nauseous and she cant eat as much. If thats the case maybe it's caused by a medication she is on or an underlying health issue that hasn't been caught yet.
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MissGypsy Sep 2022
Thanks for your input...all good ideas!
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