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30 plus days in long term facility. Dementia, obese, invalid. She is 84. Food consumption is an issue. She is rejecting all the food offered. B-L & D. She complains about the smell of the food and that she cannot swallow. Staff is now providing pureed meals still with no success. I know that institutional food is quite a change from what she is used to eating (I was doing the cooking at home). She could wolf down a pizza with the best of them. Just finished reading similar posting and in fact, had a conversation with someone regarding possible hospice care. Not sure where this is going to end. Keep your comments coming. Also, thanks to all who take the time to share their life experience here.

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Am I right to assume she isn’t drinking anything? If she is drinking, try boost. Can’t she at least be hydrated through infusion which could improve the feeling in her mouth so she can tolerate something like a shake or boost?
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Going through the same thing with my mother. No dementia. 78 years old, fairly healthy. Was working, driving, living a great life. Had a fall and developed a fracture in her spine, which is not the major problem. She said she developed mouth pain when in rehab and was treated several times for thrush. Doctors say her mouth is clear of any problems except extreme dry mouth which has come from dehydration and malnutrition. She basically stopped eating at rehab and has lost down to 90 pounds. Has never been over 130. She’s at the point where she can barely stand and is falling. We are considering a feeding tube. I really don’t want one. Her skin is already breaking down and tearing and she doesn’t heal well. But, without the tube she will literally starve to death. I can’t understand why she just won’t try to eat. So frustrating.
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Windingquilter Mar 16, 2024
My husband had what is somewhat classified as a stroke. He had to regain the ability to swallow. After careful thought by him and the family, we had a feeding tube put in. It saved his life. As he felt better, he gradually was able to start puréed food. Then he had mechanical food. I want you to know that he complained about the full somewhat painful feeling that the food tube gave him. This feeling was also experienced by my brother-in-law. He started to refuse the tube feeding. The procedure to install the tube went well and the feeling after was okay.
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Did anyone else witness hospital negligence or mistreatment of your LOs? I feel like I have PTSD.
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Hospice worker told me, if she doesn’t ask for food or water, don’t give it to her..
it’s the beginning of the end.. you don’t want to prolong it..
that was tough for me to hear… but reality straight up..
maybe don’t fight her.. give her her favorite treats.. at this point.. let her tell you what she wants, if anything.. if not, that’s your other answer…
support her and remind her she is loved… and get the caregivers in who can help with this transition… its so sad… maybe, just maybe, she’ll pull out of this if everyone just stops fussing about feeding her…let her guide you… to a point.. hospice etc should come in to evaluate ..
its hard.. I’m sorry…
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Riverdale Jan 25, 2024
My mother had been an avid eater for years,a bit too much so for her own good so when she started refusing most foods it seemed surprising yet a choice her body was telling her to make. She enjoyed a fruity Starbucks drink I would bring her almost to the end. I believe most people will tell you this is a transition that a person makes. They know what they can handle digestive wise and what they have the energy to consume. My mother would still drink water but on her last night her water was left untouched.

As difficult as it may be to witness it truly is best to allow them to make this their choice. I believe they know what they are capable of. I wish you peace during this period.
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EngineerTom: Perhaps you can bring her some of her favorite foods.
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If she is rejecting food, talk to her doctor. People do not reject food long-term from a taste or smell issue. Her lack of hunger is concerning. If she is end stage dementia, then hospice care may be worth consideration.
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Talk to the staff (is there a nutritionist or case manager on staff?) and see if you can observe her swallowing problems for yourself. Bring her food that she likes and see if she's able to eat it. Tell the staff what kind of food your mother likes (and they should have checked if she has food allergies with you). My mother used to "pocket" her food (stuff it in her cheeks and not swallow it) when her dementia got worse. At that point they switched her to "soft" foods that don't require chewing. Ask the staff if she will get Ensure (or other similar products) to supplement her diet if your mother won't eat the meals. You can also ask them if she is losing weight. She may be weighed every week or month. Perhaps they can let you know her weight when she is weighed. If she's obese, it may be good for her to lose some weight, as long as she is getting enough nutrition to stay alive. All the best to you both!
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Tom, I believe I read that her swallowing test is negative. We are battling with my Mom's assisted living. We want her on regular liquids, she doesn't want thickened liquids. She drinks from a cup with top on and a straw. This helps her limit the amount of liquid at a time. She drinks fine. The assisted living acts like we're endangering her life!! They just don't want to take a chance...very frustrating.
From time to time, I bring food from home or from a restaurant that she likes.
Best wishes
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AlvaDeer Jan 24, 2024
If she is choking on thin liquids at all you ARE endangering her lives. Aspiration pneumonia is common and pneumonia was once know as the "old person's friend" as it took them to their eternal rest. While you in your home setting may be present and able to do all sort of tricks that help with swallow, once there is some deficit a facility will get a doctor's order for thickened liquids and this won't vary just as it won't vary in hospital setting.
Once you are looking at the severity of an impaired swallow reflex you are looking at being close to the end.
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I haven't read all the posts.

If you were to bring in some of your cooking, will she eat it?

Smell and hunger are related. If the food doesn't smell acceptable, the tongue won't like it. Pureed foods have nearly no flavor, especially to someone who has their tastebuds.

My Mom wasn't super keen on the food at the MC. However, I used to augment her diet by the fruit/food that I brought in. She would chow down on my stuff and barely eat the food at MC. It could have been due to the fact that they gave her a "soft chopped" diet, which is a texture similar to oatmeal all the time. Not only that, in order to get the food that way, the food is overcooked, pulverized, and rendered nearly tasteless (my Mom didn't do gravy). Then you have the issue of low salt diet, etc. I used to take my Mom out and she could eat the large chunks easily. They just didn't want to have to cut up the pieces of meat for her or risk her choking.

We also gave her a daily vitamin to make up for the tasteless stuff that she didn't eat. I was perfectly fine if all she ate was the muffin or cookie at MC. At some stage of life, any food, good or bad, is better than no food at all.

That said, the other possibility is that the food and water really does not taste good to her. When you visit, does she eat and drink what you give her? I would talk to her doctor and allow him to do a complete analysis to make sure she isn't suffering from some infection/drug that is messing with her smell and taste.

...also, if she is losing weight, some of the drugs that she is taking, might be an overdose now, which also will cause loss of taste.

...and yes, it could be near the end of life for her. My Mom said that water tasted bad about 2 months before she passed. However, tea and juices (those few that she liked) were perfectly fine. Eventually though, she didn't like the tea or juice either and her tongue didn't know what to do with cookies.

This scenario is very painful to watch.
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I think it may be time for hospice/palliative care. Some old_old people in poor health with no (or very low) quality of life may do their own "unofficial" version of VSED (Voluntarily Stopping Eating & Drinking) as EOL approaches. As I understand it, VSED can be a relatively less difficult way to make a Final Exit, but adequate medical support for symptom relief is needed in most cases.
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Follow up. We are moving into long term care section in the NH. Double occupancy. The person in the room now is on hospice care. Seeing the Future???
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My other of 94 years has been in a nursing home for over a year without eating. She went in at 125 lbs and rapidly lost weigh until she weighed just 80 or so lbs. She survives by drinking Ensure. She'll have some cake or something sweet at times but also now refuses wearing dentures so chewing is out anyway. Keep providing the nutrients even without eating and it appears you can survive
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Swallow test is negative. No issues.
will try to work with her but doubtful.
will update as necessary.
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Let's assume mom does not have a swallow issue. If she does, that's a horse of another color and end of life is approaching.

Without a swallow issue at play, and being obese ( you don't say HOW obese?), your mother can live off of her own fat for quite some time as long as she drinks some fluids. She may be repulsed enough by the non-junk food she's being served in LTC that she's flat out refusing to eat. It happens with very heavy people who are used to eating pizza and chips and donuts etc. They are repulsed by regular foods they do not normally eat, especially veggies, and cannot bring themselves to eat it. Throw in dementia and there is no logic to help them understand the consequences of their own actions. The stubborn factor takes their behavior over the top.

If I were you, I'd bring in one of moms favorite foods like pizza and see what happens. If she wolfs it down, you have your answer.

Wishing you the best of luck with a difficult situation.
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Thanks to all for your input. Swallow test is scheduled some time this week. We shall see. Never considered this fatal aspect of her condition. We learn as we go.
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AlvaDeer Jan 21, 2024
Tom, wishing you the best and hoping you will update us. Hard choices ahead. To me, a retired RN, I so fear tube feedings it is written into my advance directive that they are not allowed. It prolongs a miserable end with body skin breakdown and tragedies multiplying. I wish you the very best. Truly. And thank you for responding to us.
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Yes, I recommend palliative and hospice care be brought in. You are likely looking at the end stage which is when this happens. You will be discussing with the MD now, if you are the POA, choices going forward which will include forced feeding through peg or NG or allowing nature to take its course in providing a choice to eat of not. Also a swallow eval is required now to know if the swallow reflex is intact; it likely is, as with food no longer appetizing by look or by odor, this is likely a brain change.

Only the MD responsible for an individual can guide you now.
It is a merciful end to stop eating and drinking and in fact VSED (vountary stopping eating and drinking) is a choice for those who wish to do a final exit on their own terms; legal in almost all the states). She will be medicated with hospice so that those few days where organs shut-down caused restlessness and confusion, before coma, at medicated so that there is no discomfort.

I am sorry. I think this is end stage from all you say, but as I said, only the medical team can guide you now.
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"She complains about the smell of the food and that she can not swallow."
Is the staff aware she can no longer swallow? If so, has a swallow test been done? A person who can't swallow should not be forced to eat or drink, it could be aspirated and cause pneumonia.

If a test has not been done, it should be. But usually when a person can't swallow it means end of life. First thing is the ability to swallow is gone, then the body shuts down. At this point a feeding tube maybe recommended but I personally would not have it inserted. Not on a person who has Dementia and 84 yrs old. I found the Nurses can't suggest Hospice, the doctor does. Butu can request it.

My Mom shut her eyes and would not get out of bed 2 weeks before she passed. I was called and told she could no longer swallow. They were willing to give her the test, I said no call in Hospice. No more poking and prodding. Mom passed a week later.
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I'm sorry you are facing this, do you think she will eat if you bring in special treats or is this something more than anger and stubbornness? Has anyone contemplated trying an antidepressant?
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EngineerTom Jan 23, 2024
Offered her a nice chocolate shake and again she refused. Will keep pushing.
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Ugh. I saw this with my own mom. She didn't have dementia or anything like that. She went for heart surgery and never fully recovered properly. She refused to eat and kept pointing to the feeding tube when I would beg her to try to start eating. She couldn't or wouldn't. It was frustrating.
My aunt is a picky eater. She has dementia. She will not eat anything but oatmeal. However, if you make fish and vegetables for her, she will eat that, and only the expensive type fish like shrimp or salmon every day.
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When my DHAunt, 97 with dementia, went into the NH she wore a size XL pj. Now she wears a medium. She is less than 5’ and went from 140 lbs to 110.
She got sick about a year ago and was really losing fast. She had a speech study to make sure she was okay for swallowing. Had speech therapy. Is on an appetite stimulate, actually on her second one as the first one didn’t seem to be working. She needed to be hand fed for a few months and still requires a good deal of extra attention with her meals. She is on a protein drink along with her three meals. She is weighed weekly.
When I visited her this week she was eating chocolate pudding with her mashed potato’s and enjoying it.
She also does better on an antidepressant.

It is hard to know if you are doing anyone a favor to encourage them to eat if they are near the end of life and have no quality of life.

My goal is to make sure aunt is not neglected in any way that I can help. She clearly enjoys her food now so I’m glad we made the effort to get her back on track though it takes a good deal of effort to keep her at the 110.
She is certainly not worried about it. Once, when told she lost 10 lbs she said “good”.
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That was the case with my mom's sister. She recently passed away at 69.

Her husband said about a week before she passed that the hospice people noted she wasn't eating enough to sustain life and he told my mom milk and milkshakes were all she was consuming. She wouldn't eat really much of anything.

My mom gave me that update and told me "you can't make someone eat."
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"The body needs lots of water to carry out many essential functions, such as balancing the internal temperature and keeping cells alive. As a general rule of thumb, a person can survive without water for about 3 days"

Source: https://www.medicalnewstoday.com/articles/325174#:~:text=The%20body%20needs%20lots%20of,water%20for%20about%203%20days.

"Total starvation is normally fatal in eight to 12 weeks. In less extreme cases, however, where you are still receiving some calories - particularly if these calories include a high proportion of protein - being fat will help you survive much longer, because your body will be able to meet the majority of your calorie requirements from stored fat."

Source: https://www.sciencefocus.com/the-human-body/who-would-die-first-of-starvation-a-fat-or-a-thin-person

She is obviously taking in fluids.

I'm sorry for the distress this is causing for you.
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Do you think this may be a ‘game’ to say ‘you can’t keep me here in prison, I have to go ‘home’ and you have to care for me there’?
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EngineerTom Jan 23, 2024
I have seen some of that type action. She still knows how to play the game.
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