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She has refused to eat and eats very little now, going on the second week. She will eat ice cream, but not any "regular" food. We have cut food into small bites, tried not to overwhelm her, had others try to feed her. We are kind of at our wit's end! Very frustrating! She has only been formally diagnosed since January, 2018, but in reality, this has been going on for at least five (5) years. Amazing how you can see those signs now, but we clearly didn't recognize them when they were happening. Any ideas are most appreciated. She says everything tastes like "crap". Her sleep patterns are all over the chart. Sometimes she's up all night and then sleeping during the day when meals are offered. Other times, she sleeps all night, but then appears to be dozing still during the day.

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Every answer here is right bcs no two patients are the same. My mother had double whammy of MS and early-onset Alzheimer's. Same basic downward nutritional spiral with craving for sweets as frequently mentioned. As her disease(s) progressed, we moved to smaller and smaller portions cut into ever-smaller pieces. Ultimately wound up relying essentially on purees which she'd "drink" using a straw. Some days she'd eat (drink) well ... other days, not. In the end, she wound up in a nursing home. They wanted to insert a feeding tube. My father couldn't refuse so he allowed me to make decision. I opted for no tube. After 20+ years of virtual paralysis, minimal cognitive interaction and no quality of life, it seemed horrific to condemn her to another XX years lying in a bed starting at the ceiling. Do what you can but do not be hard on yourself if you can't achieve what you feel are optimal results. Also remember, dying can be a long process but its natural even though our society refuses to accept it. Keep her comfortable but don't fight the inevitable.
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Hdrodlady54 Nov 1, 2018
I agree with you completely.   If she doesn't eat anything, we have already made the decision to not do any kind of intravenous feedings.   Nature will take its course.   Although it is very hard, her quality of life is so poor that it was easier to make this decision.   We will continue to strive to get something in her.   Thanks for your input!
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Let her eat what she will.

Any calories are better than nothing and quite frankly with Alzheimer's shoot for quality and forget about quantity.

3 months happy eating ice cream 6x daily or 3 years miserable not knowing who is feeding you or who you are?

I'm sorry that your family is going through this awful disease.
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Hdrodlady54 Oct 29, 2018
That was my initial thought, but as with anything with this disease, you start to second guess yourself constantly.    We are going to put some Carnation breakfast powder stuff in her ice cream and maybe that will give her something.    :)   This disease is truly horrific.
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I understand how you feel. When I look back on my mother’s behavior I realize she was showing signs well before she crashed with a UTI and was evaluated when she was in the hospital. My mom seldom ate much in the nursing home. At one point, she had lost 12 pounds in a month. They tried to get her to drink Ensure, but that stuff tasted so gross I don’t blame her for refusing it. I tried, at least once a week, to stop at McDonald’s at get her a cheeseburger and fries, which she loved. I also kept her stocked with pudding cups, chips, crackers and chocolate bars. I didn’t worry so much about a “healthy” diet. That was fruitless and that time had passed since she was in her 90’s.
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What we were told is let nature take its course. My dad wasn't eating anything and the SNF wasn't waking him up for meals. My mom and I were concerned as if he wasn't eating he would die, but I guess he was dying anyway. We insisted they wake him up to feed him one day and they did, and he threw up, and aspirated. Died later that evening. Not saying this was the real cause, he was on a very downward trajectory anyway. But better to just let his body decide when to eat rather than force food which may aggravate things at least in the short run.
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Hdrodlady54 Nov 1, 2018
I agree completely.   We are not going to do any intravenous feedings, etc.   Her quality of life is so poor now that I'm not quite sure she hasn't just given up.    The few moments when she does have clarity - she clearly knows it's bad.    I'm sorry for your loss, but do appreciate your input!
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Hdrodlady, It is the most brutal way to loose a loved one.

Thats a good idea with the carnation instant breakfast, will she drink milkshakes? You can always add fruit to get some fiber in her diet. I personally love chocolate and banana, strawberry, pineapple, coconut, peanut butter, mango, oh, I guess chocolate and anything .

If she doesn't like shakes, you can add the ingredients, blend and refreeze.

Try not to get caught up in all the what if's, maybe's and second guessing, just when you think you've got it, it changes.

Focus on safety and wellbeing with out taking her reactions to heart, if she eats ice cream, she is not hungry, if she needs to go to the dr and doesn't want to, oops, sorry you need to mom, you get the idea.

You can do this!
🤗Hugs for all you do!🤗
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OldSailor Nov 1, 2018
Thank you for the suggestion of the carnation instant breakfast. I hadn't thought of that. Been doing the fruits, ice cream, stopped the puddings for a while.
She likes McD spicey chicken sandwiches once in a while. At least it is some nutrition.
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This might not apply to your situation but if we're feeding mom and the t.v. is on she will not eat.  Once it's turned off it's easier, not perfect but easier.  We have a hard time getting her to open her mouth sometimes and when she drinks she bites the straw.  Can be very frustrating.  I just don't know what we'll do when we can't get her to open her mouth.  She is staying home until she goes to Heaven so we'll definitely be needing more guidance when that time comes.  Regarding sleep, how about some sleeping medicine?  My mom takes Trazadon and sleeps all night.  It's a life saver.  I know some people say NO to sleeping pills but there comes a time when you have to do something.  Not only for her but for your family too.  All my best.
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Hdrodlady54 Nov 1, 2018
Thank you for you input!   We are trying all suggestions to see what, if anything, will work.   Whatever it is, it will work this week, but not next.   Very frustrating!
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We offered scrambled eggs with cut up bits of sausage then poured Maple syrup on that. She fed herself for awhile then wanted us to spoon-feed, then just got too tired to eat. It's the Alzheimer's/dementia process and difficult to watch but SO normal! Our Hospice nurse explained it's more difficult on the body to take in food/nutrition and eventually water when it's trying to shut down. Dehydration actually acts as a sedative effect, the body's natural way to die. It's hardest on loved ones watching, but this is the point where it's not about us as survivors but about the one preparing to die. Offer whatever sounds good to your Mom .. yes, even ice cream! Our Hospice nurse had a patient that lived on ice cream for a couple months! And when nothing sounds good, let her know that's OK.... and YOU are gonna be OK! 💜
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Hdrodlady54 Nov 1, 2018
Thank you and you are so right.   We figure she's earned the right to eat whatever she wants, whenever she wants.    We are trying a lot of the suggestions here and just seeing what works.   Thanks for your input!
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My mother goes thru periods when she doesn't want meals, but asks for chips, ice cream, candy, etc.; that's when I get creative. I make milk shakes with nutritional supplement powder and her favorite ice cream and grind pills to hide in applesauce/pudding with extra sugar/honey to mask the taste. At this point, the sugar is the lesser evil, so I give it to her, sparingly, still making it seem that I'm giving in. We live in a medical marijuana state, so a tincture helps her appetite, and to calm some of her anxiety about eating; all AD patients I've known eventually believe family is trying to poison them.
As bad as it may sound, treat her like a toddler trying to have bad eating habits, sneak in the "good for you" foods
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Hdrodlady54 Nov 1, 2018
Thank you for your input!   We are trying everything suggested.
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At one point I had a tall skinny 9 year old daughter diagnosed with juvenile anorexia. I told her that proper milkshakes were supposed to have 2 eggs in them, and shops only left them out to save money. It was a success that might help you too!
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Hdrodlady54 Nov 1, 2018
Definitely an idea!   We are open to trying everything.   Thanks for your input!
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In my experience with Alzheimers is often times they are looking for a particular taste. Some taste buds stop working before others. I have had residents who only wanted salty tasting foods like puff corn, salty rice, etc. And then there were others that no matter what was served we added something sweet, and they would eat it. Adding brown sugar, honey, maple syrup, putting out a sugar shaker instead of salt, or even ketchup worked. Sadly there is no "key" to what will work, just trial and error. Everyday may be different, and PATIENCE with meal time is definitely key too.
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Hdrodlady54 Nov 1, 2018
Agree with absolutely everything you said.   Thanks for the advice and input!
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