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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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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 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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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 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 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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Since 2012.
Cannabis edibles 10-15 mg. Candy Bars and gummies are the easiest to calculate size/dose.
Edibles can take 1 or more hours to have effect, but it is long lasting, 5-6 hours.
We administer concentrate 8 AM and 1 PM.
I dose of concentrate is the size of a half grain of rice.
Cost is two dollars per day.
Result is a calm with voracious appetite (munchies) and much laughter.

The 1PM dose effect diminishes toward evening and time for sleep.
Busy, productive days afford good sleep.

Middle of the night seizures require smoking for instant relief rather than the delay of edibles.
We were never smokers so I administer (shotgun) via Cpap hose and mask.
The hose buffers the smoke to minimize irritation and contains the smoke to not waste into the air.
2 'hits' of high THC Indica ( 20+ mg) stops seizures within a minute and calms for the rest of the night. Wake up smiles ensue.

Indica for nightime calming and sleep.
Sativa for daytime clarity and activity.
Smoke lasts less than 1 hour in contrast to edible 5 hours.
Over the years we have found which strains work best.
Medical grade cannabis is regulated and consistent.
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cetude Nov 2018
I know marijuana is the ïn thing"to do but you give that to an elderly person they will be at much higher risk of falling. One single fall can be quite fatal including broken hips and brain bleeds. They have balance problems without narcotics but add narcs they will be at higher risk. They will also become more lethargic, which will make them more immobile and they will die from the inactivity. I would never consider that option unless they are actively dying. Know the side effects of pot and if you as a caregiver can live with them falling more often..
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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 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 2018
Definitely an idea!   We are open to trying everything.   Thanks for your input!
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I have started to add some Lumpia to her diet. She ate four out of six today. Check them out. Some have several veggie and little meat in them. They are similar to the chinese egg rolls (finger food).
The visiting nurse was here and favorably impressed with her appetite today.
Just wanted to slow her weight loss. It seems to be working.

Wish you the best of luck.
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Hdrodlady54 Nov 2018
Thank you!   We are using and incorporating all suggestions.    I do appreciate your input!
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There is an article here at AgingCare that addresses this.

It says, "let them eat ice cream." Your mother can't help that her taste-buds have changed - I went through a period of months when all my DH would eat was Fish Sticks.

He also wanted Hot Cocoa every morning so I used Ensure Plus Chocolate with a little syrup in it. He was happy and he got 350 calories this way.

Remember, it's still food and eating anything is better than eating nothing.
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Hdrodlady54 Nov 2018
Definitely better than nothing.    It's a moving target with this disease.   Thanks for your input!
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Mom has end-stage Alzheimer's and the ONLY thing she likes are black beans. I give that with nutritional supplement; granted the protein levels are high but she now eats. And yes it takes over an hour for her to eat. You must be very patient. Do not rush meals. Put THICK IT in all liquids because people with end-stage Alzheimer's will get dysphagia and have difficulty swallowing. It MUST be honey consistency. Actually her nutrition is great. We both never eat meat -- and if she did I would be fearful of giving her meat because it is a choke hazard.
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Hdrodlady54 Nov 2018
Thanks for your input!   We are trying all of the suggestions to see what happens.   I do appreciate your suggestions very much!
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Alz. Disease "is" horrific, so in that light, I gave my mother whatever she wanted. Who am I to to take away her pleasure of eating. I made milkshakes with crushed up vitamins and whatever she wanted. The body will start to shut down and cannot process a lot of different foods. Give her whatever she wants. At this point, it is her "quality" of life that matters. This has been my experience the past eleven years. Good luck and God bless you.
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Hdrodlady54 Nov 2018
Agree completely!   What works today, will not work tomorrow.   We are open to all suggestions.   Thanks for your input!
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I agree that letting her eat anything she wants is better than not eating. Still, i get my mother to eat fruits and veggies by making them fun to eat. I bought a book on bento lunches which shows how to cut carrots into flowers or fish, make little rice balls that look like panda bears, put faces on just about anything. Fun food and it's easy to eat with her fingers. It makes her laugh.
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Hdrodlady54 Nov 2018
I'm glad that your mom can still laugh.   When my mom is having a good day, we can get a smile out of her and it just totally makes our entire day.   Frustrating is definitely a term that gets used a lot, but we are trying near every suggestion.   We appreciate your input!
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Oh I struggled with this with my mother but she would drink those Ensure drinks which were better than nothing. Some days she would eat, some days very little but always enjoyed Ensure.
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Hdrodlady54 Nov 2018
That is wonderful!   I think sometimes we have to just take what we can get from them.   If they eat, great.   If not, maybe tomorrow.   Every day is a new experience.   Thanks for your input!
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Orgain protein shakes (health food store) make a decent substitute if she likes them. Fruit cups, apple sauce. Creamy mashed potatoes w butter. Try to bring all of her favorite foods forward and make them easy to eat.

However...how can I gently say...as one ages, our appetite naturally decreases...and especially, as the body begins to prepare for death.

Blessings to you and all that you do!
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Hdrodlady54 Nov 2018
Thank you for your input!   We are trying whatever we can think of and incorporating suggestions from here.
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You may be at the end of having traditional "meal times".  try leaving snacks and finger foods that she likes around.  She enjoys ice cream, so get some Ensure and make shakes with fruit and/or peanut butter, freeze Ensure puddings.  Cut sandwiches in quarters and offer frequently.  As far as sleeping, it is very important to keep your mom on a schedule with purposeful activities that she can be successful with.  Think about Adult Day Health ("the club") a couple times a week.  Avoid long naps but encourage quiet time or short nap for about 1-1.5 hours in early afternoon.
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Hdrodlady54 Nov 2018
Thank you so much for your input.   We are trying all sorts of things, but everything here is very helpful!
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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 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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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 2018
Agree with absolutely everything you said.   Thanks for the advice and input!
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Sweet is the last taste bud to go, try sprinkling sugar on her food. Also, she may be overwhelmed by the amount of food on her plate, try using a smaller plate and just putting small amounts at a time on the plate.
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Hdrodlady54 Nov 2018
We have already tried smaller portions, but are definitely going to try the sugar.    Thank you for your input!
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Cream soups & Boost.
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Hdrodlady54 Nov 2018
Thank you for your input!
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There’s 40 things you need to do simultaneously. Dr Dale Bredesen has reversed symptoms Fish oil, 2-4 g, low carb high fats huperzine, (tastes nasty put in smoothi) lecithin, blueberries , alternate probiotics, coconut oil or MCT oil, magnesium zinc etc etc .the list is long but gets easier . If she can chew and not choke, arrange clams cut in half, blueberries , pieces of avocado. You need to experiment. My moms on these things and is totally manageable now. Sleeps through the night. Walks and is starting to get up again from the toilet without resisting . After you sneak the supplements into the ice cream, her mood will change almost immediately. Then you need to get her up and walking 15 min at a time or massage her legs and pads of her feet to start. Don’t know her age or issues but William Walsh has also reversed symptoms. It’s basically a bunch of deficiencies that once corrected, the body works again. Get the best labs from functional medicine doctors. Good luck . Google key words; Bredesen protocol, list, reverse Alzheimer’s... (ignore naysayers) Start getting familiar with metabolism and creating purposeful activity after her mood gets back to some stability. Bring children into the house. Get her a physical therapist order from the doctor so she get up and out into Sunshine . If you are rich or can afford a practitioner, it might cost $1000 a year to get coached . There’s also a place you can go for $20,000 and they treat your mom for 2 weeks and show you what to do. It’s very hard to give the supplements initially but go slow adding the supplements into her ice cream . You can also mix icecream with squash and almond butter and blend it and refreeze.
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Hdrodlady54 Nov 2018
Thank you so much for your input!   We are experimenting with lots of things from all of these posts to see what, if anything, works.    What works this week may not work next.   I do appreciate your input though!
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Going through the same experience, a lot of good advice here
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Hdrodlady54 Nov 2018
You are so right!    Prayers to you and everyone else.   Hardest thing ever!
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I care for my mom at homes as well but have not yet had eating problems other than she can't eat certain meats because she can't chew right. Have you tried baby food or pureeing some foods. Also protein drinks (Ensure, Boost) that taste good. Maybe make into a malt with ice cream to help the flavor. If sweet is her thing maybe puree sweet potatoes or butternut squash for a thick soup. She may be depressed as well. My understanding is at some point she will just stop eating altogether and then you have to make the choice whether to make her eat (ie feeding tube) or let nature take it's course. I would never do a feeding tube but that's each persons call. As for the sleeping, if you can make her get up at a certain time each morning and go to bed at a certain time. Once she gets on a schedule it might help. Try giving her melatonin about 1/2 hour before you want her to go to bed. She will get sleepy and go to bed. Worked wonders for my mom. Hope any or all of these help. God Bless and stay strong. You are doing a wonderful thing caring for your mom.
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Hdrodlady54 Nov 2018
I so appreciate your input!    I agree with you about the feeding tube.   We have made that decision already.    We are hoping she will accept some of the options we are now offering and eat something, anything.   Thanks for your input!
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When my dad's plate was full of food it would take away what little appetite he had - try cutting it up but only let her see 2 or 3 small bits so it doesn't overwhelm her & put rest out of sight - some of institutional food is leaves much to be desired so try thin pickle slices, chips etc to augement

To be satisfied by a meal humans need 4 things : something salty, something sweet, something crunchy & I forget the 4th one but that is why restaurants serve sandwiches with pickles

You didn't say how old your mom is or what other health issues or where she lives [NH/AL] so we can't give anything specific to her situation - yes hind-sight is 20/20 & we all realize looking back what issues should have been red flags but didn't ... I hope you & family aren't being hard on yourselves because there are thousands if not millions who are in the same boat
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Hdrodlady54 Nov 2018
My mom is 74.    We are just trying to offer her whatever she will eat at this point.   Very hard to watch, but we are not going to feed her intravenously.   Nature will take its course.   Hard to accept, but we know that her quality of life is so poor now, I cannot imagine going on for another ten years.   Although we do realize there are tons of families where that has happened.   Thanks for your input!
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Follow her lead. Do some trial and error to find things she will eat (in addition to ice cream) and offer them. I could count on one hand the number of foods my dad eats and only 1 or 2 of them are 'healthy.' He's been eating like this for several years and his blood work is better than mine. Don't stress over a balanced diet.

You are not alone in being unaware of the early signs. I work in senior living and I missed them in my own father. Virtually all of his money was frittered away by the time we stepped in. When we look back, it all looks so obvious, but when you're seeing little clues here and there, it often doesn't paint a whole picture.

Ironically, I can spot it in other people even at the earliest stages. Objectivity is certainly one reason, but the other is that our parents natural mode is to parent us, so they reflexively mask symptoms even when they are aware of them and troubled by them.
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Hdrodlady54 Nov 2018
Agree!   Other than this, she is very healthy.   We have made the decision to let nature take its course, but we are offering her foods of all kinds to just try to get her to eat anything at this point.    Thanks for your input!
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This response is a result of my own experience with my mother (with dimentia/Alzheimer's), and should not be taken as expert advice. Early symptoms began at 85 and progressed until her death at nearly 93. My mother's Alzheimer's condition was moderate in comparison to some people. The symptoms you describe are common, a natural response as end of life nears, complicated by Alzheimer's. Those symptoms were experienced by my mother, became more noticable during her last 2 years, mostly during her last few months of life. After 5-6 years of taking 1 type of Akzheimer's medication, we supplemented with another one, and that seemed to help some. They lose their taste buds, crave sweets. doze alot, possess sundowners, sleep eratically, etc My mother's organs started to fail in her last couple of weeks of life and she was unresponsive for the last few days with no food or water. She could hear until the end with small reactions. I hope this helps.
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Hdrodlady54 Nov 2018
I'm so sorry for your loss, but agree with you completely.   So very hard to watch this happen to those we love.    We have agreed to let nature take its course, do what we can to help her and offer her food, but we are not going to force her to eat.    Thanks for your input!
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My late dad used to hide the food in drawers and cupboards, even under the blanket. He would complain about too much food, even if it was a little. I think it has something to do with the taste buds when everything starts to taste the same, unless it is chocolate, ice cream, cakes or something they enjoy. He had a sweet tooth and enjoyed sweet treats. We decided that anything is better than nothing.

It is hard for the family to watch, but we tried our best.
Patience and gentleness worked best for us with him.
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Hdrodlady54 Nov 2018
Definitely agree with the patience and gentleness.   Very hard and frustrating, but we are pushing through.    We have taken a lot of the suggestions and are trying different things to see what happens.   Thanks for your input!
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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 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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While I'm the one caring from a distance for my Mom, she herself cared for her Mother through the last 8 months of her life on her own. My grandmother loved Popsicles and ice cream and Mom even got her to drink Ensure and Boost by making those into milk shakes. My Mom loves junk food so I make sure to keep her in high supply of snacks which include pudding cups, fruit cups, glazed pecans, Belvita breakfast bars, muffin bites and of course, chocolate and peppermints. Oh and marshmallows. For some strange reason she just loves eating those things by themselves. lol Good luck finding something she'll enjoy eating.
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Hdrodlady54 Nov 2018
Thank you!   It is very stressful and frustrating, but with groups like this, we can all make it through another day.   I appreciate your input!
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I bought a Nutribullet and made mom shakes. These shakes had ice cream and milk, but I fortified them with frozen berries and bananas, yogurt, ensure, and carnation instant breakfast. Easy to swallow and delicious! Also, you can throw any cooked vegetable (think squash, broccoli, asparagus...) add chicken broth and a bit of cream and it's a delicious soup.
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Hdrodlady54 Nov 2018
Thank you so much for your input!   We are willing to try anything at this point.    :)
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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 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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