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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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I do have some ideas... so sweet is the last taste bud to go. That’s probably why she likes ice cream still.
Add sweet things she likes or may like now, to real food. Applesauce is a common favorite. So even if it’s applesauce on toast, or sugar added to old favorites like mashed potatoes with extra gravy or butter or jelly on top of some chicken! Try sweet things that may appeal to her changed tastes. It may sound horrible to us but these tricks work for some.
Otherwise I’d definitely try nutritional supplements. If the traditional kind aren’t palpable enough try Carnation instant breakfast. I compared labels with a popular nutritional shake years ago and they were identical. Her spouse loved Carnation but hated the shake that she was buying and was spending 3 times the money on as well!
Slim fast shakes are more palpable than a lot of the nutrition drinks available. Be sure to read labels for nutrient content. A lot of these drinks and ones marketed to children contain almost the same nutritional values as the adult brand shakes but are higher in sugar or flavoring for a younger audience.
Remember when you add shakes they contain a lot of protein so make sure she’s drinking enough fluid to flush out all of the protein.
If she likes chocolate ice cream buy chocolate shakes etc. I’ve seen patients live many healthy years on these alone.
Keep in mind her calorie needs too. If she isn’t waif thin now and you add a lot of drinks to her diet they are often calorically dense and she’ll gain weight.
I know it’s really hard to watch her not eating but her needs are lower too. Be patient with her. Pour the drinks into glasses or cups so they don’t appear to be a nutritional drink.
Have her drink through a straw if she can manage that, because you drink more and faster through a straw than a cup.
Hope something here helps! But if she isn’t super thin I wouldn’t feel an urgency to get her eating all at once. Anything you discover that she likes to eat will be a win that you can build on.
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Your experiences seem so similar to ours with my mom. It’s rough on all of us. I’ve found this delicious peach smoothie yogurt for children at Trader Joe’s that my mom loves! It’s full fat which she needs. She was drinking Ensure, but that had way too much potassium in it. Also, yogurt is an excellent probiotic and is wonderful for the body!
Hope that will work for you :)
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We tried what used to be her favorites in a blender. Be creative. Applesauce, oatmeal and cinnamon in a blender. Baby food. Be strong. At some point she will refuse to eat. That's when it will become extremely difficult and ther's not much you can do.
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If she likes ice-cream...a smoothie would be a good way to get plenty of healthy foods into her little body ...and she enjoy it
You can google..Tasty Green smoothie recipes.
..best to use almond milk...add an egg yolk or 2 (packed with nutrition & will help the brain). You can add super foods ..eg. acerola berry powder (highest form of complete vitamin c available) lecithin powder (for brain & nerves) , Fresh spinach leaves (don't use broccoli its very high in sulphur & will cause gas)
Honey for sweetening, vanilla (if you like). Try different combinations until you find one she enjoys
You can soak dried fruits in hot water overnight then blend them in to keep the bowels moving
Freeze some bananas & some strawberries/raspberries..Add a banana &/or some of the frozen berries to eat smoothie. It will make the drink rich and smooth
So many healthy possibilites
I have an 83 year old Grandfather and I do my best to keep him healthy & doing well. We don't live together, so i bought him a refurbished good quality blender
And have a box of 'ready to go packages of fresh fruits, herbs etc etc) delivered to him once a week.
(Its a service i found on FaceBook. Im sure you can find similar if you need it)
He actually makes his smoothie once a day & tells me he enjoys it
Loss of taste
Can and often is related to zinc deficiency. 30mg zinc tab after dinner each night will help in many regards. Yes, my grandfather takes it also :)
Im sure they have put your Mother on a truck load of Big Pharm Beauties...aka meds Google the side effects. Im sure the new bothersome symptoms are related to the side effects of the meds...And the combination of the meds.
Build her up with nutrition, massage, music, sunshine, fresh air. Keep her on a routine as much as possible. As the health builds the need for meds will decline..And hopefully you will be able to slowly and surely reduce them.
Good luck on your journey
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Smell and taste are the strongest senses to trigger memory.
Mom taught me several of her simpler recipes before I went off to college. I've cooked them since and have kinda matched her flavors. I use the same ingredients, cut them in the same size and shapes. My big reward is when she takes the first bite, pauses and looks up and says, "Mmmmmm.... this is goooood."
In writing this another detail occurred to me that might help. Serve it on an old plate she used when we were kids.
Fortunately, my mom has a good appetite and eats anything she is served. But she seems to really enjoy her old dishes.
Don't forget the most important ingredient, Love. Mom put her love for us in everything she prepared. While preparing her meal, think back to all the love she has for you, even now.
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i'd say you just have to deal with her schedule, trying to bend her to yours just isn't going to work and will lead to angst all around. as to what she eats, be as creative as you can to accommodate her taste and get as much nutrient as you can with it. try protein smoothie type drinks: boost and another brand sold in wal-mart which is a little cheaper and more flavors. maybe try taking her to ENT and let them do a swallowing test, it's a motion x-ray from the side that shows if she is swallowing normally. they will also give you some tips on how to try to get her to swallow her food, but i did not find them to work with my mom. my mom also had cancer at the end and wound up starving herself to death which wasn't pretty but it was quiet and very depressing. from february i'm still not over that part. feeding tube is like last resort if there is nothing else wrong with her, like cancer, but if she'll never eat on her own again, what's the point of that. i don't really know what else to suggest with your particular situation other than the first comments above, and to say be patient (hopefully more than I was at times), you have my symp/empathies, and good luck.
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Here's how it went down with my mom. About 1.5 years ago she stopped eating. Not absolutely but not enough to maintain her weight. She started at 120 pounds and bottomed out at 80 pounds in January when she did stop eating completely. That's exactly what my grand dad did before he died. He starved himself to death and there was no one there that made him eat. It's called a death spiral. I vowed that I wasn't going to let that happen to mom. So I started a concerted campaign to nag her to eat. Even with that, there was only 2 things mom would eat at all. Nutritional drinks and ice cream. I had tried those things before but she still didn't eat enough of them and lost weight. I went on an all out nag fest about it. I literally would ask her to take a sip every 5 minutes of the day. Most of the time she would tell me to go away and not do it. I started out being able to get her to drink 1, then 2, then 3 and finally 4. 4 nutritional drinks is roughly 1000 calories. That with a half a bowl of ice cream a day allowed her to put on weight. She's pushing 100 pounds now. For an elderly person to gain 25% of their body weight in less than a year is a feat. Here's the crazy thing. Now that she's gain all this weight, she has a much better appetite. I leveled off on the nutritional drinks at 2 a day when she hit 100 pounds. I have also stopped with the ice cream. She now eats regular meals with us. No cajoling. No nagging. I just giver her the food at meal time and she eats it. At first only some. Then more and now she finishes it all. It's like she made it past the no eating hump and is back to normal now.

Now I've talked about this before and I got flack from some who say that sugary foods like nutritional drinks, sugar milk, and ice cream is not a proper nutritional diet. I'll say what I said then. When someone is starving to death, it's all about the calories. People that get on the nutrition bandwagon in a situation like this have no clue about what they are talking about. My brother was one of those people. He would have a fit about what I was feeding mom. He kept saying it wasn't proper nutrition. Then we had a nurse come by the house and we had a little discussion about all this. What did the nurse say? It's all about the calories. He shut up after that.

As for the sleeping, what has really helped my mom and grandma maintain regular sleeping patterns is melatonin. Without enough sleep, all of us are not doing well. With someone with dementia, the effects are magnified. With mom, when she gets plenty of sleep she still pretty functional. When she doesn't get enough, I have to end up carrying her to the bathroom and to bed. She's just out of it.
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gryphon Nov 2018
i tried the same thing, whatever she would eat was something at all and nutrition drinks. i think the chemo did her stomach in because she wouldn't eat or drink enough to flush it, but before that she was going down the same road as your mom, getting her appetite back. it was like a cycle of not eating much. then the chemo did that recovery in. and yes, 1/2 an anti-depressant, a tylenol pm, and a chewable melatonin did the trick at night.
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I understand your frustration. We too endured our mother's degradation from the disease. There were similar disparities from who she was. She would spend hours sweeping the street and driveway along with the patterns that you have described. To put it bluntly, unfortunately it will get no better. The expensive drugs that were supposed to slow the degradation, might have made it worse. They were worthless. I wish there were some encouraging news to impart. The sad fact is that her situation will only get worse, making it almost unbearable to endure for those in the family who are engaged daily. We made the choice to care for her in the home which in the end required hospice. Her final days were ghastly, leaving us devastated. It was a difficult time for her and us, leaving us to question how someone who cared so much for others could be saddled with such a demise. During her final minutes she sat up, looked up and reached out; as if someone was there. Faith in Christ lead us through the ordeal. May God bless you and bring peace during this difficult season.
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sunshinelife Nov 2018
Someone was there ...an angel at the gate to help her across.
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COOL WHIP! I discovered that everything tastes better with Cool Whip, yogurt, baby food, rice pudding, puréed sweet potatoes!😁it worked for my mother and still does. As far as sleeping, I took my mother to a geriatric psychiatrist who tried some very low dosage meds, I.e. doxepin. That helped her fall asleep and stay asleep.
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Two weeks before my dad died he loved the Cheesecake Factory’s low-sugar cheesecake. I gave up on nutrition and let his last days be ones with whatever worked that was basically “soft”. He also loved scrambled eggs. For extra calories, I whisked an egg, handful of shredded cheese, and heavy cream 2-3 T in a microwaveable cup. Cook on high 1 min & 30-40 seconds. Mash with fork or keep it as a soft soufflé (of sorts!)
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Hello,
I hear and understand your discouragement with feeding an Alzheimer’s patient.
Have you consulted with her doctor regarding her sleeping pattern? This mom needs to have a pattern of sleep and wake.... restablush meal and snack times and stick to it without fail. If mom is not hungry at lunch then offer her snack then dinner and ice cream for dessert. No bribery necessary as she will eat when hungry; her appetite for eating is changing and no amount of forcing is acceptable, if she likes puddings applesauce topiaco blueberries jello smooth shakes....mash potatoe with gravy crackers soups, it’s ok for her to have them.....try small plates/bowls with tiny portions.... she may enjoy being a vegetarian without the bulkiness of meat.
I would stop encouraging and give her food warmly and remove it without any comments and talk about the next meal.....or the next dessert... Emi
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Hi, Hdrodlady54. This is such a hard issue for caregivers. I can tell you one thing that worked with my mom. She weighed 69 pounds when she came to live with us. We got her up to 89 pounds. We would pull through Whataburger and get those huge shakes, split them up into smaller servings and put Boost in them. Also, we would sprinkle a tiny bit of sugar on her food. Not kidding, she began to eat her food a bit better. Of course, you would not want to do this for a diabetic. As for sleeping, try to let the light (sun) in during the day. Close the curtains/blinds in the evening when it starts getting dark (early here with the time change) and leave a bunch of lights on so that it will be bright. Then when bedtime comes, make sure it's dim in the house and maybe open the curtain so she'll see it's nighttime. This helped Mom somewhat. But Sundowning is a part of this relentless disease. We just have to try to manage. Best of luck to you. Very hard road you are on. God bless you!
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Hdrodlady54 Nov 2018
We have actually tried some milk shakes and added boost and such in them.   She has started to drink about half.   At this point, I will take whatever we can get.   Thanks!
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Yes Ensure and sweet protein bars. A solid color plate and placemat is important too. Mom has good days and not so good days eating so supplement with the Ensure and protein bars when she does not eat well. Also, as one other person posted, make sure your mom does not have a UTI.
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Hdrodlady54 Nov 2018
We have her checked regularly for UTI's, but she has had a few here and there.   Thanks for your input!
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Yes Ensure and sweet protein bars. A solid color plate and placemat is important too. Mom has good days and not so good days eating so supplement with the Ensure and protein bars when she does not eat well. Also, as one other person posted, make sure your mom does not have a UTI.
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I'm sorry to hear about your mom's diagnosis. If she loves ice cream, you could try to freeze ENSURE and serve it to her as an ice cream. People with this diagnosis often loose their swallowing reflex as the sickness progresses, which could then lead to aspiration and infection, often fatal. You could try finger food. Caution about hot dogs, cut them lengthwise also.
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Hdrodlady54 Nov 2018
I'm not sure that it's totally related to the disease.   Yes, I know the disease causes this, but I wonder too about her meds.   Sometimes meds can make food taste horrible.    We will get through it, giving her ice cream with Boost in it.   I will take anything I can get at this point!   Thanks for your input!
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We make milkshakes with Ensure as the liquid. Then we add as many calories as we can. At least that way, they get some nutrients and vitamins from the Ensure each day.
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Hdrodlady54 Nov 2018
Agree!   Sometimes we have to do whatever we can.   Thanks for your input!
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Great advice from Vera. It is amazing the effect the red plate can have. I am sure most of Us have said that after Our Mothers had been diagnosed with alzheimer's "how We did not pick up on those signs sooner ? I would suggest giving plenty of the foods Your Mom prefers to eat ice cream, yogurts, cottage pie, and lots to drink. You are doing great
Hdrodlady. Alzheimers is a cruel disease of the Brain which is preying on too many of Our Elder Generation.
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Hdrodlady54 Nov 2018
It is horrible.   Our family has had a really rough road since January, 2018.   However, we are somewhat "stable" now.   Stable used to mean steady, doing good.  Now it just means nothing too nuts is going on.   Weird how our definitions change?    Nothing stable about this disease.   My mom's doctor said it best - it's a moving target.    I appreciate your input!
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Hi,
I’m experiencing the same thing with my husband. He’s only had a diagnosis for 19 months.
It’s been really hard.
First he became nocturnal. Then started eating very little. He has chronic UTIs’, chronic constipation, chronic dehydration. Not to mention chronic office visits. Lol

Its a very demanding situation. However, I’m learning, and accepting that I’m not super woman. I do the best I can with what energy and emotional strength I have. Some days are better than others.

My my suggestion is do the best you can. God knows your heart even when your performance isn’t where you’d want it to be.

A situation like this has you talking to God ALL day long.
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Hdrodlady54 Nov 2018
God and I have gotten quite close in the last several months.   You can only do so much.   Sometimes we have nothing left in the tank to give.   We have to take a few days off to recharge our own batteries or we are no good to her.   I'm sure it is the same for you.   My heart breaks for anyone going through this.    Thanks for your input and I will say a prayer or two or three for you!
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Try a red plate
yogurt, cottage cheese, soup
dinty more meals and Vienna sausages are great
make sure she doesn’t have a UTI it can cause problems
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Hdrodlady54 Nov 2018
Thank you!   I will definitely try everything suggested.   Sometimes we just need input from others to get our brains going again because we are so drained.   I appreciate your input!
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Try writing a food board of what what ate when and let her choose what she eats. I think we bought Dollar Tree popsicles and single serving pies and hot chicken wings for months. There are all fruit/veggie pops now & we'd try to slip those by. Same response "this tastes like crap" to the same things he used to love. We let him season things himself. Most everything needed salt and cayenne pepper or was sweet junk food. I mixed dates and psyllum husk into chocolate almond milk. Dairy had started to cause more mucus than he could process. Aside from chicken wings he stopped eating meat, ate veggie versions. For awhile things needed to be topped with spray cheese (used to hate it) or frozen whipped cream. We took him to the grocery one time to see what he'd choose, took photos of him at store as proof. All this was a normal process of his health declining and he was a control freak about the food. Would tell me/watch me the entire time and I let him interact so he'd not have an excuse to not eat it. Also experienced the odd sleep hours.
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Hdrodlady54 Nov 2018
So frustrating, but we have to do and try everything we can.  As with the meds, no one thing works for each person.    I appreciate your input!
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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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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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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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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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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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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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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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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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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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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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