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Hello all caregivers out there. My Mom has severe dementia/or alz. She doesnt know me, walk or talk barely but has fabulous facial expressions that show me her sense of humor is still there occasionally. I take 2+ hours each morning and evening feeding her. Inbetween her falling asleep and not wanting to open her mouth, then smiling and loving her bites, then stopping again. Its a vicious cycle of trial and error to get food into her mouth. Today was the worst so I am writing in for suggestions. After reheating her food inbetween her breakfast naps, I barely got one french toast into her. Once 3 hours passed I decided to at least get her fluids in and got her to finally finish 10 oz of decaf tea. Whats this about, do I only feed her if she willingly opens her mouth or keep doing what I am doing, feeding her hours on end? She seems to want to sleep more some days she barely sleeps and will sits with her eyes open staring at the ceiling with occasional outbursts of laughter and chatter to no one, shes a peach :o) Would love any ideas.

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Thank you both, small bits through the day is a good idea but I envision her asleep by the time I microwave it, but I will give that a shot! Yes Mom is with me in my home, its been 5 years now. If this is not at the end stage what could the end stage? I hear the end stage they stop smiling but other than that, she cannot walk, talk, or see anything that I know of. My adult son just came in and keeps saying hello to her and she just stares. We do music all the time and it used to get her feet going but now thats been a long while. I tried Hospice but they told me she is a 2 person assist and they cannot send two people. The person they send said she hurt her back trying to turn her, mom resists and is strong when she needs to be. She has no quality of life other than we try funny short stories, sing, and tell her how beautiful her eyes are, etc and she smiles and raises her eyebrows. Loves compliments and I talk to her as if she is normal. Funny , when my husband asks her to come out and shovel, she laughs! To look at a picture of her you would think she is perfectly normal and to come visit when she is all bathed, hair done and beautiful sitting in her recliner she looks easy, she is far from easy! lol I love her so much, just wish she would eat without all of the struggling. Sometimes I say over and over loud "oh look, I made this for you!!!" and she opens her mouth, then after a while that doesnt work and I try something else, its very difficult. I wonder if I should be just letting her eat when she wants to without all the coaxing and continual trying? I can do shakes and thicken them with thici-it I suppose but is that a true meal? Thank you both again!
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Reverse, Mom has been doing this for over a year now. She still loves to eat, but is so easily distracted by every little thing. It takes me anywhere from a half hour to an hour to feed her 3 times a day. It's the MOST frustrating thing that I have to deal with. When she isn't cooperating, I walk away and try again a few minutes later. Sometimes I can get her to eat 3 or 4 bites in a row, but most times it takes lots of patience and time. She has PD and dementia and can't do anything for herself due to constantly being distracted by something she sees, or thinks she sees. She is always mumbling when she has food in her mouth too. She can still drink from a straw, but even that is something she forgets how to do. She has not been diagnosed as end stage yet. She also holds her breath when in bed and puffs her cheeks out to the point I think they will split open, yet she will not open her mouth to breathe. The neurologist says this is a habit she started and now can't stop. Same with clamping her mouth shut when it's time to eat. Sometimes she just plain has no clue what opening her mouth means or even eating for that matter.
If your mom is not end stage, then she just doesn't make the connection and you will just have to continue on the way you are. Try to feed her soups and other liquid type foods so she doesn't get dehydrated. That will make her act worse. Does she have a UTI? Mom is impossible to feed when she has one.
There is also a product by Nestle called Benecalorie that comes in small cups like coffee creamer. The liquid packs a punch at 300 calories and can be added to food or drink for people that need to put on weight. Most pharmacy stores don't stock it, but can get it for you if you ask.
I am so glad to know I am not the only one dealing with this problem! Everyone I talk to about it looks at me like I'm crazy!!! It's so hard! I hope this info helps you and if you have more questions about it, let me know!
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I agree with you, vw9729. If this is the end stage then Hospice is an excellent option.
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I'm sorry to say, but it sounds like she is on the decline. Is she in Assisted Living or at home with you? Has anybody suggested Hospice to you? I'm not in the medical field, but this is very similar to what my mother-in-law is doing. Some days she eats nothing and barely takes a drink of water, and the next day she'll eat just fine - and sleeps all the time or stays awake some - and stares at the ceiling or wall. It varies each day. This is a decision you must ponder on - such as does she have any quality of life? Or is her body just hanging on because you are able to keep it somewhat nourished? It's very sad - but we decided my mother-in-law had absolutely no quality of life and her Dementia doesn't put her in a happy place. Unfortunately at times but fortunately at others, the medical field has advanced so much that I believe it has caused the elderly to live longer but their life is not always better. So she's with hospice and we're letting nature take it's course with her. I'm sorry.
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I take it that your mother is not in end stage, where not eating can be part of the dying process.

First, hugs to you! How every difficult. Then, a few suggestions:
1) Ask her doctor if she is a good candidate for a medication to help her be more alert during the daytime, such as Provigil.
2) Feed her smaller amounts more frequently throughout the day.
3) Try playing some lively music from the era of her youth during mealtimes.
4) If she drinks more readily than she eats, use milk shakes to get both nutrition and liquids in. A scoop of ice cream, a packet of Carnation Essentials (instant breakfast), a few strawberries or other fresh fruit, enough milk to give it a drinkable consistency and you have a meal in a glass. I sometimes used Boost or Ensure instead of the Carnation powder.
5) Realize that she may not need as much food as you do. If she is not losing weight she is probably getting enough.

Enjoy her laughter, even if you have no idea what it is about!
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