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For the last couple of weeks we've noticed that mom isn't swallowing all of her food. I see her breakfast in her mouth hours after she's eaten. The weird thing to me is that she doesn't even know that it's there and that it's not bothering her. yuck! I'm just wondering if this is typical in late stage ALZ or something else. She is on Hospice and can not longer feed herself. What can I do to help get the food down and out of her mouth? Any light shed on this will be greatly appreciated.


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Dysphagia....when they leave food in their mouth....Sometimes they just forget to swallow, like they forget everything else....thickening stuff was put in her food and drinks and it helped. So many changes with dementia...everyday something new.
Her stories were the best...Tom Selleck, the police commissioner of NYC went to Washington, and arrested John Wilkes Booth for killing Lincoln. Brought him back and put him in jail.
You just go along with the stories, don't say they aren't true, because that's what they believe.
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Sewingsh Dec 19, 2018
That’s precious to believe Tom Selleck arrested John Wilks Booth!
He would have taken care of that jerk!!
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I stopped feeding my mother once my "common sense" started working and I realized that the hospice nurses (like in the Army.... the Code Red....?? does it ring a bell..?)were just following orders of the doctor who had already written in my mother's documents "2 weeks" as the time of life THEY (the hospice doctor and the boss of the hospice) " had granted" to my mother. So, they continued giving to her their "cocktail of death" to hurry up her death! This is what THEY, THE HOSPICE bosses call "COMPASSION"!? I told them that in my dictionary that word had a very different meaning, but to not avail... Please read also the following : https://hospicepatients.org/euth-acct-seven-ignore-poa-drug-cocktail-oct-2010.html
Please, use your common sense if you really, really, love your parents. It is our time to pay back to them for their time and dedication to us when we were kids.
I am pretty sure that there is some few CNA, nurses, etc that really care about these patients, but .... they must follow orders and they will not have time to dedicate to your own parents the same attention that you expect from them!
So, please, keep your loved ones at home. Or at least, have a hospital bed at home to facilitate what should be your task every so often and the one of your siblings, or others that might come to provide services or help you with it.
I will always be thankful to this webpage for allowing me to tell all about my own and sad experience I had with my mother in the hands of those so-called doctors, the hospice and my siblings that did nothing for my mother!
Check the medications you mother/father is being given by nurses; google the side effects of them.... you will find the answers to why your mother is in that state you see her!! And then, you will act accordingly!
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Reply to kilhefner
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Same problem here.

Two remedies that have been helpful to us.

1- When my wife forgets to swallow and no prodding does the trick, we give her a spoon of a food which is in contrast to what she has in her mouth, for example a spoon of ice cream.

2- We have a portable suction device, much like what the dentists use to get rid of the water in the mouth of the patients when they work on their teeth. It operates on electricity and batteries which means we could take it along when we were going our of our home. You can suction the leftover food from the patient's mouth. My wife sometimes stopped swallowing right in the middle of her lunch or dinner. We suctioned the food out and she would start swallowing again. This is important and a must to do because the food can get aspirated and cause lung infection.
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Reply to msamada
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Her brain may be so broken that she has forgotten how to swallow. Seek out the help of her neurologist.
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Reply to Llamalover47
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Thanks for all the information. I can use most of it. This is awful 😳 what’s next!!
mom is living in a facility so I will talk to staff about it tomorrow thanks 💕💕💕
Sissy
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Reply to Sewingsh
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Could be Dysphagia - talk to her physician about having her tested.

My DH had Dysphagia and all it took was thickening his drinks/foods.
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Reply to RayLinStephens
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When my mother reached end stage dementia, she fell asleep while I was feeding her, just after she would take a bite she fell asleep and did not swallow. I had to wake her up. After we put her in a nursing home, every morning when I arrived I would find her mouth still had food in it. So I washed it out and brushed her teeth which they had not done, I stayed the day and fed her lunch and then supper or dinner what ever you call the evening meal and each time I cleaned her mouth. I know that every one can't take the time that I did but if I didn't she would have had quite a bit of food in her mouth by bed time. She only lived 2 months in that home and while she was there she got gangrene in her foot because they did not take enough time with her. At home I washed her feet daily and made sure they were dry. She was diabetic. Nursing homes do the best they can but in some instances it just is not good enough.
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Reply to Mary1934
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In late terms ALZ, patients often "forget" how to swallow. A speech therapist once told me there were 26 or some number like that different muscles we all use to coordinate our swallowing. ALZ patients lack the brain capacity to direct this.
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Reply to Karsten
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Dysphagia:
Difficulty swallowing foods or liquids, arising from the throat or esophagus, ranging from mild difficulty to complete and painful blockage.
Mom pockets her food too. They did an evaluation of and found she also has Dysphagia. Many have commented on "pocketing" so I need not go into that phase.
I've been caring for Mom for over 6 years now, this started about 2 years ago and progressively got worse. However, with patience, and small pieces of cookies on between bites, she eats her food. The sad part is that the care facilities do not have someone that can "sit for an hour" to feed one resident. In addition, if her mouth has food in it and they lay her down she may possibly aspirate. I suggest you google Dysphagia, Aspiration, and aspiration Pneumonia. "Patience for Patients IS KEY."
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Reply to Melimar
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My mom did/does this. I assumed it was a Parkinson’s thing. Poor jaw strength, poor tongue manipulation, poor swallowing. She does have some dementia. Very interesting questions and answers. Thank you!!!!
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Reply to Cmthatcher
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Yes. My father did the same as well, and would keep it there for nearly 15 minutes, as well as toothpaste, and pills. My father had late stage dementia...my father was as well on Hospice, but was home first, when it began. This is one of the signs of patients near death, that they will not want to eat anymore...my father went downhill fast.
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Reply to Chemoangel1967
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Cmthatcher Dec 14, 2018
Mom kept hers there for hours. 😢
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My mom with end-stage Alzheimer's does this, and even textured food including thick it will not stop it. My mom just spits out the food right in front of me. I do only give her soft food, and ironically she love popcorn. I give her a piece of pop corn she will swallow whatever is in her mouth without problems. It takes over an hour to feed her, and something as simple as feeding her produces a considerable amount of stress for me. If I do not do this right she will spit the food out in front of me and make a terrible mess. Alzheimer's is a very cruel disease not just for the victim but the caregiver.

Alzheimer's does not kill the person, but the complications of it will. Most die of either a fall or pneumonia. Feeding tubes are not a good idea with someone with end-stage Alzheimer's because they will tend to yank them out. They can still vomit and aspirate with tube feeding, and the tube insertion area can get infected.

One study showed 40% seemed bothered by the feeding tube to the point the patient had to be tied down or sedated to prevent them from pulling it out
see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3254052/

Another complication of tube feeding appears to be diarrhea..more likely from "dumping syndrome" and this can set off urinary tract infections.
https://www.managedhealthcareconnect.com/article/8614

Maybe when it comes down to letting them die vs. trying a tube as a last resort it still requires decision making by the family. I suppose in a nursing home you all will not have to see your loved one tied down or sedated because they are trying to pull it out, but it is a risk you have to take.
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Reply to cetude
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Yes, it’s called pocketing. It’s very common in later stages of dementia and Alzheimer’s.
At this stage a speech therapist is usually sent to evaluate and a modified barium swallow test to see if food is quite literally going down the right pipe or not is ordered. This is to ensure she’s not aspirating good into the lungs and recommend the proper food and fluid textures.
A change in diet texture to mechanical soft such as eggs and soft toast, to purée which is where food is given after puréed in a blender and even thickened liquids are given to help her swallow them efficiently.
As a long term care nurse for over 20 years, I can also recommend that a urinalysis is given and possibly a chest X-ray and lab work too. So if you haven’t called the Dr. yet do that. If she is ill especially with a urinary tract infection, this could be a very treatable indicator that an infection is taking place and will slowly resolve as it is treated. Even if no other symptom is present.
Sometimes even in the presence of an infection the set back has already continued to stage them further along and they do not regain the ability that was lost. The longer the set back goes on the more true this appears to be.
I would start there first with tests then get the speech therapist next or simultaneously.
The sweet taste is helpful to trigger the swallowing reflex as is the massaging as the first poster said. Definitely do these tips in the meantime.
A decision as to place a feeding tube or not is pretty common with end stages of dementia and Alzheimer’s as well. It is generally not recommended however, for many reasons, that I won’t go into here. But I will say this a huge decision not to be taken lightly or thought of as obvious. An educated decision and family feedback is warranted. Aspiration is generally just as big of a risk if not more with a tube feeding. I only mention this now as once the pocketing of food starts this decision is often not far behind.
Lets hope it’s a treatable infection and she recovers from this fully. All my best!
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Reply to Whataboutme
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My Mother does this occasionally and to help prevent it, I have her rinse her mouth with mouthwash after meals.  I tell her to "swish" it around and spit it out.  If you can do this with your mother, it really helps.  Also, give her smaller bites and when she's finished, have her drink something. I'm just sharing what works for us - you may want to seek advice from your physician.  Bless you for caring.
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Reply to dlpandjep
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What I would do with my Husband is I would encourage him to take a sip of juice, water any fluid after a few bites. I would also rub the outside of his cheeks to loosen up any food that had drifted into the area between his gums and cheeks.
I also used a swab after he ate to remove any debris that was there.
I did this for 2 reasons.
1. So the food would not stay there and become a problem as it broke down.
2. So he would not aspirate food particles.
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Reply to Grandma1954
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This is common enough to have a name - pocketing. It usually has to do with having difficulty chewing, manipulating the food in the mouth and swallowing; she should be evaluated by a speech and language pathologist who is trained to assess what is going on and to make recommendations to help her eat safely.
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