Mom not swallowing food. What should we do?

Aassuming she will "eventually" swallow chunky food is both wrong and dangerous. If he's resistant to getting that message from you and the caregiver, ask the doctor to have a serious talk with him about how important it is to address it.

My mom is 87, hospice patient with dementia. She also pauses—the brain forgets what to do with the food. I brought a little Cuisinart chopper and chop everything in tiny pieces. Sometimes it takes a few minutes before her brain kicks back in. Stop feeding her until she either starts chewing again or remove the food from her mouth immediately, as she can choke. My heart goes out to you and your family. This is so hard to watch.

Hello BlueEcho, so sorry about your mom. Sending my thoughts and prayers to you.

"Pocketing" is the name used by nurses when the elderly hold food in their cheeks. My mom had the same problem. I gave her yogurt, sour cream, ice cream, and scrambled eggs. The last few weeks of her life when she stopped swallowing, I gave her spoonfuls of water and chipped ice. She had Alzheimer's and was on and off hospice the last 5 years of her life. She passed away on January 4th of this year. She was 91 going on 92.

My Dad had Parkinson’s and Lewy Body Dementia. Swallowing is a real issue with Parkinson’s. He was about the mid stage of Parkinson’s, having a lot of trouble swallowing. His doctor said he would fail the test, so there was no sense putting him through it.

We just made some adjustments to his meal. Cut meal into tiny tiny bites, used gravy a lot, lots of jello, ice cream, pudding, Ensure milkshakes, etc.

His Doctor said to remember that Any Calorie Is A Good Calorie once they start having trouble swallowing. If desserts go down easier, then desserts it is. Weight loss is very detrimental.

Posted earlier on subject but was unable to add. Another reputable company for pureed food.
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First of al I would encourage your dad to talk with her primary doctor. Your mother is on Hospice but I think this would be a necessary test to keep your mom safe. Swallow evaluation is really not too much to go through in my opinion. My 98 year old mother did very well during the test and took about 1/2 hour. The patient will eat different textures of food and the pathologist will show you on the screen where the food is heading. We watched it and was shocked to see food going almost into my moms lungs. We met with a speech therapist and dietician shortly after the evaluation and both were extremely helpful. I would definately advice both you and your dad to speak to her primary and do this asap. Your mother is at high risk for aspiration pneumonia, choking and death. There is a lot to keeping her safe. Correct positioning while eating, correct consistency of pureed foods and liquids. Checking her mouth to be sure food is swallowed and not hanging around, using mouthwash after each meal to keep bacteria from forming. Swallowing twice after each bite. Yes necessary to have a consult. Sorry for being so blunt but it really is a scary situation for caregiver if they do not know what to do and find themselves in a desperate situation with a choking episode. I hired a personal chef at the very beginning and it was helpful. There are companies who home deliver pureed foods, meals on wheels less expensive and sometimes free depending on insurance. I wish your mother the best and hope your dad becomes educated and cooperative for the best interest of your mom.

There is a company called Mom's Meals that helps with meals for the elders. When my mom first started getting meals she was doing the same thing so I called and asked if they could change her meals to pureed food and they did now I don't have that trouble with her not swollen her food anymore
Here is the number to the company 1-866-204-6111

’m so sorry but her dementia has progressed considerably you may need to have hospice begin oral morphine. do not forget the ativan... please...

I added a portion to this post that I had pasted and re=posted. Yes, it is important..

blend the foods... make sure she can swallow.... that is why swallow test is important... they will instruct you..

my lo had a test after a stroke...... it was all for safety.......

If you decide on a feeding tube, note it can have complications, but I had my mom on one and she did wonderful with it--*BUT* it was a *LOT* of work to prevent infection and keeping the tube clean and patent. You have to really know what you are doing...and oral care is vital even with tube feedings. IF you go that route, make sure it is a LAST RESORT only. You need a *LOT* of teaching and it MUST be cared for constantly.

Hospice will never tell you how to do this, but I learned myself. Here it goes.

(1) You will have to REVOKE hospice. All that takes is signing a piece of paper.
(2) Once you revoked hospice, her mom's regular Medicare will pay for the hospitalization and tube feed placement. The surgery is fast only takes a few minutes (the paper work takes more time)--once they make sure she tolerates the tube feeding, she's back home.
(3) REINSTATE HOSPICE. Very simple to do. Choose which hospice you want and sign the paper. YOU DO NOT need a doctor's order because once on hospice, that's that. Reinstate hospice prior to leaving the hospital -- a social worker will organize all of that. Transport will be paid for by hospice, and they give you all of those supplies for free including tube feedings, feeding pump, tubings, diapers, and so on and keep her on a strict bowel schedule.
Doing it this way makes the feeding tube PRE-EXISTING so they will pay for the supplies!

I did not use that abdominal binder. I went on amazon and bought some "tube tops" that concealed the feeding tube. These tube tops were very comfortable for mum. Mom never bothered with the tube, but when I turned her to clean her, this prevented the tube from being yanked by the covers.

I put mom on tube feedings because death by dehydration can take two weeks or longer. Mom never had a problem with her tube feedings; in fact, she got healthier. However, mom was also insulin-dependent diabetic and decades of that gave her kidney and liver disease--she did not die of Alzheimer's disease but kidney and liver issues. Hey she lived to be 90..I'm completely satisfied with that, and mum died at home surrounded by love. Not once did hospice ever have to give her any narcotics or psychotropics. Mom's death was the most painfree and peaceful imaginable--and at home. Mum was on hospice a total of 2 years.

And hospice as I looked at other responses... is to keep mom comfortable.

If you can bring her favorite foods deserts. treats. or meats, veggies, etc... in a form she can swallow,,, that would be great.. You may need to bring it in soup form or soft food... it is ok if she accepts and likes it.... THAT IS ALL THAT MATTERS.

When hospice is on board.. it is to keep patient comfortable to the max...
Please understand that this time NOW... is her new BASE LINE... This base line is the where her new life line begins... from this point... so please love and give her the most fun you can...and the most enjoyable food she wants to salivate. It is okay :)

YUP;...... SWALLOWING TEST.......

this will give your family a true test of her swallowing capabilities.

HOnestly,.... the home she is in, can make her anything tasty in the form of a splendid blend of soup, and anything she can swallow without choking to death.
The foods they make my LO smells good and tastes good too. ;)
Yes, you may taste the food.. It is the same without the "choking hazards" :)
A step up from baby food.
If she likes yogurt,,, (kifir) no worries, mom will not starve to death... just blend it so she can swallow.... It Is Ok...

GEt a nurse or doctor in to give her the SWALLOW TEST .... It does help

Edit: You require the INTERVENTION of your mother's physician.

This was a reply I made to another comment, but reposting it so it doesn't get lost in the shuffle!

Since your mother is already on hospice, I wouldn't recommend the speech pathologist or swallow testing. Sure, it can help show dad, but that's a lot to put mom through. You already know she has difficulty swallowing. The test person can make recommendations, but so can a decent hospice nurse. Sounds like you already know there should be transition to pureed or semi-pureed foods, but need help with convincing dad.

You said the hospice nurse has tried to explain to dad. Well, I would have that hospice nurse explain it every time s/he is there!

Getting information online (hopefully a brief description will be enough, as if it's too lengthy, he may choose not to read it) or even better a video demonstration you can show to him might help.

Give props to the caretaker. Make sure the person isn't feeling pressured by dad - if she's feeding mom, keep dad occupied and out of her hair!

Found videos on YouTube that shows both normal and aspiration swallowing images (note the first, normal swallow, is only has about 40 seconds of video, not 1 1/2 min, but it's enough. The second, aspiration, is closer to 1 min, not 8 min (the rest of both is just black screen!) Not sure how much seeing these will help him, but here they are:

https://dysphagiadiagnostex.com/pages/mbss-video-examples

Also, Marysd suggested "Maybe tell your dad you want to try it on a trial basis and see how she does with it." If you can get him to read the information you find AND demonstrate that mom does better on the pureed foods, perhaps he will come around. Seeing is believing...

Hoping for the best for you (and ignore Rusty2166)

Maybe tell dad that there is a possibility of her choking on the regular food. Tell him the pureed food would be safer and prevent an emergency situation. I'm sure that's why sitter is taking it out of her mouth. Of course, it could be mom does better with dad. If he is still hesitant about changing foods, ask him if he can feed mom all of her meals so sitter is not blamed if mom does choke one of these days.

Imho, you require the invention of your mother's physician. Prayers sent.

Please ask her doctor for a referral for a swallowing evaluation. This test is performed by a physical therapist that specializes in swallowing and eating difficulties. He/She will evaluate your mom's ability to chew, bite and swallow foods of a variety of textures and thicknesses. He/She will also let you know what is the best type of diet and/or food thickness/texture for your mother. She/He can also recommend food products and dining aids to help with feeding/eating.

Hello I am so sorry to hear your struggles. If your mom is not able to swallow or not swallowing you may want to think about a feeding tube. However I don’t think that’s an option if she’s on hospice. Your mom can’t go on without food. I don’t know how much she is actually eating if she’s not swallowing and this is a concern, you don’t want her starving herself either. You need to have a serious discussion with your dad because if he doesn’t try the purée food first, she may be suffering if she’s not getting adequate amounts of food. There’s a chance she won’t swallow the purée either, and if she doesn’t, I’m so sorry but her dementia has progressed considerably you may need to have hospice begin oral morphine. Remember your goal is to make her comfortable and pain free. I’m saying this to you with deep compassion and sincerity as I wish the doctors would have told me certain things to look for before my gramma had to endure suffering for 4 days before she passed. God bless and much love to you and your family.

First of all, you get immediate help from your doctor to talk to your father. Second of all, it is time that YOU wore the pants in the house when it comes to this situation and make it very plain you will NOT allow danger to your mother and if he persists in fighting to get his way, you will report him and have her placed somewhere. It might take legal or professional intervention but he can no longer be the one who dictates. He has to be stopped now no matter how or what you have to do. Her life is in danger. He is a monster.

My mom was doing the same thing or she would spit it out. She gets meals for a place called Mom's meals I called and asked them to change her meals to pureed and they did now she doesn't do that anymore. So maybe you might try that and see if that helps.

I definitely would recommend a swallow study as we went through this with my Dad. The pureed meals helped (see the Mom's meals recommendation in one of the posts below) and also be very careful with liquids. My Dad's liquids had to be thickened as they went down too fast for him and also created a danger.

This is called "pocketing" food and is usually a sign of late stage dementia. Individuals with dementia can forget how to swallow or loose the ability all together. It would be helpful if your father could get some education about the disease process so he could understand and accept the changes that she is experiencing. Not only would it make it easier for all the family members and the caregiver, but it would give him the opportunity to share what little quality time she has left. You mention "hospice nurse" so I'm assuming she is already on hospice. Hospice providers are trained in end of life care as well as how to deal with and educate family members so perhaps your father can be approached by the company's social worker or religious person for a better understanding if he won't listen to the nurse.

I'm concerned that your father feeds her and "quits leaving food in her mouth." I suspect his frustration stems from thinking she is just being stubborn. Yes, she definitely may choke but additionally that means she isn't getting the nutrition and liquid she needs. Every effort should be made to keep your mother hydrated as well as serving foods that have a liquid content and/or are easy to swallow. Since he won't allow puree try slippery canned fruits, yogurt, jello, pudding, Ensure, mashed potatoes with gravy, smash the cooked vegetables before giving them to her, etc. She should be reminded to chew and swallow after each bite. This can be done verbally as well as demonstrating with exaggerated chewing and stroking the neck.

You didn't mention if she is bedridden or eats at the table so she may be past this point but try reducing mealtime stress and make it more enjoyable with a cheerful attitude, comments about how good it smells, music, conversation in between bites etc. If they eat together involve both of them in the conversation.

The fact that your father feeds her when the nurse isn't there makes me wonder how often there is outside help and what other personal care your father has to provide such as toileting, showering, etc. It may be too much for him to handle both mentally and physically. I hope you and your father will work with her doctor and/or home/health/hospice agency for guidance. After a lifetime together, he deserves to love and share her final time as her husband instead of a stressed caregiver. You both deserve to help her cross over in peace knowing you have done the best you could.

Good luck

I am so sorry to hear this. It might help if someone in a place of authority, like the doctor, explain how dangerous this is for her.

Choking became the reason why I had to take a step back. Choking was never life threatening but would cause an hour of discomfort and mucus production. My Aunt can chew but often focuses on the next bite and fails to swallow the current bite of food. Very common. I now feed her...yes it takes longer to feed her but I multitask and only give her one bite and then walk away or read my book. She salivates more and focuses on chewing and swallowing this way. I recommend the following product to assist with quickly making meals acceptable ZYLISS EASY PULL FOOD PROCESSOR which has a hand pull, no electricity and can actually be brought to restaurants. This device changed my life. I pull only until chopped enough to eat and not pureed like baby. I also recommend sandwiches still with healthy breads that you moisten the bread and crust with water and then wrap in a paper towel for feeding. Tuna, Egg Salad and PB& Jelly or Banana are great healthy sandwiches. I have started buying fresh vegetables and cooking and using the ZYLISS to chop and then freeze in labeled containers on one day a week gives me foods to get quickly. I make pudding and chop fruits as well, freezing these. It does change the texture but I find a few hours once a week gives me a freezer of things to choose from. Consider seeing whether your parents qualify for MEALS ON WHEELS which also helps me. They are small meals but balanced and in a hurry, I can ZYLISS the meal and add an extra vegetable from the freezer for fiber and vitamins. Choking is not worth it and digestion of food is also important so anyone with dementia or Parkinsons risks swallowing food not properly chewed for absorption.

Yes, please get a speech pathologist involved along with the hospice nurse (ideally at the same time). The hospice nurse should explain the dangers of not being able to swallow properly and the dangers of aspiration pneumonia. Plus she should be able to explain what happens when your Mom will no longer be able to swallow. Please discuss this NOW. You don't want to be making a knee jerk decision to put in a feeding tube (which I HIGHLY discourage). Unfortunately, denial is in play here for Dad and he wants to do everything he can to keep Mom alive. But at what cost? Once a feeding tube is inserted, it's difficult to come to the realization (after this invasive surgery) that it was not a good decision and then it's even MORE heart wrenching to remove it. I pray that you can convince your Dad to help your Mom make her final journey in peace.

My 76 year old husband was diagnosed with Parkinson's in 1999. He now has dementia (thankfully not LBD) and is clinically blind. Needless to write, meal times are challenging (frustrating for all) and long. It was helpful for us to go to a (good) speech therapist that also specializes in swallowing. She evaluated him, suggested a swallowing test - which the neurologist immediately approved and Medicare paid for, and one day - we took a lunch in to the appointment and she watched how he ate. She was able to make suggestions for both of us - to help him - eat, chew and swallow. Also, I've tried to discern which foods are easier for him to chew and which foods are more difficult and try to eliminate them from his meals. One quick helpful answer - when food gets pocketed, I take a spoon and put water on it and place it up to his mouth. For some reason, this action helps to trigger a swallowing response - better than a glass of water or straw up to his lips.

Maybe your father would consider feeding her this? They puree the food but then arrange it back into 'normal' food presentations.

https://my.momsmeals.com/members/Order.aspx?af=pureed

I agree that he doesn't want to admit she is leaving.

Pureeing the the solution. She is having a hard time swallowing.

We had this with my mother who had Lewy Bodies. It causes loads of stress and she did loose weight. We relied more on the nutritionally enriched drinks in the end. She would only eat/swallow on some days.
It is really hard to deal with.