Mom not swallowing food. What should we do?

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Mom not swallowing food. What should we do?

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My mom has Dementia and Parkinson's and has started holding food in her mouth and not swallowing. Her caretaker feeds her, but eventually has to pull food out of mom's mouth. When dad feeds mom, if she holds food, he just quits feeding her and he says she "eventually" will swallow. I have discussed this with my mom's hospice nurse and she has told my dad and I that we need to start pureeing her food. Dad unfortunately is not wanting to do that yet, he says she will eventually swallow. I am afraid of my mom choking on her food, I am stuck between a rock and a hard place. My dad is still very much "in charge" when it comes to making decisions for my mom and is starting to create tension between he and the sitter, even to the point where she has mentioned leaving, which in my mind, is NOT an option.

Alzheimer's & Dementia Care Decisions Diet & Nutrition

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I'm sorry. I'm sure you must have read all about pocketing food and dysphagia and already know that a pureed diet is the only thing that will help. My mom had a table mate at the nursing home whose family insisted on a regular diet and I (and staff) watched her inability to eat at every meal.
My only suggestion would be to try to arrange meals that include things that are already more or less the proper texture - oatmeal and cream of wheat for breakfast, soups for lunch (these may need to be thickened but the caregiver can do that at the table), mashed potatoes and well done veggies that can be fork mashed for dinner. Lots of custards, yogourt, puddings. Smoothies for snacks. And supplements like boost and ensure can help keep up the calorie intake.
Unfortunately at some point even that will be more than your mom can handle and she may aspirate anyway, you mention hospice so that time may be already here 🤗

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wonderful tips, thank you!

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Difficulty with swallowing food is fairly common with Parkinson's dementia. Swallowing is a complicated process involving several muscles. Food going down the wrong pipe can result in Aspiration pneumonia. You cannot assume she will eventually swallow the food. She may feel that her throat is blocked and cannot swallow. Ask the hospice nurse to get a speech therapist (pathologist) involved. They are trained in swallowing issues.

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Your father is being both cruel and a danger to your mother. That may not be his intention but it’s still true. My dad’s hospice nurse could be very direct and adamant and this is what your mom needs now, someone to advocate for her to no longer receive solid foods. The puréed foods will last a limited time before also becoming too much to handle, so be prepared when this time comes. I hope the solids don’t continue another day, too much risk for watching her choke to death or get aspiration pneumonia, both avoidable and cruel to a helpless person

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Someone needs to explain to your dad--hospice nurse would be best at this--that continuing to feed mom solids at this point would almost surely result in aspiration pneumonia. There may soon come the point where nutrition by mouth will be impossible, and I say this as a retired RN. Do let Dad know that denial and an insistence on feeding solids now may result in the death of his wife from either choking or pneumonia when the food gets sucked into, or goes down the "tubes to the lungs and not the stomach." Show him an anatomy picture to make clear how this happens; sometimes pictures work well for elders. The sitter would be wise to refuse to feed Mom now without a swallow evaluation. So sorry you are experiencing this trauma. I know that your Dad will be terribly traumatized if his wife chokes on food he is forcing, or if she dies of pneumonia.

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There's no other choice here but to start pureeing her food. You have to make your dad understand this, it's too much of a danger for your mom not to. My dad always made all the decisions for my mom also and there were so many of his choices we didn't agree with but we learned to "choose" our battles with him. But this is a battle I believe worth choosing!
My mom started pocketing her food in her cheeks and dad would have to pull the food out of her mouth also. Once she started to continuously do this, dad started pureeing her food so she wouldn't have to chew for so long and wouldn't hold it in her cheeks. He hated that she couldn't eat solid foods but he was more afraid of her choking or getting pneumonia that it didn't take much to convince him to do this. Google information on what could happen to your mom and read it to him. Sometimes this scares them into doing the right thing.

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By the time daddy was at this stage with Parkinson's, he HAD experienced a couple of choking episodes and that was enough to make him refuse to 'chew' anything.

Mother made the transition to soft foods and a bottle of Ensure and he was a lot less anxious. Choking and not having the ability to 'cough up' what's stuck is horrible and scary.

Honestly, as much as dad enjoyed a good meal, I don't recall him ever complaining about the diet change.

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Thanks for sharing

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I posted recently about the same issue. My eyes have been opened today. Thanks to all.

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NotMyFamily, in addition to providing your father with information on dysphagia, choking, aspiration and aspiration pneumonia, you could find information on video swallow tests which reveal whether or not an individual is swallowing or aspirating food. I've watched at least 2 being done when my father became dysphagic; it's a bit hard to follow, but the speech pathologist explained what was happening when food was being aspirated.

Is there a speech pathologist involved who could somewhat more forcefully advise your father that his actions are potentially causing harm to your mother?

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Thanks for sharing. I am leaning more heavily on the hospice nurse for more direct ways to talk to dad about these things, instead of it coming from me all the time, after all, I am just the daughter!

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Your father seems to think this is a choice that your mother is making, to not swallow solid food, and that this is a contest of wills. It may be that she is unable to swallow solid food, or not easily. Perhaps a conversation with him regarding why he is so adamant about not pureeing her food would help. Does it represent one more thing that documents her decline? Does he think she is just being stubborn or obstructive? You have plenty of advice from others about the medical reasons for pureed food. I am wondering what his objection is.

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Thanks for sharing, one of dad's main things is that he wants mom to be able to do things as long as she can on her own. Sometimes my mom will be able to pick up small items to eat, but other times, she can't get the spoon to her mouth, and I won't sit by and watch her struggle. a lot of times in the past dad has thought of things like this as being stubborn on mom's part, however, I do feel he is starting to understand more of what the "disease" does, not what he thinks mom "chooses" to do.

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My 96 yr old Dad started the same thing about not swallowing but he would want to spit it out.

I just keep having to remind him to chew and swallow and have milk or juice for him to drink to help.

It takes him about an hour to eat.

Also, he doesn't eat food you have to chew alot like meat, ect.

He does better with softer food like oatmeal, applesauce, yogurt, eggs, pancakes, soups, muffins, mashed potatoes, sift beans and cornbread, ect.

For his meat I buy Vienna sauges.

Also, he loves ice cream.

I noticed his problems are when he has food that requires a lot of chewing before swallowing, I think he just forgets that he's suppose to swallow and thinks he will choke.

At 96 chewing can be tiresome.

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It's call dysphagia Bev and it's not that he forgets to swallow, the muscle coordination required is complicated and can be lost in advanced disease. If you are unwilling to have him evaluated by a speech and language pathologist then at least please read as much as you can about dysphagia and safe diets and fluids, if not he will choke and he will aspirate.

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Yes, a speech pathologist is supposed to get involved!
Since there is so much good info here already, I tend to expand on what daughterof said: your dad is apparently having his own age-related decline, and perhaps you can gently say this one time to him, timed just right. It will make him sad and embarrassed, which I know you don’t want, but may help make some progress. That only someone in a more feeble mental state would cross what educated and experienced nurses are saying. He is under terrible stress, and/but you might need to use a chink in his armor.
Try to make a more special connection with the caregiver, that this is when you need her most, maybe even increase the pay a small bit?
God bless you both, and your mom. 💐

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Since her 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. The person can make recommendations, but so can a decent hospice nurse. OP has said the 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 one youtube that shows both normal and aspiration (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!)

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

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Good time for hospice. They'll bring in a speech pathologist. It may be cruel to say, but quality of life issues are just that. No matter our love, we just have to prepare for the process of letting go. This form of debilitation is a relatively new one, associated with the advanced ages we have been allowed by better life. It's clear your dad is wrestling with that, and perhaps his own decline. Sympathy for them needs to be balanced with the need to make rational, kind decisions. If he will not allow this, you have to make a decision whether to bring in experts on your own, or allow him to aid in the demise of his wife, which will surely pain him more.

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My mom had this exact problem with Parkinson’s and dementia and the inability to swallow anymore. Luckily when we reached that stage we had already had her on hospice. I can not emphasize how much better all of our lives were once my mom was put on hospice and they could come in and be the expert and make these decisions for us and it was not us kids arguing with my dad to give our mom puréed food. My mom did get used to eating the puréed food and my dad accepted it as well. He could see she coughed a lot less when fed the puréed food than when she was fed the non puréed food. Maybe tell your dad you want to try it on a trial basis and see how she does with it. Best wishes as I know this is a very difficult stage in the process with Parkinson’s.

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Your father is in denial.

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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.

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

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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.

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Thank you for sharing

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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.

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Thank you so much for sharing

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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.

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Thanks for sharing

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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.

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Thank you for sharing

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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.

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Thank you for sharing

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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

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Thank you so much for sharing! Yes, mom has hospice services, but only for comfort care, not end of life. Hospice nurse comes in once a week for vitals, med checks, etc., on the weekends we have CNA's that come and help bathe and get mom dressed and out of bed. We have a sitter that is an angel sent from God. She works M-F, 10-4 and she does so much for mom, I could not ask, nor would I find any better. Mom is wheelchair bound during the day, but she does eat all of her meals at the table, sitter makes sure that she does not just lay in bed all day. We are truly blessed in so many ways, yet, as each new faze of this horrible disease creeps in and shows its ugly head, well, sometimes we just feel defeated once again. Thanks again for sharing with me.

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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.

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Thanks for sharing

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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.

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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.

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Bad advice Herr Not-Doctor. Why is it every situation has to revolve around DEMANDING what you think is right? WHY make more contention than is necessary? Is this how you do your work? Threaten people to shape up or get shipped out? I would HATE working for you!

AND her dad IS NOT a monster. If anyone is, you are.

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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.

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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.

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

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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.

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Thanks for sharing

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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)

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Thank you for the info!

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

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