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Your father is in denial.
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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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Marysd Jan 2021
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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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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disgustedtoo Jan 2021
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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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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cwillie Jan 2021
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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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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NotMyFamily Feb 2021
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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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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NotMyFamily Feb 2021
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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I posted recently about the same issue. My eyes have been opened today. Thanks to all.
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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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NotMyFamily Feb 2021
Thanks for sharing
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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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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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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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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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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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Myonlysunshine Jan 2021
wonderful tips, thank you!
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