Follow
Share

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.

Find Care & Housing
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.
Helpful Answer (11)
Reply to Fowlair
Report
NotMyFamily Feb 1, 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.
(0)
Report
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.
Helpful Answer (7)
Reply to AlvaDeer
Report

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.
Helpful Answer (7)
Reply to VickyC
Report

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. 💐
Helpful Answer (7)
Reply to Zdarov
Report
disgustedtoo Jan 31, 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
(0)
Report
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
Helpful Answer (6)
Reply to Daughterof1930
Report

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.
Helpful Answer (6)
Reply to Midkid58
Report
NotMyFamily Feb 1, 2021
Thanks for sharing
(0)
Report
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.
Helpful Answer (6)
Reply to Toomush
Report
Marysd Jan 31, 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.
(3)
Report
See 1 more reply
Your father is in denial.
Helpful Answer (5)
Reply to cetude
Report

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.
Helpful Answer (5)
Reply to wiseowl
Report

I posted recently about the same issue. My eyes have been opened today. Thanks to all.
Helpful Answer (4)
Reply to JustDaughter
Report

See All Answers
Ask a Question
Subscribe to
Our Newsletter