I'll try to keep this question as concise as possible:
Ever since my grandmother got pnuemonia over a year ago, she's had problems swallowing that are basically mental. Somewhere along the line, she's lost her mental ability to swallow. Yes, I have taken her to a doctor who specializes in swallowing and he confirmed that nothing was wrong. She takes two bites of food and spits it out into a napkin, doesn't matter what the food is.
Nutritionally, she's covered. She does drink a bottle or two of Ensure per day, plus some light snacks and water throughout the day. The doctor confirmed that she is physically healthy and her weight is good, so she's not missing anything there.
I realize this awful habit is par for the course of dementia and can't be changed. But it honestly grosses me out to the point where I lose my appetite and some days I even feel nauseas.
How can I possibly cope with this issue in a positive manner? I'm really frustrated (hangry???) and at the end of my rope with this. I just want to eat my dinner and keep it down before I have to go to my second job :(
11 Answers
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You raised the issue of all liquid diet. You might want to think twice about this, especially in terms of basic nutrition. GM still needs that mixture of proteins and other nutrients, so you'd have to plan a careful liquid diet to get everything.
Some suggestions:
1. Locate the dysphagia diets online, and notice the difference between the levels of dysphagia and the diets, mechanical soft vs. pureed. There are examples of liquids and pureed foods for each different level. The diets are thorough, and clear as to what's tolerated and what's not.
I received copies from speech pathologists, so you might try that route if you can't find the diets online. (I understand the issue isn't in the throat though.)
2. I'd be serious about not considering an all liquid diet. Mom needs a variety of nutrients, and you'd have to ensure that she gets them if you go all liquids. In addition, there are different levels of liquids. Locate some Thik-it or similar thickener in the grocery store; in mine they're found with the Ensure products.
The measurements sections address how much water/liquid and how much Thik-it should be used for each different level of dysphagia.
Make sure the liquids aren't too thin; this is where a speech pathologist needs to advise of the specific thickness.
3. Make harder foods softer - i.e., my father put applesauce on cookies so he could eat them. (He was dysphagic for more than a few years).
It's clear to me that GM is recognizing that some foods are inappropriate to eat. When she spits something out, you might want to keep track of that and either puree those particular foods or eliminate them.
Last night at dinner, Grandma was fairly lucid and we were trying to figure out what's going on with her whole spitting out food thing. (fyi- she has vascular dementia, still fairly high-functioning) and she tells me that she is taking too much food per bite, she has to learn to take smaller portions.
Okay, that makes sense. Sometimes I get a similar sensation if I accidentally take too big of a gulp of water (usually I'm at the gym or in a hurry if it happens).
So before I go all liquid diet on her, I'll give this one more shot. I'll gently remind her to take really small bites, chew thoroughly, etc.
Hopefully this works and helps. It's a bandaid really, because this won't last forever, but if it gives her a few more enjoyable meals, why not.
And again, I kindly thank you all from the bottom of my heart for the words of encouragement, support and advice. I truly appreciate it! God bless you all.
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Do read up on dysphagia - there are many levels of altered diets and almost no one needs to have their food completely liquefied. You should also be aware that sometimes thin fluids (even water!) can cause choking and aspiration in people with dysphagia and they may need to be thickened.
You all helped me realize the silver lining to this situation. She will sooner spit food out than risk choking on it. My grandmother is rather intuitive despite her vascular dementia condition, and if something seems even the slightest bit out of order, she won't go for it.
In fact, last night she said "I'm sorry but it was either I spit it out or choked on it. I'd rather spit it out." She's right- better safe than sorry. She's not doing it to be disgusting, she's doing it as a precaution which I am glad for that.
She's actually fairly proactive in her own care. So at least I have that much to be thankful for.
Thank you everyone, I do feel better about this.
Quite a few people suggested eating at different times and/or rooms. This has crossed my mind on occasion and I think I shall put it into practice. Going forward, I think it's probably for the best to have her on a mostly liquid diet. Though there be nothing wrong mechanically (a pathologist confirmed this fact), it is mental and par for the course of dementia and anxiety. She can feed herself, that is not a problem. For 93, she is physically in decent shape; it's the mind that's causing many of her problems. The liquid diet would be a safety precaution as well as making mealtime less of a problem. It's just easier overall.
We are working on getting a home health aide in, but that's a whole issue unto itself. You are all correct in telling me that the meals spent with Grandma are sadly over. You're right. "All good things come to an end". Meals with her were one of the fondest memories, they were always special. I guess I'll just have to accept the fact that it's over now and cherish the memories. Maybe that's why I was fighting this whole thing?
Anway, thank you everyone for the input. Love and luck to you all.
And this doctor - was s/he just looking at physical causes such as narrowed esophagus or is s/he a speech and language pathologist who specializes in the mechanics of swallowing - there's a big difference between the two.
Swallowing is a very complex mechanism, it sounds to me as though your grandmother is having difficulty initiating the swallow reflex, since she can drink she may need to have all her food blended to a smooth, more fluid consistency.
I think you need to alter your expectation that you can sit at the table with her and leave her to get on with eating her own meal, I spent many years spoon feeding my mother her pureed meals while my own food stayed on the stove to eat later.
Dinner time has become one more thing where the role you play within the family is caretaker and not granddaughter.
Although that’s sad for you, it’s just one of many changes that happens as the elders age. You have to develop a level of detachment. You could try different food textures to see if some worked better than others for her.
If it's caused by dementia, she might stop this after awhile and start some other activity. She might not. Do check out her teeth as JoAnn suggested. It’s strange but often they aren’t able to articulate what the problem is or even acknowledge it to you even if you figure it out.
I think I would pack my dinner, leave a little earlier and have dinner in a more pleasant space. You could still serve them and supervise before leaving but beg off eating yourself. I know most elders like sharing a meal. This may not work for your situation. You are basically running an ALF at home and it is all about the elders at this point.
Did the doctor offer her food that had to be chewed or did they just watch her swallow something liquid or soft?
When my mom had a swallow test it was more about the thickness of liquid to avoid aspiration pneumonia.
You might also try giving her chamomile tea before dinner to relax her and see if that helps.
“This too shall pass.”
I work in a Memory Care home and lots of family members come in daily to feed their loved one at meal times. Have you tried feeding her? If so, does she still spit out the food? Have you been able to hone in on what types of foods she does not spit out? Like sweet for instance? Seems like she is okay with drinks. Why not try giving her shakes made with protein powder and fresh fruits. Give her one of those for dinner before you try eating separately, and if it works, you've got your answer!! A high protein shake is a perfectly good meal replacement and it could turn out to be a win-win....here's hoping so!!
Is there someone with ur grands while ur gone. You know, u won't be able to care for them forever. Caring for one person is hard. For two, even more so. Where r their children.