Problems chewing

JamieWattier

Hello everyone. I’m new here. I care for my grandma with dementia. She’s 97 (98 in April) and is in surprisingly good physical shape for her age, but her mind is going more and more. Recently while eating she forgets to chew her food before swallowing and it gets stuck. She ends up throwing up little bits at a time until she can finally clear it. I’ve been giving her softer foods such as easy scrambled eggs, mashed potatoes, bananas, etc… but if they’re too soft then she takes bigger bites and tries to swallow more at a time. She doesn’t do it with every bite, but it is happening more and more often.
Any ideas or suggestions?

Emily 123

Hi Jamie,

Medicare could pay for a PT/OT assessment, and they could provide her with some tools to help. Go ahead and make her provider aware, and they can order that. She may also need more assistance or closer watching during eating. Can you reduce the size of what her utensils can hold in the meantime?

JamieWattier

https://alzconnected.org/discussion/comment/194249#Comment_194249

Thanks Emily, 

I’m waiting on a call back from her doctor. She has trouble holding onto regular utensils, so right now we’re using the Bunmo brand adaptive utensils with bigger handles. But since they’re bigger they do hold a good amount of food. I can definitely look into a different brand maybe. 

I have also tried cutting her food into very small pieces so less chewing is required, and also separating the bites out on the plate for her. As of right now, I’m just making sure to sit with her and remind her with every single bite that she needs to chew it and it is working, but she gets pretty frustrated with me haha.

Emily 123

Believe me, I know the feeling! Lol!

DCCEPEK

When I realized my MIL was pocketing food in her jaws we went to soft foods that required less chewing primarily pureed foods. No meat mostly oatmeal with fruit applesauce banana. Blan foods help with bm duty too.

JamieWattier

https://alzconnected.org/discussion/comment/194271#Comment_194271

She doesn’t remember WHY I’m telling her to chew every bite, and she thinks I’m lying when I tell her she forgets to chew it sometimes. So it’s a whole thing lol. I’ve also got some ensure shakes that she loves. I’ll give her those on days when she’s really struggling with the food. But she can’t live off of those when this progresses more and more haha.

JamieWattier

https://alzconnected.org/discussion/comment/194272#Comment_194272

I’ve just recently started looking into soft foods (it’s only been a few weeks since her first issue with chewing and it happened so randomly until a few days ago when it was more and more). She has never liked oatmeal or grits. Has flat out refused to eat them for as long as I can remember. Tried to make her oatmeal the other day thinking maybe with the dementia she’d give it a try. I finally got her to take one bite but she spit it right back out. She does love fruit of any kind. And of course anything sweet. Which is why ensure protein shakes have been a blessing whether it’s with this issue, or her lack of appetite sometimes, or when I just need to get a few more calories in her for the day.. she’ll drink them every time. She also often asks for cake/cookies/pudding. BIG sweet tooth. But sweets won’t get her all the nutrients she needs.

Emily 123

Well. I took Mom a nice bowl of real oatmeal with raisins, brown sugar and whole fat milk, and what did the woman who fed her children oatmeal everyday in the winter before sending them out to walk to school say?

'Yuck!'

🙄

Thanks, Mom! So much for trying old familiar foods...

JamieWattier

https://alzconnected.org/discussion/comment/194282#Comment_194282

Haha! My grandma helped raise me and my siblings (there are 6 of us) and when I left my job a few years ago to care for her, it was a struggle to find foods that she liked anymore. I would use her own recipes that she’d made and written down over the years in different family cook books, but most of them she didn’t want anything to do with.

BassetHoundAnn

https://alzconnected.org/discussion/comment/194283#Comment_194283

Your grandma may have been like a lot of good family cooks. She spent most of her time cooking foods that others' liked, and perfecting the recipes to their tastes, but spent little time cooking things that she liked. Hence her indifference to meals made from all those old recipes.

My mom is also 97 going on 98 and her chewing has become an increasing problem within the last year. I think the brain forgets the sequence of chewing and swallowing. Sometimes she'll keep chewing and chewing and chewing and never swallow; tickling her throat like a baby's throat works. Sometimes she'll chipmunk food in her cheeks. Sometimes she won't know what to do with the food once it's in her mouth.

The best strategy has been pureed food. She doesn't choke on it. She seems to be able to swallow it.

Since she prefers sweets over anything else, as a lot of people with dementia do, we give her pudding, ice-cream, cheesecake. She likes chocolate Ensure. But she likes pureed mac & cheese too. Sometimes she'll eat pureed veggie soups, which are good for her.

She loves sweet potato and pumpkin pie, which have lots of good nutritional things in them.

She spits out oatmeal too!

You just have to experiment. And keep in mind that her chewing and swallowing patterns will change over time. Good luck!

BassetHoundAnn

Another thing you might consider: Carnation Instant Breakfasts. They're nutritionally as good or better than Ensure, provide more calories when mixed with milk, and much cheaper.

M1

At a younger age you might consider a formal video swallowing study by a speech pathologist. I'm not sure it's worth pursuing at her extremely advanced age, but i would be prepared for inability to swallow and aspiration pneumonia to possibly be her final illness. Have you considered a hospice evaluation?

JamieWattier

https://alzconnected.org/discussion/comment/194363#Comment_194363

She seems to be swallowing fine, the problem comes when she takes a big bite and just doesn’t chew it.

JamieWattier

https://alzconnected.org/discussion/comment/194328#Comment_194328

Thanks! She DEFINITELY loves any kind of sweets haha! I hate to have to switch her to puréed food now since I just recently got her to eat enough to gain a little bit of her weight back (in a healthy way). She went through most of last year with “no appetite” or just feeling “full” after a couple of bites. Turns out her taste had just changed again but she had been losing weight. But once I found some different food options she liked (including things she didn’t used to enjoy like hotdogs, banana sandwiches, etc..) she started slowly gaining it back. I’m worried that will go away again if she’s on purely puréed food.

BassetHoundAnn

She might surprise you with what she likes of pureed food. My mom certainly has surprised me. One night she was eating pureed kielbasa. I thought yuck, but she loved it. I make lots of cheesecake for her because she loves it, it's soft, and it's very high calorie.

Potatoes are nutritional powerhouses, especially sweet potatoes. Mashed potatoes are always good, and you can add things to them, including butter and cream, but also finely minced vegetables like chives and onions. (Lots of people who were raised during the Depression like our LOs love onions because they were used to flavor everything back then, being the only affordable flavoring option.)

Often my mom insists she's not hungry and doesn't want to eat, but if you sit her down in front of a plate of food and sit next to her, she starts eating.

It sounds like you're doing really well experimenting. Your grandma is lucky to have you caring for her!

ButterflyWings

I have to puree everything now - and thankfully my DH will eat whatever combo comes out of the blender. I make a small plate of whatever I am eating, and then just puree it to a consistency between baby food and drinkable. He can't pocket it and doesn't have to chew for 3 hours trying to figure out what to do next.

There was some choking and aspiration after he first started pocketing food and would keep spooning in more and more before even swallowing. So, I realized that is another definition of "can't self-feed anymore". This change to blend all foods before feeding him is helping with those recent problems (signs of stage 7 progression) but of course it still shows his decline. He has lost some weight in the last 6-8 weeks which started just before his hospice nurse advised to start pureeing. I know this trajectory is inevitable but it is so tough.

harshedbuzz

https://alzconnected.org/discussion/comment/194367#Comment_194367

Hi and welcome.

I beg to differ. What you are describing is ominous-- dire even. It's an emergency.

Aspiration can develop quickly and go unnoticed. PWD can aspirate food, liquids, regurgitated stomach contents and even their own saliva. The pneumonia that develops can be fatal. It's how my dad died. At 2pm he was happily flirting with an SLP during a feeding evaluation which included the Chik-Fil-A I'd brought him. After I spoke with the DON to discuss the hospice evaluation scheduled for the next day and the X-rays/bloodwork that was done earlier that day. Dad died later that night around 10pm. I was grateful that he didn't appear to suffer, but the speed with which this all happened left my mom and uncle unprepared for the outcome.

Many people describe the progression of dementia as regressing to infancy and in some respects, IADL and ADLs do seem to disappear in the reverse order in which they were acquired as a much younger person-- LIFO, if you will. Chewing is fairly basic skill learned in the first year of life. If you haven't brought in hospice, you should consider an evaluation.

That your DGM is struggling with needing a prompt to chew indicates that you can no longer consider her to be independent in this critical ADL (self-feeding) It's also very likely that she will soon have issues with swallowing if she isn't having silent aspiration of which you are not aware already. The vomiting/regurgitation of food is a risk for aspiration as well.

I am glad you have reached out to her doctor. I would ask for a feeding consult from a SLP, not so much for a real-time swallow study but for a feeding evaluation which will give the SLP an idea of who your LO can be safely fed which s/he can share with you. While people here can offer you some of what worked for them, I have seen some "advice" given her by well-meaning members that was a direct 180 degrees from what dad's SLP said was best for him. It sounds like might need hand-feeding for most foods.

I can appreciate your concerns about maintaining weight. It's difficult as most PWD will lose weight in the later stages even if they're being fed well with high calorie treats included daily. The brain is in charge. With disease progression, the damaged brain will no longer prompt the digestive system to work efficiently so that even if you can get a healthy diet into a PWD in the late stages, the body might not make real use of it. Sometimes dad's meals exited looking more or less unchanged.

HB

Phoenix1966

Echoing @harshedbuzz , my 95-year-old grandmother passed huge amounts of fecal matter in the late stages of the disease. Her eating didn’t slow down until almost the last 4 weeks of her life, but she lost so much weight prior to that despite consuming more than enough calories to gain weight because her body was slowly shutting down and no longer processing the food she was eating.

housefinch

I would also be concerned this is end-stage behavior. She could aspirate her saliva or food anytime and that would be it. I would definitely prepare myself mentally for her death sooner rather than later. I’m really sorry for being blunt. I would definitely let the doctor know and ask their opinion but that’s my immediate thought hearing this. I would also be sure any family members involved are aware this is happening and things could change in hours. They may not be aware. Sending you strength.