A question about swallowing difficulty

Palmetto Peg · September 6

My DH is in about mid-stage 6 of mixed dementia. He is having trouble swallowing, and the difficulty keeps increasing. His diet is soft food cut up very small. He needs to be coached to swallow pretty much every bite, and sometimes has to try two or three times to get the food down. He is hand fed small bites with frequent sips of liquid, but it is clear that it is getting harder and harder for him. He chokes and vomits on occasion, even with supervised 1:1 feeding. He still enjoys food and expresses hunger - so what happens when he just can't swallow any more? We both agreed there would be no feeding tubes, and I will honor that wish. He is losing weight gradually, and the MC where he lives has added thickened Ensure, which he can still swallow. Should we go to totally pureed food at this point? Thank you in advance for any insight you can give me!!

White Crane · September 6

puréed foods might be the best at this point. You could also ask for him to have a swallowing evaluation.

harshedbuzz · September 6

@Palmetto Peg

I'm sorry you're at this place now.

Is your DH self-feeding or is he hand fed? Normally the need to prompt swallowing is a stage 7 symptom per the SLP who evaluated dad. The DBAT isn't as clear on this as some other behaviors. At the time dad was very verbal and still walking, so it came as something of a shock to me. An SLP swallowing evaluation might bring some ideas.

We discussed quality of life vs safety. She shared that dad was more likely to aspirate on liquids or saliva than food. She said thickening of liquids and pureeing of solids often lead to failure to thrive because the PWD isn't enjoying them and is reluctant to bring in enough calories. We decided not to process his foods or thicken his liquids but we put safe feeding measures in place— no straws, sports bottles, eating only upright and no mixed textures like chunky soups or cereal with milk.

In the end it didn't matter. Dad died from aspiration pneumonia a few hours later; an Xray was taken earlier in the day. He died peacefully in his sleep after scarfing down some Chik-Fil-A nuggets and fries washed down with a milk shake which he enjoyed. I don't know that being more proactive earlier would have made a difference except to suck what little pleasure he had in life away.

YMMV.
HB

Palmetto Peg · September 6

Thanks for your input. He did have a swallowing evaluation a while ago, and that is when the thickened liquids and soft food diet was put in place. He is wheelchair-bound and had a minor stroke a few months ago that affected his ability to feed himself. I feed him dinner, and have paid aides who feed him his breakfast and lunch. He does still say a few words and doesn't have all of the behaviors of stage 7. He doesn't seem to mind the texture of the food or the thickness of the liquids and, for the most part, eats pretty well. I'm just worried about what would happen if he absolutely couldn't swallow, but still wanted to eat. I guess I will cross that bridge when I come to it. I honestly wish he would die peacefully in his sleep - this is slow torture I think for both of us!

Chris20cm · September 6

DW had dysphagia episodes and felt like she was choking, but Dr. prescribed Pantoprazole which alleviated most of these. She has now weaned off this medication and has had no incidents for several months.

SDianeL · September 7

So sorry you are at this point. My DH began having swallowing issues. The facility changed his diet to soft then puréed. He would pocket food in his mouth and not even try to swallow. He aspirated and died from aspiration pneumonia. You may have difficult decisions ahead. What helped me was knowing his wishes. No feeding tube. No treatment. If your DH is not on hospice I would ask for an evaluation. They will be able to answer any questions. 💜🙏

GothicGremlin · September 7

This was a tough one for us as well.

My sister would forget how to swallow (she was end stage 6, beginning stage 7 at this point), and like you, we had to coach her to eat. We were hand feeding her, with tiny pieces of solid food (and I do mean tiny). Her doctor was leery of pureed foods because she believed them to be a "food of last resort" - as in horrible texture and looks really unappetizing. So, we held off for as long as we could. But, as it turned out, she wouldn't eat the pureed food anyway - can't say I blamed her. We tried homemade spaghetti sauce (my family is Italian), and that worked a for a short while, but eventually we got to Boost.

I don't have any advice for what to do if your DH wants to eat, but can't swallow, especially with no feeding tubes. We didn't do feeding tubes either, by the way. It killed me, but I followed the advice of hospice.

Palmetto Peg · September 7

Again, thank you all for your advice. I think it is time to ask for a hospice evaluation. He has been losing weight, is in a wheelchair and needs total assistance with all ADL's. He is double incontinent and now has to be hand fed. He doesn't seem to have much sense of taste, so pureed foods might work for him. I am also going to ask for another swallowing evaluation. The support here is amazing and I don't know what I would do without you! Hugs to all!

A question about swallowing difficulty

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