Tricks for prompting swallowing ?

ninalu

Hello all,
My mom is late stage dementia & Parkinson's. She has documented dysphagia and is on a honey-thick / pureed diet. That has helped a lot, but she still coughs and sputters occasionally -- there are good days and not-so-good days. 

For the past several months of the pureed diet, no issues with putting food in the mouth and swallowing. Everything that went into the mouth also went down the throat. Eating / feeding was rhythmic and appetite has been pretty good. She refuses food sometimes, but she also makes big happy eyes at something that's especially yummy.  

Today, I noticed that some food is hanging around in her mouth - it doesn't seem to be making its way to the back of the throat for swallowing despite the fact that it looks like she's swallowing. I don't want to put more food in her mouth because big bites in the past have lead to choking issues, so instead I prompted her to swallow. But my prompting was simply met with a blank stare and desire for another bite. I tried to give her a sip of fluids - in the past this would help - but the thickened juice didn't even go in, just fell down her cheek. It's like she lost the ability to move food from the outside to the inside. 

What else can I do aside from wait, go slowly? Are there special tricks for getting a person to swallow -- maybe there are cues like turning on the faucet that don't require language / explanations? 

I want to make sure I'm doing everything I can to help her get nourishment. She's clearly hungry and asking for food, so today has been tough.  

Thank you in advance, amazing caregivers.

Marta

Sounds as though she has already had a swallowing study, as you have come up with a thickened diet. If yes, get back with the speech and language pathologist about next steps. If not, get an evaluation by a SLP, by asking the PCP for that referral.

ninalu

Thanks Marta! Indeed mom has been evaluated and followed by Speech & Language and we've maxed out the dietary recommendations. I am reaching out to her Hospice team about what I observed to see what they can advise.

Also grateful for any tips from those of you who've been through this with your LO. I often feel that as a caregiver, I'm a datapoint of one. It's helpful to hear how it's gone or what it's looked like for other families. 

Thanks!

harshedbuzz

ninalu-

I hope you hear back from the SLP or hospice team this morning.

Just an FYI, that may not apply given that your mom's is on honey-thick liquid, our SLP advised us that dad should not get liquids with food as they travel faster and could potentially arrive at the windpipe before the epiglottis had closed it off. 

We were advised to prompt swallowing verbally as dad's swallowing issues started when he was verbal to the point of conversation. She said to remind him to swallow before he put more food in his mouth. 

Good luck.

HB

ninalu

Thank you HB /|\ !

SunnyAB

Holding food/liquid in the mouth and delay in the swallowing reflex are associated with the PD, not just advanced dementia. Ideas: 

If you still notice that she has "on" periods during the day, feed her at those times. Cold temperature can sometimes stimulate a swallow: See if you can order some "Magic Cups" and serve them frozen. They are like ice cream but are suitable for people with dysphagia because they melt to honey-thick and they are loaded with extra calories and protein. Most importantly, everyone usually loves them. You can also try giving her "another spoonful" but not actually putting any food in the spoon or just barely coat it, in order to try to stimulate the swallow reflex. (Sour taste can also trigger a swallow but that's not easy to humanely incorporate into feeding time.) It sounds like this may be a "sometimes" occurrence now but it will likely progress as she nears end of life. You may also start to notice drooling during the day.  

ninalu

(Looping back in case this thread is helpful to others.)

I spoke with Hospice and they were very helpful. The advice was to:
- use a smaller spoon (child-size, not adult-size)
- let prior bite clear before offering more.
- eat / feed more slowly. don't rush. if it takes time, it takes time.
- don't force classic mealtimes (e.g. breakfast, lunch, dinner) - feed whenever she'll take it 
- feed what mom enjoys and whatever makes mealtimes and eating least stressful. don't over-focus on nutrition at the expense of enjoyment.
- expect that mom's food intake will lessen (it is lessening)
- aspiration may happen noticeably or it may happen silently. we'll have to watch for fever, rattling / sounds in her chest while breathing
- keep her upright after eating (I keep her upright for an hour afterwards)

SunnyAB, thank you! I'll look for the magic cups you mention. I like your suggestion to feed during the on times. In our case, this means about 1-2 hours after waking. Mom has fallen asleep during meals, with her mouth full and having not swallowed. I stopped feeding her during the times of day when she's likely to be dozing. She sleeps more and more, so feeding during her up / on times is going to be key.