My wife has been finding it increasingly difficult to chew her food; her tongue does not always respond so the food does not get moved under the teeth, she also has trouble swallowing at times both due to her throat muscles not working well (she cannot cough on demand) an her tongue not always moving the food to the back of her mouth.
On top of the above sometimes when the food is in her mouth she is making minimal chewing movement and effectively holding it in her mouth and appearing "zoned out"
I have found a very useful document on food and diet on the PSP society of Canada's site google.com/url?sa=t&source=... and I am waiting for an appointment with SALT.
My question is, has anyone found a way to prompt someone to start chewing again when they are "zoned out"
I might add that sometimes she has no problem at all but it is getting increasingly more frequent that she has these problems
Thanks
Written by
Zerachiel
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When my mother zones out while being spoon fed, she stops swallowing and her drink or food and saliva start flowing out of her mouth, and her tongue sort of falls forward and wags. I have realized that she is basically asleep. Occasionally I can get her to swallow by putting an empty spoon in her mouth and she will reflexively close her mouth around it and may swallow, or may just let everything drip out again. However, I have found that it is better to just pause and give her a break until she rouses spontaneously—especially with the danger of choking. Feeding her takes an hour. Although she can chew, the speech therapist said that it is a lot of work for her to chew and eat, so the therapist suggested that we purée at least half the food in her bowl, and give her breaks during a meal, so that she doesn’t get worn out. You might try that. I leave some small minced bits in the purée for textural interest—I don’t purée it until totally smooth. A mini food processor works well.
A couple of years ago the consultant wanted to introduce a PEG as eating and swallow was compromised but we declined the surgery opting to use large bore clear plastic petrol pipe as there was still good suction .Conventional straws were too small bore to allow the thickened prescribed food replacements through.Before this intervention weight had worryingly gone from 70 kg down to 38kg.So we have been able to plateau the weight and the dietitian and consultant are very impressed and personally we are reassured about our decision.Do question everything and do research all options.Good luck.
Thank you so much for the information from the dietitian. That will be very useful. My husband isn’t at the stage that your wife is yet but I wanted to suggest tongue exercises. We had a swallow study done and the speech therapist noticed that my husband doesn’t move the food around in his mouth efficiently. So as part of our daily speech therapy I ask my husband to stick his tongue out as far as he can, pull it back in as far as he can, move his tongue to the left, right, left, right and finally press his tongue to the roof of his mouth. Good luck and all the best to you and your wife.
This eating behaviours is usual with PSP sufferers you only have to look at how PSP is affecting arms, legs and the rest of the visible body to realise what it it is probably doing to the mouth, throat and other parts of the body that you cannot see. As usual, as careers, we have to adapt and deal with it. I agree with everything Martina-MP says meals take a long time (thank heaven for microwaves to warm meals up again during mealtimes). To stimulate interest I try and present my wife with the meal as it would have looked in normal times before taking it into the kitchen and giving each individual part a wiz in the food processor to liquidise it (must add additional liquid) to the consistency that we have found she can eat. I also have to be very imaginative with recipes adding many different herbs (and a slug of wine sometimes) to try and stimulate taste buds and using high fat high protein ingredients to get energy into her. The only short cut is to have a PEG fitted and bypass most of the feeding but my wife decided a long time ago, and has reiterated many times since, that she does not want a PEG and accepts all the risks that involves. As a carer just accept that feeding is a very intimate act and that it is a time to be very close to your wife. All the very best.
My wife was at this stage and then one day she started choking on her pureed food and couldn't take any liquid to try to clear it. I think it shocked her and gave her a reality jolt. She then decided to stop eating and drinking and passed away within a few days. I think nature takes care of itself once you get to this point.
Hi - We moved mom to pureed mostly. I do give her a piece of gum every so often and get her to chew on that for a couple of minutes. Find it's a good exercise to get the brain prompting the chew. The other thing is to try and distract her or we leave it for a bit and go back to it and many times, she will go back to doing it again. Also good to shut the tv off or any other things that may cause a distraction.
Always seems to be an experiment, being creative. If she's not eating much, I know she will drink a cold, thickened meal replacement - Strawberry Boost or Glucerna, then return to bananas and other foods that she likes.
We are this point with my mum and our experience is pretty identical. Thank you for asking the questions as the responses you have had are very helpful and useful. Take care.
Thank you all for your suggestions and advice, it is so easy to get stuck in a rut and another person's experience gets you thinking differently. I do appreciate all your responses.
I am lucky that although she is having these problems, along with speech and eyes closed most of the time she is still mobile and trying to be as independent as possible. She also has occasions where she can eat fine and keep her eyes open but the shut down again without warning.
I agree with many of the other comments-- especially that this difficulty might be a sign of needing a break from eating until another time.
When this difficulty would happen to my mom while we were feeding her, we often found that putting light-medium pressure on the tongue with the spoon when placing the food in her mouth would give her tongue something to respond to and would almost "wake-up" the tongue in a way. This helped with allowing her to chew as well as use her tongue to push the food to the back of her mouth to swallow.
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