My mother has PSP disagnosed 6 years ago. She can usually eat solids and swallow but every now and then her throat seizes and she is unable to swallow so food and drink stays in her mouth and we have to clear it out. Her communication is very poor (she is able to speak most of the time but doesn’t, for example, she can repeat phrases we give her but has no impetus to initiate conversation or answer questions with more than a yes or a no).
During these episodes she sometimes seems desperately thirsty (reaching for a cup) but as she can’t swallow we can give her anything. Has anyone found anything that we could do to alleviate her thirst that doesn’t involve swallowing? Thanks so much
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Saramichaels
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Have you tried thin smoothies. It sounds as if it is now time to mash or purée her food and thicken her drinks. If you are in the U.K. thickener can be provided on prescription and my husband did get used to it in tea. He would also drink those packet cappuccino’s which were usually just thick enough to avoid choking. Rubicon mango juice didn’t need thickening and fruit smoothies with added water were fine. My husband got to the stage when he couldn’t drink water at all. I think he was scared of choking so let it dribble out of his mouth but if I then gave him something else, it slipped down fine. Does your mother’s throat seize up or is she doing what my husband did and avoiding swallowing in case she chokes?
He was eventually fitted with a peg feeding tube so water was given through that but to keep his mouth moist I bought a fine spray bottle and sprayed his cheeks. It wasn’t enough to make him choke but enough to make him more comfortable. Perhaps that would help her but it will not be enough to keep her hydrated.
I hope you manage to get enough fluid into her to avoid dehydration and other complications.
Thank you for replying. Most of the time she is able to swallow normally so is still on proper food. We tried thickener a few months ago and it didn’t seem to help but maybe it’s time to try again. During these episodes she seems to completely lose the ability to swallow. The spray is a great idea. We will definitely try that.
The saliva spray seems to work fairly well for dad. When he was in the hospital a few times, they had little sponges on a stick that was soaked in water then he could suck on the sponge.
Thank you, those sponges sound great (Although I suppose we will have to be careful as she sometimes gets confused and might try to bite them!) I’m definitely going to try a spray.
Hi Sara: Could giving her a cold wet washcloth to "chomp on" help? The feeling of wet and coolness in the mouth... Or could she handle an ice cube? Does she have enough control/cognition to just let it melt in her mouth, spitting out the "melt" as necessary? Sometimes just having the wetness in the mouth and not all the way down the throat is enough.
Yes I think ice might be a good idea, maybe a spoon of crushed ice? She often wouldn’t have cognition to understand but if we give her small amounts it hopefully won’t get too messy.
Good idea. I’ll ask, although cups aren’t the problem in this instance, it’s just a complete inability to swallow at times combined with a thirst and it’s so awful to see her desperate for a drink.
Thanks Kevin, thank goodness this is only an occasional issue for an hour at a time maybe twice a week. The rest of the time she’s still eating solid food and drinking as normal from a normal cup. We are monitoring her weight so we can keep check of any deterioration.
In short these are my experiences expecting they could be useful:
Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia,” (Besides falls, this is another very important risk.)
•Add thickeners (eg, Resource from Nestle) to drinks (water, Aquarius orange or lemon or similar, etc.) till obtain a bit glutinous liquid. To drink, it is advisable to use a special cup (Ornamin 815) with the chin as near as possible to the chest.
•The speech therapist has insisted that she should not take meals that "deceive" the mechanism of swallowing that is damaged. The foods that “deceive” are those that have liquids and solids in the same bite (eg, some beans with soup or a soup with pasta).
•Phlegm and choking: The first thing is to remain calm during episodes of truly shocking coughs. The second is that a physician rules out an infection in the respiratory tract.
•It is not a big problem that the patient swallows his phlegm. For phlegm tro be fluid, it is important to drink liquids. Steam inhalation from boiling water with a few drops of Eucalyptus essence and a small spoonful of Vicks Vaporub (Olbas Oil in U.K.) with a towel covering head and bowl helps. (One to three times a day.) Medications like "Mucosan" (Ambroxol hydrochloride) in the morning and in the afternoon help.
•In case of choking, raise both arms at shoulder height, breathe only through the nose intensely if posible. I not, inhale air intensely but not very fast through the mouth. Retain air a couple of seconds and then force the cough.
•There is a suction machine which helped a lot with the very sticky phlegm. We have NOT used it yet.
•A steam atomizer to keep the air in the room moist helped, too. (40% - 52% moist advisable.)
•The physiotherapists have exercises reinforcing trunk muscles to improve the cough response to choking.
Thank you, that’s all really useful. I feel like there should be a book of PSP with all this info in it. It’s so hard to find good advice, most doctors dont seem to have any experience of PSP.
Luis has given some excellent advice and summarize everything you might need to change, now. Don't wait for her to deteriorate more.
Sounds like it's time to change how she eats, we started changing little things but she kept choking, so the doctor said it was time to change to a feeding tube, I said no, it's no, so I started pureeing everything.
Remember you're dealing with another muscle that turns slow, she needs to have things in her mouth that give her enough time for the gate in her throat to open slowly, solids are not so good because little bits try to pass at different times, water goes too fast because it's too fluid. When food gets into the lungs you'd end up dealing with aspiration pneumonia, and if it gets stuck in her esophagus, it'll keep making her produce more phlegm.
We use Nestlé Resource for liquids, works wonders. Her pills and vitamins I use a thick apple sauce, though I make a batch of apple sauce or pear sauce and freeze it every week. I like homemade better, because the commercial ones are a little runny.
Get a good food chopper. Believe me, everything can be turned into puree and will get even more delicious.
Veggies I cook them till they're soft and then puree. Meat, chicken, puree. Pasta, Chinese food, you name it.
Eggs, I use cream to cook them so they end up silky and smooth.
Make lots of smoothies, she needs fruit and vegetables, just remember to sift them if you have seeds or too much fiber.
We all tried to put a little bit in here, hope something works for you.
Food this way makes them loose weight as a side effect. Maybe consult with a nutritionist on sizes and combinations.
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