Unable to eat or drink

[Boyce3600]

What is the best thing to do when he cannot eat or drink without gagging or choking because of the swallowing problems?

[HARRADL]

Hi there,

We continue to make changes to softer foods, smaller bites, more chewing, and augment as required (i.e. from mashed potatoes to mashed with gravy added), yogurts, macaroni and cheese, puddings, smoothies etc.) Use of Ensure/other liquid meal replacements and puree food to a smooth consistency. I've even bought some pureed baby food to see if my mom likes it.

We add the liquid thickener to water, juice etc. and use a sippy cup as it helps to limit the amount of liquid swallowed each time.

Hoping you continue to find things that help ease the choking.

[Boyce3600 in reply to HARRADL]

Thank you for taking the time to reply we have done all that you suggest except the liquid thickener I'm doing Thicket, which is a granular powder, I guess you could say. However in the last three to five days he has gone from eating fairly well to not chewing or swallowing anything he lets it sit in his mouth.

[key4u in reply to Boyce3600]

Could be tired or there are too many distractions. Make sure person feeding does not speak and TV off so he can concentrate on swallowing. Might be tired from coughing you can get doctor to prescribe Scopoderm to stop saliva and it saves energy from coughing that can be used for swallowing.

[key4u in reply to key4u]

Also our speech & language therapist actually changed the diet back to thinner foods after mouth transport muscles failed.

Before that they recommended food be made slicker so moves through mouth easier by adding dairy like butter and cream which the dietician already recommended to keep weight up.

[bazooka111 in reply to key4u]

Completely agree - I have to turn everything off (maybe soft music) — so my Mom can concentrate on what she is doing. My Mom also pockets food - and I have to constantly remind her to chew. we are on very soft - no drinks in between (at the end of the meal for us) — very slow process. I hope you find something that works

[key4u in reply to bazooka111]

It may be risky but I thought I’d add that a few times when he was completely asleep in the chair, swallowing went real smooth. Finished a bowl of puréed food in record time. The speech, language and swallowing therapist suggested that maybe because the natural instinct to swallow was overriding the misfiring of the brain due to PSP.

[Kasenda]

Hi, my husband was at that stage too and was advised to have a PEG feeding tube into his stomach. Has had it for over 2 years now and he is now completely dependent on it as he is no longer able to swallow food or drinks. It has been good for him to have it as at the start he was still able to continue to eat but we topped up the fluid intake through the tube. The choking episodes were much less.

[bazooka111 in reply to Kasenda]

I am curious - I’m trying to imagine my Mom not being able to eat food anymore — she loves food! We are on soft — slow consumption— but still able. How has this impacted your husband psychologically in not actually eating or drinking? Is he having anything put into his mouth?

[Kasenda in reply to bazooka111]

Hi, you can continue to eat and drink even with the PEG tube in. He was able to take food as usual, but I topped up his fluid intake through the tube. This stopped the urine infections which he was getting through lack of fluids. But gradually the swallowing got worse and food in any form was impossible without choking and he would refused it. So having the tube there already, the dietitian has put him on a milky drink with vitamins and minerals (Fortisip) which is supplied and I put this through a syringe 5x daily. He has a small amount of ice cream by mouth and taste of tea or water on a sponge stick when he wants it. Hope this helps.

[bazooka111 in reply to Kasenda]

So very much! Thank you!!

[LuisRodicioRodicio]

Hi Boyce 3600!

I'm sorry PSP/CBD/ etc. has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the notes-document with our experiences and our informations are of someone´s interest, do not hesitate to let me know to send it by the private mail of this chat.

Meanwhile and through the internal chat of this website I have sent you the part of the document that collects our experiences and information and that talks about choking and swallowing problems

Hug and luck.

Luis

[chonamona in reply to LuisRodicioRodicio]

I also would like to read your notes and get helpful ideas for my father.

[LuisRodicioRodicio in reply to chonamona]

I shall send the information by internal chat on some minutes.Big hug and luck.

Luis

[bazooka111 in reply to LuisRodicioRodicio]

You are always so informative- I appreciate everything you have shared over the years - Hope You’re well - Kim

[LuisRodicioRodicio in reply to bazooka111]

Thanks a lot.

I am happy to be useful and help caregivers and patients traversing this PSP wilderness.

A big hug and courage.

Luis

[HARRADL in reply to LuisRodicioRodicio]

Thanks Luis. I read everyone's replies and suggestions like gospel. It has been most helpful.

I'd love to read your documented notes as well.

I can be reached at [e-mail]

Thanks again!

Deb

[LuisRodicioRodicio in reply to HARRADL]

I did it.A big hug.

Luis

[CarertoPSP in reply to LuisRodicioRodicio]

Hi Luis, Please can I have this information also 🙂

[LuisRodicioRodicio in reply to CarertoPSP]

Done.Big hug and luck.

Luis

[Bojszi in reply to LuisRodicioRodicio]

I would also like to read your notes. Thanks

[LuisRodicioRodicio in reply to Bojszi]

Done.Big hug and luck.

Luis

[Afar in reply to LuisRodicioRodicio]

Luis, could I please have this info tooPx

[LuisRodicioRodicio in reply to Afar]

Done. Big hug and luck.Luis

[Martina_MP]

I’m sorry you and your husband are facing this difficult time. What is his level of function otherwise? Can he move, speak, communicate? Did you discuss any advance directives / plans for when his disease got to this point, whether he was amenable to a feeding tube or not?

[Dance1955]

Atropine eye drops are very good for drying up Sylvia (just a couple of drops under the tongue twice a day )enabling my husband to continue with his eating and drinking to the point where when my back was turned he helped himself to a jam donut from the table and had no problem at all eating it Just saying

Hugs my friend 😊

[Auntbuzzy in reply to Dance1955]

Cheering for him eating a jam donut!!! Did you really mean to say you put eye drops under his tongue?

[easterncedar in reply to Auntbuzzy]

Yes on the eye drops under the tongue. Prescription atropine.

[oilman1]

We tried the liquid thickeners but the wife did not like the consistency so stopped using it. Outside influences (especially the tv) cause her to lose concentration when eating and she will tend to "freeze up". The one thing we found that does work is to alernate food intake with a spoonful of yogurt. As to the PEG, for us it all comes down to quality of life so we will not use it. My wife sleeps over 20 hours a day, has limited mobility, cannot read, can watch tv for only a short time, speech highly slurred, etc. For us, if she cannot eat then prolonging "life" is marginal.

[Stephanielayell82]

Yeah I agree it.may be time to consider peg tube for main nutrients. They are able to drink and eat normal when they have the energy to do so. And we use the eye drop on the tongue to help dry up sylvia as well. Don't wait until it's to late as my loved one has. Best wishes

[Purrlie]

Hello Boyce3600, So very sorry to learn of the swallowing difficulties. The Speech Language Therapist, on the ultrasound swallowing test my husband did, identified 4 or 5 elements in my dear one's mouth and throat that were not working properly when his swallowing reflex stopped functioning properly, and the SLT recommended a PEG as soon as possible. While we were waiting for the procedure we had a visiting nurse every day so that he could have subcutaneous fluids to prevent dehydration. He could not manage fluids at all, not even pureed foods. Excess saliva was a really terrible complication and caused him a lot of coughing and gagging. We found that rinsing his mouth out with really cold water or chilled pineapple juice helped him spit out a lot of saliva. I wish we had tried the drops to dry up the excess saliva. If possible I encourage you to have a swallow test done. All best wishes to you both, Purrlie

[Boyce3600 in reply to Purrlie]

Yes, we had one in January and were told that hecwas aspirating on all textures. Interestingly the advice was that I stop feeding him because of the possibility of aspiration pneumonia. I don't even remember them suggesting a feeding tube but if they did I declined because I know my husband would not want he has so many other issues and has really really no quality of life left so he has lived this long on food that he has enjoyed and now I will continue as long as he will take whatever he takes today was a better day

[Boyce3600 in reply to Boyce3600]

No one ever mentioned drops to help the saliva either I'm finding answers on this forum that I'm feeling so abandoned about from my doctors and they are movement specialist

[Martina_MP]

Yes try different things and give him time. His mouth might not be ready to handle swallowing at the moment, but after 5-10 minutes of letting everything spill out of his mouth, his swallowing reflexes might finally kick in and let him get something down. That’s what happens with my mom occasionally. If he really can’t manage any food, purées or thickened liquids, he should be on hospice so that hospice workers can help you keep him comfortable. They can give you support, equipment,supplies, and a nurse to call for questions and any issues. Take care.

[Boyce3600 in reply to Martina_MP]

many thanks

[Afar]

Thank you for this post Boyce3600…I came here just now to look for information to pass on to my sisters carers as I do not live near her but my mum told me last night that swallowing has started to become an issue. All the replies are really useful so to everyone who has replied a huge THANK YOU 🙏

Love and strength to you all.

Px

[Boyce3600 in reply to Afar]

yes, Thx to everyone. Happy this can help your Mom.

[Boyce3600 in reply to Boyce3600]

sorry, meant your sister. God Bless