Thickened liquid

[Momto5]

When did you know it was the right time to start thickening the liquid and grinding food? I've been grinding dads food when something that has to be chewed is made for a meal and I switched him to a straw because he would guzzle his drink down. I told my mom that dad should always be sitting up when eating or drinking and to slow down when feeding him. I've noticed more problems with his spit collecting in the back of his throat and it causes coughing spells when he reclines. I started giving him tea with lemon to cut the spit down and it seems to have helped. The problem I am noticing now is that even when drinking from a straw and sitting up, he has times when he seems to have difficulty swallowing and he gags and seems to struggle to catch his breath. My mom, (not sure what is happening with her yet) doesn't listen to what I am suggesting for dad and tonight she gave him his drink without a straw and he guzzled it and started choking. He couldn't catch his breath and she just kept putting food in his mouth. I told her to stop and finally she did and I tapped on dads back until he breathed more normally. I noticed that mom had not grounded his meat and was feeding it to him in chunks. He has no upper teeth either. Every time I have tried to talk to mom about psp and what might help dad, she agrees and then does the opposite. She sits in the kitchen most of the day and gets upset at me for not spending more time with her. I want to but I can't leave dad alone because he gets anxious. He wants it dark and quiet. Mom won't sit in the living room with us because she says it is too stressful. My brother and I are worried about her and are looking for someone for her to talk too who might be able to get through to her.

I need advice about my dad and his coughing and choking. He had a swallowing test about a month ago and they said there was some narrowing and some throat spasms. They didn't suggest any change in his diet but I feel he is in need of a diet change with thickening the liquid and grinding foods that are hard to chew.

Any advice would be appreciated. I'm planning on calling his dietician tomorrow.

[jillannf6]

HI I HAVE PSP AND TEND TO CHOKE OCCASIONALLY AND CANNTO BREATHE - USUALLYU WHEN IN BED OR IT COUDL EB ON FOOD IF I TAKE TOO MUCH INTO MY MOUTH AND DO NOT EAT SLOWLY ENOUGH

I KNWO IT SI PART FO THE PSP BUT IT SI DIFFICULT TO SLOW DOWN ENOUGH TO NOT CHOKE

I HAVE THICKANDEASY ATO USE WHEN I NEED IT IN DRINKS

LOL JILL

SORRY I CANNOT BE OF MORE HELP

[Hidden]

We started thickening mum's drinks when she reached the point that drinks were making her cough a lot. Her reactions were too slow to stop the odd bit escaping when the liquids were runny and she was helped a great deal by the thickener even though it was only a scoop in each drink. It seemed to give her more substance to feel and recognise when something was in her mouth and moving towards her throat. We eventually went on to straws with a non return valve but that was when she got weaker and her sucking was affected and wearing her out quickly. We had a speech and language therapist who monitored mum's swallowing with regular visits and she advised us each step of the way. She was actually the most reliable and consistent professional during mum's illness in fact. Thank goodness for that!

[peterjones]

well mate i would say your dad is ready for it now by the sound of things like jill said its difficult to slow yourself down i have been going to a physio therapist for nearly 6 years and all my movements are way ahead of everyone in the class i thought this was great until she kept on to me to slow myself down\\ the same with speech pathologist just a little bit longer with her anyway mate\\ i drink dark grape juice to break down any spit or phlegm i hope you are not eating your tea or dinner now talking about this but i found it breaks it up and loosens it so you can get rid of it \\ i think you should become the carer because i feel that your dads must be having a terrible time with your mum i'm sorry to say i do not want to appear rude or callous but i can only go by what you have written if your mum is shovelling food down hes throat he could have aspirations and die im sorry to be so blunt about it but thats the bottom line they say that people dont die from psp its the other things like choking and having falls etc anyway try to explain to your mother that dad is fine but if she keeps on pushing food down hes throat he will not last very long \\\\\\\\peter jones queensland australia psp sufferer P.S. take care mate stick with it and it time for some thickeners in hes water and tea etc this should help him with hes coughing after drinking

[springbank]

I think your Mum is in denial. She may also have a bit of depression. PSP is such a terrible disease and really difficult to accept and know what to do to help. Maybe a strict heart to heart is required or a carer to deal with meal times. It is tough love all the way.

Do you stay in the UK?

[SuzieQ]

Hi there. My hubby has just this week started using thickeners in his drinks and what a difference it has made. At the moment he is managing with a syrup-like consistency but this can be increased as his need requires. It can be mixed to milk shake consistency and even thicker if necessary. At the moment he doesn't have such a problem with his food, but I try to give him small mouthfuls and take my time. There are lots of thickening agents available and it is just a case of choosing what suits your dad best. Another thing my hubby seems to benefit from is "fizzy" water and this mixes well with thickeners. Hope you can get something sorted quickly for your dad. Keep you chin up and take care.

God bless........SuzieQ x

[Sugardart]

A few weeks ago my mother started on Baclofen for muscle contractions. Since then my mother's swallowing has improved somewhat. That was a benefit I was not anticipating. It is difficult, as a carer, to know what to do and when. It often takes up to an hour to feed her and that is with verbal cues to chew, giving her one or two swallows through a straw rather than letting her suck endlessly, and giving her liquids through the straw intermittently between bites. There are some times when she won't open her mouth enough to get a spoon in. Giving verbal cues seems to help. If there are external distractions that seems to slow the meal down as she is busy watching what is going on. I can't imagine watching you spouse go through these changes, trying to care for them, and keeping your own sanity. If you are able it would be good for her to get some type of respite. If feeding your dad is difficult for her and it puts him in harms way a respite caregiver for meals would be a great idea. Keep being a good advocate!

[jimandsharynp in reply to Sugardart]

I totally agree with you on the "external distractions". I find that my PSP wife is easily distracted. The other day she was walking with her walker (nothing new) and she stopped to check a blouse of her's I had washed and hung on the bedroom door. Next think I knew she was on the floor (carpeted so no injury). Also, when moving from her lift chair on her walker to go potty if there is something on TV it distracts her and I can see he waver a bit. I'm almost at the point of turning TV off when she isn't already in her lift chair.

Jimbo

[Momto5]

I tried to talk to her this morning about the thickening. She said she didn't think it was time for that yet. I pointed out the choking incident from last night as calmly as I could. I suggested she call dads dietician and tell her what has happened and see what she suggest. She called and left a message. When I made dad his hot tea with lemon I asked mom if we should just try the thickener and she said okay. I had dad sit straight up and helped him with the cup. He drank it slowly but finished the whole cup without coughing. I asked if its was easier to swallow and he said yes. I'm hoping the dietician agree that this will help dad now. I live in the states on a farm so we don't have a lot of help. Thanks you all for helping.

[JoJo-K]

My mums speech therapist advises when thickeners should be used and by how much, again with food, first mums food had to be mashed, then if we find her coughing more the speech therapist comes back to review, she also writes to mums GP with updates and any medication or treatments she thinks will benefit mum. She really has been a godsend. Referrals to specialised speech therapist can be made through either your social worker or GP. Nestlé make cup drinks in apple or orange flavour that come in 3 different consistencies, again these can be prescribed for free by GP if requested by speech therapist, they are smoother and more pleasant than the thick & easy, with no nasty lumps in. Hope this helps, I'm in UK, Not sure of your location. Wishing you and your dad all the best xxx

[cabbagecottage in reply to JoJo-K]

can you buy the nestle drinks over the counter .

[jimandsharynp]

I started using a thinkner as soon as my wife started coughing when swallowing. Often she wants me to add pure water into the thickened mix and I do that just a bit as long as she has no problem swallowing. Not much of an issue with food but I notice I have to remind her to keep the volume of food entering her mouth down (not too full). On thing with swallowing is that the patient must think "I'm going to swallow now" and you have to prompt them to "think" swallowing. Don't ask me why but this concentration on the swallow does help. Keeping the chin down toward the chest when swallowing also helps. Sounds like your mom isn't coping too well with your dad's situation. You may have to watch her interaction with him as much as you watch him. This is a terrible and tough disease. Wish we all had better answers.

Jimbo

[cabbagecottage in reply to jimandsharynp]

I had to thin thise drinks they can be so thick they make it to difficult to suck through the straw

[Momto5]

We spoke to his dietician. She agreed thickening was a good idea and ordered it through the VA.

[kryste]

I took my Aunt Bev to a specilist and we watched the in side of her throat and on a monitor we could see that drinking with a straw was the main one that was causing liquids to try to get in her lungs so do not use a straw thinken  works great it helped my Aunt drink what she wanted just be careful when shaking up a soda it makes a mess even with thicken she tried to drink all of it fast so what I did is got her a little kids sippy cup the one with only three wholes in  the mouth she can only get a little bit at a time.  And start grinding his food believe me it gets worse so do all you can to make it as easy as possible not so much meat it is hard for them to chew and swollow.  Im sorry I have no advice for you about your mom just remember its difficult for her to I know you want to pull your hair out most of us do but keep your head up and do the best you can and keep them laughing and what ever exercise you can

lots of hugs 

Kryste

[cabbagecottage]

We used thick and easy at first until the dietician prescribed Nutulis . It's so much better , the liquid stay clearer ,  you can add as much as you need . It's trial and error