PSP Association
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Coughing, choking and trouble swallowing + pain

As I write this I am crying. Charles is traveling down this road and has had several awful choking incidents. Just now on a pill. He still wants to eat but its getting harder and harder.

Hospice has taken almost all of his medications away because they aren't useful anymore but the pain is originating in the esophagus, which we knew would happen.

Let me know what I can do to help him. Lack of sleep has me not thinking clearly and I need guidance.

Cuttercat

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Oh Cuttercut I am so sorry. This is what happened to G too. They gave him a driver with morphine for the pain and another drug for the secretions. Poor Charles.

The Hospice are doing the right thing but if he is not on morphine he needs it. Don't be afraid to ask. Talk to the Hospice people Cuttercut. Thinking of you both and saying a prayer.

Marie x

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I’m so very sorry Cuttercat but I agree with Marie, time for morphine now, Charles shouldn’t be in pain, bless him, in fact bless you both x

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So sorry ~ I hope you can let Hospice folks take over so you can rest for a while. You need to take care so you have the strength to get you both through these difficult days. Good Luck and We'll be thinking of you both. ~ alicia

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Cuttercut, Marie is correct it is time for a syringe driver to be inserted so that morphine can be given at the same time hyoscine is added for the secretions. If the pain gets too bad an injection can also be given as a back up. The community matron organised this for my hubby and her nurses came in twice a day. My heart goes out to you and Gary. Will be thinking of you both. Stay strong .... Love and bear hugs to you. Jxx

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Thinking of you, cuttercat. So sorry.

The hospice should be able to manage pain.

Big hug from Jean x

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Oh dear lovely lady, my heart aches for you, yes let hospice take over with pain relief, psp is so unfair, sending you a big hug, and I am praying for you, try to get some sleep to help you focus on things, you are so tired you can’t think straight. We had a bad night last night xxxx. ❤️

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I know how it is. Lack of sleep always makes things worse.

Cuttercat

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Oh, Cuttercat

You have already had better advice here than I could give.

Just to say, rest so that you can do the thing only you can do: Be there to comfort him and share his leaving so that he is not alone and knows he is loved. Even if he is asleep he will know.

Big sad hugs.

Warmly

Kevin

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Hi CC, I use to crush all Steve's medication and mix it with something I knew he could swallow. Yoghurt, jelly is good, or even apple sauce.

Sending big hug and much love

Lots of love

Anne

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Dear Heady,

I am using the JELLY idea and it works! Thanks so much. He's eating again though smaller amounts and so skinny but he's hanging in. Each day is different.

Cuttercat

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Cuttercat, I am so sorry to hear this and also sorry I dont have experience/advice for you - just a sympathy hug ((()))

Group: what are the 'secretions'you speak of, that cause pain?? Thank you for enlightening!

Anne G.

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Anne the secretions are a build up of saliva. They are very distressing but thank goodness there are drugs to help dry them up. However, near the end the drug usually has to be changed to a stronger one.

Marie x

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Cutter Cat , I'm so sorry for you both..

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Liquid morphine given with an eyedropper inside the cheek. He doesn't need to swallow it for it to be absorbed, I was told. No need for intravenous kit.

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Oh Cuttercat, I'm so sorry. Thinking of you both at this difficult time. Lots of love Nanny857xx

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CC, ask for the liquid morphine to apply to the gums or inside the cheeks. My sister relied on it before she passed away from pulmonary fibrosis. It was provided by hospice. Sending hugs and prayers for a good night, and a better day tomorrow. Could you put the pill in soft pudding? ❤️❤️

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Hi , I too crush Ian’s tablets, and mix into porridge, he gets a lot of pain in his arms and legs, I have just got som CBD oil, and you put a drop under the tongue; the reviews are amazing, but it has to be gradually built up, I use it 3 times a day and so far no pain since, of course it could be a coincidence, time will tell, worth a google.

I tried morphine, but it caused hallucinations

Good luck with it, I know how exhausting it is, we are here 11 years on the road ❤️❤️

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Oh my 11 years! We are six. It's so slow and debilitating and sad.

Cuttercat

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Cuttercat my heart goes out to you I was in the same position last November. He needs the saliva dried out suction and morphine speak to the doctors in order to make your loved one comfortable. Stay strong and try and get some rest so you can comfort your loved one. Big hugs as its hard for you also Xxx Ronnie

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Dear CC

I have no words to help you with the never ending battles of this horrible disease.We are all here and hoping it does resolve it self.I wish I knew a non addicting magic pill that would give you some peace of mind and sleep.

Dee

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B did not tell me of any suffering until after the hospital stay for pneumonia. I can't really relate to why Charles is having pain....Has gone to an Ear Nose And Throat specialist? He might have something unrelated to PSP. I like Marie 14's comment about the Morphine. B used this after the hospital stay. Morphine actually helped him to breath better, who knew?

As everyone on here and Anne (Heady) stated. TAKE CARE OF YOU. Get some rest. You can't help Charles if you are sick and tired....

take care

Andrea

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Charles doesn't have any pain, thank god. What he has is pain from the coughing which now has abated. It comes and goes but when it does it's horrendous. We are quiet today and content.

Thank you for your care about us. I appreciate you so much.

Cuttercat

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I have a quick question, my mom is chocking something awful on phlym, hospice has her on some dissolvable pill ever 2hrs and patches behind both ears. My ? Is about the pain..she says it's like a severe sore throats, starts at her throats and runs down her neck and into her shoulder, the dr says her throat isn't red or swollen.. SO I was wondering is this the pain, you all are referring to? Or is this just psp? She's never had any pain anywhere until this!

Love Alli

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Hi Alli,

Cutter might see your post, but as the string was several months ago, people might not catch your question. Do you want to post it as a new question? ...just to make sure it gets the best viewing? (PS: I would answer but I don't have this experience!)

Good luck!

Anne G.

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Thanks Anne G, you are right, I didn't realize that. Just got excited, thank you for responding though :). Alli

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I know - I did it too when I first started: sometimes you don't know why a post-string pops up in your news feed...and if you don't see the 'dateline' (the 2 hours ago, or 3 months ago, etc) you think you're replying to something current ;-) It's all so relevant that it's compelling to reply anyway! xxAnne

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