PSP and tracheotomy?

[AnisFer]

I explain: 12+ years with PSP. 1 year with tracheotomy. Every need covered (Its sucks!) My question is how long will this stage last? Normally I read that PSP patients die beacuse of PSP with problems due to their lungs. My father has his lungs covered for ever! I.e. machine breathing and lung cleaning (so so painful to see! I can't imagine how it is to expirience it, 3 to 4 times a day! )

How long will this new stage be if the normal out is covered? I just see how the illness will completely take over. (Sorry if my question is to direct, sorry for those who disagree with what's going on(it is how it is and it sucks) )

[SewBears]

I’m not sure if I understand your question but I’m going to try to answer. There’s no need to apologize on this site. You’re right, the disease sucks! You feel the way you feel and it’s good to vent and to ask questions.

When my mom passed away from lung cancer we kept her comfortable with morphine. She couldn’t eat and didn’t want a feeding tube. She was already very weak. When she was taken off of oxygen she was gone in about 48 hours. I’m not sure if this is the question that you are asking though?

[AnisFer in reply to SewBears]

Thank you for your words. He is being pushed to a very cruel limit so I understand if someone is pasionate about it.I can't do anything I can,only love him and advise and love my mom. I am most thankful for the support and comfort that you gave me.

Well, normally when the time comes that their throught can no longer respond the end of life is near. Better said, when they enter to the end of life stage one can know what to expect because of people that share previos experiences. I know is not exact science but about 3/5 months tops, for what I have read. My father has been in this stage for a year. I don't think it will end, well at least not soon. His heart is fantastic his ancestors lived until 102. He has some issues with his kidneys because of all the tubes but nothing mayor. He doesn't need help with bowel movement. His lungs are taken care of. With a machine breathing for him, how long would he live for, approx? Any ideas? Rough to ask, rough to answer but what he is living is pure torture! My mom is exhausted emotionally. I am, of all of my family, the most informed about PSP and this is out of my league! They all,keep saying soon soon. And I just don't see how can he rest if nothing (other than horrid PSP) is going on.

Thank you, again

[enjoysalud]

Perhaps the question of your post should be " Any experience with PSP and a tracheotomy?"

I don't think I have read of anyone else's posting (regarding a loved one with PSP) having been given a tracheotomy.

prayers.........

Los Angeles, CA, USA

[AnisFer in reply to enjoysalud]

Me neither, when the doctor suggested to do this I told him, no one does this for PSP patients (its crazy!)

[dollydott]

Hi AnisFer

Your post is shocking to read.

Your poor dad having to go through such pain each day and for you having to watch it I'm so sorry .

I can't answer your question but hope that your dad will find comfort and peace soon

Lynda 🧡

[AnisFer in reply to dollydott]

Thank you Linda, ❤❤❤

[Hiking13]

My husband had a tracheostomy for the last 5 months of his life. He had the tracheostomy last July as he took ill with breathing issues and because he couldn’t cough they couldn’t take the tracheostomy out. He was diagnosed with PSP in September, we married in October in hospital as he was in and out of intensive care. The work involved in caring for someone with a tracheostomy is relentless and I was fully trained to do all of it and watched my husband endure the suctioning etc multiple times a day for all of that time. He was on and off breathing machines in intensive care but when I finally got him home on Dec 17th we just had a nippy machine which assists with a patients cough and nebulisers, oxygen etc etc. Sadly my husband passed away on Dec 26th. Without the tracheostomy he wouldn’t have made it to the end of July, he was always so patient and tolerant of all the unpleasant procedures and I feel very proud of him for that. It’s a hard journey and I will think of you

Love Sarahxxx

[AnisFer in reply to Hiking13]

Sarah thank you for sharing, without my fathers tracheotomy he would not have lived passes last April. I am so grateful for this last year to still have him. I am so humble by his effort and his love to live. I am honored by his bravery and I wish to honor him with a good life. Still, it is a bitter sweet experience. I wish he could rest.

[SuzanneA]

I read a very good and realistic answer to AnisFer last night. It seemed to have disappeared. I hope our PSP friend posts it again.

[AnisFer in reply to SuzanneA]

I hope he/she does.

[SuzanneA]

Thinking of you.

[AnisFer in reply to SuzanneA]

💜🌈💜

[SuzanneA]

How is your father doing?

[AnisFer in reply to SuzanneA]

I live in the US and they all are in Mexico. I am very fortunate to be able to spend 10 week a month helping out and loving him. My mom rests and I love him. He is stable, but the illness has progressed so much. He barely moves, he can't respond to questions with his eyes nor hands anymore most days. He gets his lungs cleaned 6 times a day. He is here and for what I can see, for the long run. I am thankful for beeing able to hold him. Its so hard to witness. At the end of this month, it will be 1 year he is with the tracheotomy and the lung cleaning. (That's the worst) thank you for asking💜💜.

[rriddle]

Over the last 15 years running a large local support group, I've known a few people with PSP and trachs. Yes, they can live for a long time (1-2 years is probably the max from the group I know). Something not-lung-related will kill them. Examples - heart attack, infected bed sore, bad fall.