My dad...

[Anne19]

I don't know what to do. My dad is being brought to the hospital as I write this. He's having a hard time breathing. A week ago he was operated for tube feeding as he can no longer swallow. He's in bolus feeding of ensure. Now he's having a hard time breathing. We had him on a nebulizer everyday as well as sucking machine for his thick saliva.. but still he ended up like this. What's happening? I'm so lost.

[easterncedar]

It sounds as if you have been doing everything you could, Annie. I don't know what's happening, but I wish the best for you and your family. Hang on. Easterncedar

[SharonAB]

Dear Anne,

What is happening? It sounds like something the medical profession will need to assess - so I think the best you can do, is continue doing what you are doing so well already - getting your Dad as much assistance as possible and asking questions.

PSP is an illness that affects so much of the body. And what makes it so very hard is that even on the best days we have, it creates self doubt as we question and reassess what we should or could or can do or be done better ...

Regards,

Alana - Western Australia

[nomansland]

Sorry to hear that Anne,I have been wondering...sometimes the stress of the realization of what is happening could bring that on...praying he will be ok...Rollie

[Anne19]

Thanks for all the replies. Just been to the hospital to visit my dad. His doctor suggested another operation to be done to avoid another episode like this. Said to have his throat opened so we could suction well. But he became honest. It could prolong his life but what about the quality of life. My mom and my siblings decided not to pursue with the operation. His doctor also said that if another episode like this happens again we should not bring him to the hospital anymore. But I don't know what to do if that time comes. I don't know if I can stay beside my dad with him breathing heavily and waiting to pass away.

[quickgel in reply to Anne19]

Dear Anne, I recommend you contact a local hospice for advice on how to make your dad as comfortable as possible. They have much collective experience on combinations of drugs that can ease a difficult time of life and I found them more attuned to the situation than our local GPs. Our hospice had nurses who visited our home and liaised with the GP regarding prescriptions. It's a wretched time for you all and I hope you find the help and support you so obviously need. Best wishes, Jerry.

[jimandsharynp in reply to Anne19]

Anne, So sorry that you have to experience this process at your age. I can sense your feeling of helplessness and we have all felt it at times, even as adults. PSP is a rough trip for us all and we can only do our best for our loved ones. Being bedside and holding your dad's hand and talking to him are important for you both. For him because it will let him know he's not alone in the fight. For you because you don't want to look back with any regrets. My daughter was 18 when her mom passed and she couldn't handle the process at the end. She stayed in her room. She mentioned recently how she stayed in her room and I wonder if she is having any regrets about that. It would be wonderful if you and the family would LOVE your dad from this world into the beyond by being close and talking to him. My grandson Zack came to visit my wife, his grandmother, in the last day of her life. He just sat by her and talked normally telling her what was going on in his life. Zack is 16. Anne, you can do this, and you will. Jimbo

[jimandsharynp]

Anne, This disease can leave us all feeling "lost". This darn disease is in control and we just aren't use to anything being in control to that extent. I've read that it is possible for patients with a PEG to aspirate if the feeding isn't done properly. Aspiration can cause pneumonia and problems breathing. Not saying that's what happened to your dad. Your dad could bounce back, that has been known to happen with PSP patients. I think the unpredictability of PSP is the most difficult thing to deal with. Stay strong for your dad and family. They will be looking to see how you handle this situation (the young ones in particular). My daughter was 18 when my first wife passed away from another rare brain disease so I know what you are going through. My thoughts and prayers are with you and your dad. Jimbo

[jillannf6]

hi anne

so sorry to hear about your dad

please know that a lll of us on the site are thinking of you

lol Jill

hugs and xxx\