Ng tube complications in psp disease

[nahida2019]

My mother is suffering from PSP disease for last 7 years, first diagnosed in mid 2012 by Dr. Sunil Pradhan. Probably she is in her last stage now. PEG tube is referred for last many months but she decided to not opt for it. Her diet was mostly crushed food of honey consistency initially and for last 5 months, it's reduced to mostly milk, ensure and medicines mixed with honey.

Recently, it's deteriorated so bad that she can't take even water from mouth. She had bad cough and was admitted in hospital to recover back. Since then, she is on ng tube, been around two months.

These days, she is gettings uncomfort with tube, especially at night. She feels the urge to remove it and we yet couldn't figure out why? She removed it multiple times in last week itself. We tried gentle tying of hands but didn't work either. Ng-tube was adviced to keep for 3 weeks before replacing. What could be the possible reason for her removing it? And what steps can be taken to make things little more stable?

[Willow_rob]

Nahida, perhaps this is the only thing she can control. My wife has made the decision to leave us and has stopped eating and drinking. It is the only thing Mary can do. My thoughts are with you

[Hidden]

My spouse wouldn’t keep any thing on or have anything attached to him. He removed everything. It sounds like it is bothering her and she wants it out.

[doglington]

Chris made the decision to stop all food when he had had enough. I felt it was important that he was allowed to control something. PSP took all control away.

xxx

[Dadshelper]

You say she decided against a PEG but you allowed a NG-Tube. I agree with my forum mates that she probably doesn't want the tube and is trying to get rid of it.

Ron

[Hidden]

I believe in making our loved ones as comfortable as possible... which is what l want when the time comes. I am very vocal about my wishes so hopefully there will be no arguing or misunderstanding later. I think my hubby & my son's will honor my wishes but l also think they wish l'd shut up about it. Do the best for your mom at this most difficult time. Sending hugs... Granni B

[NannaB]

She may be telling you she has had enough, which is what my husband did. His GP agreed I didn’t have to feed him and he left me 11 days later, very peacefully.

❤️ X

[nahida2019]

I asked her and she is agree with ng tube. Should I tie her hands at night??

[doglington in reply to nahida2019]

What does she suggest ?

Chris removed the convene , although he promised not to, and didn't know why. I threatened to tie his hands - which he agreed to but I didn't think was right.

It's a dilemma and I'm not clear about the answer. It's down to her if she can tell you.

Love Jean xx