How to stop someone with PSP pulling out the PEG constantly?

[Marcela-Hughes]

My sister is 4 years into PSP and she lives in a nursing home in Cali, Colombia. She can´t talk, she can´t walk, she can´t see properly, her left arm is paralysed with her hand totally closed and now she has the PEG. She is aware of what is happening to her and feels sad and depressed, so she pulls her PEG out when she loses her patience, when she is angry and I suppose when she doen´t want to live anymore. We had to rush to the hospital with her few times now and she does it again. Could you help me, please? Nurses at the nursing home don´t know what to do except to tie her up and they are asking me to authorise this.

[PAT0]

Hi Marcela, I can understand how awful it is for you all. My husband passed away 3 weeks ago from PSP He contracted pneumonia and whilst in hospital continually pulled out any tubes including feeding tube and catheter. The Macmillan nurse visited him daily and he was able to communicate enough to tell her that he wanted no intervention on any kind. His canular, feeding tube and catheter was removed after it was fully explained to him the likely outcome.

He moved into a Hospice where he remained for his final four weeks. He was given liquidised food and drinks when he wanted but during his last week he did not want anything.and died peacefully. Perhaps your sister is telling you that she has had enough, it did upset me when my husband would or could not eat but I knew it was his choice. My thoughts are with you x

[Marcela-Hughes in reply to PAT0]

Hi PATO

I am so sorry for your loss. This is a nasty illness that no one deserves to get. My sister has never accepted it, she knew she was going to die at some point, she knew what the PEG meant for her but she thought the doctors were wrong with the diagnosis. When the nurses tried to stop her pulling the PEG out saying that they were going the take a picture and send it to me here in London, she didn´t do it anymore. I am about to go to visit her and my mum in a week's time to see what she really wants and explain again the consequences of stopping her feeding. The whole thing is terribly sad, perhaps it is better to let her go in peace.

Thank you very much for your help PATO and my sorrow and condolences are with you.

Marcela Hughes

[PSPA_Samantha]

Dear Marcela,

Sorry I don't have a tel no for you. Please send me an email to: [e-mail]

Samantha. PSP Nurse.

[Vitruvian]

Dear Marcela,

I can't imagine how upsetting this is for you. I can't speak about your sister, but I can speak in general about my experiences with patients in the advanced stages of progressive neurological illnesses. She has a terminal illness, and the outcome will eventually be the same whatever decisions are made. it's really a question of how you get the most quality out of what time is left. There will come a point when it will no longer be in her best interests to prolong her life with life sustaining treatments as it will not give her pleasure, only the opportunity to suffer. Did your sister in the past give you any idea of what she would want if she became this ill? It sounds from what you say that pulling her tube out may be the only way of expressing her wishes now (though I only have the very small amount of information you mention, and I have never met her and have no idea of her personality or wishes). I cannot speak highly enough of Samantha Pavey, I was fortunate enough to work with her for a short period of time. My heart goes out to you. My best wishes to you and your sister, my thoughts are with you both at this difficult time. MB

[Marcela-Hughes in reply to Vitruvian]

Thank you very much for your message. I understand what you say. In the past she mentioned she didn´t want to suffer and she didn´t want to depend on a machine. I know it is very difficult for her because she was a woman with a strong personality, very dinamic and very independent. Her life and her dreams were cut off as much as her independence.She never expected to have such an illness as this, never! This is why she spent a whole year going to different neurologists to see if she could find one with a less serious diagnosis, but all of them were different and in between those differences she had only one answer: a degenerative neurological illness. She refused to take the amantadine and l-dopa prescribed to her for one year, then when she decided to go back to the initial neurologist those medicines didn´t help her at all. She wanted me to save her from this horrible desease but I feel frustrated because there was nothing we could do and now I have to help her to decide whether she wants to carry-on with the PEG or not. The most difficult thing is remain calm and not being able to show her the pain that that decision causes me. I wrote to Samantha, I met her at one of the London support groups. Many, many, thanks for your answer.

Marcela.

[Vitruvian in reply to Marcela-Hughes]

She is lucky to have you as her sister.

[Hidden]

My mother, a PSP victim, has pulled out NG tubes, catheters, canulas and, eventually, the feeding tube. Whilst in hospital last year, the staff asked my permission for her to wear specially made mittens, fastened with velchro and, for her own good, I agreed. However, this was only for a short period whilst she was recovering from neck surgery.

I feel for you and your sister. PSP is a very cruel disease affecting not only the victim but families too.

[Marcela-Hughes in reply to Hidden]

Hi Jaygee

Thank you for helping me with your message. I am going to see what is possible to do to avoid pulling the PEG out, I´ll speak to my sister about it and I´ll follow her wishes, I´ll see if the mittens would help her. Many thanks for your thoughts. Marcela.