PSP Association
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Need Advice

Ok so I took Aunt Bev into the emergency room Monday because she was having more trouble than usual they did can scan or MRI and chest exray, some flem but no phonima they put a feeding tube up her nose she hates it and wants to come home I kinda got in a spiff with the lady doc (she was quite the bitch) I told her what bev told me and she say oh no she cant go home she is going to just keep coming back with phonima over and over she can no longer swallow besides she has phonima I said well thats not what I was told 2 days ago and yesterday I thought that is why you put the feeding tube in her nose so she wouldn't get it so tell me how does that happen then they call me last night and said they had to move her they did a nose swave and she now how MRSA where the hell did she get that anyway after doc lecture I left her a lone to do some thinking get feeding tube or just do it your way hopefuly when I go in she has decided one way or the other she loves her food and sweets can comeone please tell me what it is like for them to be stuck in bed with a feeding tube and the only thing in life left is the lifetime channel I am having such a hard time with what to do I just want her to stay on this earth so I can drive her crazy I have never been faced with something this hard , stressful and heartbreaking at the same time thanks for letting me vent (oh ya and that doc she aint seen bitch)

14 Replies

Hi Kryste

Sorry to hear that you are having such a hard time. Maybe aunt Bev would be better off with a PEG fitted. This is a feeding tube fitted through the stomach. It's easy to manage, either with a drip feed for several hours a day, or you can inject special liquid food through the tube. I did this and we had no complications. Aunt Bev can continue to eat whatever she wants as long as it is possible. There are different opinions about this PEG, you will need to collect as much information on for/against it as possible before making a decision.

Take care, love maddy

1 like

Thank you so much


I'm so sorry your aunt now has MRSA. PSP is bad enough without further complications. I presume she will be in hospital for a while now. I would think a PEG would be better than a tube in the nose. They wouldn't fit one in my husband yet as he is not losing weight and can eat liquidized meals without too much trouble but as soon as things change he will have one.

I hope your Aunt gets over the MRSA.

Best wishes.

Nanna B


Many people have the MRSA bug in their noses or other damp places . That's why they do swabs. It is usually harmless to that person but the germ can pass to others so carrier person is sometimes isolated. Has she been given anything? It does not meet she will become more ill. MRSA is most dangerous when it enters open wounds.

*mean not meet! Can't seem to correct.


Madeline took the nose tube out herself day one....she has a PEG,has had for the last 3 years,no problems at all,I keep one spare on hand and do a change in 5 minutes when it comes out,best regards,Rollie


PS you will also need a suction machine..very important,Rollie


Hospitals are very dangerous places for sick people! I found that staff were not prepared to devote the time that is necessary to feed or toilet people with PSP. When mum went to stay at a hospice for a week while I went away, I returned to find they had catheterized her, they had also decided her swallow was unsafe, so had stopped feeding her altogether! I was livid. I got her home, and into hospital for a PEG. I lived in the hospital with her as her main carer for the 3 weeks we were there recovering from the PEG op, as well as the hospital acquired C. Difficile. I am so very glad I was able to stay at her side to nurse her as I had always done. She could not have attracted the attention of the nurses, her needs would not have been met. The nursing staff would not have been prepared to take the time that toileting, moving or nourishing required. Neither did they seem to consider the fact that her mind still functioned well, and she needed stimulation. I know it is tempting to think your loved ones are in a "safe place" in hospital, but it just ain't so. Because of their reluctance to devote the time to regularly move the patient, pneumonia is more likely to set in, and you can't trust a hospital to treat a patient with PSP for pneumonia. Stand firm Kryste. You probably know your patient better than they do.

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hi kryste

auntBev is certainly going thro it at the moment







Excuse me, what is phonima?


First, don't let the medical people bully you!! You are in charge, not them. I personally know of a PSP patient who was on a feeding tube for three years. At times she would shout "Die, Die, Die" which led the caregiver to believe that she wanted to die and not be on the feeding that was keeping her alive. My wife passed on in May of this year with PSP. She didn't want a feeding tube. She felt that it would keep her captive in a non-functioning body. However, everyone has to make that decision themselves. There are no right or wrong choices but only the choice the patient wishes to make. If you go to the site they have an excellent video on all that a PEG feeding tube is about, both pro and con are presented. Good luck!! Jimbo


Thank you jim i will go watch the video right now I just want her to live but it is such a hard choise.


Jim I could not find where to click so i went to you tube you mean it wont be like now where she is hooked up to machine I thought she would be constantly hooked up to some electical machine like the one in her nose The man I watched was talking and going on day to day is that really how it is? it did not show if she could like suck on a sucker I have an image in my mind that she will never be able to put anything in her mouth again Maybe I am over tired thank you for your help


Hi Kryste,

It's so frustrating to see a loved one in this state. My mom had to get a feeding tube as she got a slight lung infection and with all the coughing, eating was proving to be more of a problem for her. Unfortunately once u put the patient on a feeding tube, getting them back to normal eating is a tough task as the risk of lung infection always looms large.

Its been more than a month for my mom and we keep asking the doc and he doesn't give us a full approval to remove it. But he did mention that try feeding a few teaspoons thru the mouth while feeding tube is in and if she doesn't cough too much, then the tube can be removed.

All this requires time and patience on part of the caregiver, in our case my dad the main caregiver doesn't have any more fight left in him and e is waitin for me to visit and then try to get the tube out. My poor mom doesn't have any power to signal if she wants the tube or not.. She just lays there with a bed sore, a catheter and a tube in her nose.

Hope I find a solution soon,

God bless,



Thank you its so hard for her to figure it out will she live longer with the tube i wonder


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