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mysticunicorn66

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Nov 20, 2008
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242
Reason
Loved one DX
Country
US
State
MD
City
Allegany County
My sister was devastated when she talked to the hospice nurse about a feeding tube because she is having greater difficulty swallowing. Due to the fact that my sister is not able to tolerate being in a sitting position because it is too painful, the hospice nurse explained to her that because she is in a laying down position that she runs a high risk of the feeding tube contents going back up esophagus and into her lungs=pneumonia. My sister is struggling with this situation. My question is for all CALS who have faced a similar situation and have made it through this storm. If my sister is still breathing, but can no longer eat/drink and feeding tube is not a helpful option, how can I make her comfortable in the light of these circumstances?
 
I suggest calling hospice to come out and evaluate. They can make your sister comfortable and are not the "six months until end or less" anymore. I began with hospice in April. I've read they can handle no peg issues well.
Ann
 
Oh Yikes! I was way too quick to answer... "Your hospice nurse told you..." Will this nurse be taking the question to a staff meeting to find out what can be done?
 
I had called the hospice nurse. I had to go in to work today. They said that they could make her comfortable when that time comes. But, she told me that they don't stay there 24/7. My dilemma is that I am having a hard time finding sitters in my area who are familiar with the difficulties faced by ALS patients. Heck, the ambulance crew was trying to get her to her feet to put her in a stair chair. I screamed at them that she could not bear weight at all. Anyway, I talked to the hospice nurse on the phone to see if they have a list of sitters who are familiar with difficulties that ALS patients have and can help my sister deal with some of these issues. I need back up coverage for my Dad because he just cannot wrap his brain around what is happening and lives with her.
 
I know hospice will use drugs to keep my husband comfortable during that time. I don't worry about that.
 
i don't worry about it either, but she lives with our elderly father. i know i am going to have to call on hospice people to talk to him. when she can't swallow and PEG tube is very high risk to her because she can't sit up, he's gonna have a very hard time understanding that this is what she wants. I'm afraid he will see it as " starving her" or something. Both hospice nurse and I asked her yesterday and sis said she doesn't want a PEG at this time. she remembers having pleurisy before and said if pneumonia hurts as bad as it...no thanks.
 
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