Sooo Confused

[bleonard4]

I need any help in understanding that I can get. My sister was diagnosed in June 2009. She has gone down hill very quickly and we think she is nearing the end. She requested to go into a Hospice facility. We believe she was under the impression that she would go in there, they would start an IV and she would just go to sleep. Her doctor explained that this would not happen, but rather their job was to make her as comfortable as possible. She then requested to go back home. The doctor told her and her family that she needed to get her pain under control. They were going to change her from morphine (which was making her hallucinate) to Methadone. She requested no more nutrition and went 9 days without a tube feed and minimal water only to give medications. She remains in a hospice facility and the plan is to try to send her home by Friday if they can get her pain under control and the medications straight. I found out yesterday that after 9 days of nothing but meds through her g-tube that she requested a feeding. I am okay with that if that is what she really wants but how is her family supposed to know if she is still thinking straight. She was very strong in her conviction to go into Hospice care....actually against her family's wishes but she went anyway. Now it seems like she still wants to live. I don't know if any of you have gone through something like this but I just am really at a loss. Could this be some kind of dementia and if so how do you not give her nutrition if she asks for it?
Thanks for any help you can give me in understanding this horrible disease.
Barb

 

[dldred]

Barb,

Is she able to communicate ? Has she actually told someone of her wishes? Does she have a living will ? Maybe after 9 days of no feedings the pain and hunger go to be too much and she decided that she was going to try to go on. It is really hard to say. The only thing you can do is to be there to support whatever decision she makes and let her know she is loved. I guess a doctor would have to decide if she is mentally sound to make the decision of refusing the feedings. It is a hard road for you and for her, please know we are here for you always.

Dana

 

[abbas child]

According to my reading the body rejects food and water when dying is near, and shouldn't be forced. Your sister may have thought it would be easy now, as Dana implied, but has changed her mind now that she understands Hospice better. I agree--ask her if she'd like to be fed. I imagine she's had a huge disappointment in learning Hospice is not there to do what she wanted. Best wishes as you fight on!

 

[jwife]

I can only say that I am so sorry for the pain you sister is in and the suffering for your family as you watch her struggle. Thoughts and prayers are with you all!

 

[notme]

If she wants to be fed through the PEG--then my thoughts would be to feed her. Starving to death is not a pleasant way to go and can take literally monhths. When she is in later stages of the disease--there are other things that can be done to keep her comfortable.

She can be comfortable up to and including when her breathing becomes an issue. For now, I'd try to make her as comfortable as possible.

 

[kmendsley]

Starving is definately not the way to go. If she was that close to dying usually the body doesn't want fluid or meals anyway...so if she is hungry that is a good sign that she still has a bit to go! Don't deny her food even if you think it is dementia speaking because that could definately get you in a sticky situation if she ended up passing from starvation than from the disease. Good luck to you and your sis!