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lisaohgee

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My mom is pretty much completely unable to move anything -- if she tilts her head back, she needs it tilted back forward. She can't move her arms, legs, etc.

She got a feeding tube in September. She will not use it. She still tries to eat normally, but she is having trouble swallowing. Her caretaker wants her to use the feeding tube, because she is extremely worried about her choking. My mom will not. She's down to 93 pounds.

I would have fully supported her not getting the feeding tube if she didn't want it. But to get it and not use it baffles me. She "says" she wants to live, yet she hasn't done anything she could to help prolong her life (bi-pap, feeding tube, etc.). It is obvious she is malnourished because she is losing teeth and she just looks malnourished.

I got a living will and power of attorney done for her, because she and my step dad have been in complete denial. I really hope they will actually sign it.

I don't know what I want out of this post. I just wanted to tell someone who might understand.
 
sounds like she is not ready to admit to herself that she needs it , maybe you could try just using a vitamin juice she wont like the flavor of and use that to your advantage so she wont have to tast it ... it may be worth a try then she will see how it works and be o.k. with it ... don't know if she change her mind but , she sounds like a strong woman with big independence ... wishing you the best
 
Dear Lisa,
I undrstand very well what you are going through; my Mum passed over with MND not long time ago. She never wanted to have a tube fitted but eventually agreed to it as feeding became extremely difficult. She passed away a day before the operation was due.
It is very difficult to force you Mum to use the tube. It is so frightening to have a whole made in your body. Perhaps if she tried a few times she would accept it. In the meantime, maybe you could use Ensure Plus milkshake. It contains lots of vitamines, minerals, some proteins and carbohydrates. She would need about 5 a day if this was to replace any other food, which she cannot have anyway. These drinks are quite expensive but she should get them on prescription (hospital nutritionist should make a recomendation). We used to give it our Mum just with a teaspoon, very slowly. Most of it used to spill but she was at least getting some. One just needs to be very patient and not rush while doing the feeding.
We were desparately trying to prolong our Mum's life but when I look back now, I think we should have followed more what our Mum's wishes were. There was no point to force her to have PeG or to use BiPap, which she hated.
Wishing you best Lisa,
Julia
 
I'm a grandma and my 2 kids are hundreds and thousands miles away so they can't force me to do anything. I have a power of attorney signed by my sister and she's in total agreement with me. I still have power in my arms but my legs are noodles. I've had ALS for almost 3 years. You can't imagine the fear I have when I'm paralyzed. I'm not getting a PEG or using a bipap or a ventilator. You can't save a person's life when they have ALS. We're all going to die. I own my body and I have a right not to drag out this crappy disease. I don't want to live with ALS for a minute, much less this much time. I hate it and that's not just lip service like most ALSers give. I try to go to sleep in the afternoons so I can escape the tedium and silence around here. That way I can escape worrying about how I'll die. It's cool if I can go to sleep. Please think of your mother's wishes and respect them. And think what it be like if you had a fatal disease. Empathy is what you need.And if you lack that, how about mercy?

Carol
 
My husband got the PEG in July. He is just starting to need it, but won't use it either. He does use the BiPaP machine because it makes him so much more comfortable when he sleeps. He had a CPaP before the ALS diagnosis, so that wasn't a real change. My husband won't sign a Power of Attorney, Living Will or Advanced Directive. Currently, he has no use of his arms or hands - he can move two fingers slightly. His voice is gone, and he can only stand for transfers. He is in complete denial.
 
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