kitkat
Member
- Joined
- Nov 9, 2015
- Messages
- 21
- Reason
- Lost a loved one
- Diagnosis
- 11/2015
- Country
- US
- State
- MN
- City
- Fairmont
My PALS finally received his PWC a couple weeks ago. He should have received it almost a year ago, but miscommunications & ball dropping happened. It is set up with a head array so he can drive it, and a joystick in the back so I can drive it. Unfortunately, his neck has gotten so weak, he is not able to use the head array. There goes a little independence.
He has no use of arms, legs, and his trunk is very weak as well as his neck. Eating is a scary process as swallowing has become difficult. He does not want a PEG. He has a VC of 31%, and does not want a vent. This is all in his advance directive..
He has decided he will quit eating and drinking when he feels it is time. While it is heartbreaking, I will abide by his wishes. Our children are also honoring his wishes and not trying to talk him into something he does not want.
Does anyone have experience with their PALS not eating and drinking? Any advice?
We currently have a home health aid with him while I am at work.
Thank you so much-
Kathy
He has no use of arms, legs, and his trunk is very weak as well as his neck. Eating is a scary process as swallowing has become difficult. He does not want a PEG. He has a VC of 31%, and does not want a vent. This is all in his advance directive..
He has decided he will quit eating and drinking when he feels it is time. While it is heartbreaking, I will abide by his wishes. Our children are also honoring his wishes and not trying to talk him into something he does not want.
Does anyone have experience with their PALS not eating and drinking? Any advice?
We currently have a home health aid with him while I am at work.
Thank you so much-
Kathy