CharlieFox
New member
- Joined
- Jan 3, 2012
- Messages
- 4
- Reason
- CALS
- Diagnosis
- 04/2011
- Country
- US
- State
- Illinois
- City
- St.Jacob
This is my first time posting. My Dad has ALS, he is on a ventilator, we have been home on hospice since September 2011. We used to have an ECU ( environmental control unit) for him that could control the tv, light, radio, bed and nurse call at the touch of a button. About two weeks ago, my dads fingers stopped being able to push down hard enough to press the button. It is nearly impossible for him to form words with his lips. Now I ask him yes or no questions and put my hands, he looks at the left hand if his answer is 'yes' and the right hand if the answer is 'no.' I worry about him not being able to get our attention at all! We have a communication guy who is willing to order anything to try for him to use but I'm not sure where to turn. Does anyone know someone locked-in that have a special device that I have not seen? My dad is totally aware and I feel awful that he has to lay there and wait in silence! I understand him having functions of everything he had with the ICU is a stretch, but is there at least a way for him to do a nurse call?
He already has a Dynovox computer, but it has to be positioned right in front of his face, so he's not able to watch tv or look at anything else if it's in front of him. His eyes work well but they get very watery and he get tired of trying to type of the computer after just 10 minutes or so. Most the time he is so exhausted from calibrating the eye gaze that he doesn't want to type anything.
We also tried the sip/puff button. It's a straw the goes in the mouth that connects to the ICU. However, my dad is on a ventilator so he has no control of his breathing in and out of his mouth and jaw and lips are too weak to make the seal around the straw tight.
I feel like his doctors are surprised he is still alive and that nobody realized we would make it this far. Dad still enjoys being alive and wants to stay around for awhile ( two months ago he said he'd like to live at least a year!) Can anybody give me any idea of how to help him?
He already has a Dynovox computer, but it has to be positioned right in front of his face, so he's not able to watch tv or look at anything else if it's in front of him. His eyes work well but they get very watery and he get tired of trying to type of the computer after just 10 minutes or so. Most the time he is so exhausted from calibrating the eye gaze that he doesn't want to type anything.
We also tried the sip/puff button. It's a straw the goes in the mouth that connects to the ICU. However, my dad is on a ventilator so he has no control of his breathing in and out of his mouth and jaw and lips are too weak to make the seal around the straw tight.
I feel like his doctors are surprised he is still alive and that nobody realized we would make it this far. Dad still enjoys being alive and wants to stay around for awhile ( two months ago he said he'd like to live at least a year!) Can anybody give me any idea of how to help him?