Without a Voice

Monday, 9 April 2007

Garry, Dad's coworker from the Parks, came over and visited during lunch with Dad. Cione, the respiratory therapist, came over to adjust the bi-pap setting. He spent awhile trying to adjust the inspiration (inhale) and exhalation (exhale). He changed it from 16/8 to 20/7 so now the range is larger now, which means Dad's lungs will be expanded more. But, Dad had virtually no voice all day since last night.

Even after the setting was changed, Dad still had trouble all night getting used to the pressure and communicating with us. It's a good thing that I'm sured to reading his lips and his expressions and his eyes. Even when Chris sit next to him and help him with the crossword puzzle, I would glance at Dad's face from afar when he seemed frustrated and "translate" for him. 'He wants 114 down,' or 'He wants you to move his head to the right and put the towel under the pillow so his head won't lean to the left.' Even Paul, the Hospice volunteer, who came from 6:30 to 8:30 pm, had trouble understanding Dad tonight.

Jay helped set up the voice computer program. We had first played around with it months ago, when we were first introduced to it, but now we'll have to rely on it more if Dad's voice stays like this. Occassionally, his voice will be audible, but usually it's only a word here or there. Perhaps he's still getting used to transitioning from a lower pressure to a higher pressure on his bi-pap, or perhaps his lungs and his muscles just don't have the strength anymore. Often, I tell him to not worry about speaking in complete sentences as I don't want him to strain his voice and his energy. We'll need to turn to other devices now.

The tricky part is sleeping now, not only for him, but for us. Jay slept out on the couch near him. I woke up a few times during the night when Dad depressed the doorbell, but most times, Jay would be up, with the living room light on, trying to read Dad's lips and figuring out what he wanted. We need to look into getting a better signal device, like a head buzzer I know of that some ALS patients have.

Caregiving and visiting with Dad may get a little trickier now, as he'll have to rely on technology and lip reading to communicate his needs.