Without A Voice

Tuesday, 10 October 2006

First day back to school and first day back to caregiving for Dad.

It was an uneventful day with the kids, as they were all excited to share about where they went for vacation, and all of my kindergartners were ready to be back at school, sharing that they read at home during break.

When I got to Dad's, I discovered that he didn't have a voice. Apparently, he hasn't had a voice all weekend. Sounding like a faint whisper, but barely audible, you have to hold your head at least a couple feet away from his face to understand him, or begin to read his lips. He has been having trouble breathing lately, and because he hasn't been using his Bi-Pap machine like he should, he hasn't been getting restful sleep and ends up with headaches during the day. He's now realizing that he should use the Bi-Pap at night during sleep.

This is the next stage of the disease.

Unfortunately, the children's books and the tape recorder are still sitting on the desk by his recliner chair. So it looks like we won't be able to record his voice for 'my own children' like we had planned.

Tonight was the ALS Support Group meeting at Queen's. The topic was apropos, Mechanical Ventilation: To Vent or Not To Vent. The respiratory therapists talked about the logistics of the machines, and then caregivers talked about their experiences with providing round-the-clock care for their loved ones. Many of our friends noticed that Dad's voice has gotten weak. Dad and Bernie talked to the respiratory therapist for awhile on how the ventilator works and all. Even though Dad is adamant that he does not want to be vented and go through a tracheostomy, I was happy to see that he was open to listening and finding out more information about the ventilator, which is much improved now with the advancement of technology these days (much lighter than a refrigerator and even portable now like a laptop).

Even so, it is difficult to see my father without the strength of his voice. That which used to yell down the basketball court, the baseball and soccer field when we were younger and that which used to yell at me when I was being my teenage stubborn self, is only a soft spoken one now. Even bathing was difficult today, as he started having panick attacks when I washed his hair and face. He can't hold his breath as long as he used to, so a few seconds of water is all he can handle.

Although we had to turn down the radio in the car to hear him speak, and we joked about how he can't argue with my stepmom anymore, he still has his mind, his thoughts, his sense of humor, and his memories. And, when I see him smile and laugh, that's all the comfort I need...even without a voice.