No significant changes, but definite steady decline. With the help of hospice, we've been adjusting medications for his comfort. The shortness of breath is constant, as is the restlessness. It's taking a combination of medications to help. The meds seem to help, but when the symptoms are controlled, he gets pretty sleepy. It's hard to see him winded and anxious, but I have to say that it's pretty hard to see him really sleepy too. His last couple of nights have been a little bit better, and he seemed to rest better last night. It has to be an awful feeling to not be able to sleep at night. I would say that he is weaker overall, and the swallowing is getting dramatically worse. We have suction available to help with secretions, and he uses the cough assist machine.
As I said before, the loss of his ability to speak is heartbreaking. He is able to write short notes, when we aren't able to figure out what he wants. It's hard for us, and harder for him. We miss his voice so much already.
This awful disease is relentless.
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