My dad had DBS just over two weeks ago now. He had the leads placed two weeks ago this past Friday, and then the battery placed this past Wednesday.
He has struggled mightily since the surgery. He seemed to have been in rapid decline since approximately April, and now we are at wits end as far as to where to go from here. In April/May he was getting up and letting the dog out, getting coffee started, breakfast for himself, etc.
Now, he cannot even sit up in bed by himself or get himself up to a sitting position to use the handheld urinal during the night. He has freezing and rigidity episodes which last hours a day, whereas before the surgery they tended to come on in the late afternoon/early evening. His attitude has changed completely as well. Prior to surgery, he was more...determined I would say. Now, it seems as if he's given up and has said quite a few times over the past couple of weeks "I can't do this, I can't live like this." We have removed the guns from the house so he doesn't have access to those.
We've begun turning up the voltage on the device, but that doesn't seem to do anything. We weren't given any specific instructions as to how to proceed (apart from the mechanics of using the system) other than "turn up the generator rather than give more pills." We weren't told how much to turn it up at one time, how much to go up in one day, etc.
I've tried to tell him to give the DBS time, explain that perhaps the surgery and all the anesthesia and pain meds had a negative effect on his symptoms and he needs to wait until he's recovered from surgery to really see what the DBS will be like. But I feel like I'm blowing smoke - I'm calling a home care agency to hire a caregiver, for at least the nights now. My mom can't hear him when he calls for her, and hurts herself trying to get him to a sitting position or up out of a chair.
We know that the DBS was not a cure, won't slow progression, etc., but we had at least hoped for a few more years where his QOL (and my mom's) would be improved. Is there a light at the end of this tunnel, or is this the beginning of "the end"?