Brian has made a series of choices along the way based on the thought that he has never wanted to be around long as a disabled person or see ALS anywhere near through to a natural end.
Now with the Gapapentin (for Neuropathy), the Lorazapam(for sleep, anxiety, restlessness...) he started this week and the Morphine he was already using he really feels checked out.
Butt pain from the bowel issues (which are being treated with large doses of Senna and daily Miralax) and the foot pain from the Neuropathy, along with the bowel issues themselves and just even having an indwelling cathader have been game changers for sure. We took another step closer to the end this past week in a big way.
I think a big difference between Brian and some PALS is that while others have sought ways to learn be with disability, Brian was thinking on Veritas in Switzerland Versus VSED at home. His attitude from the day of diagnosis was that he would hang out for only so long.
I am not criticizing that, and I have not encouraged or discouraged it except to remind him that he was never a burden to me and I would do anything legal that he wished. I really have given myself to his choices in this situation.
I shared opinions along the way, like morphine getting started too soon, like wanting him to have a power chair, like thinking maybe Hospice involvement was actually hastening his demise. They come in with their medications and Medicare won’t pay for Rilutek Any longer and the nurse says it’s pointless to keep taking vitamins. A POLST is on the fridge, and it’s DNR/DNI. The game changes.
I figure Brian won’t opt for VSED until the November elections, but he may well at this rate right after.
We actually had a good first year, he progressed slowly. Then Rilutek and appendicitis and the hospital changed a lot, but still the time before Hospice came in felt like the end might be a ways off. Then Hospice, lots of help but a clear change in tone. Now all of this.
I honestly think the bowel and bladder issues were likely caused by Morphine not ALS, but no matter because the Morphine stays. I don’t even know what to say on all that Neuropathy in his feet, first just the left and now the right. What a wretched disease. At least he still cares about politics when he is awake.