In my previous post, I mentioned a “G-Tube” (Gastric feeding tube) and I want to comment on that for a moment.
The lady at the restaurant told me about her neighbor who had reached a point in his Parkinsons journey where he couldn't swallow ….. so he had a G-Tube surgically placed for nourishment.
I mentioned to Beckie, (my wife) that if I ever reach that point, I DO NOT want to have a G-tube; I’d like you to understand why I feel that way. It all comes down to Palliative Sedation.
Ten years ago, in 2003, I was sitting with Bill (my best friend), his immediate family, Beckie and a lady from the local Hospice organization. We were in his living room listening to the Hospice representative carefully explain about palliative sedation.
Bill was seated in his wheelchair beside me. He’d had a G-tube inserted months before, through the skin, directly into his stomach. He had not been able to speak for quite some time, and the decision to place the G-Tube was made because he had such difficulty swallowing. Bill was near the end of a 6 year battle with ALS - a terminal illness also known as Lou Gehrig's Disease - and we were discussing hospice care.
At that point in time, I had not been diagnosed with Parkinson's - didn’t have a clue what was ahead for me. I thought I was healthy and just wanted to be there for Bill. I remember telling people that he was Moses and I was his Aaron - speaking for him as needed. We had reached the point where, most often by his body language and his eyes, I could tell what he was thinking and I knew he was very anxious about this particular gathering.
The lady from Hospice chose her words carefully, as each of us tried to grasp the meaning of what she was saying. "When we reach the point where Bill is very close to dying, and we know it's only a matter of days or hours," she continued, "and there is nothing else we can do for him, the least we can do is make him comfortable and not feel any pain. Once we put that in motion, however, it's final. He will be sedated and in a state of euphoria until he crosses over." I realized that basically they would put him into an induced sleep - feeling good - until his nourishment was depleted, which typically would only be a matter of days. He would not know anything after that fist injection.
There was a fly in the ointment, though. Bill had a G-tube...and according to Hospice protocol, Hospice personnel can only be involved when all other avenues have been exhausted. As such, a feeding tube disqualifies the patient because it constitutes life support - possibly extending his life for a very long time. The only way Hospice could step in would be for Bill to get rid of the G-tube. Bill wasn’t ready - at that moment - to go there, so it was a moot issue.
All of that background, hopefully, explains why I told Beckie that I didn't want a feeding tube; I just want to go when my time is up.
I realize that the issue is not a simple one. We could probably effectively argue both sides all night long...but that's my experience in a nutshell.
Oh yeah, on a lighter note, Bill and I would occasionally each have a beer together before he had the tube inserted. One afternoon, while visiting with him, G-tube intact, he indicated he wanted a Budweiser. I looked him in the eye and asked, " In there?" He nodded, with a big smile on his face. So……… I grabbed a 16-oz. can of that brown Kool-Aid, popped the top, put a funnel on the tube, and we took turns - a sip for me, a drip into the funnel for Bill...sip for me, drip for Bill...each time the beer hit the funnel I quipped, "THIS BUD'S FOR YOU!
"And that," as Paul Harvey used to say at the end of every broadcast, "is the rest of the story."