My wife Donna passed away yesterday morning in the ICU of the VA Hospital here in Portland.
Around the middle of August she started having regular diarrhea at every bowel movement. On Thursday the 5th there was some blood. On Saturday evening she passed a worrying amount of blood. We called the VA Nurse Line and after describing what was going on she recommended going to the Emergency Room. She was admitted and sent to a regular room. On Monday she aspirated just sipping some water and was promptly sent to the ICU. After two days in the ICU she was well enough to go to another regular room.
As if ALS wasn’t enough, what this was, was a severe flareup of her old friend Ulcerative Colitis. Since 2010 it was well managed on the drug called mesalamine. But with the increasing bulbar related symptoms she could no longer swallow that large pill. From there we were given a different formulation that was very small beads in a capsule that once opened and could be mixed into applesauce and other similar foods. Somewhere around the end of June she couldn’t swallow anything but small sips of liquids and those beads could not be administered via the G-Tube.
So, fast forward to September 7 and the fun starts. she was having diarrhea at minimum of 4, but mostly 6 times in a 24-hour period. To make things worse she was in so much belly pain that she had no way to predict when the out flow would start. This necessitated sitting in the poop for several minutes waiting for the nurse to change her bedding and her clothing and wipe everything down with cleaning wipe. To accomplish this, she needed to lean on her side, then roll back to the other side and back again to her side before being able to get settled back in the bed. No matter how much she tried, she (and me too, as I spent almost the days and night with in the room with her) would have to instruct them that she couldn’t be laid flat or her lung secretions would pool and make her susceptible to aspiration.
Well sure enough, midday on Sunday the 22nd she aspirated again during a clean-up. It took the respiratory team about an hour using cough assist and manual percussive pounding to settle her down enough to be moved to the ICU for a second time. Once she was in the bed and the lead doctor came in to outline what they were going to be doing to get her better enough to go back to a regular room she took out het yellow legal pad and wrote, “Please let me die!”
He hemmed and said, “Are you sure?” and she shook her head yes. I explained to him that we had had several conversations on this matter and both Donna and I agreed that we were comfortable with the course of action of letting her go once this because more than she could handle. And she would be fine saying yes about me dying if the shoe was somehow on my foot. They could also see the POLST in file that stated comfort measures only. So that afternoon they gave her some strong pain meds and something for anxiety, basically a low level medically induced coma. Later that day they started a small morphine drip and whenever needed, increasing the amount slightly she got whenever she would grunt and twitch.
Around eleven Monday morning I told Donna that I needed to head home to wash clothes. I was on the second wear of my clothes and need a shower, plus, I needed to get several more days of my prescriptions. She of course didn’t react in any way.
I was just out of the shower at hone and waiting for the clothes to finish in the dryer when my phone rang, the Caller ID read “VA Hospital” and I already knew what it was — Donna was gone. I’m betting she did hear me and gave up then to spare me from having to witness her die while I was in the room holding her hand. She is in a better place and for right now I’m dealing with the loss okay. Ask me again in a couple weeks.
