Yet Another Disaster Night

I could write a book filled with blog posts about disaster nights. These events, in and of themselves, tell clearly of the progressive nature of ALS and the precipitousness of the slope from able to unable. Most disaster nights involve either blood or feces or urine. Last night was not a trifecta. The best I could do is two out of three; blood was not one of them.

The event, in and of itself, was not particularly noteworthy, except perhaps for the massiveness of the cleanup required. The real element of memorability was the duration. The initiating event, the loss of a catheter, occurred at around 3:45 AM. The secondary event happened during the lengthy, 8 hour delay while I waited for help, around an hour before help finally arrived at 11:30 AM. My body decided it had waited long enough for its normal daily ablutions, and since one was happening, the other might as well happen too.

At the first incident, I called Alberta Health Services On-Call Night Support. There was no answer. I left a message. I called again at 4:30. There was no answer. I left a message. I called at 5:00. There was no answer. I left a message. Then I drifted off, awakening when the phone range at 6:00 AM. It was the AHS Night Nurse Coordinator calling to tell me there were no nurses on shift, that she would refer my call to the morning team arriving at 8:00 AM. Right there that would take me to 4 hours plus, and I know from experience that, thanks to weather and a holiday weekend, it would take at least a couple of hours for them to get to me after that.

So I waited, trying to sleep until 7:00 AM when my plan was to call CBI Home Care, the agency which provides my services. That's when I discovered that their telephone lines were either jammed or for some reason non-functional. So I tried, and tried, and tried, hoping to get through. That happened at about 8:00 AM, still my 4 hours in, and I received the same kind of information. There would be no HCA until my 10:30 AM regular appointment. It's the Easter long weekend, and there is a snowstorm outside.

So I lay there in bed, adding fuel to the fire beneath my body; liquid fuel. It was shortly thereafter that solid fuel decided to make an appearance. I continued to lay in the foul slurry beneath my butt, waiting for the magical hour when someone, anyone, would come to my aid. Ten-thirty came and went, as did eleven. Finally, at 11:30 AM, a caregiver arrived. She was new. She had never done either kind of catheter I needed. She knew nothing about my exercises and didn't have time for them in her schedule regardless. She was double-booked.

I looked at her. She looked at me, sniffing suspiciously. She ran to call a supervisor. Unfortunately the supervisor was an hour away. I needed cleaning. I needed cathetering. So she set to it, doing the best she could considering her inexperience and my inability to be patient given the circumstance. By this time the acid in my urine was beginning to burn my skin. I could feel it. It hurt.

It took almost an hour just to get me, and my bed, cleaned up. The damaged goods are in the laundry right now, almost dry. Next I have to wash my quilt, the one my Mom's quilting group made for me. It's not really that wet, more just damp, but it needs the washing. And finally there will be one last load for my regular clothing, including the pants I just peed into. That's right. The condom catheter put on my by the new caregiver failed on first usage. All told, I've been sitting in my own urine for pretty much 11 out of the last 12 hours.

This is why a live-in makes so much sense. Caregiver quality has very little to do with skills, and a lot to do with proximity. It should would have last night.