Small Changes on this Path

As soon as we settle into a pattern, Roy, just being Roy, adjusts our trajectory. He’s no longer cycling between “boiling” and cold in his perception of the temperature – he’s somewhat cool on his feet and hands and just warm on his back (plastic covered mattress, plastic pressure pad, plus plastic bed pad = trapped body heat). He says his feet are warm but they are cool to the touch. This is normal. We’ve put away the extra fan and are no longer bundling up quite so much in the arctic air conditioning.

Roy is having more difficulty using his hands – the tremors have increased which is part of the ammonia build-up, and he says he cannot grasp things as well. He is switching from using insulated cups with built-in straws to wanting the squishier plastic coke bottles with flexi straws which are more comfortable for him to hold. He’s needing a bit more help eating as his perception of where his fork/spoon should go and where his mouth is are slightly ajar. He can no longer move his legs much without help. He has found a comfortable sleeping posture so he is actually sleeping a bit more. He has decided to forego a few of his pre-hospice medications and has remarked that this seems to be taking a bit longer than he thought it would. However, he intends to as he puts it, “let nature take its course.” Roy is still enjoying drumsticks and Fresca. He has his spa time with the hospice aides on weekdays.

For those who have asked him if he has unfinished business delaying his departure, he has baldly stated that he is not that deep. He has prepared and is already going in his mind, it’s just his body that needs to catch up to the planned program. He said last night that he thought he was going toward the light. I asked him what color it was and he reports it is a soft yellow-green. Maybe that’s like a fresh spring morning in the garden?

One of our aides Hannah had to handle an odd occurrence on Friday night. I was making a quick run to Walmart for items Roy wanted, when the assumed-to-be benign safety precaution of a fire extinguisher under the kitchen sink exploded. Roy said it was like a gunshot in the kitchen. Hannah had it all cleaned up before I got back. The company has been contacted with photos and information provided. The top of the canister blew out like someone inside flew open some shutters. Luckily nobody was hurt (just frightened) or damage done to other items. Roy said it was like the time the squirrel made the transformer blow outside but louder.

Roy had a somewhat busy weekend with visits, FaceTime and telephone calls. On Saturday, Karen and Mary Ann brought some potato leek soup and sourdough that he enjoyed and he had a visit with Kevin. Leslie and Dan brought some bluebells that are gracing the counter top and we picked at the puzzle a bit. He had a chat with Christine and Kennedy on FaceTime, too. On Sunday, Roy had visits with Don, Terri, and Russ with a late night chat by phone with his cousin Chris. He also had a good phone call with Pastor Dan.

For a bit of self-care, I had a field trip to have a massage which I like to do every few weeks on Saturday and then on Sunday got to go to church. That was a little hard, because a lot has changed in our lives while I was away, but also very good – people mostly gave me lots of hugs. Afterward, I went with friends for lunch and had some yummy mole chicken enchiladas. Later on, I played him the anthem the choir sang yesterday during the service from YouTube, I Choose Love, and he enjoyed it very much. They nearly did me in with their beautiful voices but it also fed my soul and his.

The house is kept fairly cool and the TV room dim. He’s sleeping deeply enough that he is not awakened by kitchen noise at this time. His blood pressure is getting lower and he reports that it is hard to keep his eyelids up at times. I am watching, and waiting with him, and holding his hand.