In an effort to balance the demands of the paying gig for the PAX and ensure consistent visits to Dufresne, YHC amended the schedule for #Hopebuilder to 5:00 pm on Tuesdays, Thursdays, and Fridays. While that’s the schedule, the PAX are encouraged to come by whenever they can. As MDufresne shared, anytime is good for a visit.
YHC arrived to find a new Alabama license plate among those of Dufresne’s out of town family in the driveway. This one belonged to Square Toe. YHC greeted Cee-Lo and Square Toe and in we went, VSF planted in the front yard. Cinderella had posted earlier in the afternoon and reported that Dufresne was unresponsive during the visit. The PAX visited with Dufresne’s family while MDufresne gave Pack Man a heads up that Square Toe was on the premises. Murse Chris let us know that it had been a tough week for Dufresne, but his vitals were stable. We headed upstairs greeted Dufresne and launched into stories from Alabama, Dufresne’s home state. Square Toe flashed the national championship bling for Dufresne with more stories and chatter about events on the horizon. Cee-Lo closed us in prayer. YHC let Dufresne know we’d be back tomorrow. Next up for Square Toe was some quality time in the backyard with Pack Man (Dufresne’s 2.0). Pack Man and his friends were having a large time on the trampoline assembled by @F3Raleigh a few months back (Countrywide – you do good work!). Maize arrived as YHC was headed out to keep the train of visitors from @F3Raleigh going strong.
MDufresne shared a CaringBridge.org journal post Tuesday evening letting everyone know that Hospice has been called in to provide additional support to Dufresne and the family. While this is a difficult and painful step for those who know and love Dufresne, YHC is grateful MDufresne and the 2.0s are getting additional support. There’s no more important time for community and fellowship than now.
We have had more or less stable days over the past many with Jim having fewer periods of intense swings and pain periods. Still, they can come with very high heart rates that once they get in the 125s are hard to get back down, but overall it does seem like there are fewer of them then there used to be. Jim has been visited by several people – his cousin Emily from Tennessee, his sister Prissy and niece Elizabeth (and our great nephew baby Nathan), friends Judy and Joe Harrison from Alabama, local friends – the kind exercise men who are still coming regularly, church friends, and long-time friends and some prayer warriors/healing advocates. I know it is probably hard on some of the visitors as Jim is really very unable to respond these days, but I know Jim is still very much in there. When he does have windows of alertness it is clear he is Jim and is able to respond appropriately, crack a smile/smirk every once in awhile, and shed a tear or two as well.
I ended up calling in Hospice. Even though we have great nurses and help 24/7 I had called Hospice to make a counseling appointment for the kids. Then our nursing agency mentioned Hospice for this reason as well as some other social work reasons and helped secure a group that would allow for ventilators and feeding tubes (which of course Jim has, but not all Hospice groups will take on). They came over last week and stayed for 3 hours trying to understand the situation and giving me my first mini-therapy session too. Today the chaplain came for a visit and then spent time with Jim’s mom Patricia too who is still with us. Hospice has been nice to help get Jim’s medications here quickly and delivered to our door (who knew??) as well as offering help with other logistical needs and items. I canceled the original therapy session I scheduled with the kids (which was at another Hospice group) and now this current group is going to send their counselor to the house to work with the kids next week. That way the kids will be in their own environment and hopefully more comfortable with expressing themselves.
In general, Jim is sleeping/resting a lot. I estimated for Hospice since they asked maybe 18 hours a day. It is hard to know for sure. Sometimes he sleeps with his eyes halfway open and sometimes when his vitals are really low and you think he’s sleeping, you walk past him and his eyes pop open. His digestive system is slowing down too so he is not eating as much as he had been – some of this is the disease progression and some of it has to do with the heavy medications. The doctor did increase his morphine dosage some more as it seemed to the nurses that he needed that. I do think it has made a positive improvement. Prior to this change there were several nights that Jim struggled to really sleep at all. It seems like his nights are so much better now although I know that overall he is not sleeping as well as he used to.