It's Getting Really Sad Here

It seems like Jim is wasting away. He was a little clear minded right before he went to bed last night, but he's been there for 14 hours and I can't get him to come awake. He got up 5 or 6 times during the night to use the bedside commode, but could only handle getting to it twice. I feel like we are at a hospice stage, but he still wants PT. I think the therapist may soon say Jim's not progressing so his work here is finished.

Patrick the private duty aide came in on Friday night. What a joy he is. He's an IT MBA student, works in IT at the local cable company, and is going to help with Jim 3 nights a week. He's maybe late 20s or early 30s, and is from Kenya. He did the entire food prep, cleaning, laundry list I left for him and didn't disturb Jim or me. I slept more soundly from midnight to 3 am that night than I had since Jim came home. Patrick handled Jim's toileting 5-6 times during the night. Thank you Patrick. Thank you Deb and Robin for pushing me there. Patrick comes again tonight.

I called some local friends, Barb and Buzz, yesterday to see whether they could watch Jim while I went to the pharmacy to pick up some things. They came to watch the Army/Navy game with Jim. They told me to stay away for 2 hours--to take a break--so I went down to a local watering hole where the friend (Liza) who does my house cleaning was tending bar. Saw lots of friends who are very concerned about us. Recruited one (Julie) to do a little Jim sitting from time to time.

Liza changed her house cleaning schedule to come in on Monday so that I can go to PT and take my wrecked car in for an estimate.

Buzz, Barb, and Julie all have been through the pain of caring for a family member with an end-stage disease. They understand what's going on here, and Buzz said that many of our friends are staying away because they think Jim won't know them and they are uncomfortable with that. Jim's has short-term memory problems, not long-term ones. He knew Buzz and Barb and was very pleasant with them.

The medicare-paid home health nurse and aide are very disappointing. The nurse has "signed out," I think I might have told you, and the aide was to come yesterday, but the scheduler gave her the records for the wrong client. When we finally got this straightened out about 11 am, the aide was 45 minutes away and Jim was in no mood to deal with a new person. So I cancelled. Then I came to find out they have scheduled Jim's aide next week the same mornings that I have already scheduled Patrick for private duty.

And the Delaware Hospice Tranisitions program, which was going to supply a Jim-sitting volunteer, is MIA.

Good news, a friend is coming this morning to finish raking the leaves out of my yard.

As Steph, who is going through demetia with her father, said this morning on the FDMB: "I don't really want to ask 'When will it all end?' Because I don't WANT it to end.. but I want all the major issues to end."