It seemed like the phone and doorbell never stopped ringing today. We met Ed's regular weekday hospice nurse and social worker, plus the supervisor from "Right at Home" came by. They each talked with us about Ed's condition and how they can best serve our needs. While I was sometimes displeased with some of the hospice hospital team, Ed's home team seems right on top of things. In particular, the nurse, Karen, had some insights into some of his behavior. She says the fingering of the bed linens and his shirt is an outward manifestation that his mind and spirit know and feel that he still has some things he wants to do, but his body is too weak to physically do them, so he gets agitated. She suggested that the hospice chaplain could help with this, even if Ed doesn't talk but just listens. The chaplain can put him at ease about letting go. I have been trying to think of the things he said during the last few good weeks that he wanted to accomplish; perhaps if I can get some of those done and tell him they're done, he'll feel better. Otherwise, the nurse identified which of his many medications to give him when he is agitated.
The stock of medications is overwhelming. We began at home with everything in pill or caplet form, but today Ed had some real trouble swallowing, so the hospice nurse re-called several of the prescriptions in to the pharmacy to get them in liquid or suppository form (and isn't Ed going to love those suppositories!). So now we have a kitchen counter area covered in medicine bottles, some of which we will probably never use again. At least the cost is all covered by hospice (i.e., Medicare's 100% coverage of hospice services).
Sherry flew in from St. Louis tonight and will stay a few days. Becky cooked for us all again tonight, and Judi and Debbie and Annie were all here, too. Ed pretty much ignored all of us most of the day but he seemed tickled by the social worker's compliments on his beautiful smile. Yes, he talks with the new people we are meeting more than with us, but Karen says that he is conserving his energy to use in just such situations as meeting everyone because he hears and understands everything we are saying to him and to each other, therefore he prepares himself for the next arriving person.
As I said above, I like Karen. She listens and questions and tries to piece things together so that things make sense to us. She trusts us to be observant and acknowledges that I know Ed better than anyone. She planned to call Dr. Mitchell, Ed's oncologist, to develop a plan for control of increasing pain that does not rely on just increasing doses of Roxanol (morphine sulfate) since she doesn't want him developing the rash again or having any of the other side effects he has had from narcotics.
It's been another exhausting day--even my chiropractor gave me more of a workout in this morning's visit. I hope for a few moments of relaxation over the weekend.
