How About a Day Without an Obstacle? (by V)

Sunday, Jim (after being advised by one of the nurses that it was his right), refused a dosage of Lactulose, the laxative that is the ammonia binder. When I heard about this, I called the nurses desk and asked to get a meeting with the facility DR. The person on the phone put me on with the Director of Nursing, Debbie, who seemed to have the sole purpose of keeping me from the DR. When she found out about the missed Lactulose, she started saying things like Jim is in "end-stage liver disease," is "terminal," and "will never be released outside of this or some similar facility."

Well little bitch Mama Venita went ballistic. Never has a DR said these things to us. I insisted more that Jim and I speak with the DR, which neither of us has since he was sent to Shipley 10 days ago. Debbie said she would do her best to make that happen on Monday, and I got off the phone, called Jim, and relayed the info to him. During our conversation, Debbie entered his room, started talking with him, told him I was lying, took the phone from his hand, and insisted to me that she had never said those things to me. I told her I was finished talking with her, but she wouldn't give me Jim back, so I hung up.

Jim called back shortly. He had suggested to Debbie that she was out of control and should go home. She said she was going to do that, but spent ~40 minutes outside his room ranting to staff about the situation. His room nurse came in later and told Jim that they were working on getting the DR to call me at 10am on Monday. I showed up in Jim's room with a pizza ~8 pm and stayed there watching him until 4 am.

(This facility's weekend care level is abysmal. Jim had asked for dinner to have a hot dog, french fries, and orange juice. They sent him fries and juice, with a note that there were "no hot dogs in the house." My. Couldn't they have asked him if he wanted something else they did have? The last cup of water he was given--they date the cups--was the 11-7 shift on Friday night.)

I got to Jim's room today ~9:15 am and got a call from the DR's nurse practitioner shortly after that. She explained that we misunderstand the nature of nursing home care. It is not their job to provide medical care; Jim was released from the hospital at an appropriate level of "wellness" and the job of the facility's nursing staff is to do their best to maintain him at that level. The primary purpose of the nursing home is to provide rehab to allow the already medically stable patient to return home (if that's the case) or to "warehouse" the terminal patient. She did not speak to the issue of Jim's diagnosis or prognosis, but then she didn't have his chart there.

Today's RN floor supervisor listened to my part of this conversation. She asked where I got the notion of end-stage and terminal. I said I would not name names but that it came from their nursing staff. She went to get Jim's chart. She came back and said she had just had a chat with Debbie (Director of Nursing, remember) and that there was nothing in Jim's chart about end stage or terminal, and that Debbie said she told us both yesterday that Jim is NOT end stage or terminal (yet another change of story). (Jim, who often can't keep his mouth closed in sensitive situations, told the floor supervisor that it was Debbie who told us this.)

Man, is this getting long. I'm venting.

Around 11 am, I went to see Dr. Boob. He said I'm healing well, but the drain still isn't ready to come out.

After that, I went back to Jim and told him we needed a plan for tomorrow's care plan meeting. The staff has invited the DR to join us there, so we finally get to meet/hear from her. I told Jim that I thought our plan should be for him to come to my house before the weekend, and he happily agreed. The weekend nursing care is horrible, and we can get physical and occupational therapy here. I just want to make sure he is medically stable to come home.

Last night, Jim agreed to get a new GP, and to use mine. But he can't see her until mid-October. He also can't see the GI specialist until that time. So I got a 30 minute appointment with his soon-to-be-former GP for tomorrow at 5:30 PM. I asked for enough time for that DR to sit down and discuss Jim's diagnosis, prognosis, and quality of life with us. I'll try not to vent about how the DR didn't take appropriate blood tests to see this coming down the road.

While I'm thinking Jim and I are in just about the worst spot anyone can be in, I spoke at lunch today with another resident of the home. He must be mid to late 70s. Early last November, his wife was admitted to Shipley after a hospitalization (I don't know her health issue). He had planned eventually to bring her home (he said as he had done in the past), but he had an attack of congestive heart failure the day after her admittance, and he ended up in the hospital for 2 months. Then he was himself admitted to Shipley in the room across the hall from her. I'm not sure when, but she did pass, and he told this whole story with red-rimmed teary eyes. I'm thinking--woah--we haven't even started to see the worst of what life can throw at you. He had no children to help with the transition, but did have a niece. He mentioned that he has always eaten green vegetable (broccolli, spinach) with vinegar, but that Shipley doesn't have vinegar. I'll be taking him a bottle of white wine vinegar tomorrow. I hope to find what more I can bring him; he's a sweetheart.