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Apr 28-May 04

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It's been a while since I gave you all an update. These past few weeks have been a torrential rollercoaster ride for Bob and me. I'll try to get you all caught up on what is going on.

These past few weeks, Bob has not been well. He is finally showing improvement. This is a direct result of finally getting him off some medications that were causing behavioral and personality problems.

He had become combative, angry and verbally abusive. No one who knew Bob could believe they were seeing the same person. It was heartbreaking, and a couple weeks ago, I had to make the hard decision to place him in a rehab facility, in hopes they could effect a change in him. That turned out to a be a decision I regret so deeply, yet it has given me the space and time to understand what happened to him, and fight to get my husband the care he needs.

About four days after placement, I finally got a meeting with their team, and the nurse went over his medications. I was distressed to find out they were giving him an anti-depressant. Bob hallucinates on these medications. I asked who ordered it, and the nurse said it came over with the hospital orders. She made a poor choice in saying that, as I had a copy of his hospital orders in front of me. It was not a listed medication. I asked again who ordered it, and was told they would have to look into it. But I already knew: Their facility doctor had done it. He was the only one who could have ordered it. And he did it without consulting with any of Bob's doctors or looking into his complex medical history. I told them that the anti-depressant needed to be stopped immediately, and told them if their doctor had a problem with it, he needed to call me.

Let's just say, after that meeting, I wrote a very pointed and direct letter to the facility. I instructed them that they were to discontinue the fentanyl - which I believed was at the core of his personality and behavioral problems. I also instructed them that any medication changes needed to be cleared with his family doctor, cardiologist, neurologist and nephrologist, and they also needed to inform me. In writing. I also laid down a few other demands, such as weekly written progress reports. None of these have happened. The facility has not complied in any respect. Nor have they even tried to facilitate communication between Bob and I.

Last Friday, I made it clear I was coming to the facility to see my husband (who was on some kind of "isolation" - even though he was going to the dialysis center 3 times a week). I made it clear I wasn't asking for permission. I was coming.

Since then, they've been better about letting me see my husband. And that's where Part 2 will start. 

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