Chapter Seven

Hell Week

May 2002

The days that follow are a blur. There are flashes of lucidity and our hopes rise, only to be followed by some truly bizarre behavior, and our hopes plummet. Our emotions are roller-coasters; our nerves are sand-papered into hypersensitivity.

Several friends come to visit and leave quite upset, sometimes in tears. Some bring photographs, hoping the familiar will help. Another brings aromatherapy scents. Others bring tales of their own relatives with Alzheimer's. All bring offers of help: "If there's anything I can do..."

Lee is rarely controllable. He knots his sheets and blankets, continually tries to get out of bed, and actively hallucinates. He picks constantly at his IV line until I suggest covering it with an elastic bandage, following the "out of sight, out of mind" theory of dealing with the problem. It works.

He sees some minor road construction going on outside his window, and he talks about what he sees happening, which rarely is close to being accurate. Several times he attempts to disassemble his hospital bed or a chair. One evening he is on his hands and knees on the hospital floor “working” on the chair. It takes three men to get him back into bed. Lee shows a flash of anger and demands they leave him alone.

Rick and the girls spend hours walking him up and down the hospital corridors, even taking him to the seventh floor and showing him the rooms where we stay at night, assuring him that we are close.

He is angry with me for taking his clothes and wallet. I have done both intentionally, knowing full well that he would leave the hospital if he had access to them.

"I couldn't even call a taxi to get out of here”, he accuses. I tell him I have taken his wallet for safekeeping as the hospital doesn't want to be liable for its loss. This mollifies him somewhat, but he brings up the subject again and again. It is a complaint that he will repeat often in the following years.

One day he insists on getting out of bed and going to the bathroom. I am the only one in the room with him at the time, and try to stop him as he is unaware of all the IV lines and monitors hooked up to him. He takes me by the upper arms and moves me aside as if I am a feather. He does not hurt me, but I am immediately aware of how vulnerable I am.

Doctors come and go. During one of their visits, when three of them happen to be there at the same time, I mention that Lee had been complaining of stomach problems prior to his surgery. Instantly they suggest an examination of the esophagus. I ask if this won't require more anesthesia, and they say it will. I am reluctant to agree to this procedure, wish we could postpone it, but say nothing. My head is whirling in an eddy of conflicting feelings.

The appointment is made. During one of Lee's less bizarre moments I try to explain that he is going to have a test to see why his stomach hurts. He is suspicious, anxious, worried. He wants to talk with his family physician. I call the doctor’s office and get him and Lee on the phone. The doctor assures Lee that the procedure should be done, and Lee trusts his advice. I am surprised that he can comprehend all this.

I feel crushed. I know nothing about hospital protocol, can’t figure out one person from another, and even worse, I begin to suspect that Lee will be like this forever. My shoulders are stooped from the burden and I cannot think straight. It is during this week, however, that I begin to forge a relationship with Dr. Saunders. She has remained quite professional, maintaining a careful distance between herself and the patient’s spouse, which I understand. One afternoon, however, I encounter her in the hallway and ask her a simple question. At this point she shows me her compassionate side, and speaks with me for several minutes, offering comfort and advice of a non-medical nature.

Finally Lee begins to sleep a few hours at a time and we notice that he is more lucid after sleeping. We suggest that his evening meds be given earlier so that the sedating ones will have a chance to be absorbed and effective by a normal bedtime hour. This request seems to cause a problem with the staff, as if they do not want us interfering in their care schedule.

The girls ask Dr. Saunders about this, and from things that are done and said, we think there may have been a mix-up in her orders. She is not happy, and tells us it won't happen again. She does not elaborate and we don't ask questions. I suspect we have been made privy to information that should not have been communicated to us. Once again I feel I am inadequate for this new life we are facing.

Thursday morning arrives and Lee’s procedure goes well. There is no problem with his esophagus or stomach. I am relieved, but still feel as if I should have voiced a strong objection to administering more drugs to him.

We are asked to attend a care coordination meeting that afternoon with the surgeon, the hospital’s care coordinator, a social worker, and an advanced nurse practitioner who works with the neurologist. All of them recommend that we find an assisted living home for Lee, assuring us that we never will be able to take care of him at home. We are stunned. We are not prepared to even think about this.

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