chapter 11: part 3

continued from chapter 11: part 2


An often-voiced complaint from all of us in the support group was--- If we miss the doctor's visit to the room, how do we get current information? I never felt that the doctors we dealt with were lazy or incompetent; they simply couldn't take the time to relay messages to caregivers and this is where some sort of interventionist is needed.

I envisioned a medical data keeper. I would phone this person, Hal's file would flash on the screen and then I could say, for instance, "Listen, I requested a sedative for Hal yesterday because he felt so depressed, but the dosage is so strong that he sits in a chair with his eyes rolling up into his head and it took me two hours to get some food into him. He still needs a little dulling of the emotional stress and I missed the doctor's visit so what should I do?"

The nurses haven't time to feed him or even check to see if he is eating. If I'm not there when the doctor comes in, I'll never know what is happening and I couldn't rely on Hal for information, since he could be forgetful because of the large doses of morphine.

“Tell the nurses,” you say. I do, and it's duly noted in the charting but when will any information funnel back to me?

I want that clearinghouse person. Sometimes we feel desperate about what we should be doing and we need direction.

I never had the heart to call the doctor for a recap because I could see the amount of work he was trying to handle. I did call his secretary if I ran into problems at home with Hal and I was always careful to give concise descriptions of the problem; and those people are wonderful. They learn to tell who has an immediate problem and what can wait.

The head nurses at Princess Margaret hospital would take calls from worried caregivers and I will be grateful to them for the rest of my life. I’d rehearse the problem, then call and get one nurse who would listen carefully and either say, “bring him in, “ or make a suggestion about settling the problem at least for the night.

Most hospitals give out post -operative sheets of information to take home and that‘s good. You’ve had some of your colon removed, so you might expect some problems while you are healing and you can re-check the discharge sheet.

Some patients are advised to work through the family doctor while they are recuperating but I refused to take that route. I was able to avoid that because Hal’s surgeon arranged for regular follow-up visits and then eventually we did have the Oncologist. I just don't believe you can get the best for your partner if you are working between too many medical people. If you live out of town, away from the specialist, then you haven't any choice.

I did some serious strolling past the nursing station while Hal's doctor was chatting with the nurses; it was important to me that he treated them like the professionals they were.

Only once once did I encounter in the hospital one of these autocratic I-am-god doctors, filling in for Hal's doctor over a weekend. You could hear him the minute he got off the elevator and onto the floor. He didn't walk into the rooms, just stood in each doorway, shouting at each patient as though those objects in the beds were all missing their ears. His style was downright rude and insulting with the nurses, never looking them in the eye when he spoke and to their credit, the nurses did not take this out on the patients. Did we complain on their behalf? Who would we tell, if we dared?

continued in chapter 11: part 4