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Commentary: Tips to help deal with a loved one who is dying

August 23, 2003 from Weekend Edition Saturday

LINDA WERTHEIMER, host: Radio producer Ceil Muller lives in the Bay Area of Northern California. She was married to Alvar Stugard for seven years. Three years ago, he died unexpectedly of a chronic disease. Now Ceil finds herself wondering about lessons she can pass on to others.

CEIL MULLER:

The kissing, his tongue darting into my mouth, maybe that was the most important. With so little time left, every moment is memorable and questionable. His mouth might have been the most antiseptic place in that hospital. Certainly it was the most welcoming, greedily reaching out for every possible life-giving experience he could get. Death was not without pride. It was just greedy.

(Soundbite of heavy breathing)

MULLER: In the end, Alvie(ph) did die. So what follows is an etiquette list for those who may be dying soon. Keep it handy, because as everyone keeps telling me, `People die, you know. We all die.' That, by the way, may be tip number one for those who want to offer condolences, reminding the survivor that we all die is not a comfort.

(Soundbite of heavy breathing)

(Soundbite of music)

MULLER: Maybe there should be a list for survivors. OK, tip number two: When attempting to climb into the hospital bed, and it starts to creak, and you start thinking about how expensive they are, and you start to worry about breaking the damn thing, just do it. There will never be another place to hold each other again. When designing those beds, someone should think about that.

(Soundbite of beeping)

MULLER: Never mind the bed, the hospital's not a place to get rest. The staff is there to work around the clock. Blood technicians will wake you at 6 AM. So what if you only got to sleep at 3 AM, because they decided to move you to another room in the middle of the night? `We need to do this now,' you will be told. `The doctors need the results for their morning rounds.' Sometimes mysteriously, they will wake you just to weigh you. Because you are basically dying, you will not have the strength to fight them off.

(Soundbite of heavy breathing)

MULLER: If possible, do not enter the hospital when you know your time is almost up. However, your wife and loved ones will probably insist. They can't stop hoping. After all, they are still part of the world of the living. Continued belief in the practice of medicine could be considered irrational at this point. Everyone gets a little crazy when time is running out.

(Soundbite of sirens)

MULLER: And when I brought Alvie to the emergency room the final time, he was pissed. `No, I don't want to go back to the hospital,' he kept saying. But in my panic, I prevailed. Once there, the young doctor starts to ask the usual questions. And as usual, she shouts, `Do you know where you are? Do you know what year it is?' Alvie looks up and says, `I'm sick, not deaf.' This may be tip number three. Remind the personnel that you are a human being whenever possible. `Do you know why you're here?' she shouts again. Alvie looks over at me and answers, `Yeah, she got scared.' And then he answered the questions correctly. `I'm in the hospital. It's August.' But an hour later, his answer changed. `It's June.' We were starting to lose time. This was not good.

(Soundbite of heavy breathing)

MULLER: Tip five. This is a combo tip for both survivors and the dying.

Unidentified Woman #1: (French spoken)

MULLER: If you see the Transamerica Building out the hospital window at 2 AM and Alvie says, `Look, there's the Eiffel Tower,' just go with it. That trip to France you never took together, well, this is probably going to be as close as you'll ever get.

(Soundbite of music)

Unidentified Woman #2: (Singing in foreign language)

MULLER: You should get your affairs in order. That's what doctors are always saying on television. In real life, they never say this. But when Dr. Zee(ph) told me Alvie would never get a liver transplant, because too many 20-year-olds with genetic problems needed them more, he also said medicine is not a science. It is an unperfected art. Well, then, perhaps there would be a miracle.

(Soundbite of music)

MULLER: When words start to fail, you may be tempted to sing. Be careful what music you choose. You might never be able to listen to it again.

Mr. GUY CLARK: (Singing) Pack up all your dishes.

MULLER: I chose an old Guy Clark song, one that had been with us since we met in 1982. Alvie had recorded it for a film called "Heart Worn Highways." And me, I just always loved that tune. Some day, we were going to get out of the city.

Mr. CLARK: (Singing) If I can just get off of this LA freeway without you here, because I've been down a road in a cloud of smoke...

MULLER: The miracle we'd been hoping for arrives the next morning. The blood work comes back showing the ammonia levels have dropped from 135 to 40. Normal is 25. Alvie's mind clears. Dr. Zee talks directly to him, asking him if he wants some aggressive treatment. This doctor respects his patient as a human being. It is, after all, Alvie's life, and he gets to make the decisions. Later I'm told that it's mostly to make him comfortable. Alvie will be transferred to a skilled nursing facility. It turns out that just means nursing home. And no more life-saving treatment will be offered. He will either get better on his own, or he won't. Go figure.

(Soundbite of music)

MULLER: One last suggestion. Pay attention to what's being said between the lines. When someone asks, `Do you want me to die?' they're probably not asking, `Do you want to get rid of me?' But when they ask, `Do you want me to go now?' you have to start realizing that they are dying. If you are the one asking the question, then you know more than the living, you are starting to cross over.

(Soundbite of wind chimes)

MULLER: When I realized what Alvie was really saying, I was sitting outside next to a star jasmine(ph) plant. I should have taken him outside to smell it, but I told him, `Yes, you are very ill, and, no, I don't want you to die. Still, if you have to, I'll be OK, and I'll see you sometime later.' At the moment, I believed that. Now I'm back home, trapped in the bondage of time and space, but someday, I, too, won't be. Maybe then. Who knows?

(Soundbite of heavy breathing)

(Soundbite of wind chimes)

(Soundbite of music)

(Soundbite of single breath)

WERTHEIMER: Ceil Muller is a radio producer in the Bay Area of California.

This is WEEKEND EDITION from NPR News. Scott Simon returns next week. I'm Linda Wertheimer.