September 6, 2011

USA: Caregivers Don’t Always See the Spirit Diminishing

NEW YORK, NY / The New York Times / Health / Views / September 6, 2011 

As a loved one arrives at the end of life,
how do we know when it’s really over?

By Judith Groch

Illustration by Anna Topuria
Copyright 2011 The New York Times Company

I don’t mean, when should we act on the knowledge that life is ending — that is an entirely different problem. Rather, when do we grasp, emotionally, where things really stand?

For nine years my husband, Bill, was a dialysis patient. His kidneys had failed. Their microscopic tubules could no longer handle the job of correcting blood chemistries and cleansing Bill’s blood of the toxins and impurities that accumulate from daily living. Three times a week, an ambulette would arrive to take him to the hospital’s dialysis center. Then, while he was hooked up to the lifesaving artificial kidney, four long, boring hours followed during which Bill’s blood made the circuit via tubes from his arm to the dialysis machine and back again.

The machine, with its little blinking lights, was a lifesaving substitute but hardly a match for living kidneys. Once home, Bill, like other patients, usually felt awful, weak and washed out. In fact, dialysis patients literally are washed out. But they have been given a new lease on life, at least for one or two days.

In the early years Bill managed dialysis well, listening to music or watching TV; he handled his work on nondialysis days. He even traveled, arranging dialysis at the cities his work took him to. In the later years, when he became too weak and ill to travel, he lived only by the rhythms of dialysis. The hospital today, free tomorrow. In the last months of his life, Bill often grumbled about the blood cleansing that kept him alive.

As in the case of many dialysis patients, other health problems cropped up. The lack of kidney function already required the unnatural, sudden chemical cleansing of dialysis and cost him the hormonal gifts provided by working kidneys. Other ailments arrived, some affecting his heart. Bill became truly ill. He enjoyed his family, watched basketball, railed against political stupidities and played short sessions of bridge. But the windows were closing. Busy with the many chores involved in caring for a sick person, I did not truly grasp the death of spirit in this proud man.

Bill’s doctors were kind and patient, and cared for him as best they could. But they had a job to do: manage his blood chemistries and other health problems, then move on to the next patient. Bill’s life was slipping away, and I am pretty certain he knew it. We did not talk about it.

Then came a sunlit summer day when, advised by my own doctor to get away for a bit, I left Bill with his faithful aide. With the rest of my family, including my grandson, Zach, I traveled to a horse show at Lake Placid in the Adirondack Mountains. On that brilliant morning, puffy white clouds skittered across the electric blue sky that topped the mountain peaks. I can still see it.

While Zach prepared to compete in an equestrian jumping class, I enjoyed myself wandering around the grassy vendors’ court, lined with shops, pretty hats, fancy belts, shirts and riding gear. The atmosphere was warm and carefree. Visitors and riders strolled by, munching, gossiping and laughing. Beyond, I heard the call announcing the order in which riders were to enter the ring for the next round: “Stacy on deck, Catherine one, Karen two, Ellie three, Zach four.” I still had a few playful minutes before rushing off to watch him.

Suddenly my new cellphone rang. In my world, a ringing phone was rarely good news. Bill’s doctors were on the line. “Please, please,” they urged. “Bill is refusing to go to dialysis. You need to talk to him. He’ll listen to you.”

So there, while the sun glittered, the white clouds danced and children tumbled all around, I got on the phone with Bill and started pleading, then demanding. In a weak voice, Bill said he was not going. He wanted life, but that morning he did not want to go to dialysis. So I got tough and said he absolutely had to go. That was my job as assigned by the doctors. Back and forth we went until finally I prevailed. With his aide’s help, Bill got into his wheelchair and departed with the ambulette driver. I had saved the day. The doctors thanked me, and we hung up.

For a moment, the beautiful spell broken, I stood there shaken: one foot in the world of grass and mountains, the other in the ominous, gray hospital world. Then I put the phone away and headed back to the horse show.

But — and it is a very big but — for years now I have wondered what I had failed to understand that day. Bill was getting cantankerous and didn’t want to do what was right for him. I had to be strong and “stick with the program.” I was the only one who could do it.

What had I missed? Looking back, I didn’t grasp that not only was Bill sick of dialysis, but he was protesting the quality of life it maintained. He never said he did not want to live anymore, but paradoxically he also was suggesting that he no longer had the courage to be a dialysis patient. Although Bill was not talking about giving up and dying, somewhere the spirit in this brave, brilliant man was fading.

I was so close I couldn’t see it.

I do not call myself to task for my lack of understanding. It is probably useful that I didn’t understand, or I would have gotten myself and my family into a dreadful existential tangle. But at least, looking back, it has helped me call a spade a spade and give Bill credit for what he, at least, knew.

In sunlight, under clouds, even in rain, I have returned to Lake Placid many times since that day to watch Zach compete, but I never walk around that patch of grass without hearing Bill on the phone. Beyond stubbornness, my husband was trying to tell me something, but I had missed it.

After that day, there were no more protests. Bill dutifully kept his dialysis appointments until he exited life a few months later, his heart and body having failed. In that sense, he called the shots. No more dialysis.

Judith Groch is a medical editor and writer.

© 2011 The New York Times Company
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