House Calls: Story 5

My beloved husband Calvin died on Sunday, Dec. 5, 2004, less than 20 days ago. I barely left his bedside for the last two weeks of his life. I slept in a recliner in his room. I shudder to think what his last days would have been like had I not been there. The nurses at the hospital on that floor have twelve patients to attend. Nobody had time to do the little things for him to give him comfort the way I did. They gave him his meds, usually within a couple of hours of when they were ordered; they took his vital signs, but that's about it.

He lost the ability and strength to feed himself. Had I not cut up his food and helped him, he would have gone hungry, because he did not have the strength to reach for and push the nurse call button. He did not want to "bother" the nurses. Ultimately he became too weak to eat. Had I not been in the room with him, I would not have heard him whisper, "Water," and hold a cup to his lips; and later, a straw. It was I who helped him out of bed to the bathroom until he became too weak to even do that; then it was I who would call the nurses and request assistance with a bedpan. If I hadn't insisted, he would not have received clean linens, fresh pajamas, or a bed bath. It was I, not the nurses, who wiped the sweat from his face several times a day. It was I who massaged his feet and gently rotated his joints and put balm on his lips to keep them from drying out. The nurses simply didn't have the time to do these things.

When his breathing changed early on the morning he died, nobody would have noticed, perhaps for hours, if I had not been sleeping in a chair beside him. It was I who alerted the nurse; he then called the doctor, who then came and listened to his chest. I had my hand on his ankle and felt it when his pulse stopped at 6:45 a.m. Because I was there, my husband did not die alone.

Yet nurses are not trained to perform these acts of compassion, to provide some measure of comfort in a patient's last hours. I don't believe anyone is trained to do these things. There is no job description for this type of end-of-life care, as far as I know. Here is a need that is not being filled. Family members need to know that their loved ones may not be getting this kind of care and comfort and support in their last days and hours.

I have to say, however, that the nursing staff was very supportive of me during this time. They made a shower accessible to me, made sure I had plenty of books to read, and even brought chocolate, cookies and snacks. One nurse in particular made sure I got a hug whenever I needed it. They alerted me to a cancer support group and encouraged me to attend; they paged the social worker or chaplain promptly whenever I needed them, and allowed me to help myself to the ice bin in the "staff only" area so I could keep my husband's pitcher supplied. They were caring and kind and I will never forget them.

It was not easy to watch my husband die, but I will always be glad that I was able to ease his suffering in these small but important ways. I am glad that I was with him in his final moments, whether he knew I was there or not. I knew he had leukemia when I met him in 2000; we knew that our time together would be short, and we cherished every moment we had together. He was an awesome man; a brave, funny, intelligent and generous man, who gave me more joy and love and laughter in our nearly four years together than I ever would have dreamed possible. I miss him, but I will never regret a moment of our time together.

Stephanie McGaha
Aztec, New Mexico