Life Matters Media
Start the most difficult conversation American isn’t having- the conversation about our end of life preferences

It Never Entered My Mind

“Though we may be sick, even sick to death, we don’t stop being human. And our desire for the intimate connections we have with those we love remain intact until we die.”

Let me tell you how the conversation started. She said, “It’s hard to talk about this, but I need to tell you what happened.”

Rebecca is 68 years old. Her husband of nearly a half century, Jim, age 72, is in a Midwestern hospice. He will die very soon. Rebecca told me that she and Jim were blessed with a marriage of good health. In fact, the only time either was in a hospital was for the births of their three daughters. However, six months ago, Jim began to complain of a persistent stomach ache. His interest in food evaporated. He began to lose weight, and he felt tired most of the time. He chalked it up to stomach flu at first, but the symptoms just wouldn’t let up.

Five months later- past the initial visit with his family doctor, the blizzard of tests, the arrangement to see an out-of-state oncologist and more tests- Jim and Rebecca arrived at a day of reckoning.

“Jim, I’m afraid your cancer is inoperable,” his oncologist said. “We could try an intensive campaign of chemotherapy and radiation to slow the growth of your tumors, but that’s about all that is humanly possible.”

The doctor’s verdict hit Jim and Rebecca like a semi. They wisely decided to forego the chemo and radiation and opted for as much quality of life that divine providence would afford them. A month or two- maybe.

“There is little time for Jim to even say goodbye to our daughters and their families, all of whom live out of state,” Rebecca told me, as she recounted Jim ’s last few days at home. “Our house is not set up for the kind of care Jim was going to need, so we looked to hospice.” Tears pooled in Rebecca’s eyes. “I feel like I am on a runaway train heading, at top speed, for a derailment. I am terrified and helpless.”

She continued on, and the conversation became more personal.

“Jim and I have always been close, and I don’t think we spent more than a few nights apart in 46 years of marriage,” Rebecca said. “We’ve always been very affectionate with one another, even in public. Our friends used to kid us about behaving like newlyweds- they would joke and say, ‘Hey, get a room!’ I think they were all secretly jealous.”

Rebecca is now spending all her waking hours with Jim at the hospice, which is nothing more than a glorified hospital ward. She tries to make the best of it. She
brings linens and towels from home, as family pictures and fresh-cut flowers fill Jim’s room. They hold hands and reminisce when Jim isn’t zonked out on morphine. When he is asleep, Rebecca holds his hand and prays.

Jim had a terribly bad spell last week. He was uncomfortable and agitated, and Rebecca didn’t know what to do. She did the only thing she could think of, she told me. Exactly what she said she would have done if the couple were at home.

“I kicked off my shoes, took off my sweater, and climbed into bed with Jim. He was lying on his side, so I slid one of my arms under his neck and I draped my other arm over his abdomen. I nuzzled his neck. I could actually smell him, like I remember him smelling before the hospital odors dominated. In a matter of minutes my embrace calmed us both. It was such a beautiful moment, I’ll never forget it.”

Unfortunately, another reason Rebecca won’t forget that embrace is because one of the hospice nurses barged in the room.

“The nurse, hands on her hips like some schoolmarm, face aglow with disapproval, glared at me,” Rebecca said. “She demanded: ‘What do you think you are doing? We can’t have this sort of thing in here. I’ll have to ask you to leave that bed immediately.’”

You would have thought the two were caught in some indecency. Rebecca stammered for words to explain, but no words came out- only a groan. She was so ashamed, beet-red with embarrassment. “It took me a few moments to untangle myself from Jim and find my footing on the floor,” she said. “Luckily, Jim slept through the whole thing. Bless him.”

Tears streamed down Rebecca’s face. “It never entered my mind that cuddling with my dying husband, soothing and comforting him, might be interpreted as something inappropriate. When the nurse finally left the room, I hung my head and wept.”

This is a cautionary tale; though we may be sick, even sick to death, we don’t stop being human. And our desire for the intimate connections we have with those we love remain intact until we die.
So many of us are thoughtless about the intimate needs of those around us. Is this a sign of our culturally induced unease with sex? Probably. But when our thoughtlessness impacts on the lives of those incapacitated, that disregard can be devastating. Regardless if our neglect is careless or intentional, the injury is the same.

Those of us who care for and attend sick, elder and dying people need to be particularly vigilant to our prejudices and discomfort around sex, sexuality and intimacy. Jim’s thoughtless nurse compounded Rebecca’s grief and anguish with guilt and shame. This professional woman should have known better. She violated
her patient’s privacy and then shamed her patient’s wife for an innocent act of loving care. And for what?

I believe we ought to afford all people, especially those incapacitated, a modicum of privacy. I believe that personal privacy should be part of every patient’s bill of rights. Curiously enough, the privacy of our medical records takes precedence over our own personal privacy. What a strange world in which we live.