“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.”
This is how the conversation started. She said, “It’s hard to talk about this, but I need to tell you what happened.” I said, “OK! Yes, talking things through is often helpful.”
Rebecca is 68 years old. Her husband of 46 years, Jim, age 72, is in a Midwest hospice. He will die very soon. Rebecca tells me, that she and her husband were blessed with good health throughout their long lives. In fact, the only time either of them was in a hospital was for the births of there three daughters. However, six months ago Jim began to complain of a persistent stomachache. His interest in food evaporated. He began to lose weight and he felt tired and run down most of the time. At first he chalked it up to stomach flu, but the symptoms just wouldn’t let up.
Fast forward five months, past the initial visit with his family doctor, and the blizzard of tests, and the arrangement to see out-of-state oncologist, and an avalanche of more tests, to Jim and Rebecca’s day of reckoning. “Jim, I’m afraid your cancer is inoperable.” His oncologist tells them. “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 them both like a semi. They left for home the next day. They wisely decided to forego the chemo and radiation and opted for as much quality of life that divine providence would afford them, which, by all accounts, would no more than a month or two.
“It all happened so fast. There was precious little time for Jim to even say goodbye to our daughters and their families, all of who live out of state.” Rebecca is recounting 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 pool in Rebecca’s eyes. “I feel like I’m on a run-away train heading, at top speed, for a derailment. I’m terrified and helpless.”
“Jim and I have always been close. I don’t think we spent more than a few nights apart in 46 years of marriage. And 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 local hospice, which is basically nothing more than a glorified hospital ward. But she tries to make the best of it. She brings linens and towels from home and family pictures and fresh-cut flowers fill Jim’s room. They hold hands and reminisce when Jim isn’t zonked out on morphine. And when he is out of it, Rebecca still holds his hand while she prays.
“Last week Jim had a real bad spell.” Rebecca continues. “He was uncomfortable and agitated. I didn’t know what to do, so I did the only thing I could think of. It’s exactly what I would have done if we were 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, the reason Rebecca won’t forget that final embrace is not because of the tenderness and intimacy she was sharing with her dying husband, but because shortly after she lay down with Jim in his bed, one of the hospice nurses barged into the room.
“The nurse, hands on her hips like some schoolmarm, face aglow with disapproval, glared at me.” “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.”
“Well you would have thought we were caught in an indecency. I stammered for words to explain, but no words came out only a groan. I was so ashamed. I must have been beet-red with embarrassment. It took me a few moments to untangle myself from Jim and find my footing on the floor. Luckily Jim slept through the whole thing. Bless him.”
Tears are now streaming 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 intimacy 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 who, for whatever reason, are 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 afford all people, especially those who are 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 we live in. And I also believe that when we violate the privacy rights of another it’s a form of abuse and harassment.