“We didn’t realize he had a DNR,” the nurse said apologetically, “so when he coded we resuscitated him.”
“He” was my uncle. I didn’t know he had a DNR either. I didn’t even know what a DNR was, but I was about to find out.
DNR stands for Do Not Resuscitate and it means that the patient has a document requesting that health care providers not perform cardiopulmonary resuscitation if breathing stops or the heart stops beating.
Uncle Ken had been diagnosed with a rare form of cancer and undergone radiation and chemotherapy, revolving between the hospital and a care facility. On that particular day, his heart stopped beating and they performed CPR and revived him.
Uncle Ken had always been very private about his finances, health, etc. When he became ill, he didn’t share much at first. But he kept getting weaker and needed help. My younger brother Steve and I were Uncle Ken’s only in-town relatives, and we shared in his care.
I am a stereotypical oldest child, practiced and comfortable being the boss. Uncle Ken adhered to old-fashioned gender roles. He wanted a man to handle anything of importance. He granted power of attorney to both my brother and me, but on that legal form and all others it was Steve’s name first, then mine.
Uncle Ken’s attitude aggravated me, but I’d grown accustomed to his way of thinking and we settled into a workable system. When he needed something, Uncle Ken called Steve, and then Steve and I divvied up the tasks.
I drove Uncle Ken to appointments, took him shopping, brought him to my home, stored his possessions here, helped him with Medicare, Social Security and income tax issues, attended his care meetings, made his favorite desserts from his mom’s old recipes — all the myriad things you do for people you care for.
Then one day, Steve and I were called to the hospital and told that Uncle Ken had coded and been resuscitated and was in a coma. He might wake up, or he might code again at any moment. If his heart stopped, did we want them to follow his DNR order, or try to revive him again?
How we agonized over that decision! Who wants to make a life-or-death choice for someone else? We finally agreed that, since he had signed the DNR order, we should honor what was evidently his wish and keep the DNR in place. The record was so noted, and we held our breath...
Uncle Ken regained consciousness after a couple of days. His eyes weren’t even open when I asked him about the DNR. “Do you want them to revive you if your heart stops again?”
I had to lean close and pull the oxygen mask from his face to hear his answer at first, a feeble, “Yes.” But he repeated it several times, adding, “I want everything they can do,” and the clincher that almost stopped my own heart, “I want to live.”
Steve and I could not believe we’d come so close to letting him go. It still makes my stomach tighten to think about that.
So we had the documents changed to reflect his new wishes, and Uncle Ken enjoyed several more months of life outside of the hospital — trips to our homes, holiday and birthday celebrations, online stock trading, lots of Bingo prizes, his favorite foods and visits from his out-of-town siblings — before ultimately succumbing to the effects of cancer.
Oh, yeah, and back on that day in the hospital, when he finally opened his eyes after coming out of the coma, he stared at the whiteboard on the wall, where his family contacts were listed, my name and then my brother’s name underneath.
He kept pointing to the whiteboard and gesturing with his hand. Once again, I had to lean in close and lift the oxygen mask to hear what he was saying. Finally I could make out his words, “Move Steve’s name to the top.”
Caregiver lessons learned: 1) Don’t get your feelings hurt. Part of being a caregiver is honoring the requests of the person you’re caring for, whether you agree with them or not. 2) Have those difficult discussions and complete the paperwork now — Living Will, DNR, Power of Attorney — or the wrong decisions may be made later.