There is such a dichotomy when someone you love is catastrophically ill; on one hand, you want the medical staff to realize how unique and special your loved one is, but, then again, you also want them to swoop in with the attitude of “This is no big deal - I see this stuff every day!” Either way, though, you expect them to accurately and efficiently assess what is going on and then to figure out what to do about it. This absolutely did not occur among the physicians on Dad’s case. Either they didn’t really see what was happening or they saw it but they didn’t know what to do about it. By the third day after Dad had been moved from the ICU onto a “regular” floor, we had begun to see that we were going to have to figure things out on our own, and that is a horrible feeling, entering unchartered territory, in a state of shock, without a guide.
When the oncologist left Dad’s room, I followed; I caught up with him at the nurses’ station and told him that we were worried about how we would care for Dad at home but that we wanted to take him home.
“I just don’t see rehab as an option for him right now,” I said. And then I pushed even further. “I asked you when you first came on as Dad’s oncologist if you would let us know when the time came for us to call in Hospice. Do you think that time is now?”
“I’m not sure,” the oncologist said.
“What would you do if this were your dad?” I asked him.
“I think maybe there may still be some options we should consider. He could stay in the hospital through the weekend if needed. Let’s talk again in the morning.”
After he left the unit, I stood in the hallway outside of Dad’s room crying, and Nurse Dave came over and put his hand on my shoulder. He said he had heard my conversation with the oncologist. “He doesn’t see what we see,” he said. “I know!” I wailed. “Sometimes that is the case with oncologists,” he said gently. “It’s like their only goal is a cure, and sometimes that just isn’t going to happen. Sometimes treatment doesn’t work. Sometimes treatment isn’t what a patient really needs or wants. Sometimes the oncologists don’t know when to say when.” He paused, and then he added, “You can ask for more information on Hospice without making any kind of commitment.” As my sobbing subsided, I considered his words carefully. I knew we needed help and more information before making any kind of decision. I knew we had to figure something out and that we needed to do it quickly.
We were very concerned about our ability to provide the quality of care that he would need in that setting, but we wanted to try to figure it out. As had been the case during Dad’s treatment, we planned to operate as a team, and, also as we had been doing, we would take each hurdle as it came. Our focus became finding out what we needed to know and getting set up to care for him at home; we were gearing up both physically and emotionally for what we couldn’t deny lied ahead.
And so the question became - How can we get him home and take care of him? Looking at our list in the Notebook, the only way we could see it happening was with ongoing support from an outside source, and the only form in which that seemed to be available to us was through hospice. At first, the decision to go with Hospice seemed like surrendering, but, as we met with representatives from different agencies and learned more about the process and the services, it started feeling more like taking control of the situation for the first time since Dad’s diagnosis. We told ourselves that we were just going to “use” Hospice … and then we could revoke, if things improved as we hoped they would. The home environment will be therapeutic for Dad, I thought, and then he will start feeling better.
“What’s to get ready? I can just get in the car and go, and all of my stuff is already at home,” he responded hopefully. I told him we had to be sure we had the medicine that he needed and that the doctor had said he had to stay in the hospital until the next morning, and he finally accepted that in a deflated kind of way. He was ready to make big plans, though: “As soon as I get home, I want to turn on the fire in the fireplace and the space heater so I can finally be warm. I need to stretch my legs and then I’m going to play with Foster and the dogs and drink a beer, okay?” he said.
With that, I smiled for the first time in a long time. “Okay, Dad, that sounds like a great plan,” I told him.
To Be Continued Here: Part 43 - Home At Last