Chapter Nine, Part 4: Gearing Up

When I think back to the last few days of Dad’s hospitalization, I remember so clearly some of what was going on, but other things are a blur or even a blank. I remember sitting by myself in the hospital cafeteria with a turkey sandwich in front of me, but I don’t remember how I got there or how the food got onto my tray.  I remember the tears that I could not stop from falling in a steady stream and both wanting and not wanting to be comforted.  I remember taking a bite of the sandwich and thinking that it tasted like cardboard but eating it anyway, because, like a lot of things going on during that time, it was something that I knew I had to do.  I remember thinking to myself, “You have GOT to hold it together” but not being at all sure that I could.  I remember feeling so desperate and so heavy with the weight of the decisions that my mom, my sisters, and I had to make.  I knew there were things that had been done that couldn’t be undone, and I knew there were actions that had to be taken to make things right for Dad.  I knew that I still wanted to choose Hope, but I realized that, from that time forward, Hope was going to be coming in a different form.

We had another couple of lucky draws from the Nursing Assignment Fairy.  Dad’s tag-team nurses this time, Day Shift Dave and Night Shift Jim, were very patient in teaching us about Dad’s medical needs.  Both of them somehow balanced empathetically caring for Dad with providing us with a listening ear and a shoulder to cry on in the hallway.  They seemed to be available whenever we needed them, but we didn’t feel like they were hovering or intruding.  Looking back, I see that, whether it was because they saw up close how very sick Dad was or because they took the time to listen to him and to us, they somehow “got” the seriousness of Dad’s condition and even the rhythm of his illness and of our grief.  

Even with support from Nurses Jim and Dave, though, we continued to scramble to try to meet Dad’s needs, often apparently without success. "It's just too much!”Dad said numerous times, with despair in his voice and with pain in his eyes. “Please, can’t I just go home?" he pleaded again and again.  It was, in a word, heartbreaking.

The doctors, especially Dad’s oncologist, still appeared to fluctuate betweenbeing baffled by the severity of Dad’s continuing medical problems and being blind to it.  Among the team of physicians involved in Dad’s care, no one seemed to really understand his declining status -- they said the tumor was "holding steady" and that his blood counts were “back to normal.”  For whatever reason, not a single one of them really saw Dad struggling to lift his head from the pillow or really heard him when he said, “I hurt so bad!” or “I just want to go home!” 

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.

Despite the lack of progress in Dad’s condition, the oncologist was gearing up to send us home before New Year’s Day rolled around.  He was all set to take another three-day long weekend starting that Friday, and so on Wednesday he wrote orders for the nursing staff to show us how to check Dad’s blood sugar, how to administer the insulin, and how to flush the PICC-line so that it would remain open for use if needed.  He told us that he had discussed Dad’s case with the neuro-oncologists at Duke and with the local radiation oncologist and that they felt the best plan was to have Dad start radiation and resume the chemo and Avastin one week after he had been discharged from the hospital.  He suggested that we consider having Dad moved to an inpatient rehab facility “for building strength prior to the start of radiation.”  He informed us that Dad would need “to be able to move himself onto the treatment table and to maintain a seated position for several minutes at a time in order to sit for the radiation treatments.”  (That, to me, was like someone telling me to run a five-minute mile; of course I wished I could do it, but, even giving it my all, it just wasn’t going to happen.)  When I expressed my concerns about Dad’s ability to withstand the radiation treatment, both in sitting for the treatment and in avoiding the possible side-effects such as a lowered immune system, the doctor’s response was, “Because he’s had a less than ideal response to the primary treatment, it’s a bit of a long shot that he will qualify for radiation and even more of one that the treatment will help, but I still don’t think it’s a crazy option.”  I asked him if the radiation could result in a functional improvement for Dad, and he said, “We just don’t know.  If the radiation is able to shrink the tumor, there is a small chance that things will improve for awhile.”  None of this was sitting right with me; I felt like not only were we being offered less-than-desirable choices but we were also being told that the odds were slim that any of the things being discussed would help Dad much if at all, if he even qualified to get any of them.  

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?”  

He looked puzzled, but I kept at it:  “Other than a slight decrease in pain and his fever going down, there really haven’t been any changes in him since we got here over a week ago.  He’s completely dependent on us for everything, he’s miserable, and he wants to go home.”

“I’m not sure,” the oncologist said.

“What would you do if this were your dad?” I asked him.

“I know exactly what I would do,” he responded. “I have medical power of attorney for my dad [who is also an oncologist], and he has told me in no uncertain terms that if he is ever diagnosed with an aggressive cancer, he does not want treatment; he does not want measures to be taken that will prolong things.”

Wow, I thought.  “And so, about hospice?” I persevered.

“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.”

I said ok, but it wasn’t.  I didn’t understand how he didn’t understand what I was saying or how he didn’t see what seemed so evident.  How could he think that staying in the hospital “through the weekend” would make a difference for Dad, except to depress and frustrate him more?  And how could he have been so quick to give an answer as to what he would decide to do for his own father and not be of the same mind for my dad at this point?  I was baffled and so, so sad; I just didn’t get why he didn’t get it.

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. 

That night, we made a list in the Notebook of possible options, including having him go to rehab again.  (Based on my professional experience, I knew this was not really an option for a patient in such a severely depleted physical condition; based on my personal experience from when Dad was in rehab in November and made NO progress whatsoever, I knew it wasn’t an option we were even going to consider, but, because the doctors said they thought we should think about it, I put it on the list.)  Checking him into an inpatient hospice facility went on the list, as did taking him home with home health or with support from hospice.  Those were the options, as we saw them; none of them were good, and it was quite possible that none of them were even doable if the stars didn’t line up just right and if we didn’t get our ducks in a row first.  For a split second, it seemed like there were gray areas in our what-to-do, some sorting through of the pros and cons that needed to be done for each of the considerations.  But then again, looking at Dad, lying there in the bed, it quickly became abundantly clear:  what we wanted for Dad – what he wanted – was right there in the forefront of our minds, and that was for him to get to go home.  

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.  

Early the next morning, Jennifer and I caught the oncologist in the hallway before he went into Dad’s room.  Before we could even say anything to him, though, he said, “I thought about your dad all night last night, and I realized that what you said yesterday about calling hospice is the right decision.  I want to talk to your mom and your other sister too, and then, if you all are ready to go ahead, I can write the order for a consultation from different hospice services, and then you can make a decision.”  We stepped inside Dad’s hospital room and saw that, thanks to the pain shot he had gotten an hour before, he was medicated into a sound sleep.  We all sat down around him, and, after further discussion, we said yes, we would like the orders to be written.  The oncologist looked at Mom and said, “I just want to be clear on this: are you ready to sign a DNR [do not resuscitate] order?  That will be required in order to get hospice services.”  No, of course we weren’t “ready,” I thought, but it is what needs to be done.  Mom took a deep breath and said she would sign the order. The way we saw it, Dad deserved to go home, he deserved to feel better, and he deserved a chance to enjoy his family, and if that meant using hospice, or signing a DNR order, or doing anything else, then that’s what we would do.

After the oncologist left, Jennifer, Nancy and I talked to Nurse Dave about hospice.  We had seen a flyer for one hospice provider in the waiting room (not the most uplifting thing to see in an oncology-ward waiting room, I must say, but we ended up being glad to have the info), and we were familiar with two other providers in the area – one was the agency already providing hospice care for my dad’s mom, and the other had helped care for my mom’s mom in the end stages of her battle with cancer almost 18 years before.  Dave suggested that we make an appointment with a representative from all three agencies to learn about each one.  “I think you should sit each of the reps down and ask them specifically,‘What makes your agency the best choice for us?’”  

We took his advice to heart, and we did just what he had suggested.  The intake nurse from the first company gave us lots of information and then, when we asked her the “Dave” question, she said, “We are the only hospice service that has 24-hour crisis care, which is in-home nursing support for critical cases.” After that, we interviewed the other two agencies, but we knew as soon as those words were spoken that the first company was the one we needed.  

When the oncologist came by that afternoon for his evening rounds, we told him which hospice service we were planning to use.  He said that he had heard excellent reviews about their services and that he would work with their physician to be sure we had whatever we needed to take care of Dad at home.  “I am going off duty for the next three days for the holiday weekend,” he said, “but I will call you at home on Monday to check in.”  He had tears in his eyes, and he seemed genuinely concerned as he turned to leave the room, but, as we came to find out,that would turn out to be the last time any of us saw or heard anything from him, ever.  

And so we met again with the intake nurse from hospice and, with her help, hammered out the details of setting up a delivery to my parents’ house of equipment and supplies first thing in the morning, and then she made an appointment to have Dad transported home by ambulance.  The next morning, Jennifer and I would be at the house to get things set up there, my mom would ride in the ambulance with Dad, and Nancy would drive Mom's car while following the ambulance.  Along with all the necessary medications and medical supplies, we would be getting a hospital bed with a special pressure-relief mattress and a Hoyer lift which could be used to gently lift Dad to move him as needed.  At last, we felt like we had the help that we needed, and the wheels were set in motion.

It felt buoyant to tell Dad that he was definitely going to get to go home.  As soon as the words were out of my mouth, though, he started trying to sit up in his bed as if he thought he needed to get ready to go right that second.  “It will be tomorrow, Dad,” I told him.  “We have to get everything ready first.”

“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.

In what came to mirror the way I desperately wanted to shield Dad from the knowledge that he had cancer around the time of his surgery, I pulled out all the stops to avoid having him know that we were signing on with hospice. This seems incredibly short-sighted now, but at the time I wanted the focus to be on living, not dying, even then.  When I talked to Nurse Jim about my plan, he let me tape a sign to the outside of the door to Dad’s room that said, “DO NOT MENTION HOSPICE! PATIENT KNOWS HE IS GOING HOME TOMORROW BUT IS NOT AWARE OF HOSPICE SERVICES.”  We wrote in the Notebook the wording we thought was better for him to hear, if and when the topic of hospice came up:  This allows us to care for you at home.  We’re going to take care of you. You did a good job and now you get to go home.  And the clencher – You don’t have to worry anymore; you are going home.