As the sun came up on the first day of the year in 2011, family members filtered in to Dad’s bedside in the den of my parents’ house. Dad alternated between dozing for short periods of time and talking to those around him in a raspy voice. As we watched him dutifully try to swallow the pills that we gave him, we decided to start splitting them in half and then, if (when) even that became problematic for him, our back-up plan, which we ended up needing to employ only the next day, was to crush them or to ask the Hospice nurse for a liquid form of the same medicines. Like the Hope to which we were all still so desperately clinging, we would adjust the medicines as needed as part of the Bargain, while never losing sight of our overall goal of keeping Dad as comfortable as possible.
When I think back to the scene at my parents’ house that morning, I see it in my memory like footage on a time-lapsed video: a flurry of activity, with different family members and later the hospice nurse coming in and out of the picture and with Dad there in the center. After a brief and probably unnecessary discussion with my mom and my sisters, I cancelled the arrangements for the trip that Mom and I had planned to take with Dad to the Brain Tumor Clinic at Duke for a follow-up visit on January 17. I emailed back and forth with Dad’s swim team coach and friend Ashley as she worked to put together a schedule of meals to be provided to my parents’ house several times a week by Dad’s teammates on the swim team and other friends through the first week in March. My sisters and I wrote out a calendar showing when each of us would be there with Mom and Dad through the end of February. We were all struggling more than I can adequately describe to process what was happening and to think about what the future would hold; the amount of time we would have together was still very much unknown, and I guess it helped us in some way to feel a tiny bit of control by having a plan of sorts, “just in case,” a phrase that we seemed to be using a lot during that time. It was so hard to try to find the right balance of what should be done right that second and what reserves we would need at different points in the future. As my brother Lee said in an email, “Ideally we would all take leave at our jobs and just be there [with Dad] 100 percent over the next few weeks and months.” Even though none of what was going on was ideal, I suppose we were all still hopeful on some level that Dad would rally enough to have some quality time left, and of course we wanted to do what we could to be prepared and to be present for that, if our hopes came to fruition.
After Dad had gotten home the day before, I had updated the Care Page to let people know that he was home, and, in the morning on New Year’s Day, I updated it again. We knew that a lot of people were wondering and worrying about Dad and about us, and we hoped that through these updates, we could inform others about the fact that we had chosen to bring him home with hospice support while making it clear that we did not want to garner sympathy. I, in particular, didn’t think I could bear anyone else’s shock, sadness, grief, disbelief, anguish, or – what I thought would be the hardest to hear as I looked at Dad lying there in the bed – denial. I had more than enough of those things on my own. I felt like I was so fragile that I would absolutely fall apart (or unleash) if anyone said that they were sorry or otherwise framed our decision and Dad’s presence at home with us as a loss, even though of course we all regretted that his body could no longer withstand the treatment we had so hoped would give us a miracle. We wanted (and needed) support and love, and thankfully that’s exactly what we got, through the many messages on the Care Page and via other sources from our extended family members, our friends, and even from people whom we didn’t know but who knew Dad.
We thought Home would be nourishing for Dad, enough at least for him to improve enough to be comfortable and settled. As fuzzy as some of my recollections of my thought processes are from during this time, I clearly remember that we were all expecting weeks and maybe even months still with Dad and that we were hopeful (personally, I was actually expectant) that he would feel ok during the majority of this time. Jennifer, who lived the furthest away, had reservations to fly home with her husband and children in the afternoon that day, and, like the rest of us, she was painfully torn about whether she should stay by Dad’s side – which actually seemed less hopeful – or go home as planned and come back again to see him soon. How we desperately wished that the Hospice nurse or someone else would (or could) tell us what the best thing to do was! Instead, though, as we had been doing during the entire ten weeks that Dad had been sick, we pulled together and did what we thought should be done, with Hope and a couple of back-up plans in our back pockets. Mainly, our Plan was to have a Plan, even though we knew revisions and adjustments would most certainly have to be made along the way.
Before she and her family left to fly home, Jennifer booked a flight to come back the following weekend. Lee, who also lives far away, booked a flight to come for the weekend after that, and Nancy, my husband and hers, and I filled in as many of the other spots on the calendar as we could. We made arrangements with a company that provided “sitter service” (How awful is that term?) to have a trained nursing assistant come during the other times so that there would always be a third person at the house to help Mom with Dad, plus the Hospice nurse, around the clock. None of it was ideal, but it was the best way we could see to arrange for Dad to be at home, as he wanted and as we did too.
Around the middle of the morning that day, I went upstairs to take a shower. As I was getting dressed, Jennifer knocked on the bathroom door. “Dad is eating bacon and drinking beer!” she said excitedly through the door. With my hair still dripping wet, I hurried downstairs to see for myself, and there he was, in the den, with the head of the hospital bed cranked up, eating bacon and some of what he referred to as “fruity dessert,” which was fresh fruit that had been purchased already cut-up at the grocery store, a long-time favorite snack of his. Evidently, Dad had smelled the bacon that David had been cooking in the kitchen and had requested some along with the “fruity dessert” and a Foster’s, and, of course, he had been served all three right away. The TV was being changed back and forth between two of Dad’s standard New Year’s Day favorites, football and the parades. I remember sitting in a chair beside his bed and consciously soaking in what was going on in the room, so happy that we had been able to bring Dad home and that we were all there together in that moment, but so sad because I couldn’t help myself from realizing the necessity of hoarding that memory in my mind for when we couldn’t be.
In the many pep-talks I had gotten from Dad before races I had run when I was growing up, he had always advised me to run an evenly paced race while still saving enough energy to “surge” before the finish. “The race can be lost anywhere along the way,” he said every time, “but it can only be won on the last part of the course.” I guess that morning was Dad’s surge, his way of “kicking it in” on the last part of the course for us, even though he had already put in such an outstanding, impressive effort along the way.
“I need to close my eyes for a little rest,” he said after he ate. Not long after that, though, he opened his eyes and motioned for me to come closer to him. As I leaned in, with fear and confusion in his voice he asked hoarsely, “How will you know what I want to tell you when I can’t tell you anymore?”
Looking back from my vantage point now, I wonder if he meant what I thought he meant at the time when he said these words. I thought he was seeking reassurance that we would be able to meet his needs if he lost his voice, and, as such, that is what I focused on when I responded to his question.
“We’ll know because we’ve been able to spend so much time with you, and we know you,” I told him.
Not completely convinced, he said, “Are you sure?”
“Yes, Dad,” I told him, with as much confidence in my voice as I could manage. He made a motion with his fingers by his shoulder at the edge of the sheet on the bed, and then an idea came to me about how I could prove to him that we would know what he was trying to tell us, even if he could only gesture. “You want your covers to be pulled up, right?” I asked him.
“Yes,” he said, and then my sisters and I demonstrated the other hand signals that we had all come to associate with what he wanted or needed over the past weeks, from touching his forehead to mean “I want a cold cloth on my head,” to tapping his mouth to mean “I want something to drink,” to making a slight “come here” gesture with his index finger to mean “I want a little piece of chocolate.” I could see acceptance coming into his eyes, and, although I’m left to wonder if it was in regards to something much larger, at the time I took it to mean that hebelieved and trusted that we would continue to be able to meet his needs, and I was so grateful for that.
Over the course of the previous afternoon and during the night, we had decided to rethink our plan of having Dad’s bed in the den. Instead of enjoying being in the center of the activities going on in the house, he seemed confused and overwhelmed, and we hoped the solution was relocating the hospital bed to my parents’ bedroom.
Because we knew the move could potentially be stressful and could contribute even more to his level of anxiety and confusion, we asked Mom to take the four kids to run an errand to cut down on the number of people in the house so that we could keep things as quiet and serene as possible. And then, while Dad closed his eyes again for a little while, we huddled to come up with a plan of how we could safely move Dad and the hospital bed from one room to the next. Fortunately, the bedroom was on the same floor of the house, just around the corner from the den, but there was a short, narrow hallway that included two ninety-degree turns to navigate in between, and there was no way the hospital bed was going to fit through that opening without being disassembled. Dad had suffered so much from being moved while he was in the hospital, and we knew that the transfer could be scary and even painful for him, and so we turned over several possible strategies before settling on what we thought was the best idea for the move.
The Hoyer lift was out; having to turn Dad back and forth in the bed to stuff the harness underneath him and well as having him dangle in the air as we cranked the lift so the apparatus’s arm would swing him outward was just too risky. And so, we improvised: my sisters and I pulled the sides of the sheets underneath Dad up and wrapped them around him in a swaddling fashion. We lowered the bedrail and the adjusted the height of the hospital bed as low as possible, and then our three husbands swiftly and surely yet very gently slid/lifted Dad straight across from the bed to the couch. My sisters and I sat on the floor next to the couch to act as “human bedrails” and to distract and comfort Dad as needed. In a span of less than five minutes, our husbands, working in tandem while throwing out periodic reassurances like “Hang in there, Bill! We’re almost done!”, deflated the air mattress, disassembled the bed frame, moved all of the equipment from the den into the bedroom, and put everything back together, including putting on a fresh set of sheets on the newly-relocated bed.
I left my sisters to sit with Dad and stepped into my parents’ bedroom to check things out, and I was happy to see the hospital bed all set up, right next to my parents’ king-sized bed. With the rail lowered on one side of the hospital bed, the two beds were almost conjoined to make one giant bed. Given the circumstances and what we thought Dad needed, I thought it looked perfect. But next came the really tricky part: moving Dad from one room to the other. Again, we decided to forego the equipment (the wheelchair and the lift) and to use strategy and muscle: with Dad still cocooned in the sheets and blankets and with my brother-in-laws clearing the way and providing back-up support “just in case,” my husband carefully lifted Dad from the couch, swiftly carried him down the hallway to the bedroom, and tenderly placed him on the bed so that my sisters and I could quickly cover him up to keep him from being cold. Dad so obviously trusted his three son-in-laws so completely; he asked them once during the move, “Y’all have me, right?” but other than that he didn’t seem nervous or scared at all during the transfer, and he definitely seemed relieved to be in his own bedroom once the process was over.
Mom and the kids came back and were glad to see that the undertaking had been a success. We set up a baby monitor in the bedroom with the receiver in the kitchen and, when Dad announced that he needed a little quiet time to rest, we left the room for a while, although I will admit that my sisters and I took turns standing right outside the bedroom so that we could listen and peek around the corner to check on him every couple of minutes. It felt odd to leave him alone even for a minute, something that we hadn’t done since he’d gotten sick 70 days before. The whole situation felt surreal and very dichotomous; it was so good to have him home but so overwhelming and shocking that we were where we were. Watching him over the next couple of hours as he slept, I think part of me had already accepted that our time with him was very limited, but another part wanted (and needed) to believe that he could turn things around and hang on for much longer, although of course I didn't want him to have to if that meant more suffering for him. When I pressed for information during her visit that afternoon, the hospice nurse said that she couldn't predict how long but that she would guess it would be “in terms of weeks rather than months.” As my mom, my sisters, and I listened to her words, our hearts were breaking. We wanted to do whatever he needed, and yet what was so obviously happening was something none of us wanted to accept.
Nancy was sitting in the room with Dad when he woke up, and he told her to tell me to come into the room so he could ask me something. She did (she thought he was going to ask for medicine), and I did, and Dad asked, “Can I have a beer?” I told him yes and that I would check the schedule to see what medicines he needed and then after that I would bring him a beer. He seemed a little perturbed by my answer, and then he suggested not so subtly, “How about if you get the beer first and then do whatever else after that?”
I guess I hesitated for a second, and so he added for emphasis, “Don’t worry; just hurry!”
“OK, Dad,” I said, and as I left the room to get the beer, he called after me: “Tell everybody: don’t worry, just hurry!”
I returned as quickly as possible with the beer, and then I held the straw while he sipped it. After a couple of minutes, he seemed to tire, and he told me to put an extra Foster’s under his bed “just in case” he needed it for later. He said he didn’t want to have to bother anybody or to wait if he wanted it. I told him that I liked getting things for him, and, with a half-smile on his face, he responded,“Well, then, I guess I just don’t want to have to wait.”
Jennifer, her daughters, and her husband each spent time with Dad before they had to leave for the airport that afternoon. Each of them had to lean in close to him so they could hear him talking with his scruffy voice. When my nieces told him they loved him and then got up to leave the room, he put forth a visible effort to push his voice into an audible whisper as he called out that he loved them, too. As my husband, my daughters, and I did when we had to leave the next day, they all thought they still had time to come back and spend more time with him; none of us foresaw the speed at which things would happen over the next few days.
We continued to take turns sitting with or lying in the bed beside Dad for the rest of the day, through the night, and into the next day. He was still having intermittent pain, mostly in his head and his throat, and he was still having some anxiety, but all in all his discomfort seemed to be much better controlled than it had been in the hospital. Dad didn’t seem distressed about his own plight; his anguish came from worrying about his family and our future. He so obviously trusted that we would take care of him, but he also seemed to want to still be able to take care of us, too. It was like that was the last thing on his Revised Bucket List or on his “to do” list.
Although we gave Dad some small sips and then later squirts from syringes of water to drink, he was no longer requesting anything to eat or to drink. Little by little, we realized the truth about Nourishment, the substances necessary for growth, health, and good condition. What he needed wasn’t food or calories – it was re-assurance, comfort, and love.
By Sunday morning, we noticed that Dad’s level of anxiety and even confusion seemed to escalate if there were more than a couple of people in the room with him at once or if he could hear any type of background noise like that from the TV or any music. He seemed to like having someone there with him and several times patted the space in the bed beside him to indicate that he wanted one of us to lie down beside him in the bed, which we were happy to do. The pain medicine that we had been instructed by the Hospice nurse to give him on a strict schedule “to stay ahead of the pain” allowed him to rest intermittently, but at times we could see that he was distressed, even in his sleep. Several times while he was asleep, he called out things like, “I have to check on Mom!”and “Stanley [his younger brother] and I have to finish our homework!” By the time I had to leave to go home with my husband and my daughters, the worrying was blurring over into his awake-time too. It seemed like Dad was pulling out all the stops just to hang on.
Before I left, I went over the medication instructions again with my mom and Nancy, who, along David, were staying there. My daughters and my husband hugged and kissed him goodbye, and he in turn told them he loved them. As they packed the car, I went into the bedroom, climbed into the hospital bed, and put my head on Dad’s chest. He was quiet and still. I told myself that he seemed to be resting peacefully and that that was a good thing, but I couldn’t stop the tears from coming so fast and furiously that after a couple of minutes I had move my head from his shoulder so I wouldn’t get his entire shirt wet. I told him that I loved him, that I was so proud of him, and that I would always feel so lucky to have him for my dad, and then I kissed him and got up to walk out of the room. Although I did not realize the quickness of the events soon to unfold, as I looked back at him, so small and so quiet in the bed, I knew in my heart that, despite his struggle to stay with us and ours to keep him with us, Dad was fading away.
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