“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender it when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.”
― Atul Gawande, Being Mortal: Medicine and What Matters in the End
Being a caretaker was a lot like being a first time mom. On the outset, I kind of thought caretaking would come naturally and I had rosy expectations of how wonderful this would be. It would be a special time of growth for our family. Sure there would be hard times, but it would be so meaningful that we wouldn’t hardly notice the inconveniences. In reality, it wasn’t as idealistic as I had imagined. I wasn’t as patient or good natured as I’d imagined. Much of the time I was tired, overwhelmed, and didn’t know what I was doing. Our life revolved around Glenna’s care – we even slept with a baby monitor for the times she needed help in the middle of the night. All of our energy was being funneled into surviving. Half the time the kids homework didn’t get done and we were constantly bailing on any plans we made. Just like life with a newborn, keeping everyone alive for another day was considered a success. There was one glaring exception though where it wasn’t like having a baby at all. When you have a baby the future is filled with the hope of milestones and the promise that things will get better, but when you’re caring for someone with a terminal illness the future is harder to look forward to. However distant or imminent, the decline will come and things will get harder.
In retrospect I feel a little guilty about how difficult it was for me. Glenna was truly a gem to care for. She was rarely grumpy or demanding. For the most part, she was extremely upbeat and did everything she could to not be a burden. But still, it was hard.
Because her cancer, at least in her lungs, was shrinking, but her overall health was declining it was sometimes hard to know what to hope for. When Noel or I would take her to appointments, we would always return extremely frustrated. At the onset, the oncologist team was extremely encouraging. They told us her lungs were improving and the rest of her health would follow. We just needed to wait and she would turn the proverbial corner. So we waited. As the appointments went on, Glenna would be buoyed by the news that her lungs were looking better and we would be frustrated because it didn’t feel like we were rounding that corner. Noel and I would stay up hours later than we should have, debating whether we were just having bad attitudes or whether we were the only people who really saw what was happening. It was frustrating to watch her suffer and we often felt helpless. Many days it felt like she was in limbo, neither making strides to improve nor decline. There was no clear direction on whether we should we be pouring optimism into the hope for a cure or preparing ourselves for the worst. The emotional flip-flopping was exhausting and with no end in sight we worried about our ability to continue indefinitely as her caretakers.
Because of the conflicting evidences, it took Glenna a long time to decide whether or not to continue the Tarceva. She hated taking it. Every day when 4 o’clock rolled around I felt like a heartless jerk when I would give her the pill. But Noel and I agreed that she needed to be the one to make the decision to stop, not us, and we tried our hardest not to influence that decision. On February 1st, she made the decision to stop taking the Tarceva and not pursue other treatments, but even having made that decision, it took her 10 more days to decide that she wanted to start hospice. Glenna often said she hated it when people would talk about “fighting cancer” because by that vernacular if you died you were a failure who was either not strong enough or didn’t fight hard enough. When she started with The Denver Hospice, they gave us a family guidebook. These words rang true to me, “Understandably, most people are uncomfortable with the idea of stopping all efforts to cure their disease. It is courageous to fight terminal illness, and it is equally courageous to know when to discontinue treatment that is no longer helpful.”
Hospice was a hard pill to swallow for many family members, but it was a godsend for Noel and I. They came to us and were available for consult 24/7. They brought in better equipment and sent medications directly to our house. Noel and I had both read Atul Gawande’s book Being Mortal and had positive views about hospice. We knew the stats that people that start hospice earlier often live longer and have better end of life quality. Again, we were hopeful. The hope was short lived though. Days after starting hospice, Glenna began to decline mentally. She’d been having hallucinations for months, but with a few exceptions she always knew they were hallucinations. At first, Glenna was sure it was the changes her hospice nurse had made in her drugs. They’d switched her short acting morphine pill to a liquid since it worked faster (which is desirable when one of your main problems is breathing), but because she was so paranoid about it, her nurse told us it was okay to just let her keep taking the medicine in pill form, especially since swallowing was not a current issue. Glenna was relieved to go off the liquid, but she was still loopy. She kept pulling her oxygen cannula off and would become disoriented about where she was. We were constantly calling the hospice nurse line and when the nurse came out to check on her only a few days later she told us that from her experience Glenna was nearing the end. (This was also the first of many times it would be suggested that the cancer might be going to her brain. Scans are no longer done in a hospice situation since the goal is no longer fighting the illness, but based on the number of nurses that suggested this and the experience of a friend whose mom died of lung cancer that spread to her brain, I think it probably did.)
Family changed their lives around to arrive within the next few days and soon our house was filled with her sisters and daughters. Glenna’s paranoia kept mounting. She was afraid of falling asleep and was sure that we were involved in some sort of a shady business scheme. Hospice had us try a couple of different anxiety meds to try and calm her down, but they all seemed to have a paradoxical effect where they actually made her more paranoid and anxious. The final night she spent at our house they tried the last anxiety med in their arsenal. It’s hard to say whether she had a worse reaction to this drug or whether the sleep deprivation had built up to an unbearable point, but her paranoia that been mounting in the preceding days reached its pinnacle that night. We decided to split the night up into shifts. Danielle would take the first shift, I would take the middle of the night shift, and Noel would take the early morning shift. I can’t hardly find the words to explain that night, but Glenna was out of her mind with fear and paranoia. She acted like we were holding her hostage and kept trying to escape. Towards morning, when the anxiety med should have worn off, she refused to take her medicines from us and wouldn’t hardly let us come near her. Her strength had diminished in the previous weeks, but in her bewildered state she was stronger. It was the worst night of my life to date. Worse than any of the nights Cooper had night terrors. When Noel woke up for his shift, he called the nurse hotline and they sent a nurse over immediately. Based on our inability to stay on top of her pain meds and the fact that she had no idea where she was (when asked, she said she was in Provo on the BYU campus – a school she never attended), the nurse told us she strongly recommended a transfer to their inpatient facility.
In my heart, I knew if Glenna left our house she would never come back. The last time she’d been hospitalized there had been a moment as we were waiting for the ambulance. She’d turned to me and asked, “I can come back, right?” Her face had this vulnerable, pleading look and my heart almost broke. I kept picturing her face in that moment and felt like I would be betraying her if I let them take her away. I felt like a child and wanted someone to tell me what was right. In tears, I called called her sister, Marsha. Marsha said they would be right over, but that this needed to be our decision. Fortunately, Danielle and Noel were much calmer and more objective and realized that we really didn’t have a choice.
I pulled myself together and arranged for a friend to pick up the kids and take them to church while we figured things out. The transport ambulance came to pickup Glenna. Noel and I followed in our car. The family gave us a head start to take care of paperwork and get her settled, kindly cleaning up our house while we were away. The whole ride over I still felt torn up inside about what was happening, but the second I arrived at hospice I felt my anxiety fall away. There was a special spirit there. When we walked into Glenna’s room she was dressed in a white nightgown and sleeping peacefully for the first time in days, maybe even weeks. When we asked what they’d given her, they said all they’d done was give her a dose of pain medicine through an IV and she’d relaxed. I may never know for sure, but part of me wonders if in all of her trying not to be burden, she just couldn’t allow herself to pass away in our home.
After filling out all the paperwork and talking with the hospice doctor, Noel and I had some time to sit in Glenna’s room while we waited for family to arrive. Noel too said he’d felt a peace when we entered the building. It was peace that neither of us had felt in months. It would still be six more days before Glenna passed away, but from that point on, we both just knew that everything was going to be okay.