by Jai Pausch
However, there was a bigger life lesson than time management for me. From the stomach flu episode, I came to understand that being strong doesn’t mean not asking for help, nor does it mean not being scared. This is probably one of the greatest lessons I’ve ever received. I needed to offload some of my responsibilities and free myself a little to manage the load better. I had to admit that I could no longer be the same kind of mother I had been when Dylan was little; it wasn’t possible. I could not be with the kids and be with Randy in the oncology wards. I had to ask for help—and lots of it. I couldn’t cook dinner every night from scratch using fresh vegetables from the farmer’s market, so I gratefully accepted dinners of any kind from the families at my sons’ preschool. I don’t know if they used organic produce, and I learned not to give it a thought. I ordered take-out dinners using a gift card generously provided by my husband’s colleagues at Carnegie Mellon University. I even took people up on their offer to unpack my family’s possessions—yes, even my clothes and underwear—to get us back into our newly renovated house in Pittsburgh. Was I a lesser mom, wife, and woman for this? No! In fact, it made our lives better to let others pitch in. I had more energy to devote to all of those around me; I wasn’t so stressed out and grouchy. It made life seem more manageable, which in turn lightened my mood.
I not only had to accept the idea of help from others, but I also had to come to terms with people being in our house more often and on a more intimate footing than normal. I had no problem with friends and neighbors helping to unpack our sheets, towels, or children’s clothes, but when it came to my things, someone putting my clothes in the closet or in the drawer made me feel uncomfortable even though I knew it was saving me valuable time and energy. I also happened to overhear my neighbors commenting on our laundry room setup; we had two sets of washers and dryers. I wanted to go in and explain how one of the washers was from my grandmother, who no longer could operate it due to dementia, and the second dryer was an old one left in the house by the previous owners. I felt I had to justify our choices by explaining how Randy had thought it would be good time management to have a second set because we were so often washing sheets and children’s clothes. But I didn’t say anything to them; I quietly walked away. I didn’t feel I should be scrutinized, nor should I have to justify anything. I didn’t want my lifestyle exposed or to be judged for how we had chosen to set up our house or anything else. My life felt very transparent, very public, but I didn’t feel I had the right to complain, since we needed the help so desperately. I kept telling myself this was a small price to pay and to be grateful. Randy didn’t seem bothered in the least by people’s presence in our house or their handling our more intimate things. He was never very attached to things, nor did he pay any mind to what other people said. Moreover, he got to stay ensconced in his office working on his computer while I managed the logistics. So he was not only mentally distant from the goings-on, but also physically distant as well.
Looking back, asking for help sounds reasonable. But it was an emotionally charged issue for me and a hard lesson for me to learn. Even when I agreed to accept help, I still had to get my head in a good place about receiving it. I had to change not only myself but my image of myself in order to find peace. Finally, I had to accept that asking for help is a sign of intelligence and strength. When you are in difficult straits, identifying the areas where you need an extra hand or a smarter brain takes honesty and courage.
When people say to me now, “I don’t know how you did it,” I proudly respond, “With a lot of help from a lot of wonderful people.” Many of our friends and family seemed to know intuitively how to help. They would see something that needed to be done, do it, and then ask permission later. It could be as simple as starting some laundry or cleaning up the kitchen. I loved it when people gave me lists of specific tasks they could do for me. I appreciated not having to expend energy generating a to-do list of my own. I’ve been asked repeatedly by folks who want to help a friend or relative who is a caregiver what they can do to make a difference. My answer is: everyday tasks like housekeeping, grocery shopping, fixing dinner, or doing the laundry. I also found that friends coming over to sit with Randy, talk with him, massage his back, or watch television with him gave me great peace of mind and gave Randy the companionship he needed.
But there’s a fine line between being helpful and imposing. There were times when I’d had a terrible day and I’d want a little downtime to decompress, to sit quietly without anyone else around, without the obligation to be social—a time when I could loosen the stranglehold on my emotions. Sometimes, a well-intentioned friend would misread my mood as being one in which I needed a shoulder to cry on or an ear for listening. I would try to be polite and explain that I was tired and needed rest, but that person might not be using “listening ears,” as preschool teachers like to say. She might insist on staying at our house until the dishwasher had finished running so she could put away the clean dishes, even after I had explained that what I really needed was to go to bed. Finally, I would leave my well-intentioned friend sitting by herself at the kitchen table while I went to find some solitude.
The Toll of Caregiving
EVEN WITH LOTS OF HELP from family and friends with the children, I still found myself exhausted by day’s end. Every night I would be in bed by ten p.m., striving for eight hours of sleep, minus time feeding the baby and taking care of the boys during the night, if necessary. My body felt like a lead weight as I slipped gratefully under the covers and turned off the lights. But instead of falling into a deep and peaceful sleep, my brain continued to spin as I tossed and turned, trying to find a more comfortable position. Thoughts came relentlessly. Some were unusually outlandish worries, and they would fester and grow as I allowed myself to fall down that black hole of “What if …”
One particular internal dialogue went like this:
What am I going to do if there’s a fire in the house? How am I going to get the children out safely? I’d mentally chew on it as I lay in bed by myself with the children asleep down the hall and Randy ensconced in his basement retreat.
Which child should I go to first?
Maybe Dylan—he’s the oldest and the most self-sufficient.
But how am I going to get him from the second floor to the ground without him getting hurt?
I pored over the possibilities. My mind continued to whir.
I know. I’ll tie the bed sheets together, tie one end around his waist, and lower him to the ground. Then he can run next door and get help.
What about Logan? He’s only two years old. Would he be able to get down the same way?
Yes, this should work for him, too.
Without pause, my thoughts moved right to Chloe: I think I could lower the baby to the ground.
OK, now I’ve solved the problem if a fire breaks out downstairs. Great! Now I can rest easy. I can sleep.
But no, my synapses continued to hum: What if the fire starts upstairs? And what about Randy in the basement? The moon would slowly move across the nighttime sky while I worked through ever more scenarios, trying to contemplate what seemed to me plausible threats to our family. Bad things happen to people, and now I had learned we were vulnerable, living in a hostile world that didn’t care how young Randy was, nor that he took care of himself, nor that we had three young children. Nothing shielded us from being one of those families one reads about in the newspaper or sees on a television show and one thinks, “There but for the grace of God go I!” Having just experienced two of the worst months of my entire life, I knew all too clearly how catastrophe could tear your world apart. I wanted to be prepared for the next time. I didn’t want to be blindsided once more, as we had been when Randy was first diagnosed with pancreatic cancer. Though it was unreasonable to think I could plan for all possible challenges before they arose, I still tried—an attempt to feel that I had some control over my life. Cancer had left me feeling so vulnerable. My response was to create a sense of mastery over events in
my life.
I wish I could have been lying next to my husband, turning to him to help me through these sleepless times. I had so many wonderful things to appreciate, to celebrate with him—how our family was growing, how we had remodeled our house to accommodate that growth, and how beautiful the moon was on these wintry nights. Together we had put so much thought and energy into the house project. This was our dream home, where we were to raise our family and where Randy and I planned to live until the children were grown and Randy retired from the university.
But Randy and I were in some ways worlds apart now. Instead of sleeping upstairs in our master bedroom with its beautiful windows looking out over the amazingly large city backyard, Randy was sleeping in the basement with the heat jacked up. The physical distance between the two of us translated into an emotional one. I was constantly tired from wearing so many hats—caregiver, mother, and house manager. I woke with Chloe at around one a.m. to give her a bottle, and then I was back up at six a.m. when the two boys were ready to start the day. I felt as if Randy didn’t appreciate all that I was doing and how hard I was trying. For his part, he believed I wasn’t spending enough time with him, that I was afraid to sit with him and be near the sick guy. Our wounded feelings festered until a couple of our friends suggested we see a counselor. They went so far as to argue that if Randy survived the cancer, our marriage might not. But we didn’t need a marriage counselor; we needed someone who knew how to help people dealing with life-threatening illness and all the chaos and stress it could bring.
During a visit to our local Pittsburgh oncologist, Randy asked for a recommendation for someone we could talk to who had experience with people in our situation. The oncologist knew of a psychotherapist who worked with cancer patients and their families. And that’s how we met one of the most wonderful, kind, insightful, and intelligent people I have ever met: Dr. Michele Reiss. We were fortunate to find a local practitioner who focused on mental issues that arise in battling cancer.
From the first time we started talking with Dr. Reiss, she became an integral part of our cancer team. Whereas the oncologist and the platoon of other doctors focused on the physical aspects of Randy’s cancer—how to stop the disease from spreading, control pain, monitor nutrition, and prolong life—Dr. Reiss’s specialty as a psychotherapist addressed the mental health issues. Stress is something we all experience, but in excess and over long periods of time, stress has a profound effect on a person’s mental and physical state. More and more medical studies are studying the impact of stress on both the cancer patient’s and the caregiver’s health. In particular, caregiving stress has been found to increase the caregiver’s susceptibility to infectious disease and depression. The caregiver is also more likely to suffer premature aging, a measurable decrease in life expectancy (some studies suggest between three and ten years), as well as risks associated with sleep deprivation.* Who would have thought that being a dutiful loved one would take years off your own life or make you sick!
Because the risks associated with stress and the impact that caregiving has on the individual are now coming to light, I hope that more oncology practices will shift their treatment paradigm to encompass more than just the physical aspects of cancer. Currently, many cancer centers and oncology groups maintain a wonderfully strong team of doctors, from radiologists to oncologists to surgeons. However, they neglect the psychological aspect the disease brings with it. Cancer specialists address nutrition and pain, yet they ignore how devastating it can be to live with cancer or face death as the disease spreads to other parts of the body. Moreover, medical science and technology have made significant strides in slowing or stopping cancer cells from multiplying. As a result, a patient often lives longer with the disease in remission. However, a person surviving longer with cancer or other illness presents a new set of challenges that need to be addressed. One of these is how to offer support to both patient and caregiver as they strive to not only live their lives, but maintain a quality of life. Counseling could help address some of the needs. Randy and I were proactive enough to find a therapist to help us, but others might not go that route and need to have the resource offered to them.
As Randy admitted in The Last Lecture, he was not a big fan of psychologists. But after working with Dr. Reiss, he understood the benefits: “Now, with my back against the wall, I see how hugely helpful [counseling] can be. I wish I could travel through oncology wards telling this to patients who are trying to tough it out on their own.” Randy held very strong opinions, and it took a lot to get him to change his position on a subject. So it is a testament both to how much he suffered emotionally and to Dr. Reiss’s exceptional abilities that Randy embraced therapy.
When we first stepped into Dr. Reiss’s office, both Randy and I were feeling disappointed in each other. One of the first things she did was to have us listen to each other. I mean really listen to what the other person was saying. We realized that even though we were going through Randy’s cancer together, our individual experiences were unique and valid. For his part, Randy experienced daily pain after the surgical procedure to remove the tumor, as well as terrible side effects from the chemotherapy. On the other hand, I was trying to maintain a normal routine for our three children, provide the best care I could for Randy, and manage our household. Randy communicated to me that he wanted to do everything he could to maximize his chances of living. To achieve this goal, he had to make the treatment and any additional options his highest priority. He would push his body as hard as he could by taking the highest chemotherapy dosages allowed, and he wanted my support for him during that time, regardless of what he looked like or how bad he felt. For my part, I explained to Randy that I felt I had to be the one who dealt with the issues of the moment, whether it was his feeling terrible and needing extra attention or filing our taxes or investigating kindergarten options for Dylan, who would start school in the upcoming fall. Our roles and points of view reminded me a lot of Virginia Woolf’s To the Lighthouse. Mr. Ramsey can’t see the red-hot poker flowers his wife admires growing around the house, but he can look up into the constellations and appreciate the stars, which she in turn cannot see. A similar dichotomy existed for Randy and me. Here we were a team, a united front, fighting pancreatic cancer to save his life. And yet we were coming from two different places that made it difficult to understand the other’s commitment and contributions to the team effort. Listening to each other and respecting the different ways we were going through this experience helped bring us closer together. Our marriage stayed strong as we continued to walk this difficult path together.
Another issue Randy and I shared was stress-induced paralysis. We simply were unable to make a decision. This was most apparent in our need to choose a school for Dylan. Pittsburgh is a wonderful city that offers a full spectrum of educational options, both public and private. In the public sector, there are neighborhood schools, magnet schools, charter schools, and even an elementary school using the Montessori approach. On the other side of the coin are the independent schools offering traditional and nontraditional educations. Before Randy became ill, I had done a modicum of research into which setting would be best for Dylan. But since Randy’s diagnosis, I had not been able to devote any time or energy into making a decision. Now in the spring of 2007, our window to enroll him was closing. We had to make a choice soon. After I had narrowed down the selection to just a few schools, Randy and I evaluated the options together, but we couldn’t decide. So we visited the schools. Randy would unleash his sharp mind on the unsuspecting principal, who would be grilled for a good half hour. Randy would ask how the school would handle various scenarios, including what offense would have to be committed for a student to be kicked out of the school by the end of a school day, as well as questions about how the school allocated its funds. Even after gathering all this information, we still couldn’t decide. Each question was preceded with the hypothetical, “If Randy should die of cancer …” Should we go with the private school located three
houses away so I could easily walk Dylan to school with two little ones in tow? The magnet school might offer Dylan more educational enrichment opportunities, but it would be a longer bus commute. As the deadline loomed, our anxiety rose. During one of our sessions with Dr. Reiss, we explained our dilemma and asked her advice. Dr. Reiss showed us that we were allowing the stress and fear of living with cancer to prevent us from living our lives. Just as I would lie in bed at night working through every possible problem that might arise and how I would deal with it, Randy and I were doing the same thing with school choice. We were envisioning every possible scenario that we could think of, exhausting ourselves in the process, not realizing we could never conceive of every possibility.