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Authors: Jai Pausch

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BOOK: Dream New Dreams
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I had been in bed for only thirty minutes when I heard Dylan crying out for me. For the next several hours, I helped him to the bathroom, holding his head over the toilet or cleaning him up after an accident. Around one in the morning, Chloe woke up crying for her bottle. But I couldn’t go to her. Dylan was still vomiting. He needed me most, and I knew she wouldn’t die if she missed one feeding. Still, the guilt welled up inside me. Then Randy appeared and offered to give Chloe her bottle. He had been asleep in the basement while all this was going on, so I was surprised to see him. After the baby was fed, he went back down to sleep in the basement, and I continued to care for Dylan. By four a.m., I was exhausted. I hadn’t slept all night and had been busy the previous day. I went down to the basement and asked Randy if he would watch over Dylan for an hour so I could get a little sleep before the other two children woke
up. There wouldn’t be a sitter coming on Saturday, and I would have to care for the baby and our energetic toddler along with Dylan.

I was blindsided by Randy’s reaction. He was furious at me for not taking care of myself during the day in case I had to handle an all-nighter by myself. In his weakened state, the flu could kill him, he said. Here he had subjected himself to surgery and a painful two-month regimen in order to give himself the best chances of surviving, and I was jeopardizing his odds by asking him to take care of Dylan. In that moment, I felt just awful, like a failure for not being able to juggle everything by myself, for having to ask Randy for help when he was so ill, for not being better prepared for inevitable moments like sick children, for not having a backup plan. This is what it’s going to be like when I’m a single parent, I thought, so I might as well get used to it. It became crystal clear to me in this moment that I had to change my mind-set. We weren’t a normal two-parent family anymore, and I couldn’t fall back on Randy for help. I needed outside help, and I had to ask for it, fast.

At six in the morning, I called my next-door neighbor, who I knew was an early riser. I explained what was happening and asked her to please come over. Then I sent out e-mails to all my friends and sitters, asking if someone could help with the children that day. A new morning, a new beginning, a new strategy. I started acting like a manager, delegating responsibilities and doing the things only I could do. Even though I accepted this direction as the best for me, the children, and Randy, my conscience was at war with itself.

In my mind, it was my responsibility as wife and mother to be tireless in caring for the children and Randy. Moreover, I was raised to be self-sufficient, independent. Not meeting my family’s demands and accepting help from others would mean I was a failure.
I also didn’t want to be an arms-length mother! I wanted to be directly involved in their lives, putting Band-Aids on boo-boos and going to play dates with them. I didn’t want to let go of my old life, the way things were, and accept what the circumstances of the moment dictated. I felt as if I was being buffeted about in a tumultuous sea where the waves were crashing over my head and no land was in sight. Of course it didn’t occur to me that I was being an even worse mother and wife by wearing myself down and taking it all on the chin.

I also imagined that this was for only a short period of time in the grand scheme of things. It wouldn’t always be like this. I would be able to go back and assume the reins again. But poor Randy! He could see the big picture long before I could; he just couldn’t get me up to speed. He was so frustrated with me, so disappointed that I hadn’t adjusted more quickly to our changing family dynamics. And he felt abandoned by me because my attention was divided. I was not as focused on him or his fight to beat the cancer as I needed to be. This was not a new issue in our relationship, but rather one we had worked through many times since the arrival of children. How I divided my time between the children and Randy was a dilemma more emphasized by Randy’s illness. In addition, Randy prided himself on his time-management skills, so he could be quick to criticize how others managed their time. He believed in using time wisely and efficiently and often gave talks on the subject. He was so tuned in to how he used his time at work that he would keep an electronic log of how many minutes he spent on certain tasks, then he would evaluate the data and decide how he could work more productively. Because he did this exercise for his own time, he felt others could and should do it for theirs. I hadn’t truly embraced that approach in my personal life, and Randy was critical of how I chose to allocate
my energies. He was a very smart man who trusted his intellect and his ability to make sound decisions in any given situation. I wasn’t as smart or as quick as he was, and I think it tried his patience—not that he loved me any less, but I think he felt he could make decisions better than I. In the past, I had often pointed out to him that if he made decisions for other people, then it wouldn’t be their lives they were living. Not being the best time manager or having a backup plan for illnesses might not seem dire in a normal circumstance, but it played out as a complete disaster in Randy’s mind. As a compromise, I agreed to rearrange my daily schedule to allow more rest for me and to go to bed at an earlier hour.

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

E
VEN 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.

BOOK: Dream New Dreams
13.31Mb size Format: txt, pdf, ePub
ads

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