Thursday, September 18, 2014
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Living through the last month

A husband’s last weeks found his wife unprepared — and wishing she had asked more questions.

The author and her husband just before his first surgery for a brain tumor in October 2007. (Karen Kasmauski)
The author and her husband just before his first surgery for a brain tumor in October 2007. (Karen Kasmauski)
The author and her husband just before his first surgery for a brain tumor in October 2007. (Karen Kasmauski) Gallery: Living through the last month

I was watching my 12-year-old son play soccer on a beautiful late September morning when my husband called with the kind of news that divides a life into before and after.

A neurosurgeon had seen his MRI. He thought Jeff had glioblastoma, a malignant brain tumor. We would need a biopsy to be sure, but there was little doubt.

My husband, who was in the hospital on powerful pain pills, didn't fully understand. I did. I knew he would almost certainly die, and soon. I would be a widow. The long-legged boy loping on that sunny field would lose his father. His 16-year-old brother would never again be able to complain that our idyllic suburban life gave him no subject for a college essay.

But 2 1/2 years later, when it was clear that science had nothing more to offer my husband, I discovered I was unprepared for what had been completely predictable - his death. I knew it would be an emotional ordeal, but the mechanics of it took me by surprise. Even after years of medical reporting, I didn't understand how people with cancer die or how physically and emotionally demanding it is to take care of them at the end. So I, like millions before me, would learn the hard way during the worst month of my life. We put a lot of effort into helping people live with cancer, but not enough into revealing what it will be like to die of it.

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  • Jeff and I had had many painful conversations over the previous two years. We talked about his living will, what kind of funeral he wanted, and where he wanted me to scatter his ashes. I'd asked about his passwords, life insurance, retirement plans, and his friends' phone numbers. He'd taught me how to change the furnace filter and start the lawn mower, and he'd taught our sons to grill - formerly mundane tasks that became achingly poignant. I had had to tell him when he could no longer be trusted to drive, pay the bills, do his work or, finally, perform his last remaining job: loading the dishwasher.

    I thought we were pretty good at facing facts, but the last month of my husband's life took me into territory so foreign that I could not fully anticipate the problems I would face.

    Over the years, I've seen papers from health-policy experts who wondered why more people don't die at home when that's what so many want, when that is where you have the best death. The answer now seems obvious to me. Taking care of the dying at home is harder, uglier work than many people can manage, especially with the amount of help that our health-care system provides.

    My husband did well for most of his illness. A writer, Jeff finished two books after his first surgery and he retained his patient, amiable nature as he struggled to adjust to increasing disability. He was able to take care of himself until almost the last month, though the first major sign of impending death appeared well before that. He started sleeping more than the cats, and I grieved for the precious moments he was squandering.

    The other changes in this once quick-witted man - the guy who always won at Scrabble - began with glacial slowness. Then they came exponentially faster, like Alzheimer's disease on steroids. He couldn't handle the taxes. He forgot to take showers. His spatial skills became so bad that he got lost in our house. He couldn't tell time. He'd forget that he'd already had breakfast and eat again. After 21 years of marriage, he couldn't remember which side of our bed was his. He mistook the kitchen trash can for a toilet. He couldn't figure out how to use a phone. I had to pull him with both hands through unfamiliar buildings because he could no longer walk normally or navigate. I bought Depends, just in case. Two days after we started using them, he asked, "What do you figure our last name is?"

    I had asked what the end would be like. Maybe not with my usual reporter's zeal, but I had asked. My questions were brushed aside, perhaps because my husband was with me, perhaps because the doctor thought it would be too upsetting. But as the cancer destroyed more and more of Jeff's brain, I began to wonder whether the distress my ignorance was causing was worse than knowing the truth. When I asked again a couple months before his death, an oncology nurse gave me Donna's number. Her husband had died of brain cancer a few weeks earlier. She told me about climbing into bed with him to spoon-feed him. She talked about roping neighbors into helping her change his clothes. She mentioned using a towel to move him on the bed. Why a towel? I wondered when we hung up. I still didn't get it. I didn't even know which questions to ask.

    Jeff was in a pre-hospice program by then, and I was working at home to keep an eye on him. By the second week of February, his home nurse said I should start thinking about a hospital bed. Jeff was still walking. I knew I would never sleep with him again once that bed came. I put it off.

    That Thursday, a friend took him to a movie. Jeff had fun, but came home tired. After his friend left, Jeff teetered precariously in the living room. I rushed to help him and learned to my horror that I had completely underestimated what caring for him would be like. He didn't understand he was falling. I'm a strong woman, but, as I felt his weight against me, I panicked. I knew I would not be able to pick him up if he fell. I yelled for our younger son, who was 6 feet tall by then. We struggled to get his father in a chair. Fear coursed through me. Why hadn't anyone told me I would be this helpless?

    I enrolled Jeff in hospice the next day. I asked our hospice nurse to order the bed. It would arrive the following Monday.

    But Sunday - Valentine's Day - Jeff couldn't walk. And he didn't know it. Luckily, he slept most of the day, but he was awake enough to fall three times. Our friends Herb and Patti brought us take-out Chinese. Herb lifted Jeff out of the bed and rolled him to the kitchen table in an office chair. We had a remarkably normal dinner. Afterward, Herb, who had caregiving experience, took my husband to the bathroom and brushed his teeth with a gentleness that was awe-inspiring. I marveled that something so beautiful could happen on such an awful day. I was wide awake all night, restraining Jeff so he couldn't get out of bed, counting the minutes till the hospital bed with its comforting side rails would arrive. I swore I would always always always listen to the nurse from then on.

    Friends began bringing food. I joked that, as I dealt with leaky diapers and accidents, what I really needed was bleach. I learned about draw sheets and Chux and Thick-It and morphine. I prayed that bowel movements would come when the aide I'd hired was there. I roped friends into assisting with changing clothes. A relative came to help. I couldn't have kept my husband at home without him. I learned that Donna was feeding her husband because he, like Jeff, had forgotten how to swallow. I chopped Jeff's food, then pureed it, then switched to a combination of yogurt and juice - Donna said her husband liked apricot nectar at the end and, inexplicably, mine did too - I gave it to him through a medicine dispenser. When even that made him choke, I gave up.

    Three days before he died, a visiting friend asked him how he was feeling. He'd barely talked for days, but, in a last act of kindness that still makes me cry, he said in a startlingly strong voice, "I feel very well cared for." The next day, I felt my own chest tighten as I listened to him breathe, raspy and uneven, his mouth agape. And then, on March 2, 2010, I watched his breathing stop. The death itself was almost imperceptible, so stealthy that it was hard to believe it had happened until I felt Jeff's skin cooling.

    In one final surprise, I watched the morticians zip my husband inside a body bag and load him into a dark SUV.

    I wasn't sorry I had chosen to care for Jeff at home. Our sons could spend more time with him there and it was a less somber, less sterile setting than a hospital or inpatient hospice. His care was more loving, if less competent. This was the fulfillment of my marriage vows, a final gift to a man who had been a steadfast, loving partner and wonderful father.

    Still, I wondered how I could have known so little about what the end would be like when there had been so much warning. The hospice chaplain gave me information about signs of death, but the process was well under way by then. I asked the aides to teach me tricks of the trade, and they did, but it seemed I was always behind the curve.

    Like many of us, I had been lucky enough to have encountered very little death in my life. I knew people whose parents had died, but people don't talk about the nitty-gritty of death, like how it feels to give raspberry-flavored morphine when you know you're choosing between pain control and length of life. I didn't want to hurt Jeff's feelings by reading books on caregiving when he didn't need it; when he did, I didn't have time to read.

    I came to wish that I had asked more questions, more insistently, and that the doctors and nurses who worked so hard to keep my husband alive had talked openly - before there was a crisis - about what my role as a caregiver would be like when their work was done.



    Contact staff writer Stacey Burling at 215-854-4944 or sburling@phillynews.com.

    Stacey Burling Inquirer Staff Writer
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