The first sign that something was wrong was the discoloration of his skin and eyes.
My husband Bob had turned a deep yellow because his tumor-ridden liver wasn’t able to filter out bilirubin, a bile pigment that forms when red blood cells are broken down in the liver.
That means his bloodstream was carrying toxins instead of nutrients throughout his body. This toxic liquid was affecting his organs, but most obviously, because of a change in behavior, his brain, and because he was itchy, his skin. His yellow color along with uncharacteristic bizarre statements and agitation led me to drive him to the emergency room. There, the intake nurse knew exactly what was wrong, and he was admitted and transferred to the cancer hospital.
Bob was a year out from his colon cancer diagnosis that had rocked our steady and reliable world. I had just learned to wrap my head around tests, surgery, chemo, and all the words associated with cancer that you never want to hear, when this new situation arose.
At the hospital, we learned that tumors had blocked the bile ducts in Bob’s liver, and to remove the bilirubin, a thin tube, or stent, was implanted to allow the yellow fluid to drain. The tube exited on his right side just about waistline, where additional tubing was connected to containers that filled with yellow fluid. This in-hospital drainage process lasted for several days, after which his symptoms subsided.
However, the stent was permanent, and I was instructed on how to change bandages and flush the tubing. Yellow fluid would collect on bandages, and I would remove them and clean the site, flushing the tube and applying fresh dressings. This went smoothly for a while, until the stent was no longer effective and the symptoms returned. A return to the hospital and interventional radiology involved repositioning the stent, but with cancer cells continuing to grow, the repositioning maneuvers helped for only so long.
Being a caregiver to a loved one with cancer
My husband wanted to die at home, as would I if I knew my death was getting close. We put a hospital bed in the den. The problem we faced, with me being the sole wage earner, was that I, his primary caretaker, was working full-time. I was also finishing nursing school while working and accepting freelance editing.
At one point, before freelance editing was available, I took a part-time job at a local supermarket — working overnight on the weekend so no one I knew would see me and ask questions like, “Why are you doing this when you have a master’s degree?”
With dwindling energy, I nevertheless pushed on. Believe it or not, I made time to go to the YMCA a couple of times a week to swim 20 to 50 laps, and I know that helped keep me from getting unbearably depressed. It also empowered me as I plunged through the water expelling anger and frustration with every hard, fast stroke. Swimming gave me physical and emotional strength. Communicating with caregivers and patients via the Colon Cancer Alliance’s interactive chats made me feel more supported. Playing mindless computer games was a way to have brief respite from the sadness and responsibility.
I would prepare my husband’s breakfast and lunch, and include beverages and snacks, and take them into the den in a large plastic container with a lid. He was able to use a nearby bathroom, and a nurse had a key and would stop by for a few hours while I was at work to assess and bathe him. The arrangement was good; he could read, watch TV, and enjoy the companionship of our three labrador retrievers.
But his appetite grew poorer and poorer, which is part of the downward spiral. Cachexia, loss of body mass and fat, and anorexia, or poor appetite and no desire for food, result in wasting away, causing increasing weakness and loss of independence. The result is that he began to fall. At first, with some effort on his part, I could pick him up and get him back into bed. As the wasting advanced, however, he had no muscle to put into the effort, and I honestly tried with every bit of strength I could muster, but I had to call the police to come help me. Now his physical state in terms of risk for falls was serious. I couldn’t stop working, so I began to look for a high-quality residential hospice.
Somehow, I found a Ph.D. nurse practitioner who had restored a mansion into a residential hospice. It was beautiful — exquisite paintings on the walls and ceilings, beautiful furniture, an amazing dining room with food prepared by a gourmet chef, and she was willing to admit him at whatever his insurance would cover.
Going to hospice
The day Bob was transported from our home to hospice was one of the hardest days of my life. He was very tearful, and I tried to remain strong. I felt beaten because I couldn’t fulfill his desire to die at home. I’ve talked with other caregivers who’ve gone through this too, and they know very well the pain of being unable to find the resources, often relatives from large families, to enable their loved one to die at home.
I visited the hospice daily after work and stayed for hours on the weekends, and I was even allowed to bring our three labrador retrievers from time to time. It was, nevertheless, the saddest time of our lives — he didn’t want to be there. He was in the house of the dying, and at one point he said, “You should get on with your life. You don’t need to be around a dying man.”
That was hard.
A couple of months passed and then, one night, hospice staff called me to come be with him. His time was drawing near. I rushed to the hospice. I barely remember the drive there.
A nurse counted respirations as I sat by his side.
Bob was peaceful, and I was a nervous wreck.
I asked the nurse if Bob was experiencing pain, and the nurse assured me that studies have been done and indicate that as a person is getting close to death, there is no pain sensation. I don’t understand that, but because he was peaceful, I chose to believe the nurse.
Then there were long spaces of time during which there were no respirations.
Before the end, another nurse said to me, “Give him your tears.” I looked at her but didn’t hesitate. I put my fingertips to my face and bathed them with my tears and then gently wiped my tear-soaked fingers around his eyes. He opened them and seemed so aware, but I don’t know if he was. I told him I loved him and that it was OK for him to go.
Finally, when he was gone, something made me ask and insist that they give me the hospital gown he was wearing. It was the middle of the night, the end, and I walked out alone, pressing that gown to my face because it smelled like him, and it was all I had left of his existence.
At home, I suddenly realized: I would never hear his voice or touch his hand again.
I slept with his gown right by my face that night and for weeks to months, until the smell was finally gone. Only then did I wash it.
Bob died in 2001.
I still have that gown to this day.