I set up my home office at the dining room table. Computer, files spread everywhere, it didn’t matter, as long as I had a view of Amy. She and her laptop took up residence on the family room sofa, where she spent hours at a time wrapping up some final projects and working on something new that she was determined to finish, which would become her last published work.
I would be remiss not to mention that the stress of home hospice care was assuaged by the incomprehensible, undeniable commitment of each one of our children. The emotional and physical support I felt from them—and feel to this day—got me through the roughest of moments of home hospice. Paris took time off from school and was by her mom’s side for the duration of our hospice experience. She was tender with her mommy every moment they were together.
Paris had become this incredible blend of stunningly beautiful and confidently strong. She’d somehow acquired a pair of magical blue eyes that pierce one’s soul. Amy saw right into the center of those baby blues like no other person in our daughter’s life. They shared inside jokes, phrases only the two of them understood, and unique skills like board games and list-making; they dreamed about each other and, when in each other’s company, could often be found in an embrace.
From a very early age, Paris was tenacious. I remember instructing her when she was all of four years old, starting youth soccer: “Now, you know how you have lots of really good friends? Well, this ball right here is not your friend, so go get it!” or something to that effect. From that age forward, Paris was an above-average athlete. More important, it was the manner and method to her approach to sports that set her apart. As with other facets of her life, she was intensely hardworking and organized in her athletics. She stayed thirsty for methods of practicing and exercising that would make her better. As a high schooler, she loved to play basketball. We spent many days together alone in a Chicago Park District gym shooting and dribbling. She was hard on herself, but persistent. If she was going to play hoops, she was going to be the best version of herself at that sport. This characteristic of hers later applied to almost anything she set out to do. A culmination of her intense work ethic happened in her senior year of high school.
It was in her final year that the women’s basketball team had to disband due to lack of interest by enough female athletes. So what did Paris do? She lobbied the administration and challenged the league rules to allow her to play the season on the boys’ team. Correct. She became the first female player in the history of her school to play a basketball season on the boys’ basketball team. At the end-of-the-year banquet, the parents gave her a standing ovation in recognition of her integrity, her hard work, and her sportsmanship throughout the season. This was typical of how she continues to conduct her life as a young adult today. Having Paris by my side during home hospice, as a tender supporter of her sick mother, as well as my health-care partner, helped me get through these very dark times.
And, as if to mimic the Marvel superheroes they have loved their entire lives, Justin and Miles would commute from out of state every weekend. Somehow, Miles, who was in his senior year of college, managed to graduate on time.
And then there was Justin. Take a cue from my eldest, Justin. He just knew how to communicate. From the moment he knew his mom was in hospice, he made a choice. He was not physically with us every day in hospice, but he connected with Amy every single day. That’s right. He picked up the phone and called his sick mom each day to connect with her. When Amy talked with him, even if it was a brief moment, Amy lit up brighter than the most beautiful candle we had burning at the time. Such empathy from a young man—yes, a millennial—can teach us a thing or two about devotion, love, and connection.
If I had to make the same hospice decision all over again, there’s no doubt about it, I’d still choose home. But parts of it bordered on unbearable. It was nothing compared to what Amy was going through, just as tough and emotionally challenging as life can get.
Basic daily activities. Who gives them a single thought? Pulling open the refrigerator door? Big deal. Going to bed? Walk into your bedroom, turn out the lights, and call it a day. Going to the bathroom? So what? Now, in our “new normal,” those things all became hills to climb. Asking Amy to open anything, from the refrigerator door to a bottle of medicine, was like asking her to bench-press three hundred pounds. Walking upstairs to our bedroom was as exhausting for her as running a marathon. And during all those years we raised children together, not once in my wildest imagination did it occur to me that someday I’d need to use my diaper-changing skills on my wife. Did it ever enter my mind to complain or feel put-upon about any of it? Not even once. As much as it was to deal with, I just kept wishing I could do more.
Her inability to eat, which went on longer than anyone thought she’d be medically able to sustain, meant watching her shrink, right before my eyes. You know how your memory often consists of thousands of mental snapshots of different phases of your life? Well, during our home hospice experience, I only saw Amy as Amy, the love of my life, the woman I’d promised to take care of, in sickness and in health. As I look back, though, I can see how her steady weight loss and the disease that was eating her alive morphed her into “that look.” You know it when you see it, that sunken, almost skeletal shadow you keep wishing you were just imagining; and somehow it only deepens your love from one day to the next.
If my memory serves me correctly, our doctors were vague about the subject of physical intimacy. I won’t be. The possibility of being intimate in any physical way disappeared early on after Amy’s diagnosis of a terminal illness. At the same time, I can honestly say that as Amy progressed through her disease, our intimacy actually became more profound than it had ever been at any point in our relationship. I still remember a moment during one of Amy’s early hospital visits. I was in her hospital bed with her, holding her, with her tears falling on me, and she looked up at me and quietly said, “I just want to be normal again.” That may sound like a simple, obvious plea. But coming from a superstrong woman like Amy, who never, ever complained or asked for anything, it was like a pure, honest, intense vision into her soul, and a whole new level of intimacy between us.
There was only one aspect of her home hospice care that, I admit it, I just couldn’t deal with. Amy’s bowel obstruction had caused a fistula—in the most basic layman’s terms, an opening in the body where there shouldn’t be one. Occasionally waste would make its way through that opening. It was extremely messy, very smelly, and almost unbearable to clean up after. Amy’s mom and I did our best, but the wound care was way beyond my sensory limits and health-care skills.
In case you’ve ever wondered, there really are angels in this world. Ours was named Margaret. She was a wound-care nurse who’d worked for our dear friends Wendy and Jimmy. She took care of the wound, and the mess, and the smell without batting an eye. She couldn’t have been more diligent, more professional, and more tender when it came to keeping Amy clean, which wasn’t easy.
After Amy died, Margaret shared a story with me:
You may not remember this, but I’d just finished helping Amy in the shower. When she was all clean, we got out. I was in my clothes, of course, and I was as wet as she was. Amy had a big fluffy towel, and you offered me one, but I didn’t really need it. Then, as we were walking back to your bedroom, she stopped at the closet and offered me one of her sweaters. Of course, Amy was a very small lady—tiny, in fact. And I’m not. I would have had to knit at least three of her sweaters together to fit me. But there she was, so sick, in so much pain, facing death, and she was worried about me getting cold. I’ve known a lot of good, kind people in my life, but I’ve never known one as kind as Amy.