When Jody came home, he was assigned both a pediatric visiting nurse and a hospice nurse. On their first visits, I was handed a great deal of literature to read, including a whole notebook from hospice. I lacked both the desire and energy to read the literature and learn a whole new medical system—let alone two. I just wanted one phone number to call for help, with two or three consistent people to answer.

In actuality, the care we received was wonderful. The primary nurse would call, offer to visit if we wanted it, assess Jody’s condition over the phone, handle any questions we had, and would ask if we wanted a call the next day. She would tell us who would be calling if she was not working at the appointed time. Interestingly, the service that I found most beneficial at that time was the nurse running interference for us with the doctor. The pain medications needed to be adjusted and changed at times; advice was needed about his intake, his mouth sores, and his hand and foot inflammation. As I, along with Jody, became quieter and more removed from outside activities, even the thought of calling the clinic and being made directly aware of the bustle and demands of that world was very unappealing.

When our children were babies and learning, I always used the principle of reinforcing things I wanted them to learn or understand with all their senses: hearing, seeing, touch, smell, and taste. During Jen’s last days, we kept her room filled with light the way she liked it, and even a soft low light at night so whenever her eyes opened so she knew one of us was right there. We played her favorite music continuously, more upbeat during the day and softer choices at night, and we talked with her and then to her when she could no longer respond with her voice, although the squeeze of her hand and her big blue eyes spoke volumes.

We touched her constantly, sometimes just sitting next to her holding her hand and not moving, other times stroking her head, rubbing “udder” cream on her elbows and heels so she didn’t get bedsores. She had lost quite a bit of her sense of smell, but we kept everything very fresh and all the flowers that came to the house were all around her because she visually could remember their wonderful scent. We learned to use the great swabs that hospice provided with very cool water and a bit of mint Listerine so her mouth felt clean and fresh, especially as she became less able to take care of herself and even more so when she was no longer able to take in water and then food. One of the nurses told us to take ice chips and put them in a very worn piece of cloth and make it tiny so she wouldn’t gag and let it rest in her mouth for a few minutes at a time so she had some moisture, and when that became impossible because she could hardly open her mouth, we swabbed her lips and the gums outside of her closed teeth. All this was meant to convey the message you are loved and cared for and we will be right here for you every step of the way.

We were very fortunate in our hospice experience, which lasted a mere 8 days. On the first day, a nurse arrived to meet all of us. She came in with a big smile and introduced herself. The nurse began by taking a very complete medical history, and I remember being surprised by the depth of information she wanted. It was like she wanted to fully understand the entire journey and what he had been through, while I suppose I had expected her to laugh off with disinterest everything that had happened before “the end,” as if it wouldn’t matter anymore. She listened intently, reacted appropriately at incidents that had been a bit unusual, and wrote down a great deal. Then she did a brief exam, just blood pressure, pulse, and general appearance, and assured him that she wouldn’t bother him anymore. He relaxed when he realized that she wouldn’t be poking him as so many others had already done. We had been apprehensive before her arrival, but afterward, it felt like the night crew had arrived after a very long day shift.