I didn’t know much about hospice before Mom died. Hospice was called the year before when Dad had a massive stroke, but he went so quickly that I didn’t learn much about what hospice was about. All I knew was that the hospice nurse called the necessary people to handle the necessary paperwork. I showed my ignorance in a short conversation with her.
“I guess this makes your job a little less heart wrenching, when the patient doesn’t linger for a long time.”
“Oh, no,” she said. “I hate it when they die quickly before I have a chance to get to help them. I worked with a patient recently who, at first, was in so much pain that he couldn’t get out of bed. More than anything he wanted to see his grandson play soccer. We were able to make that happen. Hospice doesn’t help a patient die but rather helps him make the most of the time he has left.”
That experience should have left me more prepared when Mom’s time came, but it didn’t. She was in the advanced stages of Alzheimer’s, but she was physically healthy. Then she developed a skin condition with a long Latin name, and the secondary infections it caused resulted in protracted hospital stays.
In a very short time, Mom could no longer get out of bed without help and had to be propped up to sit in a chair for a few minutes. The physical therapist told me there was nothing more she could do for Mom because she wasn’t able to respond, but I didn’t hear her. I clung to the hope that when the infections were brought under control, Mom would get her strength back and things would go back to “normal.”
I didn’t accept the fact that the treatments she was receiving were doing more harm than good. Mom pulled out so many IVs that her veins collapsed, and she cried from the pain when the nurses tried to find another vein. A surgeon put in a pick line, but after he put in the third one, he said he couldn’t put in another one if she pulled it out again.
The charge nurse on Mom’s floor was very understanding and very patient. She listened to my concerns and answered my questions, and then one day she asked if we would consider talking with hospice. I didn’t hear that at first either, but after I recovered from the shock, I began to ask questions and to listen. My brother and I, along with our supportive spouses, made an appointment to meet with a hospice representative.
It was hard to hear his words, even though he said them with extreme gentleness, and it was even harder to watch him write Mom’s names on the forms. It felt like we were not fighting hard enough, but the more we talked and the more we learned about the process, the more I realized that we were focusing on giving Mom the best quality of life in the time that was left to her.
Hospice worked with Mom’s care facility so she was able to return to familiar surroundings with familiar people. They provided a hospital bed that was placed in her cozy little room where she was surrounded by her favorite things. They provided a Geri chair so she could spend time in the common areas with other patients. The focus switched from curative treatments which were often cold, sterile, frightening, and painful to care that was filled with love, support, and comfort.
I lived in another state, but during my limited visits I observed the tender care she was given by the hospice nurse who came in to take check on Mom each day. I watched the caregiver who carefully chopped her food and kept up a cheerful one-sided conversation as she fed her.
Mom passed away in her sleep after a good day. She spent the afternoon in the common area enjoying the antics of a visiting therapy dog. She ate all her dinner and went happily to bed. When the floor attendant made her regular bed check a couple of hours later, Mom had a peaceful look on her face, but she was gone.
Calling in hospice felt like giving up, but it wasn’t. It was the next step in the natural process of life which, one way or another, eventually comes to an end.