In early September, when his doctor told Sandy that he was too sick to remain on the liver transplant list, he also suggested thinking about Hospice. Sandy said he would, but when we came home that day and I said I would call Hospice in the morning, he balked. “No, not yet.”
I was surprised. Many years ago, Sandy and I had talked about his fear of having to ever go to a nursing home. He was adamant that, when the time came, he wanted to die at home so he took out long-term care insurance that would pay for home health care. I had promised him that, should the time come when he needed such care, we would bring in Hospice and I would do my best to keep him at home.
Just a few months ago we had talked about this again and he agreed that having help from Hospice would make it easier for both of us so his reluctance now surprised me. “Sandy, the doctor said you likely only have six months, maybe nine. Hospice could help you live your life the best way possible in the remaining time we have together.”
He looked at me sadly and replied “I’m just not ready to die and calling in Hospice seems like admitting defeat.”
“Don’t you believe what the doctor said, that because the cancer has spread you are not eligible for a transplant? Do you think that we should get a second opinion?”
He thought a moment. “No, both the oncologist and the liver specialist have said there is no further treatment and I accept that, but I’m just not ready for Hospice.” He spoke firmly and I knew the subject was closed for now.
After I helped him get ready for bed and shut out the light, I made a cup of tea and sat in my favorite chair. I felt overwhelmed with the thought that there would be no transplant. At this time next year I would be alone. I knew Sandy’s reluctance to bring in Hospice was a very common reaction among people who are dying, but I also knew that Hospice would help Sandy, and all of us, to better endure the coming months.
The next morning, after Sandy finished his usual breakfast of oatmeal and orange juice, I asked him why he didn’t want to have Hospice. Again, he said that he just wasn’t ready. I asked when he would be and he said he didn’t know but it wasn’t now. He slowly got up from the table, went to his recliner to read the paper and the conversation ended.
The month of September was challenging. I could see Sandy weaken a little each day. He was eating less, sleeping more, and seldom wanted to have a conversation. My heart ached for him, but my mind knew that I, too, was wearing down. My adult children and Sandy’s nieces were helpful, visiting with him and allowing me time to do errands and even occasionally have lunch with a friend. However, the accumulation of seven years of caregiving had exhausted me and I needed more help.
An incident happened that was, for me, the turning point. Walking out the door one morning to refill his many prescriptions, I saw Sandy trying to hurry to the bathroom. I came back just in time to see he didn’t make the toilet. I had never seen him so debilitated and wanted him to go to the hospital. He refused, saying all he needed was rest after he cleaned up the mess. He could barely stand. I took a deep breath, told him I would do it after I helped him shower, put on clean pajamas and get into bed.
It took a long time to clean the bathroom. Sobbing as I scrubbed, I wondered how long I could continue watching him suffer while I agonized over questions like “Should I have made him go to the hospital? What if I had actually left for the pharmacy and he was alone when this happened?” If we had Hospice, the pharmacy would have delivered the drugs to the house and a nurse would have come out to evaluate his condition. In my heart, I knew I could no longer do this alone. The time had come and I decided to tell him when he awoke.
A few hours later, after Sandy had rested, I sat beside him, held his hand, and said “You know I love you and am here for you, but I can’t do it without help any longer. If something like this happens again, you will have to go to the hospital that you hate so much. You may not be ready for Hospice, but I am.” Whether it was the sadness and determination he saw in my face or the fear of another hospital stay, he relented. “I know it is time to call them.”
Before he could change his mind, I went to the phone and placed the call. The Hospice doctor arrived the next day.