My father had brain surgery on September 18, 2012 to remove a blood clot. In the first few days following surgery, he seemed better. We thought he was going to continue to get better and go home. He was eating, but not much. My mom, my sister, and I took turns feeding him. He couldn’t feed himself. Even before the brain surgery. The dementia had progressed. Utensils were difficult. Even getting the food into his mouth with his hands had become challenging. So now, post surgery, we fed him. His food was puréed. His liquids were thickened. Choking was a concern. We tasted the ICU puréed food. Other than the texture, it was good.
Some days, he ate the food in the ICU. Other days, he refused food. He said he wasn’t hungry. I’d continue to try to get him to take a few bites. “I don’t want any!” he’d say, clamping his mouth shut. My mother would tell me to feed him anyway. He’d get agitated, flailing his arms and threatening to hit me.
We brought ice cream. Vanilla and chocolate. My dad always loved ice cream. He let me feed him a few spoonfuls. My mother was determined that he would eat. She sent me to the store for more ice cream, chocolate pudding, and applesauce. She said he needed to get his strength back so he would get better. So he could go home.
After ten days in ICU, they discharged my father to a rehabilitation facility (i.e., skilled nursing facility). The doctors who discharged him led us to believe that my father was sent there to slowly recover and ultimately return home. He continued to decline. My mother stayed with him each day, returning home at night to rest. The house was too quiet, she said. His kitty was looking for him.
My parents’ 58th wedding anniversary was on October 2nd. My mom bought my dad a card and took it with her for her daily visit to the rehab facility. She read the card to him, but wasn’t certain he understood. His ability to communicate had diminished markedly since the early days after the surgery.
He ate less and less as the days passed. My mother became alarmed. She called me on a Thursday afternoon three weeks after the surgery and told me she was considering having a feeding tube put in. She said we’d talk about it when I arrived on Saturday. I’d read about feeding tubes and Alzheimer’s patients. They’re often inserted when hand-feeding is the only option. The nursing staff aren’t inclined to spend time hand feeding the residents. They’re understaffed. Surgically implant a tube, hang a bag, and on to the next.
I didn’t like the idea of putting my father through yet another surgery, potentially fraught with complications, including the possibility of restraints if he became agitated and tried to pull the tube out. My father had always been stalwart, fearless, in control. I knew he wouldn’t have wanted a feeding tube. He would have wanted the doctors, nurses, and aides to get their damn hands off him and leave him in peace to die on his own terms. I needed to find a way to stop this. Or at least buy some time.
I thought if I could just find some palatable puréed foods, maybe he would eat. The food at the rehab facility was vile. Much worse than the ICU. So I searched the Internet and found a company in California that makes gourmet puréed food, Blossom Foods. I called and placed an expedited order, making sure it would arrive within two days. (Despite assurances, the food would not arrive until the following Monday, two days after my father took his last bite of ice cream.) My mother agreed she would hold off on the feeding tube until we’d had a chance to see if he’d eat the food I’d ordered. She was insistent that my father needed to eat to get his strength back so he could get better.
No one had told us my father was refusing to eat because he was dying.
Two weeks after my father entered the rehab facility, the doctor broke the news to my mother. My father was very sick. He was not going to get better. I called the doctor and asked about my father’s condition. I took notes on a legal pad. The notes are still in that pad, in between pages of work notes: “Very sick. Won’t rehabilitate. Won’t get better. Kidneys failing.” I can’t bear to tear that sheet off and throw it in the trash. I don’t know why.
I asked the doctor if a feeding tube made sense, given my father’s death was imminent. She said it was a very personal decision that the family would have to make. She sensed I was against the tube and was looking for something to make my case with my family. She said if it was her father, she would not have the tube put in. It would only prolong the inevitable.
I asked the doctor if I waited until morning to come, would I get there in time.
“I think so,” she answered.
“Is it time for Hospice?,” I asked.
“Yes,” she said.
In the morning I threw some clothes and toiletries into a bag and drove to Houston. When I got to the rehabilitation facility, we had a family meeting about the feeding tube. My mother, my sister, and my brother still were in favor of the tube so my dad could get stronger. There was no way he could get better if he wouldn’t eat. None of them were ready to agree to Hospice. Hospice meant all hope was lost. My mother still had hope, despite what the doctor had told her. She wanted more time with her husband of 58 years. The man she married when she was just 18. I was outnumbered and felt I had to go along to give my mother peace of mind. Even though I also felt I was betraying my father. But still my mother agreed to try the food I’d ordered before authorizing the trip to the ER to have the tube surgically inserted.
The doctor called again shortly after we left the rehab facility that night, all of us emotionally exhausted. She delivered her message more forcefully, hoping my mother would hear her.
My dad didn’t have much time. Days.
My mother sat in her chair and sobbed.
“I don’t want to lose him! I love him so much. I don’t want to live without him. I can’t!”
I held her as the sobs wracked her body. My sister tried to stop her crying. She insisted my mother was strong and could live without my father. Ignoring my sister, I held my mother, and I cried with her.
We agreed we would call Hospice in the morning. But my mother was still intent on the feeding tube. She wanted more time with my dad, even if he was dying.
Later that day, two weeks after my father entered the rehabilitation facility, we met with the Hospice volunteer. She explained how Hospice worked and that my father probably would qualify for in-patient care. My mother brought up the feeding tube. She wanted to have it done before he was moved to Hospice. (It could not be done once my father was in hospice because it was not palliative care.) The Hospice worker explained to my mother that the tube might give him a few more days; but because his body was shutting down, he couldn’t digest what he was eating, which would make him more uncomfortable. Aspiration pneumonia was also a concern. And then there was the question of what my father would have wanted. My mother sat quietly for several minutes. Her shoulders sagged.
“He wouldn’t have wanted a feeding tube.”
My mother did what my father would have wanted. My father entered in-patient Hospice without the tube.
In the days that followed, my mother asked me several times if she had done the right thing. I assured her that she had. I knew that she had.
“But he has to eat!” she’d say. And the Hospice doctor would explain to her again that he did not need to eat. And that eating would hurt him if we forced him.
It is hard to accept that feeding someone is not always a loving act.
On the Sunday after my father died, I was at my mother’s house with my niece, going through insurance papers and looking for my parents’ wills. I found them in a file cabinet in a spare room upstairs. Both my parents’ wills were in a large envelope bearing their lawyer’s letterhead. I thumbed through the papers, and stopped. There was a single sheet not bundled with the rest. I pulled it out. It was my father’s medical directive, signed 13 years earlier.
My father had declined all life-sustaining measures, including artificial feeding and hydration, should his death become imminent.
I rushed downstairs and told my niece and mother to come quickly, I had something to show them. We sat down at the kitchen table.
“Oh, you found the wills,” my mom said.
“Yes, and I found something else.”
I held her hand and read the directive to her.
“You knew you did the right thing, Mom. You knew what Dad would have wanted. But now you never have to doubt you made the right decision.”
The three of us, my niece, my mother, and I, cried at the kitchen table, the directive lying in front of us. This time, they were tears of solace.