No one needs to die in pain. That’s what the hospice social worker told me, as I signed the papers that would put my dad on hospice care. No one needs to die in pain. That’s the mantra of hospice, and it became my mantra, as well. I had to believe it, as my dad had suffered so much.

For weeks, each time I walked into Dad’s room in the nursing home, he’d be rigid in bed, up on one elbow and slamming his fist against his hand. Pow! Pow! Pow! Over and over, he pounded fist against hand. I’d try to get him to relax; to lie back. He couldn’t comprehend. Pow! Pow! Pow! He was trying to knock out the pain.

Dad was in Rosewood, where he’d lived since the brain surgery that was to correct the results of a World War II brain injury, compounded by age, failed. Dad went into surgery foggy, from fluid building up behind scar tissue. We soon learned that, while the surgery was medically successful – the shunt that was inserted into his brain to drain the fluid worked – Dad suffered from what I call “instant dementia.”  He needed complete nursing home care.
 
Each time I saw him in such an agitated state, I would hurry from his room, back out into the hall to talk with the nurse. Had the doctor been in yet? Had he seen Dad like this? Would he please help us get Dad on hospice?
 
“Dad’s in pain, Sarita. It’s obvious. Can’t the doctor give him something?” I’d say.
 
“I know,” she’d answer. “He’s in pain. We know him and can see it. The doctor looks at the records and says he sleeps so much, he can’t be in pain.”
 
“But look at him!” I’d plead, choking on tears. 
“I know,” she said. “I know. We’re working on it.”
 
We knew Dad was wearing down. He didn’t have long to live. But did he have to be in such pain? I wanted him under hospice care. The doctor said he wasn’t ready.
 
One day, while I was working at my newspaper job, the phone rang. It was the head nurse from Rosewood. She said, “Carol, we did it! He’s going on hospice. Can hospice call you at work? If you can do the paperwork now, we’ll get him started.”

A hospice social worker called me at work, and even came up to my office for the initial interview. I did the paper work, and met the hospice people, after work, at Rosewood.

My main concern was how to tell Mom. Hospice means approaching death to most people. And, of course, that’s what they do. They help people die naturally, but without pain. However, to tell my mother that Dad was going on hospice would be hard. I even asked the social worker if we could “skip that part!” I can’t believe I asked that, but I wanted to spare my mother the emotional pain of knowing that dad was dying. I meant well, but I think I was trying to spare myself more emotional pain, as well.

One of the great things about hospice is that they’ve heard it all before. They didn’t make me feel silly or foolish. They gently, but firmly, said no. They would tell Mom why they were there, and they would help her cope.

Dad had been at Rosewood for around a decade – maybe more. The time is a blur, in some ways. Years into his stay, my mom joined him. She, too, suffered from dementia, though it was a slow growing, more “normal” kind (if one can describe dementia as normal). She also fell frequently, as her arthritis was severe. She was frail, and only about 85 pounds.