No one needs to die in pain. That is what the social worker told me as I signed the papers that would put my father on hospice care. That is the mantra of hospice, and it became my mantra as well. I had no choice but to believe it since my dad had suffered so much.
For weeks, each time I walked into Dad's room in the nursing home, he would 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 would 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 a nursing home, where he had resided since the brain surgery that was supposed 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 in his brain. We soon learned that, while the surgery was medically successful, the unexpected result was that Dad developed "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 is 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 that he can't be in pain."
"But look at him!" I'd plead, choking on tears.
"I know," she'd say. "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 discomfort? I wanted him under hospice care. The doctor maintained that he still wasn't ready.
One day, while I was working at my newspaper job, the phone rang. It was the head nurse from Dad's nursing home. She said, "Carol, we did it! He's going on hospice. Can the provider call you at work? If you can do the paperwork now, then 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 paperwork and met the hospice people at Dad's home after work.
Grief Counseling for Family Members
After we won the fight for hospice, my main concern became how to tell Mom. Hospice means approaching death to most people. And, of course, that is what they do: they help people die naturally, with as little pain as possible. However, to tell my mother that Dad was going on hospice would be difficult. 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 have heard it all before. They did not make me feel silly or foolish or cast judgement. They gently, but firmly, said no. They would tell Mom why they were there, and they would help her cope.
At this point, Dad had been at the nusring home for around a decade. The time is a blur, in some ways. Years into his stay, my mom joined him at the facility. She, too, suffered from dementia, although it was a slow growing, more "normal" kind (if one can describe dementia as normal). She was also prone to frequent falls, due in part to severe arthritis pain. She was frail, and only weighed about 85 pounds.
What would this do to her, knowing that Dad was dying? Mom and Dad had been in separate, private rooms on the same floor for years. We felt that during these last months, they should be together, especially since Mom didn't have the mental or physical strength to keep going to visit Dad in his room. So, after all those years, they became roommates again.
The hospice social worker told me that Mom had to be told about Dad and that their pastor would visit with her. They reassured me that they worked with these scenarios all the time. Mom would be sad, but she would be okay. However, I was still worried, especially since Mom's dementia kept her from remembering new information.
Pain Management At the End of Life
The change in Dad after he began receiving comfort care was amazing. My gratitude to hospice is unending. Dad was given a very small dose of morphine. His breathing was regular, and he was relaxed. He even smiled with recognition when I went to see him each morning. The hospice pastor and the social workers were excellent with Mom. Of course, the nursing staff and CNAs at at the nursing home, who knew them both so well, were part of the care team. They were, as always, exceptional.
It was so obvious to me that Dad was more content and physically comfortable, and when he slept, he slept well. I can't even remember how long Dad lived with hospice care. Being at the facility had been a normal part of our lives for so long that nothing much really changed except for Dad's level of comfort. He was comfortable for the first time in months. Mom noticed this as well and felt better. The whole family was somehwat relieved. Dad was as close to being himself as his demented mind would let him be.
Of course, his health continued to go downhill. We knew he was dying. Late one day, Sarita called me at work and told me that Dad was slipping. She said I should probably come over. I called my sister, Beth, and then went right over to the nursing home. Beth drove 40 miles into town and met me there.
We sat with Mom and then sat with Dad. We held his hands, touched him, talked to him, and traded places to keep supporting Mom. She couldn't bring herself to sit with him. She wasn't strong enough and she wasn't totally comprehending what was happening.
The nurse came in to turn Dad and wipe his skin off. He seemed to rally some (which, I now know, is not unusual before death). He seemed good for a while, so Beth left to drive back home and take care of her kids and dog. She had no more than gotten on the road when the nurse said quickly, "Carol!"
I slid next to him and held him as his body slipped into death. For the first time in a decade, I felt my real dad with me. His spirit was freed from his body. I was crying, both with grief and joy.
Hospice Care Is Provided At Home or At a Facility
One of the worst parts of Dad's death was that I had to tell Mom, each day, over and over, that he had died. She could not keep the concept in her mind. But grief counselors and the pastor were there to help Mom cope, and the rest of us could get any help we felt we needed.
Meanwhile, Mom's pain was increasing. We believed she had cancer that was spreading from her colon to her bones, but she was too weak to handle any tests or treatments, so comfort was our only goal. Her pain was far too severe to be just arthritis.
Once again, I talked with the nurses about hospice care, this time, for Mom. And this time it was easier. As soon as hospice put Mom on a bone cancer pain killer, she was pain free. This was the first time she had been without pain for decades. Gradually, they needed to add morphine. Five months after Dad's death, Mom died peacefully, with Beth and me cheering her on. Hospice brought Mom through, to a peaceful, pain-free death.
Many people think hospice workers only go into people's homes. They do go to homes; homes of all kinds. They can arrange for volunteers to sit with the sick person in his or her home. They can arrange for hospital equipment, if that helps with their comfort level. With my parents, hospice also helped them die at home. Their home just happened to be a skilled nursing facility.
When to Call Hospice
Many people think you need to wait until someone is at "death's door" before you call hospice. Nothing could be further from the truth. I have a friend whose 65-year-old father is dying from prostate cancer. He may live several more months and he isn't in pain. Still, he needs nursing care for tubes that take care of body waste. He is prone to infections. He needs to be gradually worked into more intensive care. He will eventually need pain management, and I have been encouraging her to call hospice if only to just talk with them. She is reluctant and afraid she will "jinx" him. What if he gets better?
Fantastic, I say! People have been known to go on and off hospice several times. That happened to the elderly mother of another of my friends. She went on hospice, improved and went off care, and then back on twice. These care providers are extremely accommodating. Eventually, she died peacefully under their care. It was worth it.
Take it from this daughter, who loved and cared for her parents through very long goodbyes. I speak to hospice groups with gratitude, thanking them for what they did for me and my parents. Remember: no one needs to die in pain.