Our Hospice Experience

I was fixing dinner when the phone rang. A moment later my wife Marsha walked in the kitchen and said, “Dad’s been injured, I have to go to Fresno.”

At age 84 Homer Bell still worked every day. He tended a few elderly low-yield gas and oil wells in the desolate fields west of Fresno. Two days earlier he had slipped and fallen on a catwalk. He lay where he fell for two days and nights before his son found him. Homer was hallucinating and close to death when he was airlifted to the Fresno Trauma Center.

Growing up on a small farm during the depression, Homer learned the lesson of his generation—when you are in pain don’t complain. About the first thing he said when he regained consciousness was “I’m fine.” When Homer had recovered enough to be moved from the Trauma Center, he went by ambulance to the Kaiser hospital in Fresno.

His doctor said that in addition to a shattered hip, he was suffering from advanced prostate cancer. He must have been in constant pain before the accident. Once prostate cancer metastasizes to the bones it is incurable. He would need twenty-four hour care. His life expectancy was less than six months.

Everyone in the family agreed that the best place for Homer was with us. We had an empty bedroom, and because we had a large fenced yard, he could bring his beloved Brittany spaniel ‘Mitzi’ with him. Most importantly, though, a friend told me that our community has one of the best hospice organizations in the country, Hospice of Lake County. Before the accident I knew nothing about hospice. I had a general idea that they made it possible for people to die with dignity, at home with loved ones. I found the phone number of our local hospice organization on the Internet, and called them.

The woman who answered the phone said all they needed was a call from the hospital to start the process. She told me there was no cost to family or patient for their services. (I later learned that hospice care is covered by Medicare part A.)

The next day, a large blue truck from Apria Healthcare backed into our driveway. The driver and his helper wrestled a brand-new hospital bed into our guestroom.

That same day, Marsha and her sister Debbie drove Homer the 300 miles from Fresno to our house. Before they left, Homer’s doctor gave him strong pain medication. When they got here, a neighbor’s son—a Marine home on leave from Iraq—helped us move Homer from the car to the hospital bed.

The hospice social worker, Sharon Weeks, met with us the next day. She explained that hospice care is more than pain relief for the patient. It also provides psychological, spiritual, and physical care for family, patient, and caregivers. She gently led us through the paperwork of end-of-life care. After Homer gave his signed permission to accept hospice care, she asked him who he wanted to speak for him if he were incapacitated. He chose Marsha.

The hospice nurse, Wayne Myers RN, visited us later that afternoon. My most vivid memory of that discussion is when he said, “On a scale of 1 to 10 for pain—where 1 is the least pain you can feel, and 10 is the worst—my goal is zero.” After reviewing the paperwork and examining Homer, explained what would be required for home care. He talked about feeding, water intake, and pain management. He told us that he would work closely with the Kaiser doctor in nearby Santa Rosa who had agreed to take Homer as a patient. Nurse Myers would be “the doctor’s eyes and ears.” The doctor had prescribed morphine sulfate for pain, and before he left, nurse Myers gave us detailed instructions on when and how to administer the drug.

When everyone had gone, I walked into Homer’s room. He managed a smile, and first thing he said was, “Tony, thanks for letting me stay at your house.”

All I could think of to say was, “How are you feeling?” He laughed and gestured at the hospital bed. “Well, I’ve been better, but I’m feeling fine.”

For the next month, we followed a simple routine. Each morning, Marsha would begin the day by having coffee with her father. She would help him lift his cup to his lips and they would chat about things that happened during the previous day. While they talked, I would cook breakfast for the three of us. When breakfast was ready, I would take it in Homer’s room and we would visit as we ate. A neighbor lady came in to do daytime care giving at 7 AM, when Marsha and I left for work. Twice a week, nurse Myers visited. He would do a physical exam, change bandages, and check the pain medication. Through it all, Homer always had a kind word and a smile.

Dying is a progressive process of withdrawal.

Mentally, people begin to lose interest in the world and pull away from the people around them. They resolve life issues, and come to grips with the idea that this life is at an end.

Physically, their body begins to shut down. They gradually quit eating, and eventually quit drinking. Families who do not understand this process often get upset and try to force food and drink on the dying. Both nurse Myers and Sharon Weeks had explained the process to us, so we were prepared when Homer lost interest in eating and eventually in drinking.

Toward the end, Marsha’s sister Joyce came to visit, and help care for her father. I got up late the day Homer died. When I walked into the kitchen Joyce was sitting at the kitchen table. She said, “Would you give Dad his pain medication? I couldn’t manage it. You seem to have a knack.”

I walked into Homer’s room and recognized immediately that he was near death. His breathing was rapid and he was panting. What hospice calls ‘fish out of water’ breathing. I sat with him and held his hand. We made eye contact, and I nodded yes. Then I went in the kitchen told Joyce that these were the last minutes. She went in Homer’s room to sit with him, and I called hospice. Fortunately I managed to catch nurse Myers before he left for his daily rounds. He said, “If you have any thing to tell him, now is the time to do so. I’ll change my schedule and be there as soon as I can.”

When I went back in the room, Joyce was crying and holding Homer’s hand. I told her what the nurse said, and left the room to give her time with her father.

In a few moments Joyce walked out of the room and said, “He’s gone. He smiled, squeezed my hand, and then he was gone.”

Nurse Myers and home health aide Laura Alexander arrived a few minutes later. As Alexander looked on, Nurse Myers did an examination and confirmed that Homer had passed on. Nurse Myers must have called the funeral home because the hearse arrived shortly afterwards. Two young people came in with a gurney. They slipped the body into a white plastic bag, and lifted it onto the gurney. Then they draped the gurney with a dark green cover and rolled it out the front door. Joyce started calling people in the family to tell them their father was gone.

That was six months ago.

I’m told our hospice experience was a good one. Looking back I realize that once we called hospice, everything went smoothly—social services, medical care, bereavement counselor—everything. I learned that hospice isn’t just about the patient and pain relief. It’s also about the family and everything else connected with end-of-life. I think one of the reasons our experience was so good was because we called hospice early.

When should you call hospice?

Call before you think you need to.

© Tony Levelle, 2006.
Free for non-profit use as long as the article includes this attribution and copyright notice.