A Hand in the Darkness Helping to Provide Hospice Care July 2006

Elizabeth Peek
Photos by Russell Byrne

The world changed for us when my husband, Bill Trumbull, was diagnosed with ALS (Amyotrophic Lateral Sclerosis), otherwise known as Lou Gherig’s Disease. This terrible disorder destroys the ability of the central nervous system to connect the brain to the muscles. The person’s body simply quits working as one piece after another — system following system – shuts down forever. The progress of ALS is a sad thing for anybody to have to endure and, I think, even sadder to observe.

I always thought ALS was a mean disease. My husband’s great gift was communication and the disease first attacked his throat.

I knew nothing about ALS when the diagnosis was made, but I’m a person who wants to know everything so I had become an expert on the topic long before Bill passed. There’s no cure for ALS; everybody dies in the end. It slays people with no respect to gender or age.

Coping with a death that we could see coming as clearly as if it were an approaching train demanded radical adjustments from both of us. At one point, early in the disease, Bill lamented to me, “I’m going to die, Liz!” He struck disappointment if he thought he was going to get any sympathy from me.

“Well, I’m going to live!” I shouted at him. “I’m going to have to stay here and carry on in your absence. You’re going to a better place while I’m going to have to stay here by myself!” He never said anything like that again.

Of course, my heart was broken by my husband’s sufferings, but we’re at our best when we’re thinking about others, and are at our worse when we’re feeling sorry for ourselves, so I think that through my pretended anger I gave that guy a gift that morning. (And it wasn’t all pretend. I wasn’t always at my best during those days.)

Finding Resources for Living in the Face of Death
Following the diagnosis, Bill and I spent some time traveling and having fun together. Nothing stopped us. As the disease followed its inevitable course, Bill became confined to his wheelchair and we bought a van. We were taking great pleasure from each other’s company and discovered that life had, somehow, grown even more enjoyable as the monster that was going to finally put an end to that life grew closer with every passing day. We lived as large as possible during the diminishing time that remained for us.

Golden Hills Church, where we were members, proved to be a source of strength in a number of ways during Bill’s illness. The church is so large with so many ministries that you might imagine a single person would get lost in the shuffle. But that certainly never happened with me. The women in our care group, for example, cooked for me three days a week. I would come home from work, take care of Bill, and suddenly a hot meal would be sitting on the table.

“How long are you going to continue this?” I asked them one time.

“Until the end,” they said. “However long it takes.”

One lady from the church, named Ronnie, realized how tired I was getting. “What can I do for you?” she asked.

I told her, “You can take my husband in the van Christmas shopping. Take him for a meal.” I showed her how to load him into the van and then the two of them set off and had a great time together. I had intended to collapse while they were gone, but instead got some important things done that I hadn’t had time for.

A month before Bill’s passing I arrived at church and for some reason hit an emotional wall. I found myself sitting in my car in the parking lot bawling uncontrollably. Suddenly Pastor Larry, himself, was there beside me praying. He was the voice of God speaking comfort to me, and God’s hand reaching out to me that morning.

It was a relief when my husband was finally approved for the service, but hospice proved to be an even greater relief than I had anticipated. The personnel were so kind! Hospice provides a team of people to work on meeting the needs of the suffering person. My husband got a nurse, a social worker, and a team of three home health aides. Other people, including a pharmacist, chaplain, dietitian, and medical director, were available in the background on an as-needed basis. Those aides were marvelous! They did things for Bill that nobody else would have done for him – clean him and hug him. On Sundays they would show up at our doors at 7:30 a.m. so they could help us get ready to go to church. They were wonderful! I can’t express how much they helped me.

There was also a team of volunteers who were like angels come down from heaven to help us suffering people. Volunteers are at the heart of hospice service.

I wanted to be present with my husband at the end. The journey had been long and difficult and I didn’t want to miss the transition. On his last day I got back from picking up some medicine. The nurse was sponging him. “He’s going to die today” she told me.

The progress to the door of death had been a tough one for my husband, but passing through to The Other Side turned out to be easy. As we stood around his bed, the end of Bill’s life came in an absolutely peaceful manner. He simply kept taking deep breaths until finally he took one that wasn’t followed by another. I’m grateful that I was there with him. I will never be afraid to die.

Bill left a letter behind for me to read after his passing. It contained the lovely words, “I never want anyone to believe that you were loved less than you were.”

Paying Back to Hospice
After Bill was gone I made some changes in my life. I joined the Board of Directors for ALS in San Francisco. They had lost their nurse so I decided to attend the support groups and help the caregivers. I began visiting people and helping them find answers to the question, “What do I do next?” I conducted a fundraiser and helped put together an ALS resource manual.

One day I was asked to be guest speaker for the hospice volunteers to talk about caregivers. The Volunteer Coordinator for the hospice we had used ourselves subsequently told me, “I’m quitting. You would be perfect for this job.” June 21, 2001 was my first day on the new job. I’m responsible to recruit and train volunteers for hospice care. From the beginning I fit right into the position. I once took a test at Golden Hills Church to determine my gifts and it turned out that they were Teaching and Organization. God’s partnering with me in this effort and every day I pray, “Bring me people.”

I currently have 65 volunteers who are donating time, material, and talents. I ask them for a one year commitment, but many of them stay far longer than that. When I began we had two volunteers in East Contra Costa County, and that number has now grown to a dozen.

I train new volunteers, meeting with them on Tuesday and Thursday evenings for four weeks. Some volunteers come to us wondering, “Why would I need training?” By the end, however, they are saying, “I never realized how much there was to learn.” I’ve got a content heavy curriculum. We go through a thick manual full of resources and case studies geared to real-world scenarios, and watch videos about care giving and bereavement. We do role plays. I tell a student, for example, “You are going to be the person who is dying. Talk about what’s most difficult for you.”

During some of the classes guest speakers address the students. For example, Dr. Linda Tucker from Sacramento State takes the class for one evening and spends three hours talking about communication. A chaplain is another of our guest speakers.

We look at the spiritual nature of death. We ask the question, “Why do people so often die in the middle of the night alone?” Then we talk about a possible answer, “Because the love of others is what has been holding them here.“

An Amazing Troupe of Helpers
My volunteers are amazing people. All of them have hearts overflowing with mercy and compassion. Sometimes people ask them, “Why would you want to do this?” They typically reply, “Why would I not want to? Staying by someone’s side during a difficult time is not a bad thing; it is a good thing.”

The volunteers donate up to four hours of their time a week for a patient until death. They provide respite to the caregivers so they can get the break that they so desperately need. The volunteers cook meals for their patients and do the laundry. They might make homemade soup that is perfectly suited to a patient’s needs and tastes – for example, no salt or garlic for troubled stomachs. They read with the patients, and pray with them. They sometimes sing to their charges. Some people deep in a coma or dementia will respond to a song when they won’t react to any other stimulus. They also conduct life-reviews. One recently sat with a caregiver and let her talk for three hours about her mother.

Just as they did with Bill and me, the volunteers add a different dimension to the families they serve. They are with the families the longest of any of the support team, and thus have an opportunity to establish beautiful relationships. I bow to them! They are great people!

We see miracles of love and hope all the time. Sometimes people in hospice actually recover. Whether the release comes through death or through the rare recovery of health, hospice provides people with a shoulder to help support burdens that often become too difficult for suffering people to bear alone.

I believe birth and death to be two parts of the same process. In both cases we are catapulted through pain into the light. Just as pre-natal health care can provide for an easier time in a delivery room, so proper hospice care can provide for an easier time in that other transition we all must eventually make. I’m pleased to be part of a system that is providing the help and solace to others that I received in my own hour of need.