Hospice helps each patient make the most of every day
FINAL OF A THREE-PART SERIES
By JUDITH DULBERGER
My second visit with June was more emotional than the first. We talked awhile about her deteriorating health.
She was developing thrush in her gums, mouth and throat. Thrush is a fungal disease that typically develops with cancers such as lymphoma and leukemia.
I asked if she was afraid. She said yes and started to cry.
We then talked together about her spiritual journey. "I don't remember praying much throughout my life," June said.
When she learned of her illness, June started to pray. She prayed that she would get better or that the treatments would work.
"I always believed in God," she said. But she was never brought up to pray or go to church that much. "When I got older, I could have gone to church, but I didn't. I feel guilty about that."
Her real spiritual journey seems to have started with the Rev. Vicki Yoder, whom many call "Reverend Vicki."
She told the Rev. Ms. Yoder: "I don't know how to die. I don't know how to do this." So, Ms. Yoder tried to teach her how.
Ms. Yoder serves Hospice of the Valley patients mostly in southern Mahoning County and Columbiana County. She rides around in the latest-model Volks-wagen with a license plate that says "Vics Bug."
She is soft-spoken and dresses conservatively, more like a business professional than a chaplain. But she often cries when recalling experiences she has had with dying patients and their families.
A Mennonite by background, Ms. Yoder said she works with patients of all denominations. "Normally, denomination doesn't matter. It's hardly mentioned." It's not religion but spiritual care that hospice chaplains provide.
Ms. Yoder has become familiar with the various faith traditions so she can give respect to each one. She is even co-authoring a book through Akron General Hospital, "Faith Traditions in Healthcare."
The book provides not only pastoral workers but health-care workers with an understanding of the various faiths and what is meaningful to the patient within that faith at the time of death.
Finding the story
Ms. Yoder has been with the local hospice a little over two years. She said, "I look at dying as part of the process of living. People who are dying have the right to die with dignity. It's a passion for me. I feel very blessed being able to go out and walk with people on their journey of death.
"Death is a new experience for us, a new adventure, a place we haven't traveled."
One of her favorite sayings is "Behind every tear is a story." That is how Ms. Yoder approaches each patient. She tries to meet her patients where they are and is an active listener. Tell me the story behind your tears, she says.
My third visit with June took place with Ms. Yoder. I sat and listened to their conversation for more than an hour and was allowed to pray with them briefly before we left.
Ms. Yoder called June "dear friend." June journeyed from a sense of horror to a place of peace and acceptance with Ms. Yoder's help. The two would meet every week or more often as necessary.
June told me that her relationship with God had definitely changed. "I was not a very spiritual person. Vicki is teaching me how to become more spiritual. Vicki talks of death as a process, as part of God's overall plan for our lives. Vicki keeps telling me this is a new beginning for me.
"That's the way you have to look at it. One journey into another journey. It makes it much easier to think about it that way.
"It's your body that dies, not your soul."
During this visit, June looked well, although the previous week she had had a scare with bleeding and ran to the emergency room in a bit of a panic, not even thinking to call hospice first. She admitted that the blood and platelet transfusions were keeping her alive.
Ms. Yoder and June talked about this episode with little awareness that I was looking on and listening. It was a very intimate moment between the two friends. They spoke of the decision that would need to be made at some point to suspend treatment.
Ms. Yoder asked, "Have you thought about when that time comes, will you be able to make a decision [about] going for transfusions?"
"I do think about it," June said. "I know I will have to make a decision one of these days, as I get weaker and weaker. ... I think I will know when that time comes. "
Ms. Yoder reminded June that she did have a certain amount of control over her own dying process.
"You may not be able to do anything about your physical condition," she told June, "but you still have the power to make the choices and decisions you are going to be asked to make and that's an awful lot of power."
Ms. Yoder made it clear that when June reached that point, she would support June in whatever decision she would make. When they finished talking, a palpable sense of calm descended on the room.
What would she miss most? Watching her grandchildren grow up, June said.
"And any regrets?" I asked. June said she had always been a quiet person. If she hadn't been so quiet, she might have been more demonstrative with expression of love to her children. She was grateful for the opportunity to express that love the last several months of her life.
But June had more to share with her children. So she also spent part of her days making a photo album of herself for her children and grandchildren.
And she wrote letters to each of them: things she hadn't been able to say to them directly -- how proud she is of each of them. In a way, it was her legacy to her children.
Rabbi Simeon Kolko of Ohev Tzedek Congregation in Boardman helps people with the idea that each of us has the ability to leave a legacy. He referred to the recent movement around the concept of the "ethical will."
"It shouldn't just be up to other people to determine, after the fact, what they think our legacy was," he said.
"Hopefully, we can at least convey what we hoped our legacy was by sharing in letters and statements what spiritually and ethically made us tick and what were the values that we tried to live our lives according to."
Rabbi Kolko emphasized that this sort of legacy is empowering to people. "It helps them understand that there can be pieces of them remembered. Not only remembered in the abstract, but remembered in ways that affect how people live."
The stages of hope
Hope was a theme in all of my discussions with June. She shared one of those hopes with me. June wanted to have the chance to see her son work a huge piece of construction equipment. He works for a company that lays pipe.
When she was first going to visit the work site, there was a snow delay. But she did have the chance again, and when it finally happened, it was special for both June and her son.
Though many health-care professionals talk about the stages of dying -- shock, denial, fear, anger, acceptance -- the Rev. Jay Eastman, hospice chaplain, talks about the stages of hope in the dying process.
First there is the hope for a cure. Then the hope that you'll live another two years or the hope that you'll live until your granddaughter's wedding or the hope that you'll live until the next holiday. And finally, the hope that you will die with dignity.
These had all been June's hopes.
June said that when she woke up every day, she felt a sense of gratitude. If she didn't feel well, she would take her medicine, begin to feel a little better and then experience a sense of joy and peacefulness that the day would be good.
June was grateful for her family and friends, for the place of hospice in the final stages of her life. And June made a point of expressing her gratitude for the thousands of blood donors who made it possible both to extend her life and the quality of her life.
How would June like to be remembered? She said she would like to be remembered for the strength that she had been able to exhibit during the very difficult time of her illness.
June's experience is a lesson to all those who will take this same journey.
Dr. David Kuhl has learned that only people with a terminal illness know what it's like to live with such an illness.
In his book, "What Dying People Want," he says the dying "are our best teachers."
And, he continues, "as much as the diagnosis of a terminal illness marks the end, it also serves as a beginning -- an opportunity to ask what the time remaining in your life means to you."
People generally die as they have lived, and so it's best to live as if "every day is a gift." That, in fact, is the motto of Hospice of the Valley.
Art Einzig, an architect who lives in Liberty, lost his mother, Lil, to mesothelioma, a rare and untreatable lung disease caused by asbestos exposure. The disease usually runs its course in nine months or so.
Lil lived and was able to function, though with decreasing energy, for nearly five years after the diagnosis.
Recalling his mother's final years, Einzig said, "the last few years or the last few months are not as important as the dedicated relationships you nurture over a lifetime."
"It's too late," he reflected, "when you're in the last few months. That's like the closing chapter. You can't write the book if you're in the last chapter. The book is already written."