Death is a part of living

Death is a part of life.

That’s a fact most  people forget until they are faced with a terminal illness or death of a loved one.

The nurses, volunteers and other workers at Bothwell Regional Health Center’s Home Health and Hospice are reminded of this certainty nearly daily. They are there in the final months, weeks and hours, and have helped more than 2,000 people die at home peacefully since its inception in 1992.

The goal of hospice is to help people with a life expectancy of less than six months, who have ceased treatment of their illness, to die “pain free and to pass this world with dignity,” said Barb White, hospice patient care coordinator.

The program — which is for terminally ill patients of all kinds including those with cancer, Alzheimer’s or life-limiting heart and lung conditions — takes a holistic approach. Hospice provides physical, psychological, social and spiritual care for patients and their families, including bereavement counseling for a year after the patients’ death.

“It’s very challenging, to say the least, when families decide to bring their loved ones home. We can do a lot of things to help,” White said. “Hospice is there for the purpose of supporting that decision and allowing the patient to remain in their home as long as they can. ... Everyone deserves that end-of-life care.”

The hospice team includes four nurses (and eight other home health care nurses trained in hospice care), a chaplain, grief counselor, medical social workers, dietitians, home health aides and about a dozen trained volunteers.

The Bremers

“You better pet your dog, Nancy; you’re the reason she’s spoiled,” Jimmie Bremer, 81, said to hospice nurse Nancy Shay on a recent visit as the Bremers’ dog, Miss Daisy, vied for attention.

Daisy rolled over for a belly rub, and Shay obliged.

“Hospice care at its finest,” she said.

Jimmie affectionately calls Daisy a “slobbering bulldog,” the same name Shay jokingly calls Jimmie.

Conversation about Shay’s weekend and the Bremers’ family and recent activities are mixed in with talk of medications, Jimmie’s restlessness at night and loss of appetite. Shay had an idea on how to regain Jimmie’s appetite.

“Make him some peanut clusters,” she said to wife, Skip.

Shay checked his blood pressure, discussed his oxygen levels and gave him a flu shot, while Skip talked about the birthday spa gift certificate Shay gave her.

“I felt like a new, old woman,” Skip joked.
“You got to pamper yourself once in a while when you work so hard,” Shay said.

This is similar to most of Shay’s twice-a-week visits to the Bremer home. If Shay can’t make it, another hospice nurse will visit, but the nurses try to consistently see the same patients.

“I spend a lot of my time visiting; I find out a lot more visiting,” Shay said.

The Bremer family is well aware of the services hospice provides. Jimmie has been on hospice for a year and a half.

“I don’t care what ya need, they’re there, and you’ve got it,” said Bremer’s wife, Skip, 77.

She recalls a time when Jimmie, who has lung cancer, was sick and hospice workers searched for the medicine he needed and met a family member to pass along the prescription. Nurses also help manage medications, provide an oxygen system and make suggestions to make patients more comfortable.

Jimmie was diagnosed three or four years ago after he battled what he thought was bronchitis all winter. Doctors found a spot on his lung, although Jimmie had quit smoking 30 years before. He underwent chemotherapy until doctors recommended stopping the treatment.

They expected Jimmie would have three to four months to live.

“But we’ve already beat the odds,” Skip said.

The family didn’t know much about hospice before, but is well aware of its benefits today.

“They’ve been good to us,” Jimmie said. “I didn’t figure it would be this long. ... If it hadn’t been for them, I wouldn’t be here now.”

Shay, who Jimmie described as a “honey” after her visit, is treated like family in the Bremers’ home.

Shay has been a hospice nurse for two years, a switch she made after feeling burned out as a surgical nurse. She disliked the home health rotation she did in school, but says that was probably because she lacked the confidence needed to do the job.

“I love it; it’s my calling,” Shay said of hospice nursing. “... You’ve really got to be able to step in a situation and make decisions. I don’t think four years ago I could have done that.”

A registered nurse of nine years, Shay said she is questioned about why she would choose the hospice specialty. She said she’d be wealthy if she had a nickel every time someone asked how she works with patients whose death is a certainty.

“Loss is loss. Grief is grief. I always feel loss and grief,” she said. “We’re human. But, having said that, death is a part of life. We’re all going to do it. If I can do anything to make that transition better, less painful, happier, then I’ve done a good thing.”

Shay said she has her “down times,” but she thinks about the alternative without hospice.

“That’s more depressing, because I know what we can do,” she said.

A learning experience
Hospice has a dozen volunteers, people who offer support to patients and their families in the time of need. They enter the door as strangers, and leave as dear friends.

Patsy Hartung, 70, of Sedalia, has been a hospice volunteer for seven years.

“When I retired, I knew I wanted to volunteer at something, and that’s the first thing I saw in the paper,” said Hartung, a former Head Start teacher and office manager.

She considers herself “lucky enough” to have seen the newspaper advertisement seeking volunteers.

“Once you get into it, you really see the need for it. ... We really get more out of it than we give,” Hartung said.

Some may think the work would be depressing. Hartung said that is a misconception.

“It is amazing how upbeat and carefree the hospice patients are, as long as they’re aware of their surroundings,” she said.
The majority of patients are even “perky,” Hartung said.

“They have exhausted all other ways of getting well,” she said. “Once you go on hospice, you know the end is near. They accept it, and enjoy every single day they’ve got.”

Many of the patients enjoy visiting with volunteers. They like to talk about their past and regrets. It is difficult to form these relationships that are destined to be short-term, Hartung said.

“That’s hard,” she said. “It’s very hard because you not only get acquatinted with them, but the family too. You do always keep in the back of your mind you know it’s going to be short term.”

No matter how much she prepares, “it’s always hard” when a new friend dies.

“It’s like a family member; you think you’re prepared, but you’re not,” Hartung said.

Volunteers typically visit once a week for two to four hours, but it can be more or less, depending on the needs of the caregiver. The purpose of the volunteers is to provide relief for the full-time caregiver, so that he or she can go to the store, run errands, keep a weekly hair appointment or just get out of the house.

Hartung reads newspapers, books and the Bible; watches television; holds the patient’s hand; and even sings on occasion.

“It takes about two visits to find out where they are coming from, what they are going to enjoy, what they aren’t,” she said.

Hartung recalls one patient who liked making the bed and another who took great pleasure in eating ice cream cones. She has been known to take patients treats, such as cupcakes, breads and homemade applesauce.

“I have all the time in the world, so I enjoy it,” she said.

Every patient is remembered, Hartung said. She takes special note of her very first hospice patient each year during a memorial ceremony, and lights a candle for him. He was her youngest patient, had no family and lived in a nursing home. He was unable to speak, but during the visits over six months Hartung learned to communicate with him. She remembers decorating a Christmas tree together.

“It was probably one of the hardest, but probably one of the most rewarding ones I’ve had,” Hartung said. “... He taught me a lot about being a hospice volunteer, and didn’t even realize it.”

Hospice volunteers go through an intensive training about grief and caring for people who are dying. Hartung said an outgoing personality, patience and tolerance are good traits for volunteers. Some people may think being a hospice volunteer gruesome, frightening or sickening, but “it’s not nearly as bad as I know they think it is,” Hartung said.

“I know there’s a lot of things out there I could do, but for some reason, this is just my niche. ... I don’t think I could have found anything better for me,” Hartung said.

Hospice has taught Hartung to enjoy the small things in life (gardening, reading a book, singing) and taken the fear out of death. She also reflects more on her own past. Recently, Hartung reconnected with a childhood friend.

“I know that all came about from hospice,” she said. “I think you really appreciate the past, and really appreciate family more.”

Her hospice patients also have her looking at her own regrets, like being grouchy at certain times.

“I’d say it teaches you quite a bit,” she said.

A lasting impression

Long after Walter “Guff” Gordon, 78, died July 25, 2008, his family remains thankful to hospice workers.

“I can’t praise them enough,” said Tami Henderson, Gordon’s daughter, who helped her mother, Jacie, care for Guff.

On Sept. 21, 2007, Guff awoke with severe pain, and tests from a doctor’s visit later that day showed he had a tumor in his colon and lesions on his liver. Guff underwent surgery to have a softball-size tumor removed from his colon and had six cycles of oral medication to treat his cancer. But the cancer had spread to other areas, and Guff was too weak for other aggressive treatments.

After the last doctor’s visit, “he knew it was pretty well over,” said Jacie, 73.

The doctors suggested hospice. Henderson said she had a misconception that hospice was a service for people who were in their final hours of life.

“We had no idea what hospice was like,” Henderson said.

A hospice worker visited the family to explain the program. Henderson said she found out the focus was on “quality of life, not quantity of life.” Guff was interested in being kept comfortable and free of pain.

The hospice nurse was able to identify Guff’s needs. Henderson said she knew that hospice could provide a hospital bed, but “we didn’t know what point to bring it out.” The nurse suggested a hospital bed as Guff was spending more time in his bedroom. The family agreed, and hours later it was delivered to the home.

Aside from the services, it is the personal touch that meant a lot to the Gordon family.

A yellow rubber duck that nurse Melissa Messerli snagged from a 50th birthday she attended and gave to Guff still sits atop Jacie’s television. Jacie said Messerli and Guff had a good relationship.

“She got to know if Guff was having a good day or a bad day,” Jacie said.

The Gordons also took advantage of the 24-hour care provided by hospice, including once on a Saturday when Guff’s ankles became swollen. Hospice also provided a wheelchair and occupational and physical therapy visits to the home.

Hospice also provided literature that was “very, very helpful” in understanding the process of dying, Anderson said. The family knew what to expect in the weeks, days and hours before Guff’s death. In the final days, restlessness sets in, breathing patterns change, eyes will be semi-open and hands turn purple.

Knowing what was happening, or going to happen, prepared the family and kept them from being scared when the symptoms occurred.
“We’re so thankful for hospice,” Jacie said.

In the last 24 hours, Guff was unable to talk to his family. But, they could “sit beside him, held his hand, and let him know we were here,” Jacie said.

When Guff died, a nurse called the funeral home and asked the family to step outside. After Guff was taken away, she made the bed and placed a long-stem rose on the pillow, “just so it wouldn’t be an empty bed,” Jacie said.

It is a moment that still stirs emotions for the mother and daughter.