Hospice Care
Home surroundings, family and friends aid patient in his journey

Story and photos by Carole A. Judge
For Health Care Today

Editor's note: This is the third installment in a series about R.J. and Ada Neace. They have given Health Care Today writer Carole Judge permission to share their experience as R.J. receives care through Hospice of Dayton for complications from COPD. The following is compiled from weekly visits throughout March and April.

Ada Neace sits on the front porch and waits. It's been more than three months since her husband, R.J., entered home care through Hospice of Dayton and he needs time alone to talk with Sue Crowe, RN, his hospice nurse. Ada speculates about what he wants to ask Crowe, but she isn't really certain. Regardless, she respects his wishes and understands his need for privacy.

After 10 or 15 minutes, Ada returns to the living room where her husband's hospital bed is set up. The room has also become her bedroom, as she's become accustomed to sleeping on the couch across from him. Her actual bedroom is too far away for this wife who wants to be close by her husband's side — a promise she made "until death do us part."

On this particular visit to the Neaces' home, R.J is concerned about pain he's having in his upper back. Breathing has been difficult for a long time now, but the shortness of breath is increasing, especially in the evening. "Does it scare you, R.J.?" Crowe asks. He nods yes. "We talked about this before. Remember how your lungs and heart are working so hard to make you breathe. It can cause pain. Do you use your nitro?"

With his oxygen levels dipping down into the 80s, and an increase in swelling, Crowe discusses with the couple, then his doctor, about changing some medications.

Crowe also updates her records, even checking things around the house, such as smoke detectors. "I have to make sure they are following oxygen safety," Crowe said.

	Sue Crowe, RN, a nurse with Hospice of Dayton, conducts her monthly checkup of patient R.J. Neace.

On St. Patrick's Day, R.J. chides Ada about the green sweater she's wearing. "When today's over, you can just throw one that away," he teases. "I like it," Ada shoots back, while Crowe laughs at R.J.'s demeanor. "He's an ornery one," she jokes, adding that she'll worry when he stops being "so ornery."

"Could you get a picture of me and Ada?" asks R.J. "Sure," I say, "But she's going to be wearing that green sweater in the photo." R.J. removes his oxygen tubing briefly and Ada sits on the edge of the chair with her arm around him. Even R.J. can't disagree that Ada looks particularly nice in the digital photograph where his full head of silver hair is highlighted against that same green sweater. "See it looks pretty good," Ada says, deciding to hold on to that sweater, despite what R.J. thinks of it.

R.J.'s mental gears are always engaged, but his shortness of breath can limit participation in conversation. A pause is sometimes necessary to give him time to gather the strength to talk. He speaks in short sentences, but each word is carefully planned, and he says a lot. It's also clear how disappointed R.J. is that he's not a candidate for a lung transplant, having been evaluated at hospitals outside of Dayton.

"They said that if they put me to sleep, they wouldn't be able to wake me up," he said.

"Maybe if he was younger it would make a difference, but they said they couldn't do it because both lungs are bad," says Ada, who then remembers what she wants to tell Crowe. "Since we increased the prednisone, he's not been sleeping good at night. He talks and shouts out in his sleep, likes he's speaking in another language or something. Sometimes it sounds like he's smothering."

Crowe gives a brief anatomy lesson to explain about the alveoli.

"Remember when I told you about those grape-like things in your lungs? They inflate and deflate and move the air. In comparison, R.J.'s are staying flat now."

"So what happens to that lung? Does it just stop working?" R.J. asks. When Crowe replies, explaining that both lungs, not just one, are affected, he sarcastically adds, "Boy, when I do something, I do it right."

"Maybe I could get a stronger sleeping pill," R.J. suggests. "I don't need no Viagra, or anything like that. Just up the voltage on that sleeping pill." Amused, Crowe agrees to call the doctor's office to increase the dosage. "Don't worry, we have plenty more things we can do to keep you comfortable," she reassures.

During her spring break, the Neaces' granddaughter Taylor visits, keeping her grandfather company. And, yes, he tries to get her to find a better ring tone on his cell phone, too. It's become R.J.'s common request of visitors, as he hates every ring tone on his new phone. "I just want two short rings like this," maintains R.J., imitating the sound he liked on his old phone.

"We just love her to death," says Ada about Taylor. "Darrell, her dad, said she called him and told him what a good time she had with us. She told me she doesn't want Grandpa to get worse."

Taylor believes her Grandpa feels better when she's there. She's probably right. And, although the fourth-grader says her favorite subject is reading, maybe science and nursing are in her future.

"She sat and watched me carefully," says Crowe about an earlier visit. "When I was in the kitchen, she was with me. Then, when I went into the living room to see R.J., she followed me right in there and sat on the couch and watched everything I did to him."

On the first warm day of April, Crowe arrives to discover that R.J.'s nose has been bleeding for more than three hours. Not wanting to bother the busy nurse, Ada didn't want to call in the morning, knowing she'd be there early that afternoon.

After several attempts at stopping the bleeding, Crowe confirms, "If you don't quit bleeding, I'm going to have to do something. When you're bleeding that long, we have to watch your blood pressure and heart rate."

Even though he's spitting up blood, R.J. swears he'll be fine.

"It'll stop; just go in the kitchen and get something to eat. I'll put a clothespin on it if nothing else," says R.J. He has been insisting that Crowe, who has become like one of the family, enjoy some of Ada's cooking. In between taking care of R.J.'s persistent nose bleed, Ada manages to make a lunch of sausage, biscuits and gravy.

"I'm not going to leave you bleeding to go eat," quips Crowe right back at him. After several more attempts to stop the bleeding, Crowe becomes concerned and moves into crisis-care mode. Calling for 24 nursing care to come to the Neaces' home that evening, she explains how LPNs would come and stay with R.J. in 12-hour shifts.

The two women continue to work as a team until the bleeding finally subsides. Resting with his head tipped back on his lift chair, R.J., his nose still a bit frozen, smiles and says, "See, I stopped bleeding so you could eat."

"Now you call and cancel them nurses," R.J. demands with every ounce of his energy. Then, with a shallow breath, he whispers, "I'm more satisfied with Ada here. Call off the dogs!" Crowe obliges.