Blessed Relief from Pain
Pain can’t be seen, touched or experienced by the observer, yet it can be crushing and debilitating to the one who suffers from it. Part of the mission of hospice is to alleviate pain. Cherie, an LPN with AseraCare, recalls how hospice helped Jimmy, a 28-year-old man with cystic fibrosis. “He had been managing his disease in secret for five years,” she says. “He thought there would be no release from the pain.” When Jimmy entered hospice, his symptoms of cough and intractable secretions from the cystic fibrosis were not responding well to treatment, and he suffered terribly from sleep deprivation and air hunger from his severe coughing spells. “We were able to sedate him enough to control his coughing and manage his pain, and he was able to relax and rest,” says Cherie. “We provided nursing support and physician home visits and emotional support to his mother. Most important, we gave him the confidence that he could die at home with his loved ones with the best palliative care and least obtrusive medical care that we could offer.” Cherie says that on the day he passed away, Jimmy motioned to her that he wanted to sit up. “He pulled me closer and hugged me,” she recalls. “I think it was his way of thanking me and letting go.”
Tender loving care is the specialty of the hospice home health aide or certified nursing assistant (CNA), whether in the home or in a nursing facility. The aide takes care of the patient’s personal care — bathing, hair washing, assistance in feeding, help getting to the chair or walking a short distance. Aides sometimes give back rubs and lotion rubs. They file and polish nails, and generally take care of the little things. Such niceties — the “buff and polish” — can make even the sickest patient feel better. Depending upon need, aides might fix a meal, do laundry, provide light housekeeping, or simply sit and read or just chat.
Doris Fry, a CNA for AseraCare in Green Bay, Wis., recalls visiting Betty, who had Amyotrophic Lateral Sclerosis (ALS) and couldn’t speak. “She communicated on her computer,” says Doris. “She loved it when I would give her a massage. We got to be very close. Every time I would come in, she would smile or put a note on the computer about how happy she was that I was there. It was a unique friendship.”
Providing such intimate personal care seems to be a calling for hospice home health aides and CNAs. They feel particularly attached to their jobs. “I feel that this is what I am supposed to be doing,” says Doris. “I get such a feeling of gratification. Hospice is so wonderful — and I think people actually live longer because they have hospice.” Her sentiments are echoed by home health aide Ashley Crowder at AseraCare in Richmond, Ind. “I love my job,” she says. And Ashley’s patients love her too. “I treat them as if they were my own grandparent or mother or father. If it brings a smile to their face, that’s all I need to know. It makes my day 100 percent better to know I actually made someone feel happy.”
She grew particularly fond of Rita, a woman in her 50s who had cancer and other problems. Rita was in a nursing home and didn’t really like anyone around her. When the family is absent, the bond between a patient and hospice aide can fill that empty space with real comfort and warmth. Ashley tells about how she and Rita bonded.
“I sat down and talked with her. So many times in a nursing home setting, nurses and aides don’t have time for a good conversation with patients. So I take the time to sit and chat and form a bond. Rita and I bonded so well that she wouldn’t let anyone touch her besides me.
“Every day I brought her a jug of tea, because she didn’t like water or juice. She loved strawberry ice cream, so I bought a whole bunch of individual cartons and we’d sit and have ice cream and tea together. She loved it because her family wasn’t around to spend time with her. When I was there, I was her family. I came to think of Rita as a second mom.
“She loved my children, aged 5 and 2. I’d bring them in every other week or so, and we’d sit and have ice cream. She loved talking to the children. My 5-year old was just starting kindergarten, and Rita gave me all sorts of tips to get him prepared for school.
“I couldn’t ask for a better job,” says Ashley. “Knowing that my face might be the last face they see, mine the last voice they hear, or my touch the last they feel, I have to make it as comfortable and as nice as I can for them. Many times I’m holding a patient’s hand when they take their last breath.”
Aides often go above and beyond the call of duty to assist a patient. Suzanne Helms, an RN for AseraCare in Decatur, Ala., tells this story.
“Alvin, an elderly patient, had but one companion in his home — his beloved little pug named Buddy. Alvin’s son and daughter-in-law lived close by and were there for him for emergencies, but Buddy was there all the time and provided emotional support and friendship day in and day out.
“During the first weeks of hospice care, Alvin would tell the home health aides that he used to bathe Buddy every week and how much Buddy disliked those weekly baths. He even shared with the aides that he might have to give Buddy up because he was too weak to bathe him.
“One day, before the aides started Alvin’s bath, one of them turned to the cute little pug. “Buddy,” she said, “will you let us give you a bath?” To their surprise, Buddy bounded into the bathroom and jumped into the tub. So, of course, Buddy got a bath.
“Now the aides bathe Buddy once a week, and that little wrinkly-faced dog is still doing his part as Alvin’s constant companion. I believe that Alvin’s suffering has been greatly decreased by this simple act of kindness. Bathing Buddy is not in the job description for home health aides, but those two aides have the right idea about doing what’s right for the patient!”
Carmella’s Way of Caring
Hospice aides are special people. Suzanne also tells the story of Carmella, a CNA in a nursing facility, who was caring for a rapidly declining man. “Bob became more lethargic toward each evening. The family would visit at different times during the day, but couldn’t come in the evenings due to work schedules and other family matters. During the last week of his life, Carmella would sit with Bob for a few minutes every evening, on her own time, just in case he woke up. The family was very appreciative of all her extra effort. “During the last day of Bob’s life, he was alert only part of the day. The family, notified by the facility’s nurse of his continuing decline, came to visit for a while and then left. I was on call later when the facility nurse notified me that Bob had expired. I asked if the family was in the room and was informed that family was present. I called our spiritual care coordinator and we rushed to the facility, arriving in about 15 minutes. “When I walked into the room, there was a lady sitting next to the bed holding Bob’s hand. To my surprise it was Carmella. She said the family had gone home about an hour before Bob passed. “I couldn’t bear the thought that he might die with no one there,” said Carmella. “By the time we arrived, she had repositioned Bob’s body and assured that he was presentable in case his family came back. When the family was notified of his demise, they said that they couldn’t return that evening but would pick his things up in the morning. I informed them that Carmella was here at the time of death, and they were extremely appreciative. I returned to Bob’s room and our spiritual counselor was ministering to Carmella. I held her hand. “This had been a particularly tough day for Carmella; this was the second patient to expire for whom she was the primary CNA. Even though she had prepared another patient’s body earlier that day and had seen all of her patients, she never forgot the ongoing gentle acts of kindness, compassion and sympathy. She is a prime example of our hospice mission statement: We will preserve the dignity of death for our patients and families so that no one will ever die in pain or alone. Everyone in our office is proud to be on the same team with her.”
Regular working hours often blur for hospice caregivers. It was Easter Sunday and Jen had been seeing her patients all morning, passing along her cheer and pleasant disposition to all she came in contact with. The last patient she saw was an elderly man, Bennett and his wife, Susan, who had no children or family with whom to celebrate Easter. At midday, Jen finished her schedule and went home to celebrate Easter with her immediate family. But thoughts of Bennett and Susan alone on Easter dampened her own holiday. So at 8 p.m. when Bennett answered the door, there was Jen with two plates of Easter dinner for Bennett and Susan to share. Bennett was so touched that he gave Jen a big hug and began to cry. “I can’t believe that someone would do something that thoughtful and nice for me and my wife,” he said.