If you knew Grandma Neva, you had a seat in her kitchen. The Iowa Farmer’s Wife, known for her homemade bread, had a heart for hospitality. UPS workers timed their deliveries around lunchtime, and “if you hit cocktail hour, you’d be offered a cold margarita,” laughs Neva’s Daughter-in-Law, Kelly Jo.
Neva had always been vibrant and active. She helped her husband drive tractors on the farm in “small-town” Yale, Iowa. The couple [junior high sweethearts] had three boys who loved football. Neva never missed a game. Her greatest love in life was her family.
Then the worst happened. Neva’s health began to fail.
Neva no longer wanted to eat because it was a challenge for her to swallow. She stopped interacting with friends because speech became difficult— Neva began writing notes to communicate with her family
“It escalated quickly,” family members say. “We went from seeing her standing and holding a grandbaby in May and working in her garden in June, to being unable to walk at all in September. She was losing weight rapidly as well as strength.”
Local doctors remained baffled, so the family contacted the Mayo Clinic, known for their expertise in diagnosing complex diseases. Learning an appointment would not be available for another month, Neva’s son, a pilot for Pioneer, chartered a plane to Minnesota where the family checked Neva into the Mayo Clinic’s emergency room. The family stayed in the waiting area for five days while doctors poked and prodded Neva to see what was wrong.
Test results revealed Neva had ALS, a progressive neurological disease that causes muscle weakness and eventually leads to death. Doctors said that Neva would need a tracheotomy and breathing machine to live, but Neva shook her head no. According to the family, the doctor was upset by her response and said she couldn’t survive without this procedure. She still shook her head no. A psychiatrist tried to convince Neva to push on with measures to prolong her life, saying she was “not in her right mind.” Neva scribbled on a piece of paper: she had not lost her mind and simply didn’t want to be dependent on a breathing machine to live.
Though Kelly Jo had been taking excellent care of her, Neva was moved to a nursing home where 24-hour care could be provided. Additionally, someone suggested the family obtain hospice services to support Neva and make her more comfortable during the last phases of her life. The family called Hospice of the Midwest for help. “The hospice social worker explained hospice services to us. I didn’t even know we could have hospice in a nursing home,” said Kelly Jo. “Hospice of the Midwest allowed me to instruct them on every detail of how I had been doing Grandma Neva’s care so that it could remain the same, whether I was there or not. That was really important to us.” The family was able to live without the fear of Grandma Neva falling off the commode or bruising in the shower while remaining involved in her life and her care.
Hospice of the Midwest made sure that Neva’s room in the nursing home was comfortable for Neva and her family. They paid attention to every detail, even picking up pizza when extended family members arrived. The nurses were responsive to every need, visiting at 4:00 am one morning when Neva’s breathing changed. Hospice [of the Midwest] received a call and rushed right over to assess her condition and make her as comfortable as possible.
Hospice of the Midwest’s social worker assisted the family with one of Neva’s final wishes—a cocktail hour for Neva and her dearest girlfriends, something Neva enjoyed pre-nursing home. Such extra levels of service allowed the family to truly cherish their last moments with Grandma Neva. The moments before her death were happy ones—lots of family visits and time spent reminiscing over tales of fishing for snapper, gardening, shopping and “gambling nickels until she just couldn’t sit there no more.”
“We are extremely grateful to Hospice of the Midwest,” say family members. “The hospice staff was constantly in contact with us. Even today, their bereavement counselor calls out of the blue to see how the family is doing.”
Stories like Neva’s illustrate how families experiencing the same issues might distinguish hospice myth from fact and benefit from hospice services.Myth: Hospice means I’ve given up on my loved one.
Fact: Hospice does not mean “giving up hope”, but can help people revise what they may hope for. Hospice focuses on maximizing the quality of life based on individual’s choices, so that the person may live life as fully as possible.
Myth: Hospice is a place.
Fact: Hospice care usually takes place in the home, but can be provided in any environment in which you live, including nursing homes, assisted living facilities, and residential care facilities.
Myth: Hospice will make my loved one die faster.
Fact: Receiving hospice care does not mean death is imminent. In fact, there is proof that many hospice patients live longer. The earlier an individual receives hospice care, the more opportunity there is to stabilize the medical condition and address other needs. While hospice care is generally focused on patients where life expectancy is six months or less, some individuals actually improve and may be discharged from hospice care. They can then be re-admitted later when it is necessary.
A fascinating article in The New Yorker dispels this myth, and describes a study showing that hospice patients sometimes even live longer than patients who are not receiving hospice:
“…Researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.”
Myth: Families have to pay for hospice care.
Fact: Hospice care is covered by Medicare, Medi-Cal and most private insurances. Optimal Hospice Care and Optimal Hospice Foundation want all families to have access to hospice care, regardless of their ability to pay. The Optimal Hospice Foundation is there to fill the gap for families who are uninsured or whose insurance benefits have run out.
Myth: Hospice is just for the patient.
Fact: Hospice provides comfort care to patients, as well as respite and emotional support to family members. The quality of life – not only for the patient, but also family members and others who are caregivers – is the highest priority. Bereavement support is offered for at lest a year following the death of a loved one.
“Do something that you are passionate about, something that you want to do day-in and day-out to make a difference,” says Lynnea Andersen, Executive Director for Hospice of the Midwest. Lynnea is a social worker who has enjoyed her work in hospice care since 1998.
Why did you choose hospice/home care?
Lynnea Andersen: I wanted to help people in delicate, life-changing situations; I wanted to help create and preserve memories and make life special at a tough time. Most of all–to help families see that hospice isn’t the end, and instead, is the beginning to living your life to the fullest–no matter how long or short our time is.What is your favorite memory of serving a patient?Sitting with a patient who was nearing the end of his life. I was pregnant at the time…soon to have my first child. Sitting at his bedside, he put his hand on my cheek and said “you are going to make a great mom. The time will go fast, so be attentive. Let me tell you about my first child…” He spoke proudly of his daughter, all the trials and tribulations that they had together. I walked outside the patient’s room to find his only daughter listening: “I have never heard some of the things my dad talked about; thank you so much.” That was a turning point for me, and made me realize how important it is to be there for a patient — in whatever capacity they need you.What’s on your bucket list?1. Live each day to the fullest; 2. Trip to Alaska with my family; 3. Trip to Australia with my family.
