“It’s an honor and a privilege to work with people in their last weeks or months. They are often so much more open to life.”
Name: Carolyn Richar
Age: 57
Current Job: Executive director of Capital Caring (Arlington/East Fairfax region), a nonprofit that supports patients and families coping with life-limiting or end-of-life conditions. Headquartered in Falls Church, Capital Caring serves nearly 7,000 hospice patients and almost 1,900 palliative care patients per year in Virginia, D.C. and Maryland, regardless of their ability to pay. In 2016, it provided $3.4 million in charity care to those without insurance coverage. Richar is also an ordained minister with Bethel United Church of Christ in Arlington.
Lives in: Annandale, with her husband, David Diesselhorst, an architect and college baseball umpire.
Day by Day: The vast majority of hospice patients are served at home. A typical stay at our Arlington intake center—for patients whose symptoms aren’t yet under control and/or whose families are learning to care for them—is just five and a half days. Here I’m up on the floor, dropping in on patients. Because I’m both a registered nurse and a minister, I help out where I can. Sometimes patients say, “Oh, the chaplain’s here. I must be dying.” I tell them, “Not this minute; I’m just here to meet you!”
On Timing: Relatives typically wonder if they came in too early. People think hospice is for the last week of life. Actually, Medicare provides for six months of hospice benefits. We want to get to know you and your loved ones so trust can build, medications and equipment are in place, and we know the patient’s history.
Relief Work: I deal with insurance and call every patient and family, asking what needs we can help with. In other parts of health care, you focus on the patient. In hospice, we get to focus on the whole family. We encourage family caregivers to get some rest, to take time for themselves. And in workshops and talks, I explain the hospice benefit and palliative care.
Depressing? Yes, sometimes. But it’s an honor and a privilege to work with people in their last weeks or months. They are often so much more open to life. We get to see relationships that may have been estranged for years come back together. All of us who stay in hospice work long-term have our own ways of coping. People will die whether we’re here or not, but we can make it better for them and their loved ones.
Frustrations: Knowing how many more people we could be taking care of. Having people come in at the last minute, when we could have been caring for body, mind and soul so much longer. So many people use the hospice benefit for one month when they could use it for six. It includes medical team visits, equipment, medications, 24/7 phone access to clinical experts and urgent care as needed. You’ve paid for it!
Finding the Positive: Patients can be frustrated or confused or annoyed. Some ask, “Why am I here? I don’t know.” I’ve responded, “Do you think maybe your family’s learning from you? Might caring for you be teaching your grandchildren to care for their parents?” Patients come to see that their very presence can be a gift to others.
Physical vs. Spiritual: A nursing degree is practical. I can check medications, breathing patterns, heart rate… In the end, though, what brings meaning to the physical is the spiritual. A philosophy major who described himself as an atheist and I had some discussions about [why his existence] mattered [and the significance of having] lived. Others are very much hoping and praying for a miracle. I believe God brings us miracles—just not always the miracles we expect.
Young and Old: We’re the only hospice in the area that cares for children. The mother of a 7-year-old was not ready for her daughter to die. The girl held her mom’s hand and said, “Mom, the baby angels are coming to play with me. I met baby Jesus, and he’s a nice boy.” She wasn’t afraid of dying. For the mother, it was still heartbreaking. But I could find joy knowing that the girl was at peace and had even found comfort.
Surprises: One thing people don’t know is we do discharge patients. Studies show that people in hospice tend to live longer than those with similar conditions who are not in hospice. One woman came to us at age 104; we discharged her twice before she died at 106. She was home vacuuming and cooking in between!
Final Hours: Often patients in their last days will lose their appetite. This tends to upset the family, but it’s a natural bodily response. Forcing food on the patient may actually make things worse. Not everything happens to everybody, but it’s also common for some people to begin saying that loved ones who’ve died are there with them. There may be a “death rattle,” which isn’t actually difficulty breathing, but rather the sound of saliva on the vocal cords. There can be longer gaps between breaths near the end, and mottling—the fingers and toes turn bluish as the circulatory system is shutting down. Of course, some people show these signs, then perk up.
Letting go: We’ve seen patients hang on until someone arrives or leaves. So we advise family members not to stick by the bedside at all times…take breaks. It’s our experience that if it’s extremely important for a patient to have you there, they’ll make sure you are—or vice versa. Sometimes they want you out of the room when they pass. It’s nothing against you; they’re sparing you. Maybe it’s because they love you so much. Some people just know when it’s time. Long ago, a gentleman told a therapist, “Goodbye, I won’t be seeing you again,” after his morning appointment. He died a few hours later, after lunch.
Wisdom Distilled: Live life well today. Don’t put off what’s important. Don’t sweat the small stuff. Say “I love you” whenever you can. Say “thank you.” Life has an end date—I don’t know what it is; I don’t want to know when it is—but it will end at some point. I can’t run away from it. I’m also not afraid. That time will come. It’s a gift I’ve learned from so many others here.