WHEN AN OLDER ADULT HAS DEMENTIA

A WIFE HELPS MANAGE HER HUSBAND'S CANCER TREATMENT³

“Marjorie was a caregiver for her husband Ralph during his treatment for cancer. Marjorie and Ralph are a couple in their late 60s who live in a rural area 60 miles from any cancer specialist and hundreds of miles from a cancer center. Marjorie's caregiving experience was characterized by intense involvement during periods of active treatment punctuated by interludes when Ralph was feeling well and life returned to some semblance of normal. The intensive periods of caregiving involved assisting with self-care, providing emotional support, performing medical and nursing tasks, frequently driving long distances, identifying and coordinating home care services and other community resources, navigating local and distant healthcare systems, working out financial arrangements for cancer treatment, and applying for Medicaid. Marjorie served as the eyes and ears of health professionals when acute changes in Ralph's condition occurred at home. She monitored Ralph's condition, communicated her observations to doctors and nurses by phone, and took Ralph to an emergency room when necessary. Even during the interludes of more normal life, Marjorie remained vigilant about Ralph's health and well-being.

When Ralph was initially diagnosed with cancer, he was treated with surgery followed by radiation and chemotherapy. He was found to have diabetes during his hospitalization for surgery. He was discharged from the hospital late in the day, so the first time Marjorie tested his blood sugar and administered insulin without a nurse present in the car; it was dark during the 6-hour drive home. At home, Marjorie monitored the surgical incision and when she noticed drainage, she reported it to Ralph's physicians. She coordinated the treatment plan for the draining incision with physicians near home and the oncologic surgeon in the cancer center 6 hours away, and carried out their instructions at home. After the incision healed, Ralph received his radiation and chemotherapy treatments closer to home. However, the closest radiation treatment facility was still too far away to drive daily, so Ralph and Marjorie stayed in a motel 5 days a week, returning home on the weekends. Marjorie did the driving, played a key role in managing the radiation and chemotherapy side effects, tried to make sure Ralph got good nutrition in their temporary living quarters (taking into account that he had diabetes as well as cancer), and tried to think of ways to keep their spirits up while away from their family and friends. Constant vigilance was required, as Ralph suffered from severe nausea and vomiting and had an episode of delirium as a side effect from one of his medications.

Following the radiation and chemotherapy treatments, Ralph and Marjorie enjoyed an interlude of nearly normal activities at home for a while. However, the cancer recurred a year later. After considering all the alternatives, Ralph chose to have additional surgery, followed by more radiation and chemotherapy. The specialized treatment and follow-up meant traveling to the distant cancer center. Once again, Marjorie and Ralph lived in a motel room. More caregiving was required this time, including managing tube feedings, oxygen equipment, oral suctioning, and a regimen of 10 new medications, in addition to constant vigilance, symptom and side effect management, and emotional support. Marjorie provided a level of family caregiving that makes modern cancer treatment possible for rural-dwelling individuals.”

TWO STORIES OF JOB DISCRIMINATION⁴

“One caller to WorkLife Law's employee hotline took intermittent Family and Medical Leave Act leave to care for his wife. After he informed his employer that his wife would be going on long-term disability, his new supervisor told him that he must be in the office from 8 a.m. to 5 p.m. and that he could no longer flex his hours, telecommute, or work from home—despite the fact that the employer permitted and even encouraged all similarly situated employees to do so. The caller had been telecommuting, working from home, and flexing his hours for well over a decade with no detriment to his performance.”

“The largest individual jury verdict in an FRD [Family Responsibilities Discrimination] case to date ($11.65 million) involved a hospital maintenance worker, Chris Schultz, who was fired in 2002 while caring for his father with Alzheimer's disease and mother with congestive heart problems and severe diabetes. To help manage his parents' care, he asked to take intermittent leave, to which he was entitled under the federal Family and Medical Leave Act (FMLA). While he was on leave to care for his parents, his supervisor suddenly instituted a new quota system that was impossible for Schultz to meet. As a result, Schultz was fired for poor performance after 26 years as a dedicated employee with a record of excellent evaluations—the year before he began taking leave, his picture hung in the lobby as the hospital's outstanding worker of 1999.”