A Son's Devotion: Operating a One‐Man Intensive Care Home Facility

Abstract

In June 2006, Elsa Weiser was a frail elderly Holocaust survivor suffering from congestive heart failure, severe osteoporosis, chronic obstructive pulmonary disease, and asthma. For several years her son, Manny Weiser, a trained emergency medical technician and Hasidic Orthodox Jew, had administered her medications and consulted with her physicians. After she collapsed at her granddaughter's wedding, Elsa was transported to New York's Mount Sinai Hospital. During her three-week recovery, Manny kept constant vigil at her bedside, rarely leaving the room. When Elsa was deemed stable, her physicians advised she transfer to a nursing home. Elsa said to her son, “If you are thinking of putting me in a nursing home, drive me to the cemetery right now and leave me there.” Manny decided to abandon all but essential activities, to sell property to cover expenses, and to prepare himself for the enormous task of taking care of his mother himself at home. Manny purchased and installed essential equipment and trained himself in their use. Elsa's doctor reviewed Manny's plan of care and authorized she be released to her son's care. A system of close communication and consultation was planned with her physicians. Additionally, Elsa would be brought to the ER once every two to four weeks for evaluation and be released to home care when all was judged to be OK. There is nothing special in what I am doing. My mom did everything she could for me. Now I am doing everything I can for her. —Manny Weiser Manny's program of care is meticulously planned and anticipates a large variety of potentially rapid adverse events. Elsa's state can easily shift between extremes. Manny constantly checks for changes in his mother's condition. Routine tasks include vital sign monitoring; frequent checking, adjusting, cleaning, and changing dressings on the tracheotomy site, the g-tube site, and the permacath site; wound care dressing for pressure sores; routine skin and eye care; washing; passive range of motion exercises; and numerous other tasks. Throughout the day, the dozens of required medications are given through the g-tube, via nebulizer, subcutaneously, intramuscularly, and, when necessary, via an IV. There have been ups and downs. In the hospital, Elsa acquired numerous pressure sores, some of which were osteomyelitis positive and gangrenous. A plastic surgeon and Manny treated her legs, using partial debridement of tissue, high-dose antibiotics, and application of surgical collagen preparations. With the course of treatment received to date, the patient is approaching complete recovery. Extended use of a feeding tube resulted in diabetes. During a hospitalization, kidney failure occurred. Manny's mother became the first patient approved for home hemodialysis in New York state, and a NxStage home hemodialysis unit is now being used with a central-line catheter, backed up by the support team of Life Care Dialysis of New York City. The home dialysis unit is now the linchpin of the entire home setup, and it has provided unanticipated benefits. Manny reports very high satisfaction with its seamless integration into his mother's care and performs dialysis six days a week. Rather than Elsa facing the complications of high potassium levels, her dialysis is so efficient that her potassium is maintained at a sufficiently low level to require supplements. Furthermore, the daily, gradual dialysis permits liberal use of intravenous feeds because fluid buildup is low. Additional benefits are better wound healing and less fluid overload in the respiratory system. Manny sleeps in his mother's room, ready to be awakened by the various equipment alarms or an attending nurse. Very brief absences, for administrative needs or to get supplies, are carefully coordinated with nurses. Manny attended Passover Seder upstairs in his family's apartment, but was called back every few minutes by a nurse who was stationed downstairs. On the high holidays, an ICU nurse is hired, allowing Manny to attend synagogue services for a few hours. His children visit him and their grandmother in the room but know not to disturb him when he is attending to her. Kabed et avichah v'et imechah. Honor your father and your mother. Manny says that people rarely reflect on how much their parents do for them. “There is nothing special in what I am doing. My mom did everything she could for me. Now I am doing everything I can for her,” he says. When asked how he manages to do it all, Manny explains that the more one does for one's parents, the more one wants to do. “Come back in a month. You will see. She will be well enough to sit in a wheelchair with only an oxygen tank. I'll be walking her around in the garden, and we will have some coffee together.”