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Fortunately, we were able to postpone any hardnosed decisions about moving dad for the first 4 months. His Medicare and the Medicare Supplemental insurance covered 100% of the Skilled Nursing/Rehabilitation expenses for almost 100 days. As long as he was slowly improving with Physical and Occupational therapy, his insurance would continue to pay. But once his progress plateaued or he reached the 100-day maximum for Medicare coverage, private pay would have to start picking up the tab. And it would be a fairly large tab, to the tune of $350/day plus supplies and therapy charges as needed. My sister and I stayed informed about our dad’s progress by participating in regularly scheduled “case conferences” with his “care team” (Social Worker, RN, Physical Therapist, Occupational Therapist, and Assistant Administrator) by long-distance conference calls. We also made long distance (2500 miles one way) trips to alternately visit our parents at least every 3 months.

During the time when we were “on the ground” with our mom, visiting our dad every day, it became clear that she was not ready, nor would she ever be ready, to take care of our dad at home again. In our mom’s words, “it would be too depressing to have Dad home”, and “it would bring me down too”. When Medicare finally denied further coverage, Dad was still a 2-person hands-on assist for all transfers. He could barely bear weight, nor could he bathe, toilet, groom or dress himself without full hands-on assistance. Home care quickly became a non-option both financially (at over $750+/day with 24/7 care or two 12-hr shifts) and logistically (2 person assist).

And so, dad stayed on at the same facility. He was moved from an inside double-room on the 3rd floor “Medicare” wing to a room with a large picture window on the 2nd floor sub-acute/dementia care wing. And our mom started paying 100% “out of pocket” for all his expenses. He had a call-bell for help when he remembered. He also shared the same nursing aide with 10-12+ other residents during the day shift and 20+ other residents during the night shift. His room had a linoleum floor and contained an electric hospital bed, overhead 16” TV, a 2-drawer bedside table, a 6-drawer chest of drawers, 1 chair, and a 36” wide wooden closet. The double-room shared a large wheelchair accessible shower/toilet with another resident. The 10’ X 15’ “living space” was separated by a floor-to-ceiling curtain. Some would call his new home “minimalist”, but we considered it small, stark and sterile. We had all entered a new phase of living with chronic long-term disability.

Question: How do we define quality of life and how do we get there?