They all told me I couldn't do it. Some told me I was crazy even to attempt it. Imagine taking a severely ill 97-year-old man into your home.
My dear father had just had a massive stroke at his home in upstate New York. When I arrived at his bedside, the internist told me that he had suffered irreversible brain damage and would probably die within the week. He refused even to order a neurological exam and ordered that he be given only basic fluids, but no real nutrition.
However, I wasn't ready to write off my father so quickly. His lifelong spunk and fantastic attitude were factors that I believed could help prolong his life and perhaps enable him to recover to some extent. Our family sought the advice of rabbis renowned for their extensive knowledge of halacha and medical ethics. They told us that it was forbidden to deprive a patient in my father's condition of nutritional support. We summoned the internist and insisted he provide him with both nutrition and a full neurological work-up. For the moment, we were holding death at bay.
The neurologist came in to my father's room and said: "Sir, if you can hear me, put up one finger."My father's finger shot up.
Once the doctor's expectation for a speedy demise seemed not quite so certain, I decided to bring my father back to Santa Monica and have his care given in my home. "You can't do it," the hospital administrator warned me (the first in a long list to warn me). "Do what I did with my mother. Send him to the nearby home for the elderly."
He was convinced, as were the discharge planners and doctors, that the premise was unreasonable. At the very least, I would suffer the burnout so common in these situations.
I was not an innocent in these matters. I had spent years as a social worker, working in and consulting to nursing homes. I knew my father would never survive in one. Of course, I knew I could not give him the actual care myself, but we could hire full-time caretakers, around the clock, for care at home.
After all the love he had shown me, I had no choice but to go forward and take him home. My husband Allan agreed. "We have to do it an any cost," he reassured me.
We spent an entire month preparing before bringing him to Santa Monica. We fixed up a room, we lined up a Medicare home health agency, and we interviewed and hired our own 24-hour caretakers and other therapists. We found doctors in all required specialties. We set up files for prescriptions, legal issues, medical records, insurance cards, phone numbers, etc.
We made sure that key staff were present to greet him when he arrived. The day his private hospital jet from New York landed in Santa Monica was one of the most exciting moments of our lives. But at the same time I was scared. Would we know what to do?
By the second evening I was exhausted. However, within a few days we had a routine going. Allan did all the shopping for the medicines and supplies. We soon took my father in the wheelchair van service to meet his new doctors.
Our biggest hurdle was how to manage if my father's assets ran out. I sell long-term care insurance and had even sold a policy to my 87-year-old mother-in-law. But my father was already too old to buy coverage with good home-care benefits when they became available during the 1990s. Nevertheless, my father needed the care, and we began to spend down his assets at a monthly clip of $10,000.
We grew up in a modest home and my father supported us with his retail business. When he came to the U.S. at age 21, he borrowed (and paid back) money to send for other relatives who were stranded in Europe. Much of the money he had earned and saved was spent on home care for our mother during her later years. In addition, for the two years prior to his stroke, after several serious falls, he spent $70,000 a year for his own round-the-clock care. In short, a significant part of his assets had already been depleted. But for my brother, sister and me, a nursing home was not an option, although the costs were considerably less. We were convinced he wouldn't survive long in a nursing facility where he would have care for only about three hours a day. At home, a caretaker is standing by at every moment. Additionally, I wanted to be near and live out his last days with him.
So I carefully tried to balance how much to spend on his caretakers, physical and speech therapy, and supplies and equipment. I never knew if the funds were going to run out, and I lived with great apprehension about what would happen should his assets become completely depleted.
During my many years as a gerontological social worker, I never advised a family to adopt the route I followed. Bringing an elderly, ill parent into your own home is a very personal decision. However, I have discovered that with the proper understanding of how to use caretakers and care managers to your advantage, and with the proper legal and financial planning years ahead of time, many of us can live out our lives in comfort and dignity in our own homes, even after a serious medical setback.
Our family, friends, caretakers and doctors had great satisfaction when my father's condition improved dramatically early last spring. He enjoyed my sister playing the piano and our singing at the Shabbat table. He was so happy to once again participate in conversations. He spoke clearly, and we listened in wonder as he told us the final stories of his life and shared his love and concern for all of us. He was kind and philosophical and affected us all with the calm way he handled adversity.
Late in May, 11 months after his stroke, my father passed away. On his very last day, our friend, Dr. Eben Feinstein, expressed amazement at how good he looked because of the excellent care he had been receiving.
Those months together were precious to our caregivers, doctors, friends and relatives - precious to us all. I have gained a quiet but strong peace of mind knowing that my father was as comfortable as possible as we shared his last year together.
Karen Shoff, MSW, MSG, LUTCF can be reached by phone at (310) 399-6644 or by e-mail firstname.lastname@example.org
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