By Karen Shoff
Published in the Jewish Journal Sept 1, 2000

They all told me I couldn’t do it. Some told me I was crazy to even 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 Dad had suffered irreversible brain damage and would probably die within the week. He refused to even order a neurological exam, and had 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 [Jewish law] 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 Dad with both nutrition and a full neurological workup. For the moment, we were holding death at bay.

The neurologist came into Dad’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 for care in our home. "You can’t do it," the hospital administrator warned me (he was 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. My father would never survive in one. Of course, I could not provide the actual nursing care myself, but knew that we could hire full-time caregivers, around the clock, for care at our home.

After all the love he had shown me, I had no choice but to go forward and begin plans to take him home. My husband, Allan, agreed: "We have to do it at 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 interviewed and hired our own 24-hour caregivers 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 services, 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 $72,000 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 caregiver is standing by at every moment. Additionally, I wanted to be near him and share his last days with him.

So, I carefully tried to balance how much to spend on his caregivers, on physical and speech therapy, and on supplies and equipment. I lived with great apprehension about what would happen should his funds run out.

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 caregivers 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, caregivers and doctors had great satisfaction when my father’s condition improved dramatically early last spring. He enjoyed hearing my sister play the piano, and our singing at the Sabbath 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 calm way he handled adversities affected us all.

Late in May of 2000, 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.

E-mail your own home care success stories to me at:

success@longtermcarela.com

 

I will be happy to share more details about ways to plan ahead to assure that any future care you may need can be given to you at home, in dignity.



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