Three Times a Caregiver

Commentary by Stan.

Many of us wonder what it would be like to become a caregiver. If you've done it once, you know the enormous physical and emotional toll it can take. Rarely do we anticipate doing it for a second or third time. In this poignant article Judith Brandes describes her feelings as she became a caregiver three times.

The First Time

My husband Herman’s parents were elderly. We thought they might not live much longer.

In 1957 we took our two-year-old son to visit them in Herman’s native Switzerland. Herman’s parents lived many more years.

The next year, our daughter was born and Herman was diagnosed with esophageal cancer. The disease was rarely seen in non-smokers under 80, his doctor said. Herman was 34.

He came home from our local hospital after the tumor was removed. I was afraid to change the gauze dressing covering his surgical scar. Like an arrow, it thrust diagonally across his chest.

People whispered when they talked about cancer. They called it The Big C. Although denial wasn’t mentioned often, it was part of the 1950s way of life. A magazine article of the time featured a wife who presented her terminally ill husband with tickets for a cruise she knew they would never take. My friend Erica took passport photos for our second trip to Switzerland, one I knew we would never take.

During Herman’s short-lived remission, we flew to Montreal with our children to visit his sisters for the last time.

I juggled our suitcases, the baby and my unspoken fears. I prepared soft foods Herman was allowed eat, drove him to doctors’ appointments and helped him shower. When I told my doctor I was too exhausted to continue taking care of my husband, he prescribed pills to keep me going. Years later, I later learned they were barbiturates.

When Herman began bleeding internally he was hospitalized in one of New York City’s major teaching hospitals. He was in a coma for six weeks before he died in the summer of 1959, just before our daughter’s first birthday.

The Second Time

In 1961 I married Fred, a widower with four young daughters. We raised our blended family and our son in upstate New York. Fred and I retired to Florida in 1989. By 2000, he felt the effects of essential tremor in his left arm. Despite the effects of the disease, he played ping-pong and planted fruit trees.

We read on the Internet, “Essential tremor is a neurological disorder that causes a rhythmic shaking. It's sometimes confused with Parkinson's disease.” At least he doesn’t have Parkinson’s, we thought.

“Your husband has Parkinson’s,” said our neighbor Julia, striding across our lawn to meet me for the first time. She was right. A neurologist confirmed Parkinson’s caused Fred’s right hand tremor. Julia had taken care of her husband, Ron, until he died of Parkinson’s and other major diseases.

Julia was the first caregiver I met and a fine role model.

Browsing the Internet, I found an online support group for caregivers of people with Parkinson’s. The members helped me through my caregiving days and comforted me when Fred, 84, died in 2009 after a brief stay in a hospice house. I’m still in touch with members of that international support group.

The Third Time

I remarried in January 2011. My new husband, Bob, was six years my junior. Because of our age difference, we believed Bob might need to take care of me if, like my mother, I developed Alzheimer’s disease. In May 2011 Bob was rushed to a hospital emergency room. It was just an asthma attack, we thought. A few months later, Bob, a non-smoker, was diagnosed with COPD, heart disease and Alzheimer’s disease. He opened his Bible daily, but never read past Genesis 33.

Bob’s doctor said more emergency room visits would be useless.  He offered to help us apply for home hospice care. Although I was in fairly good health for an 83-year-old woman, I was never strong. I welcomed the visits of the hospice nurse, social worker and the aide who showered and groomed Bob. With the help of our hospice nurse, I organized Bob’s medications. I prepared his favorite meals and learned –- on the advice of the hospice nurse –- to accept the times he refused to eat.

The hospice team arranged for Bob’s oxygen supplies and sent an aide to shower him twice a week. During that time I was hospitalized once for pneumonia, later, for a gastrointestinal illness. Despite my feeling that I couldn’t continue taking care of Bob, I resisted the team’s urging to place him in a facility.

Months later, I accepted the hospice social worker’s offer to help me apply for Bob’s admission to a skilled nursing facility. She also helped me prepare a complex application for Medicaid benefits. As his caregiver, I complained when the head nurse gave instructions for Bob to leave his familiar room and eat in the noisy dining room. “It’s like the Titanic,” he said.

After Bob died in October 2014 I became my own caregiver, catching up on my medical care and social contacts.

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