The Long Goodbye
A Caregivers Trial of Faith

Joe D’Arienzo has spent 11 years saying goodbye to his wife Gertrude. Sometimes when he talks to her, she knows him, other times he’s a stranger. The Jacksonville couple has been together for more than 60 years and now Alzheimer’s disease is slowly pulling them apart.

Alzheimer’s is frequently called “The Long Goodbye.” It is an irreversible form of dementia affecting 4.5 million Americans. Symptoms include memory loss, disorientation, impaired judgment and personality changes. While some medications can slow the progress of the disease, there is no cure.

Joe calls Alzheimer’s “a beast of burdens.” At times it has both bewildered and embittered him. He wrestles with questions about his faith, his ability to control his anger, his rollercoaster emotions and his growing sense of helplessness watching his wife slowly fade away.

Joe and Gertrude were both 19 when they met in Massena, N.Y., in 1940. They were married in 1943, while Joe was in the service during World War II. After a series of job related moves, they eventually settled in northern California where Joe was vice president and treasurer of an independent oil company. He took early retirement in 1979, looking forward to many tranquil years with Gertrude.

In 1994 Gertrude began losing her short-term memory. He took her to a number of doctors and Gertrude was diagnosed with Alzheimer’s.

Joe was able to take care of Gertrude by himself for a few years. He could leave her at home while he slipped away for a few hours to run errands. Gradually, as her condition deteriorated, he took over more of the things his wife used to do. He stopped playing golf and socializing with friends. Doctor’s visits were more frequent, household chores and caring for Gertrude stole away the time, eventually wearing him down to the point where his own health began to suffer. Joe was slowly losing control of his life. His anger and resentment bubbled, and then it boiled over.

“I would get mad at God,” he said. “I talked to him and he just said “pray.” Why did he do this to me? He’s not supposed to give me more than I can handle.”

Joe was given a booklet with readings from the Book of Job – the Old Testament figure tested by God.

“I’m not Job, I try, but I’m just not,” he said, his eyes rimming with tears and his voice cracking. “I would tell God, ‘My name is Joe, not Job.’”

He says there were times when Gertrude got on his nerves, out of frustration he yelled at her and then instantly felt remorseful.

“It’s not her fault,” he said. “You get angry, and you don’t know why.”

As Gertrude’s condition deteriorated, a doctor tried to convince Joe to move Gertrude to a nursing home. He angrily refused, his justification based on his wedding vows – for better or for worse, in sickness and in health.

“They said (nursing home care) would help me because then I can get away,” he said. “Where would I go? What would I do? Come home to an empty house? As rough as it is, it would be rougher without her. Sixty-two years (of marriage) is a lifetime. I can’t see my life without her.”

Sister of Mercy Barbara Supanich, a family physician for 25 years, has seen many cases of “caregiver burnout” with patients suffering a crisis of faith. She was recently named to a fellowship in palliative medicine established by Community Hospice of Northeast Florida and Mayo Clinic in Jacksonville. Dr. Supanich said she often counsels caregivers who questioned the existence of God.

“I’ve said, ‘Well, maybe you ought to rethink this, maybe there is a God, because you’re here with me, someone who can help you find resources to take care of your loved one,’” Dr. Supanich said. “Most of the time caregivers say these things out of frustration, when they’re feeling vulnerable and alone.”

Dr. Supanich recommends that caregivers join an Alzheimer’s support group, talk to a clergy member or mental health specialist and arrange for part-time assistance.

In 2000, the D’Arienzos moved from California to Jacksonville at the urging of Joe’s nephew who lives in Ponte Vedra Beach. They are currently living in an apartment and are getting ready to purchase a condominium in a retirement community. While he is still the primary caregiver, at 84, Joe now has a part-time nurse to help him care for Gertrude.

The medical community strongly recommends that caregivers seek help when caring for a loved one with long-term health issues. Joe has hired a nurse to help with Gertrude’s care at home.

To help cope with the strain of care giving, Joe joined an Alzheimer’s support group and talks to a social worker every three weeks.

Friends urged him to go on a private retreat at Marywood. At first Joe was nervous leaving Gertrude, but he found the separation didn’t upset her. At Marywood he reads the Bible, walks the Stations of the Cross in the woods, meditates and prays at the statue of Mary. It is his way of recharging himself emotionally and spiritually.

At the end of our interview, Joe walks through the living room to the front door. Gertrude appears, bundled in a heavy sweater and wearing an upturned smile. She looks at Joe with wide, childlike eyes. He asked her where she’s going.

“I’m going to go see Mother,” Gertrude said.

“Gert, your mother’s in heaven,” he said.

“Well, then I’ll just go up there and see her,” she replied.

A key is needed to unlock the front door; the lock was installed to keep Gertrude from wandering from the apartment. At the sound of keys, she firmly grabbed Joe’s hand.

“You’re not leaving me, are you?” she asked. Joe holds her as he opens the door to let his visitor out. He smiled at her.

“No, Gert, I’m never going to leave you,” he said.