Wife Slips Into Madness As Husband Dies of Brain Tumor


John Graves' tumor was located in the frontal lobe, which controls personality and emotion -- "the things that make you who you are," according to his wife.

His short-term memory had started to fail and "he honestly didn't know where he was and how to get home," she said. "He'd be on the phone and not know who he was talking to.

"I thought maybe he was doing drugs and drinking or he was depressed and gambling," she said.

Her husband underwent surgery to remove the tumor, but, like a lobotomy, it rendered him emotionless. The steroid medication made him irritable and angry. He suffered repeated seizures.

Graves was sent home to care for him, not knowing when he would die.

"The doctors said it could go on for a couple of years with no end in sight," she said. "I was so depressed."

And, she admits, resentful.

Her husband's personality remained "flat" and he was incapable of showing appreciation for her efforts and besides her children, few family members or neighbors offered to help.

Their business crumbled with the economic downturn and their inability to work.

"I didn't leave the house for six months," she said. "I was homebound and had no interaction with other people."

Even the medical professionals had little sympathy, she said.

"It was so about the patient -- there was nothing for me," she said.

"I held together really well," Graves said. "People commented that I was doing such a great job."

But after he died, she never dealt with the grief and plunged forward on "autopilot," even dating. Eventually the stress of care-giving hit her.

"I crashed," said Graves, who eventually sought counseling and was put in an intensive outpatient treatment program.

She was diagnosed with post-traumatic stress and dissociative disorder.

"I check out mentally," she said. "On the outside I looked normal, but I was so disconnected and far away. ... I had alienated myself from everyone, even from myself."

Care-giving experts like Lynn Feinberg of AARP say that caregiver stress is a "huge issue."

"The most important point is that health care professionals don't often help families recognize they are in a care-giving role and need support, not only in caring procedures but also in bereavement," she said.

Americans provide an estimated $450 billion in home care for their sick and dying family members, according to Feinberg.

"What doesn't exist is a structure to support these folks. They have to find their way in an unconnected network of support at a time when they are most stressed."

Graves agrees. Today, she is working with Barrow Neurological Institute, where her husband was treated, to educate health professionals about paying more attention to the needs of caregivers.

"This is huge, huge, huge," Graves said. "Caregivers have overwhelming responsibility and not a lot of support."

Even today, she is feeling the "aftershocks" of experience, but Graves said seeking therapy and writing her memoir have helped bring her back.

"I wanted to have a voice to my story and to help reach out to others who need someone to connect with," she said. "That was the worst part -- feeling so alone."

"The longer life goes on, the more I am connecting," Graves said. Their collective children, now aged 16 to 28, are thriving and her stepdaughter is pregnant with the first grandchild.

And Graves is back at work, this time as a production assistant in casting.

"It's strange -- I was so removed," she said. "But now, I remember the good times."

For to learn more about research on caregivers and care-giving go to the AARP Public Policy Institute.

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