Documenting the decline of a doctor’s mind

Jo and Douglas Giese on their wedding day. The documentary, "A Caregiver's Diary," which Jo Giese made during the last year of her husband's life, will air on public radio's "This American Life" July 16 through 18.

At a time when more adults are caring for aging parents and terminally ill spouses, a Malibu writer shares her journey via a radio documentary.

By Pam Linn/Staff Writer

For three years, Jo Giese’s husband, Douglas, was ill but nobody knew what was wrong. Giese, an award-winning journalist and radio correspondent who lives in Malibu, eventually learned her husband was losing his memory from multifarct dementia, a disease related to Alzheimer’s. With her husband dying, Giese decide to begin recording his conversations, a project she has turned into a documentary that will air on public radio.

“By June last year, it was clear that his brain was dying, and he was having a series of little strokes, and a couple of massive ones,” Giese said.

Douglas Giese was in and out of the hospital emergency room on a regular basis. Twice, they thought he would die. Earlier, he had fallen in the bathroom and sliced his head open.

“We thought we were losing him then,” Giese said. “But after the massive stroke, he could breathe and see and hear and smell. All the other functions were gone. We thought again he was dying. But then when he came home, we had to have 24-hour caregivers.”

At that point, Giese decided to record her husband’s conversations with friends, relatives, doctors and caregivers, hoping to help others who face the same life-changing decisions. The documentary, “A Caregiver’s Diary,” will air on public radio’s “This American Life” July 16 through18.

“I talked to him about it at the beginning of the project,” Giese said. “He had taught medicine for years, and I told him it was for educational purposes. He was OK with that.”

Although many people have to wrestle with the choice between caring for someone at home or placing them in a nursing facility, Giese was spared the decision because her husband had signed an advance medical directive that stipulated he never wanted to be in a nursing home.

“A long time ago, we went and got the forms from the stationary store,” Giese said. “I understood it completely. I knew how he felt when he had to visit his patients in nursing homes. He felt very strongly about that.”

Giese was also spared the ethical dilemma of how much care to give when there’s no hope of regaining health. At first she wondered if they were just taking really great care of him and getting him in tip-top physical shape “so he could get full-blown dementia where he doesn’t recognize me or the dog.”

That is the great question in a disease like this, Giese said. “His doctor said it’s no longer a medical question, it’s an ethical question. When they reach the point where they don’t recognize anyone and can’t feed themselves, some go on a feeding tube. I was lucky he died from an infection while he still recognized me, so we didn’t have to deal with that issue.”

For most, it’s a very private question: What is quality of life for this family?

“He knew me until the very end. It wasn’t that he couldn’t remember where we had been on vacation. It was only short-term memory loss. He couldn’t remember what happened five minutes ago. And then sometimes he could. One moment he was fuzzy and confused and the next moment he was articulate and clear,” she said. “It just came and went like a curtain opening and closing. You never knew.”

When he wasn’t making sense, Giese did everything possible not to lose patience with him. “I would try to keep the irritation out of my voice,” she said. “I knew he wasn’t asking the same question 15 times because he wanted to.

“So I put white boards all over the house to remind him of the schedule. But sometimes he would forget to look at them. It’s a treacherously difficult situation.”

Through it all, Giese was able to continue working. It was with great difficulty she was able to do that. But Giese said it was also her salvation. “When I was out interviewing or working downtown at the studio, it gave me a little respite from the tragedy that was going on in my life.”

And it was the friends and relatives on Giese’s support team that allowed her to keep working.

“Ann Buck had a meditation class at her home on Carbon Beach at the time,” Giese said. “She had cared for her husband dying of pancreatic cancer and she said, ‘You can’t do this alone.’ She formed a team of people to help. I did the same thing. It was made up mostly of my neighbors, friends and doctors. I had no intention of walking this journey by myself. The shocking thing was that after he died, there was no one here.”

Giese noted that living in Malibu is a particular challenge because the labor pool to draw from is mostly entry-level workers, immigrants who live near Downtown Los Angeles. To get all the way out here, it’s a two-hour bus ride, she said. So the caregivers had to live in, working four-day and three-day shifts.

But Giese said her husband had lived in Malibu most of his life, and being near the ocean was important for him. “The Pacific Ocean was a sanctuary, a source of solace. It was an enormous help for us to be here. Every day we sat out on the deck watching the surfers. When he started to retreat into himself the last month of his life, he just couldn’t do it anymore. That was the saddest thing.”

The financial consequences of an illness like this are enormous. Many insurance policies don’t cover in-home care, so for some, the only recourse is to place the patient in a nursing home. And even then, many are forced to sell their homes. “It [the disease] could go on for 10 or 15 years,” Giese said. “And if it had, the consequences would have been dangerous.”

Giese said one of the most important things people dealing with a family member with such a disease should remember is not to hesitate to ask for help. “Get a team and know that you can’t do it alone. You’re going to get sick and burned out dealing with the enormous decisions you have to make,” she said. “If you ask people to do something, they want to help. They know it’s a crisis. If you give them a job to do, they’ll do it. My sister lives in Texas and she flew in every few weeks. She and Douglas had a wonderful relationship, she would do everything for him.”

The documentary was recorded from June 2003 through February 2004, and there were dozens of hours of tape. In the final editing process, three computers linked Giese with Ira Glass, producer and host of “This American Life” for Chicago Public Radio, and “A Caregiver’s Diary” producers Julie Snyder and Wendy Dorr in New York.

“Doing the documentary had pluses and minuses,” Giese said. “I’m sometimes drawn back to the worst personal crisis of my life. But that’s what writers and journalists do.”

Broadcast times of “This American Life” are listed in weekend editions of local daily newspapers.