Giffords must adjust to home after months of care

[June 17, 2011]  HOUSTON (AP) -- In the long run, Rep. Gabrielle Giffords should flourish from returning to a home life with her husband. But in the days and weeks ahead, she and her family will have to make difficult adjustments to this new phase in her recovery.

While Giffords gets used to living outside a hospital for the first time in more than six months, her family -- especially her astronaut husband, Mark Kelly -- will learn to care for a person who still has significant cognitive and physical problems caused by a devastating gunshot wound to the head.

"It's really an emotional roller-coaster," said Dr. Richard Riggs, chairman of physical medicine and rehabilitation at Cedars-Sinai Medical Center in Los Angeles.

The 41-year-old lawmaker left the hospital on Wednesday and moved to her husband's home in a Houston suburb not far from the Johnson Space Center.

Visitors came and went, including Kelly's brother Scott, also a NASA astronaut, and Giffords' mother, Gloria, who brought groceries.

It's a far cry from hospital life, where staff members monitor who visits, how long they stay, and even things like how much light is in a room. The rules help patients recovering from brain injuries by minimizing excess stimulation that they can find confusing and irritating.

Pets, children, phone calls, mail delivery, cooking -- these are routine interruptions Giffords has lived without for nearly six months, Riggs said.

"There's going to be commotion, there's going to be activity," Riggs said.

In the long-term, it will help Giffords reintegrate into society, he said. In the short-term, the stimulation will likely be exhausting.

At the same time, the family will be torn between being caregivers and maintaining their normal relationship with Giffords. While Giffords will have a 24-hour home care assistant and will go to the hospital daily for intensive therapy, her family will still carry some of the burden.

"It's a hard balance," said Cara Camiolo Reddy, head of the brain injury program at UPMC Rehabilitation Institute in Pittsburgh. "You want to be there and care for them, but you also want to get back to your normal relationships with that person, so there's a lot of challenges there emotionally."

Some patients don't know, for example, that it's unsafe for them to drive or climb the stairs unassisted. Relatives are torn between wanting to give their family member freedom while also protecting them, Camiolo said.

"The patient will ask, when can I go back to work? When can I drive? Why do you keep following me?" Camiolo explained. "The patient can get angry at the family member for not letting them do things."

The benefits of being at home, though, can be great.

Giffords will get to try out the activities she's been practicing -- things like getting into and out of a bathtub, walking on an uneven surface, like a sidewalk, or opening and closing the refrigerator, Riggs said.

"In the hospital you get rehab but lose focus of why this is important," Riggs said. "When you put them at home, in the real-life situation, they do get motivated."

Giffords' husband acknowledged his wife didn't like being confined to the hospital she transferred to in late January, weeks after she was shot on Jan. 8 at a meeting with constituents in Tucson.

"Living and working in a rehab facility for five months straight has been especially challenging for her," he said.

Six people were killed in the rampage that injured Giffords and 12 others.

It will be months before doctors know what permanent impairments Giffords will have and whether the Democrat will be able to return to her job in the House of Representatives, or seek Arizona's open Senate seat. Chief of Staff Pia Carusone recently told the Arizona Republic that Giffords can speak, but struggles to put together complex thoughts and sentences. And while she can walk with assistance, she still sometimes needs a wheelchair -- like when she was in Florida in May watching Kelly rocket into space as commander of space shuttle Endeavour.

Outside the hospital, a person's deficiencies also become more apparent, not only to the family but to the patient. Typically, after going home, the patient begins to comprehend the extent of their injuries and the long-term consequences, Riggs said.

It can be frightening and depressing, he said.

Ron Barber, a Giffords' staff member who was also shot in the rampage and is still recovering from gunshot wounds to the face and leg, said he and his wife were initially apprehensive when he was released from the hospital.

But within two days -- after a nurse helped them rearrange furniture so he could get around and a home care assistant arrived -- they realized how much better it was to be home.

"Being home, there's nothing like it," Barber said. "You're in familiar surroundings, with family."

[Associated Press; By RAMIT PLUSHNICK-MASTI]

Associated Press writer Amanda Lee Myers in Phoenix contributed to this report. Photographer David Phillip contributed from Houston.

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