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Sunday, December 27, 2009

Wife outlines dementia patient's end of life

Tommy Rhodes, featured in the "Age of Uncertainty" series, died Christmas Day.

Tommy Rhodes, featured in the 'Age of Uncertainty' series, died Christmas Day.

The Roanoke Times | File

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Special multimedia series: Age of Uncertainty

It was not the ending that Linda Rhodes had wished for her husband, Tommy, who died Christmas Day at the Virginia Veterans Care Center.

If she'd had her way, she would have kept Tommy in the Williamson Road-area home they shared for decades. Her struggle, documented in The Roanoke Times' 2008 "Age of Uncertainty" series, illustrated the demands of dementia on caregivers, especially on younger ones such as Linda who still work full time.

For almost eight years, Linda was determined not to place her husband of 41 years, who had severe dementia, in a nursing home. But her body had ideas of its own: a herniated disc, an inflamed Achilles tendon and a knee whose cartilage was worn beyond repair.

"You're a surgeon's nightmare," her doctor told her.

Back in April, in preparation for her second surgery of the year, she finally took the myriad advice she was given -- by doctors and relatives, by friends and strangers alike -- and placed Tommy in a nursing home.

She said she knew how Moses' mother must have felt when she put her baby in a basket and sent him adrift amid the Nile River reeds. "She had to do what was best for him, not what was best for her."

'I have no choice'

She had put their house on the market in fall 2008 in hopes of using the proceeds to pay for Tommy's in-home care, which cost about two-thirds of her take-home pay. After a series of unreliable sitters, she finally found home-care aide Latoya Davis, who was as good with Tommy as she was.

But with the real-estate market in the pits, she took the house off the market earlier this year. She moved their bedroom downstairs in preparation for her first surgery, to repair her Achilles, and paid Davis overtime to help them both during her recovery.

It wasn't ideal, she conceded, especially at night when Davis wasn't there. Tommy fell one night after slipping in the bathroom.

With a brace on her foot, Linda caught him as he fell, wedging himself between the bathtub and the wall.

The disease progressed and, by spring, Tommy had forgotten how to sit down. When he did get up, he'd walk around the house for four, sometimes five hours at a time. He needed help getting out of bed, too -- something Linda's bad back could not accommodate.

"I probably could've done it a couple of months sooner, but I just wasn't ready," she said, referring to moving him to a nursing home. "Sometimes I think God sends you what you need. If I hadn't physically gone to hell, I'd might still be trying to make it work at home."

During his first several weeks at the veterans care center, Linda visited Tommy before and after work. Most days she took her lunch hour from Lewis-Gale Medical Center to drive over and feed him.

People whisperer

Charge nurse Jessica Nichols said family members of other patients were "mesmerized" by Linda's ability to manage Tommy at home for as long as she had. "She taught us her tricks," Nichols said, adding that Linda typically noticed changes in Tommy's behavior before the staff did.

Linda cringed when Tommy fell twice during his first week there. But she worked with staffers to develop a timing plan for his medications and a regimen that called for an aide to be present whenever he got up or down.

She wasn't sure Tommy recognized her during her visits, although one time he lit up when she walked in and pointed her out to the activities director, saying: "There's my wife."

She was a hit with other residents, too. One man told her he was scared because "my daddy's coming to kill me" -- until Linda assured him that she'd locked the doors and he was safe. Another wanted to know if he could follow Linda as she pushed Tommy in a wheelchair through the "wandering garden," an outdoor space for dementia residents.

"I feel like the horse whisperer -- except with people," she joked.

Alone at home at night, she couldn't get used to the silence, sometimes thinking she heard phantom snores from the den where he'd napped.

But two months into his nursing home stay, she made a bitter kind of peace with the arrangement. "I'm 100 percent happy with his care at the nursing home," she said in July. "But I'm 110 percent sure I'd rather have him at home."

No bad memories

As he entered the last phase of the neurodegenerative brain disease that would take his life, Tommy Rhodes began to have trouble swallowing. One night, as his wife spoon-fed his pureed lasagna and garlic bread, he pushed her spoon away and said, "Get that damn thing outta here."

Linda smiled, waited a few seconds and offered the spoonful again. He ate. The ritual repeated itself until the food was gone, then Linda wiped his mouth with his bib.

For several weeks this summer, Linda recovered from her second surgery, a knee-replacement operation, and could not visit Tommy at all. It was the longest period of time in their marriage that they had been apart.

She had long worried that when her husband died she would only be able to remember the care-giving catastrophes that encompassed the last seven years of their life together-- the sleepless nights, the bathing and toileting disasters, the time he got kicked out of the Adult Care Center for kicking another patient and Linda, all teary and exasperated, asked him: "Now what are we gonna do?"

But during her month recuperating from the knee replacement, she said she enjoyed looking back on their life together: the way he always sat by her at large family gatherings, the way he surprised her when she came back from a beach trip with the kids by hiding behind the door.

"I can honestly say that, before this, I don't have a bad memory of Tommy and I together. Not one."

'Remember him this way'

Things normalized for most of the fall, with Linda stopping by the care center to feed Tommy before and after work.

By mid-December, though, his brain had begun its final shutdown.

"The nurse asked me this week if I would consider a feeding tube," Linda wrote in an e-mail Wednesday. "No, no, no."

She related a recent exchange she'd had a few weeks earlier, when after feeding Tommy, he took her hand and with great concentration put it to his face, rubbed his cheeks and kissed her fingers. For fleeting moments, she knew, her man was still in there.

"He was really struggling [to breathe] at the end," said her daughter-in-law Beth Rhodes, who offered to sit with her in his final days. But Linda wanted to handle it alone, with the help of the center's staff and morphine to ease her husband's pain. Their three children and eight grandchildren came by on Christmas Eve to say goodbye.

Tommy Rhodes died on Christmas Day with his wife at his side. He was 70.

On her Facebook page, Linda posted a picture of her husband from earlier times, his baby blues twinkling not unlike the first time she glimpsed him, in his 20s, driving down Williamson Road. "Remember him this way," she wrote.

"Finally, after almost eight years, my beloved is at peace," she added.

Linda Rhodes will host a celebration of Tommy's life from 4:30 to 6:30 p.m. Tuesday, on what would have been Tommy's 71st birthday, at Friendship Retirement Community's Residents Center.

Beth Macy, a fellow in the Nieman Foundation for Journalism at Harvard, is on a yearlong leave from her job as The Roanoke Times' families beat reporter. Her first story on Linda and Tommy Rhodes can be found at blogs.roanoke.com/ageofuncertainty/caring_for_tommy

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