In this together

In prime of life, local man steps up into role of caregiver

Updated: Wednesday, March 29, 2006 7:09 AM PST

Boundless, quick to laugh and a little on the edge, always ready for fun. Not a watered down thought or feeling among them. That was how Bruce and Denise Sutherland were.

Always ready and willing to hop on a motorcycle and take off headlong against a torrent of wind on highways headed east to the foothills. A pair to be reckoned with on the tennis court, the twirling of a racket in their tanned hands, the smack of a ball against a hard court.

Proud parents of Cliff and Shawna, who honestly inherited their roguish good looks and fearlessness.

But a cold night in November 2002 changed all they had known. Denise woke up late in the night to let the dogs outside and never made it back to bed.

She went to the bathroom, her head spinning. Part of her brain was being attacked by immune cells that normally fight cancer. She called out to Bruce still asleep in bed. That was the first sign that something was wrong.

Changing roles

In one night, Bruce went from breadwinner and head of household to caregiver. He joins millions of male caregivers, who now make up 39 percent of the country's 44 million citizens caring for a loved one, according to a 2004 study put out by the National Caregiving Alliance and AARP.

But it's not easy.

Now Denise is confined to a wheelchair. She can move the fingers of her right hand ever so slightly. She sees double most of the time. Has a constant migraine. Speaks in forced sputters, one syllable at a time.

Bruce feeds her, washes her hair and keeps her entertained throughout the day, working only a few hours at Landmark Produce Sales, a company he started two decades ago.

Men taking care of women is not uncommon, says Scott Haltzman, a psychiatrist and clinical assistant professor at Brown University in Rhode Island. Haltzman counsels male caregivers and has found in his 17 years in the field that most men are willing to assume responsibility for the care of a loved one.

"They often feel this new role helps give some tangible form to what they're feeling," Haltzman said, adding that caregiving can also be emotionally gratifying. "Men want to feel like heroes."

That doesn't mean that the process is not without struggles. Feelings of frustration and anger are natural for long-term male caregivers, who work hard but see little physical improvement, Haltzman said. But in the end, most men come to terms with the situation and find a love that has grown stronger by being tested.

For the Sutherlands, once so socially active, Denise's illness has brought with it a kind of solitude. Many of the Sutherlands' friends don't come around as much as they used to. Faces become thin veils shrouding pity, discomfort. They do not know what to say to Denise. Do not know how to take Bruce's jokes.

Despite the long moments of solitude, Bruce says their love has gotten stronger in the past three years. Feelings of resentment at the unseen forces that robbed them of their post-empty nest freedom have given way to an understanding those outside them can only guess at.

Haltzman said long-term illness and caregiving can strengthen relationships, reducing petty arguments and returning couples to the core of what brought them together.

"This is what tests the quality of what it means for us to be human," he added.

For Bruce and Denise, this much is true.

In it together

The pair is sitting together in the living room, when Denise begins to speak.

"You're my hero," Denise says with a tremendous effort saved for really important comments.

"She tells me that quite often, which is really sweet. Thanks, babe," Bruce says, leaning in to his wife from the chair by her recliner for a kiss.

They met in 1978, when a friend set Denise up on a blind date with Bruce's roommate. Before long, Bruce and Denise were a couple.

May 10, 1978. The date of their first kiss is etched in Denise's mind. September 1980, their wedding. One year later, Shawna, followed by a pink-skinned Cliff in 1984.

She can remember all these things, but still does not recall the three months she spent at UC Davis three years ago.

It would take Bruce nearly a month after that November night to learn what had happened to Denise as he slept. It was Paraneoplastic Cerebellar Degeneration — a long way to say that cancer-fighting cells in Denise's body had turned their attack to her cerebellum.

Forces in her brain stem had been working against her for years, causing the telltale headaches that she once thought were stress-induced. It all caught up with her that night she crumpled to the bathroom floor.

After two rounds of emergency room treatment, Bruce took his wife to UC Davis Medical Center. During a months-long battery of tests, Denise went from bad to worse. She was in an out of consciousness and wound up in a coma. At one point, she screamed non-stop for days. Nothing could be done to calm her.

"It was breaking my heart," Bruce said recalling the sound of her screams tearing through the hallway.

Still he sat at her bedside, her hand in his, until she came around. When she awoke, she could not speak. Immediately, Bruce came up with an alternate form of communication. One eye blink for yes. Two blinks for no.

Was she tired? Blink. Was she in pain? Blink.

It was a terrible time for the family, though today all Denise can say about the harrowing three months is "I don't remember."

The aftermath

By the time Denise checked out of UC Davis, she'd spent three months in bed and lost 35 pounds. It was not until Bruce got her home that she began to regain, in small pieces, some of what she'd lost.

But a relapse in 2004 brought her to where she is today.

Now, when it's time for bed, Bruce pulls Denise from the soft recliner that has conformed to her shape and gently puts her into the wheelchair. His biceps flex as he hefts her up against his body, his knees buckle as he braces himself against the weight, though Denise's slight frame is all of just 88 pounds.

An automated chair lift carries her upstairs to their bedroom. Her rumpled body in place, and tucked in for safety, she makes her ascent. When the chair lift hits the second stair, Denise passes by a photograph on the wall.

She cannot turn her head to see the picture, a shot of a cheerful Bruce and Denise smiling 10 years ago at an anonymous photographer.

But he can.

"I think of this picture every day when I take her upstairs," he says. "Yeah, I get kind of ticked off."

Reminders of the old Sutherlands are everywhere. Never has a family been more photographed or videotaped, Bruce admits.

It's a family tradition to catch everything on film, everything from first steps and Christmases to camping trips and weddings. Recently, Shawna made a DVD of photos and movie clips commemorating both her parents' 25 anniversary and Bruce's 50th birthday.

On a recent afternoon, the Sutherlands, along with Denise's parents, Mike and Julie Aloi, looked on as a darkly beautiful Denise, clad in jeans, smiled up at the camera. Contemporary songs tug heartstrings, eliciting a sniff from an otherwise quiet Julie.

Denise sits limp in her wheelchair as the images flash.

Her body may be compromised, but her cognition is largely intact. She has the same thoughts, feelings and desires she had when life was normal. Now, at 47, when she should have been enjoying her marriage and relative youth, does she feel trapped in her uncooperative, 88-pound body?

"Yeah," she says with an aspirate puff and a nod, as her tongue flicks out and swipes across her bottom lip. The gesture is one of the more benign side effects of a brain being slowly weakened by overproduction of anti-yo, the antibody in women designed to kill tumors.

"You were always active," he said looking to Denise with a weary smile before busting out with a joke. "I know you miss giving me back rubs."

No, she shakes her head with a smile.

Miracles do exist

In the past three years, life has gone on around them.

Bruce goes in to work a few hours each day, leaving Mike and Julie to watch over their daughter.

Now 24, Shawna is working on an acting career in Los Angeles. A 21-year-old Cliff, is making being stationed with the Navy in Italy and is taking his wife and 3-year-old daughter Tarryn with him.

Regular calls and monthly visits from Shawna and Cliff punctuate the quiet routine. Mike and Julie come nearly every day to play cards and massage her legs, her feet and arms. With a little help from a card-holding contraption, a lá Bruce, Denise can still clean up in a game of 31.

"Miracles Do Exist," reads a fading yellow newspaper headline taped to the fridge.

For Mike, that would mean seeing his daughter walk again.

"I told her I'm not leaving this earth until she's walking again," he says with a smile. "I'm not going anywhere."

Bruce has more modest hopes. Like Denise feeding herself or being able to scratch the occasional nose itch.

As for Denise, what she misses most is holding tightly onto a wiggling Tarryn, who may grow up never remembering the feel of her grandmother's hug.

The Sutherlands do not know what the future will bring. There are hopes and dreams, but more importantly, there is an appreciation for the love and laughter they still share.

"She could still outlive me," Bruce says, looking down at his reclining wife before adding. "Maybe I'd better start exercising."

Contact reporter Sara Cardine at sarac@lodinews.com.

Recommended reading

"Men As Caregivers"
Edited by Betty J. Kramer and Edward H. Thompson Jr.
This book features articles from experts in gerontology, social work, psychology and sociology collected by two experienced researchers in the topic of male caregiving. Special consideration is given to gay male caregivers of partners with AIDS, men who care for a family member with dementia, fathers of adult children with disabilities, spousal care of women with cancer and sons caring for their parents.

First published: Wednesday, March 29, 2006