Caregiver grief includes feelings of relief, guilt, shame

03/04/2012 12:00 AM

06/01/2012 4:45 PM

A heart-shaped silver balloon floats in a corner of the small bedroom where Claire Findley died of amyotrophic lateral sclerosis, or ALS, in mid-January, only a week after her family celebrated her 60th birthday.

"For a while, I was in shock," said her husband, Luther Findley, 56, a contractor and a person of faith. "It's starting to sink in that she's not coming back. Not now, anyway. And not to this house."

In some ways, the financial aspects of life without his wife of 21 years are the easy part of letting her go. Bank of America has given him until April 30 to leave the cozy Fair Oaks house that the Findleys lost to foreclosure last year after they were left deeply in debt by her illness and his unemployment. In December, the bank granted the Findleys a temporary reprieve from eviction, allowing Claire to die in her home.

But for Luther, losing his wife is much more complex.

"Taking care of Claire became my dad's full-time job," said his daughter, Autumn Sharp, who is 30 and a teacher. "It's all he did. He hardly even slept. When she died, he lost his wife and his job at the same time."

For Luther and other people who have cared for loved ones during a long-term illness, the impact of death can be especially difficult. Some experts believe long-term caregivers experience a form of post-traumatic stress disorder, unspooling the years of intense caregiving again and again in dreams and flashbacks as they process their grief.

"It's not only the loss of that person but the loss of what their life has been about," said Nancy Wakefield, patient care manager for the ALS Association of Greater Sacramento. "It's hard to let go of what they've been through."

Experts call what he went through "caregiver grief," the emotional toll exacted by the ongoing series of small and large losses that family caregivers experience during a loved one's illness.

In a sense, every life event is a new occasion for the loss of what might have been had not illness changed the caregiver and patient so irrevocably. Every new sign of deterioration, every new symptom, signals a fresh loss of hope.

"What we can do is recognize that this will happen," said Suzanne Mintz, chief executive officer and co-founder of the National Family Caregivers Association. "It's not out of the blue. Understanding caregiver grief is important. I don't think you can shield yourself from it."

Like Luther, the 65 million family caregivers in this country typically deal with job loss and economic pressures on top of the physical and emotional burdens of caregiving, according to AARP research.

Almost 70 percent of them, again like Luther, experience clinical levels of depression from their ongoing process of grief.

And caregiving for people with ALS, a paralyzing degenerative disease, is especially intense.

"With most other diseases, there's not the level of care that Luther provided for Claire," said Amy Sugimoto, the local ALS association's executive director. "If someone with ALS has an itch, the caregiver has to scratch it. You literally have to do everything for patients who have lost the ability to move but still have the ability to feel."

ALS caregivers watch while their loved ones die by slow degrees – and afterward, they're left to wrestle not just with sadness but also with relief, guilt and regret.

"Long-term caregivers feel relief when their loved one dies, and then they're ashamed of it," Mintz said. "But they shouldn't feel guilt or shame. It's perfectly normal."

The dreams slip away

For Luther, the grieving began with Claire's 2007 ALS diagnosis, which came several years after she began experiencing weakness in her hands and arms. Surgery hadn't worked: She still couldn't open prescription bottles at work as a certified nursing assistant, and she was growing weaker.

"From the initial diagnosis, I was having to deal with the prospect of losing my spouse while taking care of her and losing my job and losing all her dreams for the future," he said.

He reluctantly admitted feeling relief that Claire's suffering was over – and that her passing had freed him to reconnect with life.

"Now it's just a matter of dealing with the reality of it," he said. "I had to try and keep a brave face and be positive for Claire. But I've been mourning for so long. I just feel wrung out from crying and grieving."

Early in his wife's illness, as she lost coordination and strength in her hands, the family adapted.

She could still drive her little Volkswagen if the Findleys' son, Forrest, then in high school, shifted for her while she steered. And she could still look pretty if Luther fixed her hair and makeup.

"She could still get out, and she wanted to," Sharp said. "She wanted to go to church with my dad. But he had to learn to do the girl stuff for her. That was one of the first big things."

Luther, who had been a partner in a small construction company specializing in countertop installation, lost his job late in 2007. The economy was beginning to sour. And worse, for Claire to maintain her state medical benefits, the Findleys needed to maintain a poverty level income. And so began their downward financial cycle into bankruptcy and foreclosure.

Sitting in the waiting room during one of his wife's medical appointments in 2008, Luther took a magazine quiz on depression and learned that he had seven of 10 symptoms.

"Sometimes, it would be 3 in the afternoon, and I'd still be in my pajamas," he said. "I hadn't even had breakfast yet. I was so focused on taking care of Claire.

"But the hardest part for me was the sleep deprivation. I'd start to go to sleep, and Claire would wake me to help her. Then I'd lie awake for hours. I'd get two or three hours of sleep a night."

A doctor prescribed sleeping pills as well as antidepressants, he said, but he hesitated to use the sleep aids at all and took the antidepressants for only a short time. Instead, he arranged respite care with friends from their church, Carmichael Seventh-day Adventist, and found common ground in ALS support groups.

A rewritten life

Faith sustained the couple as Claire grew weaker, he said, and faith sustained them through the summer and fall when sheriff's deputies posted eviction notices on their door. They were last able to make mortgage payments early in 2008.

"We feel blessed to stay in the house as long as we have," said Luther. "It was a miracle and a blessing that they put a hold on the eviction."

Toward the end, when Claire was unable to move anything but one thumb, Luther bathed her and helped her with the bedpan. He carried her in his arms. He dressed her, suctioned her secretions and fed her through her feeding tube.

"It helped me see my dad in a new light," Sharp said. "He and Claire had been on the wrong path when they met, but they came together and found God together.

"Seeing this at the end of their relationship and how much he sacrificed for her, it was so touching."

She brought a shiny bouquet of balloons for Claire on her birthday. A relative had found a long-misplaced videotape of Claire and Luther's 1990 wedding, and the family watched it together, gathered at Claire's bedside.

There was Claire as a bride, healthy and happy, smiling, young and untouched by the illness that would kill her.

A week after the birthday party, she was gone. Her suffering was over. And Luther was thrust into what his pastor, Keith Jacobson, calls a rewritten life.

He felt tremendous sorrow, along with new freedom.

Now Luther is considering work offers – specifically, with a charity that builds schools, clinics and churches overseas. This month he and Forrest, now 21, plan to travel to Nicaragua on a building mission with other volunteers from church.

In the Fair Oaks house, the hospital bed is gone. So is the machine that assisted Claire's breathing, the suctioning device and the stand where her intravenous bag used to hang. And so is the cot where Luther slept every night for five years, positioned beside Claire's bed so he could wake the moment she needed him.

But her clothes still hang in the closet. And mementos from their life together – the pretty china she collected; the big painting that Luther found at a yard sale of Yosemite, where they honeymooned; pictures of Claire at Autumn's 2009 wedding – are all over the house.

In the coming weeks, with the help of family members and friends from church, Luther will face the task of sorting through all of it, downsizing drastically so he can move into his mother's nearby house, clearing out the memories of the life he and Claire made together.

But not yet.

"I start going through her things, and I just can't do it," he said.

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