ALS News and Research
Spousal caregivers face special issues
By LINDA WALLS • CORRESPONDENT • November 28, 2008
They're less likely to identify themselves as caregivers and more likely to die before their chronically ill or disabled spouse, often carrying their stress in silence to protect the feelings of husbands or wives.
"Spousal caregivers are a different animal than regular caregivers," said Johanna Karr, a development and public relations worker for the national Well Spouse Association at its Freehold headquarters.
The marital relationship, finances and child-rearing complicate the issues, noted Richard Anderson, president of the organization, which recently celebrated its 20th anniversary at a Chicago conference. The nonprofit association conducts support groups in 26 states and in an online forum to help spouses dealing with feelings of isolation, anger, guilt, fear and grief.
Anderson, a caregiver for his late wife who had systemic scleroderma during 29 of their 31 years of marriage, said the top two issues for spouses are sex and money.
"The intimacy of the marital relationship makes it different, more emotional in content than other family caregiver relationships," he said. And family finances are threatened. "When the ill person can't work, it's a double whammy. They have extra medical costs but only one income."
Also, the well spouse may be left serving as a "single" parent.
"When you say spousal caregiver, people think of grandpa helping grandma," Karr said, yet studies reveal the largest percentage of the nation's 6 to 8 million spousal caregivers are between 20 and 35 years old - many with children at home.
The number of young spousal caregivers is growing, Anderson added, "because cancer is afflicting younger adults, and because the Iraq War is saving people with brain injuries but leaving them with considerable effects on their cognitive abilities and emotions."
Other debilitating conditions impacting young people include multiple sclerosis, amyotrophic lateral sclerosis, Parkinson's disease, paralysis or brain trauma from accidents and mental illness, Anderson said.
Melanie Holzberg of Asbury Park was 36 and her husband 39 when he received a diagnosis that sent their lives reeling more than 20 years ago. Norman Holzberg had amyotrophic lateral sclerosis (ALS), a fatal neuromuscular disease that paralyzes the body while leaving cognitive functions intact.
Melanie fell into the role of caregiver for her husband as well as for their two children, Shara and Scott, then ages 4 and 8.
The average ALS life span after diagnosis is three-to-five years, but Norman lived on home care for 16 years, including 12 years on a respirator and feeding tube.
"I was working full time," Melanie added, "because somebody needed to have medical insurance." She worked as an audiologist, commuting to New York two hours each way. "That was my life. I was trying support my family," she said.
As Norman's condition worsened, she negotiated with the insurance company to provide round-the-clock nursing care at home. "I negotiated with everyone - the nursing agency, state senators - and it worked," she said.
Initially, she worried about the effect of Norman's illness on their children, especially after their dad was hooked up to a respirator and feeding tube. "I didn't want their friends to be afraid of this "monster' in the house," she said. "As it turned out, it wasn't a problem. His equipment became old to them very soon."
However, some of Melanie's friends stopped visiting. "I guess they were afraid or uncomfortable," she said.
Although he was mostly immobile, Norman remained an active parent as long as he was able, Melanie said. "We managed to read his lips, one word at a time, and he used a computer to communicate." He even coached their son's basketball team at the recreation league in Manalapan, where the family lived for 30 years, writing analyses of the games and words of encouragement for players.
For a while, Melanie attended a support group for families dealing with ALS. "The problem with that was, because of the nature of the disease, every two or three years there would be a turnover of caregivers," she said. "I became the senior member, helping others, but I still needed support, too.
"It's very different being a spousal caregiver," she added. "This is the love of your life, the other half of who you are."
She eventually found Well Spouse Association, began receiving its quarterly newsletter, and helped establish an area support group 12 years ago with Donna McQuade, who serves as facilitator.
Norman died six years ago this month, but Melanie still attends the meetings because "the experience is so far-reaching, and because, through this tragedy, I've met some of the most wonderful people in the world. I can't imagine not having them in my life."
The Monmouth County Well Spouse support group of 25 members meets monthly at the Java Moon Cafe in Manalapan where they enjoy dinner in a private room, allowing members to talk openly and freely, said McQuade, also a spousal caregiver for the past 28 years.
Because spousal caregivers tend to be young, they often get "sandwiched," McQuade said. "Many of us are also in a triple-decker sandwich, caring for children and elderly parents as well as a spouse."
Members make lasting friends, often replacing others lost over the course of dealing with a disability or illness. The loss of old friends "is just a reality of life," McQuade said.
"It's a group no one wants to belong to," she quipped. "But we just keep plugging, and a positive attitude is a must. You get angry at the disease, not your husband or wife. Some people use humor, even black humor, but they're still careful to be respectful of their spouse."
The aim of the support group is to encourage spousal caregivers to interact, share stories and move forward to a "new normal," McQuade said. "This experience grounds you; you realize what's important."
Support group members come from as far away as Egg Harbor and Barnegat, Wayne and Jackson.
Paulette Caputo has been traveling to the Manalapan meeting from Milltown, East Brunswick, for the past 15 months. Her husband, Ted, was an electrical engineer until multiple sclerosis took away his ability to walk, or work, 20 years ago.
Also, he was hospitalized for three weeks with burns to approximately one-third of his body a few years ago after attempting to pick up a pot of hot water, Paulette said.
The couple have two children, Regina, 15, and Nick, a senior at the College of New Jersey. Paulette is a nurse at a juvenile correctional facility, sometimes working two double shifts on weekends.
Still, she considers herself fortunate, she said. Ted is fairly independent and can drive, using hand controls, and manages most of his own care at home. "I usually come out of the support group meetings feeling better; a lot of people have it worse than I do," she said.
Paulette said she was aware of Ted's diagnosis before they married. "We'd been going out two years, and I struggled with the idea for a while, but I realized I loved him and wanted to live my life with him," she said.