Support for Spousal Caregivers

from CaringToday.com/ Caregiver Profiles
January/February 2007 issue

Rebecca and David Otterness met while students at Gustavus Adolphus College in St. Peter, Minnesota. She was studying to be a nurse, he to be a minister. They'd go on long strolls around the lake, but Rebecca noticed that David had difficulty walking. "I just thought he wasn't in shape," she recalls. A physician offered a more serious reason: multiple sclerosis.

œDavid told me the truth right away," says Rebecca, now 59. "He said I was free to leave him. But we'd both promised God we would marry." As an Evangelical Lutheran, she told David that leaving "isn't who I am."

Rebecca searched through her textbooks, but they had little on MS, just two paragraphs explaining that the symptoms come and go and the person could remain ambulatory for 20 years. "I thought, I can handle this for twenty years," she says. "In my family, we believe God gives us the strength for what He calls on us to do.

She and David married in 1969. A year later, he was ordained and became the pastor of a small parish. But he had to use a cane, and Rebecca thinks the congregation saw chronic illness as a "sign of sin." So they moved to a different parish, along with their baby son, Peter. But David's balance was so shaky that every time he gave a sermon, she says, "I'd sit in the pew holding my breath, wondering if he would fall." He never did.

A physician told her she'd know when David got worse because there'd be a "drastic change." Instead, the changes were so gradual she says she couldn't pinpoint their occurrence. The couple later found out David had progressive MS, "but doctors didn't have a clue about how to treat it" aside from prescribing vitamins and hormone stimulants. Rebecca found her nursing training useful, noting that "they didn't have to teach me how to give shots.

In a few years, David had to stop working. "The congregation said his disability made it impossible for him to be the minister they needed." So he and Rebecca moved back to St. Peter, where her family lived and she could find work as a public-health nurse. Under the federal Disability Income Program, David was in a three-month program to train as a hospital chaplain, but his health deteriorated and he was never able to serve in that capacity.

œThe literature said MS doesn't affect the brain or personality, but I saw cognitive changes and difficulties in problem solving," Rebecca says. There also were, she adds frankly, "communication conflicts." She'd tell him something and he'd say she hadn't.

Finances were becoming an additional strain. David was getting Social Security and Church Disability but, Rebecca explains, "I learned to be very frugal." Then, in 1980, she got a job on a resource team at Immanuel-St. Joseph's Hospital/Mayo Health System, in nearby Mankato, where she now works in obstetrics. ("It's a great fit for me," she says. "If I worked with families who were sick, I'd burn out.") She worked an early shift so she could be home by the time Peter got back from school. She'd set David up in a recliner with a tray of food, and her mother came each day to help him.

Although it was increasingly difficult for him to move from room to room, David refused to use his walker. "He was angry and frustrated. It was a hard time." And even after he fell and broke his hip in 1984, he resisted using a wheelchair.

œI had to step outside my normal self and be hard," Rebecca says. "I'd yell at him, ˜Safety is a priority! If you fall, I'll have to get you up. That will hurt my back and I won't be able to help you.' When he did fall, I'd stand over him and say, ˜You'll have to figure out a way to get up.'" She'd leave for about five or ten minutes, then come back to a David sheepishly willing to let her help him into the wheelchair. "It wasn't comfortable for me to act that way, but he needed me to be firm.

In the past few years, David, now 62, has developed severe problems with chewing and swallowing, so Rebecca must puree everything. "That takes more out of me than anything else." The liquids have to be thickened, but since David now has diabetes, he can't have carbohydrate thickeners. Rebecca found a non-carb gel thickener, Hydra-Aid, which they order from California. "I order six one-gallon jugs at a time, that's a six-week supply. With postage, it comes to about $150." Their insurance company refuses to cover it.

With David no longer able to get out of bed or turn over by himself, she tried various lifting mechanisms but couldn't position him properly. Researching online two years ago, she found the Voyager Portable Lift, which is much easier for her to maneuver. It hooks into ceiling tracks she had installed in the bathroom, bedroom and living room at a cost of $6,000. "That's less than a month in the nursing home." Insurance didn't cover the lift, either, but the Minnesota MS Society provided 25 percent of the cost.

The nursing home is sometimes a necessary alternative when Rebecca wants to visit her siblings. She tries to take David and his wheelchair in their ramp-equipped van, but when her niece got married in a mountain meadow last year, the chair would have been impossible. "David knows how important it is for me to go to family things, so he told me to go.

Rebecca managed to find time to get a Master's in Nursing from the University of Minnesota in St. Paul in 1995. It took eight years to complete the program because she could only do it part-time. If her situation were different, she says, she'd use the degree to become a fulltime nurse practitioner or to teach. But, for now, she keeps her limited part-time schedule so she can be with David as much as possible.An aide now comes four mornings a week to bathe, dress, exercise and feed him. "This is a tremendous help to me," Rebecca says, "and wonderful for David's morale," which has remained amazingly good. David even jokes to Rebecca that at least he isn't "wandering in bars.

Still, she's frank about how different loss can be when it's your husband who's disabled, as opposed to a parent. "You lose your partner and the hopes you had, as well as the protection a wife gets. You're a widow with a husband." There's also the frustration of trying to communicate. "I know David loves me and is proud of me, but if I want to know what he's thinking, I have to make up five or six responses and he lets me know which is closest. It's like having a conversation with myself.

For many years, she mourned these losses. "But I got tired of grieving. If life were a balance scale, chronic grief would be on one side with resilience on the other. I needed to look at the resiliency factors that make it possible for me to do all this, so I jotted down my strengths. I ended up with thirty!

The "incredible supportiveness" of her mother and three siblings is high on the list. Her father, who died nine years ago, had been a wonderful male role model for Peter. Her sister Ruth lives in Wyoming; her other sister, Rene, is in Seattle; and her brother, Tom, lives in Salt Lake City. "I know if I call any of them and say I'm at my wit's end, they'll be here the next day. That's is a safety net under this tightrope walk!

Her son and daughter-in-law, Jenny, who live nearby, substitute for Rebecca's mother when she isn't available. Peter even taught Rebecca how to use tools, and she boasts that she can do most of the home maintenance herself, "like staining the porch steps Peter built for us, and painting the house.

Supportive as her family and colleagues are, Rebecca finds there's no substitute for talking to other caregivers. "They understand what you're going through because they're going through it themselves." She exchanges e-mails with a man in Alaska whose wife has MS, whom she found through the Wellspouse Association's Internet bulletin board. They give each other tips, such as how to travel with a disabled spouse.

The "foundation" of her strength, she finds, is her unshakable faith. It sustains David, too. "I've never heard him blame God for his illness," she says. "I think David would tell you that one of the ways God has shown His love was by providing me to take care of him.

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