Support for Spousal Caregivers

The Mail Tribune
by Bill Kettler

When Meredith Ayer married Bob Pech back in 1973, she never imagined she would have to put on his socks every day - or help him to the bathroom.

Bob, 63, was diagnosed with mulitple sclerosis in 1995.  By 2002 he'd lost the use of his legs.  Meredith,  61,  has been his primary caregiver, watching over him and helping him with the ordinary activities of daily living that the rest of us do without thinking.  She said caring for a spouse with a long-term illness is different from caring for an aging parent, and she should know - she's also caring for her mother.


When a parent needs care, there's a sense that it's part of the natural order of things, but "you don't expect to take care of a spouse in midlife," she said while reflecting on the challenges of providing care for her husband since she was in her 40s.

"The basic relationship with a parent is different than with a spouse," she said.  "You're never that intimately involved with your parents. You get irritated with a spouse in a way that you'd never get irritated with your mother."

As a caregiver spouse, Meredith has plenty of company, but it's hard to say how many people have similar roles because no single agency or organization keeps track of them all.  Some care for a husband or wife struggling with dementia; others help their partner cope with a disabling disease such as MS.  One Wisconsin study determined that nearly half (48 percent) of all primary care for elderly or infirm people is provided by a spouse.

Long-term illnes changes the basic dynamic of a marriage, said Johann Karr of the Well Spouse Association, a New Jersey nonprofit organization that provides support for men and women who are caring for a partner.  "You get married with a set of expectations," Karr said. "Illness robs you of the dreams you have while you have to adjust to caring for your spouse."

Pech wants to start a support group of the Well Spouse Association here in Southern Oregon, and has scheduled an organizing meeting at 4 p.m., Jan. 18, at Trinity Episcopal Church in Ashland.  Karr said talking with others in similar circumstances is one of the best ways to come to terms with the anger, frustration, loneliness and sadness that emerge when a partner gets sick.

"If you keep something bottled up inside you it festers," Karr explained.  "If you feel you're the only person enduring this, you get a sense of isolation.  When you find out others have found a way to handle it, it gives you hope."

Bob Pech has maintained a positive attitude about life despite his illness.  He's active in his church and the local MS support group.  He plays with his young grandchildren, and they enjoy riding around with him on his wheelchair.  "My life is full and rich," he said.  "My days are full and satisfying.  I'm just happy to be here." 

He's encouraging his wife to organize the new group.  "It's great for partners to have a support group," he said.  "I think they'll find it strengthening to be with each other."

Chronic illness alters every aspect of a marriage, from the most mundane activities of daily life to the deepest levels of intimacy.  "I looked forward to a life of retirement," said Pech, who left teaching after a 30-year career, "but my life is really dominated by my husband's illness."

Karr said caregiver spouses often feel a profound sense of isolation.  Old friends tend to disappear because they don't know how to act or what to say as time goes on.  "People don't know how to handle illness," she said.  "Sometimes it's easier to back away.  They say I'll call you sometime, but they don't because they're uncomfortable."

"Losing friendships is hard," said Laurie Alpenia of Ashland, who has been caring for her husband, Juanito, since he had a series of strokes two years ago.  "We had a couple of friends, but they don't come around like they did."

Serious illness often limits a partner's ability to travel outside the home, increasing a caregiver's sense of isolation.  Bob Pech can ride in a modified van, but he sleeps in a bed that has been rigged with ropes and pulleys that help him climb in and out.  Sleeping in any other bed wouldn't work.

"We used to go to the coast," his wife said.  "We haven't gone to the coast in years. We used to camp.  We haven't camped in years.  He has so many special needs that we're really grounded," she said.

Spouses often feel angry about the way a partner's illness changes their physical relationship, Karr said.  "A lot of marriage is about physical intimacy.  Many people have a hard time being intimate with someone for whom they are bathing, changing diapers, and for which they give basic daily need care."

Meredith reminds us that caregivers often struggle with accepting the notion that the partner they once had is gone.  "You're connection has been so deep with your spouse for so long, and now so many of those connections are gone," she said.  "There's lots of sadness in losing the person that a partner used to be. The person you trust as a confidant can no longer function in that way. You feel single even though you are married.  A lot of what formerly connected you is gone.  The person becomes more like a brother or sister or even like a child to you. The relationship is changed."

"You're more of a caregiver than a wife," Alpenia says.  "I'm here all night taking care of him.  That's a different dynamic."

Chronic illness can cause feelings of hopelessness.  "You know whatever your spouse has - it isn't going to improve.  It's hard to maintain a positive feeling when there's not much positive coming back to you in a marriage,"  says Pech.   "When you look at what's coming, it's stressful to think of.  It's not like the sun's going to shine and everything's gonna get better again."

"A person with MS is expected to have a normal lifespan.  Twenty years from now, Bob will probably still be here, but he'll be that much worse,"  says Pech.  The stresses on caregivers take a heavy toll.  About 40 percent of the people who are caregivers will die before the person they are taking care of, said Elizabeth Hallett, who organized Ashland Memory Care Center, where caregivers can bring their loved ones who have suffered stroke or dementia to get some time off for themselves.

Hallett said it's critically important to offer support to caregivers because they provide millions of dollars in unpaid care every year.  In Jackson county alone, the value of the care is estimated at $259 million (based on an hourly wage of $10.27)

We have to have support for them," she said, "so they can take care of the person with the disease."

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