All About Multiple Sclerosis

More MS news articles for January 2004

During prolonged illnesses, we often anticipate grief for loved ones

Fri, Jan. 23, 2004
Martha Sheridan
The Dallas Morning News

Judy Cooper's grief is an emotional chameleon, alternating denial, guilt and anger. When it clings heavily, she dwells on her mother, who suffers from Alzheimer's disease. The grief is always there, waiting. It casts a shadow at any time; Cooper has burst into tears at unlikely places, such as the supermarket.

The stages of grief and bereavement are familiar: shock, denial, bargaining, guilt, anger, depression, acceptance. Cooper is dealing with anticipatory grief, a term that will become more familiar as medical knowledge prolongs the fight against death.

People struggling with anticipatory grief may experience all the familiar stages before a loved one dies, with guilt hitting hard. Anticipatory grief differs from grief after death. People share in the terminally ill person's sorrow over past, present and future losses, such as motor skills or mental acuity. The simultaneous grief of the family and patient has emotional trapdoors that challenge family roles and identity, complicating relationships. Families may feel divided when they need each other most.

People who maintain relationships through long illnesses become intimately acquainted with the complexities of anticipatory grief. Cooper, 56, knows her 86-year-old mother, Jewell Grishaver, has had a good life, but who, she asks, can be completely ready for Mom to die? In addition to grieving the future death, a terminal illness creates hundreds of little deaths, says Chris McGonigle, Ph.D., co-author of "Liberating Losses: When Death Brings Relief."

During the six years Alzheimer's disease has been destroying cells in Grishaver's brain, Cooper has felt grief's many colors.

"When I look back on it, I can see that she was going downhill really fast. By 2000, 2001, we were in denial really bad," Cooper says. "I used to get angry with my dad. He would try to reason with her and argue with her, treating her like a wife" even though she was losing her reasoning skills. "I tried to defuse what was going on between my dad and my mom."

In February, Cooper moved her mom to Arden Courts, an assisted-care Alzheimers facility in Richardson, Texas. Caring for Grishaver at home had become overwhelming. One afternoon, Grishaver heard children playing outside and went out alone, anxiously searching for a son who died 40 years ago.

"I think I grieve every day for my mother. Physically, she's still here. Emotionally, she's no longer my mother," Cooper says. "With Alzheimer's patients, their world closes around them. Their circle continues to shrink. She's not capable of being part of a family or being my mother. It's heartbreaking. My mom was the type who was all Mama."

Cooper stands in the doorway of her mother's room at Arden Courts and gestures toward old photographs of Grishaver, which capture a vital mother and businesswoman in her prime.

"She was always big on birthdays, especially mine," Cooper says, "but now she has no idea of the season, of the time of day. Her life is just a big blank." During a recent visit to the facility, Cooper brought colored markers and a picture that her mother seems to enjoy coloring. In the community dining room, Grishaver held a marker over the page, politely looking up when people walked by, and colored the same section repeatedly until Cooper coaxed her to color a different area.

In August, Grishaver's husband of 22 years died. By then, she did not understand the concept of her husband's death.

Anticipatory grief was acute in the 15-year battle with multiple sclerosis McGonigle waged with her husband, Don. He was diagnosed with MS in his 30s; the couple had an 18-month-old boy and 4-year-old girl. "Everything was just starting in our lives - new home, new job," she says. "Everything seemed to be perfect for us. He developed MS and he unfortunately had the kind that was pretty steadily downhill after the first symptom." There were no remissions.

"I look back on those years as a perpetual series of grief episodes. Until he took his last breath, there was always something else to grieve." He could not push the kids in the stroller or teach his daughter to ride a bike. "His beautiful, deep booming voice was gone eventually. There was the loss of sexual potency. There was no area of our lives that wasn't affected by this awful illness."

Her husband died 11 years ago; McGonigle, who lives in Helena, Mont., has not remarried. "I can understand caregivers who say they'd have to have a signed health certificate from God before they'd go into matrimony again," McGonigle says.

There is a difference between anticipatory grief and care-giving, says Donna S. Davenport, Ph.D., author of "Singing Mother Home: A Psychologist's Journey Through Anticipatory Grief." Some caregivers don't face anticipatory grief. "Or if they're the primary caregiver, they may be so exhausted from dealing with moment-to-moment, day-to-day stuff that they don't have the luxury of stepping back and wondering what it will be like when their loved one is gone."

Family members often feel guilty; sometimes they secretly wish that death would pick up the pace. Anger can rush in. People socialized to take on the role of protector, especially men, find they can't fix health problems, she says. Friends and family may feel that they haven't done enough or become angry with doctors and medical staff. Sometimes anger shows itself as general irritability, causing people to respond inappropriately at times.

In response to a question about how to deal with such cascading emotions, Davenport attempts an explanation: Our capacity for love is far greater than our ability to intervene against death, she says. And that creates anguish.

Suffering can create behavior that makes a patient seem difficult to like, much less love. And if a family member was abusive before the illness, it's hard to know whether it's safe to become part of the patient's life again. Sometimes, Davenport says, a terminally ill person is "a jerk who will continue to treat people badly. In that case, family members may be wise to limit their interactions. Forcing yourself to have contact in this situation is not going to do a lot of good."

Talking with medical staff, keeping in touch with family and offering appropriate forms of help can ensure that the patient's needs are met even if it's necessary to keep a physical distance from a "toxic" family member.

In most cases, however, dealing with a patient's difficult behavior is easier when families set aside denial and guilt and try to understand what a seriously ill person is up against. "It's not a selfishness, it's just the reality of having to deal with all the disability and the life compromises that come with an illness like that," McGonigle says. The illness becomes so large in the person's life "there is less and less room to let other family members in."

One woman described dealing with her husband's illness as "almost like a mistress situation," she says. "All of her husband's attention and thought were on this illness that he had to live with every day. That can't help but impact the quality of any relationship, especially an intimate one."

A culture of denial surrounds grief of all types, says Melissa Grove, executive director of Legacy Counseling Center in Dallas. "Grief is not generally accepted. Maybe a little after someone dies, socially you are allowed grief for a brief time. But people want you to snap out of it. So if people are not accepting of grief later, it's certainly not widely acceptable to grieve in anticipation of death."

Still, anticipatory grief is an undeniable emotion, Grove says. "You are grieving for your previous relationship, for the person that used to be." Advancements in AIDS treatment allow people who are HIV-positive a longer quality of life, she says, but families may pull away in an effort to avoid feeling the anticipatory grief.

"There is anxiety about how long the drugs are going to work," she says. "An underlying theme of anticipatory grief is not just death, but the other losses - job, partner, family connections, control of bodily functions, needing to take medications three or four times a day. The feeling of loss of normalcy, of identity."

Special occasions, such as birthdays and holidays, can turn sour under the added pressure of trying to make them perfect because they could be the last.

For Davenport, Christmas 1998 was the most difficult holiday. Davenport, associate professor of counseling psychology at Texas A&M University, often drove the 173 miles from Bryan to the Dallas retirement village where her mother, Dixie, died in September, 1999.

Christmas 1998 was to be the first time the whole family would be together since Davenport's father died in 1994. An ice storm hit, scattering the family, increasing their stress and delaying travel plans. "I tried not to be too annoyed that the weather had cheated me out of a whole day of family fun" on Christmas Eve, Davenport writes.

On Christmas Day, "I have strong memories of my mother smiling, but growing quieter and quieter as the day went on," she writes. "It felt to me that, like a rubber band that has been stretched too many times, her resiliency was almost worn out. Reassurances I gave myself felt hollow, and although I tried to dismiss as overly dramatic my inner certainty that this would be her last Christmas, I could not shake the undercurrent of sadness that followed me all day."

The anticipatory grief that clings to Cooper while Alzheimer's erodes her mother's brain differs from the experience with a sudden death, says Kay Paggi of Richardson, a geriatric care manager and licensed professional counselor (

If a loved one dies in a fatal car accident, she says, "I'm blind-sided. I'm raw, enraged, furious, a whole gamut of emotions," she says. "But if a client is slowly declining, knowing that they may die, I may be emotionally involved and shed a lot of tears. There's a resolution there, a time to prepare yourself."

Time to prepare does not necessarily assuage grief. In Alzheimers cases, Paggi has had to tell families: "That looks like your dad, but that's definitely not your dad. The grief is real. He has already died, his body just didn't lay down."

People don't want to deal with death and loss, says Grove. Many don't want to see death as a part of life. "People are expected to be happy all the time. I think there is a made-for-TV-movie perception about life," she says. "But real life is not that clean, not that cut-and-dried."

© Copyright 2004, The Dallas Morning News