We are not alone. We are never truly alone. In the contours between the old life and the new, there are signposts that connect the journey. These bridges come in all forms and at every plane of existence, from physical to spiritual. They are the friends who comfort us or give respite, the leaps of faith made solid, the everyday miracles that pull us out of despair. There are supports everywhere, waiting to be recognized and accepted.
Dealing with issues at the end of life, however, caregivers feel very alone. Decisions about life support and questions about the meaning of suffering permeate the everyday tasks and bring caregivers to a new threshold. They become members of the invisible fellowship of those who bear the mark of pain, as Albert Schweitzer called those who know anguish but find friendship in common wounds. It is magical to discover, one-on-one or in a group, that others understand. That knowledge alone can carry us over troubled waters. It also can mean the difference between dysfunction and coping, for commonalty frees us from the desolation we fear only we have known.
Traditional Family and Cultural Supports
We want to believe there is an identifiable solution to every problem, that all we need is to hook up to some toll-free number. Yet what caregivers need most are support and validation, and the best all who follow. Caregiving becomes a rite of passage, a redemptive crossroads to larger source is others who can empathize. We heal by sharing experiences, which builds a bridge for life.
Quality of life is the bottom line in caregiving, but it cannot exist in a vacuum. Family bonds are essential to the wellness of all concerned, and are the first line of defense in the battle against loneliness and frustration. Despite suggestions to the contrary, there is good news: Donna Wagner, director of gerontology at Towson University in Maryland, observes that even though outside help may be needed with long-term care, "the evidence is not so much that we have a social problem, but that we have a tenacious and flexible family structure that works no matter what."
Need can draw out the best in families. "Caregiving has really just become my way of life," says Ameta, forty-four, who can barely remember when her mother, Callie, took care of her. Ten years ago Callie had an aneurysm, which hospitalized her for three months; at the same time, Ameta's father had leukemia. She went to her parents' home every day to cook meals, give medicines, and help with her mother's physical therapy. Then a year later Callie had a hip replacement because of osteoporosis and was in a wheelchair. One Sunday Ameta went by on her way to church to give them some medicines. "Dad was sitting in his recliner asleep, never to wake up again on this earth. This is when it all really began."
Blessed with an unusual capacity for loyalty, Ameta's fifteen-year-old son moved in to take care of his grandmother while Ameta couldn't be there; a year later she and her twelve-year-old daughter moved in as well. What they didn't know was that the aneurysm was a prelude to Alzheimer's. Ameta was still trying to make Callie do everything right, correcting her constantly and upsetting her. Still, Ameta and her children became a natural caregiving team: Ameta's son even fixed his grandmother's hair for church as well as she did.
Ameta has been grateful for the opportunity to take care of Callie, whom she cherishes. A few years ago Ameta remarried; they moved a short distance away. She visited at least three times a day to take care of everything and had Meals on Wheels deliver lunch daily. Her mother still phoned three dozen times a day, having lost all sense of time. A year ago, Callie became combative and incontinent, was falling a lot, and had to be lifted and changed. Even so, Ameta's son and his new wife wanted to move in and take care of Callie, as did her daughter and new son-in-law. Ameta's new husband wanted Callie to move in with them. But she had to be placed in a nursing home, where she climbed over the bed rail and fell, breaking her hip into four pieces. She also has had several strokes and her vision is declining.
Yet she knows Ameta's voice. Some days she is sweet, some days cranky and blaming every bad thing on her daughter. But if Ameta starts to sing an old gospel song, Callie doesn't miss a word. She can still quote scripture and say full prayers. "My husband says that is because that's where her spirit is, even though her mind may be messed up. You have to just love them with all your heart, be as patient as you can, and take it a step at a time."
Although every culture places value on taking care of elders, their means may be submerged by the mainstream. Some cultures maintain their family traditions more than others. For example, among African Americans in the past, says Dr. Peggye Dilworth-Anderson, professor of human development and family studies at the University of North Carolina at Greensboro, there was one primary caregiver in most families. "But in families where you have increased poverty, economic uncertainty, and multiple needy generations instead of one, we may see multiple primaries. In the historical development of the black family, during times when it looked like they were not going to make it, they did, because of adaptive strategies. Everyone looked out for each other. The culture had enough flexibility that kin and nonkin could serve in caregiving roles." Even though today black women suffer more than the general population from poor health and finances, Dilworth-Anderson's research has found that black caregivers tend to experience fewer feelings of burden and depression: one positive outcome of caregiving is the value of filial piety, the need to support the elderly. "When people can do for their parents the way they should, it's an uplifting experience. If you adhere to the traditional ideology-and parent care is traditional-the ability to do that raises a person's sense of well-being."
In primitive societies, there were mourning rituals and social supports that helped restore harmony to both the individual and the tribe. In modern times, despite cultural differences, we increasingly turn in our grief and anxiety to groups grown not out of tradition but out of immediacy. In the past twenty years, self-help has flourished as people search for connection and resolution. When friends abandon us out of fear of contagion or because they haven't the capacity to hold another's suffering, we look for others with similar fears and hopes. We want to know that we are real, that what we are doing matters. Sharing stories becomes a modern-day ritual, with all the wisdom and solace of ancient lore. Something profoundly surprising also happens: when strangers reach out to strangers, they create family.
Caregivers actually rely less on health care professionals for coping strategies than on informal networks, including religious congregations. Today, sponsored by hospitals, social service agencies, and health associations, there are groups for most medical conditions, havens for resources, referrals, and restitution for a mobile society whose family and community links know more uprooting than grounding. "The fact that these groups are mushrooming... in itself is a clue about the magnitude of difficulties that families and patients face with illnesses that entail long-term declines," writes Marilyn Webb in The Good Death.
For many, these circles of support are simply a place to begin questioning. "People first come to groups looking for answers, to solutions for their problems," says Rich, who, while he was caring for his mother, attended a flurry of them and now leads one weekly. "After a while, though, the reason for the support group is the support. We don't have pat answers because each case is unique, but we help people take the road that works for them."
Rich says the sessions are a safe place to explore feelings. At first the groups gave him back laughter, a precious commodity he had all but lost in the illogic and frustration of crises. He felt like Sisyphus, endlessly pushing a boulder up a hill. But Rich discovered that within those labors something more enduring was being accomplished: a chance to contemplate what his parents gave him. Listening to the troubles of group members has convinced him that society does not value the elderly-the older you get, it seems, the less you count. "Caring for a parent is not something you would ever wish on anybody, but we all have something in us of that universal love. You get this opportunity to do things for them, and while you're doing them it's hell for you because it's a total disruption in your life. And then you realize that's what life is all about, this helping. There isn't anything else."
Doctors, social workers, psychologists can't be all things to all people all the time. Sharing your feelings, venting outrage with others who will not criticize but instead help you move forward, grows a sense of closeness few professional relationships can equal. From this consolation more confident and intelligent care flows forth to the loved one. And the attention is returned to the caregiver in even greater measure because we discover we are not alone.
Until recent times, an increasingly frail elder had two options: to remain at home with family or to go into a hospital or nursing home. In response to a mushrooming demand for pragmatic family supports, there has been prodigious growth in such new industries as adult day care, hospice, elder law, assisted-living housing, care management counseling, workplace elder care benefits, and home health care. There are also psychiatric social workers, dietitians, podiatrists, continence advisers, physical therapists, and wound nurses who commonly interact with caregivers. Today it is not only about choices; it is also about honoring life. So when family reinforcements aren't available, the professionals provide surrogate support.
Robert's mother, Elvira, married at age sixteen. Because there was only one set of relatives she was close to, the stage was set for isolation after her husband passed away twenty years ago. She continued to work as a graphic artist but didn't drive, so Robert became chauffeur. After retiring, she spent her days window shopping with her sister, getting her hair styled every week, maintaining her finances and home. More than ten years ago, however, Robert noticed some subtle but persistent oddities, such as wanting him to oversee her checking account and throwing keys at bank personnel because she didn't want her safety deposit box anymore. He took her to a hospital for a geriatric evaluation, upon which she was diagnosed with advanced dementia. She was sixty-eight; Robert was forty-seven.
Even though he worked full time and was married, Robert visited his mother daily, fed the dog, and took care of bills. One time he found Elvira crying over the mail, saying, "I'm getting worse, I'm getting worse." Everything seemed to be spiraling out of control until a hospital geriatrician visited and made suggestions to improve the safety of her home, like a holding bar in the shower bathtub. Robert met with her weekly to discuss which agencies offered custodial home care and to validate his concerns. These talks started him on the right track, which has continued to this day in the form of smart counsel from caring professionals.
In order to protect his mother's assets, Robert sought conservatorship. He also hired trained caregivers for custodial care. Yet the aggravations continued. One day Elvira tried to push an aide down the stairs. Then there was combativeness, incontinence, and feces around the house. Time came for Robert to place her in a nursing home nearby, for $4,000 a month. On the attorney's advice, Robert sold his mother's home and put her cash assets into annuities and certificates of deposit. Even though this arrangement has entailed a lot of record-keeping and reporting, he believes the advice has helped keep Elvira comfortable and prolong her life.
For all of Robert's attentive care, however, his stress built up to near explosion. He fell prey to muscle spasms around the heart and severe tension headaches; then his union went on strike. His doctor put him on tranquilizers to control anxiety because he felt he was deteriorating along with his mother.