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Caregiving Support Strategies

YOU ARE NOT ALONE

by Beth Witrogen McLeod

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."

Support Groups

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.

Professional Support

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.

What brought me back from this ordeal is the fact that I was in constant communication with the professionals. I didn’t try anything on my own. Once I knew what I was dealing with, I accumulated as much information as possible—reading, a group therapy session. It’s been stressful and time-consuming, but the experience I have in this field—financial, medical, and legal—is an accomplishment. I know whom to call, where to go, what questions to ask. What causes more stress, though, is that when she passes on, it’s forever. I made sure I told her I loved her before and after she became ill. My mom made me realize to take my life seriously—don’t waste a minute. Smart lady.

 

Day Care and Care Management

Adult day care centers are becoming one of the most popular forms of support for caregiving families. For an average of $50 a day, they offer health and therapeutic services and social activities for people with functional or cognitive impairments and keep many elders living in the community instead of being institutionalized.
     "Day care makes a lot of things possible," says one caregiver with two toddlers. "Otherwise I wouldn’t have any options. I couldn’t go to work and I would have to put Mother in a home. And at the center the staff reinforces their clients’ dignity. They make them feel they’re still a part of society. It’s so important that people really understand that."
     One of a new breed of aging network professionals is the care manager, usually a social worker or nurse who helps a family make and monitor a flexible plan of care. For a fee of $65 to $350 for the initial assessment—then subsequent hourly rates ranging from $30 to $150 depending on duties, credentials, and geographic location—professionals provide a range of services including in-home geriatric assessment, financial management, arranging for in-home care or long-term placement, and developing and monitoring a care schedule.

     Rebecca’s eighty-eight-year-old mother lives on the opposite coast, where she maintained an active life for many years after her husband died. Then her friends began to die, and she had difficulty paying bills and managing a household because her memory was faltering.
     Rebecca, fifty-three and a family therapist, debated whether to bring her mother three thousand miles to live with her family or to place her in an assisted-living facility in her own community, where she would have her own apartment but also supportive services. Her mother insisted on independence, but she became depressed after her other daughter died. Rebecca called her husband’s employee assistance program’s information-and-referral number and found a care management organization to assess her mother’s situation. Together they created a plan including Meals on Wheels, transportation to doctors, and periodic reassessments.
     It’s made a huge difference, Rebecca believes, both in her mother’s well-being and in reducing the guilt over not doing the caregiving herself. Most of all, her mother now has companionship, which can prevent a host of serious complications related to isolation and depression. "For the first time I feel I have support with experts in aging, people knowledgeable about resources in her community. They do things my mother wouldn’t let me do, but somehow with all of us working together, she will accept the services. I felt like I should know more; I was totally lost trying to go back there and set up services. I feel this is in her best interest, and it takes so much burden off. It’s respectful of what she wants."
     It cannot be emphasized enough: We are not alone. There are networks of formal and informal support available at all levels of need. Some are for the care receiver, some specifically for the caregiver. Any help at all, however, will always benefit the entire family. Support saves lives.

The Internet

One of the newest forms of social support is the World Wide Web, which has turned the Internet into virtual communities. This palpable network allows family caregivers to find companionship at all hours, a link to sanity through bulletin board forums, e-mail lists, databases, and live chats. People seek information for medical concerns, local resources, and services, but most of all they tap into the wellspring of experience. And they do it from the anonymity of their homes, often after putting a parent to bed or alongside a bedridden spouse.
     Although computer work can be solitary, this technological forum brings together diverse people from all over the globe who share both suffering and solutions. It is an unprecedented equalizer: there are no economic or ethnic barriers, no geographical provincialism, no ageism or gender bias. The Net allows people to take charge of their lives and then extend a hand to others.

          Says one chat group member:

Something magical happens when people who share similar situations get together, as in a support group on-line. You may have a lot of questions, you may want more information. Since everyone in the group has been there or is there now, there is a sense of trust. Maybe there is a creative way of handling a problem you hadn’t thought of or a way to find humor after a terrible day. Sharing your feelings with your loved one is not always possible anymore, but on-line, heads nod with understanding as you speak. Here you feel relief, the release of pent-up tension that comes with knowing your emotions are not so different.

     Personal outpourings are welcome. It isn’t spelling or speed that counts, but human contact. For Werner of Munich, Germany, a U.S.-based Alzheimer’s e-mail list has been a lifeline, connecting him with caregivers in Israel, Australia, Great Britain, and New Zealand. Public attention for Alzheimer’s disease (AD) is very limited in Germany, he says. The Web has become an adoptive community, taking him through a major life transition. Before his mother developed AD, Werner lived his own life. He worked in Stuttgart for two years, in Italy for four. Now, however, the disease rules his life. "I have never felt a continuous stress like I am feeling for three years. The moments I can live for myself are many times precious; most of the time my emotions go to my mother."
     Werner is able to send his mother to day care, which provides needed respite, but he finds their greatest soothing in music. Brahms’ "Alt-Rhapsodie" is the ultimate. Without it, he feels he could not survive. Werner shares his love of music with his Web friends. In return, he has learned invaluable coping skills, not only in recognizing stages of the disease, but also for self-improvement. "I was rather a great egoist. I did not do bad things to my mother, but sometimes I could have done better: I ignored the first stages of AD. If you flee from responsibility, you will be punished by yourself. Our subconscious knows very well when we did not try our best. And one day the unresolved life tasks come back and want to be resolved. Do it better now."

     On-line relationships can become the strongest in a caregiver’s life. There are no judgments, no masks, and no social obligations. Betty’s friendships have buoyed her through isolating times. She vows she has never met such good friends as she has since going on-line. She never knew she would need them all so much. She went through months of caring for her argumentative mother-in-law and sick husband, both of whom lived at home and didn’t get along. Marc suffered from heart problems after a stroke, as well as high blood pressure and kidney cancer. One day when he complained of excruciating pain in his left arm, Betty had to determine who needed help more. They decided to place his mother in a nursing home because the tension had contributed to Marc’s mild heart attack.
     Betty says her on-line support groups feel like family, because most of her relatives live far away or are not communicative. She had quit work to be with Marc in his retirement, thinking she could handle two housebound people. She struggled to find a nursing home and to get her mother-in-law on Medicaid; then doctors discovered that Marc had double renal failure. Both kidneys were recently removed—after other surgery for a tumor on his esophagus—and he is on dialysis. The couple has great confidence that his health will improve now. Through it all, her Internet friends have been a lifeline: she believes their prayers worked, and her gratitude is boundless. "These wonderful chat rooms have made such a difference. What else in life is there but to care about others?"

Action Steps

  • Become familiar with the range of health care professionals who handle the problems of older people, such as geriatricians, home health aides, and social workers.
  • Investigate community and professional resources and support systems, including assistive or shared housing, adult day care, respite, hospice care, elder law, care management, and financial planners. They exist to serve consumers in need.
  • Set up informal support networks to monitor your loved one, often through a   community’s "gatekeeper" program, which ties in to local social services. These gatekeepers include postal workers, bank tellers, grocery store clerks, newspaper delivery people, utility readers, pharmacists, apartment managers, and bus or van drivers. Talk to neighbors whenever possible. "Telephone reassurance" is a service provided in many communities; volunteers phone daily to check on your loved one. Look into local volunteer companion and visitation services.
  • Using the Internet, support groups, or books and articles, familiarize yourself with the range of international services and information available about medical conditions, social services, financial aid, and legal and housing options. Regular common-sense precautions also apply here.
  • Be aware of the hidden demands and expectations placed on adults by society and culture that contribute to a sense of isolation and guilt.
  • Don’t feel you have to stick with one solution if it isn’t working out. Be flexible and pay attention.

 

Alternative Health Care

Especially in an era of rationed health services, where it is feared that the effort to save money means withholding appropriate care, people yearn for a more humanistic approach. Traditional medicine has set its sights on diagnosis, treatment, and cure of physical systems: drugs and surgery. But gaining popularity are alternative, integrative, and complementary medicines. The goal of holistic practitioners is not only to listen more fully, but in particular to arm patients with tools for more healthful lives. They aim to cure if possible, certainly to delay death, but foremost to view illness not as punishment but partnership.
     The key is choice: the freedom to make intelligent and informed decisions about personal health and wellness. Such wisdom comes from recognizing the link between mental and physical health. Triggering the body’s natural healing powers is the popular message of leaders in the field of mind/body medicine, including author, physician, and lecturer Deepak Chopra. Through several best-selling books and the lecture circuit, his message has become mainstream: Health means enhancing quality of life. Well-being is not the mere absence of disease, he says, but the dynamic integration of environment, mind, body, and spirit.
     Dr. Christiane Northrup, author of Women’s Bodies, Women’s Wisdom, says healing comes from honoring our bodies. She advocates the need to acknowledge the unity of mind and body as well as the powerful role of the human spirit in creating health. Avoiding disease is not the pathway to health, she says; it comes by respecting and caring for oneself, by developing the skills and behaviors associated with true health.
     Other leading mind/body proponents, such as Drs. Andrew Weil and Dean Ornish, also focus on the natural rather than the synthetic. According to Dr. Weil, the body has a healing system that works at every level of being; Western medicine’s myopia is focusing on disease, on form and structure, rather than on the body’s natural gifts. Dr. Ornish puts similar theories into practice in a low-tech program of low-fat vegetarianism, meditation, group support, and yoga. It has shown enough positive results that it is now covered by many major insurance companies as an alternative to heart surgery. Emotional support is also critical: Dr. Ornish believes that when people express their feelings, their health thrives.
Treatment avenues include:
~ Massage therapy and deep tissue body work
~ Acupuncture and Chinese medicine
~ Vitamins and herbs
~ Vegetarianism
~ Aromatherapy
~ Yoga and meditation
~ Stress reduction, biofeedback, and visualization

     According to Dr. Kenneth Pelletier, author of books on alternative medicine, older people are more likely to use such methods because they have more chronic conditions, which are not well managed by the current biomedical model of health care. And so this group supplements conventional medicine, where patients are passive recipients, with corollary practices where they take responsibility for their health—to boost the immune system, to relieve stress and chronic pain, and to reduce blood pressure.
     Critical to this integrative approach is the difference between healing and curing. Cure eliminates evidence of the disease and does not necessarily change a lifestyle. Healing, on the other hand, is an inner process by which a person returns to wholeness. This can take place at any level, eliciting greater communion with life.
     The Wellness Centers, a nationwide chain, are guided by the philosophy that patients who actively participate with health care professionals in their cancer treatment may promote recovery but certainly will improve the quality of their lives. All services are free. Strategies include stress control, directed visualization, humor, nutrition, exercise, seeking family harmony, and dealing with anger and self-blame. Here psychotherapy is an adjunct to conventional medicine; the mind/body connection is the cornerstone of the program, which emphasizes both psychological and social support. "You are not helpless in your fight for recovery," says founder Harold Benjamin. With participation and support, with changes in unhealthful ways of reacting to stress, the strength to fight is restored.
     Michael Lerner, a pioneer in alternative medicine and president of Commonweal research institute in Bolinas, California, says curing is what doctors do to get rid of disease; healing is what patients do in a deeply personal process of safeguarding the soul. The role that each of us can play in our own healing extends beyond therapy to choices about how we live each day. Therefore, he suggests, the more options we have to deal with distress and crisis—including hope—the greater our psychological health will be. Energy—and health—follow thought.

Energy Medicine

One holistic practice is "energy medicine." This discipline suggests that human beings are energetic vibrational fields beyond the five senses. The immune system, for example, is seen as a much larger network connected directly to this energy field and affected by emotions that significantly enhance or suppress its functioning—leading to health or illness. Thus each person bears responsibility for health and balance by how he or she deploys energy in relation to events.
     In her work as a medical intuitive, author and lecturer Caroline Myss has observed how and where humans focus their energy and, consequently, how they are either drained of it or supported by it. When you invest in the maintenance of negative thoughts and memories, including grief and regret, depression, anger, guilt, and anxiety, she says, "you are financing the dead of your life with the life of your life." Where fear is in control, the energy of life no longer nurtures. The body then draws on cell tissue for maintenance, resulting in stress, illness, and compromised immune systems.
     Health arises out of a process of self-examination, Dr. Myss says, a psychology of pathology. The external world—tribal culture, family, group—determines our beliefs and attitudes until we regain our will power to make choices out of love, compassion, and charity. In examining our rote behaviors and attitudes, we discover how we drain energy by seeking confirmation and attention or by building up our self-image, activities that are dictated by trying to conform to an outside standard. Instead, she says, well-being comes from rechanneling our energy into expressing who we really are. True personal power and the ability to overcome poor health and addiction are within reach: intuition is the guide, available once we are willing to look honestly at ourselves and live more mindfully.

Meditation

Quieting the mind to a stillness that reflects our essential nature is the goal of meditation. It is the basis for a world-renowned program at the Stress Reduction Clinic in Worcester, Massachusetts. Jon Kabat-Zinn, director of the clinic, is a pioneer of these classes for people with cancer and other life-threatening diseases. Over an intensive eight weeks, participants learn mindfulness meditation and apply insights to chronic stress, pain, and illness. "Mindfulness is vast, because it is fundamentally about wakefulness, about paying attention in one’s life—all of it," he writes in Handbook for the Soul. "It is simply a universal vehicle with which to explore deep inner connectedness—to access one’s own resources for growing, healing, and self-compassion. We use meditation to help nourish the whole of us, both human and divine."
     As Sogyal Rinpoche says, "Meditation is bringing the mind home, releasing any tension or struggle, and relaxing into the clarity and peace of your true nature." This focused awareness illuminates the turbulence and suffering created by our thoughts, which parade before us in a numbing stream of inner monologue. Meditation teaches observation of these patterns rather than judgment or reaction to them; it is a method of calming both mind and heart so that compassion, rather than fear, can reign.
     It takes practice; mastery does not happen all at once. We must learn empathy for ourselves first, exposing tiers of encrusted habits. Caregiving is an opportunity to look at these layers, meditation practice a tool to do it safely. It is a support system that needs nothing but the willingness to find our own counsel and then trust that it will lead where we need to go.
     The key to fruitful meditation practice, says Stephen Levine, is kindness. "Has the practice made the person kinder, more available to speak from the heart? Meditation allows us to cultivate the ability to respond and break the compulsion to react. Meditation in its very essence is the cultivation of responsibility."

     If we dwell only in our own world, we remain blind to the universe. For we can never find the way out of suffering if we insist on keeping it to ourselves. It is not that we have deliberately cut ourselves off from the heart of connection; but we have done so carelessly. And now we are asked, in the task of caring for our loved one, to find that place within that touches and heals, that risks and gives. We are asked to leave our islands and come home, where others are waiting for us. We are asked to become part of something larger than ourselves. And everywhere are bridges over which we can make that happen.
 

From Caregiving: The Spiritual Journey of Love, Loss, and Renewal, by Beth Witrogen McLeod. Copyright 1999 by Beth Witrogen McLeod. Excerpted by arrangement with John Wiley & Sons, Inc. $22.95. Available in local bookstores or call 800-225-5945 or click here.