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.
Traditional Family and Cultural Supports
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.
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, Ametas father had leukemia. She
went to her parents home every day to cook meals, give medicines, and help with her
mothers 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, Ametas
fifteen-year-old son moved in to take care of his grandmother while Ameta couldnt be
there; a year later she and her twelve-year-old daughter moved in as well. What they
didnt know was that the aneurysm was a prelude to Alzheimers. 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: Ametas son even
fixed his grandmothers 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, Ametas son and his new wife wanted to
move in and take care of Callie, as did her daughter and new son-in-law. Ametas 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 Ametas 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 doesnt miss a word. She can still quote scripture and say
full prayers. "My husband says that is because thats 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-Andersons 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, its an uplifting
experience. If you adhere to the traditional ideologyand parent care is
traditionalthe ability to do that raises a persons 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 havent the capacity to hold anothers 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 dont 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 elderlythe 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 youre doing them its
hell for you because its a total disruption in your life. And then you realize
thats what life is all about, this helping. There isnt anything else."
Doctors, social workers, psychologists cant 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 arent available, the
professionals provide surrogate support.
Roberts 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 didnt 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 didnt 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, "Im getting worse, Im 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 mothers 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 attorneys advice, Robert sold
his mothers 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 Roberts 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 didnt try anything on my own. Once I knew
what I was dealing with, I accumulated as much information as possiblereading, a
group therapy session. Its been stressful and time-consuming, but the experience I
have in this fieldfinancial, medical, and legalis 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, its 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 seriouslydont 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 wouldnt have any options. I
couldnt 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 theyre still a
part of society. Its 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 assessmentthen subsequent
hourly rates ranging from $30 to $150 depending on duties, credentials, and geographic
locationprofessionals 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.
Rebeccas 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 husbands employee assistance
programs information-and-referral number and found a care management organization to
assess her mothers situation. Together they created a plan including Meals on
Wheels, transportation to doctors, and periodic reassessments.
Its made a huge difference, Rebecca believes, both in her
mothers 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 wouldnt 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. Its 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.
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
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 hadnt 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 isnt spelling or
speed that counts, but human contact. For Werner of Munich, Germany, a U.S.-based
Alzheimers e-mail list has been a lifeline, connecting him with caregivers in
Israel, Australia, Great Britain, and New Zealand. Public attention for Alzheimers
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
caregivers life. There are no judgments, no masks, and no social obligations.
Bettys 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 didnt 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 Marcs 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 removedafter other surgery
for a tumor on his esophagusand 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
Action StepsBecome 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
Set up informal support networks to monitor your
loved one, often through a communitys "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.
Dont feel you have to stick with one solution
if it isnt 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
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 bodys 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 Womens Bodies,
Womens 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 medicines
myopia is focusing on disease, on form and structure, rather than on the bodys
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
~ 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
healthto boost the immune system, to relieve stress and chronic pain, and to reduce
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 crisisincluding hopethe greater our
psychological health will be. Energyand healthfollow thought.
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 functioningleading
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 worldtribal culture, family,
groupdetermines 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.
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 ones lifeall of it," he writes in Handbook
for the Soul. "It is simply a universal vehicle with which to explore deep inner
connectednessto access ones own resources for growing, healing, and
self-compassion. We use meditation to help nourish the whole of us, both human and
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.