CAREGIVING

Topic:

CAREGIVING

In This Session:

Story about Shirley –
Shirley Loflin, 66, knows what it means to go it alone. When her 83-year-old mother died in 1993 after a long illness, Loflin was left to care for both her ailing father and her husband, Geddie who suffered a debilitating stroke.

Story about Beth –
A one-time manager at a major national insurance company, she embraced the role of full-time wife and mother in 1993. The day her mother and father-in-law both ended up in different emergency departments, she realized her career would stay on the shelf a bit longer.

There is no job description for caregivers, but the 25,000,000 million Americans who provide care for elderly or critically ill family members do anything from shopping for groceries and medicines to bathing, dressing, feeding, cleaning house, and taking care of the family finances. Often they do it all. Despite the huge stress, many take on caregiving voluntarily and speak easily about its rewards. They talk about the blessings of giving or the growing self-confidence that comes with mastering one difficult task after another. Still others feel the peace of mind that comes from meeting the needs of someone they love.

About the Authors:

Karen Orloff Kaplan, Sc.D., is the President and Chief Executive Officer of Partnership for Caring: America's Voices for the Dying (PFC). Dr. Kaplan has special expertise in health and aging issues, and in developing health and social policy. Dr. Kaplan's previous academic positions included posts as Clinical Instructor at Tufts University and the University of Cincinnati School of Medicine.

Ira Byock, M.D., is Director of The Palliative Care Service in Missoula, Montana, Director of the Robert Wood Johnson Foundation national program, Promoting Excellence in End-of-Life Care and is a Research Professor in the Department of Philosophy at the University of Montana. He is the co-founder and principal investigator for the Missoula Demonstration Project, Inc, Dr. Byock is the author of Dying Well: The Prospect for Growth at the End of Life and co-author of A Few Months to Live.

Dr. Byock's Op-Ed

Readings:

Living on the edge: Baby boomers faced with caregiving dilemma

By Karen Orloff Kaplan and Ira Byock

Beth Liebich can’t pinpoint the day she officially became a caregiver.
Maybe it began in 1995 with her mother’s intestinal inflammation. There were the twice-monthly doctor visits and extra trips to the pharmacy and the nearly hour commute across town — from her home in Clifton Park, N.Y., to Saratoga Springs and back — to check on Mom during the week. Things heated up when her father and father-in-law each had cardiac valve replacement surgery in Boston within two weeks of one another.
By 1998 she thought nothing of dropping off her mother at the cardiologist’s office, then swinging by to pick up her father-in-law for his ophthalmology or cardiology appointment, making it back in time to hear what Mom’s heart doctor had to say.
In 2000, both her mother and father died. So did her husband’s father.
Now her mother-in-law is in the late stages of Alzheimer’s and Parkinson’s disease.
There is no job description for caregivers, but the 25 million Americans who provide care for elderly or critically ill family members do anything from shopping for groceries and medicines to bathing, dressing, feeding, cleaning house, and taking care of the family finances. Often they do it all.
As the population of older citizens grows dramatically — by the year 2030 there will be 5.3 million aging baby boomers who need long-term care — many caregivers put their own lives on hold to meet the needs of ill loved ones.
Like Liebich, three-quarters of family caregivers are women. According to the National Alliance of Caregivers and AARP, the average caregiver is a married woman in her mid-40s, a high school graduate who works full time and earns about $35,000 a year. But caregivers can be young, old, male, female, employed or out of work, members of large families and small, of every race, faith and denomination. They’re caring for ailing parents, husbands or wives, and even children.
And, according to Carol Levine, an advocate for family caregivers, most “go it alone.” Nearly 83 percent have no paid professional help, such as nurses, physical therapists or social workers, and nearly 85 percent have no other paid assistance, such as home health aides.
Shirley Loflin, 66, knows what it means to go it alone. When her 83-year-old mother died in 1993 after a long illness, Loflin was left to care for both her ailing father and her husband, Geddie, who suffered a debilitating stroke.
“Geddie was close to retirement.” Loflin said. “We were within touching distance from our dreams of traveling, playing with grandchildren, and finally having time just for one another. Life was full and beautiful until the week before Christmas, when it literally exploded.
“First, Mother died, leaving Daddy alone and bewildered. He couldn’t stay by himself, so of course we brought him to live with us. We’d barely settled down to the routine of life together when Geddie, my sweet husband, had a massive stroke, which left him speechless and totally paralyzed on the right side. Within minutes he was reduced to a complete invalid and all our lives changed forever.”
Aside from her frantic care-giving duties, Loflin had to deal with daily life and natural disasters in her home in Americus, Ga.
“One week, our old furnace died, the plumbing backed up, the city was in the midst of a huge flood, a small tornado whirled through our neighborhood and ripped off shingles and tree limbs. Debris was everywhere. Geddie had his first seizure and, on top of it all, Daddy was upset because Geddie needed so much of my time.”
She got through it all, including the death of her father last October, but the experience shook her. “What scares me most is that you never know what will happen next. Life is from minute to minute. It’s living on the edge.”
Loflin and Liebich are among the 25 percent of caregivers in the United States who tend to more than one relative at a time. Even more common is the “sandwich generation,” the baby boomers who are tending to their parents while still raising their children.
Liebich, 46, falls into that category, too. A one-time manager at a major national insurance company, she embraced the role of full-time wife and mother in 1993. She always assumed that when her son left for college, she would re-enter the work force. The day her mother and father-in-law both ended up in different emergency departments, she realized her career would stay on the shelf a bit longer.
But her management skills were put to good use in her new role. In the car between stops she’d call the pharmacy to check on the latest prescription and check in with her son as he returned home from high school. She started carrying a Palm Pilot to organize her parents’ appointments and medications.
“It was a lifesaver,’’ she said. “I have a bad back and I had literally been carrying around many pounds of records.” It also was necessary, she adds, because “otherwise the doctors have no idea what each is prescribing.”
Despite her savvy, Liebich’s family got caught in a bewildering health-care maze, discovering that insurance or Medicare regulations frequently seemed to be at cross-purposes with quality of care.
One day, while her father was being cared for at home, a private aide took her father to the mall so he could go for a “walk” — he could only shuffle a few feet without stopping to catch his breath. A nurse happened by the house while they were gone. The brief walk meant he was not strictly homebound and now ineligible for Medicare home health aides. The twice-weekly, half-hour home visits by the nurse became twice-weekly, two-hour trips to the doctor for Beth and her father.
Caregiving at this level can take a physical toll. While hurrying to get her father situated in his new assisted-living apartment, Liebich broke her back carrying a heavy carton. After a week in bed, she underwent six months of physical therapy and still maintains a stringent strength-training program. Another time, Liebich had an attack of chest pains and it took a night in the hospital and several tests to assure everyone that it was strained muscles and frayed nerves.
The cost to the health-care system of illness and injury among caregivers is significant. A 1997 study by the National Alliance for Caregiving and the AARP found that 15 percent of all caregivers and 31 percent of those providing the highest levels of care experienced significant physical and emotional stress. In another study, over a four-year period, caregivers who reported the highest levels of stress had a 63 percent higher risk of dying than non-caregivers.
The financial picture isn’t any brighter. Many Americans simply die poor, with the health care system having absorbed all the money they and their families have.
According to public opinion researchers Lake Snell Perry, caring for an elderly relative ranks as one of the top financial worries for the 21st century, and with good reason. With nursing homes costing more than $3,000 per month, it doesn’t take long for most Americans to “spend down” to meet Medicaid criteria for being officially indigent. In a 1999 study funded by the Robert Wood Johnson Foundation of patients with advanced, incurable chronic illness, 29 percent of families reported losing most — or all — of their livelihood. Thirty-one percent lost most or all of the family’s life savings. Social Security and pension benefits overall, and out-of-pocket expenses for the care of a single ill relative averaged more than $19,000.
Asked to estimate the amount she and her husband spent in caring for their four parents over the past four years, Liebich quickly ran through the list: There were non-prescription medications, wound dressings and Attends (adult diapers), special food, occasional “Medi-van” transportation to or from the hospital, minor renovations to make the homes safe — handrails in the cellar and halls, elevated toilets, commodes, blood pressure cuffs, and, toward the end, nursing aides from the private duty service. Liebich estimated the total to be in the range of $75,000 to $100,000, maybe more. “Thank God, we had the means to do it,’’ she said. “I don’t know what other people do.”
After her parents died, Liebich faced sorting through their estate — “the caregiver usually gets that chore, too” — but barely had time to face her grief.
“The time to grieve was virtually instantaneous,” she said. “When your mother dies on Saturday, your father-in-law on the very next Monday and your father 2 months later, your day-to-day workload gets cut by three-quarters, but the grief is always with you.”
Proximity had made Liebich the obvious choice to be primary caregiver for their father and mother. But her family pulled together and, she says, in many ways she and her siblings have grown closer during this time, a situation that’s not always the case.
It was probably inevitable that Liebich would become an activist for the plight of caregivers. Although she is still caring for her mother-in-law, Liebich has begun writing and speaking out on the issue, intent on educating policy makers, including legislators and the private foundations that fund innovative health and social projects.
Despite the huge stress, many take on caregiving voluntarily and speak easily about its rewards. They talk about the blessings of giving or the growing self-confidence that comes with mastering one difficult task after another. Still others feel the peace of mind that comes from meeting the needs of someone they love. And some learn more than they thought possible.
“Care-giving has taught me many lessons,” said Shirley Loflin, “among them, that it is more blessed to give than receive.”
Describing the “emotional vocabulary” of caregivers, clinical psychologist and family therapist Barry J. Jacobs said, “They revel in the chance to make a crucial difference in others’ lives. Some see it as a means to give back to loved ones who have cared for them so well in the past. Others, taking a more explicitly spiritual view, feel privileged to be the instruments of God’s love in conveying comfort and hope. The sense of gratitude these caregivers feel appears to make them more resilient in the face of the long years of demanding work.
How caregivers respond to their challenges depends on how well they care for themselves. Shirley describes it this way: “Yes, I have a mountain of care-giving responsibilities, but my well-being is also important. I began giving myself a little priority.”
Caregivers are finding more help out there to do just that, ranging from tips to deal with overwhelming amounts of paperwork to respite care that provides them with “time off,” to an array of Web sites containing strategies for coping.
Most important to Loflin is the support provided by people just like her.
“I craved having someone who ‘had been there,’ had experienced what I was going through,” said Loflin. “In the quiet hours of the night, in moments I can catch when my men are asleep or occupied, I’m on the Internet exchanging e-mails with hundreds of other caregivers. We provide huge amounts of support for one another, practical ideas about how to do hard jobs, humor and kindness. These exchanges nourish me and let me nourish others.”

2001, Partnership for Caring Inc.
Distributed by Knight Ridder/Tribune Information Services.

Tips:

Caring for an ailing loved one can take its toll, but there is help. Here are some practical tips from www.caregiving.com.

Get things in order. Find financial information, including investments, bank accounts and tax returns, and names of lawyers, bankers and accountants. Locate life insurance policies, birth certificates and funeral arrangements papers. Have the names and phone numbers of all physicians as well as information about all prescribed medications at your fingertips. Find Social Security and Medicare cards. Help your charge complete living wills and durable powers of attorney for health care.
Ask questions. Speak with the doctor about diagnosis and prognosis. Ask what you can expect in the future. Advocate for your loved one. Spend time in the library and on the Internet conducting your own research. Contact local agencies to get more information.
Get informed. Learn about hands-on techniques, such as transferring safely, proper skin care and lifting properly. Ask your home health aides or visiting nurses to show you the proper techniques or contact your local American Red Cross to find a caregiving class offered in your community. Log your care recipient’s health in a diary, and include notes about meal consumption, techniques that worked, medication dosages and times and any changes in medical condition. This journal will be helpful during doctor appointments and to update family members.
Talk it over. Make sure all family members have the same information you do. Find out what family members can do to help, even if they’re out of state. Develop a plan of care. For instance, who will help Mom with her groceries? Who will help her bathe and dress in the morning? Who will take her to her doctors’ appointments?
Make time for yourself. This is vital. Pursue your own interests and hobbies. Caregiving is stressful. All caregivers need time away; it’s good for everyone. Attend a support group regularly or find an outlet to vent your frustrations, whether it’s friends, family or a daily journal.
Set limits. Determine at what point you can no longer provide care. For instance, some caregivers decide they are uncomfortable when a care recipient becomes incontinent.
Remember why you’re here. Although your loved one may act “childish” or may be unable to fully care for herself, always respect her need for independence and choices. Encourage her to do as much as possible for herself — you’ll both benefit.
Look ahead. Seek out options for the day when you no longer can provide care. Visit several retirement centers, assisted living facilities and nursing homes to find one that you are comfortable with.
Share, share, share. The best resource for family caregivers is other family caregivers. A network of social support is important for everyone. Sharing your experiences with others is a great way to help yourself and others.

Discussion Questions:

Beth and Shirley became caregivers without ever making a conscious decision to do so. Beth assumed the role gradually, Shirley suddenly. For both the new responsibilities occurred reflexively, in response to the needs of their loved ones. In both cases they were the logical choice within their larger families to care for their ill family members.
Even though Beth Liebich’s parents and in-laws were well insured. They had a long list of needs that required out of pocket expenses. In the article Beth is quoted as saying, “Thank God, we had the means to do it. I don’t know what other people do.” What does happen when less financially secure families encounter needs for non-prescription medications, special foods, handicap or safety equipment around the home? How might the strain of these needs impact the quality of life, physically and emotionally, of an ill person and family?
Shirley Loflin describes drawing strength from communicating through the Internet with others who are going through challenges of caring for an ill loved one. Does it surprise you that this connection is so important and valuable to her? What other ways are there for people to make supportive connections with others in similar difficult situations?
Beth and Shirley’s stories reveal how hard and all-consuming caregiving can be. Especially with more than one person requiring care, the strain on caregivers can cause physical and even significant stress-related illness. This carries secondary consequences and costs to society in terms of lost wages, decreased tax revenues, and increased health and disability expenses. What are ways that our local communities and society as a whole might better support the role of caregiving within families?

Bonus Question 1: Members of the “sandwich generation” find themselves caring for their adolescent or school-aged children and their parents at the same time. What sorts of impact – positive and negative – can a family’s need to care for an ill grandparent have on children?

Bonus Question 2: What things can individuals and families do to prepare for the eventuality of caring for an ill grandparent or parent? What are some preparations each of us can make to help our children and families in case we are eventually in need of care?

Points and Observations:

Shirley Loflin

Shirley Loflin is a friendly, outgoing person who is comfortable reaching out to others. Once she realized her need for emotional support, she quickly found support for herself. Through the Internet she also reached out to assist others in similar situations. Receiving and giving emotional support bolstered Shirley’s ability to provide the massive amount of caregiving that became her responsibility. Often, one of the most difficult parts of caregiving is the isolation it imposes on the caregiver. One is no longer free to socialize with friends, participate in religious activities, or even take walks or other forms of relaxation and exercise. Rather than providing organized systems of guidance and assistance, our society leaves caregivers to find practical help and emotional support on their own. Many caregivers do not have the time, energy, or the skills to find the help they need.
Because Shirley had to provide “hands on” care (in contrast to hiring others to perform these tasks), it was crucial for her to learn proper techniques for providing this care without injuring or exhausting herself. She found such training through The Rosalynn Carter Institute, but organizations and communities that provide such training are few and far between.

Beth Liebich

Beth Liebich also is a take-charge person. Although she is respectful of doctors and those in authority, she isn’t afraid of speaking up and getting her questions answered. Additionally, Beth had formal experience in management that she brought to the task of managing her three relatives’ care. Beth made sure that critical questions about tests, treatments and medications were asked of their doctors. She found out what services might be available to meet their needs, and how to make use of them. She organized their medications and a dizzying array of appointments. All of these tasks make up the “case management” component of caregiving. If there is no family member, friend or professional to take on this advocacy role, chronically ill people and their caregivers run a high risk of falling through the cracks. If there is no one to monitor the situation and complain loudly when things aren’t going well, no one outside the family responds. In this manner, and without ill intention, our social service and health care systems tolerate an enormous amount of unmet need.

References and Resources:

Callanan, M., & Kelley, P. (1997). Final gifts: Understanding the special awareness, needs, and communications of the dying. New York: Bantam Books. The authors are experienced hospice nurses who describe "nearing death awareness"of people with far-advanced illness. They explore the dream-like consciousness and visions that may occur in the weeks, days and hours before death. This book is frequently recommended by hospices to help families understand the potentially frightening mental changes their loved ones may experience. Final Gifts can help caregivers recognize common themes within seemingly confused statements and strange sights and sounds their ill loved one may report. The authors help families respond in helpful ways, alleviating persistent concerns and possible sources of agitation of people who are progressively drawn from this life to whatever lies beyond.
Lynn, J., & Harrold, J. (1999). Handbook for mortals: Guidance for people facing serious illness. New York: Oxford Press. Written for the general public, this volume provides practical advice for retaining control of ones life during serious illness and caregiving. It provides help in navigating the health care system and in dealing with personal affairs.
Thomas, W. (1996). Life worth living: How someone you love can still enjoy life in a nursing home--The Eden alternative in action. Acton, MA: VanderWyk & Burnham. Dr. William Thomas is a visionary who sees bright opportunities within the current dismal state of nursing home care. He envisions nursing homes that are "habitats for human beings" rather than institutions in which frail residents are merely passive recipients of care. Life Worth Living describes his vision for the Eden Alternative, a movement for "greening"of nursing homes. The Eden Alternative encompasses but also goes beyond competent medical care to include active involvement with animals and children and activities intended to elicit joy and enhance quality of life for long-term care residents.
Fraidin, L., Glajchen, M., & Portenoy, R.K. (2000). The caregiver resource directory. New York: Beth Israel Medical Center. Available on-line or in print at no cost at the www.stoppain.org websites resource department. An exceedingly practical guide for caregivers. Each section of the Caregiver Resource Directory addresses the major tasks of caregiving and offers well-considered advice and resources. Specific issues include navigating the health care system, managing symptoms, developing goals in chronic illness, making decisions and caring for oneself. The challenges of caregiving are presented along with sound guidance and user-friendly resources to help caregivers meet those challenges.
Pipher, M.B. (2000). Another country: Navigating the emotional terrain of our elders. New York: Penguin/Putnam. Mary Pipher combines insights from her work as a psychotherapist with her own personal experience struggling with the role, responsibilities and day-to-day tasks of caregiving. Richly illustrated with examples from her life and clinical practice, Pipher blends sound wisdom with practical advice for improving communication across generations and for coping and preserving the caregivers psychological well-being.
Lazer, D., & Schwartz-Cassell, T.L., (2000). Adding value to long-term care. San Francisco: Jossey-Bass. Intended primarily for administrators of long-term care facilities, this book is a valuable companion to Thomas Life Worth Living. The authorsvalues-based approach provides a clear, step-by-step approach to transforming long-term care environments in a manner that fosters greening while enhancing compliance with prevailing regulations.
Lustbader, W. (1994). Counting on kindness: The dilemmas of dependency. New York: Simon & Schuster, The Free Press. Independence is among the highest values in American culture and society. When illness and disability render people physically dependent, both the patient and their family caregiver struggle with their new roles. In this sensitive book Wendy Lustbader skillfully allows people who are living with physical dependence and those caring for them to voice their feelings and perspectives. They express what is most hard, what helps, and what matters most. This book deserves to be read by every family caregiver and by anyone requiring care by a family member.
Levine, C. (Ed.). (2000). Always on call: When illness turns families into caregivers. United Hospital Fund of New York. Carol Levine has gathered narratives written by family caregivers themselves that clearly and poignantly describe both the hardships and rewards of caring for a seriously ill family member. These narratives offer first-person accounts of family caregiving that caregivers will find supportive and enlightening. In addition to the narratives, Ms. Levine has included chapters written by a number of experts dealing with emotional and practical aspects of caregiving. The volume closes with a resource guide including many significant sources of assistance for caregivers and tips about locating others.
Larson, D. G. (1993). The helpers journey: Working with people facing grief, loss, and life-threatening illness. Research Press, Champaign, Illinois. Dale Larson's book is designed to enhance caregiversknowledge and skills, and provide insights and suggestions about both the emotional and practical aspects of caregiving. Caregiver burnout is a particular focus of Dr. Larson's book and he includes a self-assessment tool caregivers can use to gauge the extent of burnout they may be experiencing. Dr. Larson also provides a series of recommendations for preventing burnout and for dealing with it once it occurs.
Doka, K. J., & Davidson, J. (Eds.). (2001). Caregiving and loss: Family needs, professional responses. Washington, D.C.: Hospice Foundation of America. The volume, primarily for professionals who work with and on behalf of family caregivers includes 12 chapters, each written by a nationally known expert in caregiving. Covering a range of issues from policy and programs to detailed explorations of the caregiving experience and professional responses, Caregiving and Loss: Family Needs, Professional Responses is particularly helpful in describing the various aspects of grief and loss.

Links: You must be connected to the internet for these links to work.

Caring Road
Interactive site offering support and information for caregivers, including chat rooms, links and a disease directory.
www.caringroad.com

Department of Pain Medicine and Palliative Care
New York Beth Israel Medical Center
New York Beth Israel Medical Center has created the Caregiver Resource Directory to help family caregivers feel less alone and overwhelmed.
www.stoppain.org

The Family Caregiver Alliance
Provides resources, including information about specific diseases and related public policy news.
690 Market Street, Suite 600
San Francisco, CA 94104
(415) 434-3388
www.Caregiver.org

The American Pain Foundation
Provides a survey to screen yourself for depression and access to on-line support.
201 N. Charles Street, Suite 710
Baltimore, MD 21201-4111
www.painfoundation.org

Partnership for Caring: America’s Voice for the Dying
A consumer advocacy group, offers state-specific, advance directive documents to print or order. You’ll also find “Talking About Your Choices”, a booklet that introduces issues surrounding end-of-life decision-making.
PFC Publications – Publications Office
325 East Oliver Street
Baltimore, MD 21202
Hotline: 1-800-989-9455 (option 2)
www.partnershipforcaring.org

The National Alliance for Caregiving
Provides information from pertinent studies, tips for caregivers and a searchable resources directory.
4720 Montgomery Lane, Suite 642
Bethesda, MD 20814
www.Caregiving.org

The National Family Caregivers Association
Offers practical information and answers to frequently asked questions (FAQs), as well as “A Guide to Improving Doctor/Caregiver Communication.”
10400 Connecticut Avenue, #500
Kensington, MD 20895-3944
1-800-896-3650
www.nfcacares.org

The Midwest Bioethics Center
Makes available Caring Conversations (http://www.midbio.org/workbook.pdf), a workbook to help start conversations, including advance health care planning and advance directive forms.
1021-1025 Jefferson Street
Kansas City, MO 64105
1-800-344-3829
www.midbio.org

Empowering Caregivers
A comprehensive site offering information, emotional and spiritual support through featured expert columns, articles on caregiving, journal exercises, a newsletter, forums, chats, healing circle, caregiver and caregiving spotlights, inspiration, humor and more.
National Organization For Empowering Caregivers
425 West 23rd Street Suite 9B
New York, New York 10011
(212) 807-1204
www.care-givers.com