Chicken Soup Author LeAnn Thieman, RN, Believes That Dialysis and Other Chronic Illness Caregivers Should Be ‘Honored and Appreciated’
Interview Conducted by Gordon Lore
LeAnn Thieman, RN, is a nationally renowned nurse, speaker, and co-author of the New York Times best sellers, Chicken Soup for the Nurse’s Soul, Chicken Soup for the Christian Woman’s Soul, and Chicken Soup for the Caregiver’s Soul. Her articles also appeared in several other books in the Chicken Soup series as well as such publications as Woman’s World.
A highlight in Thieman’s life was her daring participation in “Operation Babylift” as Saigon, South Vietnam, was rapidly falling to Communist forces in 1975. Also known as the Vietnam Orphan Lift, the operation was a daring rescue of 300 Vietnamese babies. She witnessed as many as “100 babies in open cardboard boxes strapped in the belly of a gutted cargo jet!” A book entitled This Must Be My Brother recounted her participation in the airlift, and Newsweek Magazine featured her story in its Voices of the Century issue. This event dramatically changed Thieman’s life. As of the time of this interview, discussions are underway to translate LeAnn’s remarkable story into a major Hollywood film.
LeAnn believes that laughter is the best medicine for the caregiver as well as the patient. She has found fulfillment in caring for others and teaching others to do the same. Thieman considers herself an expert on establishing a harmonious balance between life and work and making a positive difference in the world.
Thieman is also a contributing author in Publication International’s gift book series, including To A Very Special Mom, To A Very Special Grandma, To A Very Special Sister, and To A Very Special Friend. She won Guidepost Magazine’s 1998 Writing Contest when her inspirational story was selected from more than 5,400 entries. She became the recipient of the 2002 Centennial Regional Nursing Award for Excellence in Human Caring in the Field of Nursing Literature at the Twelfth Annual Nightingale and LPN Nursing Awards Recognition Banquet.
In this interview, Thieman discusses “facts and feelings on caregiving,” problems facing the caregiver, “troublesome feelings,” what caregivers can do to care for themselves, seeking support, dialysis and work, confronting problems at work, what employers can do, information and support resources, feeling “healthier and happier,” how caregivers can find time for themselves, Operation Babylift, and honoring and appreciating the caregiver.
This article was originally published in Issue 15 of NEPHROLOGY Incite and posted on the iKidney.com website, supported by Watson Pharma, Inc. The interview was conducted in October 2004.
Incite: How many people in the US could be classified as caregivers for a family member, loved one, or friend?
Thieman: About 54 million. Another seven million provide long-distance care.
Incite: What is the average age of the caregiver?
Thieman: The average age is 46.
“Facts and Feelings on Caregiving”
Incite: It seems to us that caregivers have been given short shrift in the past. In your opinion, what can be done to raise the awareness status of the caregiver among both the general population and the healthcare community?
Thieman: This very issue is one of my missions in writing [Chicken Soup for the Caregiver’s Soul]—to let the world know the facts and feelings on caregiving. I’ve done dozens of radio and TV interviews already and find the marketplace eager to learn this information. There are some major caregiving associations in the US (listed in the back of Caregiver’s Soul.) Support of these and their efforts to inform the public and government will go a long way in raising awareness.
“Problems Facing the Caregiver”
Incite: What is the most common problem facing a caregiver and why?
Thieman: Feelings of isolation and overwhelming exhaustion because most are “on duty” for many, many hours.
Incite: What are some of the other physical, mental, and spiritual problems facing the caregiver, and what can be done to help alleviate these problems?
Thieman: Caregivers are often so busy caring for others they forget to care for themselves. As a result of caregiving and the ongoing stress it incurs, many caregivers develop health problems. There is a powerful and well-documented connection between the body and the mind. Sometimes strong feelings and emotions such as anger, grief, and overwhelming frustration show up as:
- Acid reflux;
- Blurred vision;
- High blood pressure (BP);
- Muscle soreness; and
- Stomach aches.
Caregivers often experience troublesome feelings such as:
- Resentment about demands, real and imagined;
- Worries, especially about the financial impacts of diseases;
- Frustration with healthcare providers and the patient;
- Exhaustion from balancing caregiving with the competing demands of daily living;
- Depression as life changes drastically;
- Helplessness as the reality and enormity of managing caregiver responsibilities impacts your life;
- Guilt over negative feelings about the patient;
- Discomfort with reversal of parent-child roles; and
- Anger, which is common among caregivers and comes from the emotional stress of caring for another.
Incite: What can caregivers do to help them take care of themselves?
Thieman: They need to be reminded to:
- Eat, sleep; and exercise daily;
- Take mental “breaks” with quiet time for deep breathing and/or positive reading; and
- Take time for quiet prayer and meditation.
Caregivers can significantly reduce stress by:
- Paying attention to their own feelings and emotions and seeking counseling, if needed;
- Getting regular checkup and treatments of aches and pains before they turn into something more serious;
- Eating properly, exercising, and getting enough sleep;
- Creating a support network;
- Easing standards for things such as cleanliness;
- Learning and using relaxation or stress management techniques, such as meditation, visualization, biofeedback, and yoga;
- Staying actively involved with friends and hobbies;
- Finding respite care and regularly taking time out for themselves; and
- Tapping into community-based and national resources for support.
Incite: How can caregivers seek support?
Thieman: Ask for it. While that may sound oversimplified, it’s true. Caregivers need to ask friends and family for help, as many [want] to assist and have no idea how. There are many great caregiving organizations available to offer assistance. The National Family Caregiver’s Association, www.nfcacares.org, is an excellent start in accessing this information.
Dialysis and Work
Incite: Because of their Medicare handicapped status, most dialysis patients do not work, but many still do. Give us a few tips on what the patient, who must undergo 4-5 hour dialysis sessions three times a week, can do to better fit their illness and treatment requirements into their work schedule?
Thieman: Meet with the employer and come prepared with suggestions that will help–for example, coming to work early, staying late, working from home, or taking longer lunch hours to check on your loved one, make personal phone calls, or take a nap! Brainstorm with him/her about other workable options. Often employers allow flexibility in the use of comp time, sick days, and vacations. In many organizations, employees are allowed to donate accrued time off to help a caregiver during a crisis period.
Dialysis [treatments are] the perfect time for patients to balance their lives too! This time can be used listening to inspirational educational tapes so they, too, can be stronger physically, mentally, and spiritually!
Incite: What are some of the typical problems the caregiver faces at work, and how can they be resolved or alleviated?
Thieman: At any given time, 20%-50% of the workplace is dealing with a caregiving situation. Nearly one-half of all caregivers work outside the home.
A recent study showed that 82% of working caregivers came into work late or left early, and 55% modified their work schedules. Many take unpaid leaves of absence or use personal or sick days to provide care. They make long and frequent phone calls on the job, have more mistakes, accidents, conflicts, poor morale, and health problems. Caregivers have more stress-related illnesses, utilizing the company’s healthcare plan, and adding costs to the employer. Eleven-12 % of caregivers quit their jobs early, increasing the turnover rate. Caregiver-employees often turn down promotions, overtime and assignments, or take early retirement.
What Employers Can Do?
Incite: What can employers do to help caregivers resolve their problems at work?
Thieman: Employers can make a tremendous difference in the professional and personal lives of their caregiver-employees. Support from coworkers and supervisors is their greatest need. Extending compassion and empathy is your first step. Encouraging caregivers to care for themselves is vitally important. Remind them to get regular checkups, to eat properly, exercise, and get adequate sleep. Suggest the use of relaxation or stress management techniques, such as meditation, visualization, biofeedback and yoga, and to take time out for themselves. Advise them to pay attention to their own feelings and emotions and to seek counseling and support groups, if needed.
Workplace Caregiver Needs
Caregiving depletes a person not only physically, but also emotionally and spiritually. Subscribing the employee to supportive informational periodicals and magazines, or gifting them with spiritual, inspirational, encouraging books for caregivers goes a long way to show them you care not only about their productivity, but about them personally.
One of their greatest workplace needs is flexible hours and time off. This benefit helps all workers, regardless of their age or family situation.
Support and Information Resources
Other program considerations should include providing information about support services such as eldercare, adult daycare, respite care, or home health assistance. These resources can be provided on-site in lending libraries with in-depth information… in a format that minimizes the time required to access them, such as web-based, printed, or video materials.
Incite: What are some of the other resources that may provide helpful information to the caregiver of a chronically ill person such as a dialysis patient?
Thieman: The National Family Caregiver’s Association, www.nfcacares.org, is an excellent start in accessing this information. Another great resource is the Area Agency on Aging [AAA], www.loaa.org. With the passage of the National Family Caregiver Support Program in 2000, all AAAs have a mandate to address the needs of family caregivers. The back of Chicken Soup for the Caregiver’s Soul has a page listing many national resources that can be helpful.
Feeling “Healthier and Happier”
Incite: How are some ways the caregiver can find joy in caring for a loved one on a long-term basis?
Thieman: Being stronger physically, mentally, and spiritually will make the caregiver feel healthier and happier. Often they need to seek the joy in the everyday experiences—laugh at the funny antics that may otherwise seem annoying. We all must consciously create laughter and joy in our lives.
Finding a Happier “Connection”
Incite: How can the caregiver, who may harbor conscious or subconscious resentment for having to take care of a loved one, find a happier, more productive “connection” with the patient and his/her condition?
Thieman: It’s important to remember what they loved about this person they are caring for in the first place! That person is still inside there, and focusing on those characteristics reconnects them again. Taking breaks to become refreshed and renewed increases stamina and joy. Using the time their loved one is on dialysis as time for themselves can be very healing for the caregiver. Often they use this time to work, but need permission to use it to heal themselves.
Incite: Please tell us a little about yourself. We are particularly interested in the 1975 Vietnam Orphan Lift. What did you learn from this experience?
Thieman: I could write a book on this! Oh wait, I did! As a volunteer, I agreed to go to Vietnam and help bring six babies back to their adoptive homes. By the time I arrived in Vietnam, President Gerald Ford had OKed Operation Babylift, and, as bombs fell outside the city, I helped to bring out 300 instead. I learned you do not have to fly to Vietnam and rescue orphaned babies to be a caregiver. I learned we need to balance our lives physically, mentally, and spiritually every day in order to be strong enough to make a difference in this world, which I believe we are all called to do. I also learned we must truly live the priorities in our lives, not just give them lip service. I’m blessed to be a full-time author and motivational speaker now, sharing these lessons.
Honoring the Caregiver
Incite: Is there anything else you would like to add and that you believe would be important for caregivers and their patients to know?
Thieman: [Only that caregivers] are honored and appreciated!
[For more information about LeAnn Thieman’s books, seminars, or speaking engagements, visit her website at www.leannthieman.com or phone 877-THIEMAN.]
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