I Feel Your Pain
Crisis is upon you… A loved one is fighting for their life. So many people may want to help, but they don’t know what to do. Understanding the emotional volatility of a caregiver and their family is a good starting place.
The Human Side of Caregiving
Taking care of someone you love who is dealing with a life-and-death health battle may be the single biggest challenge you face in life. Not only do you have to stretch your own life in a hundred different ways, but you’re also losing the support of someone who was once there for you if that person is a close family member or spouse. Not only are you confronting your loved one’s fears about pain, death and dying, but you are confronting your own. You’re exhausted and find yourself going blank when a doctor, nurse or health care professional is speaking to you. You are unable to set limits on how much time you spend on your loved one’s health problems.
Your emotional swings are as manic as theirs. Chronically sleep-deprived, you snap at your family, forget to care for your dog or cat, lose your car keys or glasses, and even forget why you went into a room when you get there! You feel totally responsible, guilty, embarrassed at your own fears and often are not able to articulate this to anyone. You may even feel guilty for being healthy and neglect your own health! You stop going to the health club. Your job begins to suffer. You begin to withdraw socially, never having the energy or down time for fun. You forget to laugh because nothing is funny anymore.
Unless someone has gone through a sudden life-and-death health battle themselves or with a family member they do not understand what you are feeling. You stop sharing your challenges because you feel that no one wants to hear your problems all the time and your life is consumed with challenges every minute of every day so you have nothing else to share. You may even create an invisible wall around yourself. Bottom line…you know you must keep going even as the problems mount.
Some caregivers are seen as a rock; the one everyone goes to and depends on, the one with answers and assurances. Others find themselves a puddle, incapable of doing more than being present in the room with the person who is battling for their life. Either way, as a caregiver you deal with the very real possibility that you may have to face the death of someone you deeply love and care for. Truth is, no one wants to confront life-threatening health conditions unless forced to!
Knowing how a caregiver feels is a starting point to being a supportive friend. Assure caregivers that you want to hear about their challenges. Encourage them to share. Be willing to step up if you know there is something you can do or if there are others you know who can help. Understanding how they feel is a first step in helping keep them emotionally healthy during this challenging journey with their loved one.
We Are Here to Serve
Here to Serve is a non-profit group is dedicated to making a difference in the lives of the terminally ill, their caregivers and their family.
More families are finding themselves in a situation where they are the only people who can give the proper care of family members with serious life-threatening conditions or old age.
However, the burdens caregivers face are are just as serious as the battle their loved ones are fighting.
When a family member is stricken with a fatal injury or illness, there’s rarely enough time to gather the resources of friends, family and the community for the ordeal. Here to Serve stands with caregivers to provide them with referrals to assistance programs and other organizations. By providing personalized assistance to each caregiver it serves, Here to Serve aims to help bear the burden that comes with helping an ill family member.
About Here to Serve’s Advisory Board Member Dr. Judith Sato, MD
Here to Serve is proud to have one of the nation’s top cancer doctors on its advisory board, Dr. Judith Sato. She not only brings medical knowledge, but first hand experience working with parents who face the difficult situation of caring for a child afflicted with the disease.
Not only is Dr. Sato a physician at one of the top cancer centers in the U.S., City of Hope in Duarte, Calif., but she’s director of its Musculoskeletal Tumor Program and a researcher and pediatric oncologist known around the country. A specialist in treating bone tumors and cancers found in body extremities, Dr. Sato helped to establish standards used worldwide in the treatment of childhood cancers.
Prior to working at City of Hope, Dr. Sato was clinical director and deputy head of the Division of Hematology/Oncology at Children’s Hospital Los Angeles. She lectures around the world and is author of numerous research papers.
Our Inspiration: Paul M. Alindog-Bouvier
Though cancer took his left arm, Paul M. Alindog-Bouvier is remembered by his friends for his enduring faith and for doing more with his right arm than most people with both arms.
Stricken with cancer for eight years, Paul would study and prepare for his classes and exams during his chemotherapy sessions. He did not allow his condition damage his spirit or keep him from taking part in sports, student government and music. His peers named him “Most Inspiring Student” in middle school and high school for his boundless optimism and involvement in his activities, despite his health.
Before his death, Paul was active in fundraising for the Camp Ronald McDonald House and the City of Hope. Just as important, Paul was a friend to Bryan M. Quintas, the son of Here to Serve CEO Katie Quintas who also endured his own diagnosis and treatment for cancer. Knowing Paul is a gift from God, and though he is gone, what we do at Here to Serve honors his memory.
Our Inspiration: Jessica Grace Mastan
A promising athlete, 12-year-old Jessica Grace Mastan was struck with a pain in her hip after falling during a soccer game. She was diagnosed with a rare and aggressive bone cancer, Ewing’s sarcoma.
The five months she spent in chemotherapy failed to treat her condition. She faced a decision that could save her life, but leave her crippled as well. Jessica was very active and involved in running, sprinting, swimming, basketball, soccer and dance. Despite the likely possibility that the surgery, which would remove half her pelvic bone, would end her career in sports, she bravely faced the surgery.
Despite the odds, Jessica set a record for recovering in 17 days. Doctors also told her it would take her a year to walk, but she again defied the odds and did it in six months.
Jessica no longer needed the ramp her family built to assist her and her father decided to tear it down. Urging her on to destroy it to take out her anger and frustration, Jessica told him that she wasn’t angry.
However, despite taking on the odds, Jessica passed in March 2010 at age 14 due to a massive stroke. Her refusal to give in to cancer is an inspiration to all of us at Here to Serve
Caring for the Caregiver
In situations where one deals with a seriously ill family member, there’s rarely any discussion of their own well-being during the ordeal. It’s understandable. With the challenges an ill family member faces, caregivers see any inconvenience as small and insignificant.
However, there is a personal and emotional toll for that kind of personal and around the clock attention. The Family Caregiver Alliance found 90% of 500 caregivers describing the ordeal as frustrating, draining, and painful. Other studies found that more than half of those caring for a family member felt they didn’t have enough time for themselves and do not get enough sleep. Reports of depression and burnout are also not uncommon. Understandably, half of the caregivers in a study reported their own health deteriorated.
Finally, the mortality of caregivers were 63 percent greater than others — with some of them dying before the ill family members they were caring for.
Taking advantage of the services Here to Serve offers can not only assist to bring back some balance to a caregiver’s life, but can possibly ensure that the caregiver can continue to be there for their loved ones.
Why We Serve
Though the explosion of entertainment, smartphones and internet access brings convenience and options only dreamed of only 10 years ago, it’s also disconnected us from our neighbors and community that would have, in the past, helped in times of need. The journey a family must take when their child experiences a critical illness is often overlooked, yet it can make or break you. Research organizations searching for cures and hospitals treating critically-ill kids are plentiful and well-funded. But, what happens if a family makes a dollar or more than government support programs and nonprofit organizations will allow? Many working-class families live on the edge just making ends meet. They often rely on two incomes and pay for private insurance usually with high deductibles and co-pays. Their treatment options and hospital choices can be limited because they chose an affordable plan betting a medical crisis will not occur…then it happens! Where do they turn?…often to family and close friends. However, this can be a confusing and overwhelming labor of love for even the closest of family members and close friends.
People feel they don’t know their neighbors well enough to ask for help. Likewise, when people they feel they should offer help, they don’t know what to say or if they should even offer their help.
Here to Serve helps to rebuild communities of caring and compassionate people, businesses and organizations with caregivers who may be new to the area, a single parent, part of a family that needs both incomes to survive or who do not speak English.
EEOC Vows to Defend Employment Rights of Caregivers
In a public meeting, the U.S. Equal Employment Opportunity Commission heard experts testify as to the discrimination caregivers face in the workplace.
More than 40 percent of American workers have given care to a family member or friend in the last five years, and almost half will be in the position of caregiver in the next five years.
EEOC Commissioner Stuart J. Ishimaru said, “Employers should not make decisions based on stereotypes and presumptions about the competence and commitment of these workers. EEOC will vigorously enforce the anti-discrimination laws as they apply to pregnant women and caregivers.”
About Here to Serve’s Advisory Board Member Melanie Sauer-Beegle
As director of business operations for Southern California Public Radio, an affiliate of National Public Radio, and consultant to non-profit children’s and theater groups, Melanie Sauer-Beegle’s financial expertise is welcomed on Here to Serve’s advisory board.
Sauer-Beegle’s background is an eclectic mix of education, management and non-profit causes. Though her bachelor’s degree is in accounting, she also holds a master’s degree in education administration and human development and was employed by the University of Southern California and Scripps College. Melanie has blended her background in education, accounting and finance by teaching online courses in Finance and Accounting for the MBA program at St. Georges University in Grenada, West Indies. She also serves on regional associations and boards and speaks at national conferences.
She received an MBA in finance strategy at the Peter F. Drucker Graduate School of Management — while attending the program, the college recruited her as associate director for its executive management program.
Caring for Ill Family Members a Source of Anxiety for Women
A Forbes news item found that 66 percent of both black and white women are worried about caring for sick family members.
Though Hispanics were not included in the study, a 2008 report found that one-third of Hispanic households had at least one caregiver under its roof, 75 percent of which were women.
on female family members comes while Congress fails to renew legislation that supports caregivers.
Caregivers who care for family members take home less pay from their jobs, are removed from advancement, or have to quit. This also means a hardship for the family, without Social Security and retirement income.